You'll recall that most U.S. clinicians and psychiatrists use the Diagnostic and Statistical Manual (DSM) to measure Asperger's symptoms against the criteria in the manual in order to make a diagnosis.

In February 2010, the committee of doctors that revises and edits the DSM for the American Psychiatric Association announced that Asperger's Syndrome would no longer be a diagnosis of its own but would, instead, be merged into a category of Autism Spectrum Disorders in the DSM's fifth edition, estimated for publication in 2013. The implications of doing so are uncertain and have raised questions and concerns from physicians, parents, and individuals with Asperger's.

In Benedict Carey's New York Times article “Revising Book on Disorders of the Mind,” Dr. Michael First, professor of psychiatry at Columbia University, who edited the fourth edition of the manual but was not involved in the forthcoming fifth edition, expressed caution: “Anything you put in that book, any little change you make, has huge implications not only for psychiatry but for pharmaceutical marketing, research, for the legal system, for who's considered to be normal or not, for who's considered disabled.” Dr. First continued: “And it has huge implications for stigma, because the more disorders you put in, the more people get labels, and the higher the risk that some get inappropriate treatment.”

A Blending Mix

What happens if Asperger's “goes away” in terms of its clinical distinction in the DSM?

First, just because Asperger's gets blended with another category on the autism spectrum doesn't mean there's no such thing as Asperger's. It is still a legitimate experience and an authentic way of being, thinking, and comprehending the world. And it is still every bit as important — perhaps more so — for you and your child to familiarize yourself with an understanding and appreciation such as may be gained from the contents of this book as well as other resources.

Second, even though it may be adjusted with DSM-V, not every psychiatrist keeps current, and it may take some doctors an extended period until they become familiar with the new edition of the DSM and begin using it.

Self-Advocate Perspective

What does the proposed alteration mean for people with Asperger's and how might the change affect their ability to continue advocating for themselves?

Michael John Carley, executive director of GRASP (The Global and Regional Asperger Syndrome Partnership Inc.), and the author of Asperger's From the Inside Out, weighs the pros and cons of the issue:

The cons will all occur in the short term. Not only will many of our members struggle with a terminology that has regrettably carried with it different associations, but the social service world carries definite possibilities of chaos after the change is implemented. How many service agencies will deny benefits to our folks because the agency uses the old terminology, whilst the applicant uses the new? How many school districts will deny an appropriate education because they use the new terminology, whilst the family in need doesn't have the money to get a new evaluation that adheres to the DSM-V? How much money will have to be spent by disproportionately poorer folks to get that new evaluation? And how bad will the inevitable resentment be toward those providing diagnostic services, as they reap untold amounts of dough from the world's need to adapt to this new book? Lots of internal as well as external disarray.

The pros, however, are for the long term. GRASP has always advocated that the spectrum's complexity went against our very human need to compartmentalize. After all, it is really hard for the average Joe on the street to swallow the idea that people like Albert Einstein, Thomas Jefferson, and Emily Dickinson could possibly have different variations of the same condition as someone who might never speak (as in some with autism). But the fact is that every clinical attempt to draw a line in the sand where autism becomes Asperger's and vice versa has proved false in practice, mostly because in varying proportion, everyone learns and adapts as life goes on. It simply is that complicated. The stigma of the words “Asperger's Syndrome” still has a long way to go, but the stigma of the word “autism” is unfortunately, still very dark. This change may push us (or force us) all toward digesting how complex this condition really is, so that we stop looking for a “picture” of autism or Asperger's that reflects what we see in the mirror.

Many of GRASP's members diagnosed with Asperger's Syndrome refer to themselves as “autistic” or “having autism.” Others don't. I, personally, have always used Asperger's Syndrome to describe myself because that's what my two diagnoses called it (and I'm very careful not to assume that I'm a doctor). I also try to be cognizant of other's resentment, whether I find their reasoning worthy of my respect or not. But that doesn't mean that I don't cognitively agree with those diagnosed with Asperger's Syndrome who call them-selves autistic. It's just that being right is not always what's important.

As of this writing, how the proposed changes will or won't affect Asperger's Syndrome in terms of diagnosing, treating, supporting, and appreciating remain to be seen. But knowledge is power; please equip yourself and your child with as many strategies, tips, tricks, and coping tactics as possible (much of which are in this very book) in order to persevere come what may.