I always feel like I’m coming to a better understanding of the autism spectrum, though it seems to be taking years.
I don’t write much, but I think a lot. I’d taken fascination with a book about how the mind is more than the brain, and how much it relies on environment. I searched and searched for further reading, but I didn’t know what direction I was trying to go.
In searching for resources on Aspergers, furthering this idea of an “unorganized nervous system,” I landed on sensory integration and sensory processing disorder. Perhaps it took me this long to land there because every source of information on these things is completely focused on kids. (I’m glad for early intervention and I hope awareness of this grows even more, but it’s frustrating that adults are an afterthought.) I started reading Too Loud, Too Tight, Too Fast, Too Bright by Sharon Heller – it’s about sensory processing disorder, but since it came out before that official name, she calls it “sensory integration dysfunction” and people who experience it “sensory defensives.” It affects 80% of people on the autism spectrum, so it is a separate condition technically, just deeply intertwined with autism.
I believe this is the other half of Aspergers, the one no one sees or understands, which is why we think of Aspergers being only social awkwardness. This is a devastating misconception. Sensory issues make most life-things overwhelming, yet people who don’t experience this don’t understand that, so they tell “defensives” to get over it. Serious alienation, inability to cope, and emotional dysfunction results. Cognitive behavioral therapy (CBT) is heralded nowadays, but it hasn’t been effective for Gray and I believe it’s ineffective for ASD in general, because of sensory processing issues. Yeah, our thoughts lead to our emotions, but the other side of that is our senses, or bodies, how we FEEL physically also effects our emotions, and more powerfully if you’re sensory defensive because you can’t regulate the world around you or the way you process it.
So given the suggestion that maybe people on the spectrum can’t regulate themselves automatically, things start falling into place:
- why schedule changes are so hard
- why meltdowns happen
- why control over environment is so important
- why it’s truly not worth it to make him go to social events
And finally, why it’s not good to be idle. It’s tempting, when the world is at once overwhelming and underwhelming, to remove all obstacles. I desperately wanted to do this for Gray (and probably for myself too) in the wake of Oliver’s death, a traumatizing move to Ann Arbor at a crucial point, and a stressful seven months living with grandma. Remove all obstacles. But in doing that, I removed all possibilities for healing, treatment, movement, growth, and meaning. A man so brilliant, believing he can’t accomplish anything meaningful–that’s not okay, not what I wanted or intended.
The more I read, the more I realize how little I know about sensory issues and how to treat them. (But the mere idea that it can be treated has given me an amazing feeling of hope.) It seems to be a pocket of information that only belongs to occupational therapists. It feels, right now, like a secret code you need to figure out on your own, say the right words, call the right people. But I’m not going to give up.
It’s weird, but it feels like my urban planning interest has tied into all of this. Environment really does effect us. We’re not souls in containers, or stand-alone brains. We’re complex systems that overlap with each other and our world, and sometimes vestibular input does help with paranoia. Most of the time, starting the day with exercise and ending it with calm reflection really makes the difference. For everyone, not just the sensory defensive.