Un-Diagnosing Asperger’s

There has been a loud and increasing outcry about the proposed redefinition of autism for DSM V.  In that redefinition, autism, Asperger’s, and PDD NOS will be combined to form one diagnostic label of ASD – autism spectrum disorder.

In my earlier essays on this topic, I suggested that people’s alarm was perhaps unjustified because I could not imagine health care professionals taking away a diagnosis that was allowing a person to receive useful treatment or therapy.
Yet that very worry seems to be the propagating rapidly throughout cyberspace . . . Indeed, that is exactly what may happen, if what these doctors believe comes to pass:
One psychiatrist (Volkmar) suggested up to 75% of the Asperger population would not qualify for the ASD diagnosis.
Another doctor (Siegel) said she un-diagnoses 90% of the Asperger kids who come to her today.
Conspicuously missing from both those statements is the second part . . . if the psychiatric community proposes to un-diagnose this large population of PDD NOS and Asperger’s, what do they propose to diagnose them with instead?  Something (I’m waiting . . .) or nothing?
If the expectation is that these “former Asperger people” will be diagnosed with something else that will qualify them for a sufficient level of effective services, it’s high time we hear what that new diagnosis might be.  I have yet to hear of any “replacement Asperger’s” for this population.

There is talk of Social Communication Disorder, but I am not aware of any broad array of services that might be associated with that diagnosis, if indeed it is an expected substitute.

Most people are diagnosed with Asperger’s or PDD NOS as kids.  Once the diagnosis is given, those kids receive social skills therapy and other help in fitting in.   Everything I hear from the field tells me the therapies are life changing for the people involved.  When I hear complaints, they usually are that the level of service is insufficient.  Conversely, I have never once heard of excessive treatment for Asperger’s.  Are we now proposing to take those services away from today’s Asperger population and others like them in the future?  What would be the justification for that?
I can imagine no reason except short term cost savings, which benefits health insurers and school districts.   While administrators of those organizations lobby from a different perspective, there is a widespread belief that these groups are already failing to deliver what’s needed, in terms of support services.  Is the DSM definition being perverted into a tool to save these people money when they are not doing their jobs adequately and effectively now? 
I do understand that the surge in ASD diagnoses has placed a huge burden on the healthcare system and school budgets.  If it’s true that a large fraction of ASD kids are improperly diagnosed today, it would stand to reason that the services currently being delivered are not needed.  If so, where is the outcry over waste?  There isn’t any, because it’s universally accepted among recipients that the services ARE needed.
The concept that a large population, who has a disability diagnosis today, might lose that diagnosis and access to the resultant services as a result of DSM changes is both shocking and unprecedented.

When I originally heard about this proposal, my understanding was that the new diagnostic umbrella would cover all those with prior ASD diagnoses. Believing that to be true, I supported the redefinition for the various reasons I’ve already articulated.  Now, I wonder if it’s time to rethink that endorsement.

It seems like the medical and therapeutic community is sharply divided on this issue.  Many still take the stand that I expected, which is that a kid with an ASD diagnosis today, who benefits from services as a result, should be a kid with an ASD diagnosis in DSM V land.  For those who believe we would be right to un-diagnose some large percentage of the ASD population, what would you say to the people you propose to un-diagnose?
(c) 2007-2011 John Elder Robison
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John Elder Robison
John grew up in the 1960s. He knew he was different, but didn’t know why. His early social and academic failures would be signs of disability today, but back then, they were dismissed as laziness or a bad attitude.
John Elder Robison

John Elder Robison

John grew up in the 1960s. He knew he was different, but didn’t know why. His early social and academic failures would be signs of disability today, but back then, they were dismissed as laziness or a bad attitude.

0 thoughts on “Un-Diagnosing Asperger’s

  • February 21, 2012 at 10:15 pm

    @bluejacky@xanga – I work in a public school, therefore there are many departments. I’m an English teacher, so in my very nature as a teacher I do not work in the Special Ed department — where children who have gone through extensive neurological testing with the diagnostician and other professionals learn. 

