Tuesday, February 7, 2012

Proposed Changes to the Autism Diagnostic Criteria

Jakes has Asperger’s Syndrome. I remember getting the paperwork from the child study team and reading, Autism. I was SO angry! How could these people say there was something so seriously wrong with my child? My child doesn't act like the stereotypical Autistic child I've seen on TV.

Since my job includes a lot of research, I immediately went online to look up more information about Autism. I found the current DSM-IV diagnostic criteria and compared it to how Jakes was acting in school. I didn’t think that he fit into the criteria for Autism and I told the child study team exactly what I thought and why. I detailed the diagnostic criteria and Jakes symptoms for them.

A couple of days later, I received a letter from the child study team with a revised recommendation of Asperger’s Syndrome. They also included the DSM-IV diagnostic criteria and had marked on the paperwork how they felt Jakes fit into the criteria. I had to agree. After having him evaluated by a top neuropsychologist, it was official. Jakes has Asperger’s Syndrome, a form of Autism.

With the current DSM-IV criteria, Asperger’s Syndrome is considered on the Autism Spectrum but is considered its own disorder. This allows Jakes to get tons of services as he needs them, through the school, through outside therapy agencies, through the child welfare agency, and through our local Autism Center.

Fortunately, Jakes has learned to cope with his Asperger’s Syndrome, progressing from needing an aid at school as well as daily and weekly therapy sessions to no therapies at this time and no aid at school. They are even talking about changing Jakes from an IEP down to a 504 plan! He has come a long way. But he still needs services under the Asperger’s diagnosis.

With the proposed changes to the DSM-IV Diagnostic Criteria, there will be no more Asperger’s Syndrome. It will be Autism or nothing. The American Psychiatric Association says that the new criteria establishes degrees of severity for the disorder and would help provide more targeted treatment for patients. The new criteria is designed to lead to more accurate diagnosis and to allow therapists to design better treatment interventions for children who suffer from Autism Spectrum Disorders.

I did a quick review of the proposed diagnostic criteria for Autism and I believe that Jakes would loose his diagnosis, therefore, the services he still needs. I am by no means an expert on translating the diagnostic criteria to Jakes symptoms but I know how to read and most of all I know my son. I would not be surprised if he were re-evaluated under the new diagnostic criteria that he would no longer be on the spectrum. Fred Volkmar, head of the Children’s Psychiatry at Yale University believes this revision would exclude up to 60% of children now suffering from Asperger’s syndrome. 60 PERCENT of the children would loose their diagnosis!

Now, as a parent of an Aspie (a common nickname for Aspergers’ kids), I might find it offensive or even scarier to say my child has Autism. In today’s world the word Autism may conjure images of a child who cannot make eye contact and sits and rocks back and forth, wishing they knew how to make contact. I’m sure there are many parents of Autistic children who would be offended to have my high functioning child classified as an Autistic child.

I remember my initial reaction to being told that Jakes had Autism. Hearing that was so scary and maddening. Hearing that he had Asperger’s was comforting in a way. I didn’t want my child to have Autism, but it was okay for him to have Asperger’s Syndrome.

There will be more debates on the new diagnostic criteria for Autism and Asperger’s Syndrome in the near future. For Jakes sake, I hope they find a way to include him and all the others like him on the spectrum. They need and deserve the services as well as all the other children currently on the spectrum.

But we can help with this discussion, we can let our voices be known that we do not agree AT ALL with doing away with Asperger's and other Autism sub-types in the new DSM-V.  There is a petition where we can shout out and let the American Psychiatric Association know that we don't want at least 60% of our children to loose their diagnosis and services.  Please go here, sign the petition and fight for our children, fight to keep Asperger's Syndrome and other Autism sub-types as their own diagnosis'. Fight for Jakes to keep his needed services.

Thanks to Blogging Mama Andrea for sharing the petition with me!  You ROCK!


  1. oy, this while on some levels will be clarifying it also opens up a huge can of worms...it is like what they have done with the approval process now for services...having to go to the CSB and having an evaluation...while on some levels it helps weed through, i think that there are those that now fall through the cracks...and it is money related plicy decisions...you just have to look at what they celebrate...money savings...sorry i went way off topic but as a counselor it can be def frustrating too...

  2. No, YOU rock. I've learned so much about autism and aspergers from reading your posts. Today we moved Vanilla from a 504 to an IEP (finally!), something that he needed to be on. Even though he has tested off aspergers, which neither his father or myself agree with completely, we still feel he really exhibits so many traits, losing the aspergers section of autism is maddening.

    So many kids will be hurt by this decision, so many. We don't take the services we can get lightly - we have to fight fight and fight to get them to begin with. If they remove aspergers, I really worry what will happen. The services we fight for...they won't even be an option anymore.

    And that's sad. Sad for me, you and every other parent and child out there affected by aspergers.


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