Autism Articulates
Hi. April 2nd is autism awareness day, and I have autism.
Autism describes a range of conditions that affect intellectual and social development in humans. As a spectrum disorder, it can manifest in many different ways — some profound and obvious, others nearly invisible. Some common characteristics include: difficulties understanding and following social and emotional cues; strange body posturing and movements; difficulties with eye contact; language abnormality; narrow and sometimes obsessive interests; rigid behaviours and preferences; atypical thinking strategies; hypersensitivity; and much, much more. It’s important to remember that every person with autism is different — sometimes with little in common. I can only speak for myself, so here’s what autism’s like for me:
I’ve struggled with many of the above. Social interaction does not come naturally to me —it’s as if I’m an alien from a different planet living among you. When I was young, I struggled to understand the subtleties that polite society depends on: taking turns in conversation, picking up on body language, gauging the interest of my co-conversants, reading “between the lines”, etc.. I developed a theory of mind later than other children; I struggled to understand that others have different minds, knowledges, and intents than my own, and still catch myself sometimes assuming other people know what I know. I would sometimes say things that others perceived to be hurtful or grossly inappropriate without realizing it, and struggle to get ideas across in an organized fashion.
Having noticed these deficiencies, I was fortunately able to find ways of compensating. By systematically studying facial expressions and body language, I gradually learned how to read the unspoken parts of language. Using my talent for mimicry, I learned how to emulate people with good social skills, and gradually developed the tools to pass as neurotypical. I think I’m pretty good at it now, but it’s still not an intuitive process — I’m essentially always “performing”. It requires conscious thought and effort, and can sometimes be exhausting. Being on-stage, or at the centre of attention is easiest for me since I don’t have to mediate the interaction. Structured group conversations like classrooms and discussion groups are okay as well, since the rules are clear and orderly. One-on-one interactions and small groups are easier now, but unstructured events like parties and pubs can be very draining.
Why am I sharing this? Not for sympathy or pity, but so you can understand. Folks like me who struggle in the social world might seem like everyone else, but the effort involved is immense…and sometimes we make mistakes. I’m hyper-vigilant of getting carried away while talking about one of my obsessions — sperging along at an audience either disinterested or completely lost. Sometimes I’ll misinterpret social context or misunderstand something implied (flirting???) and wander on oblivious to my situation. When I’m out of social energy, I simply *must* disengage. Solitude and rumination is the only cure for social overload.
On the topic of being overwhelmed, most of my senses are cranked up to 11. Bright lights, cluttered visual environments (especially crowds), loud noises, strong odours, and unpleasant textures can sometimes cause me physical pain. Most of my loud friends have experienced me telling them to stfu before. It’s nothing personal; I’m simply unable to tune it out or even order my thoughts when my environment is overwhelming. Even inside my head, everything is very intense — it’s easy for me to get engrossed with a thought or idea, causing me to suddenly withdraw from my surroundings.
Which brings us to the other side of the coin: the superpowers. Despite the challenges and drawbacks with the way I think, I’ve ended up with some useful talents. Computers and technology have always come easily to me. I learned to program in BASIC at the age of 5, and have always been the go-to computer fixing guy. I can visualize complicated systems in my head, readily drawing connections between interrelated concepts and forms. As my interests shifted, I’ve come to apply this conceptual reasoning to social phenomena — driving my budding career in academic social theory. Likewise, I’ve become quite good at expressing myself in language and stagecraft. I’ve been lucky, but it could have turned out very differently.
Like any other person, I’m the product of my upbringing and socioeconomic conditions. I had the good fortune to have received good nutrition and material support, a relatively stable home, supportive role models, and the freedom to develop into my potential. There are many others who receive no such privilege; whether by poverty, abuse, or simple neglect, people on the spectrum (and off it) can struggle to flourish.
Fortunately, we now live in an era where autism can be diagnosed and compensated for from an early age. Developmental programs, parental resources, counselling, and other tools exist to help people on the spectrum live rich, fulfilling lives. Research into the genetic, biological, and neurological causes of the condition continue to yield valuable information, leading to improved therapies and compensatory treatments.
But, and this is important: notice I did not say ‘cure’.
To want to cure something implies there’s something inherently wrong with it. You can cure a disease like cancer or the flu, but you can’t ‘cure’ having red hair, or being a raccoon. Autism is difference — like height, or ethnicity— and difference has value. We none are the same, nor should we seek to be. The world would be dull and lifeless if we all thought, acted, and organized our lives identically.
There are certainly some attributes that accompany the condition that are inconvenient. I’d rather not be driven batty by the sound of refrigerators, and dating would sure be a lot easier if I could understand these bizarre courtship protocols. For those who struggle with executive dysfunction, language deficits, and sensory disorganization (and their caretakers) life probably could be better. But what’s needed isn’t a cure — a cure means we cease to exist, and become someone else.
So, on that note: please do not support “Autism Speaks”. Don’t donate to them, no puzzle pieces, and skip the blue stuff. Their stated mission is to find a ‘cure’ for autism; to “end autism” — to end me. Most of their non-overhead funding goes to this research, and nearly none of it goes toward *actually* helping people with autism. Also, vaccines do not cause autism — there’s no link, no evidence, no doubt — just stop.
Instead of a cure, we need support: understanding, acceptance, tolerance, assistance, patience, care, and love. We need to know you ‘get it’, and are willing to learn how to help. We need you to explain when we misunderstand, and forgive when we make mistakes. We need you to stop being judgemental when a kid’s having a meltdown, and to be compassionate with a parent at their wit’s end. We need more research into ways to compensate for the challenges we face, and ways to solve the problems that are solvable. More than anything, we simply need to be.
With the right supports, most people with autism can lead any kind of life. You can find them in many professions — scientists, doctors, actors, writers, lawyers, priests, politicians, and more. They can be loving parents, friendly neighbours, and caring partners. History’s been built in part by people with autism — from Newton to Mozart, Jefferson to Gates. My autistic friends and I want what you want — a better world for us all.
The best thing you can do is to learn. Educate yourself on what autism is, what it looks like, and how to help. Even simple, individual acts of kindness and understanding can make a big difference in a person’s life, and you can be that special person to someone else.
