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. 

Read more »

Autism Reality NB at IMFAR 2012 in Toronto, Canada

I am off tomorrow morning, very early tomorrow morning, for the IMFAR 2012 convention in Toronto.  I am very excited to be attending and blogging courtesy of Autism Speaks, Autism Speaks Canada, Dana Marnane and Suzanne Lanthier.  It was a tough day today though. Conor knows Dad won't be home for a few days and he has been a bit agitated.  This afternoon I received a call from the good people at the Leo Hayes High School that Conor was not having a good afternoon. They thought it better that he stay at school until his regular departure time though and I agreed.  When I picked him up I was informed that Conor had in fact calmed down and the rest of the afternoon had gone well.  Conor will miss his old Dad until I return Saturday night.  I might react differently but I will be missing him too.

It is worth it though to attend IMFAR with the annual concentration of autism research and knowledge being hosted in Canada. I am looking forward to blogging about IMFAR from the perspective of a father of a 16 year old son severely affected by his Autistic Disorder.  I underlined Disorder intentionally.  Autism for me is not a culture or a way of life. It is not just a different way of thinking.  It is a serious disorder that restricts my son's life, my son that I love dearly.  I want to attend IMFAR and learn  as much as possible and, hopefully, convey what I have learned, filtered through the perspective I have provided at Facing Autism in New Brunswick for 6 years. It is the perspective of a realistic, caring father who refuses to drink the "autism is a blessing" feel good Kool-Aid of the Neurodiversity advocates who insist on obliterating from public awareness the harsh realities inflicted on so many, including my son, who suffer from autism disorders. 

I hope the IMFAR convention brings news of real progress in autism research.  Although I am a realist I do not give up hope, hope based in solid research.  

I thank Autism Speaks for this opportunity.

Read more »

Autism Reality in Minnesota

In Why does Minnesota have the nation's highest autism rate? City Pages looks at a study published in 2007 by Daniel Hollenbeck, the director of information technology at Thoughtful House, an autism research center in Austin, Texas who estimated that "one in every 81 births in Minnesota is a child who will be diagnosed with autism—about twice the national average." The article points out that a Minnesota Department of Health child health epidemiologist is "leery" of the Hollenbeck estimate in the absence of a population based system at the public health level in Minnesota.


The article also features Tim Casemodel who is facing autism in Minnesota, having quit his job so that he can provide full time care to his 11 year old severely autistic son. His son makes only grunting sounds and still wears a diaper. Like so many autistic children it is a parent, in this case his father Tim, who actually sacrifices and fights for his autistic son's well being.

autism

Read more »