Sunday, May 15, 2011

Low Functioning Autistic Persons Remain Invisible on CNN and in the DSM-5's New Autism Spectrum Disorder

Elizabeth Landau, a CNN Health writer/producer, mentions briefly the DSM-5's New Autism Spectrum Disorder, in a report on the organizational changes in the DSM-5 in Psychiatry 'bible' structure overhauled. Ms. Landau's discussion of changes in the DSM autism classification focuses exclusively on the impact the formal inclusion of Asperger's syndrome in Autistic Disorder will have on persons with Asperger's and parents of children with Asperger's.  No mention is made of the impact on that the changed definition of autistic disorder will have on the invisible autistics, those with actual autistic disorder, often low functioning, with intellectual disabilities, who are likely to live their adult lives in some level of residential or institutional care:

"This organizational framework is trying to emphasize that we don’t have strict divisions between disorders," Regier said.

For instance, Asperger's syndrome, a high-functioning form of autism, instead of being its own diagnosis, would now fall under the broader “austism spectrum disorders.” This move has some parents unhappy because "autism" sounds scarier than Asperger's, which has taken on its own identity in that community, and because children with Asperger's have specific educational needs that are different from kids with more severe autism.

But the association has heard from other parents frustrated that their children with Asperger's are denied special education benefits reserved for autism, Regier said. And biologically speaking, Asperger's is a form of autism, doctors say.

CNN, of course, is not unique in excluding mention of those with autistic disorder, particularly those severely affected by autism disorders, while discussing changes to the DSM autism diagnostic category.The process started in 1994 with the DSM-IV. The DSM-IV revision included a de facto inclusion of Asperger's with Autism in the Pervasive Developmental Diosrders.  The new revision completes that process and waters down further the requirements for a diagnosis of autism. 

As previously noted by CDC autism expert Dr.  Marshalyn Yeargin-Allsopp the DSM-IV definition change, amongst other accomplishments, lowered the rate of persons with autism AND intellectual disabilities ... by expanding the definition of autism to include persons who were by diagnostic definition not intellectually disabled.  Autism's "vast majority" to quote Dr. Yeargin-Allsopp became a large minority.  With the new changes more persons without intellectual disability will be diagnosed as autistic under the watered down definition.  The APA will have taken another large step toward lowering the rates of persons with autism and intellectual disability, not by helping to improve the condition of those persons but by redefining them to a  smaller corner once again. 

It will be easier for APA members, and other health professionals,  to ignore low functioning autistic persons as they become a smaller and smaller percentage of the DSM's New Autism Spectrum Diosorder.  It will  also be  easier for Autism Speaks to continue its feel good "autism" fund raising by promoting  the careers of very high functioning persons with Aspergers, like John Elder Robison and Alex Plank, as the faces of autism when their diagnoses are officially changed from Aspergers to Autism Spectrum Disorder. And it will be easier for Autism Speaks to retain its status as Autism Without Intellectual Disability Speaks.

Meanwhile the vast majority of those currently diagnosed with Autistic Disorder, those who also have intellectual disabilities, those with low functioning autism disorders, will become even more invisible to the public eye. 


Usethebrains Godgiveyou said...

>>And biologically speaking, Asperger's is a form of autism, doctors say. <<

This seems incorrect. There is no biologically definable basis for autism, is there? I thought everything from the DSM was behaviorally based, with the exception of known genetic causes.

That's why it's considered "flaky" in some circles.

Mommie that Gets It said...

WoW! Very sad! I keep hearing such negative things about "Autism Speaks". Autism is very serious. I understand that people want to put out these huge success stories but that does not help with the day to day struggles of dealing with a child with autism. It is almost like manipulating reality.

Thanks again for the great post. All the best! Heather

Anonymous said...

True, but those high functioning will at least need to admit to needing support to truly qualify for a diagnosis. That might make some of them no longer wish to identify. I'll keep taking my son with me in public so others can really see autism. Everyone stares!!!!!He's good looking but his behaviors are enough to keep even the most polite watching!

Anonymous said...

I agree with Mommie That Gets It. It is great to see all these "success" or "cure" stories about autism and the very high functioning succeeding in life, but we must not forget those who are really severely affected by autism.

I'm a staff member who works with adults with autism, who cannot, speak, dress themselves, toilet themselves, or simply understand how to "sit still" for more then a minute. There is no cure or recovery for them, they will always be disabled by autism, and this world needs to see that side of autism!

trainspotter said...

That should simplify things *eye roll*. Just last week I had a courageous mother ask me what my daughter's "problem" was. I smiled and said "She has autism". The mother excitedly replied "Oh, like that kid on the show 'Parenthood'!" I smiled again and said "Sure, like that... with blood and guts!" I probably would have given her a more informative answer if it weren't for the fact that my low-verbal 8 year old was kicking me in the head at the time.