Aspergers or Gifted; Take Your Pick

February 11, 2013

This response gets a page of it own so I can Tweet it and FB and more people can read it. This story is mind-blower. Thanks AnonyMom #2

I believe I am the parent you mention. Your outline of the situation is pretty close to factual. I’ll give a few more details… 
Several years ago I decided to send my child, who had been experiencing social issues and anxiety, to a private school which we thought would be a better fit. Before paying the full tuition, however, I wanted another opinion on the school so took my child to a well-regarded child psychologist who had previously been ‘unofficially’ recommended by my child’s public school. A lengthy and costly psycho-educational assessment was recommended and performed. The verdict? Aspergers. I was advised to get a code of ‘severe disability’ for my child in order to get the resources needed. It was explained that this code gave schools several tens of thousands of dollars to get my child the support needed. It was recommended I seek social skill training through that office. A specific charter school – not the school we had chosen – was recommended. Although I am not sure (no, the psychologist did not tell me this and it may not be true), I believe that the recommended charter school may offer social skill training through the psychologist who gave the diagnosis. 
After a few days of reading and researching Aspergers, I met with the psychologist again and outlined my belief that the diagnosis was wrong. To my shock, he agreed with me almost immediately. He said he NEVER believed it was Aspergers, but provided the diagnosis of the junior psychologist who’d performed the assessment. That's right - he’d given us a diagnosis he did not believe. Why? He believed that Aspergers was under-diagnosed, and that undiagnosed Aspergers was ‘tragic’. He’d rather give a wrong diagnosis that ‘gave us resources’ than fail to diagnose true Aspergers. He also said that the assessment report could be written pretty much any way we’d like, including the ways you outlined*. Seriously. (*see previous blog Codes & Consequences)
I did not pursue a code or a report at all. We did place my child in the private school originally chosen. It has worked out better than I could have dreamed. My child is now confident and has blossomed socially, with a circle of supportive friends. 
I do often think … what if I had listened to the experts and followed their advice? What if I had not pushed back?
A diagnosis of Aspergers (and from what I understand, many codes) does indeed exclude a child from many charter and private schools, including the one my child now attends. I do not know if such a report, or code, can be reversed based on changed or second opinions. My suspicion is that this would be problematic.
I am not saying that a code is, in itself, bad for a child. I believe that codes, and those who create and administer them, are very well intentioned. Codes are probably a god-send for many parents of children with special needs. My advice however, based on my experience, is to question the experts. Learn as much as you can about the advice, and the ‘code system’, before following it. Think it through with the awareness that it is, at the least, likely very difficult to erase this kind of label. And trust your gut. You are the expert on your child.
I also choose to post anonymously to protect my child. However I suspect that the need for anonymity creates a bit of a veil around ‘the system’ (which includes psychologists, educators and administrators) and likely leads to it being misunderstood, or not understood at all. For that reason I strongly support parents talking to one another about this issue, even anonymously and even without perfectly complete information. We cannot blindly trust a system we do not understand, and how else are we going to understand it? Parents need a voice too. And if there are educators or psychologist who can shed some more light or provide their perspectives, that would be helpful too. So thank you for opening up the discussion. Let’s keep talking.