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About that DSM 5 story

January 24th, 2012 · 8 Comments · Easy marks, Research

The Diagnostic and Statistical Manual (DSM) is sometimes called the Bible of modern psychiatry. First published in 1952 as DSM I, the reference book lays out the diagnostic criteria for most psychiatric conditions and illnesses.

The current DSM IV was published in 1994, then revised in 2000. And now it’s due for a rewrite. The DSM 5 (they dropped the Roman numerology) is expected to be released in May, 2013. Now this may not be as big news as, say, a Duran Duran reunion tour, or Kate Middleton’s anticipated baby bump, but it’s still creating a buzz among those who advocate for persons with autism. That’s no small constituency – 800,000 or more children and young adults have an autism spectrum diagnoses. When you add up all the parents, grandparents, aunts and uncles, you have an army of confused and anxious people.

The buzz kicked off last week with some news out of Iceland – an unpublished study looked at how proposed changes to the way autism is diagnosed might affect rates of diagnosis, and possibly treatment and services. The prognosis could be grim, according to the New York Times:

Proposed changes in the definition of autism would sharply reduce the skyrocketing rate at which the disorder is diagnosed and might make it harder for many people who would no longer meet the criteria to get health, educational and social services, a new analysis suggests.

The autism advocacy movement is a diverse crowd, and the report predictably set off howls of protest from some quarters. “The American Psychiatric Association did something very similar to this back in 1973 when they voted at their annual convention to remove homosexuality from the DSM,” was a comment left on one website. The implication, I guess, is that’s why we don’t have gay people anymore.

The silliness is endemic. An anti-vaccine guest columnist slipped by the gatekeepers at TheHealthCareBlog.com, to tie her cause to the proposed changes.  “So why exactly is the APA changing what we call autism? How is this going to benefit children?” wrote the “media editor” for Age of Autism, a fringe anti-vaccine website associated with Jenny McCarthy’s Generation Rescue. “In the last 20 years, we’ve seen a 600 percent increase in a serious neurological disorder.  No one at the APA is able to tell us what causes autism, how to cure it, or how to prevent it, but they seem happy to again play with the definition.  We need to ask why this is happening.”

The autism news beat is a target-rich environment for any reporter willing to wade into the  esoterica of psychiatry, epidemiology, and special education law. That’s one reason most autism coverage falls flat. In a time with when your typical Action News health reporter is underpaid and overworked, it’s not surprising that most autism coverage suffers from news attention deficit disorder. Autism reporting, much like autism itself, falls along a spectrum, from interesting and informative on one end, to shallow and meaningless on the other.

So how to cover autism, or more specifically, the impending rollout of how autism is diagnosed in DSM 5? Here are some tips.

Don’t assume an autism epidemic. The anti-vaccine movement pushes the epidemic angle to create fear, uncertainty, and doubt. But there is no evidence for an epidemic, and the increase in diagnoses over the last 50 years can be largely explained in ways that don’t presume a global conspiracy to poison children. “The high rates of prevalence and diagnoses today are instead evidence that scientists are finally counting cases correctly,” says Dr. Richard Grinker, author of Unstrange Minds (Basic Books, 2007). “This is a good thing, not only for the US but for the world, including cultures that have only just begun to learn about autism.” Grinker’s website is a great place to learn how the definition of autism has changed over the last six decades.

Be skeptical of any paper, especially ones that are unpublished. The New York Times article was largely based on an unpublished study by Dr. Fred R. Volkmar, director of the Child Study Center at the Yale School of Medicine . Volkmar once sat on the American Psychiatric Association panel that is writing DSM 5. He resigned, and may have an axe to grind with the APA. Beware of personal agendas. Dr. David Kupfer, chair of the DSM 5 committee, has publicly expressed concern about the “cost” of so many people (children) qualifying for mandated services.

A disability by any other name is still a disability. Federal special education law, specifically the Individuals with Disabilities Education Act (IDEA), doesn’t rely solely on the DSM. “That (autism) diagnosis may have some bearing, but it’s not the sole determining factor,” says Sonja Trainor, a senior staff attorney at the National School Boards Association. A diagnosis is not the same as a determination about whether a student needs special education.

