By Thomas A. McKean
There was a time when I looked forward to April. As co-creator of Autism Awareness Month, there was a time when I was all about the fundraisers and events and conferences and cookouts and get-togethers and whatever else people had planned across the country to promote good, accurate, and effective autism awareness.
But now — like so many of you — I am dreading it and wishing it was over. Because — like so many of you — I know what’s coming. The feel-good stories and slogans that hide too many realities. The attacks on those who share their truths.
And I know there seems to be little to nothing we can do about it.
It makes me feel sad and angry and depressed and …
I know parents will be hurt. I know this is preventable and unnecessary and dark and cruel. I know these parents have done nothing to deserve it. There will be others, small businesses, even police stations that will feel the wrath, all because some activists get that kind of joy from hurting others.
But let me tell you what I personally think this month should be about, and it isn’t about screaming into the ether about words and symbols and colors, or accusing people I know nothing about of being ableist or Nazis.
Currently there is no cure and not many treatments for autism. And though certain people are dead-set against these things, I feel we need some answers. Autism is now affecting 1 in 36 U.S. kids! And we still don’t understand why this is happening. Since we don’t have answers, the best we can do at the moment is education and awareness. This is what I feel the month should be about.
Awareness of and advocacy for the realities of autism. We don’t need propaganda. We can educate without being preachy. We can advocate, telling our truths, while being kind to one another. Indeed, kindness is at the very foundation of advocacy. Without kindness, no one will listen and the advocacy will be ineffective.
But we cannot make people listen. We cannot force people to hear. I know we want to, but we can’t. They’ll hear us or they won’t. If they won’t, we move on to someone who will.
Events will draw people. They will make people interested in listening. Find a receptive frame of mind. This is why we picked April for Awareness Month. We chose April because it started with A (as in Autism) and it was in the Spring, a good time for conferences, fundraisers, and events.
Another thing we can do is approach legislators. There is limited funding to go around and the squeaky wheel will get it. Write or call or email them, ask for a meeting to share your story and your child’s needs. They will think we aren’t interested if we don’t and others do.
Advocacy is not about bullying or making demands or calling people names. It’s about creating change for the better. Real, tangible change. Not wishful thinking. It’s about working with others (not against them) to get things done that will improve the quality of life of those we care about. We can do these things.
And this month, when you see someone speaking darkness on social media, take a deep breath, hug your child, and move on.
Thomas McKean was diagnosed with autism in 1979 at the age of 14. As one of the original autism self-advocates, he has served on the board of Autism Society of America, has written two books on autism, has spoken at numerous conferences, has done private consulting for families and schools, and has appeared on Oprah and NPR. He currently lives in Ohio with his sister, her husband, and their pomeranian. Learn more about Thomas at www.thomasamckean.com.
Disclaimer: Blogposts on the NCSA blog represent the opinions of the individual authors and not necessarily the views or positions of the NCSA or its board of directors.