Monday, May 23, 2011

Asperger's is the New Autism: No Intellectually Disabled Allowed in the DSM-5's New Autism Spectrum Disorder

"the autism umbrella has since widened to include milder forms, says Dr. Marshalyn Yeargin-Allsopp, a medical epidemiologist at the Centers for Disease Control and Prevention. 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."

Dr. Marshalyn Yeargin-Allsopp, Canadian Medical Association Journal,CMAJ • July 13, 2010; 182 (10). First published June 7, 2010; doi:10.1503/cmaj.109-3274  


Dr. Yeargin-Allsopp's description of the diminution of autism's vast majority, those with intellectual disability, is noteworthy today as we await the commencement of the DSM-5 era and the complete elimination from any autism diagnosis of persons with intellectual disabilities. That accomplishment will be achieved by the DSM-5's New Autism Spectrum Disorder definition and diagnostic criteria which expressly exclude an ASD diagnosis in instances of general developmental delay:


The New Autism Spectrum Disorder in the DSM-5 will eliminate any debates over the exent of intellectual disability amongst those with autism spectrum disorders.  The new definition will complete the process begun in the DSM-IV of diminishing the rates of ID amongst those with autism by changing the definition of autism to exclude those with intellectual disability.   The formula is simple and straight forward.  To be diagnosed with autism a person must meet all 4 criteria, A, B, C and D.  Criteria A requires the presence of "persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays".   If a person suffers from "general developmental delay" that will account for persistent deficits in social communication and social interaction across contexts and the person will not meet the mandatory Criterion A and will not  receive an autism spectrum diagnosis under the new DSM-5.

General developmental delays is a reference to the DSM-5 diagnostic category of Intellectual Developmental Disorder (IDD) which is described as including a current intellectual deficit and a deficit in adaptive functioning.  IDD is further described in two of the mandatory criteria for meeting and IDD diagnosis  as including deficits in general mental abilities. IDD mandatory criterion B refers expressly to impaired functioning in areas of daily life including communication and social participation.  An IDD diagnosis then would account for deficits in social communicaiton and social interaction and preclude an Autism Spectrum Disorder diagnosis under the DSM-5


 The exclusion of an autism diagnosis for persons who are generally developmentally delayed is a substantive change from the DSM-IV  which did not exclude an Autistic Disorder diagnosis in persons who suffered from  general developmental delay, intellectual disability or mental retardation:


The exclusion of persons with Intellectual Developmental Disorders from the New Autism Spectrum Disorder does have a precedent in the DSM-IV.  It is found in the DSM-IV's Asperger's Disorder which states in Criterion E that "there is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills".  And there it is "no cognitive development delay" from the DSM-IV Asperger's Disorder criteria becomes not accounted for by general developmental delay in the DSM-5's Autism Spectrum Disorder.   Asperger's becomes the New Autism in DSM-5 World.

Autism Speaks has long been aware of the APA intention to remove persons with intellectual disability from consideration for autism spectrum disorder diagnoses. Autism Speaks rarely mentions intellectual disability as an autism concern.   It has already been busy presenting Asperger's to the public as Autism  with the promotion of the careers and influence of John Elder Robison and Alex Plank.

Autism Speaks also helped fund the Korean "autism" prevalence study of Roy Richard Grinker who has been busy recasting Asperger's as autism and who went looking for "autism" amongst Korean students who functioned well in Korea's highly structured school environments.  No intellectually disabled were included amongst Grinker's findings of  large numbers of previously unknown autistics.  Of course Professor Grinker, the APA and "Autism Without Intellectual Disability Speaks" will have to readjust their autism prevalence numbers once the DSM-5 officially takes effect.  They will have to revise their autism rates downward to reflect the removal of persons with DSM-IV Autistic Disorder and intellectual disability from the DSM-5's Autism Spectrum Disorder.  Asperger's is the New Autism. 

19 comments:

usethebrainsgodgiveyou said...

Well, perhaps they'll be able to cure this mental disease. They keep looking for something.

This is unbelievable to me.

Anonymous said...

A semantic Catch-22 ?
Moves by careerists to gain influence.
Who benefits from reducing the number of Autism diagnoses ?

I'm not a parent of an autistic child but this smells very dirty.

Anonymous said...

As an autistic person, this looks like a step in the right direction towards better understanding understanding the way we think and moving away from classifying it as a disease. Asperger's and autism have never been separate conditions. It's called the autism SPECTRUM because it IS a spectrum, not simply clear-cut categories.

Autism Reality NB said...

