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When Is an Autism Diagnosis Not an Autism Diagnosis?

When Is an Autism Diagnosis Not an Autism Diagnosis?

A storm was set off in January after a study by Yale University researchers said that proposed new diagnostic criteria for autism would result in far fewer children receiving the diagnosis. While that might sound like a good thing — the number of children diagnosed with the neurodevelopmental disorder has skyrocketed to 1 in 88 since 1999 when my now teenage son Charlie was diagnosed — many parents and many individuals who are themselves on the autism spectrum strongly objected to the changes.

DSM (for Diagnostic and Statistical Manual of Mental Disorders) criteria affect treatment, research and insurance; they impinge on decisions about whether or not someone will receives therapeutic and educational services.†The proposed new definition would remove the diagnoses of “Asperger’s Syndrome” and “pervasive developmental disorder not otherwise specified” (PDD-NOS). Instead, there would be one all-encompassing category, “autism spectrum disorder” (ASD), and individuals would be assessed as having varying severities of certain criteria, in the areas of social interactions, communication ability and repetitive behaviors.

My son Charlie isn’t affected by the changes in criteria. His diagnosis has always been “autism,” plain and simple; sometimes people have said he has “classic autism.” Some families we know have seen their children’s diagnosis change from “mild autism” and/or PDD-NOS to Asperger’s.†As there is currently no biomarker for autism, a diagnosis is made via the observations of experts, following the DSM criteria.

At the annual meeting of the American Psychiatric Association this week, researchers presented data from an unpublished study that found that the new criteria will not lead to drastically fewer numbers of autism diagnoses. The New York Times says that 300 children were tested (the Wall Street Journal says that over 600 were tested.)

A comment made by Susan Swedo, a senior researcher at the National Institute of Mental Health and head of the working group about the DSM revisions, at a panel on Tuesday seems likely to spark some further controversy. According to the New York Times, Swedo said that

many people who identify themselves as ďaspies,Ē for Aspergerís syndrome, ďdonít actually have Aspergerís disorder, much less an autism spectrum disorder.Ē

The January study had found that as many as 35% fewer children currently receiving services would lose them. The APA had posted the proposed new criteria for autism as well as for other conditions online and has received over 10,500 comments many of them “critical,” says the New York Times. In addition, organizations including GRASP (Global and Regional Asperger Syndrome Partnership) which represent adults and teenagers on the spectrum have raised a huge outcry.

Some critics, especially Dr. Allen Frances, former task force chairman and professor emeritus at Duke University, have argued that the autism criteria have become too broad, leading to autism becoming the latest “fashionable” diagnosis for parents and individuals to seek out.†But if there is no huge difference in the numbers of those diagnosed with the old versus the new criteria, why should they be changed at all, some are asking: “Why mess with it at all?” says Dr. Fred R. Volkmar, director of the Child Study Center at the Yale School of Medicine and senior author of the January study.

Who should be able to say what autism is, psychiatrists and clinicians or those who are on the autism spectrum and those who daily care for those on the spectrum?

As the†New York Times notes, the APA task force is assenting to withdraw revisions for criteria that would have increased the number of people identified as having psychotic or depressive disorders. The new version of the DSM is scheduled for released in May of 2013.

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Photo by Paul Olin (MindFreedom International)

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11 comments

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7:42AM PDT on May 15, 2012

I know several intellectually gifted people (adults and children) who have been MISDIAGNOSED with Asperger's Syndrome. They were 'examined' by so-called Autisim/Asperger's experts who were completely unfamiliar with intellectual giftedness. The so-called experts mistook signs and behaviors common with giftedness as Asperger's. If you read SENG website (Supporting the Emotional Needs of the Gifted), there is a wealth of information about the problem of misdiagnosis of the gifted, as failure to identify the gifted. Here's a link to an article discussing the problem of misdiagnosis and dual diagnosis of the gifted:
http://www.sengifted.org/archives/articles/misdiagnosis-and-dual-diagnosis-of-gifted-children

The chart at the bottom of the page shows traits commonly found in gifted individuals that could be used to misdiagnose a gifted child with a mental illness or a disability.

