Life on the Spectrum

Archive for October, 2016

The Problem with Being Labelled “High-Functioning.”

While I identify as autistic, my original diagnosis was “Asperger Syndrome.” Asperger Syndrome is usually identified as a “mild” or “high-functioning” form of autism. Many non-autistic people don’t understand why this is problematic. “Surely,” they say, “you would rather be high-functioning than low-functioning.”

In previous posts, I have described the problems with functioning labels: they divide the autism community, they try to fit people into neat little boxes that we really don’t fit into, and they make it sound as if those of us who get labelled as “high” functioning are somehow superior to those who are labelled “low” functioning. None of us is truly “high” or “low” functioning. We all have different abilities and different challenges.

There is also the perspective that those who are labelled as high-functioning don’t have problems. We’re sometimes seen as just being quirky or a little odd. It’s even become a popular trope of TV to have a character who appears (but is never identified) to have Asperger’s: they’re socially awkward (but in a “cute” way), they take things literally that are not meant to be taken literally, and they spout their knowledge of a particular pet subject, but in a way that advances the plot. They don’t get told to shut up or get ostracized from their peers.

In “real” life, as opposed to TV, even those who are labelled as so-called high-functioning autistics do have challenges. Our social difficulties aren’t seen as cute or quirky. Our specialized knowledge of a particular subject is seldom welcome at parties or used to catch a serial killer. We don’t have cool jobs as scientists or medical examiners or criminal profilers. Most of us are unemployed or underemployed. Many of us receive government financial assistance.

In general, autistic people are expected to do our best to “pass”. We are supposed to act as if we are not autistic. Not all of us can do this. Those who can do this find it can often backfire, because when we pass successfully, people forget that we are autistic (or they never knew it in the first place). Then, when an autistic difficulty suddenly manifests itself — saying something offensive unintentionally, misunderstanding what somebody said, assuming another person is being literal when they’re not — people don’t understand why we did it and think we did it on purpose or perhaps were trying to be funny. If we try to explain autism, we are accused of such things as “looking for sympathy” “exaggerating (our) problems” “making excuses for being rude” or simply “faking it.” What they don’t understand is that what we are faking is being non-autistic, not faking being autistic.

There have been times, probably too many to count, when I have tried to do what I think is the right thing in a situation, such as offer sympathy or encouragement to a person going through a hard time, only to find that I have still messed it up. If I try to show that I understand what a person is going through by saying that I went through the same thing myself, I am accused of being self-centred or making it all about me. When I think that I am offering support or encouragement by saying things I have heard others say, like “hang in there” or “take care of yourself”, I find that the person thinks I am trying to tell them what to do. When that happens, it’s no use saying that it’s because of the autism, because I will just be seen as making excuses.

To those who are autistic, I ask you to not label yourself as “high” or “low” functioning. Just say that you’re autistic. Don’t deny that you have challenges. For those who are not autistic, please don’t assume that an autistic person who can talk or can use a computer is automatically “high-functioning.” Please don’t use functioning labels. If somebody tells you that they made a social mistake due to autism, please don’t accuse them of using it as an excuse.