Thursday, June 24, 2010

Our Day at CHOP

And what a day it was!  Son was so good and cooperated with all the tests and questions.  We each spent the morning answering questions and filling out forms.  But in the end, we were not chosen to participate in the study.  I will get a final report on all the tests that they gave us in about 6 to 8 weeks.

I met with the Dr in charge of the study after lunch where she verbally reviewed the results of the tests.  She dropped a bomb shell on me then.  She doesn't think that Son is Aspergers.  She said they gave what is considered the Gold Standard in Autism tests and while I reported the appropriate symptoms, Son didn't present as Aspergers in his interviews.

She indicated that there is something different about him and that it might be more ADD/ADHD than Aspergers.  Her report will include recommendations for me to look into making sure he has appropriate treatments.  She suggested consulting with a psychiatrist to explore medicating him to see if that would help his behaviors in the school setting.

She even had the nerve to put down our Aspergers Doctor who diagnosed Son.  The Dr who has been named Autism Doctor of the Year for the last three years in our state.  Not to mention the list of credentials and YEARS of experience in the field and not behind a desk that he has over her.

Ok, so I have a little anger over what she told us.  But what parent DOESN'T question a diagnosis of their child?  At this point, all I can do is wait for the report, read through it and decide what the next step will be.  In the meantime, we will continue with therapy and my homework.  And his IEP at school will continue as well.

In a way, I am glad that we didn't get picked because we were able to leave around 2 and missed all the rush hour traffic.  And we don't have to go back in a couple of weeks, I don't have to talk Son into doing the MRI scans or the needle to give the blood. 


  1. it is not too uncommon unfortunately...just had a bout with a doctor that questioned the aspergers diagnosis of a client...

  2. You're just trying to make sure your son gets the exact help he needs, so I totally understand.

  3. You don't say what the test(s) were. Just, the "gold standard." I assume that you mean the ADOS and ADI-R (Autism Diagnostic Observation Schedule). If your doctor didn't give those he or she my very well have been mistaken. If you want to say one was right and one was wrong, tell us what the tests were. Give us data rather than emotion or opinion. Many times diagnosis of ASD are not complete because observational tests are not completed. There is often a difference between what parents tell a professional (as you said, you answered the questions correctly) and the structured observational schedule. How was the original diagnosis made? And how was this one made? That's what we need to know.


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