From the time he started school, he was marginalized, misunderstood, teased and bullied unmercifully for being “different.” No diagnosis, no intervention, no help. He wrote about it in his autobiography, An Asperger Journey: From Hell to Hope (2010).
"Nobody" means other researchers and clinicians like her.
Lord continues: "Asperger's means a lot of different things to different people. It's confusing and not terribly useful." She believes "mild autism" would be a better diagnosis. (Dr. Lord, c/o Melanie Cabrera at email@example.com)
I don't believe there are many Aspies in the world, or anyone who knows and loves them, who are buying into this view. Clinicians talking to clinicians, "experts" talking to a few of their own small circle.
"Mild autism" is not a diagnosis either. Nor does it cover an Asperger personality's unique social deficits AND assets. Loren was never diagnosed with it, and never would be. Nor are most people today with the same constellation of symptoms. Some clinicians and researchers predict that anywhere from 10% to 50% of people now diagnosed with Asperger's or autism would fall off the diagnostic spectrum entirely with the new criteria proposed for the DSM5.
Sure there are a lot of differences among people with Asperger's, just like those diagnosed with autism, just like humans beings everywhere.
But Aspies do share many common traits: they exhibit similar social glitches, ways of thinking and seeing the world, ways of absorbing knowledge and talking about it (and they can go on and on about many subjects), distinctive social, intellectual and brain wiring characteristics.
These characteristics are now, finally, recognized by families, friends, teachers, doctors and therapists. Equally important, the public has come to recognize them, including schools, state organizations, health insurance companies, and federal social security agencies. This is a critical aspect of the debate.
It was a battle to get this far; it would be a tragedy to undo these gains.
Experts can talk all they want about what they need for their own research agenda and the nature of the "autism spectrum," but frankly it doesn't mean much; it has little practical use.
Some of us even wonder if Asperger's syndrome should be on the autism spectrum at all.
My brother Loren wrote about living with Asperger's with painful honesty in An Asperger Journey. There are lots of great books, DVDs and other aides out now, since Tony Attwood published his pioneering book on Asperger's and the OASIS website was created.
An insightful recent description is journalist Ron Fournier's personal essay about his son Tyler in the National Journal (November 2012). It's one of the best descriptions of Asperger's I've read (available online or email firstname.lastname@example.org). Tyler sounds so much like Loren, amazing, bright, different, endearing. But how lucky for Tyler that his distinctive symptoms were recognized relatively early on, and that he is getting the understanding and intervention he needs, tailored to his particular situation.
Loren tells what it was like to get an Asperger's diagnosis, after years of struggling alone to understand himself and find a purpose in life:
"Do no harm," is a doctor's first principle: the Hippocratic Oath. Please, it took so long to recognize Asperger's. The diagnosis DOES mean something. It DOES have meaning. Leave well enough alone. Leave the Asperger's Syndrome diagnosis in the DSM5. Do no harm.