Brian King says he is blessed with Asperger’s syndrome. His wife and three sons are also on the autistic spectrum. He titled his first book “I’m an Aspie.” A licensed clinical social worker, King is an ambassador, educator and agent of goodwill between the Aspie and neurotypical communities. He embraces the label.
That label may no longer exist come May 2013, when the American Psychiatric Association is set to publish the fifth edition of its Diagnostic and Statistical Manual of Mental Disorders. In February, the APA released the first draft of proposed changes to the manual. Among the recommendations the DSM-5 Task Force made was to create a broad “autistic spectrum disorders” diagnosis that would subsume Asperger’s syndrome, autistic disorder, childhood disintegrative disorder and the nebulous PDD-NOS, pervasive developmental disorder (not otherwise specified).
“Scientifically, there really is no indication that [Asperger’s syndrome] is a separate disorder,” said Susan Mayes, a psychiatry professor at the Penn State College of Medicine.
Both Asperger’s syndrome and autism are developmental disorders, typically manifesting in early childhood, characterized by deficiencies in social interaction and restricted, repetitive behavior patterns or interests. Autism spectrum disorders affect about 1 in 110 children in some areas of the U.S., according to a 2006 survey conducted by the Autism and Developmental Disabilities Monitoring Network.
In the DSM-IV, Asperger’s syndrome differs from autistic disorder in that it does not require a “clinically significant” delay in language development. Because a delay in language development is not necessary for an autistic disorder diagnosis, however, and little else distinguishes the two in theory, Mayes said clinicians have applied the terms loosely and with confusion.
“If they eliminate Asperger’s, all they’ve done is reshuffled the deck,” said Michael First, a professor of clinical psychiatry at Columbia University who edited the DSM-IV.
In practice, the only thing distinguishing Asperger’s syndrome from autism diagnoses right now is IQ level, according to the APA’s website (they were unavailable for comment).
“I think by creating the subtype [the APA] created a lot of confusion for families and professionals and it gave parents the false impression that Asperger’s was not autism,” said Mayes.
Some “Aspies” have rallied around that tacit misunderstanding, relieved by the popular perception of Asperger’s syndrome as a sort of “Rain Man”-lite, high-functioning autism.
The DSM-5 draft erases the line officially, threatening this element of the Aspie identity. “One of the bigger issues that’s come to light is the disparity between the two ends of the spectrum,” said King. “You have the more severely affected – non-verbal, self-injurious – and at the other end you have people who are college professors and engineers,” said King.
Aspie Roger Latiner, 44, travels around the country, lending his skills to various engineering companies. He said he’s seen a lot of discrimination in the field, and worries if people just say “autistic,” they will only think of low-functioning autism.
“We should have more details about what a person’s strengths and weaknesses are, in lots of different categories. I’m almost afraid that we’re going in the other direction,” Latiner said.
In the clinical realm, King said he thinks this generalization will force mental health professionals to examine their patients more closely. “It’s more difficult to stereotype when you can’t say Asperger’s, PDD, autism, because you must get to know the individual.”
“If you’ve met one person with autism, you’ve met one person with autism,” goes a popular aphorism in the autistic community.
Of more than a dozen people on the autistic spectrum interviewed, not one attempted to make the biological case for keeping Asperger’s separate. A few, however, such as 29-year-old law student Stephanie Neuenschwander, questioned the seemingly capricious nature of the APA’s diagnoses.
Neuenschwander, a law student at the William Mitchell College of Law, brought her son to different clinicians over the course of three years. Every doctor gave her son an autism diagnosis, but “something didn’t seem right.” Finally, her son was diagnosed with bipolar disorder, which she said makes more sense in terms of her family history.
“It is well known that all of the thresholds are very arbitrary,” said First. Indeed, an autistic disorder diagnosis in the DSM-IV requires the presence of at least six out of 12 listed symptoms. Only five, and it might be PDD-NOS, with an entirely different set of expectations, educational programs and Social Security funding.
Furthermore, many symptoms “cross-cut” across disorders. People on the autistic spectrum often have attention deficit disorder or depression as well, according to 26-year-old Jamie Specht, a sign language interpretation student at Waubonsee Community College. Specht, who has a diagnosis of PDD-NOS, said the U.S. Substance Abuse and Mental Health Services Administration denied her application for services such as subsidized therapy and a caseworker.
“One of their criteria tends to be IQ level, and it has to be below at least 70. They hear us being articulate and their first response is, ‘No, we can’t help you,’” Specht said. “So, in Illinois, in some ways there may be an advantage to having an ‘autism spectrum diagnosis.’”
King said he is less optimistic about how the change will affect service providers. “When you have community resources that are so small, so underfunded, that have these specific criteria for who they serve, how do you decide who gets services now?”
Behind these pragmatic concerns looms a more sinister realization about what many refer to as the psychiatric Bible: In 1994, a select group of academic and clinical elites brought a community of millions out from the mind’s darkness, allowing them to meet others with similar experiences and receive mental health services. Now, only 16 years later, they are saying they made a mistake.
“I finally figured out who I am and now you’re going to take that away from me? Then who am I?” asked King, suggesting he will be part of an Aspie Roanoke that came together, thrived and disappeared just as suddenly into the pages of history.
King said he would continue to call himself an Aspie, as he is sentimentally attached to the word. Katie Levin, 33, will do the same, and calls herself an Aspie now despite being diagnosed with autism at the age of three.
“I still call the tall building in Chicago the ‘Sears Tower,’ even though they changed it. I still call the ballpark on the Southside ‘Comiskey Park,’ even though they changed it. I mean we can still call ourselves Aspies even if the book doesn’t say Aspie. We know what it is,” Levin said, punctuating her proclamation with a quick titter.
The APA is accepting public comments on the DSM-5 draft until April 20. Then the organization will begin field trials and revision of the manual used not only by U.S. clinicians and researchers, but also schools, courts and insurance agencies to identify psychiatric disorders.
Quiet in a thin, black robe, Brother Michael Oboza lives within and without the power of categories. Oboza is 34, a former male escort and trauma survivor, now a Catholic monastic and bisexual activist. When he’s not meditating, he might be handing out clothes to homeless transgender youth on the train in Chicago or strutting his stuff as a drag queen.
“I’m trying to put [these labels] all together, but it’s like the walking dead – fighting and fighting and fighting and it never ends. I’m getting tired, but I keep praying,” said Oboza.
“That’s the difficulty with the DSM in general. It pathologizes difference,” said King, who does not consider Asperger’s syndrome a disability, but a different, valuable worldview. “We’re all part of a human spectrum, of a greater continuum, where we all have different strengths and challenges.”
An Aspie Night In
