Sunday, January 3, 2010

The Wonderful, Wacky, Weirdo World of Autism...Trip to Detachment

I had a dream for my life. I wanted to be a healer, vital artist and force for good in the world. I also wanted to be married with a family. To a large extent I have successfully achieved this vision, but like so many things in life, I also got a lot more than I bargained for. Specifically, I got a son, now 18, who has a full-blown case of autism. His name is Peter.

I hate it when people say, "God must have known you could handle it, that's why He gave you an autistic child." Please, don't say that to anyone. NO ONE IN THEIR RIGHT MIND WOULD CHOOSE TO HAVE AN AUTISTIC CHILD!!! However I must agree, if learning to be more patient, more compassionate and more DETACHED from prescribed expectations is something my cosmic soul had to get in this lifetime, then a child with autism was a brilliant gift. It has forced me to be way nicer than I was ever meant to be.

Life with an autistic person is akin to living with someone on acid 24/7. For them, everything is shifted to the left, right, center, up, down, nowhere, everywhere and the usual common agreed upon reality that we all trust to BE reality has no foundation, wall or roof. Just when we think we have a grip on his condition, Peter will manifest some new behavior ranging from wonderful to terrible to funny to downright heartbreaking. Parenting him is a trip that never ceases to amaze me.

Now I'm not talking high-functioning Asperger's Syndrome here, I'm talking the kind of autism where everything is going great and out-of-the-blue your adult-sized child shrieks like a banshee and violently smacks himself in the head as hard as he can with both hands; SIBS, or Self Injurious Behaviors, is what they are called. "Shriek! Crack! Crack! Shriek! Crack! Crack!" It's horrible. We feel like we are living in a mine field never knowing when a bomb will go off. Frustrated, we are still in the process of trying to figure out where this latest round of freakiness is coming from. It's pretty new, just manifesting this Fall.

Could it be the effects of puberty and testosterone? Or maybe it's sub-clinical seizures, the kind that happen quietly without the convulsions. Or it could be another disorder that's coupled with the autism, like Tourette's or Bipolar syndrome, because that scenario does happen with some frequency and there's Bipolar in my family. Or is it Exposure Anxiety? ...a chronic fight-or-flight response brought on by changes in the environment. And which neurotransmitter is out of balance? Is it norepinephrine, serotonin or dopamine? I feel like we are always guessing and the experts don't know much more and offer little guidance. Our son Peter is an ongoing experiment and the last thing my husband and I want to do is to cause more problems with ineffectual therapies and medications. I'll never forget several years ago when we gave him a dose of secretin, a pig hormone that was being lauded as the latest and greatest cure for autism. Several hours after the injection he had an obvious seizure (never happened before) and he was noticeably depressed and upset for six weeks. My desperation for a cure scared the hell out of me.

The Universe is a funny thing, however, and there is some light. As despondent as our situation with Peter seems to be, one evening on You-Tube set me straight. I viewed video clips of very severe, completely non-verbal autistic teenagers being tied down to chairs, wearing helmets and protective gloves to prevent them from inflicting permanent injuries on themselves. "Oh my God," I thought, "that's really bad." Everything was put in perspective. At least Peter is loving and can speak (short sentences). And when he's not having a SIBS attack he's got lots of skills- always helping with the grocery shopping, laundry, cleaning and food preparation. (His salads are awesome!) So for now, my Buddhist sense of detachment has kicked in and I am, for the most part, able to keep from freaking-out. I can stand back and observe our situation with intelligent compassion. It helps to have a strong, sturdy mate to lean on. I really depend on my husband Will's indomitable spirit.

I don't know what straight, rigid, right-wing religious families do with their autistic children who break all the rules of life. For myself, I am thankful for all those hits of acid I did in college that opened my mind up to viewing reality from a different angle. Little did I know that the hand of Destiny was preparing me for my future and the trip of my life.


  1. I admire your insightfulness and love and calm in the face of the storm.

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