I did not wear a blue puzzle piece this morning. Veronica and I chose to move on from supporting Autism Speaks last fall. Our choice was a personal one. Others feel differently and I respect that choice. As much as we want tolerance and acceptance for our children and loved ones on the spectrum, so too must we have respect for those whose opinions differ from our own.
Our choice was specific to Autism Speaks, and based on language it uses in its rhetoric that we find harmful. Our choice does not mean I no longer feel autism awareness is a worthy goal.
Awareness, acceptance, education, recognition, support. They ALL remain worthy goals. They remain personal goals as well. I am still learning and evolving my position on autism and my understanding of it. I’m sure my views in one or two or 10 years will be different then they are today.
But today is where we find ourselves. And today, on World Autism Awareness Day 2014, this is what I believe.
My son is not broken. He does not have a disease. Autism is not what he has, but it is a part of who he is. He may be part of a statistic, but he is not a statistic. He is wired differently from most. His unique wiring can make it difficult for him to navigate a world that is ordered for the majority of people who are not wired like him.
But just as autism creates challenges, it also has created strengths. His preference for order and routine means procrastination is not an option. His work and study ethic is outstanding, and, with the proper support, it has helped him achieve academic success.
His singularity of focus has created a passionate interest we can all share: hockey. That shared interest creates opportunities for family togetherness. It has led to extraordinary experiences and memories. It created in him a desire to take part in team sports, where he sees, first-hand, how practice and repetition leads to improvement. He has shown the ability to translate what he learns about the game from watching it into how he plays it on the ice.
Ryan is learning to understand his challenges. He is learning to self-advocate. And though that process can be painful, it is an amazing — and important — step towards being able to enjoy the most fulfilling life possible.
It has been more than 10 years since a day went by without me thinking about the word “autism.” In that time, those thoughts have changed. In the early years, the overwhelming emotions were fear and sadness. Those were gradually joined by determination and acceptance. It did not happen overnight, and it continues to evolve. I still have fears, mostly when I think of a future beyond high school and the carefully constructed support network that Ryan enjoys today. I still have sadness, mostly when anxiety strikes and turns Ryan’s favorite things into the enemy.
But those emotions are more fleeting now. I have other emotions, too: Wonder. Wonder at discovering something Ryan knows or has done that I didn’t know he was capable of. Veronica recently showed me an email exchange he had with a teacher in which he provided a comprehension assessment of a reading assignment. We were blown away. That he signed the email “your favorite student,” made us both smile.
I am appreciative. Appreciative of the support Ryan receives, of the teachers and educators who are invested in his future. I am appreciative of small victories. I savor “regular” moments that are anything but regular for us. I have re-ordered my priorities. The things that bring me happiness are increasingly those without a price tag: memories, moments, experiences.
I am connected. Connected to an amazing online community of parents, self-advocates, and others in the autism community. Their shared perspectives have helped me shape mine, and encouraged me to do the same.
I am focused. Focused on the present, while trying not to dwell too much on the past or fret too much about the future. My changing perspective on autism means there are things in my parenting past I would love to go back and change. I’ve had moments as a parent that I’m not proud of, but I’m learning, and figuring it out, and trying to be better. And I suspect I could say that last sentence and have it be just as truthful even if I’d never heard of autism.
I am uncertain. I — we — question ourselves. We change course. We try one approach, then drop it and try something different if it doesn’t work.
Our autism is just one autism. Our journey is just one journey. As in all things, your mileage may vary. I know only of how it feels to walk in our shoes, and I know that the experience of others is very different. I know that we need to strive for a world where more people understand what autism means, that it is a spectrum, that it can mean very different things for different people. We need to strive for a world that recognizes, tolerates, welcomes and appreciates difference. But we also need tangible things: research, support, services, job training, modified college environments, adult housing. These things are expensive and require money and money is always where it gets messy. It’s why our decision about Autism Speaks was not an easy one, for it is an organization with the power and influence to find that money and direct it toward worthy goals.
This is long, and it’s rambling, and probably doesn’t make a ton of sense. So let me try to wrap it up with something a little more concrete.
I am reminded. Reminded of one of the first thoughts I had when we learned Ryan’s diagnosis. I’m not ashamed to say I thought almost immediately if we would ever watch a game together. On his first full day of life, I held him for three hours and watched a Michigan football game. Two years later, I wondered if there would ever be another one.
Not only have we crossed that threshold, many times in fact, it’s a more enjoyable experience than I ever could have imagined. My son doesn’t just watch a game. He experiences it, allows it to envelop him. He observes the crowd, does what it does. He seeks social contact with strangers around him because he knows they have this shared interest. He pays attention to tiny details. He’s keenly aware of game situations and able to jog his computer of a brain to instantly recall a time he’s seen something similar. He gets emotionally invested in the outcome, yet is quickly able to detach and move on when the game ends. When we go to games together, I watch him as much as I watch the game. I am keenly aware that he is experiencing it in a very different way than I am, and often I feel like I’m the one that’s missing out on something.
It is World Autism Awareness Day 2014, and this is what I believe.