Advice about Asperger's Syndrome
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Advice about Asperger's Syndrome
Questions about Teens & Pre-Teens
''Sally'' was diagnosed with aspergerss the summer after 5th grade. Because she
doesn't have the more extreme asperger-ish traits, but instead only has a handful
of traits that make others see her as a loner/quirky/superbright, we have
hesititated to tell her of this dx for fear she'd self label. Now she is
battling with cutting herself and seeing a psychologist. So far, she has stopped
the cutting, but instead she sometimes will hit herself. ''Sally'' does have a
small group of close friends. I don't believe any of her friends have aspergers,
although they go to a private high school that celebrates differences and even
then they are all on the social fringe.
Do I tell ''Sally'' now of her dx, and would that be helpful or make her feel
even more estranged. Depression is one of her traits, but she refuses any
medication since she is very creative and sees how it dulls other kids she knows
or makes them feel somehow different from themselves.
''Sally'' is very bright, a top student, and wants to study creative writing in
I'm more interested in her finding her social tribe in college, as I am sure
she'll do fine academically where ever she goes.
I really understand how you got in this situation. My foster son came to us with a morbid
fear of not being okay--he was having PTSD symptoms and felt strange all the time, and
desperately didn't want to hear that he was different from anyone else. Consequently, we
were very, very careful about how we handled neurological and psychological testing, and
only gave him as much information as we absolutely had to. At the time, I felt that some
people considered that to be keeping secrets and that it wasn't okay, but I knew my kid
and his needs and he could not handle much.
So I don't think your motives were bad at all in not telling Sally about her diagnosis.
And diagnoses are sometimes wrong, so it might have been that the diagnosis was eventually
not that relevant.
It sounds like maybe her diagnosis has become relevant, however. I think what you wrote is
very close to what you should say. ''Honey, we had you tested because of some things we
noticed, and they said you had Aspergers, and we didn't think it was useful for you to
know at the time. We never wanted you to be limited by a label. But now that you're
struggling, we think that hearing this information might be useful and might help you
understand yourself and your behaviors. This is a good thing for you to discuss with your
Try not to behave like you made some huge mistake, or were keeping some deep dark secret.
Be matter of fact. This is the truth. It is only one facet of her, something she might
find very important or not that relevant. But before and after hearing of her diagnosis,
she'll still be the same person, she'll just have more information.
sounds like it's time
I don't know about Asperger's, but I will share that for our daughter ''Marie'', we'd
suspected she had ADD, but we feared labeling her, over-diagnosing, etc....so we just
decided she was quirky and special. Until she began showing signs, as your daughter has,
of feeling bad about herself: cutting, social isolation, depression, eating disorder, etc.
We saw therapists who mostly focused on the eating disorder, but because she's bright they
never saw the ADD part.
She went off to college, and did ''find her tribe'' but still struggled. Finally we found
a really good psychiatrist who was able to take a much more comprehensive look at her, who
said that Marie's problems seemed mostly to stem from undiagnosed and untreated ADD. Marie
had already suspected the ADD issue, and for her it was a huge relief to have the
diagnosis, she no longer beat herself up so much, and understood her constant mistakes and
risk-taking in the context of the ADD. Once the ADD was acknowledged and somewhat dealt
with, the anxiety and depression were greatly reduced.
So my guess is that your very bright daughter might feel relief to know about her
Asperger's diagnosis. She's in high school, plenty old enough to understand this. And as
to the labeling, it can actually be freeing. She can learn ways to understand her
behaviors and not feel the blame/shame so much.
I hope she won't be mad at you for ''hiding'' the diagnosis, and will understand you
really meant well. You're loving parents, you wanted to protect her from feeling ''less
than'' or ''different than'', but the thing is, kids often know, or suspect, more than we
think they know, and their having only partial knowledge can be distressing. The longer
you withhold the information, the more she's likely to feel it was something terrible you
were hiding from her, and it needn't be that way.
As to how to do it, probably it's best for Sally to meet with an Asperger's specialist who
communicates well with her both about the diagnosis and about the implications for
understanding herself and the world around her. It might be time to start anew, with a
fresh evaluation rather than depending on the 5th grade evaluation, so maybe that way you
don't have to deal with the ''old news/withholding information'' problem. I don't have a
suggestion as to who to see, but hopefully someone else does. My guess is that ''Sally''
is ready to be given the tools to understand herself. ''Asperger's'' doesn't have to be a
restricting label, it could instead come with a whole lot of potential... ''oh, this is
how I am, and others are like this, and here's how others have coped and flourished.''
Best wishes to you, keep moving forward....
I have a 13 y/o boy with AS. Like your daughter, he is super bright and does well
academically. Socially, he does fine in his small school, though we've had bullying
problems in the past. He is relatively immature and not self-conscious (and a boy) so we
are still in a ''grace period'' socially. We, too, agonized over telling him. We
waited 2 years. Everything I read, particularly by people with AS, urged us to tell him.
Our boy is prone to bouts of anxiety and down moods that will likely get worse as he faces
social challenges & puberty with more self-awareness. We were worried that he would use
the label to feel ''hopeless'' or as a crutch, since learning social coping and
workarounds takes real work.
But honestly, when we told him (at 12) it was rather
anti-climactic after all that worrying. We scripted it out: how his AS helps explain the
ways he is different, how his analytical mind makes him brilliant but also rigid, why he
struggles to understand people, why he has sensory overload, wants to withdraw, finds
comfort in repetitive activities. We talked about famous people (Jefferson, Einstein,
Gates), who are believed to have AS. We gave him books to read. We tried not to sound like
it was a big deal, that it would make him understand himself better.
The response? In his
typical AS style, it didn't concern him much. I am still waiting for him to care more
about it, which I fully expect he will, in his own time. It's almost like we forgot he
had AS when we predicted his response. At this point, he does not feel bad about it, does
not label himself or use it as an excuse (I suppose that could change). He is
matter-of-fact and doesn't communicate about it. Now I can point out to him when
something is difficult for him to understand, or when he is being particularly rigid or
repetitive or brilliant, that this is typical of AS, how he can learn a work-around, how
it affects others. This has been very liberating.
I recommend reading chapter 3 of Freaks,
Geeks & AS by Luke Jackson (''To Tell or Not to Tell''!).
This book has insights into how to explain AS to your daughter in a positive way (eg;
page 21-22, we used the ''graphic equalizer'' analogy). Also, ''Look Me In the Eye'' by
John Elder Robison, who has AS, gives insight into why it is important to know, and how
much better he feels he would have coped had he only known. You know best how your
daughter is likely to react. However, in my opinion, the sooner she knows, the sooner she
can start to sort things out herself. It will explain so much for her. If she could tell
you, almost certainly she would say she wants to know. Have you looked into Orion Academy,
a HS for AS kids? It is potentially an option for easing the way and finding our
children's ''tribe.'' Good luck.
Mom of AS Boy
Our son 16 yo. wants to learn how to drive this Summer. I'm looking for an
excellent school that have extensive experience teaching special needs
kids- ie- Aspergers, ADD. Thanks
New to this
I hate to say this, but as an HFA/ Aspie, I flunked driver ed and didn't make it to
the driving test itself until age 35. Frankly, someone w severe sensory sensitivity
and overreaction to stimuli may be too sensitive to drive at this age. Please
consider whether your kid should be driving at all.
I'm enjoying having far less sensitivity to stimuli after bearing two children, and
am a longtime extremely safe driver now.
Life is hard for Aspies.
hi i am looking for help for my daughter who has aspergers syndrome
she is very shy she do not have friends in school i need help
trying look for something for her needs i have interest for the
childrens learning center in alameda,ca is it a great school for
special needs teens.
Check Communication Works in Oakland
www.cwtherapy.com, located at 4400 Keller Avenue, Suite 200 in
Oakland, California 94605
and can be reached by telephone at (510) 639.2929 and email
I wonder if you have considered a social group for your daughter. Our
son--who also has Asperger's--worked with Dr. Maria Antoniadis in a
facilitated group, which worked wonders. Beyond learning how to meet
people and how to strike up a conversation, he became much more
socially confident. Eye contact is easier. He seems not to
perseverate as much. We found this weekly group to be worth the time
and reasonable expense.
Our son will be starting high school this fall, at a small
private school in SF. He's very bright but struggles with
fitting-in and feeling different(he sees a therapist &
attends a social thinking group once a week). The local
public middle school has been tough for him socially as
kids think he's just ''weird'' and ignore him, but he has a
few close friends that are very accepting and ''get'' him
and are aware of his diagnosis.
More than anything, I want my son to feel successful in
high school, but would disclosing his dx to peers make him
more of a target or are kids more likely to be more
accepting and understanding about his challenges?
I can't help worrying.
At his age he should have a say in it. Get him the
book ''Look Me In The Eye'' (by John Robison, I think) and
talk to him about what he thinks would work. This is a
memoir by a guy who struggled his entire life and who
found some redemption in a diagnosis that happened
somewhat accidentally when he was well into his adult
life. It's also an interesting read on its own. But let
him decide what would work best for him. ANd maybe talk to
the school administrators and see if they have any
experience with this issue. At my daughter's school, there
are a few kids who clearly don't ''get it'' and I try to
raise my daughter's tolerance by raising her awareness
that some kids just think differently. My instinct would
be to let his handicap be known, because people tend to be
more tolerant to the degree that they understand that
people can't change things. REmember that all these kids
have to deal with your kid too. so a diagnosis may also
give them tools for how to deal with the inevitable
conflicts. Also getting it out there might help to
destigmatize the condition. Plus it might help him find
his true calling--there are plenty of people on the
aspergers or autism spectrum who are quite successful in
life. Probably many of them are scientists, engineers,
etc. BUt I can guess that none of them are therapists or
child-care workers. That's not their strength. THe author
of that book was very successful as a sound engineer and
now runs a high-end autobody shop. ANd he's married, has a
kid, and even managed to survive a rather unconventional
childhood (he is Augusten Burrough's half-brother---the
guy who wrote ''running with scissors'')
There was boy with this problem in my child's small pvt
school during Jr Hi years. Parents were afraid of ''stigma''
so kept it secret for first year. Problem was that kids
knew something wasn't normal, and thought he was anti-social
and he became isolated. Then (possibly on advice of
therapist) he told his classmates his problem, described
some symptoms and asked their understanding. This helped
quite a bit, and he ended up with a couple of students as
friends and more tolerance from all. My suggestion is to
get a sense of what your son's classmates are like by
watching them interact on school yard and getting to know a
couple of parents you can trust. (Some school authorities
just want to give you a rosy picture--parents are more
candid.) Small class groups in small schools can be close
knit or there can be ins and outs and snarky types who
intimidate the rest. Get therapist involved and move
cautiously, get your kid involved too, if possible. If/when
you all agree advantages outweigh risks, get school
authority's help in telling classmates in a low-key way that
calls on classmates' maturity and reminds they are all
''different'' in certain ways. History teacher in our school
(the Academy) looked out for this boy, reminded certain
other kids when he saw the need, and linked to parents.
I missed the original post, but I hope this is relevant. I am a high school
teacher that recently got a new student who clearly has symptoms of
Aspergers. She was rude, disruptive, and inappropriate, and the other
students deemed her ''weird,'' laughed at her, avoided her as much as
possible and eventually began telling her to shut up. Her outbursts caused
huge disruptions in our class.
After about two weeks I talked to the rest of the class when the new student
was not there. I explained what Aspergers is, what the behaviors are, and
gave them some strategies for interacting more positively with her. They
were SO RELIEVED! They actually interact with her more often now that they
know how to redirect her and are not afraid to be explicit about her behavior
and/or their expectations.
She still manages to be wildly inappropriate and cause giggles in the
classroom, but the other student are no longer frustrated or annoyed and the
disruptions have been totally minimized. Her classmates actually thanked me
for letting them know and have been great about attempting to integrate her
into our classroom community.
--In favor of disclosure
My 10 yr old son has very mild Aspergers syndrome, which is
mostly positive in that he is very bright, inquisitive,
polite, and reads voraciously, loves facts, games,and older
kids and adults enjoy him. But, he has a hard time with
making and keeping friends his own age who don't ''get'' him
and he doesn't always understand their social cues or when
they are being sarcastic. Where can we find other kids for
friendship who have a similar situation?
Second question: he has not been told yet about his
diagnosis as I don't know what effect it would have on his
self esteem. He already thinks that something is ''off''
because he gets teased in school and told me he feels like a
different species from the other kids. It breaks my heart to
hear that but telling him is very delicate and I'm afraid he
would stop trying to make friends if he knew.
Eager to hear from others with experience.
I also have a 10 year old boy with mild Aspergers/HFA
(whatever they call it these days!) and he sounds pretty
similar to yours, except perhaps that he is more into
science than reading, and he may be more unaware of his
differences, at least so far.
But this issue is a big one with me: When and how to discuss
his ''disability.'' He has brought it up obliquely to me at
different times. Most recently (last week), he presented it
more directly than ever: Out of the blue, he asked me if he
had ''autism, since people with autism have social skills
issues.'' (He knows he has social skills issues because he
has gone to groups in and outside of school.) I'm not sure
where he got this connection between this ''brain disorder''
as he put it and his own issues, but I'm sure it's around
his school, on the radio, etc. I really didn't know what to
say, and the moment passed.
I'd love to talk with you moreif you'd like, and possibly
have the boys meet sometime, and see if that works.
I have a 13yr old Aspie son, and I'd recommend starting a
parent support group at your school where you can meet
parents of kids with similar issues. You may try putting an
ad in the school's newsletter advertising your group. That
may lead to play dates for your son and information sharing
that would be helpful for all of you.
You may also consider a social skills group where he can
meet other like-minded peers. There's a pretty
comprehensive list at http://www.aspergersresource.org.
Hope this helps!
I would encourage you to check out Communication Works in
Oakland, www.cwtherapy.com. My six year old son has been
going there for several years for a ''social thinking''
group. It's a small group (3-4 kids) of same-age peers who
are working on the types of issues you described, and they
have groups from preschoolers to teens. Every week he
learns a social concept and practices it with his group,
and we get some instruction at the end of each session on
how to work on that concept at home. We've found it to be
very helpful; my son really likes going and is becoming
more comfortable with social situations, and we have
learned a lot of techniques for helping him. And the
therapists are absolutely wonderful; they really get my son
and have different strategies to meet the needs of each kid
in the group.
As for whether and what to tell him, that's a tough one.
