I just got confirmation that the House Oversight Committee has invited two leaders of the autistic self-advocacy community to be witnesses at the hearing they are holding this Thursday on the federal government's response to autism. The majority members have invited Michael John Carley, president of the Global and Regional Asperger's Syndrome Partnership, and the minority members have invited Ari Ne'eman, president of the Autistic Self Advocacy Network.
Mr. Carley told me, "My hope is to convey to the committee that how we proceed (with special regard to tone), is just as important as the question of 'in what direction do we proceed?'"
Great news, but you aren't off the hook yet!
You still need to attend the hearing if you can, and we all need to fax our own written testimony to the committee.
GRASP publishes a letter from nine-year Autism Speaks volunteer Michele Montanez to new president Liz Feld on why it is important that the organization stop using the word "cure":
For many years, autistics themselves have been fighting to be heard. Their voices are getting louder and louder. We purport to speak for autistics as well as the parents that form our backbone. The vast majority of them, the ones that advocate for true acceptance in our world of autistics as they are instead of as close to neurotypical as we can therapy them into, are emphatically opposed to the word cure. We promote advocacy and acceptance, and yet when the very people we promote advocacy and acceptance define what that means for themselves, we continually ignore it. Ironic for an organization who’s tag line is “Autism Speaks. It’s time to listen.” We are not listening to the group who matters most in our mission. Our attempts to get autistic self advocates to the table to work with us, instead of vilifying us, will never work as long as we continue to overtly, persistently, and knowingly continue to be offensive.
Thanks to Michele for referencing this piece I wrote about why it bothers me that Autism Speaks-branded school supplies being sold at Walmart carry this message: "6% of the net proceeds will be donated to Autism Speaks, a non-profit organization dedicated to finding a cure for Autism."
Thanks to Amy Sequenzia for pointing out to me that she did.
Last week, Michael John Carley reported on GRASP's meeting with members of the DSM-5 committee's Autism Spectrum Disorder Workgroup. You should read the whole thing, but this is the upshot:
Outside of being able to say they met with us and listened to us, I didn’t pick up any other motive on their part for the meeting. They are going ahead.
Michael John Carley shares that the DSM-5 Committee has agreed to sit down with GRASP to discuss the impact of proposed changes in autism diagnosis:
While there's been a lot less press coverage, there's been more going on behind the scenes so it's been a rather optimistic period in all of this. The Committee has granted GRASP's request for a sit-down (though we haven't worked out a date yet), and we've begun the arduous task of coalitioning with other organizations to demand 1. an Independent Scientific Review of the proposed changes, as well as 2. a Risk/Benefit analysis of the impact on clinical services—the latter two to be conducted, unlike the present Committee, by professionals who have experience with a) both adults and children, b) all ends of the spectrum, and c) clinical practice (the current committee is predominantly if not all composed of academics).
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.