Awareness, acceptance and fundraising for #autism

There was a blip of excitement last week when Willie Geist and Uzo Aduba were challenged during a fundraiser for autism. Meredith Viera then repeated the gimmick on her show with Geist and tagged Matt Lauer and Kathie Lee Gifford to go next. It didn't take long to see the string of articles asking if (or prematurely predicting that) the #TwizzlerChallenge was going to be the new #ALSIceBucketChallenge.

One would assume that this would be the tipping point of what many are calling "the new ice bucket challenge". But I have my doubts. For one, it's just not a challenge that will easily catch on given the slightly more intimate nature compared to the ice bucket challenge. There's also the little catch of having a big brand name attached, which some people are going to balk at because there may be suspicion that it's a marketing ploy. Not to mention that many autistics who avoid gluten won't eat Twizzlers. (The challenge is distinctly flawed when the people supposedly benefiting cannot participate.)

As a parent of an autistic child, I don't see the #TwizzlerChallenge as a tool for awareness. There's already a lot of awareness about autism, which includes many misconceptions as well. So, when I read this post by Amethyst Schaber, it really resonated with me, even though it isn't specifically about the #TwizzlerChallenge. This quote nails it for me:

What these non-autistic led awareness campaigns tend to impart to the average non-autistic person is that autism is as a vague, scary childhood “disease” (that alone is misinformation enough to harm the autistic community) that is rapidly becoming an “epidemic” and for which parents are desperately seeking a cure. They learn that having an autistic child is very hard on parents, and that autistic people lead sad lives with little to no value, and that any disability or difference is something that needs to be totally eradicated through the application of medicine.

I feel that autism acceptance— the respect, the equal rights and opportunities, and the societal inclusion of autistic people— is a goal that would actually change society for the better and help to make better lives for autistic people and our families.
— Amethyst Schaber

Here's the thing I struggle with:

Because I live day-to-day with the unique challenges of my autistic son, this "awareness" campaign doesn't speak to me. It's a gimmick that may raise funds, or generate viral videos of people doing silly things. But in no way does it tell the world what it's like to be autistic or educate people on how to work with and relate to people who are autistic. That, to me, is true awareness.

And true awareness leads to real acceptance.

He was so excited to go to school dressed up in his green shirt. :)

He was so excited to go to school dressed up in his green shirt. :)

Funds are great. (Trust me, if you want to eat Twizzlers with someone and write a cheque to your favourite local - please support the local charities - autism charity, by all means don't let my views stop you from doing so. We/they need the support.) My dear friend, Suzanne Jacobson, is doing phenomenal work in Ottawa with QuickStart Autism. If she starts seeing an uptick in donations, it means that families with children who are very young can get into the KickStart program so they're identified as early as possible. Early identification allows children to receive interventions at the age when it is most critical for overall development. How amazing is that? Don't you want to donate now?

In less time than it would take me to do the #TwizzlerChallenge or #LightItUpBlue, I've helped every person who reads this post learn about a great cause that can truly help children and their families. I could write another post about all the amazing progress my son has made since his diagnosis because he started therapy right away. I can tell you how our lives have changed. I can tell you how much easier it is for my son to cope with things that used to overwhelm him. But I'll save that for another day. 

For now, I'll just say that if you want to have the kind of awareness that leads to acceptance, have an open, honest conversation with someone who is autistic or the people who live, work, and play with them every day. Get to know them. 

Only then will you experience true awareness.