Sunday, December 20, 2009

Invisible Autistics: Intellectual Disability and the CDC's New Autism Figures


co·mor·bid·i·ty (kmôr-bd-t
n.
A concomitant but unrelated pathological or disease process.

medical-dictionary.thefreedictionary.com

Intellectual Disability is rarely mentioned in public discussions of autism spectrum disorders.   It is sometimes mentioned dismissively as a co-morbid condition, an unrelated condition which coincidentally occurs in some cases of autism. In fact Autistic Disorder and Intellectual Disability also known as Mental Retardation and Cognitive Impairment, are just different aspects of the- same disorder.

Intellectual Disability is also hidden from public view by a mainstream media (CBC, CNN, the New Yorker, Time, Newsweek etc) that like to focus on the feel good stories with features about persons with Aspergers and High Functioning Autism,  all very intelligent people who communicate very well.  What the "feel good about autism" mainstream media don't like to do is actually visit institutions where some severely autistic persons live out their lives.  What the mainstream media does not like to do is present to the world the truth about the severely autistic , the Intellectually Disabled reality,  of Autistic Disorder. 

Professionals don't expressly mention Intellectual Disability as a factor in diagnosing autism disorders. High functioning autistic persons and persons with Aspergers for whom "autism" is a way of life, something to belong to, don't like to associate themselves with Intellectual Disability.  They prefer to associate autism, and thereby themselves, with Einstein, Van Gogh,  Mozart and every other historical figure of exceptional talent or ability.

All these groups scarcely mention autism and intellectual disability in the same breath and when they do they refer to autism as an occasionally coexisting but unrelated condition.  All are  hiding  the truth. All are  obliterating from public understanding of autism disorders the reality that autism, as in actual Autistic Disorder, and Intellectual Disability,  also know as mental retardation, or cognitive impairment, are in fact related aspects of Autistic Disorder.

Intellectual disability, mental retardation or cognitive impairment, are not listed as express diagnostic features in the DSM definition of autism disorders although it is mentioned by implication in the definition of Aspergers disorder.
  1. no significant delay in language development
  2. no significant delay in cognitive development, self-help skills or adaptive behaviors (other than social interaction)
The reason the DSM found it necessary to mention that there must be an  absence of any delay in cognitive development and language development before an Aspergers Disorder diagnosis can be made is that  so many persons with Autistic Disorders in fact have serious intellectual and communication  deficits. It is these factors which distinguish Aspergers from Autistic Disorder.

When an Ari Ne'eman or an Alex Plank purport to speak on behalf of autistic people and say We Don't Want to be Cured they are speaking on behalf of people who often have severe intellectual and language difficulties  that persons with Aspergers do not share.  They want to speak on behalf of these people because they identify with the word "autism" but they don't want to be associated with Intellectual Disability, Cognitive Impairment or Mental Retardation.



The number of persons with Autistic Disorder and Intellectual Disability  is extremely high.  They are far too high for the two conditions to be characterized as separate, coincidental, unrelated disorders.  This is clear from the recent CDC autism prevalence report which reported that between 29.3 to 51.2% of children with Autism Spectrum Disorders also had an Intellectual Disability:

"2006


From 29.3% (Colorado) to 51.2% (South Carolina) (overall average: 41.0 %) of the children identified with an ASD also had an intellectual disability (an IQ ≤70, at the sites that had test results on intellectual ability for at
least 75% of the children identified)
."
 
The range of 29.3 to 51.2% refers to children with Autism Spectrum Disabilities who also had an Intellectual Disabilty defined as IQ less than 70%. The ASD includes children with Aspergers Disorder who, by definition, do not have intellectual disabilities.   If  children with Aspergers are excluded  from the calculation then it is likely that children with actual Autistic Disorder and Intellectual Disabilities will range somewhere from 60% to 100%.

As startling as that last estimate may sound it is consistent with previous estimates of the number of persons with Autistic Disorder and mental retardation, intellectual disability or cognitive impairment.  The Canadian Psychological Association in its autism brief to the Canadian Senate Committee examining autism issues, Autism Brief to the Standing Senate Committee on Social Affairs, Science and Technology November 9, 2006, stated that the number of persons with autism (Autistic Disorder) and Intellectual Disabilities (Cognitive Impairment) was 80% :

"Cognitive impairment is present in about 80% of persons diagnosed with Autism and general intellectual functioning is most often below average. Persons diagnosed with Asperger’s Disorder have average to above average intellectual functioning."

The CPA 2006 estimate that 80% of persons with Autism (Autistic Disorder) also have intellectual disabilities is consistent with the  new CDC range of estimated intellectual disabilities of persons with ASD which, once adjusted by removing Aspergers Disorder, places the CPA estimate right in the middle of the CDC range of 60-100%.

It is time to end the prejudice against autistic persons with intellectual disability. It is time to end the intellectual dishonesty of pretending that it is just a coincidence that so many persons with Autistic Disorder also have Intellectual Disabilities. It is time to stop treating persons with Autistic Disorder like invisible autistics.  Their intellectual disability is part of their autistic disorder, a very serious, disabling part which makes their lives much different than the high functioning media stars who wrongly pretend to speak on their behalf. 

It is time to stop hiding the truth about autistic disorder and intellectual disability. It is time to start including the Invisible Autistics, the intellectually disabled persons with severe Autistic Disorder, in public discussions of "autism".






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8 comments:

Astrid said...

