Thursday, August 19, 2010

What Autism Spectrum? Research in Autism Spectrum Disorders Has Often Excluded Children with Severe to Profound Intellectual Disabilities

 The recent "autism" brain scan study from the UK is a notorious example of an alarming reality in the world of autism research - the severely autistic are excluded from autism research. In that study autistic persons with intellectual disabilities were intentionally excluded and 16 of the 20 participants in the study actually had Aspergers diagnoses. The study press releases should have more accurately hyped the potential of the brain scan process involved to assist in diagnosing Aspergers. Of course that distinction will be moot once the DSM5 reduces the Pervasive Developmental Disorders to one Autism Disorder, expands the number of very high functioning persons who will be considered "on the spectrum" and removes those with Autistic Disorder and Intellectual Disabilities from the "spectrum".

The efforts of the DSM5 committees to remove intellectual disability from Autistic Disorder are assisted by studies like the brain scan study which already exclude the vast majority of persons with Autistic Disorder who also have intellectual disabilities.   That study is far from unique as indicated in the comments of well known autism researcher and DSM5 panel  member Catherine Lord Ph.D. in Social Policy Report, Autism Spectrum Disorders Diagnosis, Prevalence, and Services for Children and Families:

"Variability, at least in terms of IQ and ASD symptoms, has not been as significant a factor when comparing across research-recruited samples. Numerous studies have combined samples from different research labs where distributions were very similar. However, research in ASD has tended to use overwhelmingly White, middle to upper middle class samples, and has often excluded children with multiple disabilities and/or severe to profound intellectual disabilities". [underlining added -HLD]

Aspergers Disorder will become the New Autism Spectrum Disorder in the DSM5 which will emphasize social and communication deficits but will do away with the implicit references to intellectual disability in the current DSM. The vast majority of those with Autistic Disorder today, the 75-80 % of those with Autistic Disorder who also have intellectual disabilities will, as in the research studies which have led to the New Autism Spectrum Disorder in the DSM5, simply be excluded.


Autism Mom Rising said...

Harold, thank you for continiously raising awareness about this important point. This refusal to break the individuals down into sub groups for research and the exclusion of the severely autistic is having devastating consequences on those individuals. My son is a perfect example. At 3 he was so high functioning that the practitioner who dx'd him came back three times before should would give him a dx. She did not want to get it wrong as he was so high functioning. Starting at age 4 he fell apart: aggression, lost toilet training ability. Doctors kept telling us, "oh, that's just the ebb and flow of autism". Nobody recommended an EEG. In fact, he did not get one until it occurred to us to ask when the child was almost 7. Turned out he had entire brain mulit-focal Petite Mal seizures. Again we had to push for an over-night EEG, nobody offered it. That showed that he also has something called Landau Kleffner Variant. Landau Kleffner SYNDROME, which is rare, is full blown seizure spikes in the temporal lobe areas in the brain over night. Landau Kleffner Variant, which is not rare, especially in Autism, is abnormal electrical activity (not full blown spikes) in those same areas. LKV will act similiar to LKS in terms of there being regression into middle childhood, it just won't be as devastating as LKS. It was devastating enough though, as my once HFA son, was severely autistic and in a diaper by age seven (doing much better w/treatment though)

What gets me, and here is my point in bring this up, the neuro tells me they see this pattern quite a bit in autistics who have Petite Mal seizures and that 30% if them make dramatic improvements on Prednisone (my son being one of those). Yet, so many kids with Petite Mal seizures, those seizures never get discovered because the behaviors are put off as "just the Autism" then they get put on an antipsychotic.

This kind of kid is clearly a sub group and would present quite differently than an Aspergers person.

Astrid said...

Harold, ad nauseam repetititions of false statements doesn't make them correct. In DSM-IV, your son would also need to be diagnosed with mental retardation in addition to autistic disorder for it to be recognized that he has an intellectual disability. In DSM-V, he will be diagnosed with (severe) autism spectrum disorder and intellectual disability. Your only point seems to be that those peskky Aspies shouldn't be on the autism spectrum, regardless of the lack of evidence for a difference between AS and HFA (and the DSM doesn't recognize the word HFA, so that would be autistic disorder).

I agree with you that normal variation and subclinical autism shouldn't be in the DSM, and I also think mor eattention should be paid t non-cor esymptoms such as behavior problems (that are more common among those wiht intellectual disabilities).

However, I think it's important that ID and ASD be separate. Not because I don't want to associate with ID - I don't care -, but to be able to understand the complex interactions between autism and ID. Simply having a diagnostic category that excludes those with ID (ie. Asperger's) won't acheive that.

Autism Reality NB said...

Astrid if you are going to accuse me, or anyone, of making a false statement, you should indicate clearly what the false statement is and back it up. You have done neither.

You claim that it is important that intellectual disability and autism disorder be kept separate? Why? There is no good reason to ignore the fact that 75-80% of those with autistic disorder also have intellectual disabilities. That per cent figure is too high to be coincidence. There is a real connection involved.

You often object to any mention of intellectual disability in connection with autism.

The issue highlighted in this post, and I cited Catherine Lord, who you may have heard of, to the effect that those with ID are often excluded from autism research. This exclusion results in misrepresentation of the autism spectrum when, even with Aspergers included 41-44% of persons with ASD's also have ID's. That problem will be even worse once the DSM5 kicks in.

As for your "pesky Aspies" comment save that for the Neurodiversity forums please.