Friday, May 18, 2012

DSM5 Autism Day At IMFAR 2012: Swedo Confirms Some Intellectually Disabled Will Be Excluded from DSM5 Autism Spectrum Disorder

Today was DSM5 Autism Do-Over Day at IMFAR 2012.  Dr. Susan Swedo, head of the DSM5 committee that drafted the DSM5 Autism Spectrum Disorder, spoke twice today, once at a stakeholder's luncheon  and afterwards  at an oral presentation in the Grand Ballroom.  Dr. Swedo replied to my questions after the second presentation and indicated that the DSM5 Autism Spectrum Disorder will exclude some, though not all, intellectually disabled from an ASD diagnosis.

I attended both events but did not have an opportunity to question Dr. Swedo during the luncheon as the event was simply running out of time. During the luncheon presentation she was very emotional in discussing the media criticisms of the DSM5  Autism Spectrum Disorder. At one time she accused some in the media of telling lies about the motivation behind the new DSM5.  It was not done, as alleged by some, to cut back the autism epidemic and save costs for insurers.  It was done because the DSM5, according to Dr. Swedo, reflected experience with autism disorders and careful study. It was done to improve specificity in diagnosing autism not to eliminate some.  Having heard her speak with great emotion and conviction I don't question Dr. Swedo's sincerity, her compassion or the motivation behind the redefined DSM5 autism definition.  I do disagree with the specific targeting of intellectually disabled for exclusion from the DSM5.

Dr. Swedo delivered an expanded version of her presentation in a late afternoon session.  Her remarks began, as they did at the luncheon, with a vigorous attack on the media for their DSM5 coverage and misrepresentations about exclusion of high functioning persons with autism and the motives which prompted the new definition. Dr. Swedo said nothing about the exclusion of intellectually disabled until I asked voiced my concerns during the question period about the exclusion of intellectually disabled from the DSM5 definition by operation of the "not accounted for by general developmental delays" exclusionary clause in Mandatory Criterion A of the DSM5's new ASD.  Dr. Swedo indicated that the exclusionary phrase would result in exclusion of some but not all intellectually disabled from a DSM5 Autism Spectrum Disorder.  

Dr. Swedo's comments confirm that the expansion of autism in recent editions will culminate with HFA/Aspergers as the new Autism.   Many of the vast majority of persons with autism and intellectual disability that existed prior to the DSM-IV are now being kicked to the curb; removed from the autism spectrum. 


Anonymous said...

thank you for asking the tough questions, and getting a response from one of the authors itself. I agree those with an intellectual disability as well, like my son, will be excluded.
The 'New Autism' eh....cheezzee

John Robison said...

Harold, let me toss out a few thoughts for the sake of discussion:

First I congratulate you for pressing on the ID-autism issue. Whether of not your son would or will be personally impacted I think it would be morally wrong to withdraw a diagnosis that a severely impacted person has had all his life, without very compelling reasons. And I am not hearing those reasons in that part of DSM5 debate.

Next . .

The big thing that was totally missing from that DSM5 discussion was the enormous strides we are making toward a medical diagnosis of autistic differences in the brain and or body. You have read about the various genetic markers that are currently under study, many of which are tied to very severe autism.

Within a decade, quite possibly sooner, I suspect we will have hard tests for many autistic markers. When that happens, the DSM5 may well be rendered irrelevant for your son and many others.

To me, that is the brightest of prospects. If we could test your son’s blood and say, Conor has xxx marker for autism, the next step would be for us to develop a therapy to reverse or mitigate the disabling impact of xxx. That would be a powerful thing indeed. And many researchers are working toward that very thing, with many different markers.

Behavioral therapy isn’t getting us quality of life improvements for the severely disables autistic population, but genetic science might. Seeing results last year, like the PTEN findings I wrote about, I have a lot of hope.

I missed that meeting so I will ask you: Did you hear the medical testing alternative discussed at all, particularly as a future alternative or substantive replacement for DSM5 ASD?

Second, to speak to your son’s situation

He has a diagnosis, and he is receiving services. His disability is obvious; presumably no one involved in his care doubts his need for support. How would he be threatened by DSM5 change? In America, if he were receiving disability services that would not be affected by DSM changes. His eligibility for services would instead be based on an evaluation of his abilities and situation, conducted by some kind of social worker. Even if DSM5 changed, his own situation would not and that’s what his supports would be based on. Is Canada the same, or do they give disability support in a different way?

It was good to put a face to the name and meet, brief as it was

Best wishes

Usethebrains Godgiveyou said...

" It was not done, as alleged by some, to cut back the autism epidemic and save costs for insurers." Interesting, where have I heard that before...?

Barbara @therextras said...

(Sorry 'bout that.) Now where was I?

Another reference thought...multiple intelligences (theory), adequately explained here:

Autism's defining characteristics are necessarily void of intelligence but that depends on how intelligence is defined.

From near every corner of a room of stakeholders I see an inexplicable need for words that mean anything but intellectualdisability.

John's most cogent sentence included "a medical diagnosis of autistic differences in the brain and or body". Thank you, John. Until 'diagnosis' is physiological as opposed to behavioral, there will be semantic problems with diagnosing.

I suspect my comment is of little help, but I am appreciative of the opportunity to explain my tweet, to you, Harold, even if you decide not to publish my 2 comments.