Saturday, November 12, 2011

Will DSM5 Result In Some Very High Functioning Autism Personalities Losing Their Autism Disorder Diagnoses?

I have a son with a DSM-IV Autistic Disorder diagnosis who is also assessed with profound developmental "delays".  I have expressed my concerns on several occasions about the terms of category A of the new Autism Spectrum Disorder in the DSM5:

A. Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all 3 of the following: [emphasis added -HLD]

My concern has been that people like my son who are currently considered autistic with intellectual disabilities will lose the autism diagnosis with serious repercussions both in receipt of services, and in research and understanding affecting their  disabilities.

With the newest round of "beautiful mind", autism is an advantage not a disorder, activism by autism "researchers" Mottron and Dawson I have wondered again whether the DSM5's new Autism Spectrum Disorder could result in loss of autism diagnoses for several prominent "autism" personalities.  By autism I am referring to the tendency today to refer to PDD-NOS and Asperger's Disorder as also constituting autism along with Autistic Disorder.  Contrary to the activist ideologies and beliefs of Mottron and Dawson persons with diagnoses from any  of these categories will clearly and expressly require impairments in daily functioning in order to qualify for an Autism Spectrum Disorder diagnosis under the DSM5:

"Autism Spectrum Disorder

Must meet criteria A, B, C, and D:

D. Symptoms together limit and impair everyday functioning."

Even without the clear language of the DSM5 requiring impairment of everyday functioning, further divided by levels of severity of impairment, it has always been difficult for me to understand how or why some very high functioning autism personalities ever received a mental health disorder diagnosis  under the DSM-IV when they are obviously very high functioning.  

Autism personalities, including Michelle Dawson, Ari Ne'eman and John Elder Robison have all realized considerable success in life, in university, in self owned business activities, in challenging work environments like Canada Post Corporation, in making legal representations to administrative tribunals and the Supreme Court of Canada, in acting as researchers and as activists promoting their views of autism disorders before government committees. Some have married and raised children while others have maintained professional relationships lasting several years. It has never been at all clear to me why any of them would want a label which reflects a mental disorder under the DSM-IV given their great successes in meeting life's challenges.

With great regularity these autism personalities also appear in various major media productions advocating  their perspectives on what it means to be an "autistic" and, in Dawson's case, advocating against government funding of ABA treatment for autistic children, other people's autistic children.   When the public turns on their television, reads their daily newspapers or browse the internet for news of autism they do not see, with any regularity, the many persons with autism disorders engaging in serious self injurious behavior, wandering from their homes and schools, and into dangerous traffic and waters.  The public does not see the many persons with autism living in group homes, hospitals and psych wards. No, the public sees Michelle Dawson, Ari Ne'eman, J E Robison and other very high functioning "autistics" and they see them over and over and over again. 

The DSM5's new Autism Spectrum Disorder label is actually misleading in so far as the condition could now more accurately be called Asperger's Spectrum Disorder. But it does expressly require, as a mandatory condition for receiving an ASD diagnosis, that Symptoms together limit and impair everyday functioning.

Will Dawson, Ne'eman and Robison be able to demonstrate, despite their well known abilities and successes in various areas of life, that somehow they possess social and communication challenges, along with restricted, repetitive patterns of behavior, interests, or activities and that together these deficits limit and impair their everyday functioning?  

Or will the day arrive when very high functioning autism and Neurodiversity  activists practice some reality acceptance and acknowledge that they do not suffer from an autism disorder, or any other mental disorder,  and that they are in fact capable, competent and accomplished individuals who should not be trying to dictate to parents and professionals alike what it means to have autism ... autism disorder?


MJ said...

All three of the individuals you mention by name make their living from being "autistic" so I doubt that any of them will give up their label willingly. And many of the very high functioning self-advocates have made autism part of their identity.

So I will eat my hat (if I had one) if any of these people relinquish their labels simply because the criteria changed.

Autism Reality NB said...

I suspect you are right MJ. Even pre DSM5 since some of these very high functioning people do not consider themselves to have mental disorders, why do they identify with the autism label, a diagnostic label from the Diagnostic and Statistical Manual of Mental Disorders?

farmwifetwo said...

