Expert: Catherine Ridenour - 2/10/2008

Question
We took my 4 yo daugter to a child psychologist.  We did not know anything about AS at the time.  But we were having lots of "difficulties" and when i spoke to her pediatrician, he referred us to the psychologist.  The problems were mostly just very weird behavior.

She is number 4 of 6 children, and something was (is) just very diffferent about her.  She doesn't seem to "get" many things the other children (even the younger ones) intuitivly know and understand.  I don't want to get too lengthy describing all her unusual mannerisms, but will try to get to my main question with as little background info as possible.  

The psychologist after asking me to describe my concerns spent about 15 minutes with just my daughter.  When I came back, she said that she had quite a few asperger traits.  However, she did not feel like that's what she had.  She said she just felt like she was just an "extremely quirky" little girl (her words).  She reccommended we use some at home social skills training to work on that part.  She did however send us to a developmental pediatrican for further evaluation.  (which was in the same office)  

They happened to have a cancellation and we could see them that very day in just a few hours.  So we went to lunch and returned to the clinic (I did not have time to research this "Aspergers" before seeing the dev. ped.

So we go in to see the dev ped and it was pretty much the same thing. She just asked a few questions.  She never did evaluate my daughter other than watching her play in a corner while we talked about her.  She said pretty much the same thing the psychologist did except for one thing.  She had noted on the psych report that my daughter had stared in a trance-like state at one point in the evaluation.  Because of that she wanted to send us to have an EEG, just to rule out seizures.  Well, I had noticed her doing that a few times in the past as well, so we set that up.

In the meantime, we ordered the books that they had recommended.  Social Stories, Navigating the Social World and a couple of others.  I realized these were books that were for children on the autistic spectrum.  I began to research AS and other PDDs.  I am now seeing so much in my daughter that I didn't mention to the psy or dev ped because I'd never noticed certain behaviors--mostly some OCD type behaviors.  Also, as we are learning more about it, my husband thinks there is a very real possibility that he could have been diagnosed with this as a child, if it were diagnosed back then.  I met him as an adult, and he's always seemed pretty "normal" to me, other than he does have major special interests.  He was diagnosed as a child with dyslexia and was ADD.  

So anyway, we were at that point thinking that maybe she really did have it and it just wasn't "bad enough" to diagnose.  Then we went for the EEG and have just found out last week that there are some "electrical mis-fires".  So now the dev. ped. is sending us to a child neurologist.  The bad thing is, that we don't go to him until June!  

Now I don't know what to make of all this.  Could whatever is wrong with her EEG be the reason that she's "different" or could she really have AS and just be high functioning enough that they aren't giving it an official diagnosis?

I know that you can't give me solid info without seeing her and getting more info, but can you shed any light on what the new development with the EEG may be, after the original lack of diagnosis.

Sorry this got so long.
Thanks

Answer
Hi Angie,

Don't feel bad about the long question. I can answer better with more information.

I would say that your daughter probably does have AS and when the social demands of school set in, it will be quite apparent. Doctors are reluctant to diagnose (label) young children if the symptoms seem "mild." The trouble is that what seems merely "quirky" at home becomes downright "weird" at school. Families adapt and tolerate, classmates usually don't. Without an IEP (and that requires a diagnosis) she will struggle.

Spending 15 minutes with a child is not adequate to confirm or dismiss a diagnosis. There are parent survey forms and other testing methods to get a clear picture of what is going on. They should have offered you these questionnaires and done a return visit for further evaluation.

You would be wise to use the social stories and other techniques as early intervention is more effective than trying to correct things later. Even if you can't get a diagnosis, right now, work with her.

Seizure disorders are more common in kids on the autistic spectrum than in the general population. Don't panic, most of the time it is the "absence" type you observed where she zones out for a few seconds. It is important to follow up on them, regardless. She will probably be quite safe to wait until June. The hard part is the "not knowing."

Here is a list of web sites for more research:

http://www.neurodiversity.com/main.html (many links to books, articles and resources)

http://www.patientcenters.com/autism/news/resources.html (books and resources)

http://www.ninds.nih.gov/disorders/asperger/asperger.htm (the definitions and
government links)

http://www.rettdevil.org (a discussion board for parents and persons with neurological and developmental disorders)

http://www.autism.org/ (many links to information)

Best wishes,
Catherine