Advice about Autism
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Advice about Autism
May 2007
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
joins them).
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
him.
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.
It's possible
that he has PDD-NOS (Pervasive Developmental Disorder-not otherwise
specified).
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
school.
People with mild forms are quite able to sense emotions in others and
express their
own. My son, who has Asperger's Syndrome and had severe symptoms at age
6,
was still able to form a close bond with me and express affection. I
would
recommend that you have your son evaluated and see if he does fall into
one of
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.
Nancy
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
provides.
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):
http://www.thebayschool.org/links/links.html
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.
http://www.anachronisticmom.com/Medical-KK/Autism-K15.html
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.
peninsulaparentssnk-subscribe[at]yahoogroups.com
And finally, here are some links from berkeley parents network:
strawberry canyon social skills camp:
http://parents.berkeley.edu/recommend/summer/strawberry.html#social
http://parents.berkeley.edu/recommend/therapy/socialskills.html
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!
another mom
I'm not an expert, but I do understand that the spectrum for autism is
vast. Perhaps
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.
Jill
Look in to Asperger's Syndrome. It was the answer for my son.
read up!
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
was
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
for
me, and I bet your son would benefit from something like this. There is
a
Bay Area therapist who specializes in this imaginative play therapy, but
I
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.
Elizabeth
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!
anon
Hi,
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
http://www.autisminstitute.com/
Another site which focuses on Aspergers and has resources listed
for teaching social skills is
http://www.udel.edu/bkirby/asperger/
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.
teacher
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.
Good luck!
Emma
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!
Kathleen
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.
Bryan
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.
good luck
April 2007
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.
anon
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
with
http://autism-pdd.net/ - Lots of good info, including a very active
support forum.
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!!
Jill
There should be a regional center in her area that can offer some sort
of assistance.
kevin
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
Feb 2007
Wondering which school district would be better for a child with
autism and visual impairment...Orinda or Berkeley
parent of special needs boy.
parent of four year old boy
I've had good experiences with Berkeley USD so far, but I think
it may just be luck and not necessarily because the district is
all that great. I've heard FANTASTIC things about Orinda, though,
and if you can afford to live there, you definitely should!!
Jill
Our experience in Berkeley was not as good as the previous poster's.
Your situation will be somewhat different from ours, since our
autistic child is so high-functioning that he eluded diagnosis until
well into elementary school. We found that classroom teachers and
even special ed staff in the elementary and secondary schools had a
low level of awareness about his learning disabilities, so he rarely
had effective academic support and we faced constant struggles.
Outside professionals who helped us said that in their experience the
staff in many surrounding districts ''got it'' much better. He had
three good years of speech and language services, but there was a lot
of luck involved.
This doesn't exactly answer your question, but have you looked into
Lafayette? My information is a few years old, but I've heard from
parents and providers that the Lafayette district was much better than
average for students in special ed and also good in general. Orinda
parents I talked with were enthusiastic about their schools for their
typically-developing kids but warned me that it was not as good for
special needs students. We found it a complex decision, once you
factor in other things such as the availability of independent
providers, the Regional Center, etc. A lot depends on the individuals
who are working in a district at a given time, so things change.
wishing you the best
December 2006
My 3 year old son was diagnosed with PDD/NOS when he was 2
years old by the East Bay Regional Center. His been getting
services through them for about a year now. He currently gets
in-home ABA, Speech and OT. He has made great progress and we
have him in a mainstream pre-school with an aide 2 days a week.
Here is my concern and I need advice....
Because he is turning 3 in December, the Regional Center can't
continue the services and we now have to go through the school
district. It's the San Ramon School District. We had our first
IEP meeting on Tuesday and we ran out of time. There was just
so many questions I had. We have to schedule another meeting. I
am very concerened because what they are recommending for my
son is Special-Ed classes, the CEIA Center and their services
through the district.
Has anyone gone through these services?
How was your expereience?
and what would you recommend?
Has anyone had to fight with the school to keep the services
they have?
I would love to talk to someone who has gone through this
because I'm on information overload and have so much
information and not sure what to do. I just know that
the ''appropiate'' services for my son should be what he is
getting now. I know my son the best.
Any advice or input would be greatly apprciated.
