I was going to avoid writing about Autism Awareness/Acceptance Month and World Autism Awareness Day altogether. I didn’t think I had anything worthwhile to add to the discourse, a lot of which disappoints me.
I understand some of the divide in the autism community. When you have a disorder under a single umbrella that covers people who are non-verbal, self-injurious and will require lifetime managed support AND those who are quirky, socially awkward, and have trouble fitting in, you’re bound to have some differing opinions on where the emphasis should be.
But I am troubled by the divide, because I think we all want the same thing: A world that is aware of, understands, and accepts those on the spectrum. A world that has the proper resources to support those individuals so that they may participate in society as fully as possible. A world that unlocks the full potential of those individuals rather than pushing them into isolation and dead ends.
I don’t have the answers. I don’t pretend to know the right approach. I do know that we have a long way to go towards simply understanding all the varied people on the spectrum. I know some believe “awareness” is no longer a worthwhile goal, but I disagree. Many people who have not had autism directly touch their lives have very little understanding of it or what it means.
I also know this: My own views on autism have changed tremendously since my son Ryan was diagnosed with PDD/NOS in 2002. They continue to evolve and change every single day. In the simplest terms, I no longer seek to “fix” my child as I did back then. I want to support him so that his full potential may be unlocked. I do not wish to view my child as broken and in need of repair.
I have come to find some positives in our autism journey. I think it has made me a better parent and a more compassionate person. I have learned to treasure small moments and little victories in a way that I might not have if not for autism touching our lives. And I have become connected to an incredible community of parents and advocates. But I have to be honest and admit there are parts I hate as well. The meltdowns. The endless battles over the smallest changes in schedule. The confusion and uncertainty over medications. The constant worry.
We have lived with an autism spectrum diagnosis for more than 10 years, and yet there are things we still don’t fully understand about our son or how his brain works. Of course more research and understanding is still needed.
All of this came in to sharp relief for me Tuesday night. April 2 was, of course, World Autism Awareness Day. I was invited to attend a reception for Autism Speaks to mark the day. Had Veronica and the kids been home, I probably would have skipped it. But they were out of town, so I decided to attend on my way home from work.
I’m glad I did. It was and incredibly rewarding evening. I spoke to people involved in the research, fund-raising, and administrative arms of Autism Speaks. I talked freely of my evolving views, of the controversies the organization has faced and the growing pains it has endured. I found them willing to listen to my thoughts and very frank in their own assessments of Autism Speaks’ path. I also spoke to individuals on the spectrum. I had a conversation with John Elder Robison, whose books have taught me quite a bit about my own child. I was amazed at the questions he asked about Ryan’s mind and the way it works. I excitedly fired off a text to Veronica saying how even though Mr. Robison had never met Ryan, he already understood him better than most people.
That too-brief interaction with Mr. Robison reinforced for me the need to build connections within the autism community. Veronica and I have realized as we have watched Ryan struggle to form social bonds with neurotypical peers that he might do much better if we could find for him a way to connect with other people more like him — who understand how he thinks.
There were two other moments I will take away from the evening. The reception’s entertainment was provided by Ethan Walmark, a (very) young man with autism who was received quite a bit of well-deserved attention for his musical ability. Here, take a look:
As I stood, rapt, watching young Ethan belt out not only classics like Billy Joel’s Piano Man, but also more obscure songs like Eminence Front by The Who, I noticed his father standing nearby. I leaned over to him and said, “you must be very proud.”
He nodded in acknowledgement and then said simply, “thank you,” in a way that I could tell meant my remark had touched him. I didn’t mean “you must be proud that your son with autism can perform in front of these people.” I meant “you must be proud that your son is awesomely talented and incredible!” and I think he took it that way. It was yet another moment that reinforced for me the need to build connections within this community. Though there is no one autism, there really should be one autism community for nobody outside of it can truly understand it the way those of us who have walked any portion of this path can.
As I was leaving the reception, feeling uplifted about the way the evening had gone, I received a phone call from Veronica. Ryan had worked himself into a state of panic over the bulging shots-on-goal total in the Boston-Ottawa game. He got on the phone, sounding terrified. I tried to talk him down, but it was no use. Veronica and I both knew that evening would bring no sleep, as anxiety had taken that chance away.
It was such a helpless feeling — being far from them, unable to help. It was also deflating, and brought me down from the high I had been feeling.
But it was poignant too. I have no idea why something seemingly innocuous as the shots-on-goal total in a hockey game, or white vans or any numerous things in between, has the ability to paralyze my son with fear.
Perhaps someone who was in that room can one day help unlock that understanding. Perhaps a connection can be forged with an individual on the spectrum such as Mr. Robison that can help us understand our son in these moments and learn how to better support him.
I don’t want to focus on politics that creates divides within the autism community. I want to focus on the connections that bring us together. If wearing a puzzle piece can help forge those connections, then I will wear a puzzle piece. If celebrating “awareness” can do so, then, by all means, let’s celebrate “awareness.”
Much like our President has said about the paralysis congress, what unites us is greater than what divides us. Let us celebrate that.