Tuesday, February 3, 2015

Do You Believe In Your Children?


Sometimes a parent of an Autistic child will dismiss what I have to say about autism. One would think that 47 years of living Autistic would give me some measure of insight, but they say, "you're not like my child. You are so high functioning. You drive a car. You have university degrees. You write so clearly and articulately. My child's autism is severe. My child will never do those things. You're so functional, I can't even think of you as having autism at all."

I've written a fair bit about how painful those kinds of statements are to me. I've talked about how dismissive it is of me, my experiences, my struggles, my failings and my accomplishments. Telling me I'm "not impaired enough" to even call myself autistic reduces me to a static snapshot of this moment in time -- worse, of someone else's perception of this moment in time. There is so much of me they cannot see in plain text on the internet. They have looked at one facet of me -- my facility with written communication -- and reduced my entire being to that single detail.

But today I want to talk about how harmful those statements are to someone else. Yes, they are insensitive and hurtful to me, but what is infinitely more important is that they are damaging to the child to whom I am being compared.

A child -- any child, not just an Autistic one -- is a work in progress. By this I don't mean that they are a someday-person. Every child is real and authentic and fully human in this moment, perfect just as they are. But they are also a sort of seed of the adult they will hopefully grow to become. And, to extend this analogy, think for a moment about how plants grow. If you could only see the seeds and bulbs and spores and had no idea what plants they would become, wouldn't you think an iris bulb held so much more growth potential than a sunflower seed? Yet, given time, the sunflower will tower high above the iris blossom. Tiny acorns grow into massive oaks, but before oak trees scrape the sky, that even smaller bit of dandelion fluff will take over the entire meadow, filling it with sunny yellow flowers.

The seed is not the plant. The child is not the adult. And children are such mysteries when compared to seeds. The experienced gardener knows how much harvest she will reap from a row of radish seeds, provided no accidents such as drought occur. A parent can give birth to a dozen children and still only have rough ideas of how that twelfth child will turn out, given no accidents that sway the course of the child's growth or cut it tragically short. Parents see things, many things, but not everything.

My sister (who happens to not be Autistic) was very gifted with mathematics in her teens. There came a point, in middle school, when my father could no longer help her solve problems, despite his degrees in chemical engineering. My sister was calculating problems involving things such as trains traveling through spiral tunnels. It seemed obvious to all of us in the family that she was destined to be a scientist or mathematician when she grew up. Her aptitude in the STEM fields was tremendous.

Imagine my parents' shock when my sister declared art history as her major in university. She went on to work for a non-profit protecting historical architecture before marrying and becoming a stay-at-home mom to two delightful little girls. She was an acorn that grew into a daffodil! I say that not to devalue what she has done. Hers is a well-lived and splendid life and daffodils have intrinsic value. But they are a shock when one expects an oak.

Children are unpredictable. Their life trajectories are hugely unpredictable. And, in many ways, Autistic children are even more so. Although I believe that autism is nothing new and Autistic people have always been among us (though unrecognized and called by other names) a clear understanding of what autism is and what the autistic lifespan looks like is still to come. These are uncharted paths that are in the process of being discovered by researchers, by parents, by Autistic people ourselves.

So . . . what is it that you are actually saying when you look at my life and say that I am not like your child?

In a very real sense, you are saying that you don't believe in your child. You are saying that your child cannot grow to be what I am, do what I have done. You are signing off on a package that has not been delivered yet. You are dismissing your child's potential for amazing growth and change. You are not just reducing me to a static snapshot. You are doing the same to your child.

Maybe you look at me driving long distances and then look at your 16-year-old who wants to drive but is not ready yet. You don't see that I was not ready to drive at age 16, either. I didn't get my license to drive until I was 25 years old. And even then, I was shaky and unsure whether I was making a wise decision or not.

Maybe you look at me writing detailed descriptions of my inner thoughts and understanding and then look at your 14-year-old who is writing surface descriptions of things and can't even explain why she does the things she does. You don't see that I was not able to begin to explain my actions or seek help for internal suffering until my twenties -- and not really in any meaningful way until my thirties. You see my blossoms and don't recognize that they are late blooms.

Maybe you look at me sitting in university lectures and passing exams and making the dean's list and then look at your 7-year-old who needs a one-on-one aide to be allowed to stay in a classroom at all. You don't see that I was hiding under the table and biting people in my first grade class and the teacher protested until I was removed from her classroom. I was still quicker with blows and bites than words at age 15. It has taken a long time and a lot of work to become a person who can deal with stress and conflict without exploding and lashing out. I dropped out of high school. I tried university at age 22 and had to drop out. I got my first university degree at age 40. I dropped out of graduate school. My trajectory has been anything but smooth.

So if you really do think that I'm not like your child, you should stop and remember that I am decades older than your child. And you should stop and ask yourself why it upsets you that I do think I am like your child.

I think I am like your child because I can see a kindred spirit in your child and because a doctor put the same word, autism, on my different way of interacting with the world as a doctor put on your child's ways. I think I am like your child because when I look at your beautiful child, I see a person but also a seed of the person to come after. I see potential in your child and I think it is magical and wonderful that your child is still being formed -- still forming herself. I see a million different paths your child's life could travel down and it is mysterious and I feel like holding my breath as I watch her grow.

If you think I am not like your child, I ask you: do you believe in your child? Do you leave the possibilities open? Do you nurture your child so that he feels safe to grow into the adult he is germinating inside himself?

If you believe in your child and you believe in your child's possible futures, I ask that you also believe me when I say that I am like your child. I am like your child and I think she is wonderful beyond the telling. Please, will you believe in her wonder and possibilities, too?