New Definition of Autism Will Exclude Many, Study Suggests

[Karmadillo]

Yves Smith at Naked Capitalism noted: "Interesting how one definition that psychiatrists are tightening up is also one that Big Pharma does not treat. This does not appear to be a coincidence."

http://www.nytimes.com/2012/01/20/health/research/new-autism-definition-would-exclude-many-study-suggests.html?_r=2&hp

New Definition of Autism Will Exclude Many, Study Suggests
By BENEDICT CAREY
Published: January 19, 2012

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 definition is now being reassessed by an expert panel appointed by the American Psychiatric Association, which is completing work on the fifth edition of its Diagnostic and Statistical Manual of Mental Disorders, the first major revision in 17 years. The D.S.M., as the manual is known, is the standard reference for mental disorders, driving research, treatment and insurance decisions. Most experts expect that the new manual will narrow the criteria for autism; the question is how sharply.

The results of the new analysis are preliminary, but they offer the most drastic estimate of how tightening the criteria for autism could affect the rate of diagnosis. For years, many experts have privately contended that the vagueness of the current criteria for autism and related disorders like Asperger syndrome was contributing to the increase in the rate of diagnoses — which has ballooned to one child in 100, according to some estimates.

The psychiatrists’ association is wrestling with one of the most agonizing questions in mental health — where to draw the line between unusual and abnormal — and its decisions are sure to be wrenching for some families. At a time when school budgets for special education are stretched, the new diagnosis could herald more pitched battles. Tens of thousands of people receive state-backed services to help offset the disorders’ disabling effects, which include sometimes severe learning and social problems, and the diagnosis is in many ways central to their lives. Close networks of parents have bonded over common experiences with children; and the children, too, may grow to find a sense of their own identity in their struggle with the disorder.

more...

[pnwmom]

1. What is the point of this? How is this supposed to help these families? nt

[Louisiana1976]

2. If the definition is narrowed they won't be able to get the help they need.

[loyalsister]

3. Not necessarily

The symptoms will not be disregarded. They will be understood as being on the Autism spectrum and still acknowledged as interfering with daily life. There has been a great deal of controversy over the possibility of over diagnosis and hysteria regarding and Autism epidemic. This will bring more clarity to the numbers and help us understand how to help people who exhibit these clusters of symptoms individually.

[Karmadillo]

4. It's hard to imagine they'll get the help they need without

the diagnosis. It's difficult for me to tell from the article what's the compelling justification for excluding so many. Smith's comments cited in the OP are probably relevant, although I don't know enough about the situation to know for sure.

[ecstatic]

5. On CNN (I think), they argued that people were being overtreated

for a disease they didn't have. Maybe some of these symptoms can be treated without the "autism" label being put on the child (for life).

[loyalsister]

8. They already do

They are talking about codifying and clarifying something that is already happening. The Autism spectrum has been a part of understanding these disorders for some time. This gives a clearer picture of what services are needed.

[Karmadillo]

9. The article seems to suggest they won't get those services

http://www.nytimes.com/2012/01/20/health/research/new-autism-definition-would-exclude-many-study-suggests.html?_r=3&hp

<edit>

The proposed changes would probably exclude people with a diagnosis who were higher functioning. “I’m very concerned about the change in diagnosis, because I wonder if my daughter would even qualify,” said Mary Meyer of Ramsey, N.J. A diagnosis of Asperger syndrome was crucial to helping her daughter, who is 37, gain access to services that have helped tremendously. “She’s on disability, which is partly based on the Asperger’s; and I’m hoping to get her into supportive housing, which also depends on her diagnosis.”

<edit>

“Our fear is that we are going to take a big step backward,” said Lori Shery, president of the Asperger Syndrome Education Network. “If clinicians say, ‘These kids don’t fit the criteria for an autism spectrum diagnosis,’ they are not going to get the supports and services they need, and they’re going to experience failure.”

[Donald Ian Rankin]

6. There are a bunch of [i]possible[/i] benefits.

One is stopping families spending time/money/effort on futile "treatments".

Also, it's possible that while it won't help the families of those children who would otherwise have been diagnosed as autistic, it will help others - e.g. it may lead to the resources of autism support charities being concentrated more on children who need them/need them more.

[Donald Ian Rankin]

7. Defining children as autistic/not autistic, while probably necessary, is entirely arbitrary.

Autism is a set of symptoms, not an understood condition; different people exhibit those symptoms to a greater or lesser degree. And most of them are symptoms that can't even be accurately measured.

It seems clear that there is an underlying condition, or multiple underlying conditions, that cause a bunch of those symptoms together, so having a category "autistic" and a notion of the autistic spectrum are useful ones for helping support those people.

But, while for practical purposes we do need to set a point on that spectrum where we start calling people "autistic" and treating them as such, we should acknowledge that that point is largely arbitrary.

[Trillo]

10. this reminds of how "safe" radiation levels were raised after Fukushima.

Got a problem in statistics, just change the underlying definitions. It's just like magic.