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Autism Speaks: From Not on My Radar to an Integral Part of My Life

June 15, 2011

*Note: I posted this at the other Countering yesterday. The nice thing about posting here a day later is it lets me add a note at the top. I’m not trying to convince others they should have a particular view on AS. I’m explaining how my position has changed over time and why I’m involved with the organization. People can take it or leave it, and I’m fine either way.

 

What does it mean to autism families to have a safe event to take their kids to? A lot. Many of us get along with no special events, no sensory-safe movie showings, no group gatherings. Many of us live in relative isolation, reaching out through the internet to find other families in similar situations.

We had no support group when we first went through Bobby’s diagnosis in Germany in the early 90s. We had no support group in the mid 90s in North Carolina, as we went through subsequent diagnoses and the pinning of other labels onto our son. No school program, either. Bobby spent part of his day with the janitor. Yes, that’s what the school thought was good for our five year old son. But when we returned to Germany in the late 90s, things were changing. We had a little support group of about a half dozen families, a good autism team to help, and a school that was trying to do right for our kids. What a difference that made.

It was hard to lose all that when we moved again, this time to upstate New York and no program, no services. We homeschooled Bobby full-time for the rest of his school career, even after moving back to Texas. It was working well for us. He began to attend a day center when he was fourteen so that he could socialize and participate in Special Olympics, going full-time in the summer and once or twice a week during the school year (and now he attends three days a week in the school year and one day in the summer; a flip-flop that makes perfect sense for us and his increased activities outside the center).

Through all of this, there was no large autism organization, and even after Autism Speaks began in 2005, it wasn’t on my radar. Neither were any of the first organizations that were folded into Autism Speaks. To be honest, we waded through the real world of autism, first with our son, and later with the girls, without any particular knowledge of anything online or organization-wise until I came online in 2008 for a cultural psychology project and started looking at what was available relating to autism. I stayed on long enough and got in deep enough to write my paper, and still, Autism Speaks wasn’t on my radar.

In 2009, I began to blog. The girls had both started school, Bobby had started attending the center full-time, and I was recovering from a surgery: I had time. For the first time in 18 years, I had lots of time on my hands. I didn’t know what to do with it, and so I started looking again at autism and the online community. I started first on Huffington Post (trial by fire), and from there I found blogs like Age of Autism and their opposites in bloggers like JeanetteKathleen, and Autism Nostrum. From there, I found LB/RBOrac, Autism News Beat and scores more. Over the last two years, I’ve connected with over 600 bloggers, which Kathleen and I have listed over at Autism Blogs Directory.

Because of how I came online, though, my first experiences dealt with the vaccine wars and neurodiversity versus biomed parents, and so Autism Speaks came onto my radar from the vantage point of neurodiverse bloggers and unfortunate PSAs like “I am Autism.” I dipped my toe into the forum at Autism Speaks in 2009, but it didn’t seem particularly hospitable, so I didn’t look at it again until a month or so ago.

For most of 2009, Autism Speaks didn’t speak to me. In February 2010, I attended a conference here and the Autism Speaks Walk kick-off luncheon, and the AS speaker provided the unfortunate 80% of marriages end in divorces statistic (which had me emailing the speaker, who took my references and said they’d make sure they updated their information). We didn’t walk that year, in part because my kids weren’t where I felt I could safely do so, and because the tax returns concerned me. All that money on fundraising instead of on families bothered me.

But last summer I was asked to be on the walk committee and I said yes. I also started looking at how other non-profits paid their leadership, their staff, how they spent their money, and I realized that just looking at numbers without context was inadequate.

And then we walked. Rick, Bobby, my father and I volunteered at the walk itself. I headed a team for my college, and I organized student volunteers, and we walked. We watched all those faces. We saw 2500 people come to that walk and have an incredible day. And a lightbulb clicked on. This was technically a fundraising event, and it cost money, money that will show up in the 990. It was also a community event. It was a service to families. It was, to steal from those ridiculous credit card commercials, priceless.

This last Friday, Autism Speaks put on another event in Abilene, “Waltzing with Willie.” A wonderful impersonator came out and performed. Autism Speak’s president Mark Roithmayr and his lovely wife came out to the event, where my dad, my husband, my son, Cisco students, and I were volunteering.

Mark Roithmayr, Bobby, and me

Once again, Autism Speaks provided a safe, friendly environment for families of special needs kids to gather together, enjoy some music, and have a great time. And once again, I was overwhelmed with what a tremendous service that is for people who often don’t get a chance to get out and socialize.

Bobby helping set up.
 Dad listening to “Willie.”
 A sign of the times; changing to meet the needs.
 Families enjoying themselves.
Linedancing!

Autism Speaks is still in its infancy; it’s six years old, but in that time, it has grown and it has evolved. In the 2009 annual report, Mark Roithmayr wrote:

“During the past year we strategically realigned our mission initiatives, reduced operational expenses and improved our overall fiscal health moving into 2010 – no small feat in what were clearly challenging economic times.”

Today, Autism Speaks rolled out a brand new web design. In a chat yesterday, it was revealed that their website has over 2,900 pages to it. Last Saturday, I requested a transition tool kit for Bobby, which will come to me free of charge in hard copy in a couple weeks, but which I could also download free. Families brand new to the diagnosis can get a free 100 day kit.

The number two provider of private research funds for autism in the United States is Autism Speaks. In 2009 alone, nearly 30 million dollars was provided for 220 different projects. In addition to funding research, the organization also provides grants to families and communities. As Autism Speaks realizes needs within the autism community, its focus is changing, too.Their mission now reads: “Our Mission At Autism Speaks, our goal is to change the future for all who struggle with autism spectrum disorders.”

With an organization as large as Autism Speaks, and as receptive to input from the constituents it hopes to serve, working with them to make the world a better place for my children and all people with autism seems obvious.

 Future volunteers.
 Lily cutting the ribbon at the walk.
A goal we share:

 

“our goal is to change the future for all

 

who struggle with autism spectrum disorders.”
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