According to Dr. Catherine Lord, the DSM-5 committee responded to concerns that the new diagnostic standards adopted last Saturday would strip many people of an autism diagnosis they need for services by clarifying that people who currently have diagnoses should not lose them because of the changes:
The new, streamlined definition was approved, but with language that took into account a person’s diagnostic history. “It’s explicit that anyone who’s had an Asperger’s or autism or PDD-NOS diagnosis before is now included,” said Catherine Lord, a committee member who worked on the new definition and who is director of the Center for Autism and the Developing Brain in New York. “Essentially everyone gets in.”
Since The New York Times published an article last week suggesting that many people who currently are diagnosed with autism will not meet the new criteria that have been proposed for the next edition of the standard diagnostic manual, the internet has exploded with opinions. My opinion is here, and I collected earlier reactions here.
John Elder Robison shares my belief that we need to focus more on resources than on diagnostic standards:
I do understand why people express concern, when they say words like that might be interpreted very narrowly for the purpose of reducing the number of individuals diagnosed. However, I do not think that was or is the intent of the framers of the ASD definition.All that aside, I do think people who receive services face a real threat of interruption or disruption when this change takes place. Not because they “won’t have a diagnosis,” or for any clinical reason. Rather, I think people with autism are at risk to lose services because ignorant, ethically challenged, or financially pressured bureaucrats will use the diagnostic evolution as justification for changes that may benefit some other group at our expense. Obviously, not every government official or service provider will think this way, but some surely will, and we need to both be on guard and continue to raise awareness about this risk.
For this is the real threat to the autistic population, from the DSM changes. "Losing a diagnosis" is a red herring.
Many school are already using any loophole they can find to escape IEPs and their obligations under the spirit of the law. State social service agencies can be even worse. A big change like this could make that kind of treatment easier for them to justify and perpetrate, and that is bad.
One of the problems with being a member of a minority group is that people who know nothing about you feel free to make ridiculous claims about your group in order to make a point they think is important. This happened recently when white, middle-aged columnist Gene Marks wrote a blog post about what he would do, and how he would feel, if he were a "poor black kid":
If I was a poor black kid I would first and most importantly work to make sure I got the best grades possible. I would make it my #1 priority to be able to read sufficiently. I wouldn’t care if I was a student at the worst public middle school in the worst inner city. Even the worst have their best. And the very best students, even at the worst schools, have more opportunities. Getting good grades is the key to having more options. With good grades you can choose different, better paths. If you do poorly in school, particularly in a lousy school, you’re severely limiting the limited opportunities you have.
And I would use the technology available to me as a student. I know a few school teachers and they tell me that many inner city parents usually have or can afford cheap computers and internet service nowadays. That because (and sadly) it’s oftentimes a necessary thing to keep their kids safe at home than on the streets. And libraries and schools have computers available too. Computers can be purchased cheaply at outlets like TigerDirect and Dell’s Outlet. Professional organizations like accountants and architects often offer used computers from their members, sometimes at no cost at all.
Marks didn't really bother to learn anything about what it would be like to be someone different from himself, or he would at least know that over a third of households in the United States do not have broadband internet access, and that the people who don't are largely (guess what) either poor or members of minority groups.
And the entire concept of the piece is puzzling-- why would anyone care what this guy would do if he was someone he is not? Wouldn't it be more interesting to find out what someone actually in that situation thinks?
Something similar happens in a blog post from Dr. Claudia Gold that purports to give "A Child's View" of the controversy surrounding the proposed changes to the diagnosis of autism in DSM-5:
Child's voice. " I am very smart and tuned in to everything happening around me. I get overwhelmed when there are a lot of people. I love music, but I hear every sound so intensely that I need to cover my ears. Sometimes I run around in circles to help myself calm down. When grown-ups make me go somewhere that is too loud or confusing, I lie down on the floor and scream. When people get too close I cant' stand it. Sometimes I hit the other kids when this happens and now I can't go to preschool. My parents fight all the time about what to do about my difficult behavior. My little sister is very quiet because she knows to get out of the way when I am having trouble"
Adult's voice. "He has Autism"
Cue the chipmunk:
Dr. Gold is not basing this on the perspective of any actual autistic person. She is a pediatrician who has written a book called Keeping Your Child in Mind: Overcoming Defiance, Tantrums, and Other Everyday Behavior Problems by Seeing the World through Your Child's Eyes.
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
My Child's Not Perfect is a two-part ITV1 documentary about young people with unusual neurological problems. Katherine has selective mutism, and Henry has Tourette's syndrome. The sequence on Adam, a boy with problem aggression who may have autism, gives another, and very welcome, perspective on the issue of diagnosis than yesterday's Los Angeles Times article does. Not perfect, by any means, but a very interesting and sometimes inspiring look at kids like ours.