Friday, April 2, 2010

Moving beyond awareness

April is Autism Awareness month and today, April 2nd is World Autism Awareness Day. Raising awareness is all well and good, but isn't time to set our goals a little higher?

At this point isn't everyone aware of autism? Awareness is such a vague word, with such a low criteria. If you've watched Rainman or Mercury Rising aren't you aware of autism? If you've heard something, but haven't followed court cases and you think that vaccines cause autism I guess you are aware of autism. I can't speak for more than the people I come in contact with, but I think amongst them, autism awareness is a done deal.

That's not to say outreach and communication isn't required - it's just that we need to move forward. Here's my list of goals in order of difficulty.

Beyond rumors and feelings about autism, we need some real understanding and education. Some high points for me are:
  • Basic facts need to be spread - typical traits that help others distinguish autism from "spoiled" kids would prevent many hurt feelings. Witness the whole SmockityFrocks debacle.
  • The diversity of autism needs to be communicated - if you base your understanding of autism on a single individual you need to know that autistics can be all over the map: Verbal, non-verbal or limited speech; Frustrated or joyful; Social or reclusive. You get the point.
  • When we talk about autism we need to make it clear that it is not a death sentence - Autistics can live long rich lives. They may need support through that lifetime, but that doesn't mean they or their parents need to be pitied.
Along with the understanding and knowledge, how about instilling some empathy? Autistics and their caretakers may seem different than you, but they have feelings. Put yourself in their shoes for a few minutes. Try to understand a sensory overload meltdown or frustration with being unable to communicate effectively. How would you feel if you were forced into isolation because you didn't seem normal enough?

Once you see the humanity of people with autism it should be clear that they, like lots of "different" people will enrich society if we can make a place for them. Neurotypical kids grow through interactions with autistic kids. Strengths, for example msk's mind-blowing artwork, need to be celebrated. Providing accessibility to people with sensory sensitivities is as important as ramps for people in wheelchairs.

Civil Rights
This is the pinnacle in my mind and a point that we must reach sooner rather than later. msk needs to be seen as a member of society with all the rights that entails. Discrimination and exclusion are not just morally wrong; we need them to be recognized as illegal. The law needs to have teeth and be taken seriously. There are too many stories of pain, suffering and even death. We need to be understanding of other viewpoints, but my kid can't afford complacency in the face of injustice.

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