Advice about Autism
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Advice about Autism
Some acronyms used on this page:
ABA = Applied Behavior Analysis
AS/ASD = Autistic Spectrum Disorder
HFA = High Functioning Autism
IEP = Individualized Education Plan
NT = Neuro-Typical (not autistic)
PDD-NOS = Pervasive Developmental Disorder - Not Otherwise Specified
RC = Regional Center (RCEB = EC East Bay www.rceb.org)
Evaluation for Autism
My son didn't have any words at his 18-month well check and also didn't have all the
right boxes checked on the M-CHAT (autism red flags), so we were referred to a
speech therapist for an evaluation. By the time we had that visit, about 6 weeks
later, he had about 15 words and we thought he was fine, but decided to go anyway.
We were shocked to have her tell us he was very delayed and needed to be evaluated
at the Regional Center for other issues involving play/social development. After
sending paperwork to the Regional Center at the beginning of December, we are still
waiting to hear from them. In the meantime (he is now 21 months old), he is using
new words every day (including daddy and mama, waving hi and bye), pretends to feed
tea to his dolls, has a social laugh, plays with cars like they are cars,
etc...basically the stuff we were told he was behind on he seems to be caught up
with. I've re-taken the M-CHAT online and it said ''no cause for concern.'' My gut
tells me he's a late bloomer, but I know we need to get the evaluation done with the
Regional Center to be sure. My question is - can they tell whether a kid is a late
bloomer or needs intervention? If he really does have a problem, I know we need to
deal with it, but will someone be willing to say he is just off to a slow start? I
read developmental charts and he does seem to be behind, but I feel like he's
catching up - anyone else go through this? Can a kid can be slower than average to
reach milestones and still catch up? He stacks blocks, makes eye contact,
points...but he did those things when we saw the speech therapist and she still
thought he needed 20-30 hours a week of developmental therapy. Thanks for any
Yes, specialists can tell the difference between autism and late bloomers. I take from your post
that you are afraid of the diagnosis. I understand that. Ideally your child would indeed just be a
late bloomer. But you can only gain from an evaluation: Either the confirmation that he is fine,
just a bit behind, or you get a diagnosis - doesn't have to be autism - and can start
intervention. Should there be a need for it, starting intervention earlier rather than later is
definitely going to be beneficial for your child.
My son who is 19 yrs old was a lot like your toddler, late at everything, no talking until pretty
late, very cautious to try new things. He had a speech problem and went to speech therapist until
he was 8(from little i remember). There was no doubt by his interactions at that time that he was
even a bit of autistic or asperger... I let him be, not pushing him, he grew into a great young
man, confident, smart, good student (in college now)
Getting your child a diagnosis can only help because the interventions are like a
highly-enriched preschool tailored to what your child needs. The testing is like
observation and playing games. Many of these problems can be greatly remediated in
early childhood because the brain is very flexible, so treatment is very effective;
and if he is just a ''late-bloomer'' therapy will only help his language skills.
I'm feeling a little overwhelmed. I am having really gut
feelings that my 14 month old boy displays signs of
autism. We have a newphew and cousin who have autism, so
I am aware of the symptoms. I tried calling early
intervention to have him evaluated, but they say they
don't evaluate for autism until 18 months. I know early
intervention is very important in terms of outcome, and
I'm wondering if there are any families out there that
were able to get services for their child at a younger
age. If I get him evaluated by a developmental
pediatrician and get a diagnosis can we start a program
through early intervention? I know 14 months is very
young and many people will tell me to wait, but I can't
just sit back and do nothing when I really feel like
something is going on. I'm already looking into dietary
changes, adding some basic supplements, homeopathy, and
Thanks in advance for any advice.
Yes, you can get a diagnosis before 18 months and it's
important so you can start necessary therapies
(speech/language, occupational, etc.) The Regional Center
can evaluate and provide services before age three years.
(After three years, school districts generally take over.)
Also, you might try Easter Seals; I know they evaluate kids
starting at 14 months. Go with your instincts and don't let
anyone dissuade you from demanding early intervention--it's
crucial. Not all pediatricians recognize the signs and many
advise to wait and see. Not a good idea when early therapies
are necessary. Good luck!
Mom and professional in the field
hi there. i'm a developmental psychologist and provide
early intervention services to an array of young children
aged birth-3 years, some of whom have a diagnosis of
autism. i understand your frustration in wanting to have
your child diagnosed as soon as possible. one of the
reasons they typically wait is because you want to be sure
the child is old enough to actually have some language (in
order to assess for language delay, which is part of the
diagnosis) as well as some socialization opportunities.
if your child has other developmental delays prior to 3
years of age (fine motor skills, language, cognitive dev,
etc.), you can be referred to one of the CA Regional
Centers for an intake assessment and developmental
evaluation - which would determine if s/he qualifies for
early intervention services. they would also assess for
autistic spectrum disorders (again, probably not until 18
months or later) if there are red flags, concerns, etc.
this is probably the best route to take and would not cost
you anything for the initial intake assessment or any
other ongoing services.
hope this helps!
My youngest son was diagnosed with autism at 16 months by a team at Alta
Regional Center. HIs pediatrician was also very knowledgeable on the topic,
unlike so many others I have come across. I would call regional center again and
ask to have him assessed. I didn't specifically ask for my son to be assessed for
autism, just for delays, and I didn't get an runaround. My experience with RCEB
has not been as positive, though it hasn't been horrible, either. You are right that
there is no reason to wait and everything to be gained through early
intervention, whether or not he is on the spectrum. I would push them for
another evaluation and get one from a dev. ped only as a last resort. It is
expensive and I have found we have received whatever services he needed
through his regional center eval.
SPED teacher mom
Yes, children can be diagnosed with autism prior to 18
months. My son was diagnosed at 15 months, though the
diagnosis at the time was considered provisional because the
primary tool used to assess autism, the ADOS, had not yet
been validated for children so young. However, I believe
there is a newer version of the ADOS for children under 18
months now, and there is some good research data indicating
that children as young as 14 or 15 months can be accurately
diagnosed with autism. As a mother and a mental health
professional, I urge you to see a qualified developmental
pediatrician or a clinical psychologist with expertise in
diagnosing young children on the spectrum. If your child is
found to be on the spectrum, please consider pushing the
regional center to provide you with at least 25 hours a week
of ABA. You can self-refer to the regional center, but it
is better to have a developmental pediatrician or other
professional refer you. Best wishes. R.
I am seeking help and lost at the moment as it relates to
my son's primary care provider believes my 2 year old has autism. I
am looking for advice on where to proceed from here. My
son's doctor didn't have much to say other than you have a
lot of work to do and don't let him see tv. If you have
advice as to local groups, daycare, centers, etc in the
Castro Valley (Eastbay Area) please email me.
Thank you for reading my post.
I wanted to share my experiences on what I did when I
suspected that my son was on the autistic spectrum. The
first step you should take is to contact the Regional
Center. The phone numbers/contact information are found at:
http://www.rceb.org/ The Regional Center is then required
to evaluate your son. I will warn you that it does take
quite a bit of time for the Regional Center to get back to
you (I believe for me, it took two months - but it could
take longer now), so if you do have the financial resources,
I would suggest getting an independent evaluation from a
developmental pediatrician. There are some good referrals
in the archives of the BPN (by the way, I also recommend
that you find another pediatrician for your son, as it
sounds like your current doctor is not qualified based on
the advice he/she provided to you). After my son got the
diagnosis of autism at age 2 1/2, the Regional Center
provided in-home ABA therapy, occupational therapy and
speech therapy. The Regional Center will provide you with
recommendations on therapists, but I highly suggest that you
do your own research on who the best therapists are, and
then ask the Regional Center if they will fund them. I also
put my son on a Gluten Free/Casein Free diet. Many people
don't believe it works, but many also do thinks it works.
In our case, my son had severe constipation, and we found
the diet to really help that. I don't want to overwhelm you
with too much information, but I think those are the main
things to consider/get started with. I also wanted to say
that even though it can feel overwhelming and stressful, it
is well worth the effort to get help for your son at this
early stage. I'm happy to say that after two years of
therapies, etc., my son is doing very well. He is in a
typical preschool, and is a social and happy little guy.
I am really hoping someone can help this person.
It just breaks my heart, that all he took from his ''dr''
regarding an Autism Dx is that you have a lot of work to do,
and that his son cannot watch anymore Television ??
Hoping someone can guide this person is the right direction
- for his son's sake.
My 5 year old child who just entered Kindergarten is getting
into a lot of trouble at school. He is being evaluated by a
school psychologist who is telling us that he could be
suffering from one of the autism spectrum disorders and advised
us to get a medical diagnosis. I am devastated after
We have seen several ''specialists'' since he turned three
because we realized that he had some issues and we got several
different opinions ranging from ADHD to Sensory Processing
Disorder. I dread going to another doctor now but I
want to do whats best for my child. If I get recommendations
for doctors in the bay area who specialize in recognizing or
ruling out Autism Spectrum Disorders, I would be so grateful. I
have been researching this online and my child doesn't seem to
fit into any of the five categories!
I would greatly appreciate responses from parents who have gone
through similar experiences. Thank you.
Sad and frustrated mom
If you want to find out if your son falls within the Autism Spectrum
Disorder, I'd recommend going to see Dr. Bryna Siegel at the Autism
Clinic in the UCSF Psychiatry Department. She's an expert in this
field and will tell you if your son fits this diagnosis. I took my
son to see her 14 years ago and even though he didn't fit it
perfectly, she decided that he had Asperger's Syndrome. A diagnosis
is heartbreaking news, but there is a lot of help out there. My son
is now 18 and getting help to attend community college. Here's the
website for the clinic: http://psych.ucsf.edu/lpphc.aspx?id=438
our pediatrician referred us to the Regional Center of the East
Bay; our experience with them thus far has been really great.
They sent out an initial specialist, who is now referring us to a
medical team (psychologist and pediatrician) that specializes in
the autism spectrum. if your child is diagnosed, he/she will be
eligible for free services. look them up on the web.
I know how difficult this is for you, but it's good that you're
trying to get an accurate diagnosis so your child can get
appropriate interventions. Since there is now a much greater
awareness of ADS, there is also a tendency to over-diagnose. Be
aware that it is difficult to accurately diagnose a child with an
ASD in an office or clinic. Who ever evaluates your child should
do an in-depth interview with you about your child's early
development, focusing on three areas (social, language, and
behavior). Many children with ASDs are first misdiagnosed with
ADHD, and many have sensory integration disorder. However, with
early appropriate intervention, they can make LOTS of progress.
There is a huge range of symptoms, and no two kids look alike.
Many are very high functioning and need varying amounts of support.
I have a child with an ASD, and I'm a professional in the field.
I've been impressed with evaluations done by psychologists and
psychiatrists at Children's Hospital, but I've found
psychologists at Kaiser Oakland and Santa Theresa a little too
eager to diagnose after an office visit and not enough
investigation into kids' behavior in their natural environments.
However, private practitioner Mansoor Zuberi, MD, in Walnut Creek
has a lot of experience with kids on the spectrum and knows how
to evaluate them.
Are you working with an occupational therapist for the sensory
issues? Some of them can give feedback on ASDs. I've heard good
things about Susan Campodanico at Alta Bates. Speech and Language
Pathologists can also help identify ASDs.
You might ask for a second opinion within your school district.
An IEP team can determine special education eligibility without a
doctor's diagnosis if the school psychologist and speech/language
pathologists are experienced in identifying ASDs.
You're not alone. Good luck!
My son had similar issues. We currently see Dr. Brad Burman and are
very happy with him. I highly recommend him. He is far and away the
most competent of any of the professionals/physicians we have
seen. Take heart: more information is better and there are abundant
resources for these kids. Good luck
Hi. Please contact Oakland Children's Hospital. They have an
autism screening process which should be able to answer your
question as to where your son is quickly. Good luck.
I wish I could recommend a doctor for you- our son goes to public
school so he was diagnosed by a psychologist through the school
district. I just wanted to let you know that going through more
than one diagnosis is very common.
Our son has PDD-NOS, an autism spectrum disorder. His symptoms
mainly consist of language delays. Here is his ''diagnostic
history.'' Twice we were told he had no language delays. Then we
were told he had Sensory Integration Disorder, but fortunately
not autism. Then we were told that he had sensory issues, an
autism spectrum disorder and significant language delays. Each
professional had a different opinion. We took him to an autism
language clinic where we were told that he was not autistic, had
no language delay, but that we should take him to the
pediatrician for medical advice because he was ''non compliant''
during the assessment.
If there is anything I have learned it is that it is important to
ask exactly what assessment tools are being used. I felt that
the more informal the assessment was the more off the mark it
tended to be. The psychologist at OUSD used the ADOS- the autism
diagnostic observation scale. The key word is ''observation''. I
still think it is somewhat subjective. I'm not sure my son is on
the autism spectrum but at least he is getting plenty of language
Have you looked up the DSM entry for Autism? You can find it on
the internet. If you haven't already seen it you might find it
helpful. Autism really is a broad spectrum. I would also
recommend reading ''The Misdiagnosed Child,'' not as fodder for
arguing with psychologists, which I have found futile, but to
learn about the various disorders, how they overlap, and how one
can be mistaken for another.
It sounds like you have financial resources, which is wonderful.
You might want to get a neuropsych eveluation. Don't give up
looking for answers.
In your post this sentence screamed out to me ''I have been
researching this online and my child doesn't seem to fit into any
of the five categories!" I encourage you to trust what you know
deep down and here is why.
My son started Kindergarten this year at Harding Elementary and
was in a very similar situation to what you are describing. He
is highly sensitive and was easily frightened by the teachers and
was acting out. The school teachers and the Principal handled it
extremely poorly, telling me there was something wrong with him,
that he was not ready for kindergarten and that he needed to be
medicated. I did the trip to the Doctor and set up Psychologist
evaluations and started to believe what I was being told.
However deep down in my gut I knew that he did not act like this
with us at home and trusted my instincts that there was nothing
wrong with my child.
The first thing I did was move my son to another public school in
the school district that was on a faster pace in learning and had
a calmer environment. I am happy to say that he is excelling and
not exhibiting any of the behavior problems that were happening
in the other school. NEVER has he acted out at this new school.
Turns out he was bored at Harding and scared of his teacher and
the unsafe environment they had set up for the Kindergartners.
His acting out was his message to us that it was not the right
fit for him. I cannot tell you how relieved we are that we chose
to try another school before we were convinced by the teachers
that he had a behavior disorder and I really encourage you to
look at other schools for your child. If he still has the same
problems at a new school then maybe you need to go down the path
of looking at diagnoses but please remember that some schools
seem to think it easier to label & medicate children (especially
boys) than to teach using a variety of methods that encourage
every child to learn.
The whole experience was one of the most stressful times in my
life and it was truly the public school nightmare that I feared.
I completely understand the turmoil you must be going through.
If you would like to contact me off the forum I'd be happy to
talk with you more - my email address is included.
Hi there. I feel your pain. We were told that our daughter
might be slightly autistic. We went and saw Anita Barrows who
specializes in this. (Our doctor recommended her.) Within 10
minutes Anita told us that our daughter is not on the autism
spectrum and that whatever is going on with her is workable.
That was four years ago. She also told us that she has seen lots
of kids like our daughter and many of them ''out grow'' their
differences by the time they are ten. Our daughter is now eight
and it seems like Anita's predictions are coming true. Our
daughter has received help from OTs etc and is doing very well.
I would definitely make an appointment with Anita. She is a
wonderful person to work with. Good luck.
I have been there
Oh my gosh! I can totally relate to where you are so I just had
to respond to your posting. Last December we were told that my
son could not continue at his private kindergarten without a
shadow aide. His behavior included not relating well to other
kids, hurting other kids, yelling at the top of his lung for 20
minutes, and running outside and hiding in bushes when he knew
he had done something wrong. He had to sit in a chair outside
the group at circle time because he said the other kids were too
close. They had a teacher with him at all times to make sure he
didn't hurt other kids. They had tried all kinds of things
included the favorite "sticker chart" and nothing was able to
change his behavior at school. But, like your son, he didn't
really fully fit any of the "disorders".
Knowing that there was no way we could afford a $50/hr aide to
attend school with him I went into SuperMom mode. We consulted
a child psychiatrist who observed him in the school setting. He
initially suspected Aspergers but ruled that out in the private
session, then tested him ADHD and that didn't really fit
either. There was a lot of aggression but when he was in the
right setting he could totally function fine and could fully
concentrate when he wanted to. We also had him evaluated by an
OT for SPD and there was no clear diagnosis there either. I
tried to get an appt with Dr. Brad Berman, a recommended
developmental pediatrician. but the first available was 9 month
out so that wasn't an option.
I read every single book I could find on ADHD/ADD, Austism,
Aspergers, allergies, and SPD. One that really blew me away was
Healing the New Childhood Epidemics by Dr. Kenneth Bock...it kind
of follows along the lines of Jenny McCarthy's experience with
But- again - it seemed my son wasn't autistic or ADD but
something was definitely wrong so I took a little bit of
everything from all the books and threw it all at my son to see
what might make a difference. I did lots of probiotics to work
on his gut, started daily fish oil capsules (Dr. Sears kind),
and was diligent about multivitamins every day. We started
giving him a high protein yogurt smoothie with fruit every
morning for breakfast - that was from the ADHD books. I was
ready to embark on the gluten and dairy free diet as a cure but
it was SO intimidating. A good friend recommended removing
everything artificial from his diet - she said it had really
helped with her son and his SPD. I decided to first to start
with the removal of the artificial stuff would make a
difference - that was much easier to handle than gluten/dairy
free. We read labels for everything we gave him and made sure
it was free of artificial color (including annatto); artificial
flavors, artificial preservatives and artificial sweeteners. It
is a lot easier than it sounds -just shop at Whole Foods and
Trader Joes. I was meaning to have him tested for wheat and
dairy allergies but never got around to it - would have been my
Well, we enrolled him at the public school mid-year, fully
expecting to be utilizing their assessment and treatment
services for special needs kids. He had an amazing teacher and
a wonderful school and who would have guessed - absolutely no
issues. Well, okay, I think there were a couple minor issues in
the first month but that was all. Now, almost a year later we
have a child in first grade who completely "normal" and is doing
fantastic - we are getting notes from the teacher saying what a
joy he is to have in class. When I get those notes I think back
to where we were last December and how far we have come. I even
cancelled my appt with Dr. Berman because it would have been
pointless. My son now says he is "allergic to artificial stuff"
and makes sure I remember his vitamins in the morning. He will
still have something questionable once in a while at a party or
such and we often see a direct result in his behavior, but it is
a temporary spike that we can deal with. I don't know if any
one thing or the combination of all the things we did that made
a difference but we are sticking with it and are thankful for
Please email me if you would like to talk more about our
experience - I couldn't fit everything in the space of this
newsletter - even in 3 parts!
I know that hearing the ''A'' word applied to your child is
frightening. Please know that the autism spectrum is truly (almost
unhelpfully) vast and is often applied to children that have any
number of challenges that impact social communication and interaction.
My son was identified as being on the autism spectrum at 3 years
old. We qualified for services from our school district (OUSD) and
through their language-enriched preschool program, he has made
extraordinary progress. He is a smart, funny, social, quirky kid and I
would not change anything about him.
In my experience, seeing someone who specializes in ASD is your best
bet. Pediatricians tend to dismiss concerns unless they see things
like no eye contact or no speech: the more profound markers of
autism. Our son is affectionate, verbal and outgoing - very unlike the
portrait of autism you're used to hearing about - and our doctor
assumed for that reason that he was fine.
Also know that you are not alone. There are a lot of families who have
gone through the same thing and are happy to provide support and share
Remember, your son is still the same great kid he was before anyone
said the word autism.
Please feel free to contact me if you'd like to connect directly.
I would recommend a Developmental Pediatrician. Unfortunately, seeing
one could take some time. They usually have long wait lists. I know of
Dr. Deborah Sedberry whose waiting time may not be as long, a few
months. Also, Dr. Brad Berman is an excellent Developmental Ped, but
can take up to one year for new patients to get in. Both Doctors are
in Walnut Creek.
Hi Sad and Frustrated - I'm looking forward to the responses to
your message. I, too, have a (now) 6 yr old who entered
Kindegarten and starting receiving diagnoses that ran the gamut.
My little guy doesn't fit in any one category either and it is
SO frustrating trying to get him help when I don't know what he
needs or where to turn. He also has some sort of sensory
disorder and has been labeled autistic to aspergers to ADHD.
I wish I had someone to refer you to but I haven't found anyone
yet. And all the specialists I've seen all have different
opinions. I just wanted to say you're not alone and it is scary,
frustrating and sad. I wish you the best
Navigating the IEP
Since autism is genetic and results in specific brain changes
that can be seen on an MRI, has your child already had an MRI to
confirm the diagnosis of autism? Is there another case of
autism anywhere in your family? Is your child's father older
I hope you can rule out autism. My friend who is an older
teacher thinks that many boys are being diagnoses with borderline
disorders when all they really need is more exercise and more
intense exercise. Remember when boys used to ride their bikes
and climb trees all day?
The Regional Center of the East Bay, or whatever area you are in,
does free evaluations for ASD (Autism Spectrum Disorders). Their
clinicians are generally considered experts in the field. You
can go to regional centers on google and find the one for your
It is better to get a definitive answer than to wonder. Even if
your child does not have an ASD, the regional center psychologist
can give you recommendations. There are several physician's who
also diagnosis ASD but I understand their waiting lists are 8 -
10 months and regional center has guidelines that allow only 120
Please call them as soon as possible and keep calling if you do
not receive a call back from them. Ask for intake.
Someone in the field
I am a speech-Language Pathologist, and I work with children who
have language difficulties. I'm not experienced with autism
specturm disorder or I could recommend my own therapy service,
but I can recommend a couple of clinics that have a very good
reputation for ''getting to the bottom'' of making a diagnosis,
whether that is on the spectrum or not.
UCSF has a clinic that is designed especially to diagnose autism
spectrum disorders. They have a multi-disciplinary team to
assess, including an MD, psychologist, speech therapist,
physical therapist, etc. I think it's important to get a
correct diagnosis so you can provide your son with the help that
he may need, early! Don't wait or give up.
Another place to look into is the Bright Minds Institute. Dr.
Fernando Miranda is a neurologist that I work with in a hospital
setting with adults. He is the founder of the institute and has
been featured on Good Morning America talking about autism and
how we are diagnosing children with all types of disorders that
involve how the brain works, but we are not regularly doing any
imaging of the brain to add to the anectodal evidence and
behavioral observation. They have a Web site you can find their
information and number there. They also have a multi-
disciplinary team to do the assessment.
Best of luck! And do not get frustrated, you are doing the
right thing by trying to find answers so you can help your son,
and you will find them!
there is a helpful yahoo email group at
You got lots of good advice and referrals; I hope they help you
get what you need for your son. I just have to share that our
experience with Brad Berman, developmental pediatrician, was not
helpful at all. We spent a lot of money for an evaluation but got
no more information than we came in with. This was several years
ago, but he missed our son's Asperger's diagnosis. So unless,
he's gotten better at identifying the milder forms of autism, I'd
recommend finding a specialist with more experience in the autism
our son had what seemed like an asperger's diagnosis last year.
the first expert claimed he had it, before meeting him
practically, the next few claimed he didn't and once we read more
that made sense to us too. my understanding is that autistic
kids do not have a sense
of themselves as being like other people--so teaching them
behavior by using empathy does not work, it is not a way to help
them understand how to interact socially. it is a common route
to teaching kids these things, and totally dead ends with
autistic kids. beyond this though are a wide range of kids who
are developing socially at different speeds, who are not
autistic. there are signs on the buses also saying a kid is
diagnosed with autism every 20 minutes.
it appears to me that there is an epidemic of autism diagnoses
going on--this is catching kids who need special help but also
kids who are just not ''average'' socially. it appears to me
that lots of kids are on medication, too, so that ''normal'' is
harder to be these days. we took the approach--what if he
had aspergers, and looked into programs, talked to lots of
experts. having a kid learn social skills is a good
thing with or without autism diagnosed. we found there
were things that we could teach him to help him better understand
how to interact. in particular there is a book social skills for
special kids and
also a bunch of jed baker books (picture books). these were
useful and fun, even though the label turned out to be wrong.
but the drastic measures that were being suggested to us by
the well meaning doctor were unnecessary and would have been
devastating to us as a family, stretching us beyond what we could
handle. and all the people saying we were being bad parents by
not dropping everything and taking him out of school
for these programs etc...they meant well but they were wrong.
it was very hard. if your son is autistic, he has lots of
company. if he was diagnosed as such but isn't, probably he is
just maturing slowly socially, so there are some (maybe similar)
tricks you can
learn to help him handle social situations and to know he *can*
handle them. hang in there, either way, there is no reason to
think his life won't be great!
