Touch of Grey

I’m not sure whether to say “I have a touch of autism” or “I’m at the very edge of the autism spectrum”. But there it is, plain and out in the open for everyone to see. Totally exposed and vulnerable.

I was tested for it last year. I’m in the range of just barely detectable.

When they had me my parents were over 40. I also had childhood epilepsy, which stopped presenting symptoms as I grew up. Both of those things have strong ties to autism. If they tested kids for autism back then as much as they do now, I probably would have been tested.

I don’t know how to talk about it, really. When you think of someone with autism, you probably don’t think of someone like me. So I’ve been reluctant to tell people. I’m a whole lot more comfortable writing about it. If you wish I had told you, I’m sorry. Right now I’m just wondering if some people reading this won’t believe it.

But I do have a lot of the traits associated with autism, it just wasn’t clear until I found out. That’s how life is sometimes, like a difficult riddle that you can’t figure out. Once the answer appears you realize it’s been really clear the whole time.

Sometimes I pay attention to the wrong things. Sometimes my memory picks up the weirdest details and forgets things that should be easy to remember. And I get lost very easily. I’ve been known to hurt myself when I’m really upset. And I’m sensitive to sound, simple things like hearing music while I’m in a conversation is challenging for me.

In social situations I don’t always know how to behave. And sometimes I stare at people. There are aspects of social interaction that are just common sense for other people, things that everyone knows but no one talks about. Those are the things that are lots on me. For the longest time I believed I just had social anxiety. But it’s a little more complex than that.

I suspect my affinity for meditation and other contemplative practices is directly tied to how my brain works. I sit and read books on meditation and Buddhist practice all the time. That’s not because I’m a perfect Buddhist (I assure you I am not). It’s because that’s what interests me.

In ancient cultures people like me had special roles as shamans, fortunetellers, or monks.

Just a little different.

It’s really really helped me understand myself  a lot more.

Anyway, I didn’t write this as a plea for attention, although I wonder if someone reading this will think that. I wrote it so that if there are other people like me they won’t feel alone. And because the only way to remove the stigma from things like this is to talk about it.

 

When I was nineteen

I was nineteen years old the last time I had a seizure.

I was in the hospital with pneumonia for five days. It was the first big thing to happen in my life since the loss of my parents, I think.

I spent five days in and out of consciousness with a heavy fever that kept coming back and going away again. And I had three seizures.

It was really scary. I thought I was going to die.

That happens. Some people have seizures when they have really high fevers. It happened to me because I had childhood epilepsy. It’s not really right to say “I had it.” I have epilepsy. I just haven’t had a seizure in almost 20 years.

A significant number of children born to women over 40 develop birth defects. Both my parents were in their 40s when I was born. And I was born with epilepsy.

I had what’s called grand mal seizures as a baby and less severe ones as a young child. I was put on a medication called Dilantin. I don’t remember how often I had to take it, but I remember very clearly that it didn’t taste as bad as a lot of other medicine.

I stopped taking Dilantin as a preteen and my seizures did not return, until one day in a hospital bed when I was nineteen years old and afraid I was going to die.

Something like 20% of people that suffer from childhood epilepsy also develop autism or autism-like symptoms. This isn’t hard to imagine if we realize that seizures sometimes re-shape the brain. If your brain is reshaped, your neurotype can be altered.

It took me a long time to realize that childhood epilepsy has had an impact on me.

The philosopher Terence McKenna said this:

“In archaic societies where shamanism is a thriving institution, the signs are fairly easy to recognize: oddness or uniqueness in an individual. Epilepsy is often a signature in preliterate societies, or survival of an unusual ordeal in an unexpected way.”

In many ancient societies it was believed that when a person had a seizure, they were entering the spirit world, seeing hidden truths. Sometimes children with conditions like mine would be taken away and raised to be shamans or oracles.

I don’t think I entered the spirit world when I had those seizures, but I do think they changed me. I see things a little differently. I think that explains my fascination with Buddhism and other mystical paths.

That’s all I’ve got for now, but I’ll probably be writing more about it in the future.