by Tucker Keel
As April begins this year, you may have noticed an increase in the visibility of issues and causes related to Autism—This is no coincidence, as April is Autism Acceptance Month! Previously, this has been called Autism Awareness month. The change may seem subtle, but it is an important distinction.
In a world where people would rather expose their child to every deadly disease we’ve tried to cure for the past century than risk them having autism, acceptance is more needed than awareness. Even one of the most prominent public groups for autism focuses its efforts on ‘curing’ this part of people and ignores the actual input of those on the spectrum (your daily reminder to boycott autism speaks and use red and gold to show support rather than blue). I’m hoping this article can provide a different narrative.
Before I further explain, allow me to introduce myself. I am gay and 23. I have a BFA in Theatre and am ungracefully fumbling through young adulthood, as most twenty somethings are. I am single (howdy gents) and have started a new 9-5 job in marketing. I play video games and read Shakespeare.
I am also autistic.
Autism and being autistic can mean a lot of different things. In popular media we tend to get two main presentations: The Impersonal Savant and The Severe Case. The impersonal savant is a character like BBC’s version of Sherlock Holmes. These characters are socially inept, either callous or awkward, but practically brilliant. This sort of representation is not without its flaws (do we only value and accept these character because of their genius?), but it is generally positive!
The Severe Case is a bit stickier. This trope features a character with more visible and debilitating symptoms. Kazan from cult classic Cube is my go-to example for this character type. This version of autism is often used for the purpose of making a character ‘unique’ and ‘interesting’—a great way for a neutrotypical actor to show off their chops. However, these characters are definitely not without merit. Though these sorts of representations can be scary and uncomfortable for some, and are the kind most often used to in scare tactics about autism, it’s important to recognize the reality that autism can be quite intense. These sorts of characters are also usually positive! Often they come with the ultimate message that even somebody different can be good or helpful, especially if their personal needs are respected!
Still, just because representation is positive doesn’t make it fully representative. Being gay, it’s not uncommon to see stories of my sexuality simplified and split into simple categories. It’s often the starting block, and a very important step in media, to begin with stereotypes and dichotomies. As well, we can’t negate the stories of people in our community just because they fit a stereotype. But, much as we’re breaking molds in queer representation in media, and widening the conversation, I want to help others understand that being autistic doesn’t put me in one of these neat categories.
These images of autism are not the only way to be autistic.
So what is Autism? Well, previously, doctors weren’t all that clear about it either. There were five different diagnoses that all comprised ‘Autism’—One of these, Asperger’s Syndrome, was the initial terminology used by my college psychiatrist, and ‘Aspie’ was how I identified for a long time. This essentially put me in the category of ‘highest functioning’ autistic. However, language and medical knowledge is changing on this subject. Asperger’s, and the four other distinct diagnoses have now all been grouped as one: Autism Spectrum Disorder. ASD is then further classed by levels of care, rather than levels of functionality.
The language of ‘high functioning’ and ‘low functioning’ has historically been used for autism, and for many other disorders. This language is dehumanizing and invalidating for many, essentially putting our worth as people and the value of our experience on how effective we are in an economic system. To be ‘high functioning’ is to be pretending or complaining too much, to be making a fuss when you don’t need to. To be ‘low functioning’ is to be hopeless and tragic, to not be worth the effort to fix. I have Autism Spectrum Disorder, and would be classed as Care Level 1 of three possible care levels. This language puts the focus on our needs, not on our personal ability. Care levels can change, just as ‘function’ can, and the goal is always the personal improvement and health of the individual.
For myself, and I believe for others in the queer community, the word spectrum will resonate. We are learning more and more than sexuality is a spectrum, that gender is a spectrum, and that a spectrum is rarely a sliding scale between two specific extremes. It is much the same for Autism, with many social, intellectual, and behavioral differences between individuals. Trying to encompass all of what autism is in one article would be as impossible as briefly explaining the myriad experiences of the queer community, and it’s equally complex in its interplay with other issues and how identities.
However, what I can present somewhat more concisely is my experience with this spectrum.