My son (29 months) is receiving speech therapy and OT for speech
delays and sensory issues, and both therapists have recommended
an evaluation for ASD/PPD. We're working with RCEB (Oakland)
but he cannot get into see a neuro/psychologist until late
October -- at which point it seems the docs won't see him
because they are limiting their testing to 18-30 month old
Anyway, we have the means to have him evaluated privately,
although I understand from speaking with out pediatrician that
the wait will be several months regardless of which route we
take. My question is -- for those of you with experience with
RCEB/otherwise -- would you wait and go with the RCEB provider
or work toward getting a private developmental pediatrician?
Interested to hear about your experiences.
in limbo. . .
Regional Center needs to evaluate your child NOW. ASDs need early
intervention, so you need information ASAP. You can appeal, you
can push them to do the evaluation sooner. Regional Center is
supposed to provide treatment for ASDs from birth to three years,
then the school district takes over if special education services
are deemed necessary (you can get this free evaluation from your
local school district just before your child turns three years.
You might consider using a private evaluation to bolster your
demands for services from Reg. Ctr. Be warned: you might get
conflicting results from the evaluations--but at least you've
started the process. In my experience (personal and
professional), parents do best when they know their child's
rights (ADA, IDEA, etc.) and don't take no (or ''we'll do it
later'') for an answer. wrightslaw.com has some helpful info. Good
A mom and psychologist
I'm a little confused about your situation and have a lot of
questions, but I'll just say that in general, if you have the
means, absolutely do NOT wait. If you're headed for a diagnosis,
get it and start services BEFORE he turns 3 and leaves the
caseload of the Regional Center because, if you thought the RC
bureaucracy was bad, wait until you hit the school districts!
My son was diagnosed privately and it just made the RC eval
process that much easier. They still provided services, but since
we already had the dx we were able to skip a lot of the steps and
head straight for them. I recommend Dr. Erica Buhrmann in Albany
Feel free to contact me directly.
If you can afford private evaluations, get them. It doesn't prevent you from getting
an evaluation from the RCEB, too. So get both.
My experience is that RCEB services are inadequate. My son's presenting issue was
a speech delay (he didn't speak any words except mama until 3 1/2 years old).
They evaluated him twice only for speech even though I requested other
evaluations. At 3.5 he qualified for twice weekly group speech therapy for the
school year. At 4.5 years we moved to another area where he received a full
evaluation of speech, occupational, physical and cognitive areas. He had a spectrum
of issues beyond speech and presented at a borderline mentally retarded level.
They placed him in a therapeutic preschool. His cognitive development is now way
beyond the borderline stage, his speech is about 80 per cent understandable, he
uses full, complicated sentences, has a strong vocabulary, can write his name and
can read simple words like ''and'' and the names of his friends. Amazing progress!
These are services we never would have received through the RCEB--partly because
they delayed evaluating him even though I pushed and pushed. He's fully ready
academically and socially to start Kindergarten on time this fall--until last year I
was planning on a late Kindergarten start.
Perhaps with the opinion of the other therapists, you will have better RCEB
experiences to report. (My son's pediatrician never accepted my conviction that he
had significant delays, instead insisting he was developing normally.) But my sense
is the RCEB is overwhelmed or underfunded, handle their limited resources by
stalling evaluations for services, and once services are given, they aren't adequate.
Not a RCEB fan
We were in your shoes and we got the private evaluation. You can
show the results to the RC and most likely they will adopt them.
If your son is on the spectrum and could use some additional
services, those services are paid for by the RC until age 3 - 36
months. If you do not get a dx by 3, or are too close to 3, they
will not start paying for the services. It is best to have those
service in place if only for five to six months (like was the
case with us) when you move on to dealing with the SD at age 3.
You have a better chance of retaining them.
I am seeking advice about diagnosis and treatment for my 3 year old
son, who may show some symptoms of mild Pervasive Developmental
Disorder Not Otherwise Specified (PDDNOS). One one hand, his
intellectual development seems very strong: at 3 he can read almost
anything. On the other hand, he seems unable to participate in a
spontaneous, two way conversation. Instead, he usually repeats the
question asked of him. Other possible signs of PDD include: lack of
any imaginative play (when we suggest it, it upsets him); mixes the
pronouns ''I'' and ''you''; and strong adherence to routines. Do you
have recommendations for assessments, such as a developmental
pedatrician and/or recommendations for seeking treatment for a
relatively young child. Thanks much.
You can request a free evaluation from your local school
district. What you describe does sound like PDD-NOS, and the
language delay alone would make your son eligible for special
education services (language/speech therapy and possibly a
special preschool). Early intervention is essential, so please
call right away.
A mother and professional in the field
it's important to be evaluated by a neuropsychologist...elea bernou phd in lafayette is
quite good...maybe berkeley therapy institute might have a referral...there are a lot of
alternative therapy options but it's important to first get tested..this sets the stage for
the bulk of therapy which will be at school...the younger therapy is started, the better
Once he is 3, the school district is responsible for providing services to him if he
qualifies. They will do an evaluation, but they do not give a diagnosis. I believe you
can still ask the Regional Center for an assessment, otherwise ask your doctor for a
referral to a developmental pediatrician. (If your health insurance is like mine, they
might try to weasel out of paying for the assessment even if it is supposed to be
covered.) I would pursue the school district evaluation and a regional center or
private assessment simultaneously, since the wait is so long (the school district has
to do their eval within 60 days of request, other asssessments can take 2 - 3
months) but, if the school district does agree that he qualifies for services, I would
try to stall the IEP meeting until you have the final assessment from your own
doctor, which hopefully will be more thorough. Although I am happy with the
services that my son is getting through the school district, I just wish I had gone
into it feeling more informed and in control, and he did have some issues that were
not being addressed initially that I had to press for later.
As for other treatments, there is a lot available out there. A full developmental
assessment can help you decide which ones you need to pursue. The traits you
described sound consistent with hyperlexia, but again, I really recommend a full
assessment by a professional.
I am looking for information to help an autistic
4-year-old boy. The mother does not have much
community/school support. But she really wants to try
her best to help her kid at home and possibly to
educate the preschool teachers as well. Her son has
language delay and some other characteristics of
autism but seems to be high-functioning kind. Any
information and advice you have on this topic is much
Thanks a lot.
My pediatrician thinks that my 3 year 1 month old daughter is mildly autistic
and wants us to have a developmental assessment. I have been looking into this
and the wait times for this are extremely long when we are feeling so anxious.
We are getting on the waiting list at Children's Child Development Center and
have also contacted the East Bay Regional Center. Has anyone had experiences
good or bad at these two places? Does anyone have any experience with this type
of evaluation they are willing to share? What can I expect? What can I expect
with this type of diagnosis? Can anyone recommend a really sensitive great child
psychologist who could do the assessment privately? If you would be willing to
talk to me about your experience with this I would greatly appreciate it. We
are pretty terrified at this point. My daughter is very outgoing and
interactive with adults and children (although not with her pediatrician!), has
some problems with limits and has been having trouble with language and
pronunciation. Her speech is indistinct and words she used to pronounce
correctly are sometimes now slurred. She used words earlier than her peers but
then progress seemed to slow down and now her inteligibility is not good.
Strangers often do not understand her. Frankly, I don't view her as autistic
but I am worried about the amount of rhyming that she does. She does it
interactively with us and also babbles and rhymes talking to herself alot. She
sometimes uses a singsong tone that people have commented on. (We are on the
wait list for a speech eval. at Herrick.)
For a developmental / psch-ed assesment, you might want to try the
Raskob Institute in Oakland (at Holy Names College) ph. # 436-1275 For
a speech and language assessment, try Sue Diamond.
For an evaluation try Brad Berman, the PDD clinic at Children's Hospital,
Behavior Analysis (I think that they are in Concord, they are associated
with STARS school in Walnut Creek), Bryna Seigal at UCSF. The Regional
Center is a good thing to hook up with, but I believe that you need a
diagnosis before you can receive services. CALL ME, I have an 11-year-old
autistic son. Jean
Mary Crittenden, Ph.D. in the Department of Behavioral and
Developmental Pediatrics at UCSF is very experienced and knowledgeable
and wonderful with young children (and parents).
Carolyn Johnson, Ph.D. at Children's Hospital, Oakland's Department of
Psychiatry, also wonderful with small children, is an excellent
neuropsychologist who works in an interdisciplinary team that has a
lot of experience with autism spectrum disorders.
I have worked with both of them and would bring my own child to them
without a second thought.
I don't know if either do private assessments, but if you couldn't get
in through UCSF or CHO, it's worth investigating.
I recommend getting a referral from the pediatrician to a private
psychologist or developmental pediatrician and speech therapy team.
There is an excellent team at the UCSF Mount Zion Pediatric Group.
Autism is actually pretty complicated to diagnose and in any event,
you want to know as precisely as possible what is happening with
your daughter's speech, and how to intervene. Be pushy and avoid
waiting, if you can. Some people believe that early intervention is
important with autism.
The East Bay Regional Center can provide various kinds of resources
if you need them.
In response to parents seeking professional diagnosis and consultation
for Aspergers Syndrome and autism, I'd like to recommend Dr. Edward
Ritvo, an internationally recognized researcher and diagnostician in
the field. Dr. Ritvo has studied autism for over thirty years while at
the Neuro-Psychiatric Institute at UCLA, and now he and his wife Riva
run the Ritvo Clinic, in Los Angeles. He is one of the absolute best in
his field, and may be reached at 310 476-5109.
Just diagnosed with autism
Our son , 7 1/2, was recently diagnosed with Autism. Would love to meet other
like families to talk & share. We are reeling still and feel a bit lost. We're in
A good friend and colleague of mine who also happens to be the parent of one
child diagnosed with autism and one diagnosed with Aspergers recently co-
authored a wonderful book called Parenting Your Child with Autism. The book
starts with the premise that there is no ''prescription'' for how to handle your
child's needs, and as such they help explore ideas and resources so that you can
evolve your own strategy for what is going to work for your family. The book is
evidence-based (with references) but it's not too jargony and it's an extremely
readable work. You can find the book on Amazon.
I know from experience that you are at the start of a difficult path, but reaching
out for support is so wise. I have a 15 year old autistic son and my learning
curve has been steep and rocky! I'd be happy to get together with you and also
know others who might be interested. Sending you good thoughts.
My son was diagnosed as being on the autistic spectrum. Five
months ago, when we received the diagnosis, I felt so hopeless.
Now, after working with therapist and using a bio medical
approach, my son has improved so much. So now I have two
questions on this 1) Am I doing everything I can to make sure
that he continues to improve and learn? 2) I know that most
experts say that autism never goes away/there is no ''cure'', but
have any of you had experience to the contrary? Maybe I'm just
kidding myself, but I've seen so many great changes in my son,
and family and friends are saying the same thing. I have
thoughts that in a couple of years, he'll be a ''regular'' kid.
But is that really possible? I'm trying to remain hopeful, but
I also want to be realistic about the future.
I do not know if autism ever goes away. I do know that childhood
does. Don't loose your sons childhood chasing something that may or
may not happen.
I have a 5 year old who has been diagnosed with autism. We have
learned to make decisions based on ''at what cost''. I do not mean
financially. I mean at what cost to my sons dignity, the trust he has
in me, and the family as a whole.
I have called it ''The Velveteen Rabbit'' method. I love Sam so much
his fur might get worn off. Knowing there is profound unconditional
love surroundng him I belive he will know he is whole and okay. I
belive in retrospect this is the most important thing.
Find people you trust to walk with you on the long path
ahead. Therapists will come and go as the system requires. Some will
be more connected to your family than others. I suggest you search for
one or two people who will walk with you for the long haul. I was
raised in the Bay Area and now live in PA. Dr. Ann Parker in Berkeley
is one of those people for me. She has expertise in neuro
developmental disorders but looks at the whole situation with
uncommoly good common sense. The other person is Rebecca Klaw in
Pittsburgh. She has a background in education and autism consulting.
Your son is still the same little guy he was before the diagnosis. Go
hug him and remember to make plans mindfully.
Please let me know if there is something I can do for you or you would like
Well, part of your question made me chuckle to myself. ''Am I
doing everything I can?'' That's a question that my friends and I
ask ourselves 24/7. I suppose you could stop sleeping and spend
your nights making PECS cards; are you doing that?? That's not a
serious question, of course, but it seems like there's always
*something* else we could be doing. The truth is that you have to
find a balance between helping to heal your child and keeping
yourself sane. He's making great progress, you're doing
interventions that work, I'm sure you've done your research and
you know your options, what else is there to do? You could dabble
with supplements, you could try your various therapy options, but
if what you're doing now is working, short of developing a crazy
drug habit and never sleeping again, it sounds like you're doing
everything you can. And you have his progress as evidence of
that, if there *was* something more to do, he wouldn't be doing
so well without it.
As for your second question, that's a really tough one. We've had
our diagnosis longer than you have, 3+ years now, and the most
interesting thing I've found is not necessarily how much progress
my son has made, but how much *my* expectations have changed. At
2.8 when we got our dx, I, too, went online and read about kids
making miraculous changes; entering mainstream kindergartens at
the age of 5; nobody can tell there's anything different, etc.
Now, at just past 6, those things have actually been true for us.
He's in a mainstream kindergarten and it's true that most people
can't tell there's anything different about him, upon first
glance. But he still has autism. And he still isn't like the
other kids. We still have years of work to do, I can't imagine
there will come a day when he doesn't need an IEP. He'll never be
a ''regular'' kid, but what does that mean, anyway? I think in
order for you to get answers to your questions, you need to be
able to define your own expectations. What do you want him to do
or not do, and if he doesn't meet your expectations, will you be
okay with that?
I'm not sure if this is helpful to you or not, these are just the
things that I think about on a daily basis! Feel free to contact
Kids do get better. There are a couple members of my autistic
boy's medical and therapy team who simply don't think he fits the
diagnostic label anymore. He still has issues and he needs
several doctors and therapists, but he functions fine at a school
with no supports at all - they don't know he ever had a diagnosis.
You sound like you are doing all of the right things, exploring
options and enjoying his successes. However, I've worked with
children on the autistic spectrum for over 20 years. First of
all, a child's long-term capacity for progress is dependent
upon the severity of the disorder's impact on his/her primary
areas of development (motor, intelligence, communication,
social, and self-care skills). It really differs from child to
child, with some learning to talk and others not, for example.
Early intervention is best (2 to 7). But we are talking about
progress from where his own ''baseline'' was, not becoming
a ''regular kid.'' That's the tragedy of autistic spectrum
disorders. I'm a mom, too. You are being a good mom in
exploring the methodologies (diet changes, OT sensory programs,
TEACCH workstations, picture schedules, PECs system), but be
VERY wary of anything that is potentially harmful or overly
expensive (shots, pills, etc). There are alot of false
promises out there because, with the rise in ASD, this is where
some salespeople are targeting you fragile parents. If you
connect with a good OT, speech therapist, and teacher in your
school district, they can explain so much to you and give you
strategies for home, too. You will be better equiped to
recognize and celebrate the ''baby steps'' of progress your child
makes if you are not holding onto false hope for a cure.
Forgive my bluntness, please. You really sound like a good
mom. I just feel that too many people are steering parents in
the wrong direction, only to have them end up with the same
child they had before, only with much less cash in their pocket
and lots of frustration. I wish you and your family the best.
there is a lot that can be done ranging from behavioral, nutritional,
chiropractic, exercises, etc. I have a child on the spectrum who is
now doing much better with school/peers because of specific
interventions....the literature on what works is constantly
changing..most important is to do as much as you can as soon as you
can if you'd like to discuss send me an email
Even ''regular'' kids need lots of care and attention, and even
''regular'' kids can go through a rough patch in their development.
Because your son has had such a wonderful therapist and has made
so much progress, he might actually be better off than a
''regular'' kid who did not have such a caring and devoted mother.
Although the experts you've consulted are correct about autism
being genetic, that doesn't mean it can't be treated. My parents
were both obese, but by being extra careful about the number of
calories I consume every day, I've managed to compensate and to
maintain a healthy weight. The fact that your son has improved
so much shows that you have taught him how to overcome many of
his genetic disadvantages. He might end up better off than some
Luck of the Draw
You don't really provide enough information for us to answer
either question! As to whether you are doing enough: if he's
over 3 years old, you should be in contact with your school
district to request a district assessment and start
district-based services. If he's not, you should be in contact
with the Regional Center where you live to have THEM assess him
and suggest a set of services. Is he speech-delayed? Autism
spectrum kids often are, and speech services are helpful. Does he
have sensory issues, like hypersensitivity or, inversely, low
sensitivity? You could start some OT for this. Any tantruming, if
young? Sometimes ''play therapy'' can work. Can you afford to pay
for more than you are already doing? If not, asking the question
will just frustrate you!
As to your 2nd question - well, if you load on services now, you
may find that the ''autism spectrum'' diagnosis was just the
closest thing anyone could get to describing your kid at this
age, and that as he grows he will change, improve, have fewer
symptoms. Would that happen without the therapy? Will it happen
if you do nothing? Who would take that risk to find out?
My now 12-year old is a hugely different kid from when he was
diagnosed at 4, and is doing great. Is he typical? Heck no. Is he
pretty happy and being educated well? Yep. So while I don't think
you would say he's ''cured'', he's not at all the screaming,
inarticulate, frustrated kid he was at 3, now that he has a lot
of modalities in which to express himself!
hope that helps. Provide more input, and you'll get more specific
- Been there
I just wanted to write some words of encouragement on the bio
medical approach. The daughter of my best friend in Chicago
also recieved the same diagnosis a few years ago. Through bio-
medical/alternative therapies/supplements and changes to her
diet she is now completely functioning. Now at four years old,
she is doing so well that she was accepted into the gifted
program in the Chicago Public Schools for next year. What you
are doing can only help your son, and at least you will know
you've tried everything you can.
At an autism conference at Children's a few years ago a parent
asked whether autism can completely go away and your kid can be
totally fine. The presenter replied that if that is the case
there was a misdiagnosis in the first place. Don't forget that
there's not 'hard' biological marker for autism right now.
People will evaluate your kid and then based on what they
observe they will give your kid a diagnosis. Later if your kid
is observationally 'normal' it means the diagnosis wasn't the
right one to begin with. It is all based on observation and not
on any 'hard evidence' which means that there is a lot of
misdiagnosis and revision of labels. I myself have a kid who
has been 'misdiagnosed' or was it a misdiagnosis? Who knows?
We have a hard to label kid so we've gotten lots of labels. I
try to remind myself that this means there's a limit to
professional knowledge and try to maintain a healthy
skepticism. Right now, many professionals are happy to give
kids an ASD diagnosis. My feeling is that if your kid seems a
little funny that's one of the labels they'll get. In 50 years
if we find a hard marker for autism everything could change
and 'woops, sorry for all your heartache' but those kids aren't
really autistic after all. Don't forget that back in the day
when only kids who were non-verbal, self-stimming etc. were
labeled autistic the cause of autism was believed to be a
rejecting 'refrigerator' mother. The state of science will
change...As for are you doing enough, I commiserate with that
feeling but don't have any answers. I think it is important to
focus on what your child needs and find their strengths and try
to ignore the labels unless they are helpful or feel accurate to
My 2 1/2 year old son was just diagnosed with autism and my
husband and I feel at such a loss regarding support, resources,
tips, advice. We have another appointment this week to find
out more about therapies, but we just feel like we are
floundering in limbo and would love if anyone could point us in
the right direction about what we should be looking for in
regards to therapies, support networks, etc.
We live in Walnut Creek but will travel whereever we need to to
find out more or to help our son. He was supposed to start
preschool in the fall, but my hunch is that we will need to
look for something that better meets his needs and would love
any advice from parents who are in or who might have been in a
Our hearts are breaking that we didn't realize there was a
problem sooner..I guess we were guilty of just assuming these
traits (limited eye contact,delayed speech, little interest in
other kids, etc) were simply indicative of his
personality...having no idea that they were such red flags for
autism. So at this point we want to do whatever we can to learn
what we can do for him.
A sad Mom who knows things will get better...but is just
crushed right now
I can imagine that this kind of news is hard to swallow.
Blissfully there is much more we know about Autism now than a
decade or two ago, and there are different treatment approaches
to choose from.
You may get MANY responses, so I will be brief
An excellent consultant in this area is Dr. Ilene Lee -
email is ilenelee[at]aol.com. She specializes in Greenspans floor
Another approach is the work of the KAUFMANs of the Option
Institute. You may find their book SON RISE intriguing. They
developed their method for working with their son and totally
CURED the autism ! I met him when he was in his late teens.
They have an institute on the East Coast. You can Google them.
Treatment gets costly but early intervention will make a WORLD
Dr. Ariel Lenchner
(my specialty is early literacy and learning disabilities)
First, let me say that I'm so sorry you're having to go through
this. Having lived with the dx for about a year and a half, I
can say that the hardest part about the whole thing is the
heartbreak of it all. I worry all the time about how he'll be
when he grows up, how other people will judge him, how other
people judge him now, how he feels about it all, etc.
You have so many options right now and I'm sure it feels
overwhelming. In fact, I'm pretty sure I posted a message
similar to yours when we first found out. Your son is under 3 so
you qualify for services at The Regional Center, which should be
the first place you call if you haven't called them already.
Please feel free to contact me directly and I'm happy to share
with you everything I know and have learned over the years. I've
been where you are and I'm more than happy to help!!
Hi, You are right, it will get better. There is a myriad of
information and new therpies out there for this condition. You
are not alone, the percentage increase in Autism in the last 10
years is staggering. There should be regional centers in your
area that can offer help and advice. Parents Helping Parents
website is usefull. They are located in San Jose. Occupational
and Speech therapy are very usefull, along with dietary
modifications,such as gluten free and caseinne free diets. There
are doctors that specialize in DAN (defeat autism now)
protocals, my therapy-The Sensory Learning System has proven
very valuable www.sensorylearning.com. There is also Auditory
Integrative Training, and hyperbaric oxygen therapy to name a
The bottom line is Keep Trying, the therapies and dietary
modifications do improve quality of life.
You may not realize it now, but the fact that you recognized
the autism at 2 1/2 puts your child at a great advantage. He
is able to get the therapies he needs much earlier than kids
who are diagnosed at 5 and 6 years old. My son was diagnosed
at 3.9 years old and although the ''autism'' doesn't go away, I
see his potential now and I know it's because he got a head
start. You have an even earlier start. I was sad too, my
feelings were very similar to yours. So I will just say what I
wish someone would have told me at that time of getting the
diagnosis: Instead of looking at what he can't do, think of
others ways he will be able to do it. You'll spend the rest of
his life looking for alternate ways for him to learn. You will
appreciate every accomplishment, not just the ones that every
other parent witnesses and you will never take another one for
granted. He is a special blessing and I have learned so much
from mine in his eight years, so much that I wouldn't change a
thing about him.
Mom to a PDD Kid
I'm very sorry to read about your difficult situation. Although I
do not know much about the topic, I recall Mothering Magazine
issued a Special Autism Edition in their Jan-Feb 2006
publication. You can buy back issues at mothering.com. The site
may have further resources to help, too. And I am sure this
community will give you plenty of useful advice.
I read your post and had to reply. I recommend calling the
Department of Communicative Disorders at Cal State East Bay
(Hayward) and speaking to Audra Elliott SLP-CCC for resource
information. Additionally, web information is invaluable. I
actually have several excellent autism books/resources that I
could allow you to copy as well as some websites that I have
found to be helpful. There are MANY therapy choices available
and it will just involve alot of research on your part.
Unfortunately, there are no easy answers here. I wish you luck.
Was your son diagnosed with Autism from a private developmental pediatrician or
neurologist or from the Regional Center?? Whoever gave your son the diagnosis
should have also given you or recommended a developmental program to address
his needs. If you are connected with Regional Center, your case manager would be
able to assist you with a program (no cost to you). This is an organization that
assists the developmentally disabled population and in your son's case (early
intervention)...can set up a program for him. Most families chose an ABA program
along with speech and occupational therapy if needed. It depends on your child's
needs. There are also a lot of support groups out there. You can seek services
independently but it can be very costly. If you are not connected with the Regional
Center of the East Bay...the number is 510-383-1200. Ask for the intake/
assessment unit for children under three. good luck to you.
