Reactions to the Proposed Changes in the DSM-V

There have been a lot of strong reactions to the proposed changes to the criteria for an Autism diagnosis in the revised DSM-V. We wanted to present some thoughts from some of the people we rely on most:

From Julie Azuma:

We’ve all known for some time that the DSM V is going to exclude some children on the spectrum as in the Asperger’s Syndrome student. Everyone has been asking what we think about it.  The article in last week’s NY Times, alarmed many of our families.

 When Different Roads started participating in the autism community back in 1995, Asperger’s Syndrome was little known.  Somewhere around the year 2002, there was an answer to so many parents who questioned the behaviors of their kids.  Michael John Corley, an advocate of adults with Asperger’s Syndrome said in the NY Times last week, and I paraphrase…”some people needed to give it a name and to understand. ”

For those parents of children who are more classically affected by autism, they will continue to get services; those without language, academic or daily living skills.  And we want them to continue to get support.

Even if Asperger’s Syndrome or PDD NOS in no longer in the DSM V, we think that the cat is out of the bag.   Awareness has already set in.  Parents will continue to advocate and fight for services, classes and programs for their children. One way or another, this will not be a setback but a new road of discovery on ways to support all of our kids.

We know our parents, and we know that they won’t give up getting whatever their children need.

 From Justin DiScalfani, Clinical Director of The Elija School

The proposed changes to the DSM-V for the Autism Spectrum Disorders would have a profound impact on those dealing with this disability. These changes would greatly reduce the rates of people diagnosed with autism. The primary question is: What will happen to those that would have received a diagnosis under the old criteria but no longer receive the diagnosis under the new criteria? The biggest concern with combining the different diagnoses from the current DSM-IV (Asperger’s, Autism, PDD ) into one category with only three different levels is that it may exclude thousands of children and adults from obtaining crucial services that are necessary for them to become functioning members of society. Policy makers and school districts will be able to use this change as an opportunity to restrict services to those in need. They may also use the proposed level system of severity to allocate more services to the more severely impaired individuals while more mildly impaired individuals may not be given adequate services. Another extremely important area of concern surrounding this change is that it may restrict insurance coverage for people with Autism that many families and advocates have worked so long and hard to reform and recently pass across the country.

Combining the diagnoses of Autism and Asperger’s may also have a negative social impact for these groups. Many children and adults have formed identities for themselves to help cope with their disabilities and to advocate for services for themselves and others around them. People diagnosed with Asperger’s will often refer to themselves as “Aspies”. People with this diagnosis have also formed social groups during which they meet others with the same diagnosis to discuss difficulties that they face and ways in which they are able to integrate into society. By combining all Autism Spectrum Disorders into one category, people such as the “Aspies” could suffer a great loss of personal identity.

Finally, another major issue with the proposed changes concerns the research that has been conducted on the etiology and treatment of these disorders over the past decades. Many studies select subjects based on their diagnosis. With the combining of the diagnoses into one large category, it will be difficult to compare any research that has been conducted in the past to research that will be conducted in the future.

Here’s a piece that aired on ABC News, featuring ELIJA’s Co-Founder and Director, Debora Harris-Thivierge:

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