In my last blog, I introduced the concept of “executive functioning,” where I explained that my inability to get basic chores done isn’t necessarily from laziness, but from a condition of my mind where I get overwhelmed by life itself and choose to conquer that anxiety by doing nothing at all.
Today, we’re focusing on a different type of functioning: high-functioning Autism and how I do NOT agree with the term.
You see, scientists seem to like to branch us off into two binary (or black and white) categories of Autism: high-functioning and low-functioning. High-functioning implies that you are able to appear as a neurotypical (an individual who doesn’t have a mental disorder). Low-functioning implies that someone has an intellectual disability.
While someone in a white lab coat and a stethoscope could argue that this is all there is to the high-functioning v. low-functioning conundrum, I would like to argue something entirely different: I am not high-functioning.
I am also not low-functioning either.
You see, Autism exists on a spectrum. It’s literally in the full name of Autism ─ Autism Spectrum Disorder. There are a million different ways Autism can manifest itself in individuals. And within each individual comes a wide spectrum of ways that Autism can be experienced.
I’m going to use myself as a first-person example. I was initially diagnosed as having “Asperger’s syndrome.” Asperger’s has often been tagged as mild Autism. This never made any sense to me. My experiences as an Autistic person is an omnipresent experience. I constantly have to remind myself that I am Autistic. This is not a bad thing, in my world. It’s no different than reminding myself that I have horrible astigmatism, and therefore need to put on my glasses first thing in the morning to be able to see.
However, by calling me high-functioning, someone is essentially making a complete series of assumptions that have little to no connection with the Truth ─ the Truth being that I don’t always feel like I’m a truly high-functioning individual. Going back to my blog on executive functioning, I’m not always able to function as a “normal” human being.
Here are a few main reasons why I hate the term high-functioning:
- SELF CARE: I miss out on taking regular showers, seldom change out my socks everyday, and consider brushing my teeth to be as difficult of a chore as cleaning the bathroom is.
- BRAIN FUNCTION: Anxiety is real when it comes to me and my Autism. In fact, for all I know, you can’t have Autism without Anxiety. It’s like Oregon without rain ─ when Anxiety is not present at every single second of the day, something’s just not right.
- APPEARANCE: I often get the comments of “you don’t seem like you’re Autistic” after I announce my Autism. It gets really annoying after a while, but you get used to it. Sort of like how tall people are fed up with being asked how the weather is up there. But I’d like to take the time to remind you that I am not good at being neurotypical. I am good at masking ─ the art of acting as a neurotypical person.
- MASKING: Masking is a form of survival, and I believe that “being good at masking” isn’t really that good of a talent to have. As an autistic individual, I am forced to find that perfect balance of “being normal” verses “being your genuine Autistic self.” This is something I have had an extremely hard time doing. I credit my love of fashion, my self-confidence, and the ability of celebrating my uniqueness in getting me to the point where I am right now in life.
In continuation of being frank, calling my Autism “high-functioning” is only good for the neurotypical’s point of view, if that. I don’t think that someone who knows nothing whatsoever about my life should have the ability to determine exactly who I am in two hyphenated words. Besides, this “high-functioning” term is only good for the neurotypicals who are trying to wrap their brains around “this complex thing called Autism.”
After doing a little research on the subject, it appears that the term high-functioning comes from using IQ scores as means of defining where a person lands on the Autism spectrum. Again, I would argue that this is looking at Autism in that black and white, binary way. This is definitely not okay in my book, when Autism is a wonderful spectrum of colors and diversity. (Because of this fact, Actually Autistic folks have adapted the rainbow infinity symbol as their sign of Autism.)
Consulting an Expert…
Katherine K.M. Stavropoulos, Ph.D. (Neuroscience in Transition), takes a closer look at the term high-functioning for Psychology Today. She took a look at a study of 2,000 Autistic individuals that determined IQ was a poor indicator of an Autistic person’s “behavior skills.”
“…we should not be using IQ as a proxy for adaptive behavior skills. We should not assume that just because a given individual with ASD has cognitive skills in the average range that he or she will automatically have adaptive behavior skills in that same range.”
Dr. Stavropoulos goes onto explain that when we use this system, we may not be fairly allocating services to the Autistic people that actually need services. In other words, if an individual isn’t “Autistic” enough ─ that is, they don’t show signs of an intellectual disability ─ they don’t get the help they need to lead successful lives.
Her conclusion is simple: “If ‘high-functioning ASD’ is based on cognitive abilities ─ as is often the case ─ it doesn’t accurately capture the experiences, needs, strengths, or weaknesses of a given individual. Not only might this term limit supports or services for those who might need them, but it can also be inherently offensive to individuals who would be considered ‘low functioning.’”
Perhaps the best example I have found is from an online comic: