Dividing autism into high and low-functioning individuals

An Autistic's guide to autism: Beyond the stigma; disability can positively forge identity

I am a disabled person. Much of my life is dictated by the fact that I am autistic, and that therefore I am unable to do certain things easily. Being autistic dictates where I go to eat every day, where and with who I spend my time, in what places I can work and study and enjoy myself. If a food is too complex I cannot eat it. If a place is too loud then I cannot be there. If a statement is too vague, then I cannot understand it. As well, that which I consider in excess is just fine for the typical person. In short, because I am autistic there are things that are much more difficult for me then they are for the majority of other people.
And yet, I consider autism to be fundamental to my identity: to my internal conception of myself. When I give a presentation about autism, or write an article about autism, or just talk about autism in casual conversation, I try to make it very clear that I do not consider autism like an ailment that I am stuck with, but as a part of who I am. So much so, that I have changed the way that I speak about myself: from “a person with autism” to “an autistic person.” I also try to make it clear that I would not want to be any other way than I am now. Despite all the difficulties I experience because I am autistic, if some procedure were developed that would stop me from being autistic then I would refuse it (and vehemently at that).
Why?
Two reasons.
The first concerns the concept of disability itself. Having a disability is often associated with bearing a burden, or with withstanding a trial. When we speak and think of disability, we are often making the implicit statement that “there is something wrong with that person, because there is something that they have difficulty with, or that they cannot do.” Or put another way, “a person with a disability is to some degree broken.” I maintain that this is false. To have a disability literally means that one is limited in one’s ability to perform certain tasks or actions. That does not mean that the person with a disability needs fixing. Human beings should never be considered broken, because they never are. Not only is that conception emotionally harmful to individuals with disabilities, who grow up to think that they are broken, but it is a misunderstanding of what it means to be disabled.
The second concerns the specific nature of autism. As autism is neurological in nature, to say that someone is autistic is to say that their brain works or is arranged in a certain way. A device that claimed to “cure” a person of their autism would have to change—in a very fundamental way—the nature of that person. To “cure” a person of their autism would be to change the way that they process and perceive the world. To “cure” a person of their autism would be to kill that person, and replace them with a new, non-autistic person, who would then take up residence in the body of the deceased. As such, I consider my difficulties, numerous as they may be, a reasonable price to pay for my continued existence.

An Autistic's guide to autism: Self-regulation: how autistic people find alternative ways to cope

When I was young, around the right age for elementary school, I used to chew on straws. Chewing on straws was a solution to a problem that had been vexing my mother to no end. She used to buy me rugby shirts with soft plastic buttons. I would chew on them in class until they became flat disks under the repeated pressure of my jaw, losing the ability to keep my shirt in place. She tried to get me to stop chewing on my clothes by giving me shirts without the plastic buttons, but I only moved my attention farther up the shirt, chewing on the collar instead. Eventually she found a solution in plastic straws. They were cheap to buy in bulk, and served the same purpose that my shirts did.
When I have something with which to occupy myself, something to fidget in my hands or something to roll around in my mouth, I am better able to focus on tasks and feel calmer than I would otherwise. I only later learned that these and other behaviors of mine are widely practiced by other autistic people and are a common way that we autistics manage our anxiety and self-regulate. The clinical literature refers to these as “self-stimulatory behaviors,” but that is a long and cumbersome phrase, so it has been shortened by many to simply “stim behavior” or “stimming.”
For me, stimming serves best as a way of self-regulating. In the morning I wake up early, shower, brush my teeth and go through a stim-based systems check to get ready for the day. Sometimes my systems check consists of me wiggling around a bit to get an idea of how my body is feeling. Sometimes I circumambulate through my room. The regular and predictable laps around the small space free my mind up to plan for the day. On other days, I just make babbling, nonsensical noises—not so loud as to wake my neighbors—that give little jolts to my body that feel nice and help bring down my anxiety when I’m feeling stressed. All of this I do alone. This piece is probably the first time I have ever discussed my morning routine in a public way.
The only stim behaviors I ever engage in publicly are those that I can explain away as just a need to fidget. At a young age, I, like many autistic children, was taught not to stim, though not in so many words. I was taught that stimming was distracting, embarrassing or inappropriate and, in particular, that it was bad. Though there are certainly stim behaviors that have obvious drawbacks—such as self-injurious stims like pounding one’s chest—stimming is one of the best ways that we as autistic individuals have of self-regulating. In a world that we find overwhelming, stimming provides comforting and predictable sensory input. One day, I hope to see stimming more widely understood and accepted.

An Autistic's guide to autism

Dividing autism into high and low-functioning individuals

This piece represents the opinion of the author:

Ben York

Columnist

April 28, 2016

In the parlances of many medical and educational professionals, as well as among the majority of autistic and non-autistic individuals who speak and write about autism, autistic individuals are classified into two broad categories: those of high functioning and low functioning individuals. The stereotypical high functioning individual is often—though not always—a person who would be considered to have Asperger’s Syndrome. They are socially inept, often extremely quirky and with an interest in a subject so intense that they can often talk about nothing else. The stereotypical low functioning autistic person is much more obviously disabled. They may be limited in their ability to walk, talk or have any real control over their gross motor functions. Their intelligence will be low, and they will not be able to take care of themselves: they will, in short, be disabled.

Any actual discussions or characterizations of autism are of course more nuanced than this, but this portrayal of autism condenses a number of stereotypes associated with functioning labels (that is, high functioning and low functioning autism). While autism composes a spectrum of different behaviors and individuals, it is often lumped in this way into two categories: quirky and disabled. This imagined dichotomy is not only inaccurate but also at times harmful to autistic individuals, not only because it marginalizes the struggles of those who are well adapted, but also downplays the true strengths of those whose difficulties are greater.

First and foremost, functioning labels do not accurately classify or describe the autistic experience. Many autistic people do not fall anywhere near either of the boxes that functioning labels might place them in, so these terms do not provide accurate labels for them. For instance, a person who often passes for neurotypical, but in certain high stress situations is very limited in their ability to function. Or, take the autistic person who is mute and can’t make eye contact, yet writes masterful poetry and teaches online classes on writing. Or the autistic person who must use a wheelchair because they do not have full motor control, and yet has an incredible intellect. Functioning labels leave no room for these individuals, whose spectrum of abilities give autism its full name.

Secondly, and more importantly, the use of functioning labels reinforces an assumption about how people should be that is fundamentally incorrect. That is that there is a right and a wrong way for a brain to function. By using terms such as high functioning and low functioning autism, we make the assumption that there is a level of functioning that these labels approach, high functioning being closer to the ideal, and low functioning being farther away. However, there is no such thing as an ideal brain or an ideal way of being. That is what makes humans so diverse. And diversity is a great thing.

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