If a child is poorly socialized, has parents who don't allow the child to interact with people (both children and adults) outside the family circle, the child may display behaviors similar to Asperger's Syndrome. Also, a gifted child who is in an abusive home situation (especially a verbally abusive home) can display behaviors similar to Asperger's Syndrome. Abused children need different types of intervention/treatment than those suffering from Asperger's Syndrome.

Asperger's Syndrome has become 'the disease of the day'. Many healthy eccentric gifted individuals are being labeled with this dia

7:41AM PDT on May 12, 2012

Good news from Autism Speaks, they say that their study finds that the new DSM-V will diagnosis around the same number of people with ASD as the previous volume. Those on the higher functioning end of the spectrum will be included. There will be some changes and it will hopefully include some who weren't diagnosed because sensory issues weren't addressed in the previous volume. Change can be scary; especially when we don't have all the facts, and when stupid things are said by those who are making those changes.

9:57AM PDT on May 10, 2012

Thank you for the article...

8:00AM PDT on May 10, 2012

"Who should be able to say what autism is, psychiatrists and clinicians or those who are on the autism spectrum and those who daily care for those on the spectrum?"

Every time, the decision should be made by the people who can make an objective analysis based on knowledge, training, and experience. Even setting aside questions of self-diagnosis for gain, the experience of the autistic and their carers is of necessity limited to themselves and possibly a relative few others, and is by no means impartial.

Unfortunately, Susan Swedo doesn't quantify her comment about widespread self-mis-diagnosis of Asperger's Syndrome, but the hypochondria induced by online descriptions of symptoms and people thinking "that's me!" is so well-established as to have become a joke.

In addition, even armed with a genuine diagnosis, the autistic and their carers generally have no knowledge of their potential long-term development and needs. By insisting on the maximum accommodation all the time, they may in fact be discouraging development by removing the pressure to adapt, whereas a professional with more experience could advise the carers so as to encourage the autistic one to push themselves and fulfill their potential.

7:57AM PDT on May 10, 2012

When is a label not a label? Labels, though helpful?, can do more harm than good.

5:39AM PDT on May 10, 2012

No sane parent, no matter how label-hungry, wants this label. Dr Frances knows this, he's trying to put out a false claim to justify a way to cut funding for services. It's sad because more services are what's needed.

4:23AM PDT on May 10, 2012

@Leslie S.- Nicely put, by a person who has never had to suffer the heartbreaking news of having an Autistic child. When it comes to disorders and shaving help for those born with disadvantages it is easy for people to say, they don’t need that much help or you are over exaggerating. Until you are one of those parents that has to deal with not just the pain of seeing your child suffer, but also seeing that there are not enough funds to give your child the help they need. In some cases they may have the funds but they don’t have enough qualified therapists to go around (Happens often in smaller towns). Yeah it is fashionably acceptable to decide which good cause we will help, those kids that get that ‘Generic’ Autistic free pass, let’s cut their funds. So what right? Until your child or grand children are born with Autism, then what?

10:27AM PDT on May 9, 2012

Kristina I totally agree with your article. Dr Allen Frances comment that having a diagnose of autism is fashionable has been something I have been saying for some time. I tell my autistic son, Jason, having this diagnose is the in thing like buying a "Chanel" bag. What has happened to our clinicians that they can't properly diagnose people!

8:31AM PDT on May 9, 2012

So many kids are put on the 'autism spectrum', 50 years ago those kids were just 'weird' andearned to function in society without special care....everyone is going overboard with the autism and asbergers diagnosing... Everyone on this planet is unique, pretty soon everyone will be labeled with a disorder....

8:04AM PDT on May 9, 2012

Glad the professionals are willing to listen to those who know best (those who live with or care for someone diagnosed) at least as much as the insurance companies--who are reputed to be the major force leading to even looking at this area of diagnoses since the law now requires mental health equity and they want to avoid paying and transfer the costs onto taxpayers and consumers instead like they used to...

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