Wednesday, October 24, 2012

Understanding Autism Acceptance: A Parent's Perspective

Shannon Des Roches Rosa 
www.squidalicious.com

Sometimes I think I like sameness more than my son does. That's why a persistent hindrance to increased independence for autistic kids like my son Leo is parents like me overlooking opportunities for self-care and competence. Sometimes this happens because we find it quicker and easier to take care of breakfast preparation or our kids' tooth brushing ourselves, sometimes because in our day-to-day rush we forget to check in and see if new skills have emerged. It takes effort and vigilance to give Leo the chances he needs to demonstrate competence.

Like this past weekend, when Leo asked me for mango juice. I was about to pour it for him, but instead stepped back and asked if he wanted to pour it himself. Which he did! He even put the lid back on the carton (a twisting/screwing motion) with one hand while drinking his juice with the other. That's some serious bilateral coordination. Which I would have missed, had I not slowed down and handed over the reins.

I consider scenarios like this part of Autism Acceptance: being able to appreciate that it is totally fucking awesome for my nearly-12-year-old son to pour his own juice, without any bittersweet undertones. This is not denying Leo's reality, or mine, or the challenges of being an imperfect parent to a child who needs and deserves the best parenting possible. This is understanding what autism means for Leo, and adjusting to his natural patterns of rhythm and growth -- patterns which have nothing to do with most kids his age, but which are far from rare either currently or historically.

Part of the difficulty many people have with Autism Acceptance is understanding why it is not an attitude of surrender or denial, to which I can only respond with our own experiences:

I'm not only constantly vigilant about Leo's competence -- supporting and encouraging him to do his best -- but also his safety. When he's excited or upset, he likes to whoop and gallop away from me and doesn't always notice dangers in his vicinity. Dude, I'm on that -- who wouldn't be? When we're out in public, we're a hand-holding duo; if he's in an excitable mood, we stay home and he can gallop all he wants. Sometimes outings I thought would be successes are cut short. It happens. I accept that.

I'm constantly vigilant about his education and needs -- we're re-evaluating his ABA home program now that our state has mandated insurance coverage, and also pushing for an AAC evaluation. We're re-gauging his reading readiness. We've just finished setting up a special needs trust with the understanding that Leo's long-term educational and living needs will likely be different than many -- but not all -- people his age. While all of these things also require our effort and vigilance, none of them are tragedies -- they are Leo's realities. I accept them.

The most important part of Autism Acceptance for me, however, is understanding that Leo is not an empty shell, or a changeling. There is not some alternate Leo trapped inside his body, waiting to escape. Leo is here, right in front of me. Leo is Leo. He is the person he was born to be. He is his own awesome self.  

I accept and adore Leo just as he is.



A version of this essay was published at www.squidalicious.com.