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Will New Diagnostic Criteria End the “Autism Epidemic”?

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Having a different disorder, with a different diagnostic code, can mean a huge difference in the services you qualify for based on your insurance company. A recent Los Angeles Times series about autism noted that some parents have sought a more “severe” diagnosis for their child, on the theory that their child can then qualify for a greater range of services from school districts.

While some criticize such as the opportunistic efforts of parents “gaming” the system, I would underscore that these  point to the very real need for services for those with autism and other diagnoses. The New York Times cites the case of a 37-year-old New Jersey woman whose mother underscores how receiving a diagnosis of Asperger’s Syndrome has given her daughter access to disability services that have been  life-changing. My teenage son Charlie has always had a diagnosis of autism, plain and simple, and meets the criteria for the new proposed definition of autism spectrum disorder. But a number of my friends’ children have diagnoses of PDD-NOS or Asperger’s and are, understandably, fearful about what the new criteria will mean as far as them continuing to receive valuable services and supports that make it possible for them to go to school amid peers, among much else.

What’s In a Diagnosis?

Dr. Volkmar himself says that the new “autism spectrum diagnosis” in the DSM-V will be focused on those considered “classically autistic” and on the more severe end of the spectrum, such as my son. The “more cognitively able” will face diagnostic confusion and a loss of services and supports, with potentially disastrous results. According to Dr. Volkmar, “the proposed changes would put an end to the autism epidemic,” in the sense that many now diagnosed with autism would no longer be considered to be so. Some psychiatrists and other experts have argued that autism has become too broad and vague a diagnosis to the point that is it “fashionable,” while others defend the current expanded definition of autism as a sign of our greater understanding of autism and of its being more common than earlier thought.

A  brief survey of the DSM’s different versions over the years since the first edition was published in 1952 reveals that it might be better to think of it as a work in progress, albeit with monumental impact. Psychiatry and psychology have not always existed and neither has the DSM. What we need to focus on are the potential real-world consequences of the latest changes to the definition of autism in the DSM: Will individuals in need of essential supports and services lose these simply because of a change in criteria? Will the new criteria truly provide much-needed clarity about who is autistic, about what autism is?

Related Care2 Coverage

Is There an Autism Epidemic? Not Exactly, But…

Did the DSM Create an Epidemic of Asperger’s?

Are Too Many Children Being Diagnosed WIth Special Needs?

The DSM Gets an Upgrade

 

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43 comments

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11:20AM PST on Jan 18, 2014

My 14 year old son has Autism.

12:09AM PDT on Oct 13, 2012

"DSM4 gave autism purchase by introducing a milder form that is close to the extremely populous boundary of normality. Then autism took flight on the wings of definitional diffusion, internet contagion, financial incentive, and naïve interpretation of epidemiological results.
The autism “epidemic” is set to spread further starting in May 2013, when the next revision of the diagnostic manual (DSM 5) will be published. The DSM 5 definition of an “autistic spectrum” will cast an even wider net, capturing many people now considered to be normal or to have another disorder" Dr. Allen Frances, former chairman of the current DSM4, Professor Emeritus of Psychiatry
(regarding DSM5) "And there is a real danger that shyness will become social phobia, bookish kids labelled as Asperger’s and so on.’ Simon Wessely, Institute of Psychiatry, King's College, London
“Unlike medical diagnoses that convey a probable cause, appropriate treatment and likely prognosis, the disorders listed in DSM4 [and ICD-10] are terms arrived at through peer consensus.” Tana Dineen, Psychologist

10:27AM PDT on Mar 16, 2012

i will stand up and fight and b a voice for those who cant b their own.... thank you soooo much Leslie G. for sharing my petition i have psychiatrist who have sign and know and understand what these changes will not cover Def need more ppl to step up and sign my petiton again ty ty soooo much Leslie G. for sharing its very much appriciated by me, my family (2 of my 4 children are autistic)

3:22PM PST on Feb 26, 2012

Thank you for the interesting article. To Linda C. I just signed and shared your petition and was sad to see there were not many signatures on it. Any one with concern please sign Linda C.'s
petition at http://www.the petitionsite.com/1/Autism-and-other-medical-disorders-dsm/
Thanks!

6:48AM PST on Feb 25, 2012

I feel very fortunate that neither of my daughters is autistic, but I've met mothers of autisic kids and they have spent a lot of time, effort and money trying to help and understand their kids. For good or ill these new standards just seem like another issue many parents will have to deal with.

8:28AM PST on Feb 24, 2012

I'll bet $$ is behind it.

8:14AM PST on Feb 24, 2012

I agree unfortunately there is always an underlying agenda, I'd hazard a guess it has to do with money. In schools it always has to do with money. The standardized testing for instance is a big money maker for a select few!!! It will be hard to get rid of. Politically it's going to bevery enticing to go with a diagnosis that will significantly reduce what it costs to fund special ed. in schools.

8:12PM PST on Feb 17, 2012

"Gaming the system"? As if there were a plethora of fantastic services already available that these 'greedy' parents were seeking to exploit! The mental health services in this country are absolutely abysmal, and once that child ages out and turns the magic age of 21, be prepared for next to nothing. Just who specifically is behind all these altruistic diagnostic changes, I have to wonder... could it be a way of cleverly disguising cutting services to this needy group. As to whether children with Autism/PDD actually exist, you don't need to be a psychiatrist or need any scale to measure. Just walk into any classroom and observe. It is eye-opening.

1:10PM PST on Feb 7, 2012

these changes will effect appx 1.5 million ppl please go to my link http://www.thepetitionsite.com/1/Autism-and-other-medical-disorders-dsm/
and sign the petition the move signatures i get the better voice i will have please help stop those changes i have 2 children that it will affect all help and support is appriecitated please also pass it along to other you know lets make more ppl aware of the situation

4:24AM PST on Jan 27, 2012

Does this mean that people who were diagnosed with Asperger's now have to be re-evaluated to see if they still meet the criteria.

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