What Becomes of People With Asperger's Now That It's Not a Disorder?
U.S. psychiatrists have reclassified the syndrome
Instead, the American Psychiatric Association last week announced that it was updating the main manual used by psychiatrists and psychologists to diagnose various mental illnesses. Among the updates to the Diagnostic and Statistical Manual of Mental Disorders (DSM) is removal of the term Asperger's and reclassification of its symptoms under the umbrella term "autism spectrum disorder" (ASD).
Mental health experts say doctors are well-equipped to continue caring properly for those now newly diagnosed as having an ASD. But the change may cause a sense of unease among those with the disorder, while some families still struggling to diagnose their children's needs may be reluctant to have their kids given the "autism" label due to the stigma often attached. In addition, the change could impact payment for treatment and the kinds of services those with the disorder receive as the DSM is also used to define what doctors recognize as mental disorders, for the insurance industry to decide what treatment to pay for, and to help schools decide how to allot special education.
"It is anxiety-provoking when people who have been given a diagnosis - like Asperger's - suddenly find out that their disorder doesn't exist anymore—at least according to the new DSM," said Dr. Carole Lieberman, renowned as the "media psychiatrist." "It makes them feel even more isolated and freakish, as if they have lost their identity, which is already a problem for them. What always happens is, for about a year after a new DSM is released, psychiatrists and other mental health professionals struggle to reclassify patients. Sometimes it feels like putting square pegs in round holes. However, I don't think that there will be much change in terms of access to services."
The U.S, Centers for Disease Control and Prevention list ASDs as a group of developmental disabilities that can cause significant social, communication and behavioral challenges. The symptoms, which can vary from mild to severe in person to person, can often begin before the age of 3 and last a lifetime. Signs include avoiding eye contact and wanting to be alone, repeating words or phrases over and over, having trouble understanding other people's feelings, and having obsessive interests.
The CDC declares there is no "cure" for ASDs, but notes there are medications that can better one's functionality by helping manage high energy levels or an inability to focus, and successful treatment services including auditory training, music therapy, or sensory integration.
Jonathan Lyons' son is diagnosed with Asperger's, but he said he wasn't "especially concerned [or] terribly surprised" by news of the change to the diagnostic manual. Though he admits to having to be "proactive" at his son's public school, once he started to receive help—including assistance with writing and conversational speech—he said accessing services got progressively easier.
Still, Lyons' worries lie with fellow parents of Asperger's-diagnosed children—that is, until the APA can better educate them.
"My only concern about the change in diagnosis is that some parents will become hesitant to hang the 'autism' label on children," said Lyons. "Like my son, who appears gregarious and a little quirky, but is otherwise very high functioning."
Dr. Fran Walfish is concerned about more than simple stigma. She fears that the new classification will mean children who need treatment won't get it. As a psychotherapist who began her career on the clinical staff at Cedars-Sinai Medical Center in 1970—before the diagnosis of Asperger's Disorder existed—Walfish recalls treating children who were "severely autistic," ones who "likely qualified for a diagnosis of Asperger's [but] were called Minimal Brain Dysfunction or Hyperactive.
"With the criteria and coding in the new version of the DSM discarding Asperger's, I think the biggest hit will be financial -- taken by the parents," Walfish said. "Sadly, many children with Asperger's may not receive the same quality and quantity of treatment strictly because insurance companies will no longer reimburse for these very needed services."
Upon approving the diagnostic manual's revisions, APA chair Dr. David Kupfer said the reclassification was, in fact, being done to provide better service to the diagnosed. “We decided to place autistic disorder, Asperger’s, childhood integrative disorder, and pervasive mental development disorders under one umbrella of diagnoses to allow clinicians to make more precise set of decisions and assessments about the children," he said.
That is certainly the hope. But education will be key, especially for parents and families, Lyons said.
"The new diagnosis nomenclature essentially says that someone like the 'Rain Man' and Albert Einstein have the same disorder, except for degree," Lyons said. "That may be a bitter pill to swallow for some parents until the APA can better educate the public and remove the stigma."
In addition to removing Asperger's, the new DSM, to be released in spring 2013 nearly 20 years since its last revision, will include hoarding as an officially recognized disorder for the first time; the term pedophila will be referred to as 'pedophilic disorder'; 'mental retardation' will be changed to 'intellectual developmental disorder'; gender identity disorder -- often used to describe transgender patients -- will be replaced with the more neutral term 'gender dysphoria'; eating disorders will be more clearly defined, as binge-eating will become a main category; and there will be a greater focus, with more suggested diagnoses and treatment, for post-traumatic stress disorder (PTSD).