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Autism Awareness Month: Before You Light It Up Blue

It’s almost April, and you know what that means. “Autism” is the word of the day. Speaking of words, many of us were told:

“Sticks and stones may break my bones, but words can never hurt me.”

I think we all know that’s not true. Words can hurt a lot, even words that aren’t meant to be hurtful. So I want to talk about words.

If you are planning to raise awareness about autism this April, please remember: children and adults diagnosed with autism will be listening to your speeches and reading your blog posts and articles. This means your kids. If not your kids, someone else’s. And they often hear or read words like “tragedy,” “crisis,” “burden,” “expensive,” and “stressful” when describing their lives.

These words can hurt feelings and damage self-esteem. They can make children feel guilty and miserable, because something about them– autism– causes so much trouble and unhappiness. They might even wonder if their families would be happier without them. And no child should ever have to wonder that.

I’d like to suggest some other words to use.

  • No one wants to be part of an “epidemic” or “public health crisis.” Instead, say “many more people are now being diagnosed with autism.” Also, please don’t compare autism to life-threatening illnesses like cancer. It isn’t fair to either autism or cancer.
  • Many people argue about whether to say someone is “autistic” or a “person with autism.” Read arguments for both sides (the formal terms are “identity-first language” and “person-first language”), especially ones written by people with an autism diagnosis. If you are speaking about a particular person, ask them which term they prefer. Saying that someone is “on the autism spectrum” is usually a good compromise. Please don’t say that someone “suffers from” autism– it’s just too depressing!
  • Instead of saying that autism is costly, stressful, and a burden on families/society, talk about how to make things better! Say things like “autistic people and their families need our support and understanding,” “people on the autism spectrum deserve access to more services and opportunities” and “we can all contribute to a better future for children diagnosed with autism.” Remind the public that proper education and work accommodations pay for themselves because they allow people with disabilities to live more independent and productive lives. Most importantly, remember that finding happiness and meaning in life are possible for all human beings, no matter how severely impaired.
  • Suggest ways to help in your community. Encourage local businesses and organizations to plan autism-friendly events. Remind people to be patient and sympathetic when they see someone having a meltdown. Promote jobs for people with disabilities. Give money or technology to special education classrooms. Donate a book by an autistic author to your local library. Sponsor a disability-rights lawyer or expert on disability services to speak at a public event. Fund a field trip or summer camp for kids on the spectrum.
  • Share positive stories. Every life has success stories and wonderful moments. We see great strides forward in the world of autism every day. Young people like Carly Fleischmann, Ido Kedar, Dillan Barmache, and Jordyn Zimmerman are changing our understanding of autism, showing us how much is truly possible even for those who are profoundly disabled.

Create hope, not despair. Spread love, not fear. Move beyond “awareness” and aim for acceptance and inclusion. Our children are worth it.

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  1. Restless Hands
    March 27, 2016 at 10:00 pm

    General note: Sorry for the weird accidental edit where some of the text disappeared when I tried to fix the formatting. All better now.

    Note to the Autistic Self-Advocacy community: I know that these suggestions in many ways fall short of what you would like to see. But my intended audience here is not familiar with the work you have already done, and those who are can read more thorough critiques elsewhere. This is meant to be accessible to a wider community, for which I need to use ideas and language that already permeate public discourse. Small steps.

    Like

  1. March 27, 2016 at 5:40 am

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