First of all, there's a new novel out called Daniel Isn't Talking
that I think would be great for inspiration. Also, there are a
number of list servs on the web that can be very useful with
things like locating resources, getting information, etc. If you
can't find them you can email me at www.ayeletwaldman.com and
I'll hook you up with a very experienced and generous mom.
Hi - I am an Occupational Therapist who has worked with many children with
Autism. I'm sure you are freaked out and sad and going through your own process
right now. But let me just chime in and say that the Autistic kids I have worked with
have all been such happy little souls that I never felt sorry for them for a minute.
It's the hardest for the parents to readjust their expectations, negotiate therapy,
home programs, etc. But there is so much amazing work being done with Autism
right now that you will be able to find lots of tools, therapists and teachers to
with you to make his life great. For now I suggest you call Regional Center of the
East Bay and ask them how you become a client. Typically you get a referal from
your doctor. Regional Center provides in home therapy to kids until they are 3 and
in the school system. You will have access to speech therapy, occupational therapy
and a home based teacher to come out and give you things to work on at home. So
call them right away so he can get care before he's 3. When he turns 3 he will
receive school based help from the school district. And I would try to just keep
enjoying and loving all the things you love about your son before you even had a
diagnosis for him. The diagnosis will help you/him get the help he needs to
flourish, but don't let it limit his unlimited potential as a person. Best of luck,
There is hope for your son! There is a wonderful Doctor who is
specialized in working with kids who are autistic. Many of my
friends are in the same situation that you are and have greatly
benefited from seeing Dr. Dave Traver. Best of luck to you and
Here is his contact information:
Dr. Dave Traver M.D., FAAP
1261 E. Hillsdale Blvd.
Foster City CA 94404
You'll probably get a lot of recommended reading but I would be
sure to read The Impossible Cure by Amy Lansky and then go see a
Into the alternatives
My daughter was also diagnosed at 2.5, and I remember that fear
and guilt like it was yesterday. My heart goes out to you!
Now, a year and a half later, I have learned so much, grown so
much, and seen so much amazing power and advancement in my
daughter that those first days seem like a lifetime ago. You
are not alone! There are so many wonderful educators and
resources out there, and you CAN access them. Please write me,
and I will give you all the help I possibly can
May 15th TIME Magazine had an interesting article on autism and a
model treatment program in the schools. The good news is your
discovering it at such a young age, there are volumes of
resources and treatments.
There is such a wide range of functioning on the spectrum of
autism it's difficult to recommend the best treatment. 50% of
autistic children will never speak according to 1995 statistic I
learned at a PECS conference for lower functioning autistic
children. It sounds like your child has some speech.
Hopkins pre school in Berkeley has provided services (including
speech therapy)for many children on the spectrum starting at age
3. Alta Bates in Berkeley also has treated many early
intervention and pre school age children. For speech therapy
Michelle Garcia Winner is one of the best known in the area (San
Jose)who specializes in high functioning autism and non verbal
disorders. It sounds like your child needs lots of verbal
language therapy, pretend play, turn taking, and eye contact. She
may be someone to keep in mind when he is older, or for a
referral. Eye contact may be the only socialization goal to work
on and expect results for age 2-3. Several children without
Autism do not engage in interactive play and interactive
conversation until age 3-5.
I'm not sure of resources in the Walnut Creek Area, but my
understanding is Insurance will cover speech therapy for children
younger than school age.
Hope this helps!
I am sorry to hear about your baby. I too have a child with
autism. I would urge you to contact the autism research center
in San Diego. You can find them on the internet. Also find
your local TACA chapter (Talk About Curing Autism Now). They
will be very helpful and even have a new parents guide. There
are lots of advances being made in the treatment of autism. I
have personally attended a Defeat Autism Now where I was able
to see 10 children on stage who have recovered. There are
1000 documented cases of recovery. Good luck to you and feel
free to email me off list if you wish.
Our three year old son has just been diagnosed with PDD-NOS. We
are extremely upset and feel at a loss about what to do next.
We are currently waiting for an assesment from OUSD but in the
mean time were wondering if anyone in the BPN had any advice
about behavioural techniques we can try at home to get us
started while we wait for our assesment. Any advice about good
books or other resources on the subject? Support groups etc.
Most resources I have found on-line seem to address autism
alone which is not the part of the spectrum that he falls
While you're waiting for OUSD to complete its assessment -- and
there is a specific time period in which it must be completed,
under federal law (see http://www.wrightslaw.com) -- I strongly
suggest that you seek counseling immediately with a therapist who
understands special needs. Locally, Dr. Lynda Kravitz in Piedmont
(firstname.lastname@example.org) counsels individuals,
couples and groups.
As for behavioral help, look into Stanley Greenspan's books and
don't be afraid to consider therapies that are used for autism.
These range from step-by-step recipes for tasks to learning to
read body language to understanding what causes behavior and how
to encourage or discourage it. Take a look at ''The Out-Of-Sync
Child'' and Carol Gray's Social Stories. Disregard anything by
Bryna Siegel; her thinking is outdated at best.
Also, it would be prudent to consult with a special education
advocate. Parents and school district administrators work best
together when they treat each other as businesses, but it's
difficult to not take it personally. An advocate will help you
stay calm and focus. There are many advocates; an excellent one
is Dana Lear, http://www.negotiatingthemaze.org
My 4 year old is also diagnosed pdd-nos. I can totally
sympathize with the pain, anger and shock you must be feeling
right now. Know that you are not alone, there are a lot of other
parents who have been there and who are there right now. Know,
also, that a diagnosis of autism spectrum disorder does not mean
that your son will not live a happy and fulfilling life. I know
it probably feels like the end of the world (it did for me!) but
it's not and with support you can get through this.
It's hard to give advice without knowing specifically which
issues you're facing because the spectrum is large and every kid
is different. My son receives 15 hours a week of intensive
therapy (called ABA), and if I had to do it over again, I would
have started it immediately after receiving his diagnosis. I was
a little bit in denial about it, but at some point it became
impossible to stay there. Since starting ABA he's made at least
9-12 month's worth of progress in a 3 month period.
Check out autism-pdd.net for lots of information and an online
support forum. Don't just rely on the school district for an
assessment, call Behavioral Intervention Associates
(www.bia4autism.org) for more information about therapies and
treatment. There's an online support forum in the Bay Area (I
think it's called specialneedsnetwork at Yahoo groups, I'm sure
somebody will post the address). I also have a support group
that meets every other week at my house. Please feel free to
contact me directly if you want to ask questions of somebody who
has been there or if you want to come to our group.
Dear ''worried,'' I am a parent of a child who has a similar
diagnosis and I know how overwhelming it is when you first find
out (and how discouraging it is to have such a non specific, not
very helpful diagnosis). I am currently running a free program
at the Berkeley YMCA for children (ages 3-4) who have
developmental delays. It is called the Swim and Gym Program. It
includes a swim lesson, tumbling class and a support group for
the parents (childcare included). The program is on Thursdays
from 1pm until 3:30. Before I was the coordinator for this
program, my son and I were participants. It was really a life
saver for both of us. Please feel to call me and leave me your
number so I can call you and tell you about the program. Or,if
you are not ready or able to dive into the program, but would
like some resources, I can give those to you. Hang in there,
You can try a book, The OASIS Guide to Asperger Syndrome by Bashe & Kirby. Also,
check out the MIND Institute at UC Davis. Great websites about learning disabilities
and developmental issues are Schwablearning.org, LDonline and Allkindsofminds.org.
a school psychologist
Hi -- I'm not familiar with OUSD but have first hand experience
with PDD-NOS (my son was diagnosed at age 3 and is now 6). Send
me a note and I'll send you my phone number and I can give you
some guidance. Judy
Your child is so young that it's hard for anyone to give him a
more concrete diagnosis! We were there at age 4, and also had
the ''not autism but something'' diagnosis. My advice to you is to
review some of the autism material, selecting by symptom
grouping. For example, if your child has a speech delay, get him
speech therapy asap! and private, one-on-one to supplement if
you can afford it.
If you feel he has a hard time in social settings, or with
personal control (tantrums etc) have a look at the sections of
autism writings that deal with this topic. If he has sensory
issues and could benefit from OT, this is often covered by group
My son is 10, and we have pursued a lot of similar therapies in
the 6+ years since his diagnosis with PDD-NOS. Now he has moved
out of that diagnosis, and we work under ''learning disability''
but same basic symptom groups: Social pragmatic language and
social skills, horrible handwriting / drawing (fine motor skills)
and some other learning difficulties due to different brain
wiring. But it will be years before you can get to such specifics!
Things that often help PDD-NOS as well as autism kids: routine,
routine, routine; multiple sensory paths of learning, like
saying, drawing/writing AND movement all to learn a given point;
learning with music; social stories; lots of sensory input, if
he's not defensive about touching.
Some books we have used (do library first! before buying any)
The Child with Special Needs
The Out of Sync Child
The Explosive Child
How to Talk so Kids Will Listen (and Listen so Kids Will Talk)
My Social Stories Book
Lastly, I will be happy to help you if you would like. My son's a
lot older, but I have years of experience dealing with OUSD.
There are plenty of other OUSD parents out there who can help,
too. Please come to the OUSD CAC meetings - the CAC is like the
PTA for special needs kids in OUSD.
The meetings are
usually the 1st Monday of the month.
Good luck and continue to reach out for help.
I would suggest that you look into behavioral therapies even if
your child does not have a full-blown diagnosis of autism. Any
worthwhile behaviorist will base treatment on goals indicated
by your child's behavior and needs, not on diagnosis. Good
What a difficult time this must be for your family. One helpful
book with ideas for parents to use at home is ''More Than Words''
from the Hanen Centre. I am a speech language pathologist, and
the parents of children with PDD-NOS have seen positive changes
in their children and enjoyed the activities from this book. I
(along with many SLPs) use lots of their ideas in therapy as well.
Something else to consider: Assuming your son's language skills
are behind for his age, you might want to find out if speech
language therapy is a covered benefit under your health insurance
and request a referral from your son's pediatrician. That could
be a good way to get some help while you wait for school services
Treatment for Autism
Can anyone recommend an insurance advocate to pursue insurance reimbursement of money we
have spent out of pocket related to our son's autism? Since insurers were required to
pay for autism therapies starting July 1, 2012, we have spent at least $10,000 out of
pocket on a developmental pediatrician, OT and social skills group for our son. We will
spend close to another $10,000 in the coming year. Our insurer has denied our claims.
We both work full time and don't really have the administrative capacity to pursue this.
Thank you in advance for your recommendations! Really? Denied?
Try contacting Kristin Jacobson at Autism Deserves Equal Coverage
http://autismdeservesequalcoverage.com/About.html or Karen Fessel at Autism Health
Insurance Project http://www.autismhealthinsurance.org/about-us . Also, the new
options through Obamacare may help you out...insurers can no longer deny kids for
pre-existing conditions and can only charge a ''sick'' kid twice as much as a
''healthy'' kid, so you might be able to find better coverage.
best of luck
We have a severely autistic 7-year-old son and are looking
for ABA providers serving Berkeley. Currently we have about
15 hours per week of after-school ABA services, focussing on
self-care, life skills, behavior management, socialization,
and so on. We wish to continue these services when we move
to Berkeley in June 2013. Our insurance company, Kaiser,
recommended STE Consultants, BIA, CARD, or ABC, in that
order. Does anyone have experience with these or any other
ABA service providers? Thanks a lot! Mark
Hi! I sent you an email but, figured I should respond here
in case you don't get it. I worked for BIA for years as a
program manager and after having kids started working
privately for families. BIA is a great organization. They
are really supportive and create programs based on the
child's needs specifically. They make it fun. It is amazing
to see the progress happen. I think it works best if the
parent is involved in the process and varies over the work
they do into their daily life (e.g., generalization). That's
when you see the most progress. Of course every families
face challenges but with any program that will happen.
Hilary and Deanne (the founders) are the best in the
business. After my kids get a bit older I plan on going
back. Please feel free to ask any questions.
We used the services of BIA for our son and we were very
happy with them. Our son stopped receiving services almost
three years ago now, but I credit BIA with making a huge
positive difference in my son's life. I have also heard
good things about STE Consultants, but I have never heard of
the other two providers you mentioned. Anon
I highly recommend BIA. We worked with them for 3 years when
my son was younger and I credit them for changing our lives
completely. Feel free to contact me directly if you have any
questions. Jill H
i'm a Marriage and Family Therapist and i see children on
the Autism spectrum within the context of their
relationships and family life. Over the past several years
I've worked collaboratively with STE Consultants and i've
been really pleased to work with them. They are very
respectful of the parents' perspective and always welcome
their input, and the folks i've worked with are very well
trained and mostly awesome with the kids. I've seen them
persevere with some incredibly difficult cases, with skill,
dignity, and respect for the kids they serve. I highly
recommend them! I also want to say that with the increse in
diagnosed children combined with new legislation requiring
insurance companies to pay for Autism treatment, i'd caution
you about asking questions of your perspective providers.
find out how much training their staff has! Best of Luck
with your search! geri
My 3 years old son was just diagnosed on the Autism Spectrum
by Kaiser. Kaiser autism center suggested us to go for ABA
therapy, so I did some research online about ABA; I like
some of the ideas but don't really like the robot-liked
system. I m just not sure on choosing the appropriate
therapies, which can get the most beneficial on him since we
already got late on being noticed of his autism. Also, my
son is going to regular preschool for half day in Castro
Valley, and he is learning from and making progress there,
so I don't want to cut his school hour. The preschool
teachers are saying my son is a strong imitator and he likes
to watch the others kids playing; he just needs a lot of
time to get used to one thing; once his speech catches up,
his behavior issue should be better. Personally I agree with
their opinion, but I don't want to give up any chance to
help him. For sure he will go for speech program. So does
anyone have any suggestion or experiences to share on the
therapies besides than ABA, which would help with the
tantrum and being in the community?
I was in your shoes about four years ago. My son was almost three when
he was diagnosed with autism. He is now in a typical first grade class, has
made some close friends, participates in sports, and is an overall happy
kid. I cannot stress enough how important ABA was to our son and our
family. We received funding for ABA through the Regional Center. If you
haven't yet, you should contact them. Our ABA provider was BIA, and I
highly recommend them (http://bia4autism.org/). It takes a big time
commitment, and it can be stressful, but our son would not be doing as
well as he is now without the many hours of therapy that he did. I also
recommend speech and occupational therapy. In addition, we changed our
son's diet to gluten free and casein free, and gave him certain
supplements. We did all of these things consistently until he was five.
After five, we reduced the therapies, but continued with the diet. Now at
seven, my son goes to a group OT class, and still remains gluten free, for
the most part. I've seen a few parents take a ''wait and see'' approach
because they don't want to label their child or they don't feel the therapies
are worth it, and I see that these children are really struggling years later
because they were not put into the appropriate therapies earlier. It can be
a scary and stressful journey, but it is so worth it when you see the
Hi. I'm a special education teacher. If your child was diagnosed with autism
then you should really go to the school district and request in writing that
your child be evaluated for special education services. Once this evaluation
has taken place and he qualifies for services - which he will if he has
autism - the district is legally responsible for serving your son. Early
intervention is absolutely key for children who have autism and teachers
who are trained to work with such children should be working with your son
- not just any preschool (no matter how exclusive) / daycare provider. That
said, CVUSD has preschool for children who have disabilities. There isn't
just one strategy that works best for any child so you need someone to
work with your child who is studied in many techniques - a special ed
teacher. I've taught older kids with autism and there is a huge difference
between a child who received early intervention services from trained and
certificated teachers and a child who did not. Please go to the district office
asap. I hope this is helpful!
Hi Carrie, I think you are doing the right thing to start
on therapy as early as possible and to research different
options. I do have experience with autistic children and
would be happy to share with you. Kathy
Our 2 year 4 month old son has not be diagnosed with
anything, but has been receiving speech services for the 5
months and Infant Educator services for 2 months. A recent
observation by a psychologist has resulted in a
recommendation for ABA assessment and then therapy. The
assessment is 15 hours a week plus 10 hours for parents and
therapists. That's 3 hours a week one-on-one with our son.
That seems like it's going to take over our life! We are
feeling a little overwhelmed at this point especially given
that both of us parents work full time. Any suggestions or
ideas as to how to juggle all of this? thanks.
I hear you and can sympathize. My son (now 7) went through 1
year of the exact same ABA therapy you are talking about
My 6 yr old received 1-to-1 services 3hrs/day for 1 solid
year. I worked with a sr level therapist weekly for a year.
he is now off that intense program but i still have weekly
consultations to keep him on track. I use the strategies
for my older son as well (9).
Before ABA my 6 yr old was having intense tantrums that were
frankly frightening and totally out of control. He had
severe OCD, anxiety, as well as his autistic/behavior
issues. Now, OCD/anxiety are dramatically lessened,
tantrums are minimal and much less severe and I've gotten
control of his behaviors.
The bad - it is freaking exhausting! Other parents have
absolutely NO idea what we go through. You have to stay on
top of it almost in 5 minute increments throughout the day,
every day, no break. I've learned ABA works only when
parents are absolutely consistent. Once you start relaxing
the strategies, the behaviors creep back up/get worse. It
really is all about changing YOU so you can be more
effective in dealing with your son.
The good-IT WORKS!!!!! Yes, its exhausting but not as
exhausting as dealing with the behaviors BEFORE ABA. I'm a
single mom with TWO special needs kids and I can manage it
(though it is hard).
I have to constantly fine tune the strategies at least on a
weekly basis. I have star charts up the ying yang! But it
works for certain types of kids, including mine.
Here is an example: yesterday my younger son was with his
babysitter. she said 'computer time is over. time to get
off'. he went into meltdown mode - slowly creeping up to a
level 10 tantrum. i heard it and came in the room. he was
getting hysterical. PRE-ABA = we would have had a severe
tantrum with kicking, scratching, clawing, biting for
probably 30 minutes. POST ABA = i calmly said 'i will put
the timer on for 1 minute then you will get off nicely'. i
walked out of the room, put the timer on for 1 minute and he
hopped off and said 'ok mom' and went to play in his room.
What have I learned? With my son, he needs to feel control.
So by giving him 1 minute to get off, he feels in control
of the decision to get off. Pre ABA I would have forced him
like a mack truck to get off and totally clashed with him.
It is that small of a fine tuning that totally avoided a
meltdown. I give a little, he gets a little = we all win.
I would highly recommend doing ABA while your son is young
and you can help him gain control over his actions. it gets
way worse when trying to do this on older kids. You have a
chance now to help him learn a better way to deal with his
Been there, it DOES work
ABA is for children with autism. I'm curious about why it would be necessary if
your son has not been diagnosed with anything? If your child does have autism
then this program is absolutely in his best interest, regardless of the toll it might
take on your life (in my opinion). On the other hand, if he doesn't, I don't know
why it would be needed? At any rate, I had a home program at the intensity that
you describe, for 2 years, and am happy to tell you about how it impacted our
lives, if you decide to do it. I guess the question at this point is: Do YOU think
intensive therapy is necessary?
I have a 23-month-old son who was diagnosed with autism at
15 months. My son participates in 25 hours of ABA per week
(plus PRT at Stanford) because the empirical research
suggests that 25 hours a week is the minimum number of 1:1
ABA hours needed to effect positive change in children with
autism or PDD-NOS. As 30-40 hours a week is really best, we
are working towards this goal. Also, early intervention and
parental involvement are key to successful outcomes, so we
started ABA as soon as possible and are as engaged in his
program as we can possibly be.
Let me be straight...All of this does takes over your life.
Before I had my son I was a ph.d. level researcher. I knew
I couldn't go back to FT work, so I took a PT job teaching
and even that was tough. I spend most of every day fighting
the regional center or insurance to get or keep services for
my son, and when I am not taking calls or writing letters, I
am participating in my son's 25-hour a week ABA program or
taking him to Stanford for PRT (a type of ABA that teaches
parents skills to increase their children's use of
functional language). My husband has also had to make
sacrifices, including taking a lot of vacation days to help
out at home and participate in ABA at home and PRT at
Stanford. I will add that I am currently 8 months pregnant
and have spent my entire pregnancy stressing about my son
and fighting for what he needs.
If ABA was recommended by a psychologist with expertise in
working with young children with developmental delays, I
would take her recommendation to heart and start ABA, ASAP.
How involved you want to be may be your choice. Some
parents have to work outside the home (for money or their
sanity). Others of us are lucky enough to be able to stay
home and participate in ABA more fully. Personally, I'd
like to think my active participation in my son's program,
keeps the quality of his care high, but there is no way to
know for sure.
I dream of going back to work PT soon, but I have chosen to
make my son's therapy a priority right now, as this is a
critical period in his development. I do still believe that
if you can set aside time for activities you enjoy that
don't revolve around ABA, you may be happier. We don't have
a handle on how to do that, yet, but we are working towards
this goal. You might also consider
getting on some of the local Yahoo listserves for parents of
children with special needs (PPSNK,
Our situation was similar. My son was assessed through RCEB
for a 'speech delay' but I was concerned that he was
autistic. They didn't give him an official diagnosis at
that age, but after his evaluation, they recommended 25
hrs/week of ABA + speech therapy. They saw enough red flags
for autism to get him into early intervention. (Later, at
age three, he was diagnosed with high-functioning Autism.)
ABA turned him around, got him connecting and communicating
with the world and people around him. We saw dramatic
changes in his ability to communicate almost immediately. I
was 'at home' with our other son who was about 5 mo's at the
time. So the whole situation was intense. We had
therapists in the home with us during all of his waking
hours...but they were a pleasure to have around. I got used
to it. I didn't get out a lot. I was glad I was home,
because even though I wasn't actually participating on a
daily basis (it's more 1-on-1 with the therapist), I totally
'got' the approach and could carry it into our home-life.
(Things like this really only work when there's synergy with
therapists and how the family works at home.)
You asked about working, though. Early intervention therapy
is meant to happen ''in the least restrictive environment for
the child''. So if your child is in full-time daycare, it
happens there. We had about 4 months where it was happening
in-home. Then he was at a preschool 2 mornings a week and
the therapist was there with him. Then he started at a 4
day/week school and the therapist was with him there for
another 2 months (until he turned 3).
We worked with STE Consultants (highly recommend). The
thing I found most valuable was the weekly team meeting
where all of the therapists and the clinical director got
together to discuss progress. I was there for every
meeting, asking questions, getting advice and insight,
figuring out what to do in the home.
Here's what I would recommend to a working family. Every
week, one of you takes a personal day and is at home to 'be
around', observe or participate in the therapy. Make sure
it's on the day of your team meeting. You'll feel involved.
You don't have to be there every second, honestly. But on
the flip side, I wouldn't want all of it happening while I
was away, because it's so helpful for the parent. If you
can't make a team meeting, arrange to call in.
It's such an important time in brain development, you'll see
measurable improvements -- and this intensity level won't be
forever. But it's worth it. Good luck. PS-6 months after
our ABA wrapped up, I'm back at work full time. My son's in
a OUSD preschool in the morning and 'our preschool' in the
We're starting ABA (Applied Behavior Analysis) with our 2
year old son and I'm wondering what to expect and how to
get the most out of this opportunity. Does anyone one out
there have experience? It sounds a bit intense. We've
been allotted up to 25 hours per week, in-home. He
qualified for services through Regional Center East Bay.
He has a severe speech delay and has delays in his
social/emotional/play/motor to varying degrees as well.
He may be on the high-functioning end of the Autism
spectrum. We don't have a diagnosis yet.
I was blown away by how many hours it is. I just assumed
that it would be once a week, like his speech therapy.
But I guess this is what early intervention is all about.
I'm eager to get started, but I don't really know what to
expect. I'd love insight from anyone who has gone through
it. Here my over-arching questions:
- We'll be working with STE Consultants. Anyone have
experience with them?
- What is it like having therapists in the house all the
- Were you involved with the therapy, or was your child
working one-on-one with the therapist? (Did you get to
learn strategies to help/guide/teach your child?)
- Did they support your child in a day-care or pre-school
setting? How did that work?
- How can we, as parents, help this early intervention to
be as fruitful and successful as it can be?
- Is there anything that you know now that you wish you
knew when you started off?
Thank you! Anonymous
Yep, that's the key to ABA, the intensity of it. We had a
home program that lasted 2 years, 15 hours/week, and during
that time we ''weren't allowed'' to take vacations or be gone
for any extended period of time. I'm a little surprised RCEB
has given you this service without an actual ASD diagnosis,
but he's only 2, that's almost too young, still, to be
diagnosed. It's good that you're starting early, though, the
earlier you start, the better the prognosis.
