This is a blog post by Marianne Sullivan, RN, MN, the Assistant Director of National Outreach and Resources at Autism Speaks, and the mother of an adult with autism.
Early in the morning on Saturday, May 19th, my son Hunter and I joined hundreds of other families affected by autism for the "10th Annual Bay Area Walk Now for Autism Speaks."
Going to a busy public event is not something my son liked as a child or enjoys now as a young adult. It has always required preparation and some fine tuning during the event. Saturday was no different. Hunter approached the day a bit grumpy, as he would have preferred other activities to fill the day. However, we negotiated and he then participated as best he could in a crowded park with people he didn't know. On some level, I feel certain that he came to an understanding of why we all were there.
After arriving, we were escorted to the registration table by young volunteers who were friendly and very welcoming. I explained the registration process to Hunter, emphasizing that others had donated because he was doing the walk. I added that we could also make a donation. He took out a $20 bill from his wallet and put it on the table and said, “Here, take this.” The volunteer explained to him how to fill out the donation envelope and thanked him. He had a look of accomplishment and pride that I will remember for quite some time. It was one of those positive moments of community inclusion, which of course is a goal EVERYONE HAS.
Mingling with the other walkers, we were reminded of the energy and patience it sometimes takes to gather up young children, to align the strollers, and to carry the lunch-filled ice chests in a coordinated fashion. Somehow it does happen and you can feel the excitement grow as families introduce themselves to others and begin to exchange stories.
We pass through the Resource Fair area where families have an opportunity to chat with service providers in their community. There is an incredible atmosphere where families don’t have to worry about their child (with or without autism) having a meltdown, or grabbing handfuls of lollypops from a resource fair table. The Walk becomes a safe place to let down your guard, to rely on your community and to feel connected. As we passed over the Walk’s finish line, we congratulated each other for the funds we raised to further the mission of Autism Speaks.
The first Bay Area Walk took place 10 years ago, but I remember it as though it was yesterday. It was held at San Francisco's Keizer Stadium and it was sponsored by the Cure Autism Now Foundation (CAN). Eventually CAN and several other autism organizations merged with Autism Speaks, convinced “one voice” could better serve the autism community. At that time, my son Hunter was 10 years old. Today, he is a 20-year-old adult with autism.
Looking around in the huge crowd at this year’s Walk, I noticed there weren't many other adults Hunter’s age or older. Remembering all the parents I have met when Hunter was a child, I can't help but wonder where they are now and how their adult children are doing. Families of adults have fewer opportunities to share, inspire and help each other. Sadly, some adults with autism and their families live in isolation. This year's Walk reminded me that we need to see and hear from all those adults whose lives continue to be challenged by autism. One hope I have for a future Walk is to see the adults with autism and their families by my side!
Meanwhile, I am pleased to share resources Autism Speaks and Family Services have committed to with the aim of addressing the needs of adults with autism. To learn more please visit: Advancing Futures for Adults with Autism, Autism in the Workplace, Housing and Residential Support Tool Kit, and our online Resource Guide to search for adult services.