Autism is classed primarily as a social disorder. For me, this has definitely been the main struggle. Social interaction has been a delicate and highly concentrated effort, fraught with fear and confusion. I am now and always have been termed ‘weird’, but I don’t think most people realize how very hard I work to seem as normal as I do. When I am confused or overwhelmed by social stimuli, I can shut down: it becomes hard to form words, and making any coherent kind of facial signal or even eye contact becomes difficult or impossible. Anything I hear gets processed literally on the first take, so sarcasm, figurative language, and hints are often things I have to guess at based on context. Sometimes people will insist that I’m clearly angry, happy, or sad when that’s not how I feel inside, and I’m often equally baffled by the emotional reactions of others. I make strange noises, I lack volume control, and I often talk too fast. There are things that are still surprising to this day with how much sense they make in the context of my autism.
Despite these oddities, I think many people would believe that I am fairly socially adept. I am outgoing, I am friendly and, I think, rather charming! To be autistic is not to fail socially, or be unrestrained. In fact, it is often the opposite—It is to have different hurdles to overcome and learn to deal with, in order to come up to the same level of others. Especially in women, where social conditioning tends to start very early and be very strong, the ‘signs’ of autism are frequently restrained or controlled. That’s why a diagnosis one would expect to be even across the sexes is given 4.2 times more often to boys than girls, with many women on the spectrum not understanding their experiences until adulthood.
I don’t think any of us have been lucky enough to avoid the circumstance of pretending to be straight, or cis, or binary. You become very careful—You notice how you hold your hands, how you cross your legs, the tone of voice you speak with. In many ways, this experience is similar to being autistic.You always have to be ‘on’. I have learned that what is natural to me is not what is expected, that it can even be hurtful, and I have had to make adjustments. I am not upset that I have learned these social skills, and though I appreciate patience and understanding, I do not expect people to take my occasional failings as inevitable or excusable. I am glad I have been held to standards and grown as a person, even if it wasn’t always in the ways I would have liked. It has been hard work but I’m proud of how well I do with people.
We all strive to be better people and do better by others, and in that sense I’m just like anybody else.
I don’t want to end this article on a note of struggle. This is how autism is often portrayed, and it’s part of why it is so feared—who hasn’t heard the argument that parents don’t want their kids to be gay or trans because they just don’t want their child to go through that kind of struggle? This too has impacted the Autistic community, and is part of why self advocates are so often overshadowed by parents or guardians ‘enduring the trials’ of caring for their loved ones. So, allow me to say it clearly: Autism is not bad!
One of the most common topics when discussing autism is ‘savant skill’ and special interests. I have certainly benefited from that! I am proud to be a national merit scholar and strongly believe that my natural skill with standardized testing comes from being autistic, along with many other areas of expertise and interest. Beyond that, I think the added effort I need to understand and empathize with others has given me unique abilities to hear and internalize other people’s struggles. Lack of empathy is often discussed when addressing autism—Hyper-empathy, another common symptom, is not.
And, though autism is often associated with ‘left brain’ skills, my experiences on the spectrum have definitely shaped who I am as an artist. I am a natural mimic: Echolalia, or the unsolicited repetition of auditory stimulus, is often associated with Autism and something I personally experience on a regular basis. Not only verbal tics, but physically, I have learned to adopt and borrow movements. This was partially adaptive, as I had noticed or been told about (read: mocked for) my unusual gait and mannerisms. I encountered one of my major acting struggles in my inability to create the faces for anger and sadness. I practiced and copied and even watched myself in the mirror. I have continued throughout my life to widen my physical and tonal vocabulary with stolen gestures and voices, practiced and rehearsed. My hyper-empathy is also an aid: Though my natural reactions to the emotions I feel from my characters might not play on stage, I can let these feelings guide me in which copied display I can pull from my wheelhouse. These things come more naturally now when I perform, but I fully believe that the intentional effort I have to put in has helped my command of them.
So there you have it. My story for Autism Acceptance. Autism is a struggle, for some much more than others, but it’s not something evil or scary. It can have real benefits, even beyond what is stereotypical. I urge all of you to look at Autism this month, not with awareness, but with acceptance.
We are people, and we are not victims struggling against some disease, but are full and developed human beings for whom being autistic is an important part of our identity.
And I think all of us in the queer community can relate to that.