Autism is currently defined by a “triad of impairment.” They are, simply put, deficits in socialization, narrow interests, and impaired communication. But the proposed criteria emphasize deficits in social interaction, along with restricted, repetitive patterns of behavior, interests, or activities,  with far less emphasis on communication deficits. This leads to concerns that a child whose communication deficits eclipse his/her other issues may be passed over. But the argument makes little sense. Even if a child slips through the DSM 5 text, he/she could still qualify for services under a different diagnosis, such as communication disorder. Again, what matters is not the label, but whether a child’s disabilities are severe enough to warrant special education.

The IDEA Act was written for children. For adults with autism, services do depend on diagnosis, and that varies by state. Adults with autism are an under-reported story. Those who push the autism epidemic angle prefer to keep it that way.

Choose your sources carefully. Not every story has two legitimate sides, especially when the scientific evidence is heavily weighted to one side. Develop trusted sources who are familiar with those who are competing to have their voices heard. Case in point: the unpublished study that triggered two New York Times stories is based on the same data set which was exploited by anti-vaccine publicist David Kirby, who used the numbers to claim that “one-third of autistics recover!” This was supposedly evidence that the shadowy autism cure industry was on to something.

But the devil is always in the details. The children involved in that data set, which was collected from phone interviews, didn’t have confirmed diagnoses. Their parents merely answered questions such as “Has any medical person ever told you your child has an ASD?” and “Does your kid have an ASD now?” So the impressions of a school nurse, coupled with a parent’s incomplete understanding of a very complicated disorder, could easily lead to a wrong diagnosis. And when the diagnosis is corrected, years later, some will call it a “recovery”, or even a “cure.”

If I had to guess, I’d say the Volkmar study will stay unpublished. It’s too late to say that about fear mongering news accounts.

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Cross-posted at ReportingOnHealth.org

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8 responses so far ↓

  • 1 vmgillen // Jan 30, 2012 at 11:30 am

    The problem lies in the APA serving as sole gatekeeper to services. . . yes, special ed. is supposed to serve the individual child, not a diagnosis. However, the process is far more negotiable when the diagnosis is with the “approved” framework (I remember the times before autism was recognized for determining spec ed eligibility). Furthermore, the DSM determines insurance coverage – which means, interestingly enough, that it also determines if APA members will get paid. Again, I remember when the APA was 99 & 44/100% analytical/cognitive. The organization did not care a fig about Autism. Then the market opened up – and suddenly they’re experts, wanting a piece of the action. Not.

  • 2 Laurentius Rex // Feb 12, 2012 at 12:56 pm

    I had an interesting conversation with Fred Volkmar at an autism conference some years ago, when I had been criticising him for constructing the whole notion of Asperger’s wotsit, as a disorder in the last edition of DSM. You can see why he is not pleased with the outcome now.

    Thing is I have even seen Lorna Wing bending in the wind like a reed wherever the publicity blows now.

    One thing I did get Volkmar to admit was that the decisions as to what gets in and what gets out are political, they are not matters of fact.

    Of course I have the same reasons for not objecting that Volkmar has, in that I submitted a paper of my own during the consultation process suggesting that the distinctions were arbitrary and should be abolished.

    Nobody wins though because the real devil in the details is in the severity criteria, but then that’s politics, a nice side show over what we call this or that while the real damage goes unnoticed.