I've heard from people who feel very strongly that a child
should be told of a dx as early as possible, and others who
feel that there is no need to tell anyone, including the
child. My son has a ''provisional'' diagnosis that isn't
very specific anyway, so there's not much in the way of a
label to give him even if we wanted to. I do feel the need
to explain to him why he goes to group (and other
therapies), because even though he hasn't asked, I suspect
he might be wondering. My husband and I talk with him
about how everyone has things that they're really good at,
and things that challenge them, and while he's really great
at math and reading, recess and playing with friends are
sometimes challenges for him. So, we explain, he gets some
help with those things just like some other kids get help
with math. If your son feels that he's ''different'' and
doesn't know why, it might help to talk about it. The way
you described it in your post is very positive and sounds
like a great starting point for the conversation. Good
luck -- these things are so hard and no one prepares you
Oakland mom of a lovable quirky kid
Has your son had any social skills training/classes? My son
is just 4, and is on the autistic spectrum, and I am just
starting to look into social skills groups, so I can't
comment on any particular one, but I have heard great things
about Communication Works (http://www.cwtherapy.com/) in
Oakland, as well as Quest's summer camp
(http://www.questcamps.com/). It seems like those types of
things would help your son find peers that are similar, as
well as help him develop some of those social skills that
you commented on in your post.
I am currently looking at this problem from a few years
ahead and a few years behind...My niece has Aspergers, and
my own son is will be evaluated soon. My niece is almost 20,
and has no idea. None. Life is hard for her. She doesn't
feel normal, but no one has ever addressed the issue, and
her symptoms suffer for the lack of discussion about them.
I think she would feel so much relief if she understood
herself, and other people. I'm not sure what the right age
is to do this, but looking at a young adult beginning to
face the wider world, I think it would be a gift to give
such a child.
I have a similar child and we try to be very open and
matter of fact about his particular learning issues. I'm
not sure what the positive side to withholding this type
of information really is. (Remember when we used to keep
adoption a secret from children?) I think keeping these
things a 'secret' (which it never really is) helps
continue a sense of shame. It is nice to present this (as
you have already done) as 'everyone has their particular
strengths and weaknesses and these are yours'. In my
personal experience I have never heard about any negative
effects from helping a child identify and label their
particular quirks. (Although of course this can be
emotionally painful for the parents.) I know children who
have done oral reports to the class on their own
Asperger's and at Raskob (a school for kids with learning
disabilities) students are encouraged to understand their
particular learning style and how it contributes to their
identity. I think being open and honest about these labels
helps us take away their stigma and can increase
acceptance/tolerance of our children's differences among
Our 14 yo son is heading into 9th grade in his academic private school (he's
been there since kindergarten), and we are worried. He has incredible
intellectual abilities, but has verrry slow processing speed. His grades went
from As to Cs and Ds this past year, mainly because he can't keep up with
assignments. His work is A+, but his school values getting the work in on
time, period. He won't consider going to another school at this point (we
have discussed Orion with him). He has been diagonosed with Asperger's,
OCD, ADHD (minus the H), Tourette's, depression, anxiety d/o nos, and
volitional falsetto. He has no close friends, and only a few not-so-close
friends, but he is one of the nicest guys I've ever known, and a good
companion, so I'm hopeful he'll find soulmates one day. His main sadness is
''loneliness.'' We are really struggling.
We would like to hook him up with similar kids. Are there any groups out
there for similar teens? Are we foolish to keep him in this school?
Congratulations to your son for overcoming so many
challenges and doing so well academically until this year!
His school not offering accommodations will be a problem
for high school. Orion would offer a strong social network
and a great deal of support with academics, but it is full-
time special education. And if your son is happy with his
school, perhaps there are things you can do to make it
work better for him. Do you have a handle on
organizational issues? Michelle Garcia Winner's
organizational DVD/workbook is good.
http://www.socialthinking.com/ Plus she has social skills
groups. I'm not aware of any organization that does a
better job than Orion on providing a social network for
My heart goes out to you and your son. My son, now 17, is
also high IQ, low processing speed (0.07 percentile) and
also has tended to be socially isolated and inept, though
recently he seems to be making progress on this. His
academic troubles first became noticeable in h.s. We got
him tested and found a learning specialist to help him.
I'm shocked that your son's school won't give him any
accommodation for his learning disability! What gives??
Do they have a learning specialist? Have you talked to
them about standard accommodations? My son's school (EBWS)
has bent over backwards to help him, and he's really
benefitted from it. I thought most schools were eager to
help with this kind of thing. If I were you, I'd start
making a lot of noise. Your son's getting a raw deal, in
my opinion. Write me if you want more info on how to get
My heart goes out to you. I too have a teenage son on the
autism spectrum with strong intellectual abilities, but
limited social skills. I'm sorry to say that our family
hasn't found a satisfactory solution to the problem you
pose. The social skill groups run by psychologists such as
Maria Antoniadis and Kathryn McCarthy were helpful, but not
necessarily a source of actual friends. The best I can
recommend are the groups formed around some of the special
interests these kids tend to have (e.g., school computer
clubs, trading card shops, science clubs or classes).
As for the choice of school issue, if you are fortunate
enough to have the option of an independent school, it
might make sense to find a place that will understand and
work with your student's strengths and weaknesses to bring
out his best. There are several independent high schools
in the Bay Area that might be more accomodating of your
son's processing issues. Urban School of San Francisco and
Drew both come to mind as great high schools that
reportedly do an excellent job accomodating special needs.
Orion or Springstone School in Lafayette, on the other
hand, have high schools specifically intended for spectrum
teens and thus try to go beyond just accomodation to
actually include targeted instruction on how to address and
mitigate a student's particular issues. If you do consider
switching schools, keep in mind that some of your son's
reluctance to change schools might be due to the rigidity
and resistence to change so typical of spectrum kids.
Wishing you the best,
another spectrum mom
My son also has Asperger's. He's in a program though
OUSD, the Asperger's Syndrome Inclusion Program, which
works with students thru high school. He, too, is an A
student, who has found academic challenge to be essential
to his well being. In his IEP, he has accommodations to
deal with his difficulties with organization and time
lines. He currently attends Montera Middle School and we
expect him to go on with the ASIP program to Skyline for
high school. Please feel free to email me to discuss the
Questions about Younger Children
I am trying to figure out my 6 year old son who has been
rather challenging since birth. He seems to have a lot of
signs of ADHD (hard to get him to get dressed and do basic
tasks, high energy, combative, poor impulse control
particularly re touching other people) yet at the same time
has AMAZING focus (I'd say way better than his peer group)
for the things that interest him such as drawing, being read
to, playing legos etc. So not sure if he is just really non
compliant because he is so interested in what he is doing
himself or if its more than that. He has sensory issues:
clothes drive him nuts. He doesn't have many friends but
doesn't seem to need them either - he enjoys playdates but
never asks for them - he is happy to play alone for hours.
He seems very bright but also shows very little interest in
academic learning - he has no interest in learning to read -
I'm not even sure if he knows all his letters. I am going to
get him assessed in a couple of weeks but ADHD doesn't seem
quite right and yet he is clearly not quite normal. Any
pointers as to what might be going on would be much appreciated.
Hi Concerned Mama. I can't recommend enough that you look
into getting your child evaluated for Aspergers or
High-Functioning Autism. He sounds so so so much like my
oldest boy (who has been diagnosed with High-Functioning
Autism) when he was that age. I always wish that someone
had suggested to me that I consider an Autism Spectrum
Disorder. I never would have considered it on my own for
many of the same reasons you suggest. My son is brilliant -
well above grade level in math, science, spelling,
vocabulary - and I didn't understand that a child could be
autistic and not have a learning disability. Also, my son
has always been moderately social, but has difficulty in
certain types of social situations (groups) and doesn't tend
to initiate play. I didn't understand that autistic
children have a wide range of social fuctioning. The
sensory issues would be another indicator. Also the fact
that he is very focused on topics of interest but has
trouble with everyday tasks (putting clothes on, etc...).
What you see as non compliance may actually be difficulties
with change or transitional times, or a desire to control
what he can in the environment. The one piece of the puzzle
I see missing in your description would be some kind of
stereotyped or repetitive behaviour. This might not be the
standard rocking or hand flapping that you see in the
movies. For my family, the common repetitive behaviours are
spinning, slamming their body into the sofa, swinging their
heads, walking on tiptoes, drumming fingers, muttering to
themselves, pacing... Some of these things can be less
visible as ''unusual'' behaviours, such as pacing or drumming
We too thought our son had ADHD (which he does) and tried to
get him evaluated, but the doctor just kept saying ''I think
there's something else serious going on...'' It scared us
off and we took sooo much longer to figure all of this out
as a result. I just wish someone had been brave enough to
say ''autism'' to us during that difficult time. It would
have helped us to understand him so much better. And a
couple others in the family, it turned out...
The book that lifted the fog for me was ''Hitchhiking Through
Aspergers Syndrome'' by Lise Pyles, if you're interested.
I hope that I've helped you and not scared you. I think
everyone was worried about scaring me, but I wish they'd
said something. For me, learning enough to understand him
better was a huge relief, rather than the burden I think
many people expected.
Our son, who is now 4 1/2 had very similar struggles. Since you mentioned
sensory issues, have you thought of having him evaluated by an occupational
therapist? We went to an amazing OT in Lafayette named Sheila Stosick and she
was incredibly helpful.
I really can not recommend her highly enough, the changes we have seen with
our son have been remarkable. She is very knowledgeable and can give you
techniques to help your son at home.
She can be reached at (925) 935-7356
Best of luck!
By all means, go ahead with the evaluation. No two kids are alike, including
those with ADHD. It is very common for kids with ADHD to be able to focus well
on things they are interested in (mine has obsessions that last for a year or
more). It's the things they aren't interested in that are the problem. I suspected
for a long time that there was something going on with my son, but he didn't
quite fit the descriptions I read for ADHD and was always charming in the
pediatrician's office. We finally got a good evaluation, and he definitely has it.
Now we've taken parenting classes, had him do some therapy, etc., and what a
difference it's made! It is also such a relief to have some insight into what is
going on. It's certainly possible to have ADHD along with learning disorders or
other issues, so it's definitely worth having a good evaluation done.
Happy to have some answers
I'm a parent of a child diagnosed with Asperger's Syndrome,
and when I read your post I thought that the description of
your child matches that of a child on the autism spectrum,
specifically, Asperger's (more than ADHD). Everything you
wrote about fits my child, as well. I think ADHD and ASD are
related disorders and often have similar presentations.
Sometimes when doctors aren't sure what diagnosis to give,
but want to give the child eligibility for services, they
use ''PDD-NOS'' which stands for something like Pediatric
Developmental Disorder - Not Otherwise Specified.
Sounds like Asperger's syndrome. Try Googling it and see what
Best wishes to you and your child
I live in San Francisco and am looking for tips on finding
help for my 9-year-old son. He has been identified for
SFUSD's GATE program (gifted and talented) but also shows
signs of high-functioning Asperger's -- trouble with eye
contact, often doesn't respond quickly when called, very
slow in getting tasks done, interests very limited, etc. As
a result he has no trouble understanding but is extremely
slow in getting his homework done, getting ready for school
in the morning, and other time-dependent tasks. His fine
motor skills seem to lag as well, meaning writing takes a
long time even when he is focused. Distractions are a
constant struggle. I'm looking for local resources for
occupational therapists, tutors, homework helpers, etc. Any
recommendations or advice are greatly appreciated. Thank you!
Ask your pediatrician to refer you to a developmental
pediatrician or a neuropsychologist for an evaluation. Or
ask your school district in writing to evaluate him. I have a
9-year-old who has ADD-Innattentive Type, and it sounds very
similar to what you are describing. Not hyperactive, just
always focused on internal distractions instead of the task
at hand. Could be that, could be something else, but you
really should have an evaluation and find out for sure. If
it's ADD, your son is having to work a hundred times harder
than the other kids in his class and may over time become
My 3 year old son (turned 3 at end of April 2010) was just
diagnosed as being on the autism spectrum and having very
mild Asperger's. The behavioral pediatrician who made the
diagnosis gave us a xerox of the clinical definition of both
autism spectrum disorder as well as asperger's. When I read
over the requirements to meet both autism and asperger's
disorders, it seems my son is totally borderline. Some of
his behaviors fit into some of the categories, but not
enough of the categories to meet the actual diagnosis.
We are getting a second opinion at the end of July, which
In the meantime, I'm trying not to freak out. My biggest
questions are - where does the autism spectrum start? and
anyone else out there have a similar diagnosis for their child?
It seems from what the behavioral pediatrician told us that
my child is barely autistic and he barely has asperger's. Is
that possible? So how upset should we be over all of this? I
really just don't know what to make of it. Will he be able
to grow up to have a ''normal'' life with friends and marriage
and independent living?
We're on the wait list to start him at communication works
in Oakland this fall for the coming school year, and I'm
anxious for that to start. We want to help strengthen
whatever areas he's lagging behind in, and help him overcome
whatever delays he has.
But because this diagnosis seems so ''mild'' - we aren't
telling anyone about it (beyond his preschool teachers) for
fear that he'll be viewed differently when he might
otherwise ''fit in'' just fine.
any advice people can provide would be really helpful.
Confused About Diagnosis
I've gotten most of my help and support from my yahoo
groups. I would be completely lost without them. I belong to
about 7 of them. I'm heavily into bio-medical-DAN stuff
which you might not be ready for now (or ever) so I won't
recommend specific groups.
Just go to yahoo groups and search under autism or
asperger's and join up with a bunch. After getting
receiving messages, you'll see which groups you find useful
and which you don't.
If you aren't familiar with yahoo groups (you probably are
but just in case) - when you join you choose if you want
individual messages or a daily digest - choose daily digest
otherwise you'll be overwhelmed. The other tip is to open a
new email just for your yahoo groups as your messages are
posted with your email address and although most are private
some are open to the public. Either way, in 10 years time
you may not want your child or others to be able to find any
The most important task is to identify your son's deficits
and critically review the therapy alternatives when coming
up with a game plan. The Autism spectrum is huge in terms
of how an affected person functions. Learn as much as you
can from your medical providers and from fellow parents. A
good website maintained by a local parent is
Wishing you well
I really connected with your post, as we had a similar
situation two years ago with our then-3-year-old son. We
had been dealing with what we thought was just a speech
delay, then he was diagnosed as ''borderline'' PDD-NOS. Very
confusing and scary. We did hours of research, sought out
TONS of advice from professionals, and got him as many forms
of early intervention as we could - speech therapy,
behavioral therapy, occupational therapy. This was all
through our school district, and we really had to educate
ourselves about special education law in order to receive
all the services. What we couldn't get through them, we
paid for ourselves.