- We worked with BIA, who I simply can't rave about enough,
so I don't know anything about STE.
- You get used to having people in your house all the time.
At first it was a little weird, and I did a lot of extra
cleaning, but after a while they just became like family
members and I was used to it. It helped that I adored all of
the therapists we worked with (I'm still in touch with all
of them on Facebook, 3 years later) and there was
practically no turnover in the 2 years
- I was involved in the planning of the program but not with
the actual carrying out of it. This is because when I'm in
the room my son prefers to sit in my lap and snuggle and not
do any work, so my presence was more of a hindrance than a
help, that may not be the case for you. If it's a good
program they will work with whatever you have to offer.
- We got classroom support, mostly in the form of
evaluations and recommendations, and also IEP attendance
(that's a whole other thing you don't have to deal with yet!)
- As for how you can help success, I would say just keep an
open mind. These guys know what they're doing, and the first
thing I learned about ABA was that it is ''counter-intuitive''
to what you think should work; a lot of it just went
completely against my natural instincts as a parent, but
that's kind of what autism does to you, it forces you to
change your expectations about what kind of parent you
thought you might be, because it's in charge, and not you.
- I don't think there's anything I know now that I wish I
knew then, we were lucky that we had such a fantastic team
and we saw immediate results. My suggestion for you, just
beginning this autism journey, is to find a support group,
either online or not (online support groups tend to fit your
schedule better) because you're going to need the help and
support of other parents who are where you are or have been
where you are, to help get you through this. Good luck.
I highly recommend getting in touch with Diane Hunter. She is a mom of an
autistic son who knows a lot and is a great resource for everything that goes
along with it. She is now working as a life coach for parents whose children
have been diagnosed, she has an upcoming workshop that looks amazing, I just
can't say enough about starting with Diane. Her website is
I have experience as a nurse case manager for a set of
twins who received ABA in a very tiny apartment! Yes, its
intense, its a huge time commitment, and. . . the kids
showed almost immediate benefit. The parents have
challenges and this mom really stepped up to the plate!
Good luck and enjoy learning about how much your child
Our autistic son has been in ABA therapy for two years with
CARD. He is beginning to use words to get what he wants, and
his behavioral problems (screaming, banging his head,
pica,etc.) started to improve within the first 3 months. I
found from previous experience that the 25 hours a week (40
hours is best), is absolutely necessary.
It is not easy to have people in your house all the time,
but you will become accustomed to it. Therapy can also be
done on outings if the therapists are open to it.
If you want to make sure the ABA is successful, you must
know what your child is working on and be sure to reinforce
it. All will be for naught if you cave to temper tantrums,
or it just seems like too much work to do it the ABA way.
Nothing is worse than having to start over when the
therapist arrives every day.
ABA is a scientifically based therapy for children on the
autism spectrum. To get yourself introduced to ABA therapy,
it would be helpful to research a bit about the founder of
ABA : Dr. Lovaas.
ABA is provided in a 1:1 setting, by a behavior tech (up to
2 or 3)/supervised by a senior consultant and is based on
targets or goals in which data is collected to measure
progress. The targets are typically based on an initial
assessment. The targets, especially if these are regional
center funded services, will focus on getting your child
ready for the community - communication, potty training,
behavior, eating, dressing and self help skills.
Studies have proven that a program of 25-40 hours per week
is the most beneficial to young children r.
I have worked with STE on special education cases and have
had the opportunity to work with many ABA providers across
the state. I can only speak as a special education attorney
and say they are excellent at what they do.
To answer your specific questions:
1. Yes, parent training is always involved and you should
ask STE how much, when and how you can learn.
2. Prepare your house for therapists and therapy. Have an
area dedicated to ABA therapy it will definitely make the
services go more smoothly.
3. STE and other ABA providers can support your child in
preschool. Regional Center should be consulted and approve
this service. However, by the time your child is 3, the
school district will take over. Contact your preschool and
talk with STE. The targets and goals (as well as the data)
will be collected at the preschool site and the 1:1
behaviorist works with your child to contrive opportunities
to socialize, communicate and follow the program.
4. As parent, the best thing to do is to stay on top of the
program, join some autism parenting groups and read up on
ABA. Get copies of data sheets (ask STE to provide them to
you at the end of each week), start a binder and keep
records. Let STE know that you would like some training
(this is almost always part of the program) and how can you
5. Going forward:Get all of your providers to communicate
with one another. Sounds like you may even want to ask
Regional Center for more speech. If your providers have each
others reports and records, they can capitalize on what the
other is doing. Consistency and generalization across
settings is key.
I am glad so many people have had good experiences with ABA,
but I feel I most pose some cautions. I am a pediatric
physical therapist with 5 years experience, 3 in a sensory
integration clinic. I am also the parent of a beautiful
almost 3 year old with sensory processing disorder who
may/may not also be on the spectrum. I believe that any
pediatric therapeutic intervention needs to be child
directed (the child's interest, needs, wants, are the basis
of which you build & structure your therapeutic
intervention). Having said this, go with your gut, you are
your child's strongest advocate & don't be afraid to voice
concerns over something that bothers or troubles you
regarding any therapeutic intervention. We were first
referred to BIA. This resulted in 2 months of trauma for my
son. They were extremely forceful, held him in place,
ignored his sensory needs(he needs deep pressure,
proprioceptive,& vestibular input in order to organize &
focus), would consistently take away toys forcefully
(desired & non desired) even when he was interested &
learning from it. My child started having horrible tantrums,
something he never had & which disappeared after we ended
our association with BIA. The director also told me that if
I ''would only agree to their methods'' that ''they would give
me the gift of a typical child'' A statement I find offensive
as both a clinician & a parent. We were then blessed to find
Easter Seals, a hybrid of ABA that follows the Denver floor
time model of intervention & is more child directed while
implementing some of the ABA principles. Easter Seals in
combination with occupational therapy at Suma Kids & speech
therapy at Alta Bates has been a wonderful approach & our
son has gone from 37 words to 150 words & short phrases, in
addition to increased social interactions as his sensory
needs are being met. I strongly urge you to have your child
evaluated for Occupational Therapy by a sensory integration
trained therapist. I am not familiar with your service
providers for ABA, & they may be wonderful. I just felt I
could not let everyone sing ABA's praises without giving you
this cautionary note. ASD is just a label, what counts is
your child's individual impairments/delays/difficulties &
you must find the right intervention for your child. Please
do not be afraid to question,or change interventions until
you find the right fit. Best Wishes in your path to helping
your child live his best life.
STE has been working with my son since he was diagnosed a
year and a half ago. We are thrilled with them and I'm glad
to discuss with you. I don't have a copy of your original
post to address your specific questions, but feel free to
My son was recently diagnosed with autism. CHAI was immediately offered as a
therapy option by RCEB and after interviewing with them and other places we
decided to go with them. Has anyone had any experience with them? Also I am
looking for recommendations for support groups, playgroups( I live in
Oakland), and Dr's within different specialties( a developmental optometrist
to do a visual evaluation) that you have had positive experiences with. It
seems like there are a lot of people out there that are going through this( 1
in 161 children, 1 in 41 males) but despite us being pretty social we don't
know anyone personally that's going through this. I think it would be both
helpful for us and the other people involved so that we can share information
and support. I recently saw a womans post about Aspergers and the amount and
sincere compassinate response she got really made me proud to be a part of
this network. The BPN was on vacation when we got our diagnosis, and after
spending that time advocating for our son I have looked forward to reaching out
to others in our shoes. Thanks in advance and look forward to hearing from
Great website for autism resources: http://www.difflearn.com/
First of all, good for you for getting right into the stream of things to
do to help your child. Never having been a Regional Center client, I can't
speak to the services they offer. But I would like to tell you about
several other resources.
First off, when your child turns 3 you will be transitioned from RCEB to
Oakland Unified. That's good news in many ways - Oakland has some great
programs for kids on the spectrum. The main parent support group for
Oakland parents of students with special needs is the Community Advisory
Committee, or CAC for short. We meet usually on the 1st Monday of the
month. Contact CAC to be put on its email list at email@example.com
Also, there is a local special needs maillist you can join. It's a Yahoo
group based listserv called Special Needs Network. Search for it on Yahoo
and join right up.
The schools that are not inclusion schools - the ones that are specialized
schools for kids with various needs not served in a mainstream environment
- all have parent groups too. So depending on your child's school
placement, you may have a built-in support network.
I hope this helps, and I look forward to meeting up with you in one of the
other mail forums available!
My 2 year old son was disagnosed with mild autism / PDD. He
was referred to CHAI (Oakland CHildren Hospital Autism
Intervention), but we're not sure that's the best place for him.
Anyone have had experience with CHAI or BIA (used to be in
Emeryville, now in Oakland) or any other early intervention
centers in East Bay? Thank you!!
I have no experience with CHAI but my son currently gets services
from BIA and I can tell you without a doubt that it's the best
thing I've ever done for him. They are the absolute BEST. The
program is comprehensive, flexible to adapt to your particular
child's needs, but the best part is that I saw instant results in
my son as soon as we started. I wouldn't go any other way, ever.
The only problem, and they'll tell you this, themselves, is that
they're incredibly expensive. Our school district is paying for
them, through my son's IEP, and if it wasn't for that, we
wouldn't be able to be doing it. Feel free to contact me
directly if you have any questions about the specifics of our
My son was diagnosed nearly 2 years ago, just after his 2nd
birthday at Children's Hospital. I'll never forget the day. He's
doing much better now, even tho some days are still hard, but it
does get eaiser. I think the first year was the hardest. We were
''assigned'' to Si Se Puede Behavior Inc for in-home ABA 20 hrs
per wk. Our Regional Center case manager also tried to get us
hooked up with Stepping Stones, but they were full. We've been
happy with SSPBI. I have a friend who has uses BIA and likes them
very much. There is a great swim & gym program on thursday
afternoons and friday mornings at the Berkeley YMCA for special
needs kids, including those with ASD. They also have a support
group for moms. There are several great support groups meeting
in the Montclair/Walnut Creek area, as well as online support
groups which are fantastic places to get info. Many of them are
at yahoo groups. You can also get respite, child care assistance
and diaper vouchers from the Regional Center. Email me if you'd
like to join and I can pass your email on to the moderator of one
great group for the east bay.
We have done a Lovass type home program for 3 years, I am a
divorced mom with three little ones, my son is six with autism,
now after the program he is social and verbal, it took a toll on
my little girls and my finances to be able to stay home and do a
40 hour progam but I did it because alot of the public schools
had inadequate programs. But at this point I am burnt out and at
some point will need to find work and wondering how and when
most parents stop these programs?at what age do you stop? how to
transistion? does anyone know of other states like CA that have
a idea of how to work with autistic children in school? I feel
quilty for moving on but its very difficult.
I sympathize with the financial and emotional difficulties of doing
the myriad treatments for an autistic child.
Personally, I have been a play therapist for three years now in a
home-grown program called ''Son-Rise'', and it has been extremely
effective, with the child now asking me questions about myself, becoming
more interactive, etc. Not many people know about this type of program,
but here is their web- site:http://www.autismtreatmentcenter.org/
it's through the Autism Treatment Center of America.
Although I work with other therapists in a full-time program (run by the
parents), you can customize it to be an adjunct program to a regular
school, or whatever level of intensity you desire. Maybe this type of
arrangement would work for you.
I missed your original post, but I would like to recommend the home program my son went through. We used BIA, Behavioral Intervention Associates, and they worked with him for 20-30 hrs/wk for about a year. My son then entered a regular kindergarten class with the support of an aide.
Does anybody have any personal experience with chelation as a
treatment for autism? I'd love to hear all about it. Does it
work? Is it just quackery? Are there any local pediatricians we
can work with who have some expertise in the area? Feel free to
contact me directly.
You've probably already seen this, or 10 other people will post it. But a child recently died during chelation therapy. Read about it here:
As of the date of the article, I don't think the child's cause of death had been officially determined, but if you're considering chelation therapy, it might be worth following up on this story.
Please research this and inform yourself. A child recently died who was
undergoing chelation therapy. There are no reseacrh studies that prove or
disprove the effectiveness of chelation for autism. The organization that
endorses chelation is not recognized by the scientific community. Do a
A good deal of information about chelation generally can be found at
and specific to autism at
Granted, the man who tends this website does have a point of view -- and
he pretty much thinks chelation is quackery, but at least he puts
together information from reputable sources, and gives additional leads.
Might at least be worth a look.
Questions about whether child might be autistic
Our pediatrician believes our 9-month-old boy may have autism, as do
we (actually, I'm pretty convinced he does). He has made no
connections since birth, doesn't seem to recognize me as mom, prefers
to look at things to people, few expressions, also several months
behind in development. (I have older boy so I can see the difference.)
I just read The Autism Book by Dr. Bob Sears. Awesome resource. I
want to find a doctor who is expert in the biomedical approach from
the Berkeley, Oakland, El Cerrito, Albany area. Does anyone know of
someone with MAPS or DANS training? Oak Children's Hosp tells me I
have a 4-6 month wait to see a developmental pediatrician. Also
fearing long waits from Regional Center, which is so far
unresponsive. Am thinking of going the private route to attempt to get
diagnosis so we can proceed. I understand early intervention is
crucial. Any other advice for getting the ball rolling quickly is
helpful. What are other's experiences with wait times at Regional
Center? Are they using the biomedical approach there? Would love to
connect with any parents who've tried the biomedical approach to talk
While I think nine months is early for an autism diagnosis, I totally understand your
desire to be proactive with early intervention. My autistic son is now 15 years old and I
have spent a huge amount of time, energy and money navigating the waters that you are
asking about. There's a lot to learn, but I would say that the crucial first step is to
get your diagnosis. You need to see Dr. Ann Parker (900 Colusa Ave Suite 202, Berkeley,
(510) 528-5580) ASAP! The worlds of behavioral therapy, biomedical approaches, support
services and holistic autism treatment are extremely confusing. Dr. Parker has been a
kind, supportive and incredibly knowledgable ''voice of sanity'' for our family. She's the
best. Best of luck to you. Please feel free to email me with any questions. Whatever your
ultimate diagnosis, I know your son will take you and your family on an amazing journey.
If your 9 month old is not responding to faces visually, I recommend a comprehensive
vision examination to rule out a vision problem such as a high refractive error (blurry
vision) or eye health issue. Eye care providers (optometrists and ophthalmologists) who
routinely test infants and young children should be able to rule out vision problems as
the cause of your infant's visual inattention.
Deborah Orel-Bixler, O.D., Ph.D.
We had a speech evaluation at Herrick (Alta Bates) that cost $700 out of pocket because of
our deductible. I wish we had gone straight to the Regional Center, which didn't charge at
all for the evaluation. We did have to wait just about exactly 45 days from the time we
sent the Regional Center a letter to the time we heard from them, it felt like a black
hole of unanswered messages. I think it helped to have our pediatrician also contacting
them and sending information. It's a long month-and-a-half when you're worried about your
kid. I was quoted over $1,200 for a private evaluation by a local developmental
pediatrician, and she didn't take insurance for the evaluation portion. I'm glad we waited
to get the eval at Regional Center - they were really wonderful there, I was very happy
with the evaluator. My son, it turns out, is at age level in almost everything - from the
time red flags were raised (18-months) until we actually got the evaluation (21-months),
he caught up. We did qualify for some service but that has been slow to get started (it's
been over a month). I think once it gets going it will work fine. If money is no object,
then go for the private evaluation and get the ball rolling. Otherwise be prepared to wait
a bit to hear from the Regional Center (do get your ped to contact them, though), and try
to educate yourself in the meantime through books and online resources. Good luck!
You're correct that early intervention is a great boon for children with autism and
autism spectrum conditions. I would urge you to call the special education
office of the school district in which you live.
In CA special education, funds for developmental services are administered
thru the Special Education Local Plan Area, or SELPA.
Oakland, having a big special-ed population, is a ''single district SELPA''.
But smaller districts, like Berkeley, El Cerrito, Alameda, combine forces.
Figure out which is the responsible office for the district in which you live.
School districts call special-ed departments ''Programs for Exceptional
Children'' or PEC.
Even tho' your little one is only nine months old, it will be your local SELPA
that can connect you to ''Mommy and Me'' programs for pre-K children
with autism and other disabilities. Under the Individuals with Disabilities
Education Act (IDEA) it is illegal to put kids with disabilities on waiting
lists for appropriate placement. This generally applies to school-age
kids. But you can bring pressure to bear earlier to get services
Your local school district will also have a Community Advisory Committee
for Special Education, which is like a PTA for special ed parents and
teachers, and is mandated by state law. it is great to connect with
other special ed parents.
Regional Center services do not generally kick in until the responsibility of the
school ends, usually at high school graduation or age 22, whichever comes
first. But it is important to have your child identified for Regional Center
services before they turn 14. Earlier is better. A letter from the Regional
Center was what it took to get our son six years of free college tuition,
income from SSI, Medi-Cal eligibility, and many other program opportunities.
It does take time to get set up with the Regional Center, but you can
approach the local SELPA immediately. And if they balk, the local CAC
can help you apply leverage.
There is a Nolo Press book on the Individual Education Plan (IEP) that
describes how to handle worst-case battles with school districts.
I went in expecting trouble, and found that the school district was
wonderful to our family every step of the way thru high school
Amelia, former Oakland CAC co-chair
I just wanted to say that the responder who said that Regional Center services don't kick
in until early adulthood is incorrect. Early Intervention Services in California are
provided through Regional Centers, and services through a SELPA/school district do not
begin until age three. (to clarify, special Education services are provided through
SELPA's/school districts, but special education eligibility begins at age three. What
you want is Early Intervention, which covers birth - three.) So, if you want services to
start as quickly as possible you should have your child evaluated by Regional Center now.
They can provide Speech, OT and PT as well as an Infant Development Specialist (or pay
for a social program) until your child turns age three. At three, the school district
will begin to cover therapy services, but your child can continue to be a Regional Center
client if they meet certain criteria, and RC will cover things like respite and medical
supplies at that point. So, I guess I am just urging you to call Regional Center right
away and not waste time contacting the school district at this point. Once your child is
a Regional Center client and receiving services, they will help him transition into the
school district at age three automatically. Also, check out the PIP Program (Parent
Infant Program) through Children's Hospital Oakland. This program is amazing and is for
babies through age three.
mother to a daughter with special needs who has navigated these waters before!
9 months old is not too young to be accepted into an early intervention program. My
own child was accepted at that age and our good friend's child was accepted at 3
months old. Each individual's experience will differ, but what do you have to lose by
trying? Call Regional Center and go from there!
a Berkeley mom
I am newly pregnant with my second child. My first child was
diagnosed with autism at age 2. While he is doing amazing after
receiving incredible early intervention, I am quite nervous about baby
#2. After getting the diagnosis for my son, and doing a great deal of
research, I changed the way my family eats, I now buy almost all
natural and organic products, etc. But I'm wondering if there is
anything else I can do (take certain supplements, eat or don't eat
certain foods, etc.). If anyone has been through this, I'd love to
hear your advice.
It's so great that you're able to articulate your worries and
concerns. It brought tears to my eyes to read your post. I was
in the same situation as you 7 years ago. You may get some
medical advice or people trying to reassure you, but I just
wanted to send you a virtual hug and honor and validate your
fears. It's scary. Keep reaching out to people who can be
supportive and ignore those who dismiss your feelings. For me,
I felt so relieved to see my daughter after pushing her out.
She ended up being NT but when I was pregnant with her I was
also in an intense phase of trying to figure out WHY my had
autism, so I beat myself up for every little thing. I hope you
have an amazing birth.
It's good that you caught your son's autism early and gave
him early intervention. My son has asperger's, we too caught
it early and gave him early intervention. Now at 19 he is at
a 4 yr college, living on campus, and loving it. Continue
with the intervention for your son, it makes all the difference!
When my son was 15 mos, I was pregnant with my daughter. We
ate healthily (I didn't take supplements), limited the use
of the microwave and all electronics, and did a lot of
outdoors activities including long nature walks (almost daily).
When my daughter was born she was perfect in every way. The
most wonderful baby and a pure joy! Now at 16 yrs with a few
minor exceptions every now and then, I still feel the same
My advise to you is to not worry. Continue to eat healthily,
get regular check-ups, limit electronics, and most of all
enjoy your son!
There are theories that have not been thoroughly
researched that suggest that taking probiotics will help
your chances of not having another ASD kid. I don't know if
it will work but it can't hurt. The theory is that the
flora in the mom's digestive system is linked with autism.
Hope its helpful
I would go toxic and chemical free as much as possible. I know the theories
aren't clear but environmental factors have to have something to do with
the rise in autism, not just reporting increases. Check out Goodguide.com
and find healthier products for you and your baby. All the best.
The use of anti-depressants in pregnancy has been linked to
an increased risk of having an autistic child.
If you don't already you can take DHA supplements on top of
your pre-natal vitamins. Vitamin D might also lower the risk
A close relative's 4 yo son is delayed in his language
skill, does not want to read and has a hard time learning
numbers. He seems to play well in a 2 kids group but
beyond that, he does not seem to interact with them well
and retreats to play by himself like hiding under sheets,
tables or plays with his airplanes. Recently family
members and some of whom are in the medical profession
told the mom that her son may be in the autistic spectrum
and to seek help. The mom told the pediatrician about her
concerns but the ped just said her son is just quirky,
like the Dad, without even seeing him nor a more detailed
examination. To family members, the Dad is a case of
undiagnosed autistic with many obsessive behaviors and
socially challenged. He is recently unemployed and
probably will never find employment again. What is
especially difficul to tell whether the son is truly
languaged challenged or not is the family is trilingual
with French being the dominant language. The most
disburting symptom is the son has an extremely high
tolerance for physical pain. He would crash his body on
objects while playing and never even says owie. He
doesn't seem to learn from the painful situation and will
repeat it. Family thinks may be something is not wired
properly for pain signal to reach his brain. Finally
after much efforts, the ped agreed to refer the mom to a
long list of specialists and Stanford being one of the
institution. But the waiting time is at least 6 months.
The next referral was for a Developmental Pediatrician who
does not accept insurance and an initial consultation is
at least $400 per hour. Family is in San Jose area and
can use words of wisdom from families that have traveled
this journey...where to seek the right help without severe
financial strain. Family was in denial and now starting
to seek help. Much appreciated.
She can request that a Psychologist at the School District
give him an assessment for services, if he is autistic he
would qualify for a free pre-school or special day class,
and most likely speech therapy depending on the level of his
delays. It sounds like he may have at least a sensory
Processing Disorder and be sensory seeking, my daughter
loves to crash into everything and needs this extra input to
help regulate her behavior and moods. Here in Oakland there
is an agency called Family Resource network located at
Bananas that would be able to give her advice, I do not know
what agency is in San Jose but every county has one, she
could call the one here in Oakland and ask for a referral to
her local agency.
Suggest to this mother that she call her local school
district and request a full evaluation. This would not end
in a medical diagnosis, but would help her to get
appropriate educational services if he is eligible. Good
I'm so sorry to hear your friends son's dr. didn't respond
right away (and even earlier in annual check ups) to his
symptoms. The federal gov has an early intervention
program for 0-3 yrs old that is covered 100% by the
government to diagnosis and treat kids in this age range.
The Regional Center of the East Bay (www.rceb.org)tests
children (I think of all ages). If he were under 3 they
could have rec'd free services. I recommend contacting
them to see if they can help direct them to resources in
their area as well as maybe government covered resources.
Another resource is the public school system, particularily
if he isn't speaking well yet. They should be able to test
many areas for free even if he's not enrolled yet. They
can also provide at least speech services now and maybe
some other early intervention services. Contact the local
school district office and write a letter w/a formal
request. I think they have to respond within 30 days. I
suggest they look up the proper language to request such
services on the web and put in the school's reponse
requirements in the letter to get the school district
moving on it. They tend to move a bit faster if the
request is in writing and the parents site the deadlines,
what they are entitled to etc. Another option is to
contact www.cwtherapy.com in Oakland. They have testing
and services, but do cost a bit. They may be able to
provide resources in the southbay too. The sooner he gets
treatment, the better. Early intervention helps out both
the parents in finding useful parenting tools, as well as
helps the child improve or overcome some obstacles.
Has your relative contacted the special education folks at
the boy's school district? One aspect of special education
law is ''child find'--the obligation to locate and serve
students with disabilities residing within the area.
