April is Autism Awareness Month and The Arc and Autism NOW are taking this opportunity to ask individuals who identify as being on the autism spectrum to answer this question: “What is your definition of autism.” Wendy Katz identifies as being on the autism spectrum. She is living in Louisville, Kentucky and pursuing a career in the human services field. Below is her personal definition of autism. Follow the conversation this month online using #autismaware.
How do I define autism? It is simple but the total truth: Autism is “The Matrix.” Seriously, it sounds cheesy, but I feel that one reason that I truly related to this classic film is for this reason. What is “The Matrix?” It is everywhere and colors everything, it is the world pulled over people’s eyes to blind them from the truth.
Granted in the case of autism, “The Matrix” is a metaphor: my autism is not a veil blinding me from the truth, but it is a tangible reality, which is everywhere in my world, ever so subtly coloring and altering the contours of my reality and woven into my very fabric in such a way that I am not aware of it and cannot see it. And though I am not blinded from the truth, sometimes my altered awareness does blind me to certain realities tangible to others, whose sight is clear.
Sometimes I am not aware, for example, of subtle politics and actions, which might limit my professional advancement. Other times I might miss the flirtations of a “friend” or the tension in some of my relationships. Some other times I simply cannot see the forest for the trees: I may be so blinded or distracted by a truly “loud” sound or smell that I cannot focus on the true interpersonal undercurrents of a situation. To stretch this metaphor, I may not be “blinded” to the truth, but at times I am “visually impaired”.
When people ask me about the differences between say a psychological issue such as depression or OCD and my developmental disability, the answer comes quickly and easily. There is no slightly off neurotransmitter in my brain that can be slightly tweaked to change my experiences. My very BRAIN is a different shape, and as Morpheus says in “The Matrix”, “The body cannot exist without the mind.” Autism isn’t a social impairment or a need for behavior modification: it is an entire reality, which for better or for worse I inhabit.
One way in which my reality departs from “The Matrix” metaphor, is that on rare occasions, it seems to truly be “for the better”. Sometimes I have a way of looking at the world or solving a problem that is so far outside of the box that it is a true gift. Other times, I find myself seeing straight through a truly smooth manipulator because I am immune to his or her charms. Autism isn’t always a curse but isn’t necessarily a blessing either; it is simply the world in which I live.
So which character would I be in the movie, extending the metaphor for “The Matrix”? I tend to pass well enough in everyday life that some think I was misdiagnosed or “beat” my autism or have such a mild case it “doesn’t count”. But the world I live in, the things I see, hear, feel, smell, touch, taste, and EXPERIENCE are still colored by autism. I have one foot in the “real world”, but I am no Neo; I am still bound by the rules of “The Matrix.”
I tended to identify with Trinity: a ballsy girl with a foot in both worlds, unable to shake “The Matrix,” yet at times able to see through it. I find that when I truly focus, though I still see the world through my own eyes, I can almost extrapolate to figure out the world as a neurotypical person sees it. At times, I feel like a lingual translator of sorts, and I find myself able to translate and explain things to people on both sides of “The Matrix.” I consider this both my “savant skill” when people ask and an invaluable gift.
I remember when the movie first came out, people asked me if I would have taken the red pill out of “The Matrix,” rather than the blue one which ended the “trip down the rabbit hole”. I told them that I would not only grab and dry swallow the red pill, but I wouldn’t bat an eye to see Morpheus and would have cried out in relief, “Oh that explains EVERYTHING!”
All joking aside, autism colors everything I do and all of my many accomplishments, failures, worries, hopes, and dreams. When people ask me who I would be if I wasn’t on the spectrum, I find myself unable to even answer the question. I have accepted that I will never know.