Friday, June 04, 2010

CDC Autism Expert: 40% of Persons with an Autism Spectrum Disorder Also Have an Intellectual Disability

I have commented on several occasions about the fact that many persons with Autistic Disorder also have Intellectual Disabilities. That fact is a reference to Autistic Disorder as it currently exists in the DSM-IV and excludes, by definition, the many persons with Aspergers Disorder one of the Pervasive Developmental Disorders now commonly referred to as Autism Spectrum Disorders. I have pointed out that the Canadian Psychological Association has referenced studies indicating that 80% of persons with autism ... excluding Aspergers .... have an intellectual disability or cognitive deficit. I have pointed out that two surveys conducted by the CDC (2004 and 2006) indicated that 41-44% of persons with Autism Spectrum Disorders,  also have intellectual disabilities.   Since the Autism Spectrum includes all those with Aspergers who, by diagnostic definition are not intellectually disabled, the CPA and CDC  approximate figures are consistent: approximately 80% of those with Autistic Disorder are intellectually disabled and approximately 40% of those on the entire "spectrum" of ASD's are intellectually disabled. 

The reactions by SOME persons with High Functioning Autism and Aspergers and SOME parents of children with High Functioning Autism and Aspergers to this information have not always been polite.  Some have claimed that somehow my use of these reported facts is wrong although I have never seen a coherent explanation for that claim.  In a recent interview in the CMAJ Dr. Marshalyn Yeargin-Allsopp, a medical epidemiologist at the CDC,  confirms the information set out above.  Dr. Yeargin-Allsopp commented on the expansion of the autism definition changes that have taken place since the 1980's:

"But the autism umbrella has since widened to include milder forms, says Dr. Marshalyn Yeargin-Allsopp, a medical epidemiologist at the CDC. For example, it now includes Asperger syndrome, where the sufferer is socially impaired, but experiences typical language development.

Another difference between past and present autism diagnosis involves the presence of intellectual disabilities, adds Yeargin-Allsopp. During the 1960s and 1970s, the vast majority of those diagnosed with autism had an intellectual disability but today, only about 40% have one."
  
Autistic Disorder is the current diagnostic category (although that will be changed in the DSM-5) which would include those who would have been diagnosed with autism in the 1960's and 1970's.  That is the category where the vast majority as Dr. Yeargin-Allsopp states also have intellectual disability.  It is only the inclusion in the  broad definition of "autism"  of Aspergers Disorders, which  by definition includes no one with intellectual disability, that lowers the percentage of persons with autism who also have an intellectual disability from the 80% figure to the 40% figure. Those with Autistic Disorder are still in the 80% range of "co-morbidity".

It is crystal clear that these authorities assert that 80% of persons with Autistic Disorder are also intellectually disabled. By pretending that these conditions are "co-morbid", unrelated, coincidental conditions we are ignoring the obvious relationship between them.  We are ignoring the fact that classic autistic disorder is a form of intellectual disability. 

The fact that 80%, even an unspecified "vast-majority", of those with Autistic Disorder also have an intellectual disability  is not a coincidence.  It is time now to acknowledge that fact before the DSM-5 arrives to further expand the definition of autistic disorder and further  obscure  the harsher realities of autistic disorder as we know it today. 

9 comments:

Lisa Jo Rudy said...

Harold - not sure where you're going with this post. Are you suggesting that a new "umbrella" definition of autism spectrum disorders should include intellectual disability? If so, of course, the umbrella would shrink considerably...

In addition, I have to note that the tools typically used to assess IQ are very questionable relative to people with verbal challenges/delays. To assess IQ in a person with an autism spectrum disorder (or any verbal processing disorder) you'd really need to apply an appropriate and standardized IQ test.

Lisa Jo Rudy

Get Out Explore and Have Fun with Your Child on the Autism Spectrum

Autism Reality NB said...

Lisa Jo

Why do I have to be GOING SOMEWHERE WITH THIS?

I am speaking the truth about Autistic Disorder and about the autism spectrum as it has come to be called. These truths are rarely mentioned in the mainstream media, be it Hollywood movies, television series, magazines or daily newspapers. Nor are they mentioned AT ALL on neurodiversity oriented autism blog sites.

I have cited extremely credible sources for the facts I assert which are that 80% of those with Autistic Disorder have an intellectual disability which represents 40% of those on the entire spectrum.

You have cited no credible authority to refute the Canadian Psychological Associaton or CDC sources which I rely on. (You can also check versions of the IDC diagnostic manual).

I have not yet read your book on the autism spectrum. I hope it includes an honest acknowledgement that the "spectrum" includes those with Autistic Disorder a large number of whom have Intellectual Disability.

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Have a great one!

farmwifetwo said...

But again Harold... What's the point to the rant...

Do you want those with Autistic disorder like my youngest to be written off from day 1 with "well he's just retarded anyways so why should we bother teaching him". That'll defeat all the work you've put in to push for ABA to be paid in full. The gov't's will say "why bother", let's just toss the money into facilities and raise them like animals... Which is what they use to do. Or do you rather listen to the Ped, the special ed dept, the Psychometrist and something the Teachers and children have all discovered...

