I was diagnosed with Asperger’s syndrome in 2002, at the age of 5. You may be thinking to yourself, “That’s not a diagnosis anymore!” “Asperger was a monster!” or “What difference does it make?”. Or you may be someone else with that diagnosis, nodding in understanding for what you think you are about to read.
Changing diagnostic labels matter -- quite a lot, in fact. As a result of changing diagnostic labels, I find myself struggling to fit in not only in the neurotypical world, as one might expect, but the autistic or neurodivergent one as well.
The fact that I was diagnosed with Asperger’s meant that my parents kept me isolated, away from other autistic children and adults -- a decision that, in hindsight, I now see was ableist and autism-phobic, if you will. It was literally phobic (fear-based) -- they were afraid that I would pick up the habits of those around me; nature vs. nurture and all that jazz. As has been proven by my life, they believed incorrectly. I picked up those behaviors all the same, and instead learned that masking was a better option than acknowledging what and who you are, and having pride in it.
I learned that I had to act and appear neurotypical in order to survive in the neurotypical world, and suppress my autistic symptoms and behaviors. I believed I had to stim in a very discreet way, or possibly not stim at all, even when I desperately needed it. I believed that I couldn’t get overwhelmed or shut down in sensory-rich and overwhelming environments -- that it was wrong -- because none of the neurotypical people around me were.
In short, nature won out.
As such, I’ve struggled to take pride in my autistic identity for years and years, and am only just beginning to again. And now we’ve come full circle -- is it autism, or is it Asperger’s? Are they one and the same? Are they so far apart they can’t even be under the same umbrella?
Asperger’s removal from the DSM-5, published in 2013, and its subsequent replacement with pragmatic communication disorder and/or incorporation with autism spectrum disorder has left many without a sense of identity. In addition, now that the diagnosis is no longer recognized, many (myself included) have to be rediagnosed. Diagnosis as an adult is already fraught, and difficult in a busy and hectic adult life. In addition, with diagnostic labels changing, diagnostic criteria are as well, and this only adds to the difficulty of a rediagnosis.
There are also many (like myself) who have struggled with acceptance of their identity and Asperger’s, especially in a neurotypical world. These people, some of whom may very well finally be taking pride in their identity, have had that identity stripped away from them and have to get used to new words, new criteria, and even new ways of referring to themselves.
While I'm a little late to the party, Greta Thunberg is a good example of this concern.
Greta Thunberg, who has been in the news lately, and was named TIME’s 2019 “Person of the Year”, is a good example of this. She’s a Swedish seventeen-year-old girl who has been working hard advocating to help combat climate change. She’s also been diagnosed with Asperger’s Syndrome. When she said just that in one of her speeches, in a language that is not her native one, no less, she was harshly judged, criticized, and discussed online. She was in a situation that was no doubt incredibly stressful -- speaking in front of a large crowd is hard enough for neurotypicals, much less those of us on the spectrum -- and used a term many thought was wrong.
But does it matter if Asperger’s is on the DSM, or matter if people still want to use that terminology in referring to themselves? Some say the usage of “Asperger’s” creates a false binary around functionality and social acceptability -- people diagnosed with Asperger’s are the “higher-functioning” and more “socially acceptable” of people on the autism spectrum. Regardless of the fact that functionality labels are entirely mythical and don’t tell us anything about an individual’s needs, this binary is imposed by the neurotypical world, not us, the individuals diagnosed with Asperger’s ourselves. We are not the ones perpetuating it, and as such, should we really be required to give up terminology with which we’ve grown to identify and in which we've finally grown to take pride?
Does this terminology really matter, when we can all speak about experiences we’ve shared, struggles we all go through, and societal expectations placed on us all?
In a world in which you can be villified and judged for using the wrong terminology, it’s unsurprising that many people with Asperger’s and who are otherwise on the spectrum are afraid to speak up. But if we don’t speak up and share our experiences, not only will this false binary remain in place, it will prevent us, as a unified autistic community made up of incredible, unique individuals, from coming together in solidarity to thrive in a neurotypical world.