Fast-forward to now: Our son still has a mild language
delay, but we recently had him evaluated by a
neuro-psychologist who completely ruled out ANY level of
autism. Maybe he never was autistic, or maybe it was all
the early intervention - we'll never know. In any case, he
is a social, happy, easy-going, smart little boy who is
about to start Kindergarten.
So I guess my advice is this: Hope for the best and prepare
for the worst. 3 is still very young for an accurate
diagnosis, in my opinion. And if it is mild autism or
Asperger's, there's every reason to believe he will lead a
''normal'' life and may just be a little quirky. Don't get
too far ahead of yourself; just worry about what he needs
right now. It will change monthly, sometimes weekly, so be
prepared to change course if necessary. Above all, trust
your instincts and don't get lost in all the what-ifs. Hang
in there, mama!
Been there, done that
Don't focus on the labels, but what his individual strengths
and challenges are and what additional support he might
The advantage of early identification is to help you
understand why some things - perhaps the way he communicates
with and responds to others - might be different than you'd
expect and allow you to get an early start helping him find
ways to manage whatever individual differences he has so
they aren't as much of a hindrance now or in the future. But
the label won't give you a snapshot of who he is as an
individual and what he specifically needs to be successful.
When you do choose to share this information - possibly with
caregivers and teachers - it's probably most helpful if you
go on to say something like, ''So it's sometimes difficult
for him to ... and we've found it helps him if we ...'' You
can also get them to share with you what they've found helpful.
You should also keep in mind that the designation will help
you get special services through your local school district
that could benefit your son. I'm not sure about your
situation, but the services can begin even before regular
school age and may also be available even if your child goes
to private school. Parents have a lot of rights in terms of
what services they taken advantage.
If the diagnosis is wrong you should certainly get a correct
one, but keep in mind that getting rid of the label won't
take away any frustrations or challenges you're son has and
may make it more difficult to get services.
So I guess there are almost two separate but overlapping
questions I would recommend you investigate - the advantages
and disadvantages of having the label associated with him,
and what are his specific needs and how would they best be
First of all, don't freak out at all! You don't say why you
sought an evaluation and diagnosis, but it sounds like
you're doing the right thing by getting some support from
communication works (for social communication skills?). My
son, now 17 has high-functioning Asperger's and we
understand it to be on the autism spectrum, which is
extremely wide (and we're all probably on it somewhere!).
Diagnoses can be helpful to get services and assistance but
they don't define a person. Just treat your son like any kid
with strengths and weaknesses and support/encourage him. You
can also simply share your concerns about his
development/skills/needs with each teacher as needed. We
tended to hold back and see how our son did each year, but
teachers told us they appreciated knowing since it helped
them figure out what he needed and how to deal with him.
Good luck with your journey and enjoy your boy!
My now almost 7 year old had a similar diagnosis when he was 3. I urge you
to contact your school district immediately and start the process to get him
into early intervention. Where he places on the spectrum is not as important
as whether you can get services for him. It is great that you have already
looked into Communication Works, we went there too, but what has been
shown to make the biggest difference in spectrum children is 25 hours a
week of intensive early intervention. Our son was placed into a preschool
program with other high-functioning children on the spectrum. He had a
great teacher, and he made huge progress almost immediately once he
Tell people as you feel ready. You are going through your own process right
now and may not be ready to share his diagnosis with others until you have
come to an acceptance of it.
Please try not to worry about the future. It is hard not to, but worrying is
unproductive. If you would like to read about someone with Asperger's who is
living a productive, independent life with friends and relationships, I
recommend ''Born on a Blue Day'' by Daniel Tammet.
Feel free to email me as you have other questions.
Whew you have a lot going on. I have a 14 year old son
and we went through a similar process with him when he was
young. You are on the right track getting his evaluation
and other opinion. At age 3 the main thing is not the
diagnosis but the information gained through the testing.
That will guide you in how to help your child.
I'm so sorry for the anxiety you're experiencing. I'd like
to recommend the blog of another East Bay mom who has
written eloquently for the past few years about having a
son 'on the spectrum'. She writes very well about the
thanks & best wishes
I just got an Asperger's diagnosis for my 3 year old, too! I'd love to chat with you
about it. I don't have a lot of advice yet, since our diagnosis is only about a
month old, but I can certainly commiserate with your stress and confusion.
My 5 year old was diagnosed with Aspergers. I'm finding it
all a bit confusing too, especially since the Asperger
diagnosis will officially be folded into the autism spectrum
disorder category (keyword being that it is a ''spectrum'' and
can look different among different kids). Our dev. ped. said
to focus less on the diagnosis and focus more on getting the
roadmap of interventions to help support them, whatever that
may be. We just started at Communication Works and really
like it. My take on sharing the diagnosis is to share it as
needed with those in a position to help get the support
services and with friends/family that ''get it.'' At least up
through kindergarten I have felt like expectations have been
so loose that my child would not have stood out as different
but I am really glad we are starting interventions now
because I can already see how the social environment changes
in the upper elementary school grades. As for the future,
try not to expend the emotional energy thinking about
something that no one can predict (especially since living
with an ASD kid requires all the energy we've got!)It sounds
like the diagnosis is pretty mild so as your son gets older,
he will develop skills and build a life that accommodates
for his strengths and weaknesses. They'll always be quirky
but quirky adults do just fine.You deserve a HUGE! pat on
the back for starting this now - I really wish I had started
I have a similar child who is much older than yours. I
know this is a hard time and that you are looking for
answers. It might help to know that you are confused
because the whole concept of what constitutes an 'autistic
spectrum disorder' is confusing and vague. You will
receive conflicting diagnoses for your child because
unfortunately we do not have a lot of research based
knowledge about autism and how it is related to
neurotypical development. There is no biological test
for 'autism' so experts make the diagnosis through
eyeballing your kid and each expert interprets the DSM
guidelines differently. Also, I know dozens of families
who have children with autism and each and every one of
those children has very different skills, assets, and
deficits. Right now autistic spectrum means so many
different things it is losing its usefulness as a term!
You should definitely get a second opinion but much more
important than the label or diagnosis, try to focus on
your child and what he needs to learn how to do to become
a well-rounded person with good social skills.
Communication Works is a great place to get services and
they will help you break what seems like an overwhelming
task into small manageable pieces.
Our oldest son got a autism diagnois a little before he
turned 3. We thought the developmental pediatrician who
gave it to us was a little bit of a quack, so we went for a
second opinion. The second guy told us that our son was
mildly on the spectrum. We had someone else see him
(preschool's doing, not ours) who said he was absolutely
fine, just smart and having trouble relating to peers
because of it.
So, he was either autistic, had mild aspergers, or fine.
But what we did know was that he did have some trouble with
social relationships so we signed him up for a social
skills class which I think helped. We'll probably do it
for a second year just to get him on even more solid
footing but if we couldn't do it, we would feel okay about
where he is. We also worked on having 1-on-1 playdates
which gave him a chance to practice his skills. We also
didn't tell anyone because we don't want him to be labelled.
As for the future, who can tell? But a friend of mine said
something about it not being surprising our son was
diagnosed since my husband had a lot of the same
characteristics. Which, it is true, he does. But he has a
very good job and had a string of girlfriends before me,
has some friends, and now he is married with 3 kids. He is
a good, sweet kind man and I wouldn't trade him for
We have two kids diagnosed with Asperger's in our family,
both 14 now. I would love to be able to chat with you, but i
am new to BPN and I'm not sure how to connect? However, I
can tell you a couple things here. The diagnoses may be
frightening, and we are always taught labeling kids may
limit them, but this is not true! Those doctors have given
you a great gift. Make sure you have the diagnoses in
writing. There are so many services available under ADA,
doors will be open that if your child does struggle in large
groups or chaotic classes later, you will be protected.
Remember this is who he is. That little miracle will have
challenges (don't we all), but he will also have strengths.
Google Tony Atwood, he's the Guru on aspergers, but there
are lots of others. BPS has paid for fantastic ''non public''
I don't have a child with Asbergers, but I grew up with my
stepbrother who has Asbergers for 15 years in the same
house. I have to say that he is one of the most brilliant
people I know, extremely kind and curious, and just
generally a nice person. He was diagnosed in junior high,
but it wasn't until high school that he began to have extra
help at school. He had a special tutor that was provided by
the school that made sure he got to all his classes during
the day. He had a hard time remembering to do basic
things, like getting up and going to school, but he scored
a perfect score on his SAT's! He is 25 now and lives with
his mom (but lived on his own for a few years). He is able
to hold a job, but can't drive because he is prone to
seizures. He is one of the most intelligent people I know
but has a hard time with common sense decisions. I would
say that he is a happy person, but he is very special also.
I wish you luck and patience, but I have to say that I am
happy that he is in my life, exactly the way he is :)
It is so confusing and scary to get those diagnosis. The
good news about a diagnosis is that it may open doors to
funded treatments if they are needed. Beyond that, try not
to freak out. He is still your same sweet little boy and
whatever challenges he has can be addressed. He is not the
diagnosis, he has loving caring parents, and he has plenty
of opportunity to deal with whatever is going on.
Communication Works is wonderful. They are effective and
professional and don't go for the dramatic just for what
works. I think you will be very happy.
I too work with kids of all ages with diagnosis and without
that have challenging behaviors that either make it hard for
them to learn or to socialize/connect or otherwise be at
ease in the world. I find that it is important to address
the child where he is and not the categorization that he has
been placed in. Underlying causes of the behaviors that you
refer to as ''borderline ASD'' can be determined and treated.
I would be delighted to talk with you about this and help
you come up with some options. One way of looking at this is
that you now have some information that you can use to find
the best way to help your son be happiest in life.
Let me know if you would like some support
A diagnosis of ASD is not a death sentence! I don't say this to be
flippant or defensive or cruel, I say it because I was once where
you are now and I now have the benefit of it being 6 years later.
I know you're freaking out, there's a lot to process here, asking
for help is a good place to start.
3 yo is awfully young to get a dx of Asperger's, IMO, but it's
simply impossible to say where the spectrum starts; who's to say
what ''normal'' is, anyway? As you know there's no predicting the
future, but you can feel better knowing that the sooner you start
services with a child on the spectrum, the better the long term
prognosis will be.
So, try to think of it not as a label but as a tool. There's
something going on with your son that prompted you to see the
pediatrician in the first place, and now you have this diagnosis
which you can use to get your son whatever services he needs;
without the diagnosis, services are harder to get. It's a sad but
true fact about ''the system.''
But now you can go to your school district and get an IEP and he
will be protected by federal law, and with that you can help him
with whatever he needs in order to live his life. You are his
Feel free to contact me directly if you have any questions or if
you want to freak out with somebody who has freaked out, herself!
I have a son (now 11) who has the same issues. He has very mild
Aspergers, diagnosed 3 years ago. Most people who meet him now
would never know. Regarding the diagnosis, you can look at it as a
blessing. It doesn't change who he has been and who he is, it
merely opens up a world of services at school, especially public
school. There must be behavioral issues or you would not have
I didn't tell him about it until last year and he was quite upset
at first but he tells people about it himself now.
When he was little he had many behavior issues which were often
stressful. Tantrums, pickiness, things had to be a certain
routine. As he gets older it gets so much better. We are
constantly blown away by how smart, funny, and aware he is. He is
an unbelievable reader and interested in just about everything and
able to entertain himself for hours.
And yes, he is finally making friends.
It is important to have perspective and to know that it gets
better. Do not sweat the small stuff, choose your battles
carefully, and make sure his teachers are not head-butters, but
understand his thought processes and what makes him tick. Who his
teachers are is extremely important, I can't stress that enough.
I'm fairly certain that we will be in the same boat as you are
when my son gets and official dx in a few months.
He's been in early intervention services and is making amazing
progress. A lot of his more worrying autism red flags seem to be
fading away a bit. I've realized that whatever the diagnoses,
he'll be ok. He's smart and sweet and will still be the wonderful
person that he is - despite whatever challenges come his way. If
you think about it, every person has his or her own challenges to
overcome. You'll be lucky, because you can read up and understand
the challenges and learning differences that your son may have and
be able to help him.
I won't be surprised at all if I'm told my son has Aspergers or is
borderline. I was researching it a few months back. (I hadn't
paid too much attention to Aspergers as my son has a speech delay
and Aspergers kids tend not to have speech delays -- although, I
believe they're reclassifying that.) Anyway, I looked up
Aspergers symptoms in adults, just to understand what challenges
adults face. It basically described my husband! I almost fell
over, but it made so much sense.
It also shed a lot of light on his father (my father-in-
law) as well. After the initial shock and head-spinning (I still
haven't mentioned it to him), it was actually a comfort. My
husband is warm, gentle and loving and a wonderful father. He has
a great job and lives a happy life. There is nothing 'wrong' with
him. I've always known that he's wired in a totally different way
than I am. I think my son is wired like his dad. As his speech
therapist told us -- autism is a difference in learning style. So
you're lucky that you'll understand how your son learns. I think
you're right not to tell people for now. We've kept it to
ourselves too. But I think it's a question I'll really struggle
with. It's a shame we can't get in touch with each other.
Perhaps through the moderator? Good luck.
Try Care Parent Network, Martinez, Ca (Louise Schneider) for
Asberger support groups or
Elizabeth Sautter, M.A., CCC
Speech Language Pathologist/Director
Speech* Language* Social Learning
4400 Keller Ave, Suite 200
Oakland, CA 94605
Education.com has a great special section on Aspergers right now.
I found some really helpful articles. Will give you some good
insight. They even have articles on 'after high school' and
reflections from people with Aspergers. Hope this helps.
-I get it
I was surprised by the responses you got, since they mostly didn't
address your doubts. A second opinion is a very smart idea, and
you may also need to be patient and see how he develops. My son,
now in college, was given a diagnosis of an autism spectrum
disorder when he was ten or eleven.
Although we accepted and worked with the diagnosis through middle
school and most of high school, it turned out to be completely
wrong. During those years, many ''experts'' believed that he had
mild Asperger's and others said he had some sort of atypical
high-functioning autism. They all leaned on the ''spectrum'' part
of the diagnosis to explain why he was so unlike the other kids
with Asperger's/HFA/NLD at school. He was not helped at all by
this incorrect diagnosis, which led to ineffective treatment,
lowered or inappropriate expectations, and a great deal of
frustration (and justifiable anger on his part). He only began to
reach his potential in a setting where some smart, experienced
people were willing to approach him with a clean slate and figure
out from scratch what works for him. Good idea to keep the
diagnosis private for now -- I can't tell you how many people out
there probably still believe my son is autistic. Hopefully you
will learn more once the speech and language people have had a
chance to work with him for a while. One thing we learned is that
science still doesn't know all that much about the brain, though
they're discovering so much all the time. There may not be a name
for whatever your child is experiencing. There's no specific
diagnostic label for our son, though the people who were
successful with him can describe in detail the types of language
processing difficulties he has (which are quite different from the
language issues associated with the autism spectrum).
