By Anne Dachel
Stories are out everywhere about the American Psychiatric Association’s plan to revise their manual of mental disorders, known as the DSM, where they’ll be changing what we now call autism.
I’m not sure why we should trust the people who can’t tell us anything for sure about autism. When exactly are they going to get it right? In a couple of years will they be overhauling autism again? I would think that a lot of psychiatrists are embarrassed about the perpetual head scratching over autism, but they’re not. News reports give us doctors who welcome the changes. It seems they’ve finally figured out what the word autism really means.
Parents are worried however. No one is expressing a lot of hope that a new definition will make life better for any kids with autism, in fact, a lot of parents are very concerned that getting rid of the label of autism will mean children will lose critical services.
Now Dr. Catherine Lord, one of the experts working on the DSM changes, hopes that won’t happen. She was on CBS News on Jan 25 saying, "Families are very, very concerned that their kids are going to lose their diagnosis. It's really important to reassure people that there's no intention that that will happen. ...The intention of the new criteria is to better describe children--and adults--who have autism, Aspergers Syndrome, PDD-NOS, ... We don't want criteria that diagnose everyone as having autism. We want to do a better job of diagnosing the people who do. We're not trying to exclude anyone."
And Lord also announced on CBS that for some kids, autism isn’t a lifelong disability. Lord said, “10 to 20 percent outgrow autism--those without other severe problems.” That is a stunning claim. I seriously want to see the thousands of kids who outgrew autism, especially kids who were non-verbal and who displayed all the signs of classic autism we’re so familiar with. I want to see those children today as a typical-acting with no signs of autism.
With all the quibbling over the word autism, no one is ever worried. The Catherine Lords of the world act like we have lots of time to figure out autism and that losing a generation of children to a disorder no one ever heard about 25 years is something we just have to learn to live with. No one talks about what this country will be like when one percent of adults as well as kids have autism and we’re paying and paying and paying. (And I’m sure there are lots of people who look forward to that day so they can say, “See, we told you the rate was the same for adults!”)
I came across a report on autism in the real world recently that made it clear that no matter what officials do to it, autism will bankrupt us. Experts will probably be clueless for many years to come, but the states will have to deal with the reality of autism. This report just came from Pennsylvania: Pennsylvania DPW Releases Nation's Most Comprehensive Autism Needs Assessment.
It’s about the effect autism is having on that state. If you can continue on after reading, “Autism affects an estimated 30,000 Pennsylvania children and adults, and that 85 percent of these individuals also have another diagnosis such as an intellectual disability, physical health challenges or mental health issues,” things get worse.
“Among the findings, the study shows that training in social skills has been identified as the most common unmet need for both children and adults with autism. In addition, it was found that more than two-thirds of adults with autism are unemployed or underemployed, when in fact these individuals are fully capable of working, but lack the social skills to be able to hold or find employment.”
It’s hard to believe people are still learning these simple truths about autism.
Large numbers of people are getting little to no help.
“The assessment study also shows that individuals living in rural areas face increased challenges in accessing critical services and supports. This is a critical issue because 48 of Pennsylvania's 67 counties are designated as rural. Most notably, the study found that in rural areas, it is difficult to find doctors, dentists, or other specialty care providers trained to understand the unique behavioral challenges associated with caring for individuals with autism. “
Finally, they tried to find something positive to say with little success.
“The study also found good news. There has been a decrease in the amount of time it takes for families with young children to receive a diagnosis. Even with the decrease, families are still waiting up to a year for a diagnosis, and there remain few to no options for diagnosing adults with autism.”
I would like to ask Catherine Lord and everyone involved in changing the DSM definition of autism what possible relevance their work has to the situation in Pennsylvania and everywhere else in the country. Calling autism by another name, changes nothing. We have hundreds of thousands of neurologically disabled CHILDREN in the U.S. and they don’t know why. A Harvard study back in 2006 put lifetime care cost conservatively at $3.2 million for EACH ONE. After the DSM people finally get done figuring out what to call these children, maybe they’ll work on what we’re going to do with them as adults.
Five years ago, I wrote the piece, The Really Big Lie About Autism , and I quoted Volkmar who doesn't believe there's been any increase in autism. Instead he thinks autistic people are finally being recognized. I said this about Volkmar:
“In the New York Times article, ‘Study Puts Rate of Autism at 1 in 150 U.S. Children,’ Dr. Fred R. Volkmar, from Yale University School of Medicine was quoted as saying, ‘It appears that the rates are unchanged over the past 20 years or so.’"
On Jan 20, 2012 Fred Volkmar was in this NYT piece on the DSM5: New Definition of Autism Will Exclude Many, Study Suggests
“The changes would narrow the diagnosis so much that it could effectively end the autism surge, said Dr. Fred R. Volkmar, director of the Child Study Center at the Yale School of Medicine and an author of the new analysis of the proposal. ‘We would nip it in the bud.’ “Experts working for the Psychiatric Association on the manual's new definition - a group from which Dr. Volkmar resigned early on - strongly disagree about the proposed changes' impact. "I don't know how they're getting those numbers," Catherine Lord, a member of the task force working on the diagnosis, said about Dr. Volkmar's report. “Previous projections have concluded that far fewer people would be excluded under the change, said Dr. Lord, director of the Institute for Brain Development, a joint project of New York-Presbyterian Hospital, Weill Medical College of Cornell University, Columbia University Medical Center and the New York Center for Autism.” Now this just out from the Yale Daily News : Redefinition of autism sparks concern:
“Being diagnosed with autism could be a lot more difficult if a new diagnostic definition goes into effect.
“In its next manual on mental disorders, the American Psychiatric Association plans to issue a single set of diagnostic criteria that will merge the four types of disorders on the autism spectrum, which include autism and Asperger syndrome. Although no current patient will be affected by the new rules, research by Yale Child Study Center Director Fred Volkmar suggests that the revision may disqualify a large number of intellectually disabled patients from receiving a diagnosis of autism spectrum disorder in the future. Though the study is still embargoed, with at least a month before publication, Volkmar presented his data Jan. 19 to the Icelandic Medical Association, creating widespread alarm about the new criteria.
“’I think [the proposed revision] is a mistake," Volkmar said. "It changes people's eligibility for key services, and a lot of people expressed concern.’
“’He said the change would not only affect autistic patients' access to medication and medical services, but also impact their eligibility for special schools. Volkmar also questioned the scientific validity of the decision.
“In their study, Volkmar and his team looked at a group of individuals with moderate cognitive disabilities who had been evaluated in 1994, when the APA was formulating its previous autism definition. Over half of those patients who were diagnosed with some form of autism spectrum disorder would no longer receive that diagnosis if they were evaluated under the new definition, Volkmar said.
“Volkmar said the revision may have been motivated by an attempt to be "economical" at the cost of denying services to some patients with less severe symptoms.
“Meanwhile, the APA said in a press release that the recommendations "reflect the work of dozens of the nation's top scientific and research minds," and insisted that merging the disorders will result in more sound diagnoses. The press released also disputed the fact that any type of person who was previously classified as autistic would not receive an equivalent diagnosis under the new guidelines.”
So will the changes result in real better diagnosing or will they leave out a lot of disabled people simply to cut costs? Clearly, Volkmar disagrees with Catherine Lord and the APA’s proposals for changes to the DSM and he shows that the experts STILL DON’T UNDERSTAND AUTISM or know what in the world to do about it.
Anne Dachel is Media Editor for Age of Autism. Subscribe to her news service at AnneDachel.com.