A 28-year-old hiker named William M. LaFever survived four weeks alone in the arid Southern Utah wilderness, eking out a living on river water, roots and frogs. When a search helicopter spotted him beside a riverbed in mid-July, he was too weak to stand but managed a feeble wave. Authorities called his rescue a miracle.
LaFever’s family members weren’t as shocked. William has Asperger’s syndrome, they told reporters, and like many with this form of autism, he possesses exceptional determination and focus. Instead of wilting in the face of crisis, he applied his mind to the mechanics of staying alive.
Asperger’s syndrome – a higher-functioning type of autism characterized by poor communication skills and obsessive, repetitive behaviors – has taken on a lore of its own, with some wearing the nickname “Aspie” as a badge of honor. It is said that there is a greater proportion of people with Asperger’s in Silicon Valley than anywhere in the world, and some hail the diagnosis as a victory of sorts – better than being called crazy or mentally ill, and preferred to the stigma of autism.
The diagnosis of Asperger’s, however, could soon disappear, one of many changes to the “bible” psychiatrists and psychologists use to identify mental disorders. The American Psychiatric Association has proposed a new definition of autism for its overhaul of the Diagnostic and Statistical Manual of Mental Disorders, and Asperger’s and PDD-NOS – also known as atypical autism – would no longer appear as separate diagnoses if the changes are approved.
In theory, individuals with Asperger’s and PDD would fall on the mild end of the scale in a new and, many contend, narrower definition of Autism Spectrum Disorder in the DSM-5, scheduled for publication in May 2013. But many practitioners, parents and researchers are concerned that the changes, meant to reflect advances in research, will exclude some children from the diagnosis of autism altogether.
“It’s going to have a tremendous impact on the field,” says Richard E. Garnett, Ph.D., a psychologist and chairman of the Intellectual & Developmental Disabilities Needs Council of Tarrant County. “Schools and insurance companies are terrible about maneuvering among those terminologies to have kids not get the full array of services. It saves them money.”
Carolyn Garver, Ph.D., director of The Autism Treatment Center in Dallas, says she initially “freaked out” about the proposed changes but is coming to terms with them. “I’m still going to diagnose the way that I do,” says Garver, who has been at the ATC for 32 years. “I’m a little uncomfortable about the Asperger’s thing … [but] I don’t think they’re going to re-diagnose everybody that already has a diagnosis. You think they have the resources to re-diagnose everybody? I don’t think so.” Garver notes that she doesn’t use the DSM to diagnose autism, preferring tools such as the ADOS (Autism Diagnostic Observation Schedule), which she calls the “gold standard for autism.”
The Arc, a national organization that advocates for the mentally and physically disabled, has forwarded a list of concerns to the American Psychiatric Association about the proposed changes to the definition of autism – including a recommendation that the number of social communication symptoms required for an Autism Spectrum Disorder diagnosis be lowered from three to two.
Having to meet three criteria instead of two could make a big difference, says Erinn Hall, executive director of The Arc of Greater Tarrant County. “The devil’s in the details,” she notes. “Our main concern is that not only will these criteria leave some people out of diagnostic eligibility, but they will also knock them out of service eligibility.”
The proposed changes to the DSM come at a time when state and county agencies in Texas serving the mentally disabled have suffered major budget cuts, Hall adds. A family with a higher-functioning child with Asperger’s might only qualify for $5,000 in services, but those services could be “essential for the child to reach his highest level of functioning,” Hall says.
Parents are worried about the proposed redefinition of autism, she says, because they feel like “they’re throwing a lot of eggs into the basket of autism. They’re aware of the battle it took to obtain a proper diagnosis in the first place, and now they’re in limbo.”