    I have sat in on more ARD meetings than I can count. I would like to see children with Aspergers treated for their specific needs — not jumbled with all other children who have Autism, Aspergers, Bipolar Disorder, or OCD. In the state of Texas there is a very outlined course of action for these children (in public schools at least, private schools can literally do whatever they want), not flexible to the student, and morally wrong. The children in my class who have severe social problems deserve extra care from myself and the counseling staff, like any other student. 

    These children are in no way entitled to be treated like the children in my co-workers department. Being on the spectrum, many parents feel like they are — and it’s irritating. I have nothing against my kids. I love and respect all of them. Their parents are a very different story. I am hopeful this ‘un-diagnosing’ will pull their heads out of their butt, and from up my throat.

    I’m very sorry if this comment offends anyone. I’m only speaking from my experience.

  • February 21, 2012 at 11:11 am

    @ElRenee – You can see if there is a Yahoo autism group in your area.  That has helped me a lot.  Autisable is a pretty good subscription to start with.  Also TACA is a good resource if you’re interested in diet.

  • February 20, 2012 at 12:41 pm

    Here is where you can see the new diagnostic criteria for Autism Spectrum Disorder:

    I would think the majority of individuals with an Asperger’s Disorder currently should qualify for an Autism Spectrum Disorder diagnosis. Also, people need to realize that this has not been finalized yet and minor changes will probably occur before the DSM V comes out.
    The field tests that have been run show no difference in the amount of individuals who currently have Pervasive Developmental Disorders (Autism, Childhood Disintegrative, Asperger’s Disorder, and Pervasive Developmental Disorder not otherwise specified) and the individuals  who will have the new Autism Spectrum Disorder with the new severity level. The only children who should be affected are the ones who have a Rett’s syndrome diagnosis. Although they should still qualify for an Autism Spectrum Disorder diagnosis with a general medical condition of Rett’s syndrome.

  • February 20, 2012 at 11:52 am

    I am really new to this, can anyone suggest any subscriptions out there that I can read. I just found out my son has PDD-Nos so i feel like a chicken running around with my head cut ott.  Please help! thanks!  I would comment on the article but i need more resources and info to make such an opinion.   Thanks for your help who ever helps me! 

  • February 20, 2012 at 8:50 am

    @GingerAvenger@xanga – Following through on the question, though, what would you say to these children?  Some of them grow up into people like me.  I never got any help at all, I’m older than the diagnostic criteria.  My entire life has been about falling through crack after crack after crack, despite my high intelligence level.  (My social intelligence is pretty low.)

    As I understand autism, from my perspective of Asperger’s and GAF of 50, it’s a more deeply enhanced hardware problem of what I experience.  I can speak, interact, make eye contact.  But I super suck beyond that initial and very shallow criteria for diagnostics.  If Asperger’s is being decided as not being on a particular spectrum of difficulty (gamers probably get this better than anyone), simply because it doesn’t meet more stringent handicap levels, then what is it?

    The way my head works sits on a line between two worlds.  I easily shut down and go in and don’t interact.  I consider myself lucky to be able to come out and interact enough to take care of myself.  My childhood was a tough road, like I said, I never got any help.  People like me rarely ‘make it’ as far as I did without help, and I’m by no means a success story, although I have a college degree, raised children, and held a few jobs.  At my age, people look at me and say I’m so smart and wonder why my whole life flopped into being unable to function enough to maintain forward progress.

    As a teacher, what would you like to see diagnostic criteria do in your work environment?  If you are relieved it’s being changed, then something about policy must be stifling you somehow.  You are on the front lines helping all kinds of kids, you have the most important feedback from your perspective on if this works, how it doesn’t work, why it works or not, etc.  I’d love to hear more than two sentences.

    I personally don’t think this means going backward for people with asperger’s.  We just hate change, especially after we finally saw acknowledgement and then forward progress.  It’s hard to take a step sideways and have faith that ‘undiagnosing’ won’t mean ‘retracting’.

  • February 19, 2012 at 9:37 pm

    I’m really happy this is happening. As a teacher I see children with Asperger’s daily. The children I work with are not by any means Autistic

  • February 19, 2012 at 4:17 pm

    My brother works closely with children on the Autism spectrum. I’ll have to ask him sometime what his opinion is of all the changes and if there is a ‘replacement diagnosis’ on the horizon.


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