Saturday, June 02, 2012

DSM5 Autism Change Threatens Funding for Intellectually Disabled Who Meet DSM-IV Autism Criteria

Many children with intellectual disability and autism will be specifically targeted for exclusion under the DSM-5 new Autism Spectrum Disorder. The express wording of mandatory criterion A of the DSM-5 ASD criteria makes this clear:

Must meet criteria A, B, C, and D: 
A.    Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays"

Very, very few people, apart from myself, have expressed any concern over the express and specific exclusion of intellectually disabled from future autism disorder diagnoses.  No one has seriously discussed the rationale for targeting the intellectually disabled in this fashion.  The NYT has been upset over the likely removal from the autism spectrum of very high functioning persons with autism and Aspergers but has expressed no similar concern over the exclusion of the low functioning, intellectually disabled.  The most vulnerable, as they have been so often, are not considered as worthy of our concerns as the less vulnerable members of the autism spectrum. 

It came as a pleasant surprise to me to read an article on, Changes threaten funding for children with autism, that mentions the likely exclusion of intellectually disabled children with autism, as well as high functioning children with autism, under the DSM-5 Autism Spectrum Disorder. Featured prominently in the article are comments by a medical doctor and by a health care organization administrator which highlight the negative impact on funding for autistic children with intellectual disabilities resulting from the DSM5 autism changes:

"Children diagnosed with both mental disabilities and autism might no longer be eligible for autism services, if a new diagnostic manual is published as currently written.

Local families might have to pay out of pocket for their children with these dual diagnoses to receive autism support services, said Joseph Barber, M.D., an Erie pediatric neurologist.

"The concern is that funding for 'intellectual disabilities,' which is the new term for mental retardation, is more limited than the funding for autism," Barber said."

"The good news is that a recent study by Autism Speaks determined that the same number of children would be diagnosed with autism under DSM-5 as they would currently," said Maureen Barber-Carey, executive vice president of the Barber National Institute. "The concern is that children with intellectual disabilities would not be eligible for autism funding."

Dr. Susan Swedo, in reply to my questions at the IMFAR 2012 conference in Toronto recently, did indicate that not ALL persons with intellectual disability and autism would be disqualified from autism diagnoses under the DSM5 ASD criteria.  She indicated that the social communication challenges of mandatory criterion A would have to be present independent of the intellectual disability and would have to arise separately from autism.  How professionals would make that distinction in future is not clear to me.  Nor is it clear why, it should matter if an intellectually disabled child has serious social communication deficits he/she should not receive an autism disorder diagnosis if the other mandatory criterion for an autism diagnosis are also met.  

What was clear at IMFAR was that Dr. Swedo, and presumably the other members of the DSM5 committee responsible for the DSM5 Autism Spectrum Disorder, are feeling the pressure from the uproar over the possible exclusion of some higher functioning persons who would qualify for an autism diagnosis under the DSM-IV.  They appear to be hunkering down and are unlikely to make changes to the DSM5 autism criteria.  If they do though it will be at the high functioning end of the spectrum where the heat has come from not from the low functioning, intellectually disabled end of the autism spectrum where very few outside of myself and a few health care professionals in Erie appear to give a damn.


Autism Mom said...

Well, since our regional center is nothing but a bothersome bureaucratic organization which offers us nothing in the first place we won't miss anything.

Anonymous said...

Aside from the fact that it will impact funding for services, even if these services were to be provided under the intellectual diagnosis label, it would not be the same type of services or same intensity of services. This is because the autism specific symptoms will be denied or not addressed or minimized by service providers. This will create the wrong strategies or clinical interventions for children who have the dual or concurrent diagnoses of autism and intellectual disability.