Even though I do not see enough evidence to support the notion of autistic disorder + ID as a specific subtype (I think new research might establish this subtype in the future), I do agree with you that the reality of autistics with intellectual disabilities should not be overlooked. I, for one, do not think it matters whether you see these conditions as distinct or belonging together as one condition, in that no matter what we still have to acknowledge that there are quite a few autistics with intellectual disabilities, and they have different needs from people with either intellectual disability or autism alone. I think the autistic advocacy movement should not exclude people with intellectual disability from its focus, simply because there is no reason to separate out a person's different disabilities. However, can you actually point me to any official opinion from an autistic advocacy organization or its representative that excludes autistics with ID from the scope of autistic advocacy (apart from the Dutch adult autistic advocacy group, but you will not be able to read their exclusionist positions anyway, it is the reason I won't be a member by the way)? If you could, please provide the source, since I have misquoted autistic advocates by taking their quotes directly from your blog before. I am all with you in criticizing autistics who do exclude people with severe or multiple disabilities, but I'd like to base my criticism on the facts.

Autism Reality NB said...

Astrid

When 80% of persons with Autistic Disorder also have an Intellectual Disability they are not unrelated conditions and it is not a coincidence. What all organizations do is what you have just done, pretend that the two are totally unrelated conditions.

As for exclusion it happens every time someone mentions low IQ, cognitive impairment or the negative, harmful behaviors that accompany autism and ID. ASAN and other organizations protest the presentation of "autism" in a negative light.

Why don't you show me where ASAN or any other autism organization devotes space on their sites to the numbers of persons with Autistic Disorders who are Intellectually Disabled.

Tony Tamer said...

The research shows one huge difference between autism and other intellectual disabilities: Intensive intervention can dramatically raise an autistic child's IQ, but it does not have the same effect on other disabled children. If the cognitive deficit is merely a comorbid impairment, the IQ gain must be a result of BOTH the intervention and the autism. In other words, autism is actually the opposite of a learning disability; it's a learning ENHANCER! No wonder why all these self-diagnosed self-proclaimed autistics are so exceptionally intelligent. May be they're a superior species!

Autism Reality NB said...

Astrid

I speak for my son as a legal matter and as a matter of common sense. I live with him, care for him, ensure his needs are met. I love him. Neither Ari Ne'eman nor any internet stranger has the right to speak on his behalf, period. One of the major failings of the Neurodiversity movement and ideology is the failure to respect parental and family rights and responsibilities, the consistent effort to speak on behalf of other people's children.

Nor does Ari Ne'eman, nor Alex Plank, share common experiences, common realities with persons like my son with severe Autistic Disorder. No person with Aspergers suffers from language delay or intellectual delay. If they did they would not receive an Aspergers Disorder diagnoses.

Do you REALLY not understand the importance of intelligence and communication in every aspect of human life. These are fundamental aspects of human life. When some people are fundamentally impaired and disabled in these areas it is absurd to suggest that people who do not share their deficits in these areas have enough common experience to justify pretending to speak on their behalf?.

Roger Kulp said...

Harold,
Not to belittle intellectual disability,I think it's very important,but I would be curious how you might rate certain developmental problems in autism.Is profoundly delayed walking,toilet training,or motor development,or inability to write with a pencil,as bad as speech delay? What if you had all of the other developmental problems,but did not have problems verbally,and only had isolated learning disabilities?

How would all of this combined with behavior like eloping,self-abuse,or destroying property,as I have had,compare with intellectual disability,or being nonverbal ?

I would like to know what you think about this.

Astrid said...

Harold, I never said you can't make decisions for your son. Neither did Ari. Neither of us, nor any neurodiversity activist I know of, doubted yoru love of and devition to your son. As I explained, however, it is not about an individual family's right to make decisions on behalf of their child at this point. At this point, it is about national policy that will impact every autistic.

Autism Reality NB said...

Astrid it would be helpful if Ari and other persons with Aspergers and HFA did not appear before mainstream media telling the world that autistic persons do not want to be cured.

In general it would be helpful if a person as High Functioning with Aspergers as A.N. is would try to make it clear in his many media appearances that there are many very low functioning persons with Autistic Disorder who have to deal with far greater challenges and life impairing realities than him.

LIVSPARENTS said...

The two real interesting little tidbits that I'll throw out surrounding the IQ section of this study are that, if you look at the stats, the rates of increase of all these 'higher functioning' kids is greater than those with intellectual disabities:

http://www.cdc.gov/mmwr/preview/mmwrhtml/ss5810a1.htm#tab5

In short, the rate increase of the under 70 range between 2002 and 2006 was 35%; while the over 85 and the 'borderline' categories went up 72 and 90% respectively.

I am careful to lend too much weight to the IQ numbers, since it's not clear what constitues an 'under 70' IQ rating state by state, since the ability to test learning disabled children (especially spectrum kids who definitionally had difficulty in communication) is probalmatic.

The data implies though, that between 2002 and 2006, we now have a larger percentage of the ASD population with fewer intellectual disabilities. I agree we need to acknowledge that there are large percentage on the spectrum with intellectual disabilities (many with severe intellectual disabilities like your son or my daughter); but shouldn't we also acknowledge and push that being on the spectrum does not mean you are necessarily INTELLECTUALLY disabled, since close to 60% may not be (one of which is my other daughter)?

Being part of a community often means you have to understand all aspects of it, without necessarily agreeing with it. It's easier for me to see both sides of the fence. My hope and aspiration for the next decade is that I can get both sides closer to working together, because disability rights should be something we can all agree with...Best to you and your son and may we all see great strides in 2010...