Sunday, April 04, 2010

The New Autism Spectrum Disorder (NASD) in the DSM-5: Autism Minus Intellectual Disability

The CDC web site introduces Autism Spectrum Disorders with some basic autism facts, including facts about Autistic Disorder and Intellectual Disability, which are being ignored by the American Psychiatric Association in its proposed revisions to the Pervasive Developmental Disorders (which will now formally be called Autism Spectrum Disorder) section of the DSM-5.  One simple, but very important,  fact which the APA will hide is the fact that  many people with Autistic Disorder, the classic "autism",  also have an Intellectual Disability.

It is these people with Autistic Disorder and Intellectual Disability who have the most severe symptoms.  They will not typically author internet blogs, preside over corporate boards, conduct research, hold media interviews or mingle with Washington DC politicians and bureaucrats.  Those diagnosed today with Aspergers and mild PDD-NOS will be the faces of the New Autism Spectrum Disorder in the DSM 5 a transition which is already well underway with the Hollywood, the Mainstream Media and, in President Obama's administration, appointment of a hard line anti autism cure person with  high functioning Aspergers to a high profile disability council position. The classic instances  of Autistic Disorder with Intellectual Disability will be fully excluded from the New Autism Spectrum Disorder.

"ASDs are “spectrum disorders.”  That means ASDs affect each person in different ways, and can range from very mild to severe.  People with ASDs share some similar symptoms, such as problems with social interaction.  But there are differences in when the symptoms start, how severe they are, and the exact nature of the symptoms.

  • Autistic Disorder (also called “classic” autism)
    This is what most people think of when hearing the word “autism.”  People with autistic disorder usually have significant language delays, social and communication challenges, and unusual behaviors and interests. Many people with autistic disorder also have intellectual disability.
  • Asperger Syndrome
    People with Asperger syndrome usually have some milder symptoms of autistic disorder.  They might have social challenges and unusual behaviors and interests.  However, they typically do not have problems with language or intellectual disability.
  • Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS; also called “atypical autism”)  People who meet some of the criteria for autistic disorder or Asperger syndrome, but not all, may be diagnosed with PDD-NOS. People with PDD-NOS usually have fewer and milder symptoms than those with autistic disorder.  The symptoms might cause only social and communication challenges.

The CDC statement that "many people with autistic disorder also have intellectual disability" is consistent with other authorities and studies including the Canadian Psychological Association  2006 brief to the Canadian Senate which stated that  "Cognitive impairment is present in about 80% of persons diagnosed with Autism and general intellectual functioning is most often below average". The CPA reference to autism excludes Aspergers which is referenced separately. The statement is also consistent with the CDC's 2009 studies which found that "Data show a similar porportion of children with an ASD, also had signs of intellectual disability averaging 44% in 2004 and 41% in 2006".
  The APA is of the view that the Pervasive Developmental Disorders should be grouped into one Autism Spectrum Disorder, nominally distinguished on grounds of severity of symptoms.  In fact though the intellectual disability which characterizes many instances of Autistic Disorder, of "classic" autism, will be separated from the Autism Spectrum which will alsoreduce its focus to "social communication" and "fixated interests and repetitive behaviors".  Significant language delays will not be major diagnostic criteria for the New Autism Spectrum Disorder in the APA's Brave New DSM 5. There will be no reference, even by necessary implication to Intellectual Disability in the DSM-5's New Autism Spectrum Disorder.

It is easy to speculate about the reasons motivating the APA in seeking to remove the Intellectually Disabled, low functioning, classically autistic from the New Autism Spectrum Disorder (NASD).  The NASD will make it impossible to use epidemiological studies to demonstrate any vaccine autism connections since the very definition will have changed.  This will come in handy after the use of thimerosal laced vaccines in many areas during the great 2009 Swine Flu Panic.

Life will also be easier, and their consciences less ruffled, for those "clinicial psychologists" and researchers who focus almost exclusively on working with persons with High Functioning Autism and Aspergers.  On the research side those High Functioning Autism experts like Dr. Laurent Mottron who has published dozens of research papers involving subjects with High Functioning Autism, Aspergers and Savant qualities will now be able to truly claim to be autism experts without anyone mocking them for their obvious reluctance to study low functioning, intellectually disabled, severely autistic subjects.

Clinical psychologists will find their success rates working with autistic subjects soaring when their autistic subjects all carry the New Autism Spectrum Disorder diagnosis. Those more difficult low functioning autism cases will be relegated to the dustbins of history ... and forgotten completely in residential and institutional care facilities.  Clinical utility takes on a whole new dimension in the era of the New Autism Spectrum Disorder

It will also be handy for the Ari Ne'eman's and other very high functioning persons with Aspergers who will now be able to speak with at least a little bit of credibility on behalf of persons with the New Autism Spectrum Disorder. This is a wish granted for Ari Ne'eman, Amanda Baggs, Michelle Dawson and Alex Plank. These persons with HFA and Aspergers are high profile opponents of attempts to cure people, even other people's children, of their autism disorders.  Cementing their status as spokespersons for the New Autism Spectrum Disorder will take some pressure off of the health authorities, including psychiatrists, and "autism" researchers who do not want to spend their time and resources seeking cures for autism disorders.

In the  Brave New World of the DSM-5 everyone will be happy except the severely disabled, low functioning persons with Autistic Disorder and Intellectual Disability, the "classic" autistics ... and the parents and family members who are the only ... the ONLY ...  ones fighting on their behalf.  Members of the APA will be busy slapping each other on the back and congratulating themselves for solving the Autism Crisis in the way they know best ... by defining it away.   

