Autismland completely blew up after The New York Times published their piece about a study indicating that many people currently diagnosed with Asperger's syndrome or autism would not receive a diagnosis under new proposed standards and might face the loss of vital services. People are in a panic, and it is overwhelming to me. I hope you will read my first piece about this.
In it I explain that the panic is legitimate but misplaced: people are already losing diagnoses and services because of economic pressure. The chairman of the committee making the changes has admitted that this is one of the purposes for the change:
“We have to make sure not everybody who is a little odd gets a diagnosis of autism or Asperger disorder,” said Dr. David J. Kupfer, a professor of psychiatry at the University of Pittsburgh and chairman of the task force making the revisions, which are still subject to change. “It involves a use of treatment resources. It becomes a cost issue.”
That quote comes from an excellent article by Amy Harmon, who explains the conflicts and concerns clearly. I want to be clear that I think there are legitimate worries about the changes, but I share Melody Latimer's frustration with the study Fred Volkmar is using to scare people:
Hey look! We have some apples.
Red Delicious (Autism), Granny Smiths (Asperger’s), Yellow Apples (PDD-NOS), and Others (Rett’s and CDD)
Red Delicious Apples are: Red, Have a Peel, Have a stem, Has several seeds at core.
Granny Smith Apples are: Green, Have a Peel, Have a stem.
Yellow Apples are: Red and Yellow, Have a Peel, Have a stem.
(I can’t tell you data used has not been released.)
Diagnostic criteria match the above.
Diagnostic criteria change.
To be an apple:
- You must have a peel and a stem. (You have to have communication challenges.)
- You must have seeds. (You must have social challenges.)
- You can either be tart, sweet, or somewhere in the middle. (You may have restrictive behaviors, interests or activities.)
Oh dear. It seems that Granny Smith Apples and Yellow Apples no longer meet the criteria to be called apples.
I also like very much what Michael Forbes Wilcox says about the problems inherent to a behavioral diagnosis for autism:
We are in the trap of buying into the behavioral model. Autism is a neurological condition, not a behavioral one. Since there is no widely-accepted objective test that will identify someone as autistic, we are left with a behavioral, subjective diagnostic process. This is, I suppose, how the APA retains a toehold. And, of course, to uphold the tradition/myth that only psychiatrists are qualified to prescribe psychotropic medications.
Perhaps we are fighting the wrong fight. Why argue with the APA? Why not work in other areas to ensure that Asperger’s and related learning differences are recognized in the world at large as disabilities that need to be treated on a par with any other disability that creates a barrier to full inclusion or to gaining full potential?
Yes, I realize my suggestion raises a whole host of other questions and challenges. Who, then, defines what is autism/Asperger’s etc.? Who is qualified to diagnose? I have a non-clinical view (my chief qualification in this field being that I am autistic), and I’m sure there are many complications of which I’m not aware, but I have faith that, if properly worked out, things should not be all that much different from the way they are today.
For those of you who are inclined to sign it, there is a petition at Change.org to request that the proposed changes be abandoned.
And my friend Jacob shares this:
Call the APA directly at 703.907.7300 (a Virginia phone number) AND email them at firstname.lastname@example.org or email@example.com
1. There has been a great deal of legitimate worry over proposed changes to the way that autism will be diagnosed in DSM-5. The suggestion is to eliminate specific diagnoses like Asperger's syndrome and PDD-NOS and have just one general autism spectrum disorder. This worries both people who are concerned that the needs of the most severely disabled will be ignored and those who fear that people whose needs are less immediately visible will not be able to get a diagnosis and will be denied services.
2. Although those are real concerns, I think the change is good. Diagnosis varies too much from doctor to doctor, and level of functioning varies too much within the life of an autistic individual, for rigid categories to make sense. It is important that we remember that Asperger's syndrome is separated from autism more by geography than by anything else. If Leo Kanner and Hans Asperger had done their work in the same country, or had worked together, the concept of dividing the spectrum as we do would never have occurred to us.
3. There is great consternation in Autismland over an article that just appeared in The New York Times. Dr. Fred Volkmar is sounding alarm bells over the proposed changes in how autism is approached by the DSM-V:
“The proposed changes would put an end to the autism epidemic,” said Dr. Fred R. Volkmar, director of the Child Study Center at Yale University School of Medicine and an author of the new analysis. “We would nip it in the bud — think of it that way.”Experts working on the new definition — a group that formerly included Dr. Volkmar — strongly questioned the new estimate. “I don’t know how they’re getting those numbers,” said Catherine Lord, a member of the task force working on the diagnosis.
Well, Dr. Lord, here's where he's getting those numbers from:
In the new analysis, Dr. Volkmar, along with Brian Reichow and James McPartland, both at Yale, used data from a large 1993 study that served as the basis for the current criteria. They focused on 372 children and adults who were among the highest-functioning and found that over all, only 45 percent of them would qualify for the proposed autism spectrum diagnosis now under review. The focus on a high-functioning group may have slightly exaggerated that percentage, the authors acknowledge.
The likelihood of being left out under the new definition depended on the original diagnosis: About a quarter of those identified with classic autism in 1993 would not be so identified under the proposed criteria; about three quarters of those with Asperger’s would not qualify; and 85 percent of those with P.D.D.-N.O.S. would not.
Dr. Volkmar presented the preliminary findings on Thursday. The researchers will publish a broader analysis, based on a larger and more representative sample of 1,000 cases, later this year. Dr. Volkmar said that although the proposed diagnosis would be for disorders on a spectrum and implies a broader net, it focuses tightly on “classically autistic” children on the more severe end of the scale. “The major impact here is on the more cognitively able,” he said.