Monday, December 31, 2012

Autism 2012: Disaster for the Autism Spectrum's Intellectually Disabled


"Autism Spectrum Disorder
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, and manifest by all 3 of the following:"

Autism annual reviews have been published by a number of sources most of  which ignored or mis-characterized the most important autism event of 2012.  The most important event by far and the one with the most negative implications for those who actually suffer from autism symptoms was the APA approval, on  Saturday, December 1, just before the holiday season, of the DSM5 as it is now written including the new Autism Spectrum Disorder.  The new ASD will preclude future autism diagnoses for those most severely affected by autism symptoms: those with moderate to severe intellectual disability. 

I have written many times about the express targeting for exclusion of those with intellectual disabilities.   I have been virtually alone in my criticism of this exclusion but I stand by my objection to that exclusion.  It is reprehensible.  It helps  insurance providers and governments that seek to reduce provision of autism treatment and benefits.  It helps those academics and researchers who are building careers researching every trivial idea they find fascinating without helping or bringing anyone with an autism disorder any closer to treatment or cure of the symptoms which in fact restrict their ability to function in the real world.  They are now free to conduct autism research without the need to include difficult to work with intellectually disabled, severely autistic children and adults among their subjects. It helps those persons with High Functioning Autism and Aspergers, their parents and other loved ones, who feel stigmatized by association with low functioning, intellectually disabled autistic children and adults.

Intellectual opposition to the direction the DSM5 is taking autism did arise in 2012 in Rethinking Autism: Variation and Complexity by Professor Lynn Waterhouse. She has articulated in a very comprehensive analysis, backed by learned authorities on every point, the fundamental problems with the new streamlined, simplified version of autism.  The title summarizes her arguments succinctly: autism is in essence a group of symptoms characterized by variation, heterogeneity and complexity.  The unified, simplified DSM5 ASD ignores that heterogeneity.  Every parent, academic and clinician who has repeated Stephen Shore's caution,  now a cliche, "if you've met one person with autism, you've met one person with autism" knows that autism is heterogenous, varied and complex.  The DSM5 however, contrary to all research and real life experience, pretends otherwise.  The DSM5 ASD is a false step, a road block to the understanding of autism disorders, autism symptoms.  Debates over whether autism is increasing, and what factors are involved with causing autism will be muddied again for another generation by the redefinition of autism.

The moderately and severely intellectually disabled who otherwise display the social communication and restrictive, repetitive criteria of the DSM5's New Autism Spectrum Disorder, will not be included in the new autism diagnostic era. They will be relegated to the Intellectual Disability group which will receive very little research attention or dedication of resources.  After all it will be deemed wiser to concentrate resources, including treatment and cure research resources, on those for whom successful results are more likely .... just as the distinguished, open minded, intellectually conflict free and oh so compassionate members of the DSM5 autism committee have done in their pre-Christmas gift to the intellectually disabled, severely affected members of the pre-DSM5 autism spectrum.  

5 comments:

NoetiCat said...

Doesn't this just mean the social and communication issues must be beyond those exhibited by people with "just" intellectual disabilities?

There is a big difference between someone with autism and learning disabilities, and someone who "only" has learning disabilities. I don't see anything in the criteria that changes or tries to disprove that.

Autism Reality NB said...

No, it means that if a person is intellectually disabled they will not receive an autism disorder diagnosis even if they display ALL the social communication examples of mandatory criterion A and ALL the examples of mandatory criterion B.

Sandy Crux said...

Harold -- You and I have had disagreements about this before.

In Ontario, there is little funding for autism disorders when compared to intellectual disability, apart from pre-schoolers.

In fact, the only reason my son (officially diagnosed as PDD-NOS)is in a supervised independent living program is because he is also considered intellectually disabled, as is his wife, my daughter-in-law.

But, it was a struggle because he is borderline in some areas, meaning he would have fallen through the cracks of social services.

Fortunately, his ID in terms of daily living (dealing with money, making decisions) showed up.

So, whether it is special programs, housing, group homes, whatever, in the long run you will be glad that the ID becomes primary.

In Niagara, we have Contact Niagara. Every single service or program re ID has to go through them. Mind you, we waited five years. But, since the chief criteria is need, an adult like Conor would get help sooner.

Does NB not have something similar?

For my own psych training we were taught that if any patient had a primary diagnosis of ID, that was it. Everything else was secondary.

For example, if I found a client had learning disabilities but with a generalized flat score (eg., say compared to someone with a two year discrepancy in reading decoding or math calculation) he or she would have been considered ID but with LDs, as opposed to primary LD.

Meaning, this whole issue is about labels. And, in the long run in terms of lifelong, the ID label will get Conor more help than the autism label would.

Meaning it is not a disaster for those with an ID and autism spectrum disorder for the ID to be removed from DSM-5. Notice I simply put the ID first.

Anyway, things will work out for Conor I am sure!!

I was going to write about all this on my blog but obviously it is too raw and emotional an issue at the moment.

Autism Reality NB said...

Hi Sandy yes we have disagreed before. In New Brunswick I advocated, with other parents, for early intervention and autism trained education aides and resource teachers. Until the election of the Alward/Carr government we enjoyed considerable success. The autism diagnosis is key to receiving these specific services.

It is not just though an issue of specific services as important as that issue is. The fact is not all persons with ID display the deficits in social communication and repetitive persistent behaviors, self injury and sensory issues that are involved with autism. Nor do they always demonstrate the seizures and epileptic comorbidity that accompanies so many with autism particularly when ID is also present with the autism.

There is no justification especially given the historically substantial relationship, see La Malfa study, between autism and ID, described by the CDC's Dr. Marshalynn Yeargin-Allsopp as autism's vast majority prior to the addition of Aspergers to the "spectrum" in the DSM-IV.

Research will now completely exclude the ID from autism research and will result in less impetus to find treatment for them.

Roger Kulp said...

There is a big difference between someone with autism and learning disabilities, and someone who "only" has learning disabilities. I don't see anything in the criteria that changes or tries to disprove that.

Learning disabilities and intellectual disabilities are not the same thing.I say that as someone who has an autism diagnosis,and multiple learning disabilities,but who is not intellectually disabled.There is quite a difference.

That said,there is definitely a move to portray autism as something positive,mild,and no big deal.Witness the press around Alexis Wineman.

From the article

"Finally, at age 11, Wineman was diagnosed with pervasive developmental disorder and borderline Asperger's syndrome".

The DSM doesn't list a lot of stuff under autism,learning disabilities,developmental delays,metabolic or immune disease,self injury,hearing and visual impairments,and all of the other fun stuff so many of us have to deal with.

It may be that the Alexis Winemans and Ari Ne'emans of this world are the true autistics after all.We have yet to have the debate we should be having about just what is and isn't autism,and maybe we ought to.Certainly if you have a disease that can be detected by blood tests,be it a gene,an autoantibody,or something metabolic,it isn't autism,it's "features of autism".The science is moving pretty quick,parents,teachers,and all those who provide services need to catch up.Science has moved on since the DSM-III was published in 1980.

Asperger's or PDD is so different from ID,that there is very little research you can apply from one to the other anyway.Self abuse can any number causes.I know in my case my head banging was related to seizures.Seizures that responded to folinic acid.


I know nothing about how things work in Canada.Are you saying that just a mental retardation,or intellectual disability diagnosis means denial of services?That seems a little hard to believe. Maybe you could post some stuff about this.