Anonymous 11:11 thank you for expressing your opinion. Unfortunately you did not address the issues I raised in my comment. The Canadidan Psychological Association estimated in a 2006 submission to the Canadian Senate that 80% of what are often called classic autistic persons also have intellectual disabilities. CDC expert Yeargin-Allsopp indicated that that vast majority of classic autistics who were also intellectually disabled were reduced to 40% by the DSM-IV addition of Aspergers. The new definition in the DSM-5 removes those with ID or IDD as it will now be called from the autism spectrum completely.

usethebrainsgodgiveyou said...

I still can't wrap my mind around the reasons for this. How I wish I could have been a mouse in the corner. Truthfully, who makes these decisions?

Is this final?

Look here, I'm so glad I finally decided my son is LD, specifically dyslexic before this came down the pike. Won't have to be a participant when the stuff hits the fan.

Anonymous said...

As the population expands (1:38 the latest!) the professionals are going to have to rethink their collective position. When a Dx is applied to all of everyone it is called the "norm" and there are no more billable hours involved.

Anonymous said...

This should not have come as a shock to anyone. There needed to be a diagnosis for those without intellectual disabilities who manifest the symptoms of autism.

I think this division is correct, though the history of the condition where for years 8% of the sufferers were intellectually disabled makes me think the term is being misappropriated and should remain with those who have ID.

This raises a question about those with ID who want to participate but cannot due to their mental capabilities, and those who don't care to participate at all.

As my daughter has matured she has become much more social around the house. A few of her autistic traits have been diminished, but certainly not all. It is her ID which primarily affects her day to day living.

Many children make the leap from low to high functioning autism which becomes indistinguishable from Aspergers. They are no longer or much less intellectually disabled than before. Therefore the DSM V autistic traits become the most obvious problem.

I have always been pro cure, and soon be proclamation my daughter will be cured of autism. She'll sim[ply have ID. However should her ID prove treatable, then her autistic traits may come to the fore. In other words curing her ID would result in her classification as autistic in the new world order.
Logically that seems absurd.

Also, I believe that the developmental conditions which produce a person with Asperger's also produces a person with low-functioning autism.
Perhaps a developmental switch was left on for a little too long in a person with Aspergers but was left on for an even longer time in the person with LFA.

In other words LFA and Aspergers may have a shared etiology. So when it comes to corporal health they are closely related. But their manifestation on a person's mental development once a certain age is reached is very different.

Chi

trainspotter said...

What's the old expression about the devil being in the details.

I have a brother with 'Aspergers' and a daughter with 'classic autism'. It only takes five minutes at our family Christmas dinners to see just how different their challenges are... it's like saying a fish and duck are the same species because they both like water! Sure, I understand why autism is considered a spectrum (for all those who think I'm being "narrow minded") but slapping an extreme label on people who will spend a life time fighting the stigma of being "disabled" is not helpful - neither is removing an important label (or altering it) for those who are disabled to thin out the numbers of those who are eligable for appropriate services. Because at the end of the day, 'appropriate services' and 'appropriate education' are where this decision matters.

Sadly, my brother (who's married with children and has never taken a government handout) would be insulted to be categorized with my daughter, and she too, would probably have something to say if she could speak for herself! Then again, maybe my daughter is no longer considered autistic (even though her diagnosis was once considered 'textbook') and they won't have to worry about this next Christmas!

usethebrainsgodgiveyou said...

Autism Speaks had something to do with that Korean Study. The "who's who" of autism, Frith/Baron-Cohen/Attwood knew it was coming.

I want to scream so loud the whole world can hear me...quit pathologizing kids who are just wired different, but not disabled. Oops, too late...

Anonymous said...

What about the individuals who are not "low" or "high" functioning. Those that are significantly impaired by either autism or ID, but have one or the other? What about individuals like Carly or Sue Rubin for example.

Textbook cases of "classic autism" thought to be mentally retarded, but with the chance of technology proved everybody wrong. Neither two have an ID, but still are severely impaired by autism. Where would they fit according to some families posting on here?

What about the individuals who have an ID, show traits of autism, but no where near enough to ever be considered "classically autistic"?

What about all those individuals in between the high and low or the "exceptions to every rule"? We must realize this is an autism spectrum, and just because one family has a child with aspergers and the other has a child with very severe autism, doesn't mean that's all there is. There are a lot of equations and individuals who fall between that whole each of the end spectrum, some who may benefit from both parties views.

I'm a mother of a severely autistic child and a child with mild-moderate autism. My sister was just recently diagnosed two years ago with Aspergers and has a child with moderate autism. They all have their own unique challenges. Yes put a person with aspergers in a room with somebody with severe autism, big difference. Put them in a room full of all different levels of autism, then you see that maybe there is a reason for this DSM change, and exactly why they are eliminating ID out of it. To not sound like a broken record, but as example, Carly Fleischmann. She might be a reason why they changed this new DSM so it doesn't automatically mean all autistic individuals have an ID.

