Timing is everything. Less than three years after my son was diagnosed with Asperger’s syndrome — and just three days after I published a magazine article about his condition — the American Psychiatric Association dropped Aspies from the psychiatrist’s “bible.”
My reaction was typical: What does this mean for my boy? The news rolled into my inbox along with thousands of e-mails from Aspies and and Aspie families. Some readers recognized themselves or a loved one in my son Tyler. Other readers, including many not touched by autism, sympathized with my paternal battle to strike a work-life balance. Many saw themselves in the tendency to fit my beautiful round peg in a square hole.
A few readers cited the APA decision, which will lump Asperger’s and similar social-interaction issues under the autism-spectrum umbrella, and asked me, “What does this mean for my child?” The answer is I don’t know. The initial explanations are unsatisfactory. This from CBS News:
“The aim is not to expand the number of people diagnosed with mental illness, but to ensure that affected children and adults are more accurately diagnosed so they can get the most appropriate treatment, said Dr. David Kupfer, who chaired the task force in charge of revising the manual, and is a psychiatry professor at the University of Pittsburgh.
“One of the most hotly argued topics ahead of the revisions was how to define the various ranges of autism. Some advocates opposed the idea of dropping the specific diagnosis for Asperger's. People with that disorder often have high intelligence and vast knowledge on narrow subjects but lack social skills.
Some who have the condition embrace their quirkiness and vow to continue to use the label. And some Asperger's families opposed any change, fearing their kids would lose a diagnosis and no longer be eligible for special services.”
In order to bond with my son and help him put his social-skills classes to use, Tyler and I traveled to U.S. historical sites and visited with two former presidents (Bill Clinton and George W. Bush). The project helped me see Tyler through the forgiving eyes of others. If they accept his quirkiness — and they do — I should embrace it. And I have.
Reaction to Tyler’s journey has taught me that my family is not alone — we are part of a massive community of Aspie families who are getting support denied to generations past. Still, I ache for people who don’t have the time and resources, even today, to support their children. I will be watching how insurance companies, the government, and health care providers respond to the APA decision. This must not be a step back for Aspies. More from CBS News:
Lori Sherry, president of the Asperger Syndrome Education Network, told The New York Times in March, "Our fear is that we are going to take a big step backward. If clinicians say, 'These kids don't fit the criteria for an autism-spectrum diagnosis,' they are not going to get the supports and services they need, and they're going to experience failure."
But the revision will not affect their education services, experts say.
The new manual adds the term "autism-spectrum disorder," which already is used by many experts in the field. Asperger's will be dropped and incorporated under that umbrella diagnosis, which will also include kids with severe autism, who often don't talk or interact, as well as those with milder forms.
Kelli Gibson of Battle Creek, Mich., who has four sons with various forms of autism, said Saturday she welcomes the change. Her boys all had different labels in the old diagnostic manual, including a 14-year-old with Asperger's.
"To give it separate names never made sense to me," Gibson said. "To me, my children all had autism."