Since early intervention is key in autism spectrum
disorders, and since IDEA covers pre-school children as
well, many districts have services. My district has a
Diagnostic Team, including school psychologists and speech
therapist, who evaluate children suspected of having special
Might be something to look into. There's also the Regional
Center. I'm not familiar with services in your area, but a
little Googling would probably nail down where these folks
are located and whether they can help.
I am planning to try for a baby, but have to admit that a
fear in the back of my mind is the probability of having a
child with autism. While I know there isn't concrete
evidence of genetic links, it seems that researchers are
leaning that way. My husband's family (all on the father's
side) includes a sister with an autistic 7-year old, a
cousin with a highly autistic 11-year old, another cousin
with a 7-year old with Down's, and a 17 year-old nephew with
ADD (same cousin). In other words, in a family with 8
cousins/peers on the father's side of the family, three of
them have children with developmental disorders. While I
know these kids have their own joys, I am obviously anxious
at the prospect and hardship/challenges it brings. I am 36
years old and already nervous about the increased chance of
complications. My questions are: 1) is there hard evidence
of this tie?, 2) any advice on how to approach this
fear/risk?, 3) how can I discuss this with family without
offending them?, and 4) are there early/pre-natal indicators
of autism in the womb? Thank you.
Feeling guilty but scared
You cannot discuss this with family members who already
are raising a child with special needs without offending
them. You need to get yourself to a Genetic Counselor who
can give you correct answers to your questions.
Hi! I am not giving you advice, but am going to give you
some statistics about my family tree.
My son has Aspergers/ADHD
My brother has a degree of Aspergers
My 3 male cousins have - ADHD, ASpergers and Dyslexia
And I know that the older generation of men - my uncle and
my mom's male cousins - all have something going on.
I have been coping with a special needs child for a while
now, and it takes a LOT out of you.
Make your decisions with care. Wish you the best.
Call your provider and ask about genetic testing? Use a donor to conceive? I'd
think there'd be many solutions in this area so start with getting sound medical
advice. Consider your options or if you really want kids. Adoption??
mom to many
Any time you get pregnant it's always going to be a genetic
roll of the dice. Having developmental disorders in the
family may increase your probabilities of having a child
with a developmental disorder, but there's always a chance
something might go wrong, even if you don't. My oldest son
has autism and my younger son had something like a 33%
chance (?) of having it, too. We rolled the dice, anyway and
he is so far neurotypical. There have been studies but as
far as I know there is no hard evidence, and there are no
pre-natal indicators as autism is diagnosed by observation
of behavior and not by any hard and fast test. I'm not sure
how you can discuss this with your family without offending
them; honestly, I'm a little offended and I don't even know
you. The good news is that since you have the family history
you'll have help in recognizing the signs early, if there
is, in fact, something to recognize, and you'll be able to
get help early, because the earlier the diagnosis and
treatment, the better the long term prognosis. Good luck.
I just visited my sister's family. She has a 3 yo girl. I have
repeatedly felt something was off with ''Nell's'' development. I
feel she may have some form of Autism or Sensory Process Disorder.
She has many non-typical behaviors for her age. I base this on
development of my own child, contact w/ friends' kids, and kids'
behavior at my girl's daycare. 'Nell': tiptoe walks, does
'echolalia', speaks in a bizarre lilt, squeals randomly, is
obsessed w/ hair, rarely makes eye contact, will play with
strands of others' hair, saying ''Hayurr!'' repeatedly, gets
emotionally overwhelmed easily, etc.
However, she enjoys contact, giggles, is sweet and gentle, loves
books, collecting things outside...So she isn't fully enveloped
by a miserable state of being. Here's the rub. My sis and her
hub. are completely oblivious to any of these things as
indicators that something may be wrong.
I am shocked their pediatrician hasn't noticed. I am sad sis and
her fam. do not have social contact w/ anyone with similar-age
kids. They live in the country and haven't sought socializing
opportunities for Nell. They may start her in a preschool this
Aug. I feel that may help them observe a cross-section of her age
group. Maybe they'd see Nell isn't ''like'' most other kids.
I do not have a great emotional bond with sis. She's not
'California' and I am, to put it briefly. I have tried to have
deep talks with her in the past. They mostly end w/her crisply
thanking me for advice then blowing it off, or w/ her getting
angry or mocking me for whatever I am sharing with her. She
resents me for my ''having an easier go of life'' than her. She is
very intelligent and has a devastating ability to cut me down and
cut me off if I displease her. I fear her and I love her.
Nell has a peanut allergy which causes dark under-eye shiners.
She has eczema. I worry that her behavior, sunken eyes and
eczema will target her for scorn by her peers. My sis as a kid
was bullied due to her own odd, shy, intelligent ways. My heart
breaks as I see her daughter sewn deep in a cocoon of behavior
and impulse and allergy. I feel sad that sis and her hub may
never see these things. I am at a loss. Am I over-reacting and
out of line, or if not - should I share what I feel about Nell? I
love that little skinny scrap of a niece. I don't want her to
hurt. But I don't want to lose my sis by dumping on them my
possibly unfounded fears. Advice?
scared little sissy
You sound like a kind sister who's trying to help! I work with
kids on the autism spectrum, and it is a wide spectrum with no
one looking the same. (Girls also present a little differently
than boys--usually with better developed social relatedness and
more socially appropriate interests.) It sure sounds like your
niece is on the spectrum, possibly has high functioning autism.
Even pediatricians in urban areas miss the diagnosis, so it's
important to be proactive. Also, since the earlier the
intervention, the better, I would recommend mentioning it to your
sister (or asking someone else to mention it) so your niece can
get early intervention (from the school district after age three
years). Then you'll have done everything you can do, and then you
can let it go.
Allergies are common in kids on the spectrum, and some treatments
take that into consideration. Some diet modifications can help
some kids (gluten, dairy, etc.)
I hope your sister can hear it and get help for her daughter.
This is more important than offending your sister; you need to tell her your concerns
and get your niece the help she needs. Research shows that early intervention is a
child with autism's best chance for making progress developmentally. Months and
years are precious at this age, and there is no time to waste in getting a diagnosis
services to support her development.
Best of luck to you in your conversation with her. I hope it goes better than you
A local Occupational Therapist
You are over-reacting, and you are out of line. This child does
NOT sound autistic. And what is ''California,'' anyway?
First of all, I wish that people would not be so quick to diagnose a child with a few
even several quirks with autism. It takes a specialist to do that and even they don't
always agree. There are several other things it could be. I do appreciate your
for your niece and I don't think it is entirely unfounded. Unfortunately it doesn't
like her parents are going to be open to hearing it from you.
You are in a very difficult position because if she does have developmental or speech
problems early intervention is critical, but that is not going to be possible unless
parents are on board. Is there someone who they would be more receptive to? Another
family member or a friend? If you know who the child's pediatrician is you could
your concerns with her and have her keep an eye out for the behaviors you describe.
they do start her in preschool, perhaps a preschool teacher could be of help. If you
tell your sister you think her child has autism, I can pretty much guarantee you will
met with anger and defensiveness and nothing productive will be achieved.
Mom of a special needs kid
I'm the mother of an autistic son who is a preteen. Yes,
autistic children stand out. Perhaps her going to school is a
GOOD THING because they can have her tested and then provide her
and her parents with services she is entitled to. Having an
autistic child is a blessing as it shows you so many different
perspectives in being a parent...just try to stop
comparing...autistic children can be extremely talented in some
areas...try to figure out what they are and be willing to learn
something new from an ''expert.'' Be hopeful and perhaps your sis
will be open to the world of autism...parents go through denial
before the love for the child opens up the acceptance to a new
and different world...good luck! Think positive.
You are a caring Aunt and I think you feel your concerns need
validation with acceptance but they do not. It seems to me that
your sister may feel your contempt, and though you may
genuinely be concerned, unless you modulate your feelings about
your sister and your niece's health she will not listen. I did
not care for the way you refered to your niece. I only hope
you are more compassionate in person. I also hope that even if
she is a child with Autism you will support her growth with
positivity and love. I do not know what ''Californian'' means
being a die hard New Yorker transplanted to N. California years
ago, but if you have a I'm more (fill in the blank) than you
attitude forget it.
Stop comparing. Stop talking. Your sister heard you and sees
other children. If her child has food allergies she is dealing
with a lot. Yes, there is a link between food allergies and
Autism. Talk with your sister about maybe how stressful her
daughter's allergies may be for her. Get into her world with no
judgement and listen. If she trusts you and feels supported she
may be open to listening to you.
My son has a speech delay. I sensed it before anyone did-even
my doctor. What I strongly resent and will protect him from is
the way relatives and friends globalize the delay as if that is
all he is about. I have seen how relatives will act differently
around him. We all are different. Some of us are differently
abled. What you can do is button your lips and gather resources
to give your sister if the need arises.
wishing your niece the best!
I feel for you. I think that because of your difficult
relationship with your sister, you should just let them find out
on their own. Seems to me maybe already they know that their
daughter is ''different'', if they haven't already made play dates
with other kids. Could they be afraid? 3 is really old to not
have had some social contact with other kids. As you said your
niece will start preschool soon and someone is bound to say
something to them then. I know you want to intervene but it's
their life. Just hope your niece will find a wonderful accepting
My 39 month old boy does seem to be an odd one. Ever since he
started speaking he has had immediate and delayed echolalia,
reversed his pronouns for a while, does seem to not interact too
much with other kids (but is not scared of being in school). To
me the most noticeable issue is that he never seems to talk to
any other kid. He will happily follow a kid around but nothing is
said. He hit all his motor milestones within the age range and
does not show too many typical signs of autism. He maintains eye
contact, is not a picky eater, no spinning objects, no
self-destructive behavior etc. He does repeat entire books to
himself - but when I ask him what he is talking about, he is
always able to tell me.
He is very verbal but his usage seems to be developing somewhat
differently...he repeats random phrases from time to time and
does not seem to know why he has said a particular thing. He does
have one seemingly rare speech peculiarity...he re-emphasizes the
last sound in certain words...eg milk when he says it sounds like
milk-lk-lk-k-k-. Neither his pediatrician or speech evaluator
know what this is.
Sometimes I think he is not able to comprehend what is being
said, even though I know he is trying. The other day I said, 'do
you want to go now' and he echoed it back to me as 'do you want
to bring a cow?' Could he have some auditory processing issues
whose symptoms mimic autism?
He has passed a recent hearing test and I have gotten him
evaluated twice. The second evaluator reluctantly gave him a
pdd-nos diagnosis but told me that he might just 'grow out of
it.' He does seem to have some sensory issues - big stores and
malls cause massive tantrums, he is not really into imaginary
play in a big way (though he does run around in a spiderman
costume), describes every single thing he or anyone else is doing
and goes into a trance from time to time.
On the other hand, he is a smart little guy. He makes some cool
connections, and is very affectionate with people he knows well.
He is an intense kid who seems to be improving but is not really
''on track.'' I want to get help sooner rather than later as I hear
early intervention has the best results. But I am not sure what
the problem really is. Others have noticed some peculiar speech
stuff too - a friend thought he had a monotone going but even
this does not seem to be consistent.
Any insights and advise is GREATLY appreciated.
Hmmmm. That's a toughie. The problem is that there's so much
about autism that we don't know. Without an actual test to rule
it out, we're left to just guess based on observation, so
naturally you're going to hear something different from each
person you talk to. Something I've learned in my journey with
autism is that there's a very fine line between ''autistic,''
''ADD/ADHD'' and ''Sensory processing disorder.'' I know that it's no
coincidence that these issues affect boys at a rate of 4:1 to
girls, I just don't know why (and unfortunately neither does
I can tell you with certainty, however, that my son, whose
diagnosis of pdd-nos at 33 months was not given reluctantly,
always had excellent eye contact, never spun, never was self
injurious and from the day he started speaking, he repeated what
he heard. We were also told that he might grow out of it, but
instead he grew ''into'' it and his diagnosis was changed to
autistic disorder just past the age of 4.
It's possible that you might never get an answer to your
question, in which case you'll need to be able to answer, for
yourself, how important it is that you find out. I know that your
goal is to get help for your son, and as soon as possible, in
which case I would advise you that with a diagnosis of pdd-nos
already in hand, you should head to your local school district
(since he's older than 3) and start some OT and speech, possibly
a home program, in addition to school. There's nothing wrong with
too much intensive intervention; worst case scenario you'll find
out he never really needed it. Actually, the *real* worst case
scenario (IMO) is to find out later that he did really need it
but you didn't do it. While it's never too late to start
services, it's true that the earlier you do it, the better he'll
be in the long run.
Feel free to contact me directly if you want.
All of what you wrote sounds fairly normal. The confusion of what is
said if this was happening all the time I would be concerned. I know
of several kids who thought that I said something else. Sometimes it
is how one is processing the information or thinking about something.
Sometimes others including ourselves we do not annunciate clearly,
especially if one talks fast or does not move their tongue, lips and
teeth enough to place the sounds correctly in the mouth. (By the way,
on the west coast we tend to talk faster than our friends in the
south.) Here is what I really think... some kids do not know how to
interact with another child. (This I have seen several times.)
Imagine having to interact with an animal or people from another
culture if you do not spend a lot of time with them --how do you act
and what do you do? (Do you ever notice a child watch a group of
people- even other kids- with complete fascination or fear?) As an
adult you may have to show your child how to play, and how to interact
with others. Interacting with others is not as intuitive as it may
seem. There are social things that some children really do not know
anything about. It may seem frustrating if this is something that you
take for granted and just think your child should know. Everyone is
different and everyone has some learning that has to do with learning
beyond reading, writing and arithmetic. Just show him how to interact
and describe what you are doing.
Nanny in the know
Your son sounds very much like my daughter at that age- she was
a precocious talker but had odd prosidy, echolalia, memorized
and used a lot of stock phrases from books and movies,
sometimes out of context, and did not interact with other kids
though she was affectionate at home and didn't exhibit the
classic signs of autism either. We did a lot of research and
got a reserved diagnosis of asperger syndrome. She displayed
maybe 10 of a list of 40 common traits of asperger's. She got
some speech therapy to help with pragmatic language but the
most useful classes we got for her were social skills groups
with a private therapist. Now she's 14 and doing great. She
doesn't identify herself as having Asperger's and she fits in
well at school and has friends, and she doesn't get pulled out
for any special classes. She is happy and so am I. Remember
that autism is a very wide spectrum. Maybe your son, like my
daughter, has just some of the characteristics of the high end
of the spectrum. I'd read more about Aspergers and see if the
description sounds like a match. Good luck!
Your son sounds very much like my 4 year old - down to the the milk-k-k
thing! He was diagnosed with ''autistic-like'' behaviors by OUSD last
year, thus qualifying for autism services through the district. The
psychologist told us he has Hyperlexia but that's not an actual
I used to ask myself the question ''Autism or not?'' just like
you. The ''A'' word is scary at first and no one wants that label for
his or her child. However, in some ways, I've come to believe that
whether it is or isn't autism doesn't matter. It sounds like your son,
like mine, has echolalia, challenges with social language and social
skills, difficulty with auditory processing and mild sensory issues.
Whatever you call it, these are real issues and real challenges and
you are right to trust your instincts and seek out support.
Getting access to early intervention and teaching techniques that can
help your son develop the skills that don't come naturally to him is
what's important now. A diagnosis is about your eligibility for those
services and therapies, not a judgment about who your son is or will
We've had a wonderful experience with OUSD's early intervention
program. My son goes to a language-enriched preschool program and has
made remarkable progress in the past year. If you're not in Oakland,
your district may have something comparable. The East Bay Regional
Center is also a good resource.
Please feel free to contact me via email if you'd like more
information. I also write about raising a not-so-typical child at
Your son sounds like an awesome kid and the label won't change that!
It sounds like Asperger's, which is a mild form of autism. The
language problems are much more subtle than frank autism and
are very similar to what you describe. Your description of
your son sounds nearly identical to how my son was at that
age. We took him to many doctors, and finally, at age six, a
neuropsychologist said Asperger's. If you have a PDD/NOS
diagnosis, use it to get Speech/language therapy. You probably
want to look into an early intensive therapy program such as
ABA, RDI, floor time. Feel free to e-mail me offline. Don't
do nothing, it is so much better to intervene rather than wait
and see. Also, contact your school district, but be weary of
what they tell you, as they don't want ot pay for the expensive
Your son sounds a lot like my son, who also has a PDD-NOS dx, but does
not fit i the stereotypical autistic mold. You are right that you
absolutely do not want to wait for him to ''grow out of it.'' At this
age, children are developing so rapidly and the gap between him and
his peers may just continue to grow wider.
Write a letter to your school district asking for a comprehensive
psychological and pragmatic speech evaluation and if possible walk it
into the office yourself and have them date stamp it. I am not sure
what school district you are in, but try looking up the office of
Programs for Exceptional Children or Special Education and address it
to the director of that department. There is a process where they have
to respond within 15 days, you sign a consent, and then they have 60
days to do an evaluation not including breaks, so it may not all get
done before summer at this point. Once they evaluate him, if he
qualifies he can be placed in a public preschool immediately that will
address his needs. You can include a written report from the doctor
that gave the PDD-NOS dx in his school evaluation. Also, if you
haven't already, you can get an evaluation from the Regional Center to
see if he qualifies for any services there. If you want to get him
into some kind of intervention while you are waiting for all of this,
there are preschool aged playgroups at Word Works in Oakland that
focus on social skills and language or call the Angel Network in San
Francisco to find an integrated playgroup. Also, have him evaluated by
an occupational therapist for his sensory issues. You might want to
read the book ''The Out of Sync Child.''
Hi - I read your post and I really felt for you and could relate
to your confusion. Your son sounds very similar to my own son
who is just turning three this month. We started the process of
getting him evaluated about 9 months ago after his preschool
teachers and others, started commenting on his odd behavior. Our
little guy has the same difficulty with language you describe -
the reversal of pronouns, the delayed and immediate echolia, the
tendency to memorize entire phrases or sentences. He doesn't
technically have a speech ''delay'' but we started him in speech
therapy two times/week and he is definitely benefitting from it.
Have you considered this? our insurance covers a portion. My son
has trouble talking to kids, is better one on one with adults.
Also you said you had him evaluated and he rec'd a pdd-nos dx.
Was this from a developmental pediatrician? If so, did they
recommend a treatment program for him? It might be helpful to
tell you what we did in my son's case. We had him evaluated by
two different developmental pediatricians (if you need names, I
can help) and he also rec'd a pdd-nos dx from one and a
aspergers dx from the other. My son has more sensory issues than
it sounds like your son does- for example, he is always jumping
in place, highly active, aversive of other things, ie. certain
textures/foods. After the evals, we started him with early
intervention services thru the State (regional center of the
east bay), including an aide at his preschool to help him
socialize with other kids, speech, occupational therapy and an
afternoon program of ABA which is also helping with his language
development and play skills. If your son is already three, then
you have transitioned out of early intervention services thru
regional center, and need to discuss the situation w/ the school
district. One idea is to have a private speech evaluation done,
and then call your school district and request an IEP, send them
your private speech report, recommending services, and then have
the SD offer your son speech therapy and whatever else.. We
figured that our son might ''grow out of it'' but that a little
extra help wouldn't hurt things... Even with the extra help for
our son, and he is making good progress, it is still apparent
that he is developing differently than other kids. if you want
to talk more you can call me 847-6877
I wonder if it's Tourette's Syndrome? It's a form of compusive obsessive
People can be fully functional with some odd things regarding speech and
patterns (really PATTERNS). I would take your son to another Dr. maybe a
psychologist? Sounds interesting actually, wow, he can remember whole
You should ask the school district for an auditory processing
evaluation. Auditory processing problems happen when the hearing
itself is fine but the sound gets processed in a garbled way by
the brain. Your son sounds a lot like my daughter in many ways.
My daughter did that thing where she emphasized wierd parts of
words also and her speech therapist didn't know why either. The
hearing you say one thing when you said another is classic for
someone with auditory processing problems. My daughter used to
repeat what people said to her so it seemed like echolalia but
really she was repeating it to help herself process it. As your
son gets older you can have very specific tests that break down
the component parts of auditory processing. You put earphones on
and then they test you for specific skills. You can have a very
strong auditory memory but then mishear things frequently or not
hear the parts of words distinctly or not hear against
background noise. I wish I could tell you that we got a firm
diagnosis for my daughter but we never did. We've been back and
forth about the autism thing also and usually end up on no,
she's not. I would focus on what your sons specific needs and
strengths are to help him develop. You can move forward with
treatment by addressing his needs (social skills help, phonemic
awareness when he gets older) without an overall diagnosis.
I can't tell you if your child may be on the autism spectrum or
not, but I CAN tell you that both my sons (now 6 and 9) have the
same odd stutter at the ends of words, and have had it since
they were small. Neither is on the autism spectrum , but both
have some motor issues and learning differences. This has
NOTHING to do with intelligence, (both are very bright do very
well in school,) only with the ability to perform certain kinds
of tasks. Some of your son's behaviours remind me of my older
boy's at that age.
I would say you have valid concerns and might consider having
your child evaluated. If you can get referred by your
pediatrician your health insurance might cover at least part of
it. The advantage of testing now is that if your son needs help
in school or out if it, he can get it early, and at the very
least you will be aware of areas he might need help with later.
I would love to hear if anyone else has insight into this
particular odd stutter. If the stutter is causing him problems,
you can get free speech therapy through your school district.
It helped my younger son a lot, and made it easier to get him
access to other services once he was in school, since he already
had an IEP for speech.
Don't worry, but do follow up on this.
Your description sounds a lot like my son who did not have a
definitive diagnosis until recently. (He is 8.) He has
auditory processing problems and problems with interpretting
social interactions. You might consider doing research on ASD,
autism spectrum disorders.
If you would like to talk about it directly, email me.
(Also, I run a free program for families with special needs
children (ages 2-4) at the YMCA. You might find our support
My 34 month old son sounds extremely similar to your son -- the
echolalia, reversed pronouns, wants to be around kids, but does
not talk to them, emphasizes the last sound of a word
(yessssss), has tantrums at crowded places, etc. The only
difference from your post is that my son IS a picky eater.
Since he was under 3, we had him evaluated through the Regional
Center and he received the diagnosis of PDD-NOS provisional
(which means that he may or may not ''grow out of it'').
Through the Regional Center, we have recently received the
following services: speech therapy, occupational therapy, in-
home behavioral/ABA therapy. We are also giving him some
supplements like fish oil, etc. And I have to say for the past
four months, we have seen some tremendous improvements. He
still has a long way to go to catch up with his peers, and he
still has the echolalia and other speech issues. One thing we
are going to start doing with our behavioral therapists is have
some supervised/guided play dates, so that the therapist will
help my son interact with the other child.
So, I'm not sure if I'm answering your question or not, but
from my non-professional opinion, it does sound like your son
may fit somewhere on the autism spectrum - at ''high
functioning'' level, and that he may benefit greatly from
therapy. I'm not sure if you've already done so, but I think
the first step is to contact your school district to see what
services they will provide since he is over 3.
I think my almost 3 year old son has autism. We have a Dr.
appointment tomorrow, but my day care provider has noticed the
same things I have. It seems like he's on the milder end of the
spectrum, but all the web searches I have done have very
depressing prognoses. Can any of you tell me what autism is like
when a child is school age or older? My son started speaking
when he was 1 but stopped making progress when he turned 2. He
can't start or keep up a conversation, and instead repeats exact
phrases he has heard from his favorite tv shows. Although he
makes great eye contact with me, his teachers at daycare say he
sometimes avoids eye contact and prefers to play by himself. He
loves to be cuddled, unlike severe autistics, and expresses
affection to me and his dad. He points and wants to share what
he sees but has a hard time expressing himself. He doesn't have
any motor deficits, but sometimes flaps his hands when he is very
excited. Not often, though. Does it get worse after 3? How much
worse? Was your child like this at 3, and if you started
treatment, how much improvement did you see? I am very
distraught about this and would really like to hear positive
stories of how your autistic child is doing.
I would be careful not to jump to conclusions from what you
described. Autism is getting to be the ''in'' diagnosis for all
sorts of other disabilities in speech and language and
socialization. My child got that label for similar behavior
and it wasn't until a friend suggested we have her hearing
checked that we found out she had a moderate hearing loss.
That caused her delayed speech and consequently poor
socialization. You should get a thorough diagnosis first.
Your pediatrician can refer your child to a neurologist, a
speech and language pathologist, and a developmental
pediatrician or behaviorist. When treated early, all
disabilities including autism have good prognosis. It is not
the label, but it is how the disabilities are treated that is
the most important. Try and not worry. Progress does happen
with the right suppost services.