There is a poetry chapbook by Rebecca Foust, Dark Card,
about a son who is on the Spectrum. It gives a lot of
insight about her feelings as a mother, as well as her son's
Our daughters are both in the second grade at the same school.
We've been friends for three years, but not close friends. Her
daughter ''E'' has been tested and is ''profoundly gifted.'' My
daughter is an average student in the same class.
E has a habit of ''checking out'' ALL OF THE TIME. Mom has
mentioned it to me and others. The child has many of the
symptoms of Asperger's Syndrome, no eye contact, social behavior
several years younger than actual age, has difficulty carrying
on a conversation, retreats after 5 minutes or so of social
contact, etc. I mentioned Asperger's casually once and Mom made
a statement similar to ''profoundly gifted children often look
like they have a problem, Asperger's, ADHD and others - it's
because people don't understand profoundly gifted kids.''
School has started and E's symptoms are more pronounced than
ever. Someone who has known E for most of her life said ''It's
like there's NO spark left. It used to be she checked out 50% of
the time, but since the end of last school year it seems as
though nothing is inside the shell any more.''
Do I say something? If so, how do I say something? Since the
girls are in private school, there are not the assessments and
the therapy available that would be given in public school free
of charge. It should be stated also that this is a single mom on
a limited income.
Want to do the Right Thing
My 3rd grader has Inattentive ADD and sounds a lot like this girl
that you think has Asperger's. He appears
to be checked out most of the time, has immature social behavior,
has difficulty carrying on a conversations.
So no, I don't think you should say anything, because you have no
training or background to make a diagnosis, and you may very
well be completly wrong. And even if you did have the background,
you would be out of line approaching the mother about it.
that you WERE a developmental pediatrician or a neuropsychologist,
the most you should do is mention your concerns to
the teacher and then leave it at that.
Mostly likely the teacher is already aware of the situation.
But I don't know any professionals
who would offer unsolicited diagnoses to people they don't know very well.
I think it is considered unprofessional.
What is particularly concerning
is that it sounds like you have already discussed E with
"Someone who has known E for most of her life". This is gossip,
you know, not concern for the girl.
You already did say something to the mother and you already got
your answer. The mom's on top of it. This girl has been
already been seen by child psychologists for testing and the
mother is already aware that her daughter's behavior may appear
inappropriate (hence her explanation to you which you seem to be
ignoring). Please think carefully about your motives before you
diagnose another's children with a vogue disease like autism.
Autism spectrum disorders are ever present in the news these
days, so many believe they are have become diagnostic
experts. 'Checking out' and 'having no spark left' are not
listed in the DSM manual as symptoms of asperger's. If the
girl is checking out and has no spark left perhaps she is having
a hard time for some reason. I really don't see how this is
any business of yours (you're sending in an email about someone
else's child who is not even a close friend?) and while you may
be sincerely conerned you do not sound that way in your email.
My name is Gita and your question caught my attention because
my brother has Autism, though he is extremely high functioning
that it borders with Auspergers. You seem like you know much
information about Auspergers, so I thought I would mention a
few things. First of all, depending on how close your
friendship is with the mother, she might be offended at first,
but if for some reason her daughter does have Auspergers, the
sooner she finds out the better. My brother wasn't officially
diagnosed until he was 17 years old and my mother had to fight
and fight to get help for him before that. My brother is very,
very intelligent, you could even call him ''gifted'' that doesn't
make the fact go away that he has a lot of social problems
dealing with people, expressing himself, etc. He was the only
person in his adult help class that graduated high school and
attended a community college. In the end, I would recommend
that you say something like, ''I don't want this to seem
offensive or have you take it the wrong way, I'm just concerned
that you might want to get ''E'' tested for Auspergers.'' It is
not an easy thing to hear or say, but the better she knows one
way or the other, the better. I hope this helps. If you have
any questions, let me know. Good luck.
I can't speak to what to suggest to your friend about her
daughter - perhaps it would be better coming from a teacher or
a member of the clergy she respects? Does your school have a
learning specialist who could talk to her? However, she should
be aware that even if you are in a private school the school
district is obligated to provide assessments (as opposed to
services and remediation).
Wow, that is a really tough question. On the one hand, you want
to help this little girl and do the right thing, on the other
hand, you don't want to encroach on another mom's parental
boundaries. Who's to say she's not right about how profoundly
gifted kids seem? (I have absolutely no clue!) A quick google
search turned up this article:
My advice would be to say something, maybe do a little research
first and be armed with an article, about how the two can look
similar, but it's still best to ''know.'' Emphasize how worried you
are, how you've noticed a change lately, and how much you want to
Even if you go to private school, she might still be eligible for
an assessment through whatever you local school district is, it
wouldn't hurt to make a call to the district's Special Ed office
just to see what they say. Good luck, this is a tough one
All children, including those in private school, are entitled to
a free public school assessment for ''all areas of suspected
disability.'' The procedure is to write the special ed director
of your public school district, and request an assessment.
However you're correct that as a private school student, she
probably would get the free public school therapy.
As for whether to tell the parent you suspect Asperger's -- No.
That suggestion should come from the teacher or school.
Although you may be correct in your suspicions, she'll hate you
for saying so. Besides, it's not like the parent hasn't heard it
before, and she's obviously not receptive.
Parent of special-needs kid
It is quite possible for a gifted child to look very different
socially from other kids. They wouldn't even need to
be ''profoundly'' gifted. But, they still may need additional
support and evaluation. Before having kids, I had worked
extensively with an autistic child and was quite aware of
autistic spectrum disorders. When by 18 mo., I saw some unusual
behaviors in my own daughter, I was concerned, but others
thought I was being hyperaware due to my knowledge of the
issues. When by 3, she continued to be very social with known
adults, but have virtually no interest in other kids or in
things most kids are drawn to, I was concerned. Her preschool
teachers were too. We had a social worker come in and observe
her in the classroom. After the evaluation, it was recommended
that a psychologist come and observe her and that she go through
some developmental testing. He said that there were definitely
social differences there and that she wasn't typical, but that
she is probably just very smart and as the psychologist
said ''quirky.'' She has since become much more social and at 7,
one would hardly notice any differences. That said, I did and
do often have to do ''social coaching'' with her to help her
engage appropriately and want to engage with other kids and I
make an effort to bring and keep other children in her life who
are also smart and ''quirky'' and that she truly enjoys and
relates to. So, this kid may not have Asperger's, but still may
need other forms of support. Two good books are Bringing Out
the Best: A Guide for Parents of Young Gifted Children and Raise
Your Child's Social IQ which discusses social coaching and areas
to coach around. The Bringing Out the Best book does a wonderful
job of pointing out both the blessings and the challenges, many
of them social and emotional, that parents need to help gifted
kids work through.
I actually assess people on the Autistic spectrum, as a job. I
can tell you that a parent will not listen if they are not
willing to. The most you can do is point out to that parent
that the child seems to be changing, withdrawing or whatever you
have noticed. If the teacher sees it also, and the parent hears
it from more then one source maybe they will act on it. There
are not a lot of services for people with Asperger's unless
parents want to pay out of pocket but there are some clinicians
who are are experts in such diagnoses. I strongly suggest not
going to just anyone but letting that person do some research
about experts in the field. They won't believe the results
unless they are really open to it. Frequently, Asperger's does
not get diagnosed until 8 years old or later since the child
usually just seems 'bright' and 'a little different'.
If it is a good friend of yours, be careful about alienating the
friendship and being too pushy. Go at that parent's pace about
hearing what is 'wrong' with her child.
Thank you to those who had generous advice about not saying
anything. The teacher did talk to ''E's'' Mom and got her a free
assessment through the School disctrict. ''E's'' Mom is
overwhelmed, yet releaved to have a diagnosis.
Interestingly enough, the School District has offered some
services as well at no charge. ''E's'' teacher was also able to
find services closer to her school in Berkeley through UC. So,
to those parents who said ''Don't Mention it again'' you were
All's Well that Ends Well
Hi, I'm looking for someone who does testing for Aspergers
Syndrome (for my 8yr. old son) who accepts medi-cal, or has
a low fee. Thank You.
Request testing through your son's school district. They will identify if he has
Asperger's based on an educational psychologist's testing, and provide him the
support he needs. Asking your pediatrician for a referral could work in the
We ended up going through the RCEB (Regional Center of the
East Bay). Service and diagnosis was free, but the wait was
significant, so get onto their radar ASAP. Their office is
in Oakland off of 66th/Zhone. Good luck!
Contact the Regional Center of the East Bay. I believe
they have free testing.
My husband and I have a strong suspicion that our 2 1/2 year
old son has Aspergers Syndrome, and both my mom and our nanny
have also had the feeling for some time now. I've contacted
the pediatrician, and he said the first step was to take our
son to a speech pathologist. Right now, I'm just feeling so
overwhelmed with sadness and guilt. I want to do what's best
for my son, but I just don't know where to start. Are there
any support groups out there? We live in Walnut Creek. I'd
appreciate hearing anyone's story of the steps they took to
diagnose their child, and the treatment/help they got. Thank
There's a wonderful Aspergers support group in Walnut Creek -
they meet the second Monday of every month at the Barnes and
Noble in downtown WC. Here's the web site:
I suggest that you contact Annette Blackman, PhD. She is a
clinical psychologist specializing in the care of children and
young adults with Asperger's Syndrome and other conditions on the
autism spectrum. She works for Contra Costa County and both
provides individual attention and counseling and runs groups. Her
contact number is (925) 323-8814.
I am so sorry you're going through this and I understand how
difficult this must be for you. :( It's important that you get
support for yourself as well as for your child. There are a lot
of resources online and I'm sure somebody will speak up with a
support group local to where you live.
I'm not an expert, just a mom of a child with autism, but I
disagree with your pediatrician. I think the first step would be
to get a diagnosis, and you can't get one from a speech
pathologist. You can call the Regional Center (rceb.org) or you
can go to a private doctor (I recommend Dr. Erica Buhrmann in
Albany (510) 540-5320). I've also heard that Dr. Brad Berman is
good (I think he's at Children's Hospital? I don't remember),
unfortunately if you go with either the Regional Center or Dr.
Berman, you'll probably get put on a long waiting list, so if you
can afford to see somebody privately, that's your best bet.
Once you get your diagnosis (and who knows, you might be wrong!)
you'll be able to make a better choice about what to do next. In
the meantime there's a lot of reading you can do online:
http://childbrain.com/pddassess.html is good, so is
http://www.autism.com/ari/atec/atec-online.htm and also some
online support groups http://autism-pdd.net/ Feel free to contact
me directly if you want, I've been there!!!!
I am so sorry. I just went through this last year (my son's eventual
PDD-NOS), so I know the pain and guilt you are going through. The good
that the earlier you can identify the problem and get help, the better
chances are. Because there is about a 3-month waiting list for everything,
pursue multiple evaluations - with a speech pathologist and a
pediatrician - simultaneously if you can swing it with your insurance.
he is 2 1/2 , call the Regional Center for an evaluation (you may want to
first). http://www.rceb.org. If he qualifies, they will provide services
until he is 3,
and then the school district takes over. Also, the Care Parent Network
www.contracostaarc.org/html/care.html) can refer you to more resources.
The best bit of advice I got was try not to think too far in the future,
concentrate on the next 6 months. Take it one step at a time, get him
and then you can look at options for treatments. Every kid seems to have a
grab-bag of symptoms and responds differently to treatments, so what is
appropriate for one child may not be be appropriate for another.
I am in Oakland, but feel free to contact me if you want to talk.
Dear Sad Mom -
I went through what you are going through about one year ago with my son
now 4. First, let me just say that the beginning of it all was the most
overwhelming for us -- it does get better. We started by having our son
by a developmental pediatrician, Erica Buhrmann (510-540-5320). She did
evaluation with him in her office, observed him in his preschool setting,
met with us to discuss her thoughts/diagnosis and give recommendations.
son's problems were primarily language- based (social or pragmatic
next saw the Speech therapists at Speech, Inc. (510) 835-2757 (they have
Oakland and San Francisco) and began speech therapy with them shortly
As we moved along, and learned more, we added more therapy (OT, an
playgroup, Floortime therapy).
If your son is under 3 he also may qualify for services through the
Regional Center -
I have no experience with them but you may be able to find more info on
listserve or just by using google for East Bay Regional Center. Once he
is 3 years
old, you should write to your local public school district and request
that your son
be evaluated for an Independent Educational Plan (IEP). The school
district will do
an assessment and if he qualifies he will begin to receive services
through the public
school as well. (As an example, although we still do private Speech and
OT, my son
also receives Speech, OT, and a part-time aide in his private preschool
There are also online parent groups that you can join and get more
about local services, support etc. If this interests you, email me
directly and I'd be
happy to have you invited to join the Bay area pre-K ASD yahoo group.
Finally, on a more emotional and happy note -- therapy DOES WORK! After a
hectic year of lots of worrying and lots of therapy, our son is doing
-- we couldn't be happier or more amazed with the changes we've seen in
Hang in there and best of luck!
I saw your post on BPN and it sounds oh so familiar..My son was
just diagnosed a couple of weeks ago after spending time on a
waiting list for assessment. The best advice I can give you is
to call the Regional Center immediately and get on their
waiting list for assessment. If your son is diagnosed before
they will provide therapy services free of charge until he is 3
at which point the school district will take over with these
I'm not sure what issues you are dealing with but it couldnt
hurt(as your ped suggested) to go to a speech pathologist as
you may be able to get a speech assessment through them,
HOWEVER I strongly recommend calling the regional center as
they will do a full assessment- which unlike a speech
assessment would be able to indicate things other than just
speech issues (occupational, speech, behavioral etc.) It wont
hurt to get speech therapy in the meantime, but since there is
a wait list to get a full assessment it would be nice to be on
that list now just in case there is something else going on and
the therapy doesnt do as much as you might of thought it would.
