No more Asperger’s: proposed changes to the DSM-5

With 19 words, a work group of members of the American Psychiatric Association proposed this week that Asperger’s Syndrome would no longer be a separate diagnosis.

“The work group is proposing that this disorder be subsumed into an existing disorder: Autistic Disorder (Autism Spectrum Disorder),” according to the proposed change on the APA’s DSM-5 Development Web site. Such a small sentence has caused an eruption of articles, commentaries and blog posts by members of the Asperger’s community and the news media. 

As early as last November, The New York Times reported this proposal.  The article predicted the range of reactions the proposal’s release would have.  Tony Atwood was quoted as saying that the public has a “neutral or fairly positive view of the term Asperger’s syndrome.” 

 Some with Asperger’s syndrome have fears that this positive association will be damaged once Asperger’s is officially merged into the Autism Spectrum Disorders category.  
CNN, in “Move to merge Asperger’s, autism in diagnostic manual stirs debate” quotes one mother of a child with Asperger’s: ” ‘If I call it ‘autism,’ that’s going to raise a lot of red flags for people who don’t know him,’ said Brown, author of the novel about autism ‘There Are No Words.’

Asperger’s Officially Placed Inside Autism Spectrum  was the headline this week from National Public Radio (by Jon Hamilton).  As some commenter’s pointed out, this was not technically correct, as the proposed changes are just that, proposed, and not official yet. 

The APA is taking comments from any interested parties.  The changes do not become permanent until a complicated process of proposals, field trials, drafts and revisions are completed.  According to an overview of the process on the DSM Web site, “release of the final, approved DSM-5 is expected in May 2013.” (Log in on the DSM Web site link above to make comments to the APA about the proposal.) 

 While interesting to some, these proposed changes can have great consequences for someone with Asperger’s:  

1. Diagnosis is the key to getting help, like insurance coverage, government benefits and qualification for programs in schools and colleges.  While some states already treat Autism and Asperger’s equally for benefits, all do not.  Inclusion in a wide category of Autism Spectrum Disorders could make it easier for students to qualify under Americans with Disabilities Act guidelines.  What it doesn’t guarantee is an easier time negotiating the individual education plan for each student.
2. Identity issues.  There is a large and growing Aspie community who see themselves as a distinct group, separate from others on the spectrum and different from those in the norm, often called Neurotypical by Aspies.  Those on the higher-functioning end of the Autism Spectrum have developed a sense of community, often enhanced in an online environment.  The lack of an official diagnosis of Asperger’s Syndrome could make it difficult for inclusion of new generations of Aspies, or, it could make it easier to include those who have been in an undefined border area of high-functioning, but not officially Asperger’s.  For instance, inclusion on some online list-serves requires that a person be diagnosed with Asperger’s Syndrome.  The community should be prepared to negotiate these issues.  The NPR story notes that some Aspies have trouble with the Autistic label. 
3. Getting diagnosed.  Will it be harder for someone who would have qualified under the Asperger’s Syndrome guidelines of the DSM-4 to gain a diagnosis of Autism Spectrum Disorder under DSM-5?  The rationale for the changes on the DSM-5 Web site includes the assurance that those who would have been diagnosed under the old guidelines for Asperger’s syndrome will be included in the broad Autism Spectrum Disorders diagnosis.  It does say that anyone whose symptoms don’t impair them in their lives, but “who seek out a diagnosis of ‘Asperger Disorder’ in order to understand themselves better” will not be under the diagnosis.  They never were, since an Asperger’s Syndrome diagnosis currently requires that the symptoms cause “clinically significant impairment in social, occupational, or other important areas of functioning.”   

……
The workgroup argues that Asperger’s is not significantly different from the high-functioning end of the Autism spectrum and that separate diagnosis or treatment is not warranted.  It appears that this is the basis for the proposed changes. Asperger’s Syndrome has always been noted as on the Autism Spectrum. The key differences are variation in intellectual functioning and communication abilities.  The APA workgroup has determined that the differences are not reason for a separate category, since all persons on the spectrum vary widely in abilities and impairment.  They hope diagnosis, treatment and management of those previously categorized as having Asperger’s Syndrome will be improved by the change. 

What do you think?  How do you feel about the proposal?  What are your concerns?  Do you have any experiences with trying to obtain services that could have been better or worse under the proposed guidelines?  Will you still call yourself Aspie or identify your syndrome as Asperger’s? 

Don’t be mean. Be positive. Be yourself. Share. Teach.

Tags: Access to Benefits, Asperger's Identity, DSM-V