This past summer marked a significant milestone in our journey with autism as we passed the 10-year anniversary of our oldest son’s diagnosis. July 2, 2002 is certainly a date that will remain permanently etched in our collective memories as parents. You never forget the day your child is diagnosed with autism. I remember everything about that day – even the pattern on the doctor’s necktie. I kept looking at the necktie instead of directly at the doctor trying to keep from tearing up. I knew I needed to be focused because this was going to be hard and I needed to be strong. Really strong. Looking at his necktie helped keep me calm.
We walked out of Children’s Hospital that day with the same wonderful little boy (now age 13!) we walked in with, and also with the emotional juggernaut of being thrown into a world we’d never navigated – not knowing what was ahead, and yet also knowing that we needed to step up in the biggest possible way to do the best possible job parenting our son.
Looking back there are so many lessons learned – I can’t possibly touch on all of them in one blog post. There are large lessons about patience, endurance, empathy and unconditional love. And smaller lessons, too, like the best way to teach getting dressed or brushing teeth to someone who has a hard time with motor planning.
Recently I came across a wonderful Facebook page written by a woman named Karla. And reading her posts brought to the forefront an issue we grappled with, particularly early on, with our son – the issue of fairness. Because there is a really tricky balance with parenting and autism: how much do you accept the person with autism for who they are and embrace their autism, and how much can/should you help them through therapy or other strategies so that they can learn to navigate a world where most people don’t have autism.
Karla’s ASD Page gives parents and the non-autism world a glimpse inside the thinking of a person with autism. Her poignant and at times biting commentary describes what life is like with autism. She makes a compelling case that life with autism can be a rich and rewarding one, not just second-best or runner-up to a “normal” life. By offering this glimpse inside her world, Karla shows us that an autism life is a viable if not a remarkable thing. Part of the problem as she sees it is moving the non-autism world toward a better understanding of how people with autism view and experience the world. She characterizes her mission as “not fighting autism, but working with it.” Amen.
I highly recommend following Karla’s AD Page on Facebook. She gives people with autism a voice, and those without autism need to listen.
Beth T. Sigall
October 12, 2012