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Lecture Preview: What Happened to Autism and Asperger's?
Social work professor Kristen Linton will present the University Forum lecture, “What Happened to Autism and Aspergers?,” at 7:30 p.m. Jan. 27 at the Barrick Museum auditorium. The lecture is free and open to the public. Here she shares a preview of her talk.
Literally overnight, it happened. People who had received diagnoses of autistic disorder and Asperger's syndrome no longer had those diagnoses. At least according to the main psychiatric diagnostic authority in the U.S., the American Psychiatric Association.
Many of these people had accessed resources and created a life and identity based on their diagnostic symptoms. But in May 2013, autistic disorder and Asperger's syndrome were removed from the 5th and newest version of the association's manual used for all formal psychiatric diagnoses, the Diagnostic Statistical Manual (DSM). According to the American Psychiatric Association, which publishes the DSM, autistic disorder and Asperger's syndrome no longer exist. Instead, the DSM now recognizes a new diagnosis: austism spectrum disorder.
One big catch: Some people with previous diagnoses of autistic disorder or Asperger's syndrome may not receive the new autism spectrum disorder diagnosis. I state this directly to dispel this myth, which I have heard far too often over the last year and a half. Research shows that 10 percent of people with autistic disorder and 16 percent of people with Asperger's syndrome will not meet the new diagnostic criteria.
My research also has found that people with the old diagnoses are concerned about specific aspects of the autism spectrum disorder, yet supportive of others. Overall, they agreed that the previous diagnoses were not reliable. Participants in my research shared stories of doctor shopping for a diagnosis they that felt that they deserved. One reported, "Last year, I brought up Asperger's syndrome to my therapist and she told me I was schizotypal, which doesn't fit at all. I had to go see an Asperger's syndrome specialist on my own to get any sensible explanations.''
The new diagnosis name was of particular concern to people with old Asperger's syndrome diagnosis. They did not want to be treated like they were "full-on autistic." They noted that the general population seemed to assume that those with autism had low intelligence. Interestingly enough, this also is a myth since neither the old diagnosis nor the new included intelligence as criteria. The criteria for the new diagnoses include deficits in communication and social interaction and engagement in restrictive, repetitive behaviors. Thus, I would also like to dispel that myth: People with autism spectrum disorder may have just as much intelligence or lack intelligence as much as others.
Study participants also found the new diagnosis to be too simplistic in areas: "My social difficulties are my most significant symptom and have caused me terrible problems, but I don't think they are very accurately described when one simply says 'deficits in nonverbal and verbal communication.' That makes it sound like you have to be obviously strange or inappropriate in how you communicate socially, rather than just being lost at understanding the social dance..." Girls in particular were likely to report that they could "mimic" social behaviors, but lacked the ability to really build meaningful relationships. Diagnosticians should pay close attention to this fact since they will need to be sensitive to this ability while applying the Autism Spectrum Disorder diagnosis.
As we move forward with the new Autism Spectrum Diagnosis, we need to dispel myths about the assumption that those with previous diagnoses of autistic disorder and Asperger's syndrome will automatically receive the new diagnosis and that those with autism spectrum disorder are any less intelligent than others. Additionally, we should strive for diagnoses to be reliable and valid. As diagnosticians, we must be as accurate as possible in determining diagnoses and be sensitive to peoples' ability to "mimic" social behaviors and the complexity of their social dances.
About Kristen Linton
Linton received her Ph.D. in social work from Arizona State University, an M.A. in social service administration from University of Chicago, and is a proud alumna of the UNLV bachelor of social work. Her research focuses on disparities, including racial, ethnic, cultural, and sexual disparities, among people with various disabilities. She serves as a co-chair on the national Council for Social Work Education's Council on Disability and Persons with Disabilities.
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