There are a ton of helpful websites, although until you have a
diagnosis it will be hard to know which direction to turn. I
know the feeling- I knew something was going on but until an
assessment and diagnosis there is a lot of waiting and
speculation. I would definitely be interested in meeting up
sometime, my son is close in age to yours, and we live in
Oakland. I was actually going to post something this week
looking to connect with other parents so that we could provide
support, exchange resources and form a possible playgroup. Also
my little one is awake right now but if you contact me I might
be able to suggest some websites that you might find
My information is a little old because my son is now 17, but I was very
happy that I
took him to be diagnosed by Dr. Bryna Siegel at the Dept. of Psychiatry in
is extremely knowledgeable and was very positive about his future. For
used BIA, Behavioral Intervention Association, which I believe is used by
school districts now. Their website is: http://www.bia4autism.org/
Syndrome and Autism Spectrum Disorders are not that unusual nowadays so
can probably find a support group quite easily. The Special Needs
Network, which is
a Yahoo group at http://groups.yahoo.com/group/specialneedsnetwork/ may
able to help you. Lastly, if you want to get some books, there's the
Asperger Publishing Company at http://www.asperger.net/ I am still sad
son too but I realize now he will find his place in the world. He's
always going to be
a little different but he's a smart, loving, funny guy and I am hopeful
that he will do
Dear mom, what you are going through is difficult but you will be
ok - hang in there. I run a parent support in Oakland but there
is definitely one in Walnut Creek. The organizer's name is Karra
Barber and I think if you google her name you will be able to
find contact info for Karra or her group.
An assessment by a speech/language therapist can be a good place
to start. You can contact the Regional Center and ask them to
evaluate your child. You can also set up an evaluation with a
developmental pediatrician - your regular ped can help you with
this. My son was diagnosed 5 years ago and it felt like the end
of the world but I assure you that it isn't.
best wishes and feel free to e-mail me,
I am sorry that you are so sad and grieving. First off, see the
beauty and special traits that your son has. Don't look at
what's missing but look at what is there. I would say this to
any parent regardless of the problems.
Now, to address Aspergers. I am a licensed psychologist who
diagnosis autism spectrum disorders. Typically, Aspergers is
not evident until at least 5 but usually not until 7 - 8 years
old. You don't say why you have the concern so I can't address
the specific behaviors. I suggest calling the Regional Center
of the East Bay, specifically the Early Intervention Intake unit
(they evaluate and serve children until 3 years of age). If you
have Kaiser, you can also go to them with your concerns.
Again, love your son and teach him as best you can with the
skilsl you have. THere are tons of books and websites and
support groups but I recommend books by Dr. Bryna Siegal and
Dr. Barkley (I can't remember his first name). Read before you
diagnose your child.
Good luck and hope this helps.
Call the Regional Center of the East Bay- they provide services for
children under 3 and
will get you all of the evaluations that you need. If it is determined
that you only need
speech therapy, they will find you a therapist- if you need more you will
get more. All
of this at no cost to you.
I am so sorry. I just went through this last year (my son's eventual
PDD-NOS), so I know the pain and guilt you are going through. The good
that the earlier you can identify the problem and get help, the better
chances are. Because there is about a 3-month waiting list for everything,
pursue multiple evaluations - with a speech pathologist and a
pediatrician - simultaneously if you can swing it with your insurance.
he is 2 1/2 , call the Regional Center for an evaluation (you may want to
first). http://www.rceb.org. If he qualifies, they will provide services
until he is 3,
and then the school district takes over. Also, the Care Parent Network
www.contracostaarc.org/html/care.html) can refer you to more resources.
The best bit of advice I got was try not to think too far in the future,
concentrate on the next 6 months. Take it one step at a time, get him
and then you can look at options for treatments. Every kid seems to have a
grab-bag of symptoms and responds differently to treatments, so what is
appropriate for one child may not be be appropriate for another.
I am in Oakland, but feel free to contact me if you want to talk.
Our good friends have a little boy on the Autism Spectrum. He
is 8 now and doing pretty well. We all went through the
diagnosis process together before he was 3. It can be really
difficult, but the more information you have, the better your
decisions will be. My advise is to initiate the evaluation
process because it all takes time. The speech therapist will
let you know if other evals. are recommended (e.g.,
developmental pediatrician, OT or PT) The speech therapist our
friends used was Laura Townsend. She has an office in Rockridge
now. (925) 984 6067. They found her to be a wonderful support
throughout the evaluation process and following therapy. Good
luck. I hope this helps. Josh
I highly reccomend skipping the therapist and going straight to
Children's Hospital Oakland Dept of Behavioral & Developmental
Pediatrics. My child's care is overseen by Dr Daly & she has
been exceptional. A Developmental Pediatrician, not a speech
therapist should first provide a diagnosis (not always possible
at 2.5yrs) and then direct your son's care. There is a good
chance a doc would reccomed a speech therapist but may suggest
other things as well.
The process at Children's feels long - they will mail you a
form, you fill it out & then they send you a letter & then you
can make an app't. I found it actually went pretty quickly (the
receptionist person made it sound longer) but I called in about
once a week to check progress. They take most insurance. The
number there is: 501-428-3006.
http://www.udel.edu/bkirby/asperger is a terrific website for starters.
This site has
parent forums and lists of all kinds of resourses both nationally and
locally. You can
also post on this site to find local support groups. I would guess you
should see a
developmental pediatrician (Dr. Josephine Lindt in Albany on Solano is
great) . I am a
teacher who runs a toddler program and often work with childrens who
You probably want to see a developmental pediatrician to get an
official diagnosis, if you feel you need that to move forward
with treatment. Then (or now!) GO TO www.generationrescue.org--
there you will find the information you need to move forward,
and the hope and inspiration to do so.
Hopeful for all affected children
Where to start -- make an appointment with a developmental pediatrician
or with a neuropsychologist. Children's Hospital offers this.
Contrary to what's been posted, Asperger's can be diagnosed much earlier
than age 6.
Bryna Siegal has a history of testifying for school districts and also
testified for the province of Ontario to deny children much-needed
Also, just because a company works in several school districts is not
a recommendation. Some people will have good experiences, others will
have bad. It's really a matter of who fits with your particular kid.
My experience with BIA started out well but as my kid improved the
directors became very controlling, insisting that I fire my speech
because they knew what was best.
Contra Costa County Mental Health has services that specifically
target youth with Asperger's Syndrome. The contact person for
these services is Dr. Annette Blackman.
I suspect that my 11 year old daughter might possibly have a mild form of
Does anybody know of a professional that might advise me as to testing or
I also understand CAL offers a socialization camp and would appreciate any
feedback on that.
You can see a private Developmental Pediatrician, I like Erica
Buhrmann in Albany. But if your daughter is in a public school,
you can have her evaluated by the district; contact the Special
Education department or the school psychologist. You can also try
the Regional Center (rceb.org) but I don't know the details of
their evaluations for kids that are older than 3. You can also
read the many, many websites that are out there. There's a good
test at http://childbrain.com/pddassess.html also at
https://www.autismeval.com/ari-atec/ they're not meant to be
diagnostic tools, but they can help provide you with more
information. Good luck!
I highly recommend Dorine Slocum, of Vida Behavioral Solutions in
Oakland. She's the first non-relative to really ''get'' who my son
is and what he's about. Aspergers/autism/spectrum disorders run
in my family - my son has seen his share of therapists, and he's
only 9! Consequently, he was very resistant to the idea of
meeting her; after their first hour together, he speaks as
enthusiastically about her as he does about his favorite family
members. Dorine is putting together groups of kids, and she also
works with kids one-on-one. Her number is 510-835-1272, and she's
online at www.vidabehavioralsolutions.com if that's easier for
you. She really is great!
If you suspect your daughter has Asperger's please start the assessment process now. You
can have your pediatrician refer you to a developmental/behavioral pediatrician, you can
have her assessed by your local school district and/or you can have her assessed by the
Regional Center of the East Bay (383-1200). There is a lot of support and resources out
there and many families with children with Aspergers who would probably love to share
their resources with you. You are headed in the right direction because you are asking
the right questions and getting more information. I believe a psychologist or
developmental pediatrician can make the diagnosis. good luck.
Dear Parent, my 8yr old son was diagnoses with Asperger Syndrome
4yrs ago. If your child is a public school you can request an
assesment from the school psychologist. You could also have an
evaluation by a developmental ped or neuropsychologist - these
will be expensive and have a long wait but are very
comprehensive. You might try speaking with your regular ped, if
you have not already done so. Some are helpful on these matters
and others are not. The developmental ped we see is Dr Brad
Berman 925-279-3480 and the pediactric neuropsych we see is Dr
Caroline Johnson 843-2005. I believe the camp you are interested in is run by Dr Jennifer
Selke - I don't know much about it. L
Hi - I would like to hear from anyone with experience in in our
situation. Our five year old son will begin kindergarten in the
fall at an Oakland public charter school. We suspect that he may
have Asperger's syndrome or another spectrum disorder (PDD-NOS),
and will hopefully have him evaluated at UCSF within the next
two months. He is a very smart, energetic and sometimes
emotional child with some speech delays, and has a little
trouble picking up social cues from other children. Are there
any parents who have children with Asperger's or another
disorder who's children are enrolled in public school? Are your
children on IEP's? I would really like some feedback on your
experiences in dealing with the school/teachers, as well as
feedback on how your children have been able to learn and
function in the classroom. My husband and I feel that our son
has the ability to do well, but worry how much of a struggle it
might be, more so socially. This possilbe diagnosis is a lot to
deal with, and we are learning as we go. Thank you for your
Although my son doesn't have Asperger's, he is on the
spectrum. He is highly intelligent, but he does have social
skill deficits and some processing issues. We go to a private
school in Oakland, but we do have the equivalent of an ''IEP''
which has been vital to making sure he has what he needs to
function and succeed in school. I would HIGHLY recommend that
you get one asap so you get the services you need in the public
schools. Also, because we are in a private school, we have to
pay for outside services. He is currently working with Kris
Neugebauer in Alameda on ''social pragmatics'' which is just what
it sounds like--learning social skills to get along in life,
such as conversational skills, meeting/greeting/leaving people,
reading social cues, etc. It has been enormously helpful--
perhaps there are services through the public school that
provide the same thing, but an IEP would ensure that you get
whatever is available. [Kris Neugebauer is great and you could
call her for information/advice. Phone is 510.306.9066. She
also helps write IEPs.]
Good luck. It's a process, but help is out there.
A Mom who has been there
My son has some Asperger's characteristics but did not receive
that diagnosis. My thoughts are based on our experience with
services provided by school and services we have obtained
separately. Yes, you will want him to be evaluated for an
IEP. First, does the charter school have a resource
specialist? If not, you might want to reconsider that choice
for him. Second, is the school sponsored by the Oakland
Unified School District? If so, OUSD's exceptional children
program should oversee the evaluation. Here's their link
Even if the charter school is not sponsored by OUSD, you should
contact the exceptional children program if you live in OUSD's
area. Your UC evaluation will give you the ability to request
an IEP. That request needs to be made in writing. The key to
helping children with atypical neural development is early and
continuing intervention. The school will provide some
services. You should do more if you can. You mention social
skills issues. We used Ann Martin Children's Center. The
Center for Social Thinking has been recommended as excellent.
Their link is http://www.socialthinking.com/ It won't be easy
but there are a lot of resources available now. I hope your
path with your son is always one of progress.
Insurance will pay for your child to receive services for
social skills before kindergarten. I am a speech/language
therapist in the Berkeley schools and two children on my
caseload have continued therapy with a speech theapist at Alta
Bates, and 1 attended a social group, I beleive with Children's
Hospital (not sure). The schools are required to take referrals
for preschool age children, even if they are not enrolled in
the public schools, and provide services if they qualify.
When your child attends a public school the school is required
to provide services if he is diagnosed on the spectrum or with
a nonverbal disorder. In our district the speech therapist and
full Inclusion teacher provide services. Many speech/language
therapists speacialize in Asperger's and nonverbal disorders.
The most useful training I have had (also open for parents and
on DVD)has been Michelle Garcia Winner's (speech/language
therapist) 2 day seminar, a few of her books, and Carol Gray's
social stories. I recently ordered a highly recommended book by
Dr. Tony Attwood ''Navigating the Social World'' Therapy focuses
on eye contact, body language, interacting with peers, whats
expected/not expected in different environments, taking turns,
ect. The amount of info available can be overwhelming.
The schools are great because we can access their school
environment. Make sure the therapist at your son's school has
some training. My first case for a social skills only student
was 4 years ago. Every year the numbers grow and it is now a
significant part of our caseload in Berkeley Schools. I would
definately meet with the school principal, speech therapist,
school psychologist, and district office special education
program supervisors ASAP to get the process started and get
your child on their mind, otherwise, it can take a painfully
long time to receive services.
Michelle Garcia Winner Center for Social Thinking
3550 Stevens Creek BLVD. Ste. 200
San Jose CA 95117 (408) 557-8579
She also has a website
Highly recommend you connect with Quest - they are experts and
wonderful - they have counseling, camps and after-school
programs. They are experts at teaching social cues too.
After the recent posts about Asperger's Syndrome, I am
wondering: could this child have it? Starting at age 4, she
would insist on the exact fraction for her age, e.g. ''I'm not 4
1/2; I'm 4 178/365!'' She has always been very shy and refused
to play with other children in preschool, preferring to hide
behind her mother's or other adult's leg. She prefers to read
or write stories by herself. She learned to read and write at
age 3 and has been keeping notebooks since then. She numbers
every page, and if she makes a mistake on a page or doesn't like
a drawing, she makes a big black X on the page, writes ''no page''
and renumbers all the pages.
Your description describes some compulsivity, but not the
extreme involvement in different areas that the children with
Asperger's Syndrome I have known show. If you have real
concerns, take her to a community mental health clinic for a
psychological evaluation. Sounds like she is a very sensitive,
creative, intelligent creature to me, one worthy of protecting
and helping until her sensitive nature can better tolerate this
bang-about world! My son (now 25 and married last weekend) was
also very shy at age 3, didn't want to interact much, read a lot
of books, and was extremely sensitive. I protected him and his
sensitivity, allowing him to take his time in detaching from me
when going to school (I stayed with him, despite their pleas
that I leave--it took him a few days, but he detached from
me!). Fortunately he is still sensitive and caring. We tested
him and he is very intelligent. He also is dyslexic in a few
areas. I'm glad I pampered him a bit when he was young, because
despite these challenges he has turned into a wonderful young
man who retains his sensitivity, while still being a bit
As both a clinical social worker and a mother of 3, I'd say
don't be too worried. Asperger's is very rare, and it affects
boys more often than girls. Although some of your daughter's
behavior may seem odd to you, some of it may be ''a phase,'' and
some may just be her personality. If you are truly concerned,
take her to a mental health professional for an assessment.
Make sure it's someone with experience with young children.
The answer to ''could she have Asperger's Syndrome'' is yes...or
no! Having been there, I completely understand and empathize
with a desire to get more information about a child from a group
of parents who may have experience in a particular area.