The New Autism Spectrum Disorder has arrived.


farmwifetwo said...

I have trouble with your push to demand that Intellectual disability must also be part of severe autism.

My son's psychometry report (Feb 2010) reads: reading Gr 3.5 (age appropriate), comprehension Gr 1.5, IQ btwn 60 and 70.

60-70 is a 2 to 3 yr old. He is not 2 to 3 yrs old in behaviour, or academics. He's overally about a 5 to 6 yr old with the speech level of a 18mth to 2yr old, and an actual age of 8.5yrs.

IQ measured alone is not an indication of how smart a person is or how much they can learn. But, gov'ts use it to decide who gets what services. By demanding that severe = Intellectual disabilities you have children like mine dealing with a system that assumes they can never learn and therefore refuse to teach them at all. "Well he's severely autistic and therefore mentally retarded so why should we waste our time and services"... I've heard it before from parents mostly. Luckily, I have proven that theory wrong to the educators we have dealt with so far.

I am pleased that the 2 are now separate. They are separate here (school board) as well. I have spent the last 4mths getting "Developmental Delay" added to our IPRC. Unfortunately, I have opted to move him to special ed, for many reason's and I'm not truly happy about it. We weren't forced out, I triggered the IPRC process, not them. We are off to see a 10 child, multiple exceptionalities class on Apr 14th. Goal for us is to teach him curriculum at his comprehension level, yet keep him mainstreamed in classes he can do independantly and enjoys like music, phys-ed and computers. I had to add this b/c #1 - I wanted him in a slow learners, low behavioural class (BIL teaches one in another board) not a PDD one and #2 - he doesn't qualify for a PDD class since he can learn in a regular room with support, is low sensory and low behavioural.

Dual diagnosis' are not "taboo"... we now have one and if it gets us what we need... that's what we do.

Unknown said...


I am not pushing to have Intellectual Disability added to severe autism. It has always been a part of it and it is being removed, starting with the DSM IV and finishing with the DSM-5. I can see no good reason for doing so.

Do you think it is just a coincidence that approximately 80% of persons with actual Autistic Disorder are also cognitively impaired or intellectually disabled?

I am more concerned with people being offended that intellectual disability is a part of autism.

I am more concerned with people hiding the truth about autism and intellectual disability.

Anonymous said...

What do you mean by "actual Autistic"?

Unknown said...

I have a question for you from another father with a child with autism to another. My son was diagnosed with autistic disorder years ago, but I wasn't very much involved in his life until now. My wife and I divorced when Austin was 1, she re-married, moved to another state, and thanks to my cancer, she won full custody of him until last month for reasons I do not want to speak of.

Now after almost 5 years of not much interaction with my son, this is all new to me as I am currently remarried myself living with my wife and newborn twin daughters! I knew he was diagnosed with autism but now learning about his other diagnosis's such as cognitive impairments.

Somebody mentioned to me if he has an intellectual disability, my sons iq is on the lower end, but now I'm confused what is the difference between intellectual disability and cognitive disability?

Forgive me as although my questions seem uneducated, I'm trying to learn now about a world I never got a chance to be apart of.

Anonymous said...

Our child's diagnosis (for what it's worth) is, and always has been, "actual" autism (as distinct from PDD-NOS and Aspergers), and he is one of the 10% that does not have an intellectual disability. I realize that you advocate from the perspective of your son (which of course you should), but it is hard not to be offended by your persistent statements to the effect that unless an intellectual disability is present, it's not "actual" autism.


Unknown said...

Jenn (Anonymous 9:57 AM):

You claimed that I have persistently stated:

"it is hard not to be offended by your persistent statements to the effect that unless an intellectual disability is present, it's not "actual" autism."

I have never made any such statement. I have said ... persistently ... that 75-80% of persons with Autistic Disorder, not autism, but Autistic Disorder, hae an intellectual disability. That leaves at least 20-25% of persons with Autistic Disorder diagnoses who do not have an intellectual disability.

I too am offended ... by people who find it offensive that intellectual disability could be so closely tied to autistic disorder.

Ian MacGregor said...

FW2, your son's IQ is at least 2 standard deviations below the mean. This is the definition of low-functioning autism. It does not mean your child is incapable of learning, nor does it mean that he will be denied services. It does mean that he is part of of a large population in which autism has led to significant intellectual disability.

The worry is that treating of autism as a difference and not a disorder will drastically curtail monies devoted to research toward a cure and also possibly curtail educational programs as well. Children will simply be baby sat at schools rather than educated.

I am extremely proud of the fine young lady my daughter has become, the leaps she has made in oral comprehension, and in her behaviors. She is greatly enjoying life. Her laughter is the nectar of the gods.

But she would have all the above and much different and better future if she did not have autism.

She still has significant autistic behaviors. bites herself, and needs constant supervision for her safety.

A cure would be the best thing for her and people like her. IF autism is not presented as the horrible disorder it truly is, then people will be less likely to donate.

Your son is following a fairly common pattern. Their are two parts to reading, one is decoding the written symbols into sounds, the other is understanding what they mean. It is not uncommon for those with autism to be able to do the former and not the latter. This does not mean he will never understand, but that he will need a great deal of help from you and others to get him to do so. Much more than if he were not autistic.

I don't think its right to associate IQ with an age. Developmental age is based in what your child can do and not his learning skills.

Naomi Edwards said...

Hi, I have decided to check out your blog because you joined mine, I decided to watch a video of Conner and I was shocked because my son Michael is always on You tube and he is forever watching Conner!!! I couldn't believe it..I had to tell you. He is such a sweet boy and I love his voice, apparently Michael does too. Naomi