There have been several articles in the mainstream media saying that people with Asperger's Syndrome are against the DSM-5 changes, which will get rid of the individual autism spectrum diagnoses, and just call everyone Autism Spectrum Disorder*. However, I have an Asperger's diagnosis and I support the changes, as do many other people with the same diagnosis. Many people with this diagnosis have identified as "autistic," "ASD," or "on the autism spectrum," for years.
I will explain some reasons for this. If you want to skip to the end, I have included links to some Asperger's people's blogs, where they express their support for the change.
1. Not every ASD person has an obvious case of either Autistic Disorder or Asperger's Syndrome. Because of this, there is a diagnosis, Pervasive Developmental Disorder Not Otherwise Specified, which is often given to ASD people who the diagnostician can't identify as having Asperger's Syndrome or Autistic Disorder. (This might be because the person seems to be in-between, because they are very impaired in some areas but not in others, or because they just don't quite fit the criteria for AS or AD. Some doctors have also admitted to diagnosing kids as PDD-NOS to avoid the stigma the child might experience if they were diagnosed with Autistic Disorder.)
Doctors make different judgments. Also, people change as they get older. As a result, many ASD people have multiple diagnoses. I was diagnosed with PDD-NOS and Asperger's, at 10 and 14, because two doctors had different opinions of me. One person was diagnosed with Autistic Disorder as a nonverbal child, but soon learned to talk very well, and was diagnosed with Asperger's as an adult. Another person was diagnosed with PDD-NOS when she was a teenager, but lost a lot of her language and self-care ability as she reached adulthood, and was given a diagnosis of Autistic Disorder so she could get better services.
It simply wouldn't be convenient for me to say "I have Asperger's or PDD-NOS, I'm not sure which" whenever I am talking about this stuff. So I started saying ASD out of convenience. This is why some people identify as ASD or autistic. But also, some people with an Asperger's diagnosis identify as autistic, because they think that the Asperger's criteria doesn't describe them as well as the Autistic Disorder criteria--or, they just dislike the word Asperger's.
2. Many of the PDD-NOS and/or Asperger's people who identify as "autistic" are involved in the disability rights movement. We feel that, not only is it inaccurate to say that we have a completely different condition from severely autistic people, it would be offensive. Because we experience most of the same symptoms, just in greater or lesser degrees, there is no real reason to say we are different, unless we are uncomfortable being associated with severely disabled people. Besides, you can always find Autistic Disorder people who are exceptions to any blanket statement you could make about what Autistic Disorder people can do--and the opposite is probably also true.
All people with disabilities are marginalized, but nonverbal autistic people are some of the most vulnerable to abuse. Because of the very depressing portrayal of autism in the media, our society lets parents, teachers, and institutions get away with a lot--giving people electric shocks, emotional abuse, and using restraints in situations where they aren't necessary. Some people who murder their autistic kids have even been met with an outpouring of sympathy and support.
When ASD activists criticize this kind of thing, our opponents often respond by saying, "You don't have severe autism, so you think autism is great, but if you understood how bad it was, you would understand why what's happening is okay." This accusation is made to people with Asperger's--but it's also made to people with other diagnoses, people who need an aide to help them take care of themselves, people who are chronically unemployed, people who didn't talk until they were 13, people who still only communicate by typing. Again and again, a line is drawn between "real" autism and autism that "isn't so bad," but for the purposes of rhetoric, the line is moved to exclude anyone who has disability-rights concerns.
So, there is actually a subgroup of ASD people who were delighted to hear about the DSM change, because it helps to undercut a line of reasoning that is often used against us. Some of us are really upset when we see so many Asperger's people quoted in the media, saying that they aren't like severely autistic people (one charming man stated that severely autistic people wear diapers, and he doesn't want to be associated with people who wear diapers).
I'm not a good talker. Here are some blog posts by Asperger's-diagnosed people saying the same thing. (There are some great posts by people with Autistic Disorder and PDD-NOS diagnoses, but I'm not including those given that the subject of this post is supposed to be "how Asperger's people feel." However I may have misidentified some bloggers as AS because not everyone states what their diagnosis is on their blog.)
Angry Aspies, Please Go AwayWhy insist you're not autistic?The Community Against Each OtherI Don't Want to Be Like YouMore Thoughts on Labels and How to Use Them*When people are diagnosed with ASD, they will be identified as having a certain level of impairment regarding communication and ritualistic behaviors. The often-invoked idea that mildly affected, verbal ASD children will be put in classes for nonverbal children, and the other way around, is not realistic. It will be clear what someone's level of disability is.
P.S. Some people are upset because they have an insurance provider that covers people with Asperger's, but not Autistic Disorder, and they're afraid they will lose their insurance because of the DSM-5. However, I know other Asperger's people who have a lot of trouble supporting and looking after themselves, who are very hopeful that they may now qualify for services that would help them manage their lives and find jobs. Like most college students, I don't have the life experience to really think/talk about these issues, and I don't know whether either thing is likely to happen.
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Comments (2)
Thank-you for this post. When my son was diagnosed, I was a little leary about putting a label on him and know other parents who feel the same. However, without labels, its almost impossible to get funding. My son is now 12 but was diagnosed at 5 1/2 and where I come from, Early Intervention is publicly funded until the child starts school. Having a label helped him get a classroom aide and has proven effective in getting coverage for other services as well and I don't know where he'd be, developmentally without this help. With the removal of Asperger's from the DSMV I fear he will fall between the cracks as his diagnosis is neither AND both Autism and Aspergers. His label is Autism Spectrum Disorder - Asperger's "like" but his NAME is Philip... and he still needs help no matter what the DSMV says.
Thank you for your insight ! I am writing my graduate thesis on this topic -DSM-V and the new Asperger's diagnosis criteria and it's controversy.