Whatever you do, keep your autistic child, and your autistic self, far, far away from Bryna Siegel and the facilities with which she is associated. An adjunct professor of psychiatry at the University of California, San Francisco, Siegel is a director for their autism clinic. And she is proudly bigoted against the population she claims to serve, as she explained to Casey Schwartz for an article at The Daily Beast:
The confusion extends outside of patient-doctor conversations. At the height of the Silicon Valley tech bubble, Wired magazine published a questionnaire developed by autism expert Simon Baron-Cohen, a self-report test for Asperger’s syndrome.
Siegel, whose office is in San Francisco, recalls that the questionnaire caused such a stir among the techie set that she was flooded with responses.
"I ended up telling my intake coordinator, 'If they leave you the number of their secretary to call back, do not call them back,'” she says. “If they have a secretary, they do not have Asperger’s syndrome.”
Got that? Siegel wants you to take your kid to her for therapy, but she thinks people who need that therapy can never be competent enough to have secretaries. Just to make the most obvious point, many autistic people who have succeeded have done so because they have had access to secretaries and other support people. Siegel must believe that Temple Grandin does not have autism, because Dr. Grandin has assistants and displays undeniable competence.
Siegel and her ilk believe that incompetence is the primary diagnostic criterion for autism: they cannot conceive of a competent autistic person because they see autism not as a neurological difference but as a series of problematic behaviors. So people who can repress those behaviors well enough to succeed must not have autism.
The biggest problem with this is for those kids who Siegel thinks are in fact autistic enough to deserve her services. Because the most important factor for any student's achievement, and even more for an autistic student, is high expectations, the belief in surrounding adults that success is possible with hard work. An expert like Siegel who believes that autism and incompetence are synonymous is unable to create an atmosphere where autistic kids will succeed, so I would stay far away from both the UCSF Autism Clinic and Siegel's Autism JumpStart Learning to Learn program.
But there is one group of people who should seek Siegel out: those with an unwanted diagnosis of Asperger's syndrome. She'll gladly get rid of it for you:
Bryna Siegel, a child psychiatrist at the University of California, San Francisco, was a member of the DSM IV working group. She says she “undiagnoses” Asperger’s far more frequently than she diagnoses it. For every 10 children who come to see her with a diagnosis of Asperger’s, she “undiagnoses” nine.
Research indicates that what autism diagnosis patients get depends much more on the doctor they see than on the symptoms they present, so Siegel is, unfortunately, not unusual in that she has made her decision before even knowing the patient's name. But most doctors, I hope, would wonder if there was something wrong with the instruments they used if they reached the same conclusion 90% of the time.
The people who hire Siegel to get rid of diagnoses of Asperger's syndrome are not, of course, the people who have it. She is hired by regional educational centers to remove these diagnoses so that they will not have to pay for services. They hire her because she makes the same decision 90% of the time. I hope that parents whose kids have been denied services on Siegel's word will request review by a less biased professional. No one should be listening to a doctor who admits to making the same diagnosis 90% of the time. I would think that an expert who has admitted that in print would have a hard time with judges and juries.
It's not just having a secretary that means you can't have autism, as Siegel told Alan Zarembo when discussing the case a 7-year-old girl who she "undiagnosed":
Siegel also noted that testers had at various points written that she was “friendly and cheerful,” engaged easily in conversation and used a variety of gestures and facial expressions.
“The girl told me about her friends,” said Siegel, who interviewed her and her mother during a two-hour video conference.
If you believe that autistic people cannot seem friendly and cheerful, you have met too few of us to claim to be a expert on us. If you believe we cannot have friends, you have never tried to befriend one of us. If an expert on autism like Siegel does not have autistic friends, she needs to recognize that she is not interested enough in us on a personal level to be able contribute meaningfully to the field.
If you think autistic people can't have friends, you have no business saying a word about us, ever again.
You don't know enough for your opinion to have any validity.
You're just a bigot.
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.
Alan Zarembo, whose series on autism appeared in The Los Angeles Times last week, appeared on National Public Radio's Talk of the Nation today.
As he did in The Times, Zarembo emphasizes the disparity in diagnosis and in services provided in California. He talks to three mothers who describes the struggles they had to get their children diagnosed and to get appropriate services. Clinical psychologist Catherine Lord discusses the importance of early intervention. They also explore the controversial topic of "recovery" and the likely changes coming in the next diagnostic manual and the issues regarding Applied Behavior Analysis. No discussion of autistic adults, other than pointing us elsewhere.
Want to know about autism? Ask someone autistic!
I've had mixed feelings about Alan Zarembo's series on autism for The Los Angeles Times, but I enjoyed the final segment, the one on autistic adults, very much. He makes the case that there probably has not been a dramatic increase in the number of autistic people:
The only study to look for autistic adults in a national population was conducted in Britain and published in 2009. Investigators interviewed 7,461 adults selected as a representative sample of the country and conducted 618 intensive evaluations.
The conclusion: 1% of people living in British households had some form of autism, roughly the same rate that the U.S. Centers for Disease Control and Prevention estimates for children in America today.
The British study found it didn't matter whether the adults were in their 20s or their 80s. The rate of autism was the same for both groups.
“That would seem to imply the incidence has not changed very much,” said Dr. Terry Brugha, a professor of psychiatry at the University of Leicester who led the study. He added that the findings were not conclusive and more research is needed.
And he asks where these autistic adults are. Some, an estimated 5000, are wrongly diagnosed and in mental hospitals:
Many more are thought to be in prisons, homeless shelters and wherever else social misfits are clustered.
But evidence suggests the vast majority are not segregated from society — they are hiding in plain sight. Most will probably never be identified, but a picture of their lives is starting to emerge from those who have been.
They live in households, sometimes alone, sometimes with the support of their parents, sometimes even with spouses. Many were bullied as children and still struggle to connect with others. Some managed to find jobs that fit their strengths and partners who understand them.
If modern estimates of autism rates apply to past generations, about 2 million U.S. adults have various forms of it — and society has long absorbed the emotional and financial toll, mostly without realizing it.
The assumption that autistic people must always be a burden is troubling, but Zarembo then does what he has failed to do elsewhere in the series: talk to autistic people about autism. And their stories are fascinating and revealing. Mark does okay because of his relationship with Lorraine and his job in the family business. Howard was doing okay until he lost his job at a security company. Jeanne depends on her 83-year-old mother. These people are like autistic people I know. They are like me. I'm grateful to Zarembo for introducing his readers to them.
Alan Zarembo's series on autism for The Los Angeles Times continues today with a look at Applied Behavior Analysis, the treatment which is considered to be the most effective for people with autism.
I am happy to see negative attention brought to the idea that ABA can "recover" children from autism:
Dr. Bennett Leventhal, an autism specialist at the Nathan Kline Institute for Psychiatric Research in Orangeburg, N.Y., said that in rare cases an autistic child receiving therapy can improve enough to pass for normal.
But others who are deemed recovered "probably never really had autism in the first place," he said.
Promoting recovery amounts to "taking advantage of a vulnerable population," Leventhal said.
"These are families who are desperate. Their children are disabled. They'll do anything for them to make them well."
I believe that a compassionate, respectful variation on ABA is the most effective treatment for autistic children, but I share concerns expressed in this article about the research that supports it. I wish that Zarembo had also addressed the experimental advantage that behaviorist interventions have (experiments tend to indicate they work better than they really do). And I wish he had discussed the issue of over-compliance, which can be a problem when ABA is successful.