Been there too!
I am SO so sorry. By now you will have had your doctor's
appointment and might probably have some more information, and
I'm sure you're totally overwhelmed by all the information and
options and everything. Right now you need to find some support
for yourself as well as for your son.
Your son sounds a lot like mine did at that age, except mine
didn't point and want to share, so that's actually pretty good
news for you. Pointing is the #1 diagnostic indicator of autism,
so the fact that he does point is really good. For us, things got
really bad around 3.25 and stayed bad for about a year. But then
things got better, and now he's almost 6 and in a regular ed
You'll hear a lot from a lot of different sources about miracle
diets and miracle therapies and miracle supplements, but keep in
mind that not every treatment is going to work for every kid, and
you have to do what's best for your child, as only you know.
However, intensive treatment as soon as possible, no matter what
kind you choose, will give your son the best chances. It's a lot
of hard work for both of you, and you'll have a lot of different
fights on your hands and it's not going to be easy, but hard work
now will pay off later. My son never spoke except to recite
things he'd heard on the TV or the computer, and now he asks
meaningful questions and can have a conversation with a peer.
I'm sorry you're sad, I was in your shoes 3 years ago and I was
very sad, too. Please feel free to contact me directly if you
want to talk more.
My daughter was very similar to this. She did the hand flapping,
she would repeat phrases from TV shows out of context, and she
had a delayed speech development. She had extreme problems with
anything out of her routine, and any loud or mechanical noises
(blenders, vacuum cleaners, lawn mowers) would send her into a
state of total panic. At one point, the sight of a vacuum
cleaner sent her into panic.
I guess that I went into denial about the possibility of autism,
and focused on something called ''sensory integration dysfunction''
I took her to the pediatrician who didn't want to label her.
So, we recognized there was something - we didn't want to call it
autism (which I think is now being overdiagnosed, just as ADD was
a few years ago) but we did know that there was something.
Among the things we did - we focused on routine, and talked to
her a lot if the routine was going to be broken. We enrolled her
in gymnastics and music courses. The music course was a HUGE
At the age of 4, a new teacher at her preschool asked if she was
an early talker, because she talked sooo much and soooo well.
We talked her through loud noises and convinced her that if she
understood what they were, she didn't need to be afraid of them.
(she now says about the blender ''I am not afraid of it, but it
We worked with her a lot on eye contact.
Today she is 7 - she is in first grade, reading at a 3rd grade
level. She is also in an Aikido class and taking piano lessons
She is also making good friends at school, at brownies, and in
the neighborhood. Quite the change from the little girl who
never wanted to be with anyone.
There are still oddities about her - but overall she is great.
Here is the moral of the story. Take a deep breath - you know
your child better than anyone else. Do research, read, talk to
other parents, and recognize that your child is unique. Work
with your child to overcome some of the issues, but understand
that the issues are real. Don't let anyone put your kid into a
box. Listen to what the professionals say, but trust your own
My son had similar symptoms at 3 years old as well. His
diagnosis is unclear (professionals ranged in their
assessment), ranging from Asbergers to non-verbal learning
disabilities. Regardless of the diagnosis, the behavior therapy
is the same and often effective. Initially this was very
difficult for me, but my interaction with the professionals
skilled in the area of child development give me great home.
There is a lot we can do for these kids. My advice is to get
him/her assessed by a child development specialist and get all
the information you can. We see Dr. Brad Burman occasionally, a
speech therapist, and an occupational therapist. Once you get
beyond the ''what'' to ''what can we do'', you'll feel a lot better!
My DD does not have autism but has other developemental issues
so she attends playgroups and soon preschool with kids of
various special needs including autism. I have gotten to know
many kids ''on the spectrum'' and their moms. I have to say
each child i know who has autism is just as different, unique
and individual as any other child I know. For any of our
children it is so hard to predict what the future will be as
each child has their own unique talents and personalities. It
is hard to get a diagnosis for your child at whatever age and
their is a grieving process that goes along with it for sure.
But i can't tell you how helpful and empowering it can be to
build a team/community for your child. Meeting and becoming
friends with other families in the special needs world has been
a great gift to us. We also have found a wonderful group of
therapists who support our daughter and us during celebrations
and rough patches. It is scary at first to be sure, but there
are people out there to help you, your son and your family.
Sending you positive thoughts and knowing that it does get
Proud mom of child with special needs
It's important to know that many children with autism make alot
of developmental progress with the right enough help. And most
doctors won't tell you this, but some children with autism
recover completely from it. Many of the current new cases of
autism have to do with the interface between genetics
(predispositions) and environmental insults (vaccines, pollution,
repeated antibiotics, etc.) Websites to go to are:
Autism.com (the Autism Research Insitiute, based in San Diego)
autismtreatmentcenter.org (parent training to work with your child)
These are not your usual resources; most doctors won't given them
to you. The fact that your child was doing better and then began
to show these signs of autism points to the interaction I
mentioned above; ARI (the first website above) and
Holistichealth.com could be significant resources for you.
I'm a parent of a wonderful autistic guy, and I don't know what
we would have done without these; they've helped us alot.
You must be worried sick, but PLEASE don't go down that road
until you have an official diagnosis, and if possible, a second
opinon. A friend of mine had her daycare provider tell her they
suspected Asperger's and had her running in circles -- turned
out not even to be the case. There can be many complicated
factors and look-alike symptoms. You mentioned you are going to
see a doctor very soon. Once you get some concrete facts, take
it from there. In the meantime, try not to stress!
My 6 year-old son has language delays & ADHD....the school
district has done some recent assessments & they say he is
right on the border for autism. I have always insisted that he
is not autistic because he relates well to his family & can
read expressions very well.
But, I have a question. Can someone be autistic & be able to
read people's expressions quite well but still not understand
other signs of social interactions? I was watching my son in
the playground the other day & he just didn't relate like the
other kids. He talks too close, doesn't want anyone else to
get too close, gets mad when someone else wants to do the same
thing he is doing (other kids usually like it when another kid
We see a behavioral pediatrician & he says my son is not
autistic...I guess I'm trying to figure out if there
is ''social'' type training for autistic kids that would benefit
Thanks for any answers!
If it hasn't been done already, consider getting a specialized
OT evaluation for sensory processing issues (aka sensory
integration disorder). ''The Out of Sync Child'' is an excellent
reference you might want to check out as well to see if you
think there's a fit. Sometimes kids with sensory issues
can ''look'' autistic in their social behaviors when they're with
people they aren't comfortable with, but are fine with close
family. And many autistic kids have sensory issues too.
My kid's ''sort of austistic'' too
The autism spectrum is very broad so your son might be on the edge.
that he has PDD-NOS (Pervasive Developmental Disorder-not otherwise
Despite the scary title, this can be a very mild condition. The son of
a friend of
mine has this and he's learned to make friends and has done very well in
People with mild forms are quite able to sense emotions in others and
own. My son, who has Asperger's Syndrome and had severe symptoms at age
was still able to form a close bond with me and express affection. I
recommend that you have your son evaluated and see if he does fall into
these mild categories. There are lots of positive interventions, so
even if your son
does have a mild diagnosis, I'm sure he'll do quite well. Good luck.
Sigh. This is a hard one. My child also has social issues, but
nothing diagnosable. Realize that the school district has to
provide an IEP if a child has a diagnosis. Then the school
district has to provide services to that IEP's specification.
(I'm not an expert in this; my son doesn't have one, so sorry if
I got anything wrong.) This is great, to a certain extent,
because you don' thave to pay for what the school district
In answer to your question, YES. There are plenty of programs
like the one you mention. I do not know what they are in your
area (I'm in the south bay) but one of the programs down here is
called Friendsmart in Mountain View. The classes are called
''social skills'' classes.
Here are some links from the Bay School's website about autism
(The Bay school is a school for autistic children in Santa Cruz):
If your child is ''borderline'' some of the resources will apply.
Here is a page from my website about autism resources. Check out
the Handle institute - they come highly recommended.
I would recomment this yahoogroup ''parents of special needs
kids.'' It's located on the peninsula, but has excellent resources
- for all kids with any special need.
And finally, here are some links from berkeley parents network:
strawberry canyon social skills camp:
BTW, I once read about a wonderful program -- a theatre program -
used for asperger's syndrome children, where they were taught how
to respond ''emotionally'' in situations. It worked well. Turns
out that some of our children process social interaction in a
more cerebral fashion -- they don't just pick things up by
osmosis. And no, that doesn't make them diagnosable. Protect
him, get him some classes and help him practice and ... Good luck!
I'm not an expert, but I do understand that the spectrum for autism is
he's very close to the edge but still on the spectrum?
Autism is a spectrum disorder, which means there's a very wide
range between ''autistic'' and ''not autistic.'' Oftentimes the line
between ''autistic'' and ''typical'' is really REALLY hard to see.
However, in my experience, and in answer to your question, yes,
one can be autistic and still be able to read expressions well.
One can also be autistic and also relate well. One can also be
autistic and make good eye contact, be affectionate with loved
ones, make friends and still ''seem'' perfectly typical.
On the other hand, one can be typically developing and also have
trouble with social interaction; to not relate like the other
kids. The question is, does your son need the ''label'' of autism
in order to do well and thrive?
There are lots of groups that work on social interaction, with
autistic and non autistic kids. IMO, any kid would benefit from a
social skills group, so regardless of your diagnosis, it wouldn't
hurt to just find one and sign up. I'm sure you'll get responses
from folks who run groups, I'd encourage you to contact them!
Feel free to contact me directly, as well.
Look in to Asperger's Syndrome. It was the answer for my son.
Your son sounds like a unique and worthy individual and I wish you the
best in helping him to find his way in the world. A few years ago, I
worked with a pretty high-functioning autistic boy in a play group. I
the facilitator and we had some other children involved and we just had
a couple of hours a week to practice playing. The goal was to help the
boy develop better social skills and to encourage him to build his
imaginative play skills. I must say that it was often really fun, even
me, and I bet your son would benefit from something like this. There is
Bay Area therapist who specializes in this imaginative play therapy, but
don't live in the area anymore and I can't remember her name. Sorry! I
believe she taught/worked at San Francisco State. I went to a workshop
she taught in the area once. Good luck tracking her down and finding
resources for your son.
Sometimes even typically developing kids need to be taught
social/language skills in an organized, step-by-step fashion.
Your child may benefit from social skills or pragmatic language
groups. Also, he may have sensory-motor and/or motor planning
delays which would affect his sense of space and proximity, as
you described his interactions in the park. You might want to
consider having him evaluated by an OT, if you have not done so
already. Good luck!
Autism is a very broad spectrum including Aspergers and can
present itself very differently in individuals. I obviously can't
diagnose if he has it or not, but a good local resource for play
and social skills is Pam Wolfberg at San Francisco State in the
special education department. Her focus is Integrated Play Groups
and Autism. Website for Integrated Play Groups
Another site which focuses on Aspergers and has resources listed
for teaching social skills is
There are other causes for difficulties with social interaction.
You mentioned that your child has language delay and ADHD--have
they ruled out Fragile X Syndrome? Also, has his hearing been
thoroughly checked? He may have trouble understanding what other
kids are saying if his hearing is muffled at all (infections,
fluid build up) So he might avoid playing with other kids or
learn ''bad habits'' in terms of personal space for speaking.
Best of luck.
My 5-year-old also has what has been labeled ''autistic-like
characteristics'', yet does not meet the clinical definition of
autism. Nor does he meet the definition of Asperger's, or
anything else for that matter. He loves people, and relates well
to his family (he is very sensitive to me and my moods), but has
difficulty with social skills.
He is currently enrolled in a weekly class on social skills and
social language use through Communication Works, in Berkeley. I
think it has been very helpful for him - I would definitely
recommend you check it out. You can get more information on
their website at www.cwtherapy.com.
Autism is a ''spectrum'' disorder - there's a huge range of
behaviors that fall somewhere on the general spectrum. It sounds
like your son, while not fully autistic, is somewhere in that
range. Dorine Slocum, of Vida Behavioral Solutions in
Oakland, works with kids like this - kids who have any of a range
of social-skills problems. I know she's worked with autistic kids
before, but she also works with kids who just don't get the
nonverbal cues (how close to stand, how loudly to speak, etc.)
that make social interactions work. You can contact her by phone
at 510-835-1272, or online at www.vidabehavioralsolutions.com if
you prefer. Hope this helps!
Hi, ASD has a wide range of behavioral patterns on the spectrum.
It sounds as though he may lean a little more towards Aspergers
syndrome. You can have him evaluated for this if you think it is
necessary. Regardless, yes children can sometimes read
expressions and lack the ability to socially interact. The
training you seek is out there. Does he have any sensory
integration issues that you are aware of? How you interpret the
sensory perceptions you have, directly relates to how you
interact with those around you. Depending on the severity of the
problem, you may want to consult a DAN protocol doctor or see
what services are offered by your school district. The latter
usually requires a diagnoses though.
sounds like he might have aspergers. there are a few books out
there. ones by tony attwood are good. behavavioral training
is the only ''cure.''
Boy, do I feel your pain! My daughter has various ADHD type and
learning disability problems depending on who you talk to and
which day you see her! We had a long 4 visit evaluation with
multiple raters and videotaped standardized diagnostic tests at
Children's Hospital and they said she was NOT on the autistic
spectrum--nowhere close. (Autism should only be diagnosed using
multiple raters and standardized tests--not by eyeballing the
kid.) Another Kaiser psychologist said she had PDD after 2
visits, another Kaiser developmental pediatrician said she was
not on the autistic spectrum after 1 visit. For various
reasons I continually wonder whether my daughter is 'kind of
autistic' even though she is extremely imaginative and very
outgoing (but often inappropriate) socially. I've done a lot of
worrying, thinking and reading about the issue. In my opinion,
this type of confusion will continue until we find a 'hard'
biological marker or markers for what is now probably just a
loose grouping of many similar seeming developmental issues.
Since there are no 'hard' markers for autism some pracitioners
use a very loose definition of autism that is increasingly
including a lot of kids who are just a little off socially. In
the early '90s the DSM categories widened what can be
considered 'autism' and at school there are bureaucratic
pressures increasing the likelihood of getting an autism
diagnosis--schools can not give an ADHD diagnosis but they can
classify someone as ASD. This whole mess leads to a lot of
confusion, and to a lot more 'autism' diagnosis which is very
much in vogue right now. I think it is important to be skeptical
and remember the whole autistic spectrum is a social
construction based on subjective ratings of behavior. Anyway,
to answer your question, yes, your son can benefit from social
skills training. Lots of kids need help with social skills.
Google Michelle Winner. Her program and books are for kids with
all sorts of social cognitive issues.
We are struggling with how to deal with our 4.5 year old son's
challenging behavior. Some background: He has been evaluated by
Childrens' Hospital as well as the Regional Center of the East
Bay. One group of evaluators said he did NOT have autism, the
other diagnosed him as being on the Autistic Spectrum. They
both agreed he had a challenging temperment and significant
speech and language delays. He is currently in a special ed
preschool through the school district, where he is getting
speech therapy and occupational therapy.
I feel great about his preschool program and the help he is
getting there. However, it has become clear to us that we
really need help in dealing with his aggressive, disruptive,
unpredictable and contrary behavior outside of the classroom. I
feel like we need to be seeing either a child therapist
specializing in spectrum disorders and the behavioral issues
that accompany them; or possibly a behaviorist to work with us
on a regular basis. I'm just not sure what kind of a
professional would best suit our family and our needs.
Are there others out there who have had success in working with
someone on their child's challenging behavior issues? Any
approaches you've found useful, or professionals who have
helped you would be greatly appreciated.
sad & frustrated mom
I can give you some suggestions, online and offline.
You didn't specify the type of challenging behaviors, so this may not be
completely relevant. It helped my son at about the same age when
tantrums and aggressive actions were the problem. The first thing that
helped was something called ''floor time''
therapy; we saw Jane Rubin, PhD, 510 704 8759 in Berkeley on Milvia for
about 3 or 4 months, and the tantrums largely disappeared immediately.
It was like magic - they really just STOPPED.
The second thing I would recommend is a behavioral assessment.
There are several good organizations out there. BCRC, www.bcrc.com, is
one I've worked with through my son's school.
Carl Schrader is the head of the organization. They contract with the
school district for aides to help in the classroom, but I think they
will also come to the house and help assess what's going on. They can
then help you with general strategies to help (like creating a ''what
are we doing today'' board to help show the day's schedule visually,
which can help organize you son's day for him - which often helps calm
these guys down.)
Depending on your school district, you may get some help from them with
this too. If your son needs behavioral help in the classroom to ''keep
it together'' while in school, the district will arrange a behavioral
assessment. You can ask them to include a home assessment component.
Focus on the fact that if you are not consistently applying the same
principles at home, the school program will not work as well. (It's
true!) This will help sell them on paying for it.
Speech/language therapy is a huge help. Some of the reason for his
behavior is probably reaction to a very mysterious and inconsistent
world. If he doesn't understand what is being asked of him, and then
people get cross with him for not complying, it's completely
understandable that he would get mad. The faster you can help him with
both comprehension and expression, the better. Visual aids like a
planning board can really help with daily stuff. I probably have a Word
doc of the last one we used, so let me know if you want me to dig it up.
Last thing I would suggest is a book or two. I found some of the ideas
in The Explosive Child by Ross W Greene helpful. Actually it was mostly
helpful to read about other kids who were as bad as or worse than my
own... as I had already implemented a lot of the strategies he had
talked about. But I only read it last year.
I hope this gives you a couple of places to try. I'd be happy to talk or
email offline too. My son's now 9, and while he does still have
explosive outbursts, they are far rarer than when he was 4. Also we know
the triggers far better now.
Send a letter to your school district, requesting a ''Functional
Behavioral Assessment.'' Since he qualifies for special education and
has an IEP, the district is responsible for his education, which means
how he acts in the community (outside of a structured school setting)
and at home. A psychologist from the school will assess and then there
will be a meeting to create a behavior plan. I *think* this could also
be handled with a new IEP -- legally, you can call a new IEP whenever
there's a need to change the child's program.
Here's a link to a sample letter:
If the district says no, then send a similar letter to Regional Center,
and tell your case worker that you are willing to go to Exceptions and
Appeal if necessary.
Both the school district and RCEB have behavioralists. You could
definitely ask RCEB to send someone like the Lovaas Institute, which is
a RCEB vendor locally.
At some point, it would be helpful to have a diagnosis by a trained,
experienced neuropsychologist. If the testing was just 2 hours done in a
tiny room, that's not much help. Elsewhere on the website there are some
recommendations for neuropsychs.
We had good success working on some behavioral issues with Behavior
Analysts in Pleasant Hill. One advantage of a behaviorist is that they
can observe your child and see the behaviors that occur in challenging
settings and then draw up a consistent behavior plan that all the
specialists can use. Good luck.
I'm just beginning to read about the autism and dairy
intolerance link and feel a little panicked about my 11-month
old, who definitely has a dairy intolerance. Does anyone have
any ideas as to the percentage of kids who have dairy
intolerance, versus those who go on to have the onset of
autistic-like symptoms around 1 year and a half? While my son
is very social and outgoing, he does exhibit behavioral quirks
that worry me (selective listening, lots of babbling but
resistant to gestures/signing, doesn't wave hello, goodbye). Am
I just being paranoid or do I need to put him on a strict
gluten dairy-free diet and (maybe even) have him tested?
Sounds to me like you're being too concerned. My son didn't
like signing either, and he didn't really do a lot of talking
until after 2.... Just remember that kids ahve a lot of
different performance levels.
Breathe easy. We moms will find just about anything to worry
about, but I think you can let this one go. Being intolerant to
dairy is NOT a red flag for autism. Before you start to self-
diagnose (which is always a bad idea in my opinion)please talk
about your concerns with your child's pediatrician. That's what
they are there for.
I can't help you on the science, but it sounds like your kid is
pretty normal. Your description pretty much described my now
21-month old daughter at 11th months. She had icky major dairy
issues (vomited up even the slightest bit of cow or soy milk
mixed into a food such as pancake batter); she pointed, but
didn't wave; ignored any attempts to teach signing; only used
two words (mama and dada), but not necessarily correctly; etc.
The dairy issues disappeared with her first birthday (almost to
the day) and the only bizarre symptoms that she is showing now
sadly are typically associated with rising two-year olds. Her
verbal skills are about right, maybe a little behind, but she
and I communicate easily. She is ******ly well adjusted (far
better than she was at 11 months when she was suffering from a
bad case of the 'Mommies').
I realize that autism is more of an issue for boys than girls.
I am not discouraging you from getting it checked out if it
helps you sleep better at night. but, it sound like your kid
My son was diagnosed with autism at age 2.2 years. I knew
something was up with him at about 1.5 years (didn't understand
language, in his own world, not interested in other kids) but
waited since everyone said I was worrying too much, etc... At
the two year visit with the pedi, he referred us to the Regional
Center of the East Bay for assessment. It took 2.5 months after
that to get the visit with the doctor -- 2.5 wasted months. We
have him on a GFCF diet now and it's really not that bad once
you get your head around it and find good places to shop. I've
put my older ''quirky'' son on it too. I would strongly urge you
not to wait but go get an assessment thru the Regional Center
right away. I had to call them about 3 times before they called
back. Then they sent a big packet I had to fill out describing
my son's behavior etc... Then they set up an appointment at
Children's Hospital. Even tho I was devastated to get the
diagnosis, at least it gives us great services thru the Early
Intervention program in California. Just be glad you live here!
Autism is such an uncharted subject that's really finally
coming to light. My youngest brother, who's 12 now, was
diagnosed with Autism when he was 3 years old. If my
parents had known more about they're options and had
better medical advice then i'm sure the steps they could
have taken might have been more preventative or even just
They did choose to take a very homeopathic approach,
though, which has been the most beneficial. Around the
time he was diagnosed,there wasn't much information
except what was being passed off as conspiracy theories,
etc. So, they changed his diet, chose only organic
supplements, cut all dairy and any processed glucose and
sucrose products from everyone's diet and although you
can't make the autism go away, you can improve his lifestyle
by being focused, supportive and very aware. In fact, if this is
a path you choose to take, it's recommended that everyone
try to stick to the plan. There are more and more books and
information being published so, you are luckier than they
were. But, really, if you are concerned, take him to see a
specialist. Because early intervention is you're best weapon
against the odds. Good luck!!
My sister and brother-in-law have a daughter who just turned a
year old. She has been described by a nuerologist as globally
developmentally delayed (50%), probably having a communicative
disorder or disability, possibly on the autistic spectrum and
not probably, but possibly having rhetts. She is very very
cheerful and smiley, but is just starting to sit up, does not
crawl or walk, does not babble, mimic sounds, track or make eye
contact or respond to her name or other sounds. More testing is
being done, but they won't have a specific diagnosis for at
least a month (that would mostly be if it is something testable
like rhetts) or much much longer. There's more, but I wanted to
paint just enough of a picture to ask those who have been in a
similar situation, or know someone who has, what are good ways
to support my sister and brother-in-law? what are things we
should definitely not say? what are things that might be helpful
to say or do? I've been doing a bunch of reading (as are they)
and I know everyone is different, but I thought it might help to
hear from people some specific ideas of how to be supportive.
seeking to be a supportive sister-in-law
Please be kind and sweet,,its hard especially when other parents
point out what the child can not do.
Regional center of oakland is a great place for them to contact.
They have lots of people that can come to the house or your
family can take them to the center for help.
Just be their and be supportive and no negative remarks.
Hope this helps
I just wanted to comment on some of the characteristics you
describe - a friend's baby had very similar symptoms and was
finally diagnosed with Angelman's Syndrome. As that is very
serious, I hope that's not the case for your sister's baby, but
I thought I'd mention it since it's a rare and apparently often
overlooked diagnosis. In terms of how to be supportive, I've
found with my friend that just talking openly about how his baby
is doing, what they're going through in terms of tests, etc.,
and how he feels about it all, as well as allowing him to talk
about something ELSE works best. He relayed a story about a
friend of his with a son with developmental problems that were
hard to diagnose, and that the worst part for that person was
that the only thing people ever talked to him about was his
son. He felt like everything else he used to have in common
with his friends just disappeared, though he realized they were
all just trying to be sensitive. Anyway, hope this helps.
First off, just wanted to say how very kind I think you are to be
asking for constructive advice on supporting your brother
and sister-in-law in this situation. One of our daughters has
autism, and those friends and family members who've
worked to educate themselves about the disorder have
made a profound contribution to our household's sanity and
general quality of life.