However, I'm writing because people (like me) who have never
seen the child in question have very little to base our replies
on. I think the answer is always to check out your concerns
with an appropriately trained person who can see the child and
begin to make sense- with you- of very complex issues. The best
we can all do is to take our concerns seriously (that is to say,
not be embarrassed by them) and take steps to get answers. Even
then, you may get very different ''answers'' from different
professionals. Ultimately, you have to go with the one that
makes best sense to you or which evolves over time. Best of
A friend has just been told that her daughter might have something called
Asperger's Syndrome. She wont know until she can be evaluated, and she must
wait a very long time for her first appointment to do this. Obviously, my
friend is rather stressed about this. She has been trying to learn more about
this disorder, but everything she has read (not to mention her Pediatrician's
explaination of things) always seems too clinical and difficult to really
understand. I was wondering if anybody out there has a child wtih Asperger's
Syndrome who can tell us in a parent-to-parent way just what Asperger's is,
and how it showed itself in your child? My friend thinks her daughter is just
shy, or otherwise awkward around other kids. How can you tell regular shy
behavior from Asperger's? When did YOU know something was different about
I appreciate your friend's concern. But to relieve her anxiety,
at least for the time being, you might let her know Asperger's
is not commonly diagnosed in girls, and it is certainly
possible that whoever referred her for the full evaluation is
off the mark. As a child psychologist, I have worked with a
number of kids who were given preliminary diagnoses (e.g., by
pediatricians) that turned out to not be appropriate. Her
daughter may still need some help with social skills or
language use, but I hope she doesn't worry too much about the
particular diagnosis until the evaluation. In the meantime, if
she wants more information, there is a lot on the web. One
website she might start with is:
as the mother of a 6 year old asperger girl -I know the
experience of feeling that your world is over. that all of the
dreams you had for your child would need to be revised. We went
through the initial shock, experienced our grief and got on with
helping our child get the most out of her existence. tell your
friend she must first realize that Austism/Aspergers is a
spectrum disorder. two kids with the same diagnosis might have
totally different symptoms. our child's voice is not monotone
and she does not have ''eye contact'' issues but does have social
deficiencies. She currently get's two days a week at Stanford
and is making great progress. Get ready to shell out some cash
for the services required as most insurance companies will not
pay. If you are 89, have a stroke and need speach therapy -
insurance will pay but.... if you are 6 and need speach they say
it is a developmental thing and until it effects accademics they
are not required to cover anything. Ultimately her lack of
social skills will effect her academically - we will revisit the
insurance issue at that time.
please note there are a lot of new therapies including a system
called RDI and we have found out through an alergist that she is
allergic to mold, citric acid and eggs. when ingested we notice
obvious behavioir issues. so keep that in mind. your friend
might want to have her child tested for allergies.
Please tell your friend that the child she loves still exists,
nothing will change that feeling.
we adore our AS girl and would not change one cell of her even
with her quirks. I look at it like this. getting this
diagnosis has given us an explanatiion and plan for her
behavior. this is not something that she will die from but live
with. and i can live with that
i will happy to talk to you or your friend - anytime as i know
upon first learning about AS - we, as a family were devasted but
now we see the light and it is a 6 year old named Claire who
lives in our house!!
mom of a wonderful and inspiring Aspergers child.
When our son was diagnosed with PDD-n.o.s. (Pervasive
developmental Disorder- not otherwise specified) which is an
autistic spectrum disorder that shares some of the traits of
autism and Asperger's, we found an enormous amount of information
on the internet; just do a Google search on Asperger's. In the
course of things we also have found a number of good books on
this and related subjects. One is ''Asperger Syndrome & Your
Child: A Parent's Guide'' by Michael Powers and Janet Poland (ISBN
0-06-620943-9). Since the line between Asperger's and PDD is
very fuzzy, I will also recommend another book, (Pervasive
Developmental Disorders: Finding a Diagnosis and Getting Help) by
Mitzi Waltz (ISBN 1-56592-530-0). Regarding your question about
the difference between shyness and Asperger's, the impression
that I have from all of the sources (books, internet, & Psych
professionals)is that there is a spectrum from normal to advanced
forms of all of these neuropyschological disorders. Some shyness
is truly just shyness inother cases it has a neurological
component and is an expression of Asperger's or other condition.
If your friend has health care through Kaiser, I recommend the
child psychiatry group at Oakland. They have some wonderful
professionals there who will also help with getting appropriate
educational assistance for the child.
Asperger's is characterized by flat, monotone affect, limited (or
none) ability to read social cues, attaching to adults more
readily than peers, often obsessional interest in a particular
area--e.g. butterflies, trains, limited eye contact, math/science
giftedness, largely; more occurent in boys. There are wonderful
social skills groups available that work with kids/adults with
Asperger's. There is a boy in my daughter's grade with
Asperger's who has made vast strides socially since he has joined
a social skills group.
I wish your friend and daughter good luck.
Seen a lot of it
What I would take from the pediatrician's referral, at this
point, is that there are reasons to be concerned about the
child's development and that it is important to obtain a
thorough assessement. The pediatrician may or may not
be correct about the specific diagnosis that was suggested.
There are so many subtleties and the state of the art is
changing so rapidly, that pediatricians, psychologists, and
teachers can easily guess wrong. The wait for an
evaluation can be very long, but it will be worth it in the end.
Our child has a diagnosis of PDD-NOS (pervasive
developmental disorder-not otherwise specified) and has a
lot in common with children with Asperger's and another
syndrome, NLD. Here are two books that explain things in
the parent-to-parent way you mentioned. Both are
first-person accounts by a parent; they describe the
situations leading to their child's diagnosis and how they
used the diagnosis to support the child's development.
Rondalyn Varney Whitney, who wrote Bridging the Gap:
Raising a Child with a Nonverbal Learning Disorder (ISBN
0399527559), is an occupational therapist who writes from
both a personal and professional perspective. The other
book is by Echo Fling, Eating an Artichoke: A Mother's
Perspective on Asperger Syndrome (ISBN 1853027111).
One book about social skills is Helping the Child Who
Doesn't Fit in by Stephen Nowicki and Marshall P. Duke
(ISBN 1561450251). It's clear and practical, not too clinical.
My advice is to continue to talking to different people with
different expertise. My 10 year old has had a couple of
''diagnoses'' including ODD, ADD, possible lead-poisoning,
etc. Each time we got a new one, we were relieved that
there was a ''thing'' to work on and we felt like better parents.
But what I have found over a 6 year journey is that I
concentrate less on the ''diagnosis'' and more on helping
my daughter with social skills and helping her in finding
those things at which she excels. She is becoming more
and more excited about life and about becoming a young
woman who ''doesn't fit in any one box''.
Our wonderful 8-yr-old son has Asperger's syndrome, and after
about three years of assessments and treatment attempts, we have
found a way to really help him that is working. I would be glad
to offer you info: about reading, local professionals, and/or
about the approach we're using. There's alot of misguided info
out there - I guess you have to pick and choose what feels the
most grounded and relevant to your child yourself.
First of all, Tony Attwood has written a pretty clear
description of Asperger's, called Asperger's Syndrome.
If you can't get it through the usual channels, let me know and
I'll give you ordering info.
Besides that, you (and others) are welcome to e-mail me about
particular questions you have. This is scary stuff, but there is
REAL HOPE, REAL POSSIBILITIES for these kids to get help and to
develop further and live fuller lives.
After seeing a lot of discussion about Asperger's challenges, we
are pleased to announce our plans to open The Keystone School, a
middle school designed to focus on the academic and social
learning styles of those diagnosed with neurocognitive disorders
such as Asperger's and Non-Verbal Learning Disability. We have
begun work in anticipation of opening in Fall 2003. If you know
of anyone who would be interested in attending The Keystone
School or learning more about it, please contact us at
(510) 466-5405. there will
be an OPEN HOUSE for parents and professionals on Thursday, Feb.
I am just finishing a book called ''A Mind at a Time'' by Mel
Levine, M.D. He is a pediatrician specializing in
neurodevelopment of children. He descibes his view of the
various systems, inputs, outputs, etc. involved in the
neurodevelopment of children. He does not like to 'lump'
developmental problems into diagnoses, but, rather is a
'splitter'. He divides the mind into eight systems, including
social; each system has multiple divisions; etc. It's written
for parents and emphasizes each child's uniqueness. I have
found it helpful and think you, and most parents, would too.
3-year-old's "patterning" behavior -- Asperger's?
My sister's oldest child, who will be four in April, has been
exhibiting "patterning" behavior, or repetitive activities, since she
was a toddler. In her case, this has included flapping her arms
vigorously, running back and forth, or getting stuck on a thought that
she won't drop. The running and flapping usually occurs when when she
is excited, switching to a new activity or relating a story or
singing. She is a bright child, ahead of her peers in language and
number skills, and she has a good sense of humor. Over the years, they
have consulted with their pediatrician, who has taken a "wait and see"
approach, at least until her language skills are more developed (age
4? age 5?). However, my sister's mother-in-law, who teaches at a
school where they are tuned in to developmental problems, does not
agree with the doctor, and has been sending my sister information on
Asperger's Syndrome, which apparently is something like a mild form of
autism. Also, my sister says more and more adults are commenting on
the behavior, including her daughter's pre-school teacher, who says
that at age three the children are pretty oblivious to what might
be considered odd behavior in other children, but by age 4 they start
noticing. My sister is worried about what effect this will have on
their daughter. To date, they have tried not to make an issue of
the flapping, etc., because they don't want to complicate things for
their daughter by making her self-conscious.
Has anyone had experience with this? Advice?
I would urge your sister strongly to have her child evaluated by a good
child psychologist. Early diagnosis and treatment is tremendously
important to a child with neurological, psychiatric or psychological
problems. I wouldn't dream of 'diagnosing' from this distance, even if I
were competent to do so. But my personal experience with such problems
leads me to encourage your sister to be aggressive in pursuing an
evaluation. The secondary effects of an untreated disablity or other
problem can be very damaging to the child and to the family, sometimes even
more so than the primary problem. (Two good, short and very readable books
on this are "The Social Side of Learning Disabilities" and "Learning
Disabilities, A Family Affair", both by Betty Osman.)
The point I want to stress is that a parent really is in a better position
to sense that a problem *may* exist than anyone else. We can't diagnose our
children but we spend so much time with them that we have a much fuller
picture of their behavior than any professional can hope to have. Thus, a
parent's persistent feeling that there may be a problem, or that their child
is "off" somehow, should be taken seriously. Parents who are concerned
about behaviors like you describe should have their child checked out,
especially when the issue or behavior has persisted for a year or more and
they are getting the kind of feedbackfrom others that you describe.
I also want to caution against the impulse to defer to the pediatrician who
says "wait and see later." There are a few pediatricians who specialize in
neuropsychiatric evaluation and the like, but by and large this is simply
not a part of the mainstream pediatrician's active skill-set. I would not
refrain from pursuing a concern on the basis of a pediatrician's wait and
see advice, although I would take very seriously a positive recommendation
for further testing from that source.
Last, I want to emphasize that the decision to get an evaluation is not a
big deal. Competently handled it will not trouble the child or make her
self-conscious. While I wouldn't embark on (or advocate) a course of
*treatment* without a professional recommendation that I trusted, some
parental aggressiveness about testing and diagnosis is not a bad thing. We
have to be advocates for our little children. The worst that happens is
your sister would pay for an hour or two of a psychologist's time and then
be able to rest easy whatever the resulting advice.
Evaluation & Diagnosis
My son needs to have an updated psychological assessment done for his Asperger's and
AdHD diagnoses. The last one was done when he was 8; he is now 20 and are considering
applying for SSI based on feedback from his current speech therapist and others.
Recommended neuropsychologists have fees of upwards of $5,000, which is too much for me.
When it was done for him at age 8, it was by a psychologist with special training and
interest in Asperger's (but in the city in OH from which we moved). It seems there
should be a similar middle-of-the-road solution here. Other recommendations are for
Regional Center or other non-profit to do the assessment, but it seems to me that given
the declination of services rate from some of these organizations, that would not be the
best solution. Thanks.
I recommend you speak with Dr. Kristin Gross, PhD in Berkeley on Solano Ave.
East Bay Mom
Here are some resources you could explore.
- UC Psychology Clinic: (510) 642-2055,
http://psychology.berkeley.edu/clinic/psychology-clinic. Sliding scale assessments;
waits can be long.
- Wright Institute Assessment Center, 510-841-9230, x159, Sumana Kaipa,
Co-Director. Sliding scale assessments.
- Clearwater Counseling & Assessment, 510.596.8137, sliding scale available.
- Mary Cunningham at Raskob Learning Institute (510) 436-1275.
A day in Davis:
- Dr. Jennifer Grimes, Davis, CA. Significantly lower cost assessments, as she
conducts them in one day in Davis. 530.758.3114, 707.435.01467,
Hi, I believe my son has Asperger's Syndrome, but he has never been
diagnosed. Does anyone know what kind of doctor
does testing for Asperger's Syndrome?
If you suspect your son has Asperger's, I recommend a
comprehensive assessment by a neuropsychologist. Christine
Duis, PhD at 925-256-4400 and Caroline Johnson, PhD at
510-843-2005 are both neuropsychologist and highly respected
in the field.
Our family has recently changed our medical coverage to Kaiser,
Oakland, and we are looking for someone there--a psychiatrist,
developmental pediatrician, or other, to evaluate our 10 year
old son for Asperger's syndrome, and hopefully, to begin a
treatment plan. He has many of the classic symptoms and we're
hoping an evaluation will start him on the help he needs.
My son was diagnosed by Dr. Russell Rieff at SF Kaiser, but
that was 11 years ago and their procedure may be different
now. Also, unless things have changed, Kaiser will diagnose
but not provide a treatment plan. If you plan to receive
special education services through your school district, they
may require an evaluation by their own staff.
You might try one of the neurologists such as Dr. Jean Hayward or
pediatrician Dr. Mangravite. Both out of Oakland. However, I would
referring to the Regional Center of the East Bay. 383-1200 and ask to
child assessed. Regional Center provides services for the
population. They can assess him and it is no cost to you. However,
period does take awhile. Children's Hospital can also diagnose. Try
Dr. Watchel or
any of the other developmental pediatricians. Good luck. (PS: My
preference would be to
go to a private developmental pediatrician or Regional Center). Go to
Center Website - rceb.org for more information about their services
I would recommend checking out Autism Treatment Center of America
and the Son-Rise program, regardless of what pediatrician you
choose. ABA is the therapy of choice lately, but its effects (in
my opinion) aren't often maintained for very long, and the
program can be abrasive. Son-Rise, on the other hand, is
completely catered to your child's needs, and incorporates the
parents as the child's most important resources. Best of luck.
