Advice about Asperger's Syndrome
Berkeley Parents Network >
Advice >
Advice about Health >
Advice about Asperger's Syndrome
June 2006
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?
hopeful mom
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
Asperger's/NLD highschoolers.
Anon
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
help.
Laura
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
ASIP program.
Lisa
April 2007
I suspect that my 11 year old daughter might possibly have a mild form of
aspergers syndrome.
Does anybody know of a professional that might advise me as to testing or
further help?
I also understand CAL offers a socialization camp and would appreciate any
feedback on that.
Many thanks!!
confused
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!
Jill
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!
Kat
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.
Anonymous
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
March 2007
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?
Teen's Mom
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.
Patti
Feb 2007
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.
Nancy
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.
Susan
October 2006
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.
anon
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.
anon
You might try one of the neurologists such as Dr. Jean Hayward or
developmental
pediatrician Dr. Mangravite. Both out of Oakland. However, I would
suggest self-
referring to the Regional Center of the East Bay. 383-1200 and ask to
have your
child assessed. Regional Center provides services for the
Developmentally delayed
population. They can assess him and it is no cost to you. However,
the assessment
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
the Regional
Center Website - rceb.org for more information about their services
anonymous
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.
Website:http://www.autismtreatmentcenter.org/
- Seen Son-Rise work!
April 2006
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
time.
cj
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
http://pec.ousd.k12.ca.us/index.html
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.
anon
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.
Info RE:
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
Pamela
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.
www.questcamps.com
anon
June 2005
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.
anon
M. Alex Peterson at Children's Hospital has a great reputation.
428-3000.
anon
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.
Barbara
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.
Anon
July 2003
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.
Wondering
Dear Wondering,
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
reclusive!
Ilene
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.
Good luck!
kaye
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
luck.
- Anon
July 2003
Looking for Asperger's support group in local East Bay.
Any leads? thanks much
Try contacting the Learning Disabilities Association, East
Bay Branch. You can reach them on the web. Good luck.
Linda
January 2003
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
your child?
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:
http://www.udel.edu/bkirby/asperger/.
Liz O.
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.
elaine
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.
Patrick
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''.
Good luck!
Inga
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.
mwk
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.
13th.
Gretchen Loughran
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.
ellen
3-year-old's "patterning" behavior -- Asperger's?
Feb 2000
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.
Home |
Reviews |
Advice |
Members |
Post a Message
Join BPN |
Help |
What's New |
Search |
Contact Us
Last updated: Feb 25, 2008
Copyright © 1996-2008 Berkeley Parents Network
The opinions and statements expressed on this website
are those of parents who subscribe to the
Berkeley Parents Network. Please see
Disclaimer & Usage for
information about using content on this website.