Being An Aspie

What Happens When Your Illness Stops Existing?

What happens when a disorder becomes an important part of your identity?

You make friends with other people with the same disorder, build communities, and share jokes with people who finally understand you. Life does not feel like a constant effort anymore. What happens when the said disorder stops existing?

That’s what happened with people with Asperger’s Syndrome in 2013. The APA decided to remove the syndrome as a separate diagnosis in the DSM-V. The syndrome was combined with Autism Spectrum Disorder and identified as a mild form of autism with little to no effects on the individual’s social skills. 

For the APA, autism was not a categorical disorder anymore, it was more of a spectrum. People could experience varying forms of its severity. The decision, naturally, did not go down well with the Asperger’s community. 

Asperger’s and Autism

Asperger’s was first included as a formal diagnosis in the DSM-IV in 1994. It described patients who had some characteristics in common with children who had autism but also marked differences. 

Children with Asperger’s displayed above-average intelligence and developed speech at the normal stage of development. They also had few impairments in social skills, unlike their counterparts with autism. What set children with Asperger’s apart though were some marked eccentricities: inability to comprehend sarcasm or puns, having a formal style of speech, and having deep knowledge about a very specific domain. 

Since its introduction in 1994, Asperger’s became a huge part of pop culture with the “misunderstood genius” trope becoming standing for an Asperger’s diagnosis. Online communities were formed of people who had received a formal diagnosis. 

“Aspies for Freedom” for example has 50,000 members after being started in 2004.

They are taking our identity away

When the DSM-V was published, Asperger’s syndrome stopped being a formal disorder. This was met with a wide range of reactions on social media from the “Aspie” community. The reactions ranged from fear and defiance to acceptance and reassurance. 

A major source of fear and rejection was being lumped in with the “autistics” who were seen as too dumb and shy by the Asperger’s community. It’s interesting when you think about it.

A community centered around acceptance of differences was afraid they would have to be treated on equal terms with the ‘autistics’

Others were certain that they will never stop calling themselves an aspie and that no “expert” could convince them otherwise. 

“I am an aspie, will always BE an aspie, and the idiots writing the stupid psych books should

come visit our world and see why it is that we don’t want them to get rid of our label.”

Some calmer voices claimed that the term “Asperger’s” had served its purpose and made the idea of autism a lot more palatable to the general public. For them, the term was outdated in a world that did not treat autism like a “curse” anymore. 

What I find most fascinating though, was the need for Asperger’s to continue existing as a diagnosis because it is a “cool” thing to have. 

“omission from DSM V could potentially undo all the good work that has been

done to make AS cool and make the public aware.”

This seems like an amusing characteristic of online communities where a disorder can be turned into something desirable and a “sign of superiority” if the community is strong enough.

You can draw parallels to how ADHD is depicted online today. Every quirk can be traced back to the ADHD brain which apparently gives people ‘superpowers’.

10 Years On

It’s been a decade since AS stopped being a formal diagnosis but the communities surrounding it continue to thrive. Some have accepted the “autism spectrum” identity while others continue to remain defiant and still call themselves “proud aspies”.

Away from the community, most laypeople don’t even know that Asperger’s is not a syndrome anymore. There are some interesting sociological insights into the role communities can play in building our identity. 

If we find a strong enough community, any trait, can become a core part of one’s identity. 

Any attack on this identity is more likely to be met with defiance and suspicion instead of acceptance. Understandably so as well. The fear of losing your community can overpower all your rational ideas. 

It will be interesting to see what happens with the same in the future. Will the “aspie” community become a part of the autism community itself (the neurodivergent community at large) or will it continue its admirable defiance of its identity? 

If you were in the position of a person with Asperger’s in 2013, what would your reaction have been?