Monday, December 10, 2012

A Plea on Behalf of Aspies Everywhere: Keep Asperger Syndrome diagnosis in DSM5

The cover of my beloved brother Loren's autobiography, which came out 3 months after his sudden death of a heart attack at 63 years old. A memorial edition.  "If only we had known sooner."  So  many people said  this at his memorial service, where we talked about Loren's life and his forthcoming book, and especially after reading the book.
"We knew Loren was different," a friend from the Florida Trail Association said.
"But we didn't know what it was.  He was loyal, brilliant, a faithful volunteer, cleaned trails and hiked with us, and we just took him in. I wish I had known sooner what I know now."
Loren said the same thing, many times, after discovering a name for the disorder he had battled, alone, all his life.   
“The Asperger community is a big vocal community, a reason in itself to leave the [Asperger's Syndrome] diagnosis in place [in the new DSM5].” Dr. Temple Grandin, Colorado State University animal scientist

My brother Loren was a late-diagnosed Aspie. He lived with “a problem that had no name” all his life, and suffered for it.  

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). 

That’s why I join with of thousands of others like my brother, and many state and national Asperger's and Autism organizations, in urging the American Psychiatric Association NOT to eliminate Asperger’s Syndrome, as it has proposed, from the DSM5, the diagnostic bible of the profession, which is being revised in 2013.  

You can help by emailing Dr. Dilip Jeste, president, at apa@psych.org. The Psychiatric association is soliciting comments.  Feel free to use this column.   I am late in joining this raging debate; you'll find tons of research and information online, and lots of different people to contact.

The American Psychiatric Association argues that Asperger’s belongs under the diagnosis “Autism Spectrum Disorders.”  In a New York Times article, an autism expert at the University of Michigan, Dr. Catherine Lord, said that "Nobody has been able to show consistent differences between what clinicians diagnose as Asperger's syndrome and what they diagnose as mild autistic disorder." (NYT, "A Powerful Identity, A Vanishing Diagnosis," by Claudia Wallis, reprinted November 2012).  

"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 mec9066@md.cornell.edu)

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 rfournier@nationaljournal.com).  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:   

" I am 55 years old, and I finally have a name for the disorder that has plagued me from birth.  I have been living in a parallel universe, the conventional world on one side, my Asperger self on the other.  I filled the gap the best I could, stumbling along the way.  In my own world, in a cauldron of invisibility, I tired forging an identity.  After all the therapists and doctors (none of whom ever got it right), putting up with countless cutting and mocking remarks, trying all kinds of jobs, hating myself for over 30 years, I have a name for the disorder that has stalked me all my life.  A 100 pound weight that I carried with me all my life was finally lifted off my back." (Chapter 10, p. 85).  

Eliminating the Asperger's diagnosis will put that 100-pound weight back; it would be too much to bear. It would be harmful.  

"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.   

  


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