Journeys with Autism

I’ve been pondering the fact that while neuro-typicality is considered “normal,” autism is considered a medical condition. This lack of balance bothers my autistic soul, which craves symmetry, integrity, and basic fairness.

Perhaps, at some future date, autism will be removed from the DSM, much as homosexuality was entirely stricken from its pages in 1986. I don’t expect to see this development in my lifetime. The scare tactics of organizations like Autism Speaks; the ways in which scientific researchers have appropriated our voices; the fact that we are the subjects of medical and psychological “research” to find “treatments” and even a “cure”; the propensity of so many people to define only one way of thinking and believing as “normal”— all these factors mean that the struggle for respect and empowerment will be a long and difficult one.

Even before I knew that I was autistic, though, I got the message that something was “wrong” with me. Whatever it was, it had to be “fixed,” preferably with the help of medical professionals. I’ve defined the problem in a number of different ways over the course of my lifetime: insecurity, self-loathing, difficulties with trust, anxiety, depression, loneliness, failure to find “community,” a relentless inability to sit down and shut up when told to do so, a tendency to go on and on and on about the topics I’m passionate about, and anger at things that other people just shrug off. After nearly every conversation I’ve ever had with anyone, anywhere, I’ve thought, “Did I do that right? I hope so. I’d better replay the whole thing and make sure I wasn’t too much of an idiot.” I knew that while other people were going home and thinking about what a nice time they’d had, I was obsessing about whether I’d screwed up.

Well, my dear friends, I am happy to tell you that the idea that I’m broken is on its way out. I can’t say that it’s gone entirely, or that it won’t re-emerge at a later time, but today, right now, I know that I am so much better than fine. I know that I have a gift—the gift of being autistic. In another culture, at another place and time, I might have been honored for this gift, and I might have been given wise counsel for where this gift might lead me. As it is, I’ve had to stumble along until I just couldn’t stomach the idea that I’m broken anymore. And then, a new world began opening up to me.

I first noticed it happening when my ASL tutor came over a couple of weeks back. She is an artist, and she teaches art at the school for the Deaf. She was born with tinnitus in both ears, so she can hear and speak, but it’s quite difficult for her in many of the same ways it’s difficult for me. She doesn’t like being around crowds of people, because it’s hard for her to pick out what people are saying. So, using a combination of signing and speaking, we got to chatting about a number of things, including art, and I invited her to take a little tour of my house. We have a lot of artwork in this house—not just mine, but paintings by Bob’s grandfather and grandmother, some Ethiopian embroideries, my daughter’s photography, and a number of old ancestor photos. My tutor really loved looking at all the artwork, and she was so direct, so honest, and so enthusiastic in her responses that I felt even more comfortable with her than I had before. The similar ways that we process sound and speech seem to lead to a similar need for directness and friendliness. It’s as though we both know there is little time to waste with anything else.

Then, I got together last Sunday with my new Aspie friend who lives nearby. I was thinking that we’d spend two hours together at the most, but the afternoon just kept on going and going. When I got home 3 ½ hours later, I was tired, but not “strung-out-and-running-on-fumes” tired. I got home and thought about what a nice time I’d had, just like a regular person.

How did this happen? Well, first of all, I knew that my friend thinks as I do: associatively and intuitively, rather than linearly and analytically. It’s not that we can’t get all linear and analytical; we can, and we do. But before we get there, we’re free associating and intuiting connections all over the place, and it’s great fun. That day, being in the presence of someone else whose thought patterns are like mine took away a great deal of social anxiety. I knew that I could just relax and let my mind do what it does. So, for example, when I had a story to tell, my friend gave me plenty of room to tell it. Sure, I repeated myself, and made leaps of logic, and went down some little incidental and tangential byways, but it was all okay. And when she spoke, she did the same things, and I gave her plenty of space to express herself. Can you say “social reciprocity”? And the best part was that, as a speaker and as a listener, I didn’t feel compelled to follow any kind of linear logic, because we were engaging in a different kind of logic altogether. What a relief! It’s so tiring to try to follow most conversations because their form is so alien to the way that my mind works.

Needless to say, it felt perfectly okay to engage in apparent non-sequiturs that day, knowing that my friend understood that these non-sequiturs were simply the result of the way I think, and did not signal disrespect or lack of interest in what she was saying. So, at one point, we were looking at the fun stuff on her refrigerator, and the next moment, I turned into the living room and started (metaphorically) tripping on this very cool table she had placed by the window. It went something like this: “Your boyfriend seems like a wonderful person, and I love the Halloween costume he’s wearing in this picture and…WOW! Look at that table! I love it. It’s got a place under it to hang glasses, and a cloth holder below for wine bottles, and…Wow! I just love such compact, multi-purpose stuff, you know?” Did she look at me like I was crazy? No. She showed me the hidden place for the ice bucket.

My new friend is also the person who recommended that I read The Cosmic Serpent by Jeremy Narby, a book that has broken open my visual thinking and my love of texture, pattern, color, and image. Suddenly, I’m making art nearly every day. Do most people do that? No. Does that mean there’s something wrong with it? Of course not.

My ability to engage the world associatively, visually, intuitively, and empathically is a great gift. My passion for balance and for justice is a great gift. My ability to enjoy solitude is a great gift. My ability to create things of beauty is a great gift. The intensity with which I feel things, hear things, and see things is a great gift.

None of these gifts are easy. Having a gift does not necessarily make life fun. In fact, having a gift and not knowing how to use it can make the world a cold and lonely place. Most of us live in a culture that pathologizes our way of being, rather than giving us support for using our gifts. Many of us wander in the wilderness for most of our lives, wondering where the hell it is we’re going. It isn’t fun, but having fun is not the same as knowing joy. Sometimes, finding joy is hard work and takes a lifetime of wandering. But to be able to value one’s own gifts, on their own terms, without reference to an arbitrary idea of “normal,” is the beginning of joy.

There are times that I feel so changed that I don’t recognize myself. Who is this person making art with a high-temperature glue gun and pieces of an old camera? Who is this person who has suddenly discovered that hand-stitching a quilt is a calming and centering practice? Who is this person who thinks associatively, and rambles on, and knows that far from something being wrong with her, something is very right with her?

It’s me. I’m an autistic person who has finally figured out that I don’t need to change. I just need to be.

© 2009 by Rachel Cohen-Rottenberg