It sounds as though they may be dealing with Rett
Syndrome, but if your niece's diagnosis is, ultimately, that
she has an autistic spectrum disorder, I would highly
recommend reading the book LET ME HEAR YOUR VOICE
by Catherine Maurice. While her children's ''recovery'' is
extremely rare, she gives an excellent overview of
appropriate therapies and the history of the disorder.
I wrote an essay several years ago about things our family
had found most helpful, titled ''Being There: What You Can
do For Parents When Tragedy Strikes.'' I'm sure it's not a
universal solution, but I just wanted to put together some
ideas, some things I wish I'd known earlier when I struggled
to comfort pals who'd gotten hit with scary and sad
You can access the piece at the following URL, if you think it
might be useful, and you don't have to register or anything to
The most important essay I've read over the years, however,
has been Emily Perl Kingsley's ''Welcome To Holland.''
She's an outstanding writer, and (I think) manages to be
both profound and comforting in this short piece, without
ever venturing into bad Hallmark-card world. The ''official''
version is available here:
Again, I commend you on your approach to all of this, and I
hope things turn out well for you and your family.
First of all, you're already doing one of my suggestions and
that is educating yourselves as much as possible so that you
understand what your niece's limitations/challenges are and
won't expect too much of her as a result of knowing. You will
also be able to empathize with your sister's situation and that
is always helpful. My sister did try to educate herself but I
didn't get too much support from my parents because they weren't
forward thinking enough to say that my son had a disability.
They just wanted to think it was me not parenting him the right
way. It has gotten a little better but I still wish they would
educate themselves more, that's my biggest wish. Otherwise,
trying to give her a break would be another suggestion. Your
niece needs to be able to get a break from her parents too so if
she had that comfort level with you, that is so helpful. And
it's a comfort for the parents when it's someone that
understands that the child is not a typical child. One more
suggestion, if it's feasible, is to try to go to
appointments/therapy sessions with her if you can. Sometimes
the doctor will just need to talk to her or give his feedback
and helping with the baby would be helpful and to just be a
support for your sister. I hope this was helpful to you.
Mom of autistic son
Questions about resources and support
My 2.5-year-old nephew has been diagnosed with autism. He is barely speaking, is
developmentally delayed (late hitting most milestones), rates low on adaptive skills,
and has some stereotypical behavior (hand flapping), but he seems happy and is very
affectionate with his parents (shy with others). He is just starting ABA services
through BIA and speech therapy through Easter Seals. We are also beginning the IEP
process (parents live in Oakland, but might be willing to move if another district
offers better services). I'm looking for advice on parent advocates/lawyers (and how
important it is to hire and consult with one), service providers, preschools, support
groups for the parents, informative/reliable/helpful resources (books, websites),
activities to do with my nephew to help him develop, and how to be a good aunt in this
situation. I know that's a lot, but if you have experience with a similar child I'd
appreciate any advice you could give in any or all of these areas. Thanks.
Our service coordinator from GGRC highly recommended we go to JumpStart
(http://www.autismjumpstart.org) -- they are in San Francisco. Maybe you guys have
something similar in the east bay or maybe you guys could go to JumpStart. It's a
one-week, intensive training program for parents/adults of autistic children. The
therapists there are incredibly nice and knowledgeable. I personally found the
course very empowering. It taught me better and proper ways to better communicate
with my 2yo ASD child -- both verbally and non-verbally. The course is very
intensive. I was overwhelmed at first but it's really worth it.
Hi there.. The hardest part is in the beginning (when BIA comes into the home,
coordinating therapy ) your sibling is off to a great start! I worked for BIA for
years and they are amazing. You'll see a lot of progress. I've worked
independently for 10 plus years in the field. I'd be happy to answer any questions
or advice on IEPs, advocacy etc.
Please have your nephew's parents contact Sandy Westlie (director) at Peter Pan
Preschool in El Cerrito (not to be confused with Peter Pan in Oakland!)
She will be a valuable resource. My child is not on the spectrum so I cannot speak
to your nephew's situation directly, but other parents at the school have
expressed that Teacher Sandy was the best thing that ever happened to their family
when they were struggling to address the needs of their autistic-spectrum child.
(It doesn't matter that your nephew is in a different county. At the very least,
Teacher Sandy will be able to give you great information about resources.)
Peter Pan's number is (510) 234-5918. Best to call between 3-4pm on a school day.
School will be out until the beginning of Sept. (Feel free to ask moderator for my
email if you want more contact info.)
I've previously recommended on BPN the book Parenting Your Child with Autism which
was written by a good friend and colleague of mine who also happens to be the
parent of one child diagnosed with autism and one diagnosed with Aspergers. The
book starts with the premise that there is no ''prescription'' for how to handle
your child's needs, and as such they help explore ideas and resources so that you
can evolve your own strategy for what is going to work for your family. The book
is evidence-based (with references) but it's not too jargony and it's an extremely
readable work. You can find the book on Amazon:
My son was diagnosed with high-functioning Autism a few
months ago on his 3rd birthday. I really want and need to
get plugged into Autism resources, communities and groups.
I could probably post a question a week on BPN, but
recognize there is probably a better forum for all of my
Autism-specific questions. So please share, point me in the
right direction... online boards, communities, blogs, books,
groups conferences. Also, is there anything local/east bay
I should know about?
As background to help guide recommendations, we anticipated
the diagnosis and have been doing intensive ABA and speech
early intervention for the last year (through RCEB). We're
ready to move forward, eyes open and want to have all of the
resources possible at our disposal as we do so. I see that
my son has a beautiful and unique mind and I want to
celebrate and foster it, while addressing challenges that
might get in the way of his learning or making friends.
He's really high functioning, and since he's only three,
it's hard to know what that really means.
I really appreciate and look forward to your recommendations.
-Mom of a High-functioning Autistic Boy
I too have a 6 year old son with autism and I live in the
east bay. Have you heard of the CARE parent network?
http://www.contracostaarc.com/html/care.html They have
monthly support group meetings and tons of resources. Also
the Autism Family Support Project at We Care in Concord
have support groups and autism family friendly events.
Also there is the UC Davis MIND Institute
http://www.ucdmc.ucdavis.edu/mindinstitute/ and if you go
to their web site there are plenty of new autism studies
you can participate in. We are currently participating in
the Curemark study, a study on a new enzyme used to treat
autism. Have you tried a DAN doctor yet?
http://www.autism.com So many things to list here better
to email me! Sounds like you are on the right path though.
When my son was first diagnosed I spent a whole lotta time
at http://www.autism-pdd.net/forum/default.asp. I could
probably list about 8 million different blogs for you, but
I'll save the space and ask you to email me if you're
interested; I've also recently found a thriving autism
community on Twitter. You didn't mention your school
district, but if you're at BUSD there's BSPED:
http://www.berkeley.net/index.php?page=bsped. I hope this is
helpful, there's a ton of stuff out there, if you need
somebody to help guide your way, feel free to contact me
directly. I've been there!
There was a really great TED talk about research at Harvard
on the autism spectrum. Half of kids in the study actually
had brain seizures (as shown by EEG) and came to full
functioning with medication. Here's the link:
Not that this changes the need for other resources, just
thought her perspective as a neurobiologist was useful.
I'm forwarding here a reply for my request for resources
from another ''autism mom''. Reply to me directly and I'll
connect you to Anne if you so desire. Good luck, Richard
''Well, both the autism e-mail lists I am on are based in
Washington, so a lot of the announcements & so forth would
not be helpful to her. I'm thinking that a local support
group might be more appropriate for her. Fortunately, they
are springing up all over the place. (Well, it's not
really fortunate, because it means that more & more people
are being affected by autism!)
If she goes to www.tacanow.org (Talk About Curing Autism
Now), they have a list of local groups. And they have some
information on their site.
The Autism Research Institute has a site at www.autism.com.
And there is also www.generationrescue.org , which can set
a person up with a ''Rescue Angel'' in her area -- an autism
parent who has been in the trenches a while, & can offer
advice & support. (This is the group that Jenny McCarthy
has thrown her support behind.)
Do warn this woman that people in the autism community are
VERY opinionated, & everybody thinks that what worked best
for HIS kid is what EVERYBODY should do. The fact is that
autism is VERY complicated, & there are a lot of nuances &
variables. Tell her not to let anybody push her around.
My brother has an autistic son diagnosed around 3 years old
when he suddenly stopped speaking. He and his wife turned to
the UCLA Medical Center for help and seemed quite satisfied
there. This was over the past 20 years so things may have
changed but it is worth a look I think.
One great resource is http://www.aspergersresource.org/.
This website is all-inclusive and provides Bay Area resources.
Hope this helps!
I'm sure you'll get a lot of responses, but let me add mine to the mix.
My son was diagnosed with HFA around his third birthday as well. He's seven
now and doing great in a mainstream 1st grade class. Early intervention really
is key, in my experience, as is a positive outlook of acceptance and a love for
your child's gifts and strengths. Sounds like you've got both of those!
Check out The Thinking Person's Guide to Autism, website and community
with national reach, run by a bunch of local Bay Area folks. They have essays
and articles every day by parents, practitioners and people who themselves
are on the autism spectrum. It's a wonderful source of positive support and
The book ''Quirky, Yes. Hopeless, No'' has tons of advice and ideas for working
with everyday challenges.
Finally, I write about our family's experience at
http://hyperlexicon.blogspot.com/ and would be glad to answer any
additional questions that come up for you via email. You're not alone!
1) The Family Resource Network, in the Bananas building on
Claremont Ave. near the DMV - http://www.frnoakland.org/
2) Einstein's Clubhouse, info about homeschooling Asperger
kids in Berkeley, online at http://EinsteinsClubhouse.org
We are finally in a place where we sort of know what we're
dealing with and starting to understand what we can do to
help manage some of my son's issues, but I feel completely
traumatized by the last 5 years of meltdowns, being stared
at, the daily struggles, etc. etc. I'm hoping there are some
books, like other parents' stories that can help me start a
little bit of my own emotional recovery and get some better
perspective. I'm hoping to start with a cheaper alternative
to therapy for now. Any recommendations? anon
Please read this compelling blog:
East Bay writer/BPN mom Christa Dahlstrom does a great job
of describing the fears, challenges, and fun of parenting a
6-year-old on the spectrum over the last three years or so.
I'd recommend you check out some of the excellent blogs she
links to, and/or contact Christa via on her her 'comments'
section. Best of luck to you & your child.
I don't know how old your child is or what area of the
spectrum you are dealing with, but I went through much the
same with my son, who has mild Aspergers. When he was 2,3,
and 4 and even older I couldn't take him into any store or
restaurant without him having a tantrum and shrieking, and
not hearing a word I said to him. Naturally everyone was
staring at me like I didn't know how to control my kid. Now
he is 10 and 90% of the time he is pure joy. The rest we are
dealing with and he is aware of his issues and working on
it. It gets so much better. That is my message for you.
He/she is probably very intelligent so if you nurture that
side of him/her you are on the right track. Read aloud and
take him/her to the library a lot. And hugs, hug him/her
when he/she is getting over his/her tantrum. Don't listen to
the 'experts' who tell you to ignore him/her. Hug him/her.
They crave that. I wish you lots of patience and love.
I am very worried about my sister who is having a hard time
coping with her autistic 5 year old son. I am looking for
advice and recommendations for resources in Santa Cruz or San
Jose. I think there are many issues going on, including my
sister's depression and isolation which makes it hard for her
to get good help (she is married and has a supportive husband,
but it is clearly not enough). She is pretty pessimistic about
his chances for sucess in public school and feels her only hope
is to home school him. Another issue is what can I and our
other family members do to help her and her son? She has
trouble asking and when I make suggestions I often feel as if I
am judging her for not doing things right. I want to support
her but I also think she needs to deal with her depression so
that she can be a better advocate for her son. She has had
horrible experiences with doctors and meds, so I don't know how
likely she would be to seek help from a psychiatist. I feel as
if my post leaves very little for people to suggest, but I am
hopeful. Thanks for you help.
First, I want to say that it's so GREAT of you to want to reach out to
your sister and help her. Having a child with autism is extremely
difficult and she needs your support, it's wonderful that you care so
much about her and her son. I don't think your post left little for me
to suggest, but without knowing you or your sister or her son, I can
only tell you what has worked and not worked for me with my various
extended family members.
My first thought is that she probably does feel judged by your well
meaning suggestions. I'm not saying that you ARE judging her, but
there's a good chance that she already feels judged by the rest of the
world, and therefore does from you, too. This is hard stuff, in addition
to being depressed, she might be blaming herself, she might be resentful
of your children (if you have
them) who are developing typically. She might feel isolated or lonely or
guilty or angry or just so many other things.
Therefore, I would recommend not making any suggestions. Instead, ask
her what she needs from you. Something like ''I love you and I want to
help. What can I do?'' And say it a lot, particularly if she has trouble
asking for help, she could say ''nothing'' at first, but after the 10th
time of asking she might tell you something. Make sure she knows that
you're there to support her and not to tell her what she's doing wrong
(not that you are!
That's just how she might see it.)
Secondly, I would learn all that you can about autism. Not so that you
can teach her anything, but just so that you can be armed with
knowledge. And tell her you want to learn. Ask her what her most
important resources are, what websites or books you can read. Make sure
she knows that you want to make an effort so that you can help her.
And, she needs support, but not from you; from other parents who have
been there. And the beauty of the internet is that it doesn't matter
where you live, you can find people anywhere in the world. I have a
large network of friends with autistic children, and very rarely do I
ever see or talk to them in person. They live all over the world, and
yet we ''speak'' every day. Some possible resources:
http://php.com/ - Parents Helping Parents. Located in the South Bay
somewhere, it's the best chance of finding real life people to connect
http://autism-pdd.net/ - Lots of good info, including a very active
I have more, but none that I'm comfortable posting to the world.
Feel free to contact me directly if you want more info or just want to
talk some more. Good luck!!
There should be a regional center in her area that can offer some sort
I think you and I must be in parallel universes. My sister has very
similar problems (for similar reasons) with her almost five year old
autistic son. I recommend that your sister contact SPIN (Special
Parents Information Network) located in Santa Cruz County. Contact them
at www.spinsc.org or (831)722- 2800. She can also contact San Andreas
Regional Center to see about qualifying for their services. She can
also call the Santa Cruz County Office of Education for help through the
school district. Good luck, I understand your desire to help and the
frustration and sadness that go along with watching a loved one struggle
with obtaining help for their child.
Feeling helpless too
I am looking for a private special school for my brother who is a bit
autistic and has epilepsy. He will be here with his tourist visa while
staying at my place in Rockridge during this summer 06. He is 25 years
old and speaks only Korean but very familiar with English language. He
is a dedicated Christian, who is warm at heart and very innocent,
like a boy. In Korea where he lives, there are almost no opportunities
support for people with mental disabilities. I am an only family he's
and luckily I was born here in the states that I wanted to extend some
help for him here in the states. I understand that he won't be able to
into state-run programs such by east bay regional office, because he
isn't ''american'. So my challenge is to find private organization or
institution. However, I am having a hard time with getting such
information. I would really appreciate any advice or information if
You could try contacting ILRC (Independent Living Resource
Center). website: http://www.ilrcsf.org
649 Mission Street, 3rd Floor, San Francisco, CA 94105-4128
(415) 543-6222 – Fax (415) 543-6318 - TTY 543-6698
There is also the Family Resource Network at 5232 Claremont
Avenue. Oakland, CA 94618. Tel: 510/547-7322 website:
I found the staff at FRN to be really helpful. You can make an
appointment or drop in and talk to someone about your situation
and they will link you up with different services or provide
you with information about different programs.
It might help too if you are clear about what you want for your
brother, i.e. to learn English, to socialize, to have some fun
things to do during the day, to get physical or occupational
therapy, do art projects, work on academic skills, etc..
Good luck and best wishes.
Parenting an autistic child
I am currently pregnant with my second child. Around the
time I learned I was pregnant, I also learned that my first
child (now 19 months) has autism. I am very stressed all
the time from the effort it takes to fight the regional
center and insurance to try to procure services. I write
letter after letter, file appeal after appeal, consult with
moms, attorneys, etc (it's been 3.5 months and still no
services, even though no one denies he has autism) . All
this, and my son is not an easy child (e.g., very limited
communication skills, needs to be engaged or he stims all
the time, always hurting himself because of poor balance and
he doesn't understand ''no,'' still doesn't sleep through the
night, etc.) Because no one knows what causes autism, I
find myself stressed all the time that I will do something
that will hurt this baby, too.
If anyone out there has been through a similar situation, I
would really appreciate hearing how you managed your stress
and coped with all the uncertainy during the long 9 months.
I feel your anxiety and understand that it is such an
uncertain time. I have two boys, 19 months apart. My 3 year
old is Autistic, my 19-month old toddler is not. When I
became pregnant, we didn't know our older one was Autistic,
but it slowly became apparent after our second was born.
Our second son is not autistic, quite the opposite, in fact.
I feel like he's such a gift to my older son...he forces
him out of his own little world, forces him to be social,
and they laugh and play together. A perfect social companion
and life-long wing man!
My last year, however was really stressful. We bought a
house, moved to Oakland -- at the same time we had an infant
and our 2-year-old wasn't talking and was showing autism red
flags. I did go through the Regional Center East Bay for
evals/services and had a really good experience. It all
felt slow getting off the ground b/c I felt such urgency.
We ended up private paying for speech therapy 2x's/week
until the RCEB services started up. We were granted 25
hrs/week of ABA therapy (which STE Consultants
administrated) and 1 hr/week of private speech (Word Works).
The early intervention services were amazing and really
kick-started my son's ability to communicate (he was 2 yrs 5
months when the intervention services actually started and
he couldn't talk or even communicate a simple need.
The good news is you caught it really early, you are on it.
The services will start. I can't advise you with RCEB,
because we had a good experience. (It did feel slow,
overwhelming and confusing though.)
Life feels out of control for you right now, and that is so
hard. Things turned a corner for me when my son started
talking and communicating. A little time had passed, I was
getting used to the dx and I finally had the perspective to
see that he was going to be ok. Life was different than I
had envisioned it, but we were re-calibrating and we were
going to be ok. And that's the scariest, most stressful
thing -- when you can't see down the road and you don't know
if he's going to be ok and you don't recognize what's
happening to your life...and you're expecting. I hope
you're soon able to get to that place where you realize that
he's going to be ok. Be kind to yourself too...you're a
pregnant lady after all. Be well, hang in there, you will
feel so much better when those services are in place.
-Mom of 2
I just wrote the previous post - Mom of 2 - and thought of
some practical advice too -- I'm sure you're probably doing
a lot of this already:
- get a dedicated file box and keep really good files
- get a dedicated notebook and take dated notes on
everything...get everyone's name and contact details
- ask your insurance agency for a case manager for your son
- document everything w/ insurance, have things/promises
sent in writing. (I got bogged down here b/c my insurance
was slow in getting me docs that proved that he was denied
- follow up follow up and stay on people's radar when you're
trying to get the appropriate docs from them.
- consider getting him into speech therapy asap if you can
afford it -- at least it is some intervention; get a
therapist who has experience w/ autism.
- if you live in the east bay, make a call to the Family
Resource Network alameda co. and get their advice on how to
proceed. If you're out of county, they can probably tell
you who to contact. http://www.frnoakland.org/
- keep notes about his development and when things
happened, what concerns are. You'll be asked about them ad
nauseum and you'll be surprised what a blur this whole time is.
- if you know the regional center is going to pay for ABA
therapy, you could look into getting a Floortime therapist
to start coming (something you pay for) as a stop-gap and to
help give you some tools to work with your son. We didn't
do this, but it could be an adjunct to ABA and something you
can start while you wait. You can also get a DVD training
course on this approach.
- I found reading books about Autism just sent my anxiety
levels through the roof. It wasn't helping. So I really
did set the books aside until it wasn't all so overwhelming.
- When Regional Center's services start, you are entitled to
respite care. Take advantage of this. (Depending on your
income level they either pay fully or partially for a
babysitter so you can take care of yourself.) Do you swim?
Now's a great time to start. It's peaceful, meditative
time to yourself, great exercise, inexpensive and a
wonderful stress release. Yoga is too. Start something that
is just time for you.
Mom of 2
Wow, I could have written that exact post, but 6 years ago.
I would say the number one thing that helped with my
situation, at any point during my autism journey, was having
a support group of moms in the same place that I was. Mine
was/is online and an online support group, IMO, is as good
if not better than anything you could find in ''real life.''
Feel free to contact me directly if you want to talk or if
there's anything I can do to help you with what you're going
I just wanted to extend my sympathy for what you are going
through. The way you describe you son sounds so much like
my son. One thinks it is the big symptoms of autism that are
hard (poor communication, tantrums, stimming etc) but even
things like 'poor balance' are hard - for us the poor
balance can just drive us crazy - our son is constantly
whacking us by accident, grabbing at us to keep from
falling, banging into things, knocking things over - it is
physically exhausting to be around him.
We didn't have any more children (too exhausted!) so I
didn't experience dealing with stress while pregnant but I
had to write because I felt so bad for you.
Re the stress, I agree, it is really important to keep the
stress levels down while pregnant - there are several
studies now showing that extreme stress while pregnant can
be very detrimental to the baby. The question is how...
1. join SID-DSI_AllAboutKids@yahoogroups.com - it's for kids
with sensory processing disorder so it is more of a spectrum
group but gives a lot of emotional support & info on getting
services in the school but it is nationwide. Another good
one for just the Bayarea is
Autism-Biomed-Bayarea@yahoogroups.com. I would post your
problems with getting services on both these groups along
with your stress question and see what responses you get - I
think you'll find it very helpful.
2. Get a babysitter, even if I had to borrow money to do
this I would, for the rest of the pregnancy and for the
first 3 months after birth, it is so important to control
your stress right now. Even if you already have a few hours
free each day from your son, he may be too stressful and so
you need MORE time.
3. Thought I'd just throw this out there in case you aren't
already doing it - put your son on a gluten free casein free
soy free diet. When we removed casein, we lost 50% of our
sons symptoms within 2 weeks. This is NOT the case for
every child, only those with a problem with casein. In our
case, it was very obvious that he had a problem with casein
(dairy) as he wanted only dairy and tried to refuse all
other types of food. If you find yourself saying 'but if I
remove xxx then he wouldn't eat anything (fill in the blank
with milk, yogurt, or bread, noodles, etc) then that is a
red flag and probably a problem food that may be causing
I am so sorry for your stressful situation and please know
there are people out there worried for you and sorry you
have to go through this.
My oldest is autistic and I also have two neurotypical
younger children. My second was conceived and birthed before
the diagnosis. I got through the third pregnancy knowing the
new baby would be on an extremely delayed vaccination
schedule and believing that would and did make a difference.
I also tried to make the best dietary choices I could.
I urge you to checkout Julie Matthews
http://www.healthfullivingsf.com/ who is a nutritionist
dealing with both autism spectrum disorders and prenatal
care. She can give you the best advice on what to eat and do
during your pregnancy and what to avoid.
Also, you should read Rodney Peetes book, Not My Boy! He has
a great section on siblings at the end. This child may just
be the best ''therapy'' for your older one!
Lastly, I would envision everyday the joy you are heading
for in raising a typically developing child. Siblings of
autistic children tend to be extremely intelligent, mature,
If you do not already know about Peninsula Parents of
Special Needs Kids (PPSNK), I would encourage you to join
this local listserv. Although the members are largely on the
peninsula/south bay, the posts are often about more general
advise so that location does not matter. It is a very active
and helpful community run by a terrific moderator who
herself found out her son had autism while she was pregnant
with twins. Her son is now 10 years old and she has recently
published a book called ''Coloring Outside Autism's Lines:
50+ Activities for Families with Children with Austism.'' The
listserv is a yahoo group, and you can subscribe at
groups.yahoo.com/group/peninsulaparentssnk/ (I think).
Best wishes to you.