- Seen Son-Rise work!
I've read the previous recommendations on the website, but they
are several years old and we're hoping for an update. We're
looking for a really excellent neuropsychologist to do testing
for possible Asperger's in our 4 y.o. Prefer Contra Costa but
will go as far as SF. Hoping to find someone who gives
concrete and constructive ideas for assisting the child and
family with coping and maximizing quality of life. Preferably
someone gentle and good with small children. Thanks in advance.
M. Alex Peterson at Children's Hospital has a great reputation.
We used Clare Ames-Klein in Lafayette and found her very
thorough and helpful. My daughter looked forward to her visits
with her which was great.
I recommend the Children's Hospital Oakland Neuropsych Assessment
Service, where my son was tested (another diagnosis).
Kristin Gross did the eval and was excellent.
I also know the work of Alex Peterson and Corina Grandison,
and would recommend them highly as well.
Treatment & Resources
My four year old child was recently diagnosed with Asperger
Syndrome. He currently receives weekly one on one sessions
with a child therapist as well as weekly structured play
sessions. We are considering additional speech and OT therapy.
I heard that intense ABA therapy works well for moderate to
severely autistic children. However I want to hear from
parents and professional who works with high
How beneficial is ABA therapy for improving social skills in
If it is beneficial, what's the typical number of hours per
week of therapy to really make an impact? (I've heard of
moderately autistic kids receiving 25-40 hours/week). I know
every child is different as is mine. Would really appreciate
your honest feedback. Thank you.
ABA can be a tricky thing with a child who is mildly on the
spectrum because it can be very rigid and repetitive.
However, ABA is not your only option and there are several
other methods that would put more emphasis on social skills.
(Floortime is the only one I can think of right now).
Whichever way you go, though, the success of the program is
going to depend on the skills of the service provider. You
can learn to do it yourself or you can hire an agency to do
it for you. My son has high functioning autism, not
Aspergers, and we used BIA (www.bia4autism.org) They are
ABA-based but are very flexible with their approach; they
called it ''the whatever works method,'' and the flexibility
of their program was hugely successful for my child. Our
program started when my son was 3 1/2 and ended 2 years
later when he started Kindergarten. It was 15 hours/week and
there was never a break; no vacations, no days off more than
one or two in a row. He was almost completely nonverbal when
they started and the results were instantaneous. Hope that
helps! Feel free to contact me directly if you'd like more info.
Instead of ABA, I would look at RDI (Relationship
Development Intervention), which mirrors typical child
development. You can get more info at RdiConnect.com
Are you under the care of a developmental pediatrician or a
psychologist who can give you guidance based on your child's
individual needs? It's good to have a ''big picture'' health
provider who can point you in the right direction. I'm
planning on taking my son to Susan Johnson, a developmental
ped in Colfax (youandyourchildshealth.org). We currently
see a well-respected developmental ped, but I need a new
Hope this helps!
Does anyone have good resources for a 5 year old child with
Asperger's Syndrome? After difficult baby, toddler and
pre-school years, we finally have found out the reason our
son doesn't respond to regular parenting strategies like
other kids do. We've gotten a couple of great books but are
looking for more books about parenting strategies and
general approaches we can take with a 5 year old. We also
are looking for resources about how to balance the attention
and care we give with raising our two younger children.
Lastly, in your experience, are AS kids usually the product
of an AS parent?
My son has an Asperger's diagnosis. I have found social/pragmatic language
classes (i.e. social skills classes/play groups) extremely helpful. We started
when he was five and was not interacting much with other kids, and it made a
huge difference. Two really good places are Communication Works http://www.cwtherapy.com/ in Oakland near
Keller Ave, and Speech
Pathology Group is another http://www.speechpathologygroup.com/ - they
have one location in Berkeley at Ashby and Telegraph and another out in
Walnut Creek. (Although they call these language groups, my son does not
have any language or speech deficit - social language refers to both the
spoken and the unspoken language of social interaction. I should note as
well that these are pretty expensive.) We have recently been looking into
therapists for our son as well to deal with anxiety type issues. I've learned
that the therapists who work with Asperger's kids do a lot of coaching with
the parents as well - some of them even focus more on the parent coaching
side than the kids. Two names are Peter August (510) 220-5152 and Ellen
Singer 525-1975. Ellen's focus is very much on parent coaching - my
impression is that she has what you might call a behaviorist approach.
Peter's focus seems to be on understanding the underlying causes of the
behaviors. These impressions are based on interviews with them but not
having worked with them yet. There is an Asperger's parents support group
as well that meets monthly at Communication Works; much of the discussion
there is centered around getting services from the public schools .
Best wishes to you.
We have a 13 yr old Asperger's son who was diagnosed at 5.
We relied heavily on the advise of the medical professionals
we worked with (developmental pediatrician, speech
pathologist, psychologist) to guide us in our parenting.
It's also really important to connect with parents of kids
on the Autism spectrum. There are various support groups
and resources at http://www.aspergersresource.org.
In our case, there's a definite genetic propensity for
Autism. My dad and his siblings are all undiagnosed but
very much on the Autism spectrum. Luckily, most of them
developed the skills they needed to be happy and productive.
Hope this helps!
Parent of an Aspie son
My highschooler has Asperger's and is in need of therapy
(finally agreed to go) as well as educational
therapy/help. Linda Lawton and Anastasia Kim were
recommended in past posts but I can not locate either one.
I would greatly appreciate any recommendations for
therapists. Thank you all...
Anastasia Kim is on the faculty at the Wright Institute in
Berkeley. I believe she also worked at the Orion Academy in
Orinda, which serves kids with Aspergers' and autistic
spectrum disorders. I am not sure if she does therapy.
Anastasia Kim can be reached through the Wright Institute in Berkeley at
510.841.9230 x 139, M-F, 9-5. Her specialization is working with children with
Asperger's and she is currently available for new clients.
Good luck with your search.
Contact Communication Works -- 510-639-2929. We had a
great experience in a group for our teen.
Recommending Communication Works
Try checking out Nancy Chin at
www.stepbystep4success.com. She tutors students needing
Try Communication Works in Oakland.
Their website is www.cwtherapy.com
My teenage daughter went there for social groups, which
were wonderful, and they also were able to recommend
counselors to work with her seperately.
For your teen, I highly recommend Communication Works
Speech & Language Pathologists (cwtherapy.com). My HFA teen
was reluctant at first, too..his uncertainty was eased by
CW professionals' sensitive manner and expertise. They
have comprehensive understanding & experience w/serving
spectrum youth. My son attends a small group/dyad at CW
& is making strides-in confidence & communication-thanks
to their resourcefulness. Good luck!
Someone I love dearly has a child who has an Asperger's Syndrome diagnosis. The
boy is extremely high-functioning and characterized as a ''prodigy, a genius''
in the medical and scholastic literature on him (I know, I've seen it).
But he is suffering and has serious social skills issues despite having worked
with a local therapist over time.
Looking for someone who is an expert in the field of Asperger's Syndrome,
preferably in Berkeley or nearby.
Thanks for assistance.
I would highly recommend Dr. Annette Blackman, a psychologist who
works with children and young adults on the autism spectrum,
especially those with Asperger's Syndrome. She is excellent!
You or your friend should give Nancy Chin at Step By Step a call.
Nancy has extensive experience working with gifted children with
learning disabilities, especially those on the autistic spectrum.
Her contact # is 510-384-1909.
Can anyone recommend a therapist or psychiatrist in the
Berkeley area who is skilled in talk therapy for an older
teen with Asperger's or Asperger-like challenges?
I have just stumbled upon the probable Aspergers diagnosis for my 19
year old. I too am trying to find any local resources- support groups for
families, programs for young adults. Please let me know if you have any leads. I
will also be happy to share a possible solid lead re therapists. Please email me.
Thank you and best wishes.
I recommend that you contact Dr. Fortunee Kayra-Stuart as
a possible therapist for your teen age son who has
Asperger's. She is highly experienced with working with
teens on the autistic spectrum, and formerly served as
chief psychologist at Children's Hospital. She can be
reached at 510.526.9506
Kathy Sinsheimer, MFT
Anatasia Kim is an outstanding psychotherapist who has
worked with many young people with Aspergers. She worked
at the Orion Academy with students. She now has a
practice at the Wright Institute in Berkeley. My son has
had real success in working with Dr. Kim.
My 5 year old son who is a kindergartener in the Oakland School
District just got diagnosed with Asperger's Disorder.
The pscyhologist explained that the school is required by law
to provide an aide, ''pragmatic speech'' through the speech
therapy dept, ''group social skills group'' and occupational
therapy. Has anyone else there been through the process of
getting these resources for their Asperger's child in the
Oakland school district??? Help! Thanks in advance!
I suggest you join the Special Needs Network at Yahoo groups:
http://groups.yahoo.com/group/specialneedsnetwork/ They have members who are
dealing with these issues and can offer you support and advice. I don't have any
information about the Oakland School District, but I can tell you that my 16-year old
with Asperger's is now full-time at Alameda High and doing very well. We will be
visiting 4-year colleges very soon and planning his future education.
The school district is not required to specifically give your child things like ''pragmatic
speech'' or an aide. They are required to provide your child with a free and appropriate
education in the least restrictive environment, according to the IDEA. What that looks like
is determined differently for each child. If you haven't done so already, the first thing
you need to do is have your child assessed by the school district--they are required to do
this free of charge. I'd make sure you get a psych eval, a sensory integration evaluation
from an occupational therapist, a speech eval and an educational eval so you have a full
picture. Once that's done, if the district agrees with the diagnosis, you will get an
IEP--an Individualized Education Plan, that will be the contract that guides what services
and accomodations your child gets in public school. Children with Aspergers usually do need
pragmatic speech and/or social skills, but the district may not offer them-- you may have to
ask for them and argue for them. Same goes for all other services--most children on the
autistic spectrum have sensory issues and need occupational therapy, but again, the district
may or may not offer it. Remember, they are trying to keep their costs down, so they're not
going to leap to offer you services. You need to educate yourself about your child's needs
and then ask for what you think he needs. In this sense, it is helpful to have a private
psychologist to work with, someone who doesn't have a vested interest in keeping services to
a minimum, to help guide you about services. There are a number of websites that can help
you too--one of the best is tacanow.org. TACA is Talk About Curing Autism and has any number
of resources for navigating the world you've entered. It is particularly focused in
California. Finally, getting an aide is one of the hardest things to accomplish in public
school, so I wouldn't count on it. And, speaking from experience, I can tell you that there
are just as many cons to an aide as pros. If your child can function without one it is
really better not to have one. At any rate, you have much to figure out and learn, but I
promise you that there are many other parents out there ready to help you, and children with
Aspergers are challenging and frustrating, and also an amazing blessing.
We are looking for a therapist for our 11 year old son. He would like to see a man if possible, but is also open to seeing a woman. Would like someone warm and caring and insightful, who is familiar with Asperger's-like qualities and issues (social issues, anxiety, trouble with transition). Is anyone familiar with Dr. Richard Bloom, Jonathan Gross, John Sprinson? Thanks! Any referrals are greatly appreciated
We had a child see John Sprinson for testing and evaluation and for
play therapy. He is warm, thoughtful, honest, and always calm and
respectful. However, I cannot recommend his strongly psychodynamic
approach for a child with Asperger-like issues. His initial
evaluation missed the mark. While it presents the same raw data that
later led a neuropsychologist to a helpful and accurate autism
spectrum diagnosis, Dr. Sprinson interpreted the child's deficits in
social understanding and expressive language as an emotionally-based
''reluctance'' to engage with others. We have a child with issues
about clothing and food that improved later when we learned about
sensory integration, but Dr. Sprinson saw control issues and power
struggles and mostly wanted to know how my partner and I reacted when
our child refused to eat. Other behaviors, which he saw rooted in
control issues, were not effectively addressed in therapy with him ,
but they improved later after we understood them as a reaction to
anxiety. I know nothing about the other therapists you mentioned --
good luck with your search
I can highly recommend John Sprinson. He is very caring and pleasant
and very smart. I believe he does see many kids with the kind of
issues you describe. He is very down-to-earth, doesn't engage in a lot
of psycho-babble, and reallly saw our child as an individual, with
strengths and challenges, and not just as a ''diagnosis.'' He's been
doing this forever, and I felt him to be a really wonderful calming
presence for our child, and for my husband and me
Questions about Adults
My husband's behavior seems to be explained by AS. He's not diagnosed not likely
interested in a diagnosis-which he thinks is a way to point him out as ''flawed.'' But
I need coping strategies if not marital counseling. I don't think I can push for a
diagnosis, but could back him into it gently with the right professional.
He doesn't outwardly appear unusual, and his case may be mild, but I've been reading
up on AS, finding him well-described in most of the books, and my reactions well
described. He's not too physically awkward, but avoids eye contact, admits a lack of
empathy (w/no interest in it, even in my or our child's issues). Other haracteristics
that fit include tantrums if his plans can't work out his way, stilted or lack of
communications, rigid thinking, and huge aversion to change, conversation, and
anything w emotional contact or communication. I've been lonely forever. I'm trying to
make the best of the bright side (e.g., emotion-free tasks don't usually bother him,
and I can make plans w/ our child w/o him since he doens't feel like he's missing out
w/o us). But I suffer a lack of intimacy & emotional connection-which may be a
permanent-which also affects our sex life. I'm on my own when I'm down or ill. I can't
talk to him about anything w/ emotional content. It's not much of a relationship left.
We do have fun together sometimes, but I cannot make any progress on intimacy or
emotional understanding. His view is that he's made all the changes, and he doesn't
perceive me as suffering so much as demanding. Which leaves a void of nothing between
us--from my perspective, anyway. I'm pretty sure he just sees me as this
roller-coaster of confusing emotions and demands, and he can't understand why I want
him to respond to questions and statements (''Was a response required?'' is a response
I can barely stand to hear anymore). When he is particularly self-absorbed and I get
aggravated, the only solution for me now is to void him my mind until I can let it go.
Meanwhile, he doesn't think he is callous, and the lack of family feeling means
nothing to him (although any attempt at change or conversation is viewed as
criticism). He may see me as cold for the few days it takes me to recover. But each
incident erodes my hope. It's also not as simple as just leaving him. Not best for our
child (who equally adores & detests him)& not necessarily best for me. I want to be
compassionate and careful about my options, but clear-sighted. Unfortunately,
communications and emotional connection are fundamental to me. Divorce is not an
immediate option (I would prefer not to go that route at any rate). Anybdody in a
Asperger's Syndrome is a subject I know something about:
Our 24-year old son, a senior at CSU East Bay and an
amazing success in life, is ''on the autism spectrum''.
