On average:
- 33% of people who have autism will develop epilepsy at some point in their lives
- 45% of people with developmental disabilities have at least one co-occurring mental disorder
- 75% of people who have autism have a parent with a mental disorder
These are not good odds. But in neurobehavioral research, it’s the perfect storm.
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At the age of eight I discovered my parents’ Encyclopaedia Britannica, a 30-volume set, and read each one. I learned about anatomy and geography and developed a love of history. I also became fascinated by autism. I read about epilepsy. Various mental illnesses intrigued me, especially schizophrenia and bipolar (then called manic depression). I started writing a story about an autistic girl who communicated via echolalia. I wrote another story about a pregnant girl who had schizophrenia. As I got older I began reading other books about autism (that I could find – not too many back then).
It was as if I somehow knew that I would find myself the captain of a boat in a perfect storm, trying to get over the next monumental swell. My son’s autism. His development of epilepsy. My diagnosis of bipolar. Then his. One neurobehavioral wave after another.
When I stop and think about it, I really wonder how he gets through his day, how he does as well as he does. As I know from experience, bipolar on its own can be horrible enough. Add a healthy dose of autism and some grand mals and you have the makings of I-think-I’ll-just-stay-in-bed-the-rest-of-my-life.
It isn’t pretty; it isn’t poetic. There isn’t some beautiful, poignant way I can write about it. Did I somehow know? Was my eight-year-old self subconsciously trying to prepare me for my future? Was God, or fate? (“Oh, so you’re interested in this stuff? Really want to know what it’s like? That could be arranged.”)
The sea has calmed a bit since we finally found the perfect pharmaceutical storm. I don’t even want to think about where we would be without anticonvulsants and mood stabilizers. Back in the days when autism and bipolar didn’t even have names, we would be in asylums. We would be those people you see in old black and white photographs, chained to beds or – God forbid – cement cells. We would be wailing, rocking, wishing for death. How could I know that? Because before medication, that’s what I was doing. Just not in an asylum.
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There are worse things than that trio of statistics. There are those even now who don’t have access to the medication that would alleviate their pain, and those who have tried many medications and still have not found relief. There are many storms besides our own, many boats at the mercy of nature. It is for them that I share my journey, and with it the hope that in some small way, it helps.
*Photo by Trevor McKinnon