We do a lot of autism events, and my children go to a special school for just autistic individuals, we've as a family seen every side of autism, the good, the bad, the very ugly, and then the gifted, and everything in between. There is more to the autism spectrum, then just the very low and the very high!

Judy

Autism Reality NB said...

Judy/Anonymous 4:12 am

You make a number of different arguments, make assumptions and ask several questions. Among your statements is the argument that the DSM has been changed so that "they all don't automatically have ID".

All autistic persons have never, at any time, been identified as having ID. The vast majority of those with classic autistic disorder have been described by the APA and the CDC as having intellectual disabilities. Aspergers has always, by definition, NOT included persons with cognitive deficits or intellectual disabilities. The point of my comment is that the Aspergers exclusion of persons with ID has now been applied to ALL autism spectrum disorder diagnoses.

The new Autism Spectrum Disorder in the DSM5 is the current Aspergers. Persons with classic autistic disorder and ID will no longer be diagnosed as having an autism spectrum disorder.

trainspotter said...

You make some good points, Judy... but we're talking about two different things here. I'm not disputing that autism is a spectrum (it is, and it's a very wide one). I too, have people in my family (and social circles) that represent the entire gambit of the spectrum. The reason I didn't mention the "ones in the middle" is because they aren't affected by this issue. For those in the middle, the fight for education, acceptance and support goes on as usual. For those with Asperger's, the battle becomes shedding a label that screams "disability", when some of them function better than some "neuro-typicals" I know. Then you have the low-functioning, who are tossed out and given a new label that may be completely inaccurate(not to mention one that will cut off any chance for them to get reasonable services).

I'm glad you mentioned Carly and Sue... they are great examples of why this whole thing is a problem! How do you reliably measure something like ID in a child who is severely affected by autism? My daughter with severe autism has been given the label of ID (she has never done well in assessments- something to do with it upsetting her daily routine). In a half hour exam my daughters fate was sealed. We were told she no longer qualifies for autism services- and forget appropriate education! Now here's the crazy part... she's teaching herself to read and spell! What? She can hardly talk, will run into traffic, and measures in the less than 1st percentile on a cognitive exam. Maybe one day she'll be a Carly, maybe not. But wouldn't it be a shame to toss out those in the group who aren't able to fight for themselves- and for what? To make the paperwork easier.

I want to take back my statement that those in "the middle" of the spectrum aren't affected...not yet! They may be affected in 10 years when 'ADHD' is added to the autism spectrum and it's their turn to be tossed out and into spec ed classrooms with low expectations. If you pull the string sooner or later the button falls off.

Claire said...

Harold, is this not terribly disconcerting? "Persons with classic autistic disorder and ID will no longer be diagnosed as having an autism spectrum disorder." What diagnosis will these children receive? What services will they be able to access? I am taken aback by the whole thing.

usethebrainsgodgiveyou said...

Say, sir, take a look at this. I brought you up to a neurologist and you may want to enter into this discussion.

http://crackingtheenigma.blogspot.com/2011/05/what-is-pdd-nos.html?showComment=1306532817134#c6313163331023795883

usethebrainsgodgiveyou said...

P.S. With the new definitions, there is a possibility that neither your son or mine will be considered autistic. Mine was PDD-NOS, which is too high for the "new autism".

By the way, good lawyers catch!

Mamita Ive said...

I wonder if this new definition will translate into better support services of all people within the autism spectrum disorder. Regardless of severity, there are steps to be taken to ensure a better quality of life for people with autism. And it seems to me the more 'normal' they deem a person on the spectrum, the less support they receive, often with disastrous consequences.

Aspie mom with Spectrum kids said...

It seems to me that this is mostly a step backwards, as in the past many with Autism were simply labeled "MR" - DOn't throw rotten tomatoes please, it was the term used then. I have a child in her 20s who had "MR" services but under DSM 4 would likely have been PDDNOS or Autistic - did get early intervention and was NOT ID...in fact graduated with honors from University at both the BA and MA level.

Anonymous said...

As a mother who has a son with Asperger's, I would like to start raising awareness or raising money for organization for children with Asperger's. My son would so love to play certain sports, but parents are such perfectionists when it comes to sports; I know I would have to constantly explain to other parents that he has aspergers (I experienced this when we put him in hockey). I would love to get him involved in sport with other children like him. Maybe a bowling team or some other activity where they could be with each other speak statistics or Pokemon, and then hit the ice, ball, or bowl.

Unknown said...































I have a 12 year old son who most definitely has Aspergers and a concurrent intellectual disability. He also has a mood disorder. In Germany, where he lives, he is regarded as having Autism, and I dont know what effect the DSM5 will have. How convenient it must be for those with Aspergers and no ID, the "success stories" like Robison, to exclude the "messy" folk with ID. In some countries it might possibly exclude some folk with what we call ASD from assistance to them and their families/carers.