  • 3 Cindy Facteau // Mar 9, 2012 at 9:08 pm

    Hi, I happened upon your site by way of another site I’d seen you comment on (I am always intrigued by the opinions and ideas of others, even if they might differ from my own). For the most part, I’m not so much about the business of “labels” (I have two amazing boys, ages 14 and 4 respectively, who are incredible and completely normal…they’re both impacted by ASD, but I’ve always sought to parent them in such a way that they are neither limited nor defined by the scope of a diagnostic code), however, in certain states, such “labels” are essential when it comes to obtaining services that they need in order to maximize their full potential.
    That being said, the reason I wanted to comment is because I’ve been on this journey for a number of years now, and have dedicated much of my spare time to helping other families. I’m not about passing judgment or allowing ideological differences to detract from what the real issue should be, which is caring for these individuals and providing them with the best we have to offer them.
    This is probably why it saddens me so much to see such animosity and negativity directed at people, parents, and organizations who may not be in step with your way of thinking, but certainly care just as passionately and deeply as you do for this community.
    Kim Stagliano, who is the editor of AoA that I believe you were referring to with your “anti-vaccine” comment, has stated publicly that she is most certainly NOT anti-vaccine. Just because an individual may not fully agree with the rate, schedule, etc. does not necessarily make them “anti.” I know several people who have their children on alternative vaccine schedules. Everyone parents differently, and we all do so as our hearts and parental instincts dictate, and our experiences are just as varied and different as each of our kids are.
    I know this comment will likely draw negative replies, but I am honestly not intending to come across as confrontational. After so many years of watching this “us versus them” environment grow to a fever pitch, I hope for the day when we can just agree to disagree, afford one another the dignity and respect that every human being deserves (don’t we have enough on our plates without having to add more?) and maybe realize that we are all part of the same club…some of us just dance to a different beat.

  • 4 Chris // Mar 10, 2012 at 8:11 pm

    Ms. Stagliano is the managing editor, not the media editor. That quote was written by another person, the media editor. There is a recent article on Respectful Insolence specifically about AoA’s media editor.

    If Ms. Stagliano is not anti-vaccine she has been hiding it well. Her behavior is not exactly respectful to those who do not share her views. So being lectured on how to behave by using her as an example is a bit ironic.

    I am curious which words in ANB’s article you find offensive. Was it the advice on how to evaluate a news report? Or the quotes by Dr. Grinker? Or the explanation of why some children seem to be “recovered”?

  • 5 Cindy Facteau // Mar 10, 2012 at 9:01 pm

    I misread the quote, and I apologize for the error. However, since the topic is alive (and was responded to), I’ve heard Ms. Stagliano speak in person, and she specifically referenced the fact that she is not “anti vaccine.” The desire to see certain additives removed from vaccines (or “cleaning them up”) doesn’t mean one is against vaccinating. The way I took it, she would like to see stricter regulations, but I cannot speak for her…only my opinion. ;)
    As far as me being “offended,” when did I state that I was offended? I mentioned that I was saddened by what I see as a growing “us versus them” attitude (and I don’t believe I said anyone was blameless in that either). We all share a responsibility to treat one another with respect, and honestly, no matter how an individual may respond to me, I am responsible for my own behavior at the end of the day. I wasn’t trying to attack, and if you interpreted it that way, then I don’t have any control over it, but I can assure you, I’m about as moderate as a person who wears my shoes can be. :)

    I’ll leave your blog alone, because I do not want to fight. Besides, a couple of posts wont change an entire trajectory of discourse… But I can say I gave it an effort. Have a pleasant day.

  • 6 Chris // Mar 11, 2012 at 10:20 am

    Ms. Stagliano only wishes certain additives were removed? Well, I hope she has the education and citations to get herself on the ACIP like John Salamone. Do come back when she is appointed to that committee, though I don’t believe her treatment of a former member will get her any points.

  • 7 Laura Hathaway // Mar 14, 2012 at 12:21 pm

    Early in the article, you mention that there is a lack of interest in reporting about autism by the media. On April 2nd Autism Speaks is sponsoring a global initiative to Light It Up Blue for Autism Awareness. You can find more information at http://www.LightItUpBlue.org. Certainly, events like this would merit media coverage and, thus, provide an opportunity to educate the public about recent trends in the autism community.

  • 8 Rebecca // Mar 20, 2012 at 12:34 pm

    I dont think we can there will always be outsiders – when I was at uni I did some neighbourhood research and there was a hospital in the area which had been through 20 names for children who would now be termed physically disabled – Every attempt to challenge prejudice goes forward a step then back – I have been a service user for 55 years and attitudes are worse now than they were way back then – Probably because society is bigger more people in the world less resources and a feeling of wanting to disappointments in life out on someone – there have been some amazing poster campaigns over the years and still people fear what they cannot/will not understand .

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