Nilesh
The CEIA Center seems to be a pretty good program. The lead behaviorist is new
(which is a nice/good change from last year) and I think she has a great feel for
the
kids and the program. Have you had the chance to visit the program? San Ramon
is
a good District but you need to be on top of things. The District has been
heavily
impacted by the growth and development in the community and therefore are short
staffed. It is my understanding that the District is short staffed on Speech and
OT's
and that they have been contracting out and using the family's current therapist
through Regional Center so that the kids are not without services. As for the
Special
Day Class or CEIA center...not sure what they are recommending for your child so
I
can not really comment. The only time a District will consider paying for
current
services is when they have no place to put the child due to overcrowded
classrooms
and that is also only short term until they open up new classrooms, etc.
The biggest shock/adjustments families have to make when transitioning out of
Regional Center Early Intervention Services is the change in services. Some
families
supplement the District services by paying privately for other services. If you
have
someone from your ABA program that can attend your IEP that would be great or if
you have an advocate. You can call DREDF or CASE or your Regional Center Case
Manager for advocate information. anolther thing you should get is the book, ''A
parents guide to an IEP.'' You can get it through Nolo Press in Berkeley.
Good luck.
anonymous
I belong to a few yahoo groups who seem to have many parents in the San Ramon
district and they overall do not seem happy with the district. What you are being
offered sounds very similar to what my 3 year old has in the Mt. Diablo school
district and it is really working well for him. He has improved dramatically. He
is
scheduled so much of the day that I really don't want additional services. But,
as we
all know with autism, every kid is different and individualized programs are what
they need. But we also live in a time when school districts have very little
funding...from our pathetic state education funding AND the federal funding. I am
going with the services offered for this reason, and staying on top of things and
vigilant to make sure they are what he needs. I also know as a mom to two kids on
the spectrum who works closely with both children every day that my time is
precious, and I don't want to waste my time with them in battle with the school
district and with lawyers, as long as I see the kind of progress I am seeing. I
see this
happen with a lot of autism parents. So...good luck getting what your child
needs! I
wish you the best.
parent of two ASD kids
Hi Nilesh! My son gets in-home ABA, is enrolled in a full
inclusion preschool class with a full time 1:1 aide, and it's all
paid for by the school district. I'm happy to talk to you about
my experiences, please feel free to contact me directly.
Jill
Dear Nilesh,
A really good book that addresses these issues is '' Autism
Spectrum Disorders'', by Chantal Sisile-Kira. She has an
information packed chapter on how to deal with the system, what
your rights are and how to get the best education for your
child. If you don't have the book, go get it. It's published by
Perigee.
lorrie
May 2006
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
similar situation.
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.
From,
A sad Mom who knows things will get better...but is just
crushed right now
T's Mom
Breathe -
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
work.
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
OF DIFFERENCE.
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!!
Jill
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
few.
The bottom line is Keep Trying, the therapies and dietary
modifications do improve quality of life.
Bryan
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.
anon
This is a correction to a previously submitted letter (added
school name)
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.
sam
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.
Anonymous
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.
Ayelet
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
work
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,
Sirena
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
your family.
Here is his contact information:
Dr. Dave Traver M.D., FAAP
1261 E. Hillsdale Blvd.
Foster City CA 94404
650-341-5300 phone
Jenny
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
classical homeopath
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
Tara
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!
Pamela
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.
Kathie
March 2006
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
program.
Jill
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.
mma
Feb 2006
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,
almost
like a boy. In Korea where he lives, there are almost no opportunities
or
support for people with mental disabilities. I am an only family he's
got
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
get
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
possible.
loving sister
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
Email: info[at]ilrcsf.org
There is also the Family Resource Network at 5232 Claremont
Avenue. Oakland, CA 94618. Tel: 510/547-7322 website:
www.frcnca.org/region3.html
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.
mma
Feb 2006
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.
Sad Mom
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
Hello,
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
Autistic children.
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
anon
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
afford.
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 jerechter@yahoo.com
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,
letting go.
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
you've investigated.
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.
jkh
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
success.
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
Dear Mom,
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
services.
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
certainly use).
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,
and your
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
August 2005
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.
Nat
Hi Natalie,
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.
Good luck!
anon
Hi,
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.
Nancy
May 2005
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.
Nancy
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:
http://www.bridges4kids.org/IEP/FBAPBSsample.html
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.
Anon
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.
asymetry
August 2005
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.
Jill
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:
http://msnbc.msn.com/id/9074208/
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.