Geez, just b/c he has difficulty with speech, flaps, spins and has crappy social skills... there's a brain in there... Maybe we should teach it b/c maybe someday they will be more than just "retarded".

All of these same professionals have told me to ignore the IQ test, which was in the 60's and look at the other's that show he's learning and doing very well at that.

Otherwise... what's the point to the rant?? Except to put your kid in a room in an institution the rest of his life.... then why did you bother to attempt to teach him in the first place?? Or is that the point to this rant... Or is something coming up with highschool and it's got you peeved.

You'll find most parents, who's children score in the 60's of an IQ test simply look at it, shrug and keep going. We're back pedalling... mine is learning in a regular class, with full support, OT and SLP, but from Gr 4 to 6 is headed for special ed. WHY?? B/c the teacher he's going to pedals speech and comprehension... 1 word, 3 words, she's not fussy... We want to be one of those that hits puberty and talks... not mands, not bits and pieces of joint attention that we currently have... but talks easily, I want to unbend, unbroken that break... 1 word, 3 words, I too am not fussy.

As the psychometrist said "get him to talk, catch up his comprehension... who knows how far he'll go"....

He's not "retarded", he's "autistic"... "retarded" only gets him funding and placements. Autistic, gets him educated. Unlike some... I'm not writing mine off at 8 as it's appeared you have at 13... There's a lot of living and learning still to do btwn now and the day we die.

Ian MacGregor said...

The present criteria for Asperger's includes:


From DSM IV ...
(IV) There is no clinically significant general delay in language (E.G. single words used by age 2 years, communicative phrases used by age 3 years)

(V) There is no clinically significant delay in cognitive development or in the development of age-appropriate self help skills, adaptive behavior (other than in social interaction) and curiosity about the environment in childhood.

The lack of delay was the major criteria for separating autism and Apergers. In an indirect way
the present definition includes intellectual disability.

However many children who were cognitively delayed are able to make up that ground while still maintaining their autistic traits. They then cannot be told apart from someone with Aspergers. The DSM V answer is to label them and their previously diagnosed Asperger's counterparts as autistic. This in effect removes the criteria of intellectual delay from an autism diagnosis.

This does not mean one cannot be delayed and autistic, but it does mean that when one hears a child is autistic, one can longer assume the probability of an intellectual disability. Thus autism
becomes far less serious a disorder.

As a child ages their intellectual capacity becomes more apparent. No one believes that having an intellectual disability means the child is incapable of learning, or on occasion to be clever. However once the child gets to be a certain age dramatic breakthroughs become less and less likely. It is highly likely person will need 'round-the-clock' care and after his parent's are gone, who will provide and will the autistic person be treated in a loving way.

My daughter has low-functioning autism. That does not stop us from having fun on hiking trails. However as the criteria for autism evolves the proportion of children like my daughter in the autistic spectrum will shrink, and efforts to address their problems will shrink as will the money for research.

I don't want my daughter to be forgotten, and I want research leading to a cure to be stepped up. For herm for all those like her, and for those not yewty born

Autism Reality NB said...

Rant FW2? Was your comment also a rant?

The point of my comment is simple. Approximately 80% of persons with Autistic Disorder have an Intellectual Disability. The point is to tell the truth about that fact and not hide it in shame or fear.

I never figured you for some one who would be afraid to discuss the truth FW2 but apparently you are afraid of the stigma of intellectual disability.

My son has Autistic Disorder with an Intellectual Disability. I love him. I am proud of him and I speak the truth about his condition. I believe that hiding the truth does a huge disservice.

Katie Wright said...

Unfortunately Marshalyn Allsopp is not a good source of information, nor is she familiar w/ the true range of the spectrum.

Allsopp's autism presentations are dated and horrible (I have seen them)and still debate whether or not autism is really increasing. She has zero knowledge about environmental triggers, regressive autism or the potential of the nonverbal population. Why she is still employed at the CDC is unfathomable

I think every parent knows their own child's capabilities best. How I wish the CDC was staffed with real innovators and brilliant scientific minds who were engaging in researching that would help our kids.

Anonymous said...

I think you raised a VERY important point here - namely - "Where are we going with this?" As a therapist, every time I work with a child, the question at the back of my mind is "What is our final goal here? What are we preparing this child for?"

Typically, in my experience, the goals set by families and educators are for normal functioning, eventually. There is often limited focus and/or preparation for what happens if this is not achieved. Where will the student go and how will it be funded? How will we ensure a good quality of life, disability and all? What functional skills will they need?

Too often, it seems these questions are not addressed until far too late in the game, because there is always an assumption that the child will recover and lead a normal life as an adult. Then, when this is not the case, families are faced with the crisis of a future they did not plan for.

Of course, some children do progress to a level where they will function independently, and I would never want to dismiss this or underestimate a child's potential. It is important, however, to be realistic about possible outcomes and to prepare for them.

usethebrainsgodgiveyou said...

I think you have figured it out, Mr. Doherty. It centers around the 1994 inclusion of Aspergers. Seems so simple.

The most vulnerable will be the first to lose services. I wonder if that's been a part of the plan all along.

Just as an aside, my son had a 79 IQ at age 4. I would suspect it has doubled. I count myself lucky that he is so mildly afflicted. I guess life gives us the lessons we can handle, and I'm kind of a lightweight.