Monday, May 11, 2009

Autism Diagnoses: DSM V Should Separate Autistic Disorder from Aspergers and HFA

There are two major problems with the current DSM categorisation of Pervasive Developmental, or Autism Spectrum, Disorders. One is the lack of any relevant distinction between Aspergers Disorder and those with higher functioning PDD-NOS and autistic disorders.

The other DSM problem which generates much unnecessary conflict is the inclusion of these various disorders on a "spectrum".

This inclusion of substantially different disorders, with wildly different challenges, in one "spectrum" of disorders implies that the very serious challenges of persons with Autistic Disorder who lack a fundamental understanding of the world, who have very limited abstract thought and who have very little in the way of communication skills are somehow fundamentally similar to persons with good to excellent facilities in all these crucial areas of life.

The intellectual, understanding and communication deficits of the severely autistic should be recognized in a category separate from the high functioning persons who live in the media spotlight and purport to speak on their behalf, even while they deny their existence, and complain that honest description of their realities by loved ones constitutes stereotyping and "pity partying".

Research is resulting in more and more people describing autism in the plural as autism disorders with different causes and different possible treatments. The life realities for those with severe Autistic Disorder are much different than those of Ari Ne'eman, Dora Raymaker, Alex Plank, Michelle Dawson, Amanda Baggs, Jim Sinclair and other high functioning "autistics" and "Aspergians". The real life challenges of these two groups are very, very different and the DSM should reflect those differences.

As an added bonus if the DSM V modified its autism spectrum as suggested, ASAN and other HFA and Aspergers groups would not have to feel embarrassed by lower functioning, more severely affected persons with Autistic Disorder. My son Conor, who I love dearly, is one of those lower functioning, severely autistic persons that the Neurodiversity crowed is embarrassed by. I speak honestly about his challenges. I do so as the father that has loved and cared for him for 13 years and will do so as along as I am alive. I do not see his autism realities, his real life challenges and prospects reflected in the ideology and rhetoric of the "autism is a culture, a natural variation" crowd at ASAN.

It is time for the DSM to get realistic about the Autism "Spectrum".

It is time to merge High Functioning autism disorders with Aspergers Disorder and separate them from Autistic Disorder.

It is time for the DSM to recognize the importance of levels of ability to function in and understand the world and to reflect those levels in their classification of development disorders.

I say this on behalf of my son with Autistic Disorder and profound developmental delays. I say this as the person with the legal and moral right to speak on his behalf since he cannot.




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6 comments:

farmwifetwo said...

Ditto.

Why do these "autism groups" think they speak for all with autism. They claim to know more about my son who I live with 24/7 than I do and they've never met him.

Got a "thanks for the epic" letter from my MP today. Wonder if I'll get anymore???

Feels good to have had my say.

S.

Marni Wachs said...

Great idea!

Separate categories for separate entities.

teromakotero said...

Excellent post! I am a special education teacher teaching children with autism spectrum diagnoses. I think it would be important to constantly be critic about the criteria for autism diagnosis and the subgroups that exist in it. Every subgroup might need it's own treatment and way to teach. Maybe inside the autism diagnosis there are subgroups wich have nothing to do with each other. All these questions are important to study in the future.

teromakotero said...

Today I found an interesting post in Eide Neurolearning Blog http://eideneurolearningblog.blogspot.com/2009/04/different-mri-findings-in-autism-autism.html about the same theme.

Marius Filip said...

Excellent idea, but I think it will not gain traction.

While the severity of the disorder is of maximal importance for the individual with autism, I believe (but I don't know for sure) scientists see it differently.

Example: the narrow area of interests and the repetitive occurence of themes found in Asperger Syndrome are (perhaps) the equivalent of the eye avoidance, the focus on tiny objects and the repetitive movements found in classical autism.

That is, the same basic characteristics but in more or less intense forms and in more or less dramatic manifestations.

I agree with the article shown by Teromakotero that the neurological reality should be basis for an autism diagnosis and, more important, for what kind of autism that one might have.

Anonymous said...

Not all individuals with Asperger's are brilliantly verbal individuals with outrageously high IQs.

I have a son diagnosed with Asperger Syndrome who is very debilitated by the autistic symptomology that is part of his diagnosis.

He has been diagnosed and rediagnosed over the years (4 times in all at this point) and every time the answer is the same ... Asperger Syndrome but far more Autistic in nature than what is usually seen in individuals with Asperger Syndrome.

Why should children like mine be made to fall between the cracks (they already do but let's not make it worse for those individuals and families with children such as mnine) just because parents and caregivers of non-verbal Autistics think that by virtue of having the ability to 'speak' means that a verbal Autistic is somehow so much more capable? It isn't necessarily so.

Acceptance for all who have Autism please ... even those Autistics with Asperger Syndrome.