Anon
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
google search.
Anon
A good deal of information about chelation generally can be found at
http://www.quackwatch.org/01QuackeryRelatedTopics/chelation.html
and specific to autism at
http://www.quackwatch.org/03HealthPromotion/immu/thimerosal.html
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.
Karen
Jan 2005
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?
Advice, please!
worried mom
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.
a mom
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.
Fellow mom
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
is normal.
-Been there
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!
mm
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
encouraging.
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!!
Alena
December 2004
Hi,
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
the way).
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......
anon
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
newsletter.
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
toilet.
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.
anon
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.
anon
Oct 2004
Any advice on how to find a person who is good with special-
needs kids to engage my 9-year-old son in various activities
after school up to 4 days/week?
Could include help with homework, have friends over, supervise
minor home chores, go to park, kick a soccer ball, go to
library or other short outings, etc.
Prefer someone with background or training with kids who have
autistic-spectrum disorders. My son is high-functioning (PDD-
NOS) and in a regular-ed classroom, but he does need extra help
negotiating the world.
I have posted to the BPN Childcare Digest but feel it is likely
I will need additional sources to find this special care-
giver.
If you can suggest any ideas on where/how to go about this,
please let me know. Thanks.
Beth
Both Mills and Merritt colleges have education/special-ed programs with
enthusiastic and talented students. I'd start by calling their placement
offices and asking how to best advertise your position to these students.
Loved Our Grad-Student Babysitter
Aug 2004
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.
Thanks.
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.
Star
Hi,
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
situations.
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
read it:
http://www.epinions.com/kifm-review-6F79-1A99C62D-384F1A22-prod1
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:
http://www.journeyofhearts.org/jofh/kirstimd/holland.htm
Again, I commend you on your approach to all of this, and I
hope things turn out well for you and your family.
Cornelia
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
Jan 2001
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
appreciated.
Thanks a lot.
Lily
July 2001
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.)
many thanks
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.
holly
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.
Advice from parents with autistic children
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, "Tobie. 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
"real time".)
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.
If I were a parent of a young child these days I would be VERY VERY careful
with allowing diagnostic labels attached to my child, and the kind of
reflexive drugging for those "diagnoses" that seems to be the fashion now.
Once your child is labeled, perhaps incorrectly, it is hard to shake the
stereotyping that goes on with subsequent caregivers, who tend not to
question previous conclusions and think for themselves. And the child's view
of him/herself may be affected deeply by such labels.
I am a health professional. My ex-husband was a neuropsychologist at a
famous clinic to whom every problem looked like an occasion for Ritalin or
some other psychoactive drug. For years I fought him tooth and nail about
drugging my child (I won, as the kid lived with me, and dad lived in S. CA
and hardly really knew his own child). My child, who supposedly would never
amount to much, is now a perfectly well adjusted, very smart adult with a
well-compensated learning disability I noticed at age 2 that was helped
greatly by positive therapy for learning strategies (Dean Lobovits in
Berkeley, a great guy) and a good private high school (St Mary's in
Berkeley, they were beyond fabulous). NO drugs were given. And I managed to
overcome most of the negative messages given to my child about his alleged
neurological defects, by his father, to whom he was more of a clinical case/
diagnosis than a loved son. I was reminded of the saying that to the
carpenter every tool looks like a hammer. By the way, Ritalin has now become
a drug of abuse, outside the medical setting, and perhaps in it as well.
(See Peter Breggin MD by doing a search at www.google.com )
I have had recent extended professional contact with children labeled with
this ASD diagnosis and frankly I thought that in some cases the parents were
a bit too accepting and that the symptoms were a matter of interpretation,
or over-interpretation, of simple behavior problems that were not being
addressed. In several cases I've seen over the years of very troubled kids
(seeming incipient personality disorders) the parents were therapists. I
didn't know whether to be surprised or not.
Not knowing either you or your child or the circumstances, I certainly
cannot offer you any advice other than extreme caution and to encourage you
to get several evaluations and opinions over time from people with different
perspectives with whom you feel rapport and trust as a condition of working
with them. A pediatrician whom the child doesn't like is a red flag warning
to me, especially since he/ she has now pronounced your child "off" or ASD.
Pediatricians don't necessarily know all that much about neurological /
psych disorders. Your daughter may have a learning disability or several
different ones. These can be remediated without drugs, with some work on the
part of the parent. I know, I did it, even as a single mom with limited
resources.
