A possible change in the American Psychiatric Association's diagnostic manual has moms concerned.
Ronda Kaysen: It took Shannon Nelson eight years to get a proper diagnosis for her son Gavin. Along the way, he was thrown out of preschool, kicked out of football and soccer, wrongly diagnosed with Attention Deficit Disorder, medicated, attempted suicide when he was 8, and institutionalized. Finally, a psychiatrist gave him a diagnosis that correctly fit his problem: Asperger's syndrome.
"Instead of not knowing and not understanding, a lot of his behaviors now made sense," said Nelson, who lives in the Pocono Mountains in Pennsylvania.
Now Gavin has a mobile therapist who comes to his home, a behavioral therapist at school, and he's been taken off the ADHD medication that sent him into a suicidal depression.
"What's the point in a diagnosis? It's all in the way you approach treatment. Treatments for different disorders are entirely different," said Nelson.
But Gavin's diagnosis might soon disappear.
The American Psychiatric Association wants to eliminate the disorder from the next edition of its diagnostic manual, due out in 2013. Asperger's and another mild form of autism called Pervasive Developmental Disorder, Not Otherwise Specified (PDD-NOS) would be swept into a new umbrella term: Autism Spectrum Disorder.
The term "autism spectrum" is already widely used within the autistic community, but in the fifth edition of the Diagnostic and Statistical Manual, it would become gospel.
For parents like Nelson who spent years trying to find the right diagnosis and treatment for their children, the possibility that their child's diagnosis will simply vanish from existence is unsettling.
"I don't understand why they're going to group it all together," Nelson said. "You see kids who have autism and then you see kids who have Asperger's. I think there are some components to it that are the same, but there are others that are really different."
Asperger's has had a short life. It only showed up in the diagnostic manual in 1994. But in that time, it has become part of the lexicon -- and an important part of many people's identity. People associate Asperger's syndrome with children who are highly verbal -- Gavin spoke before he was 1 -- and intensely focused on a particular topic of interest. They're often very intelligent. Many children with Asperger's are diagnosed later in childhood, or not until adulthood, because their symptoms are so mild. However, they do share key traits with autistic children. They're often physically clumsy, and their language skills, although advanced, are socially inappropriate. Namely, they don't understand subtle, unspoken cultural nuances and cues.
"Parents, from what I see, they prefer their kids to be called Asperger's than to be called autistic because it sounds more acceptable and it sounds like it has a better outcome," said Dr. Pam Rollins, a professor at the University of Texas Dallas Callier Center for Communication Disorders and a member of the Texas Council on Autism and Pervasive Developmental Disorders. "But I think it's more true to your kid if you say 'he's on the spectrum, but he's high functioning.'"
On January 20, the APA will post its proposed changes on its website, opening them up to public comment for two or three months. After the public comment period, the criteria will be tested and the final changes will appear in the manual in 2013. In all likelihood, the proposed changes will spark a firestorm within the autistic community.
"We're very well aware that many people see Asperger's as their diagnosis. What we're hoping to do is to explain what that might mean within the general category of autism spectrum disorder," said Catherine Lord, director of the University of Michigan Autism and Communication Disorder Center, and a member of the 13-member committee considering the changes.
Parents aren't the only ones who are concerned about the changes. Some experts are too. There is concern that children with such a mild form of autism will not be diagnosed correctly.
"What happens to those people and their families who waited so long for a diagnostic label that does a good job of describing their profile? Will they have to go back to the clinics to get their diagnoses changed? The likelihood of causing them confusion and upset seems high," Simon Baron-Cohen, the director of the Autism Research Center at Cambridge University, wrote in an op-ed in The New York Times.
Baron-Cohen was not available for comment.
Supporters of the change say it's merely an issue of education. If pediatricians and parents are better educated about the wide spectrum of symptoms and behaviors that define autism, highly functioning kids won't get missed. Instead, they might get better access to medical and social services. And, with more people now diagnosed as autistic, a larger spotlight might fall on the disorder.
"We are really facing an epidemic here. This isn't a joke. This is possibly the most significant social issue of our time," said Dr. Robert Melillo, a professor of neuroanatomy and clinical neurology at Touro College and author of Disconnected Kids: The Groundbreaking Brain Balance Program for Children with Autism, ADHD, Dyslexia, and Other Neurological Disorders. Melillo estimates that autism rates have jumped as much as 600 percent since 1990. "If Asperger's was lumped under autism, I think that it might give people a better chance of educating the general public that autism has a very wide spectrum. It's one name, but there can be very different ends to it."
For Courtney Smith, the idea of a spectrum makes a lot of sense. Her oldest son, Andrew, was diagnosed with Asperger's syndrome when he was 7. Her youngest son, Kevin, was diagnosed with PDD-NOS when he was 2. Andrew and Kevin are polar opposites, but Smith, who lives near Philadelphia, sees their problems as two different expressions of the same core problem. Andrew is 11 and highly verbal, but Kevin, who is 6, speaks at a 3-year-old level. Where Kevin seeks out sensory stimulants, Andrew is averse to sensory stimulation. Kevin is cheerful and easygoing -- Andrew volatile and moody.
"I always say to people that both my boys are on the spectrum, but they are completely opposite and that's why they call it a spectrum," said Smith, who founded a ministry, Links of Love, for people with disabilities. "I get why they call it the same thing."
|Ronda Kaysen is a freelance writer. Her work has appeared in the New York Times, Washington Post, BusinessWeek.com, Architectural Record, Huffington Post, New York Observer and AM New York. She lives in Brooklyn with her family.|