He attended Orion Academy, a college-prep high school
for A.S. youth, where I came to know dozens of fine
young people with diagnoses of Asperger's, NLD,
PDD-NOS, and other categories.
Rumor has it that the doctors who are re-writing
the DSM-V will be throwing out all those sub-
categories and just calling it ''autism''. If this is
the case, the unintended consequences will cause
havoc in the health insurance and public benefits
sectors for years to come.
Based on your description of your husband, I
very seriously doubt that he could be diagnosed
with Asperger's Syndrome. He's just too highly
That said, there is a very broad spectrum of
normal / neurotypical people who have some
Aspie traits. I, myself, when confronted with
drama queen - type people, react by channeling
Mr. Spock from Star Trek. It never fails to drive
them up the wall!
Your husband sounds like a member in good
standing of the Silicon Valley crowd of engineers
(Full disclosure -- my degree is electrical
1. Appreciate the good aspects of Aspie-like guys.
They are usually loyal and reliable. A female
co-worker of my husband had a crush on him
and was coming on to him for years, and he
never had a clue!
2. Train your husband to do the things you need
to feel loved and appreciated. Give him a short
list. Yes - putting it in writing may help him
absorb the information. For example:
a) ''When you come home from work, it will
make me very happy if you will give me a good
hug and kiss.''
b) ''I expect you to give me a present on my
birthday and Mothers' Day. If you don't, I
will be upset.''
One of the earliest and best guidebooks for
parents of NLD children is titled;
_I Shouldn't Have to Tell You That!_
People on the spectrum genuinely don't know
what society expects from them.
You have to tell them with the ''heart of
a teacher''. They often
will appreciate being clued in, if it is done with
kindness. Snarkiness will defeat your
Finally, there is an online Asperger's test:
Amelia, not really Ms. Spock
The interpersonal dynamic you are describing is exactly the one I have with my
child's father. (And, as far as I've been able to ascertain, the dynamic he has had
with his other partners as well.) Important exceptions to the overall similarity
(which nonetheless highlight the parallels between his general personality and your
husband's) are that my child's father has not bonded with our young child at all,
despite having numerous opportunities to do so, and despite the fact that he has
maintained a (consistent, though non-conventional) relationship with me. He is not
at all antagonistic or cruel to our child; just utterly disinterested and
indifferent. I've known this man for over ten years and been in a relationship with
him for five, so I've known him long enough, and through enough life changes, to be
sure that this is just how he's ''wired,'' and that his behaviors are not specific
to his interactions with me. One concept you might want to look into, and which I
feel fits my child's father better than an AS or other autism spectrum diagnosis
(though I still debate myself about this, and of course he is not interested in
seeing a psych professional), is Schizoid Personality Disorder (DSM IV definition)
or ''the schizoid position,'' in psychoanalytic terminology. (Note that there is
much overlap between these ideas, but they are not identical.) However, diagnostic
constructs are fluid, and having participated in an online community of schizoid
individuals and their partners for over a year now, I'll tell you that anecdotally,
there appears to be A LOT of crossover between varying AS/high-functioning autism
diagnoses and schizoid personality. As far as coping strategies for you, I'll tell
you that the consensus seems to be that schizoid individuals are *extremely*
unlikely to change. In my case, I'm fairly solitary by nature, and have learned to
be even more comfortable with emotional distance, since my child's father is not
going to change and I don't want to end the relationship yet. The major difference
that ''discovering'' SPD has made in my thinking is that I no longer feel personally
insulted by his inexpressiveness and lack of consideration for others. (Not a very
heartwarming coping strategy, I know.) However, if Asperger Syndrome is a better fit
for your husband, I've both witnessed and read about AS individuals making major
progress and being fairly motivated to learn behaviors that make life easier for
them and their families. The Journal of Best Practices might be a good read.
Hopefully that will give you more solutions than I've been able to. You're not alone
but I don't have many answers; only ideas about framing the question.
I divorced my first husband because of a lack of emotional connection and he quite
was ''normal'', not Aspergers. I was young and didn't have kids so it was easier.
He was a nice guy but kept things on a superficial level. It feels very lonely,
empty if you can't connect on a deep level. It was amazing when I finally found
someone who I connected with on an emotional and spiritual level. He wrote me
poetry, talked about his insecurities and was interested in mine, wanted to know how
I was feeling. It's worth finding. If you truly feel you can't get a divorce now,
then maybe you should discuss having an open relationship. This is Berkeley after
all. I have a friend who has a husband exactly like yours and she didn't want to
divorce either. She now has a boyfriend and is happy. Since her husband isn't too
emotional, he could handle an open relationship without the jealousy many partners
might have. Let your husband know that your emotional needs aren't being met so you
want to get them met elsewhere.
-you never know until you ask
I feel your pain! I read your post with interest as I feel I am in a similar
situation. My significant other also gives the ''was a response required?''
non-response e.g. when I talk about feeling sad about a friend's illness, he does
not empathically feel anything, he just is blank, until I hint that he could say
something, and he will ask with puzzlement ''was I supposed to say something?'' Or
''tell me what I am supposed to say''. Any emotional topic is uninteresting to him.
He says a person can never know another person's situation. When I happily describe
something to him, he responds with a fact or says he is uninterested in the topic.
For example, when I proudly said my friend was the smartest student in French, he
asked ''how can you prove that? Until you prove it, I don't believe that''. He says
conversation is a means of exchanging information. I get frustrated as I would like
him to follow my train of thought or empathize but he just talks about what's on his
mind. He has trouble thinking about the same thing at the same time another person
is; it is impossible for him to take on another person's perspective. He does not
socialize and our social life would be nonexistent if I did not make an effort to
see my friends. In group gatherings, he spaces out and is uncomfortable despite my
attempts to facilitate conversation between him and others. He likes routine e.g. he
insisted on only seeing me certain days and times of the week for years and he is
totally thrown off by a change in plans, becoming confused and angry. Our
difficulties increased over time and as our social life stagnated due to his
antisocial ways. Otherwise, he is a wonderful, thoughtful, conscientious,
hard-working, and loving partner and we have lots of fun together doing activities
around shared interests. I do not think his lack of social and communication skills
is severe enough for an Asperger's diagnosis but it is annoying and he is not like
any other man I have been with! I deal with him by teaching him when he is being
inappropriate and telling him point blank what I need, otherwise he would not
intuitively know these things. But sometimes I am tired of teaching and coping, and
I end up yelling or crying because I do not get my needs met and am not heard and
understood. Good luck and I hope that in your case, getting an experienced
professional to mediate would decrease both of your frustrations and improve your
I'm sorry, I had to laugh when I read your post. From what you describe, it seems
you have a pretty 'normal' husband, the Aspergers thing I found hilarious for some
No offense, really, I can totally hear the pain in your post... and that is
definitely not funny
I'm also a decade into my marriage and have struggled with some of the same dynamic
you describe. I also have two very close friends who are in or have been in a
The first thing I would do is really look closely at yourself. How are you
contributing to the negative dynamic with your husband? What issues in your past
are being triggered?
When a relationship becomes as disconnected as you describe, it is not just one
person's fault. There's a dialog happening. I highly recommend that you seek
therapy with a therapist specializing in EFT (emotionally focused therapy). I also
highly recommend you check out the book ''Hold Me Tight''. It did WONDERS in
helping my husband and I recognize our own patterns that shoved us into a downward
spiral. More than anything, it returned the sense of hope I had lost in my
relationship. Things can get better (but you won't be going anywhere if you simply
blame your husband for what's happening). It's no ones' fault, it sounds like you
both have pain. Check out the book, it's good, it will help... and stop reading
about aspergers, lol Good luck!!
Anon (had to laugh)
To the Mindful Poster that responded to ''Marriage on the Rocks'', or
''Marriage -- When to Give Up'', I want to give you a HUGE THANK YOU
from the bottom of my heart!
I checked out the Podcast link you suggested regarding a husband and wife
that suddenly discover that the husband suffers from Asperger's Syndrome.
Like the wife on the Podcast, I have been at my wits end and have felt so
completely alone and ready to throw in the towel. My husband lacks empathy,
has very little or no compassion. He is awkward in social situations. He often
insults people without knowing it and then wonders why people are upset.
OMG. This Podcast and the quiz were eye opening on so many levels. I now
no longer hate my spouse.he just has Asperger's!
So here's the deal. What now? I am reaching out to you, wonderful BPN
Community to tell me what to do next. Even though my husband took the
quiz on the link from the Podcast (and was almost 100% Aspberger's) we
clearly feel he needs to get tested by a professional. So where do we go from
here? Check in with our Primary Doc? Sidestep that and head straight to a
Therapist that specializes in Asperger's? My guess is that my husband has a
lot of work to do on his own, but yet I feel like we have work to do as a couple
as well. Not to mention, I feel like I would love to explore a support group of
mates that have Spouse's with this Syndrome and the trials and tribulations
we deal with on a day-to-day basis. It's no picnic I assure you and I have
been flirting with the idea of divorce for a very long time. Net net; we need
Luckily my husband is on-board with treatment. Like the Podcast husband,
he is almost relieved at the diagnosis. He has been feeling alone and mis-
understood his entire life. Thank you again BPN Community. You rock.
That was me who posted about the podcast on Aspberger's
(actually there were two of us). Thank you for thanking me. I
am thrilled my This American Life addiction has been good for
someone. Good luck with the next step. It seems like you guys
have a lot of figure out, but knowing what you know about him
now will really help.
This organization will offer great support to both you and your husband. Social
skills can be learned!
I really need to find a support group for those of us in committed
relationships with adults with Aspergers. Please share your suggestions
I asked a friend who's a spouse of a person with Aspergers, and here's
what she wrote back:
The person can write to email@example.com to find out when the next
meeting will be. So far, the first and last one I attended was in May,
and they have not held another for the entire summer. As far as I can
tell, it is just a handful of people (all women), who are supposed to
meet once a month, but so far have met once in the last four. It seems
to currently be the responsibility of one person from the South Bay, and
the meetings tend to be held in South San Francisco. A friend
My three year old has recently been diagnosed with high-
functioning Autism. As I was reading up on challenges he
might face as an adult, I looked up ''adult aspergers
symptoms'' and almost fell over when it described my
husband to a tee. The realization was a bit much to cope
with at the time, but now that my head has stopped
spinning about my son and his supports are in place, it
feels like time to explore what might be Aspergers in my
husband. But how to go about doing this for an adult?
Who is the qualified person to see? Has anyone themselves
or a spouse gotten a later-in-life diagnosis? Was it
helpful? Also, do adult evals and services cost a bundle,
and is it ever covered by insurance? (Our resources are
When I realized that my husband probably has Aspergers, so
many of his qualities, quirks and personal challenges --
along with some issues we have in our marriage suddenly
made sense. His father and his family's dynamic suddenly
made more sense too. (I think his dad definitely has
Aspergers.) My husband is struggling right now at work
with some organizational issues and he becomes obsessed
with the details when it's not what's always required.
Are there people who offer career/personal coaching or
advice or therapy to adults on the spectrum? I also think
he's struggling with bottled up anxiety and I don't know
how to help him.
There may be a lot of healing and understanding that could
happen in his own family as a result of uncovering and
sharing this, but is that opening a can of worms (aka
I'd appreciate any insight, resources, groups, stories.
I'm in very uncharted waters right now and I want to help
my guys be happy, fulfilled and connected.
Our bright, quirky 15 yo. son was dxd with Aspergers at 8
yo. by a wonderful developemental psychiatrist in Los Altos
who helped us place the right supports in place (with great
results). Please check out www.teachsocial.com, its an
incredible wealth of information for families of kids &
adults with developmental disorders.The social thinking
guru behind it is Michelle Garcia Winner, she has a ton of
resources- books, a blog, workshops are amazing!
It's tough living with our guy but he makes life so
interesting..to say the least!
A friend of mine knows the people who put this site together
and she says they are amazing people. Hope this is helpful.
Lisa in Oakland
My brother was diagnosed with Asperger's as an adult, and it
was an Aha moment when my mom told me. My mom and I
speculated that my dad has Asperger's too, though he has not
been diagnosed. Well of course! So much makes sense with a
name. But that is so for my mom and me--not for my brother.
Note that I said when my mom told me, not my brother. He
still will not talk about it, feeling deep shame (he's
always had a terrible time with shame). He and I both had
learning disabilities as kids and had to go to the tutor
together. So mow I connect with him through that shared
experience, not through his diagnosis.
Check out the book, Neurodiversity, by Thomas Armstrong.
Very interesting reading. I gave my bro the magazine
synopsis, and try to talk to him about the value of some of
his peculiarities--but without pathologizing them at all.
But I don't think he'll ever turn around and talk to me
about this. It's just not his way. But that's fine with me.
Your husband might well have a very different feeling about
it since your son has been diagnosed. And maybe that is a
way the two of them can grow as father/son, by working
together. But tread carefully, lovingly, and respectfully.
Not same boat but same river
My adult brother has just been diagnosed with mild Asperger's
Syndrome. This is something I have long suspected. But it is a
surprise to him, and what's worse, it's an embarrassment. I
would like to help him find some relief and comfort in knowing
more about himself, and also advice on how to interact better
more mainstream people. I keep thinking that if he was a kid,
there'd be playgroups and all kinds of ways to help him overcome
his awkward social abilities. I am wondering if anyone out there
can help me find books and webesites about how to deal with such
a diagnosis as an adult, and good ideas about how to move ahead
and live a more integrated life. Thank you.
Two websites I know about are http://www.wrongplanet.net/ and
http://www.asperger.net/index.htm The first is run by people with
Asperger's and the
second is run by the Autism Asperger Publishing Company.
asperger's is difficult regardless of the age. as much of a shock
it is to your brother, it's good that he was diagnosed. he can
better understand why certain things are so very difficult for
him (and that it's NOT his fault) and get the help he needs. have
you ever read ''born on a blue day'' by daniel tammet? if not, read
it and if you like the book have your brother read it. i've read
a lot of books on asperger's and found daniel's book very
inspiring. good luck
This isn't exactly what you're asking for, but I was really
inspired by the autobiography Born on a Blue Day, by a young man
with Asberger's, Daniel Tammet. He is also a savant, which is
something totally else, so it may not be interesting in that
respect to your brother. But it may help you, if not him, in
understanding something about how another person with this way of
thinking thinks. It's also inspiring in what a man can do to
work with the challenges.
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