One of the most important things to know is to encourage the child in the
direction of his or her strengths. And to set limits on behavior that is not
acceptable in a firm but supportive way (that is not currently in fashion).
In short, what you would do for any child you were really deeply committed
to. I think being a parent involves tremendous time, effort and dedication,
and frankly it seems easier lately for some people to pop a label on the
kid, give a drug, call in a nanny and drive off to work. I consciously
dropped some of my work and activities for a period of years to focus on
helping my kid. Sometimes that's what it takes. It was well worth it.
Good luck to you and your child.
I've been reading the daily web journal of a woman with a child who was
diagnosed as being on the autistic spectrum. It's interesting to me,
although my children are not autistic. I think it might be helpful to you
-- and you might be able to contact her for further information. The
address is: http://www.berkeleyplace.com/visions/visions.html
--Chris
Treatment for autistic child
Oct 1999
My nephew (18 months) has been diagnosed as autistic and we are
researching the best available options in terms of centers that offer
behavior modification therapy / Lovaas method / TEACH. Any advice will
be much appreciated. We are particularly interested in the services they
offer for infants (18 months to 2 years old) and whether they provide
at home treatment? What is the approximate cost of these services?
Some other questions include,
What sources are there for getting trained / experienced / skilled
behavior modification therapists (for children aged 18 months+) for at
home treatment? What would be the approximate costs of these services?
Same question as above for speech therapists?
The family is willing to move anywhere within the US to obtain the best
possible services for the child. So, if you have centers to recommend
in other areas please do let us know about that too.
I don't have any direct experience with autism myself. But I happen to be
taking a class right now, called Choosing to Live Happily: An Introduction
to the Option Process. The author of this process, Barry Neil Kaufman, has
written a number of books on his own experience raising his autistic child.
One I know is called "Son-Rise." Evidently, they were given no hope for
his child, and encouraged to institutionalize him. They chose instead a
radical departure in approach, and within several years, his son *came out
of his autism* and has grown up to be a normal, even gifted young man. The
story sounds just amazing to me. He and his wife have a business called
the Option Institute (http://www.optioninstitute.com/). I just surfed
there and found that they have a program for treating autism
(http://www.son-rise.org/). Certainly if you have not heard of them I
would recommend going to the site and finding out more.
Good luck with your journey.
About Barry Neil Kaufman and his foundation, The Option Institute:
I have a son with developmental handicaps, so I am interested and somewhat
educated on the subject. I have read the book you have mentioned here, and
I want to caution any parents of a child with autism or related syndromes.
The book read well and made sense. The process and the story may have
merit. My concern is that the flavor and substance of the book, as it
proceeded, were much more akin to the expository rant of a televangelist
than of a disciplined scientific mind making reasoned observations. By the
time I finished the book, I had a very uneasy feeling about his broad,
hyperbolic claims of what amount to a panacea for a disorder that is not
simple: not simple to diagnose, not simple to live with, not simple in its
manifestations. In fact, the diagnosis of autism is a bringing together of
multiple complex symptoms, some subtle some gross, some mysterious, and
always exhibited in different combinations from child to child. The term
"autism" may be (or should be) on its way out since it is such a
hodge-podge of individual developmental disorders which may not even have
common sources from individual to individual. The gist of it is that the
diagnosis is ceasing to be helpful in terms of "what to do".
So: "what to do"?
Do read the book, but please put your critical faculties in high,
omnipresent gear. This is terribly difficult, maybe impossible, to do if
the subject is so close to the soul and so painfully real as when one is
the parent of a child with similar problems. Kaufman is a bright man. He
must know this. His very few "caveats" positioned through the text were
not enough, not loud enough, not meant to be convincing. I suspect this
preaching, or any evangelical behaviour, but when a life is at stake, I am
doubley disturbed. We are connected from core to core with our children,
and would do anything to help them. Kaufman's cure may have some validity
in certain cases. Which cases? To hear the word, "autism" applied to
one's own child is a life changing moment we can't possibley comprehend
until that moment occurs. It makes one desperate, grief stricken, forever
altered. Someone holding out a cure is more than tempting, it is
compelling. But without some objectivity and a healthy dose of doubt, it
will be impossible to tell whether the cure being offered is a potentially
useful therapy, or an instant shot of novocaine.
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