My 10 year-old son who is special needs, obsessive compulsive,
and autistic seems to go out of his way to make me angry at
him. I had a baby over the summer and have an 8 year old son
and because of my 10 year-old's behaviorial issues, I have to
homeschool him. He is an extremely challenging child and has
been since birth. He still has tantrums and will burst into a
rage in public if he doesn't get his way. He's always mad at me
for something and will tell me he hates me. When he gets his
extreme fits for a toy or an outing, I try my best to be patient
and walk away from him if I find my head wanting to explode into
a headache. Lately, I have felt extremely tired and frustrated
that upon my boiling point I start yelling him to stop, he'll
start laughing and laughing, whicn only antagonizes the
situation. I know I can't spank him because I'm afraid of my own
strength and worry I may get carried away. My parents aren't
available to give me a break as they're too dysfunctional. My in-
laws aren't helpful as they are always judging me and my husband
on our son's behavior, which is not a reflection of his
parents. I feel utterly frustated, exhausted, and exasperated
as he takes away so much of my energy, and guilty I can't give
as much to my younger two sons. Sometimes I just wish I could
walk away and never come back but he worries me so much as he
has a hard time making friends and seems to be jealous of my
middle son but thankfully not of the infant. I feel pulled in
all directions. My husband is hands-on and will take him to the
park, help with school work, take him to activities, just take
him for a walk after dinner, and spend quality one on one time
with him and the other boys, so he does what he can after his
full time job, but I don't know if I'm just tired having just
had a baby. Please no negative posts. Negativity doesn't help
me. I have heard more than enough from family and close friends
who simply don't know what it is to live with a child like
this. Thank you.
Oh wow, you have your hands full! I wonder a few things; is your son getting
appropriate therapy? Is there the possibility for family therapy with someone
skilled with autism? Are you absolutely sure homeschooling is the right choice
for your whole family right now? There must be good schools out there for
autistic children, but I'm guessing they're all private. If you are sure about
homeschooling, I would recommend something called Enki
Education...www.enkieducation.org, which has been very popular with parents of
children on the autistic spectrum because of the attention given to sensory
integration. In addition it focuses on the parent-child relationship in a very
positive and unique way. At this stage there is no fixed curriculum available for
your son's age but a consultation with the director, Beth, may be extremeley
helpful in addressing your concerns.
Now, last but NOT least, you need to focus on self-care. Space and time carved
out for yourself, maybe meeting with parents of special needs children in a
support group, or just taking time out to meet your own needs. You have taken on
a huge job, and will burn out fast without support and care anon
My child has special needs and here is my advice to you. PLEASE get some of the
help from public agencies that you are entitled to. First, send your child to
public school immediately. This will give you a break and if he has behavioral
problems at school this is the school's problem--NOT YOURS. I can't stress this
enough. A special needs behavior problem that is happening at school is THE
SCHOOL's problem--NOT YOURS. They have to do what they need to do to control his
behavior so that he and the children around him can learn. He is entitled to a
free and appropriate education and you should not have to home school him because
of his behavior issues. If the local school won't work for him then they need to
send him somewhere else that will work like a special day class or a place like
Alameda Children's Center. Depending on your school district the school
psychologist or district behaviorist may be able to come to your home to help
with behavior problems if they interfere with him doing homework.
I doubt that your son is really ''autistic'' since so many kids with problems
these days are given that label and it doesn't mean much anymore. (Besides you
mention that he is jealous and that he does make friends.) But if he really is
''autistic'' you may be able to qualify for additional help from Regional
Services including a behaviorist and some small amount of money for respite care.
You are doing an enourmous amount of work right now--I can't even imagine trying
to do what you are doing! Please give yourself a break by calling your local
school district's special ed. department and starting the whole evaluation and
placement process. It will be good for your son to be in school with other kids.
Keep after your school district--it is the federal law that your child not be
excluded from education due to special needs.
Also, maybe you can see a specialist who can help you set up a behavior plan at
home so that you can try and deal with your son's behavior in a systematic
manner. I know this is super hard! Sometimes following your instincts about how
angy you feel isn't the worst thing to do--different kids need different amounts
of imput to get the point.
another special needs mom
I know how it feels to have a child who's like this. I often feel like walking
away too (and might if I didn't have other children). You need help, especially
if he's with you 24/7. Where I live (near Fremont), we were able to find peer
counselors -- younger people who are getting their degrees and who are willing to
spend time with our son for much less than the usual therapist rate. If this
doesn't work, run him -- hire young adults to take him for bike rides, hikes in
Tilden, bowling, etc. We've found the more tired our son is, the easier our
evenings are. Have you checked out special schools -- Star Acadmey in Marin for
example so you have some time away from him? This is a frustrating, exhausting
situation and I really feel for you. Another Mom of Angry Child
The situation you describe must be incredibly stressful. With your son's
symptoms there is no way that this is just ''bad''
parenting! You need a break and you need support. Here are a few thoughts.
First, perhaps you should reconsider the home schooling. Your school district
has a responsibility to provide schooling for your son that takes into account
his special needs.
Insist on an evaluation, and if necessary, pay for a second opinion from an
educational psychologist. Are you aware of any private schools or boarding
programs that could help your son?
If this is the only way to give him adequate schooling, then the school district
must pay for it. (For example, our school district has paid for students to go to
the RASKOB institute in Oakland). It takes a lot of persistence, but it may be
worth the effort. Second, see if you can find some books on raising an autistic
child that you can share with your in-laws. Talk with them frankly about how
difficult it is for you and your other children, and see if you can arrange some
type of respite time with them. If they cannot provide help with your oldest son
themselves (after all, he sounds very difficult), perhaps they or your family
could chip in to provide for a helper who comes in occasionally for your son, or
they could take the other two, to give them a break. (My son went through
explosive rages for several years at about this age, and I would take his toddler
brother, and his sister if she would go, over to the neighbors until he was back
under control--embarrasing, maybe, but it wasn't like they didn't hear what was
going on, and they were very supportive, not judgmental). I found having a
diagnosis was very helpful with my family and friends, so educate them with
books, documentaries, web sites--whatever you have at hand.
There is an organization headquartered in Berkeley--DREDF http://www.dredf.org/,
that can provide a lot of info on the rights of parents of kids with disibilities
(which is what your son has). I wish you strength, patience, and luck in dealing
with this Anonymous
I hear you, and you have my support. Sorry I don't have any more specific advice
than that, other than to say you sound like you're doing the best you can. Is it
possible to get connected with a support group for parents of special needs
and/or autistic kids, or find some resources for respite care? You need to take
care of yourself, too Anon
Sorry to hear you are having such a rough time. I volunteered at the Son-Rise
Institute in Sheffield, MA. They have an amazing family program for working with
Check out their family programs. For info check out www.option.org Also, you
might want to consider checking out the Landmark Forum-its a personal development
and empowerment program that is really wonderful. www.landmarkeducation.com
Best to you, David David
Growing up, I was the oldest and the only girl. My middle brother was VERY angry
and while not autistic, I think in today's age he would have been tagged with
some learning disability. My mom and dad did family therapy with him for a few
years, from 8 to about 12. While it wasn't anything miraculous, it helped my
very blue collar (and in my dad's case, no high school diploma) parents get a
better grip on different ways to deal with him.
Fast forward t m y youngest brother, whip smart and a different kind of angry,
more internal and crafty, but stubborn. He and my mom started to lock horns when
he was about 13 and because of my mother's anger and frustrations, by the time he
was 14 they were having full-on physical fights - my brother kicked her in the
chest once as she ran up to him laying on the couch, she punched him in the face
hard while wearing rings with hard stones in them. I could go on.
School was complaining about him, other parents... so he entered therapy as well.
Therapist asked that my mom and dad also go, but my mom got uncomfortable after a
few sessions of seeing that she would need to shoulder some blame and she refused
to keep going. At that point, the therapist suggested that under the
circumstances, it would be best if as soon ans my brother started pushing my
mom's buttons she would call my dad up and then walk away. If he was anywhere
but work, he needed to drop everything and come home and deal with it. (I should
add in here that my dad was very hands off when I was my brother's age - my mom
was working FT and keeping house, going to PTA meetings, being a housewife and
working and my dad was for way too long living the life of the 50s dad who
worked, came home, cracked open a beer and watched TV until dinner was ready).
So they tried that and to this day my mother said it saved her marriage, her
sanity, AND her relationship with my youngest brother. For years, they barely
dealt with each other beyond pushing buttons a little and then my dad stepping
in. And then one day, it seemed like my brother snapped out of it and by then,
after years of therapy, my dad finally stepped up in his own ways, and today,
with her children 38, 35, and 32, you'd have never guessed how incredibly screwed
up our house was (unless you looked really closely ;) )
In any case, I am not sure if ANY of this might help, but I wanted to give you
hope. What helped my mom was being somewhat absolved of dealing with my
brother. Maybe you need a long-term break of sorts
Dear Sad Mom,
First let me say, my heart really goes out to you. You are dealing with a huge
amount at once (3 small kids alone is challenging enough, and then to add to the
mix a child with very demanding special needs) while you are just trying to get
through the crazy making post-partum period.I have two sons, the older (7) has
special needs (mostly social communication
issues) but he is, thankfully, also an extremely loving and upbeat guy. Even so,
I couldn't do it alone! And you should not try to! I think it is a big mistake to
homeschool this child.
If he has OCD and autism, these are serious issues, and you and he need as much
good, professional, caring help as you can get.
He deserves to have the support of good special education teachers, counselors,
aides and other professionals provided by the public school and (if you can at
all swing it) as much private support (therapists, babysitters) as you can
This is not only for your benefit (though I believe, from my own experience, that
it would go a long way towards helping you feel a lot less alone and desperate)
but for his as well. He truly needs the help of people who know how to deal with
his problems, and who can steer him towards confidence and success.
He might very well be a lot less angry and tempermental if he had this kind of
support; He might also behave better towards you if he had more time away from
you. I think that you also could benefit from having time and space away from
him, AND from talking to a sympathetic counselor who could help you deal with
your (justifiable) frustrations and angers, and who could help you devise a plan
for creating a special "village" to help you raise your children, particularly
your eldest. Believe me, I know it is not easy, but I implore you to get some
really good professional help for your son and for you. Start with an IEP in your
school district (call up the office and they will tell you how to get started).
Please get a babysitter right away to give yourself some breathing room so that
you can start moving towards getting the help you and he need! Please email with
questions/for refs firstname.lastname@example.org
I feel for you. My son is also challenging, and impacts our lives a lot. Things
that help me are humour (is your son able to laugh at himself?), getting breaks
(it's worth paying for), and most of all taking care of myself. The ways I do
that are exercise; getting regular bodywork that incorporates the mind as well;
and a spiritual practice and community. For me that has involved meditation
(James Baraz has a wonderful beginning class in Berkeley on the Spirit Rock
website)and 12-step programs, which are very much about giving yourself space,
Regular time that I take care of myself has been essential, and it's so worth the
effort and possible expense. Knowing my own limits, and replenishing myself. It
is very hard to have a challenging child, and people with easy kids have no idea
how hard it is. But there are things you can do. Antidepressants have also helped
me a great deal. You may also want to consider therapy for your son with someone
knowledgeable about these issues.I wish you the best anon
Sad mom, I know EXACTLY what you are experiencing: my 12-year-old daughter is
obsessive-compulsive. She has been ''challenging''
literally since birth. The tantrums made me flash on ''The Exorcist''! She was
uncontrollable when she'd get into a fit. NO ONE UNDERSTOOD what we were going
through. My advice: if your son has OCD(verified by examination by a qualified
psychiatrist) and you are not medication-aversive, run, don't walk, to a
pediatric psychiatrist and try medication. My daughter was diagnosed at eight,
but it wasn't until she was 10 or so that the rituals began to look like the
textbook variety of OCD. Prior to that, I think the tantrums and anger (yes, she
would yell and scream about how much she hated me) stemmed from her complete
inability to control the things she *needed* to control.
Obviously, a child is in control of very little. We dropped out of any social
life, never took her out to restaurants, didn't press for new playmates or
playdates. I didn't realize just how far it had gone until her ''normal'' little
brother was born, and he wasn't like her at all! I reached the breaking point
last January with my daughter, after cognitive-behavioral therapy didn't work,
and her rituals started to consume hours of MY time as well as hers. We got her
on sertraline (brandname Zoloft) and inched up the dosage over the course of
several months and ...
although it's not 100%, just imagine losing maybe 70 to 80% of the rages, the
tantrums, the anger and frustration! Rather than feeling sad that she's on
medication, I just think about the chemical imbalance that causes the erratic
behavior and feel grateful that there's a way to give her some relief. I would
love to tell you how she feels and how this affects her, but she doesn't talk
about her feelings. She is grateful for the medication, and I actually LIKE
being with her now that she isn't tormented by needs that she can't fulfill. I
know what it feels like to just want to walk away and not look back. I can't
share my name with you because I am not willing for other parents on the
listserve to know my child's ''secret'' - it's hers to tell or not, and I must
respect that. My heart is with you and your family. This is a painful disorder
for all of you. Sad mom, too
Dear Sad Mom,
I really hear you. What you're dealing with is a lot, and I just want you to know
that you're doing a great job in a VERY challenging situation. Blessings to you
and your family. I don't personally have experience with a special needs child
with your son's challenges, but I have homeschooled and I know how much it takes
even with a normally, spirited, energetic, willful and sometimes, ''full of
attitude'' child! Even with a helpful partner, it sounds like you still need more
support, regularly scheduled time to yourself for rest, and recouperation of your
own spirit, AND some healing. I can only point you in a direction I have
personally taken and you can choose whether it works for you or not. So here
goes... I personally have done lots of ''spiritual healing'' work and have been a
student of many modalities over the years. I now practice two forms of energy
work, a couple which may be of interest for you personally, and one which may be
of particular relevance for your son's' condition.
I would gently suggest you talk with David Demeray of BioGenesis. His family has
a wonderful set of ''tools'' which are working very effectively for many people.
The great thing is, anyone can use the tools, they're very simple and easy to
use. If you speak with David or his mother Linda, I would suggest you ask them
about the boy who recovered from very disabling OCD. It may give you hope and a
resource, not only for healing for your son, but for your entire family. There is
much assistance and guidance for all of us if we open up to it. Thank you for the
courage to expose your struggle and ask for help - that is always the first step.
I will post another response with David's contact info, (the website is
www.BioGenesis.us), however, I don't have it with me right now. In the meantime,
please feel free to call me or email me and I can get the info to you that way. Take care of
yourself and thank you for your courage in sharing your struggle - you are a very
patient and caring mom whose family is fortunate to have you loving them the way
you do. Bless you Laura
Even with the social skill level of your child, he can learn to respect you, be
responsible and fun to be with. You may wish to call Virginia Keeler-Wolf to
discuss your son (510-339-9363). The other support that may help you is reading
Nancy Thomas' book, WHEN LOVE IS NOT ENOUGH. She discusses in detail how to work
with children who have behavioral issues. Her first instruction is: Take care of
yourself! And she gives you ideas about accomplishing that. Certainly your
hormones after birth may contribute to overwhelm now, more than at other times.
I would encourage you to take cod liver oil or fish oil to assuage any postpartum
depression. Further, breast fed babies of moms who take DHA/EPA (fish oils) have
significantly higher IQs.
We began working with Virginia with our son, who also has similar issues, and the
change over the past few months has been remarkable. I hope this will also work
for you and your son.
Been there too
I read your post and had to respond right away. I feel for you and your
situation! Although I don't know what it's like from a parenting perspective, I
worked with kids with autism and know how incredibly challenging-nonstop!-they
can be. Despite what some claim, I do not believe that autism ever ''goes away,''
and to me it's the most challenging disability you could be faced with as a
parent. Clearly you need help and support ASAP. You mentioned how much your
family is able to help-or not, but I'm wondering what other sources of support
Were you ever involved with the Regional Center or the state program for older
kids with disabilities? I'd think they could connect you with other parents
facing the same issues that you could at least commiserate and share information
and support with; autism has become so prevalent in CA recently that you have
lots of company. It sounds like the homeschooling-having your son home 24/7-is a
source of great stress. Trying to provide for all of his needs-while also taking
care of your other kids-is just too much. Do you ''have'' to homeschool him? He
sounds like a prime candidate for services either in a public, private or
''special'' school, paid for by your local school district. I'm also (slightly)
aware of an organization called BIA that does home behavior therapy/education
with kids with autism. There's also an advocacy organization-and I hope someone
will write in with the name-that helps parents advocate with school systems so
that the child's rights under ADA are observed and needed services are made
available. You'd also be eligible for some respite care, I would imagine-someone
trained who could watch your son periodically. I could see how you wouldn't have
time and space to investigate these things, but please do what you can, or ask a
friend to help-so that you get the kind of support and resources that will make a
difference for you and your family for the long-term. Feel free to email me if I
can help you track down some resources.
I work with children who have autism and the behavior you describe is not
uncommon. I don't think there is much you can do on your own to fix this. Do
you belong to any parent support groups for families with autism? They could be
a lot of help and a great resource for networking. An expensive, but pretty
effective option would be to find a private behavioral consultant who could
design and implement a behavior program for your family. I'm not talking about
the general behavior analysis that school/regional center does but a private
Nanny 911 style of program. Families who have had this done have had good
Unfortunately, your son will only get stronger and bigger and you need to
think about keeping him safe, which is why an expensive consultation may be worth
it in the long run. Good luck anon
Hi, I work with many autistic children. The frustrations you are communicating
are valid. When you live with a child with special needs every day, then you
understand. I had great luck with the sensory learning program to help with the
rage of my own son, among many other things. If you would like some more
information please just e-mail me. How your son handles his sensory input really
can help shape his behavior. I wish you all the best, Take care, Bryan
I am also the mother of a special needs son, and I spent several years trying
different private schools and homeschooling before I gave up, moved to a good
school district and put my son in public school where he received a ton of
The extra support took the strain off our relationship and he has improved
immeasurably. Even if you don't take this route, you are eligible for services
through Regional Center (like respite care, which it sounds like you could
Having an autistic child is too stressful to manage alone and autism is
responsive to intervention. You say you come from a family that is dysfunctional,
isolation-- trying to go it alone--can be a symptom and a perpetuation of that
dysfunction. Please get the help you all need.
Glad I Surrendered
I have a toddler in a home based day care. The day care consists
of mainly infants with a couple of toddlers and one elderly
adult assistant (along with the main provider).
There are 7 full timers and one part timer (two of her schoolage
kids come home halfway through the day). Last week she had a 9
year old autistic child ''drop in'' for two days.
This week he has joined the day care. There has been no open
discussion. The child does not speak and loves to go outside
(will bolt for a door if he sees the opportunity, pushing out of
I am a compassionate person and all for inclusion, but am
concerned about the age difference and mimicking behavior
inappropriately. I am also concerned that my provider and the
assistant are not adequately trained to manage this situation
(especially in the event of an ''episode''). I questioned her and
was told that the child ''doesn't hurt anyone.'' That was not what
I asked her when I got that answer!
I have a very dear friend that has a masters in special needs
and her opinion (based on her specialized training) is that it
is completely inappropriate for a 9 yr old with special needs to
be around toddlers. Aside from the toddlers mimicking him, the 9
year old will mimick the toddlers. It's one thing when a two
year old mimicks another two year old hitting, scratching,
pulling, but when a 9 year old mimicks a two year old hitting,
scratching, pulling, someone can get very hurt.
I am trying to discuss this with my provider but feel like my
attempts to openly communicate are not being honored......
one mother has already abruptly removed her child! I am already
looking for alternates....
any advice, would be highly appreciated......
I am the mother of a seven year-old autistic boy and a teacher.
There isn't a simple answer to your question about whether it is
appropriate for an autistic child to be included in a home day
care with toddlers. It would depend upon the child's behavior,
the attitude and number of the adults providing the care, and
the attitude of the other parents and children at the center.
Licencing laws for the home day care require that the provider
make resonable accomodations for a disabled child. Assuming that
the autistic child is comming to her after school, and the the
provider has school aged children of her own, he is with his
peers in the day care enviornment. If the autistic boy isn't in
school, that's a whole different matter out of the scope of this
With due respect to your friend who is an expert on special
needs children, no two autistic children are alike, just as two
typically developing children are alike, so her judgement that
an autistic child should never be included with young children
is too simplistic. Many professionals in child development and
education have little if no training about developmental
disablities. Teachers training is about typically developing
children, unless the teacher is aquiring a supplemental special
education credential. I have had to explain my child's
discrete-trial training at school a pediatrician.
Autism is a spectrum disorder. If a child has enough
characterstics that indicate the disorder a diagnosis can be
made, but all autistic children do not behave identically, since
they won't share identical characteristics. For example,
autistic child may be very ritualistic, while another may only
be slightly so. The stereotypical autistic kid who bangs his
head or flaps his arms all day is just that - a stereotype -
they're all different.
Aggressive behavior would be a reason that the child might not
be a good fit for this daycare. Many people believe autistic
children are always aggressive. My son is extremely passive and
has never shown aggression toward anyone. As a toddler he just
seemed like a passive, shy boy. As far as the possibility of
the autistic child immitating two and three year-olds aggression
in day care, I wouldn't worry, most austic children don't
immitate other children. Their aggression is a symptom of their
frustrated attempts at communication.
Bolting is another reason the daycare enviornment may not be
appropriate if the provider cannot provide for the safety of the
autistic child and her other children. When you ask her about
this behavior, ask specific questions, ''What action will you
take if ''Billy'' escapes? How will you supervise the other
children if you need to go retrieve him?'', ''How often does he
escape?'' ''Does he stop when told to?'' She probably answered
your question with ''he doesn't hurt anyone'' because that is what
she thinks you're concerned about aggression. The provider also
probably felt defensive both of herself and of the autistic
child, since a parent abruptly pulled their child from her
care. It's an answer people often give when people are
concerned about wierd, but otherwise harmless common behaviors
of autistic people, like hand flapping, ordering toys, making
odd noises, ect. A lot of people, even if they don't admit it,
just don't want to be around people who behave differently, even
when the behavior isn't harmful.
If you're concerned about the provider's training, again ask her
specific questions, such as ''How do you communicate with
Billy?''. ''Does Billy respond to your commands?''. ''How does he
communicate his needs to you?'' While teaching an autistic child
requires a lot of apecialized training, providing care for a few
hours after school would not. Many non-verbal children are
taught to communicate using picture cards, so if he brings her a
card with a picture of a toilet on it, she would know, with or
without a lot of training, that meant he needed to use the
I hope you can open up better communication with your daycare
provider. I think being specific in your questions will help.
With the increase in the numbers of children being diagnosed
with autism, we will need more people who are open to caring for
them, and we will all need to be tolerant of their differences.
I'm the parent of an autistic child. If you trusted your daycare
provider to care for your child before the austistic child
arrived, then you can continue to do so. Your typical child will
mimic the majority of typical children and will easily learn to
distinguish appropriate from inappropriate behaviors - just as
any typical child amongst other typical children will do under
appropriate supervision. The typical children in my childs
school are happy, well adjusted kids. There's a 3:1 ratio of
typical to autistic kids in this school. The kids start at the
age of 18 months and go up to the size and chronological age of
6 or seven. From what I've seen, these typical kids are also
learning to be more accepting, helpful, and less judgemental
than many young kids can be. As for whether it's approriate for
the 9 yr old to be there with toddlers...that's a matter for
his/her parents and the daycare staff to determine. Yes, it
would probably be better for the autistic child to be around
somewhat older typical children. However, this might currently
be the safest, most loving, practical situation that the parents
have found so far. Is the level of ''teaching'' and activities
appropriate for this child? If you want to get involved in this
child's life to ensure that he/she is getting what's
appropriate, as you might a blind child or one with cerebral
palsy, - that's great. However, unless this child has a serious
aggression problem apart from his/her autism, then the child's
presence should be a non issue for you.
I'm the mother of an autistic son who is now 14 years old. He has
a twin sister who is "normal". We've been through all of what you mention,
and then some. Please do not be terrified. Diagnoses will change and
often experts disagree. The "autistic spectrum" of disorders is enormous
and the words wind up meaning very little. The best advice I ever got
was from our son's first speech therapist who said to me, " Don't
worry about the labels. Just do what works." VERY good for directing
the heart and the energies. Whatever the problem is, or wherever she
fits on the spectrum, "autism" is not a death sentence. The progress can
be astonishing, but it sometimes happens so slowly (until we look back at
it with perspective) that it evades us. (Watch any child's development in
Do not put all your faith in any particular diagnostician's
opinion. Put your faith in your daughter and yourself and your husband.
But DO proceed quickly. Early interventions are the best, and the sooner
you are aware of the possibilities and her individual needs, the better for
her and for you.
I, too, had all those fears and questions, all those unknowns, all
that terror and waiting for appointments that you are experiencing. But
now, I've got some hindsight. I longed for someone to talk to, some other
similar children to observe, any one who could tell me what was happening
to us all. Please do feel free to contact me. I would be happy to talk to
you, for however long, and give you whatever benefit there is of our own
references, stories, experiences, etc.
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