Masterpost: “Asperger’s Syndrome”, “Severe Autism” and Functioning Labels (And Why They’re All Nonsense)
Part 1: “Asperger Syndrome”
If you know a little bit about autism, you know that it’s a spectrum. Some people have very mild autism, and some have severe autism. Some are high-functioning or just have Asperger’s Syndrome and are able to communicate and live independently. Some are low-functioning and need help to survive.
I’m afraid all of this is nonsense, and the fact that it keeps getting perpetuated really hurts a lot of autistic people.
This is a topic we have a lot to say about, so we’re splitting it into two posts (watch for the second part very soon). First off, let’s deal with the term “Asperger’s Syndrome”. We get a lot of asks from people referring to characters with this condition. The problem is, it doesn’t actually exist. Well, the diagnosis officially did exist, but it doesn’t anymore. It is an outdated diagnostic term which is no longer used in the DSM and which is slowly being phased out around the world.
The idea behind the distinction was that there were different “types” of autism ranging from mild to severe. If you learned to speak at a normal (or early) age, were able to communicate in a relatively normal way, and showed an interest in making friends with other children, you were considered an “aspie” - a person with Asperger Syndrome. If you started speaking late or couldn’t communicate verbally at all, and showed no interest in others, you were autistic, which ranged from mild to severe. It was a way for doctors to sort autistic people into categories for the purposes of giving them a diagnosis - and giving them access to assistance. Generally speaking, people diagnosed with Asperger Syndrome got little to no access to assistance, whereas people diagnosed with autism were considered more disabled and given less freedom to care for themselves. On the other hand, those who were diagnosed “autistic” had to live with the stigma of having a severe disorder and were often denied opportunities.
Since all of these people were autistic anyway, it was sometimes hard to know who should be put in which category. The main diagnostic criterion was: if someone with autistic traits learned to talk before 3, they had Asperger’s. After 3, they were autistic. It was taken as a given that you could tell an older “aspie” from another type of autistic by their desire to be social. Spoiler alert: this was a totally arbitrary decision, and when a person learned to talk says nothing about how they function in the present.
So all of this is pretty much meaningless; a person is autistic or they are not autistic. Any one autistic person can have a completely unique mix of traits which is different from anyone else - it isn’t as simple as “this type are like this, that type are like that”. Mod Aira says:
“The very first student I helped to get diagnosed (and then worked as an assistant for) was a little boy in the preschool where I worked at the time. I pointed out that he seemed to be autistic, and my boss said, ‘we used to think that, but he doesn’t mind being touched, he likes playing with other children, and sometimes he makes eye contact, so now we know he can’t be autistic.’ I had to do a little educating with my well-intentioned but ill-informed boss, then we managed to get a specialist to come in and observe him. She was ready to diagnose him with Asperger Syndrome, until she talked to his parents and found out he didn’t start speaking until he was three years old. That meant she couldn’t diagnose him with AS, because that requires starting to speak at an earlier age. The woman was a little confused - how could he be autistic, not “Asperger”, and still be so social? This boy didn’t fit into any of the categories. (It was almost as though the categories were nonsense!) Fortunately, not long after that the DSM-V came out, doing away with AS entirely, and she was able to give him a diagnosis she felt fit him better - autistic, and then with a list of qualifiers.”
This change has been difficult for a lot of autistic people to deal with. Many who were diagnosed with Asperger Syndrome came to identify as “aspies” and to separate themselves from those who identified as “autistic”. Some people even lost their diagnosis altogether, since under the new specifications in the DSM-V, they are no longer considered “disabled” enough to merit a diagnosis. Many continue to refer to themselves as aspies despite the change. This is understandable, and a valid identity - but it’s important that the information get into the mainstream that there is no difference between different types of autism. Rather, there are differences between individual autistic people. Everyone is different, with their own mix of traits and their own unique personality, and there’s no use in trying to subdivide the community into categories in this way.
Speaking of categories, in our next post we’ll get into functioning labels, and the damage they do as well.
We hope this has been helpful. Happy Writing!