I have doubts they will be re-dx'd. I've noticed more and more online they don't refer to themselves as have asperger's but autism.

Will find out once the eldest's testing is done what is going on. Won't be until late spring/summer since it's not being done until the end of the school year. Will also ask the child psychiatrist at the time. I suspect they'll remove both ends of the spectrum. Those that are more MR than autism, and those that are more "normal". I read somewhere there is suppose to be a social impairment condition in the V... can't remember were I read that.

John Best said...
This comment has been removed by a blog administrator.
Anonymous said...

The whole "ASD isn't a disorder but a difference" thing never made sence to me. To have ASD, you must be impaired, if you are not impaired, you do not have ASD. It is as simple as that.

The whole thing is ridiculous. (questionably diagnosed) ASD self advocates claim it is a difference whilst autism speaks claims everyone with ASD is profoundly disabled. Can't someone with some brains just come forward and say it is a spectrum, ranging from 'requiring support' to 'requiring very substantial support.'

But, at the same time, people mustn't forget that people can be sucsessful with ASD. Temple Grandin is undebatably autistic, but still a very sucsessful, high functioning, individual.

Roger Kulp said...

itheHello Harold,been away from your,and a number of these blogs for a while.

I have made this point in the past,but I think it's something that needs to be said over and over again.Maybe autism will one day come to mean just what it says in the DSM,nothing more,nothing less.No intellectual disability,no additional medical problems,just the description in the DSM,which I think looks pretty good for "simple" or "garden variety" autism.

And it won't be because neurodiversity activists want to present a pretty picture of autism,it will be because everything else will be explained by some other genetic condition.

Maybe everything else should be labeled as(Name of disorder) with "features of autism".

I am close to the end of a long,and interesting journey.I have finally gotten most of the pieces together,and after too many false leads,that do not explain everything,I have learned I have all the mutations for an unusual,maybe unique,22q11.2 disorder.I still have no idea if this is a deletion,or duplication. That's in my next group of tests in a couple of months.

This would explain everything,even my metabolic disease.As you may recall,treating my metabolic disease,stopped my eloping,and the dementia like episodes that went with it,cold.It may have a medical cause with others,too.

I am in regular contact with people at NIH,and will either be going there or to SUNY in a few months.

As you may know,between 40-60% of those with 22q,also have an ASD diagnosis.The condition can also range from serious intellectual disability,to ADHD in childhood, and can sometimes progress to schizophrenia,which my nonautistic older sister was diagnosed with in her teens,or psychosis.I have a younger sister who was also diagnosed on the spectrum,who has the typical VCFS face.

There are about 200 combinations of medical,and developmental problems associated with 22q,and the list gets bigger all the time.
ADHD is a fairly recent addition to the list.

A big thing with 22q,is autoimmune,and inflammatory disease,that can show up anywhere in the body.This often includes celiac,which often responds poorly to diet.One of my four immune related problems,I have had since childhood.

Do I think a good many of these supposedly vaccine damaged autistic kids,with all these complex medical issues probably have some sort of 22q disorder? It's quite likely,and the parents just need to have an open mind,and never stop looking for answers.

Test results,not what is on some internet blog,that supports your pet theory.

The same goes for intellectual disability.You need to start getting tested for every possible cause of intellectual disability, and put aside any thoughts about how "perfect" your family might be,and don't stop until you have gotten your answers.

Research,research,and more research.Spend every spare minute on the web reading medical journal articles,not antivax blogs.

Think your doctor or therapist is a moron,and spouting a lot of BS? Then become a million times the expert in your child's problem than(s)he is.

It could be some very rare chromosomal disorder,or a new variant of an old one no one has seen before.Either way,finding the cause,will only benefit more children in the future.If your child is really disabled beyond what it says the DSM,it will be something more concrete,and a lot more serious than just plain "autism".Losing services would be the last thing you would have to worry about.

If you don't approve this,I will understand,but you,and every other parent of an intellectually disabled autistic child ought to think about this.