Why I Think of Autism as a Visit to the Amazon

Dear Autism (oh, and epilepsy, too):

Here’s a letter I never envisioned myself writing.

I don’t think anyone who has a child with autism truly admitted to themselves during pregnancy (and what a glorious time that was… *eyeroll*) that we might one day be navigating our way through the sweaty, remote, achingly confusing jungle that is autism, when we’d actually planned on a trip to Maui.

Of course, the Amazon also has breathtaking sights, exotic creatures and the piercing sounds of nature one cannot always pinpoint, but it’s nonetheless creepily dense, a bit frightening (snakes that can swallow a human whole?) and you’re utterly without a roadmap.

Autism, the reality is, you’re a disorder that both can and cannot be disentangled from the person who carries your diagnosis. My 5-year-old little boy, Quinn, can be distinguished from you, autism. He exists before you and far beyond; he’s not the sum total of your medley of symptoms.

At the same time, you have such a profound role in shaping his preferences and aversions, his ability to speak and his capacity to do or not do so many things.

However, so do his genetic profile and his environments.Therefore, while you might want to claim responsibility for all his features and characteristics, sometimes he avoids foods because my husband hates them too or has curious habits that are similar to mine (A consultant once observed a behavior, and I interjected, “No, no, that weirdness he gets from me.”).

Quinn is also a 5-year-old boy who attends an inclusive daycare, has epilepsy, a loving family, is an only child, lives in a temperate climate, comes from a middle-class family, has relatively educated parents and the list goes on and on.

So, autism, while you take up a lot of space in our lives with your constant requirements for therapies, modifications and understanding, I refuse to allow you to claim our son as your derivative, as your offspring, as your mirror.

He’s so much more, and the more I (and others) can remember and reflect on that, the less of a chokehold you’ll have on me or on him.

In closing, autism, I respect your role in our lives; I treat you with deference and understanding, and I certainly don’t hate you. But let’s also face it, while we have wide-eyed and courageously travelled this jungle, we have also not forgotten you’ve supplied us with a tent in the Amazon rather than a plush suite at the Maui Hilton.

Admittedly, I’m now accustomed to the tent, to mitigating the sweat and heat, the noises and the chaos, but I’m also more appreciative of its unique beauty, its moments of stillness and oxygen-rich life-giving perspective, and the fiercely devoted tribes who live here too.

For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post tocommunity@themighty.com. Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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