Monday, April 2, 2012

Changing awareness to acceptance

April being "Autism Awareness Month", I know I need a post at the beginning of the month, but I really don't have much affinity for the awareness mantra. I guess awareness is a step, but it seems like such a minimal goal. And what does it mean? That you've heard the word autism? That you listen to stats about diagnosis rates going up? That you have some vague feeling about some sort of cause or cure needing definition? That you know someone with autism and you're willing to pitch in by buying a blue light bulb and turning it on? None of these activities mean much to me or to msk, so connection's a little rough.

I'll take passion and joy over "normal" any day
 Two years ago, I posted about moving beyond beyond awareness to understanding. This year there is a relatively big push to change from "Awareness" to "Acceptance". You should read this excellent post by Steve Silberman here that ties together, from many sources, how to make the world a more accepting place for autistic people.

So, following along with the theme of that post, here are my top five ways that people who are interacting with msk could change to make msk's life better - more respectful, more tolerable, more understanding.
  1. Presume competence - If you have a hard time knowing how much msk can understand or do just by looking or listening to him, give him a chance to exhibit his skills (in his own way and time). And while you're at it, try not to talk about him like he's not there - honestly, it doesn't seem to bother him, but it depresses the hell out of me.
  2. Look at reactions to gauge what can be tolerated - With limited expressive language, especially in new and different situations, msk is not going to ask you to slow down or stop talking. Distress is evident if you look for it.
  3. Don't expect quick comprehension of social queues - This is the flip side of #2. Msk has a hard enough time trying to process verbal inputs. If you want to give feedback, state it explicitly, rather than hoping he'll pick up on that disapproving frown.
  4. Use simple language, slowly, and wait for responses - Words are tough for msk to process. Extra time and plain talk will give him the most chance at success.
  5. Work to include - Once you strip away the expectations you can see what msk has to offer as a positive contribution to a school or a social group or a family. If you really believe in diversity you will spend the extra effort to pull him in. 
And while I'm at it, there are some ways society as a whole could evolve to make life better for autistic people generally.
  1. Don't pity - It's a mindset change, but there are different ways to be than "normal". Msk is not depressed about himself, so don't feel bad for him. I'm pretty good with my life, so I could do without the "Oh this must be so hard for you." type comments. If you barely understand what's involved in msk's specific brand of autism, there's no way you know how you would feel if you were him or you were me. Curiosity and questions and seeking to understand are great, but pity is a roadblock to respect.
  2. Realize that autism is not just about kids - As much as we've worked to figure out how to make schools work, there's a whole lifetime ahead of autistic youths. There are plenty of autistic adults. Don't marginalize them because they are grown and are trying to figure out a place in society. Respect and inclusion, and the work required to achieve them, don't end at 18 or 21 or 45.
  3. Welcome differences - Encouragement should be based on development and growth, not an image of "normal".
  4. Listen - It might be non-verbal, but if you pay attention to all communication you can enable self-determination. All people want to have a say in their future. Goals and priorities for a self-determined person are likely to be different than what you presume when you don't listen.
  5. Actively accept differences - I posted a while ago about someone calling the police when msk was feeling frustrated and communicating it. This attitude of shaming or confronting people who are acting outside of your idea of normal, with no intention of seeking to understand first, is not going to change anything beyond making a lot of people feel miserable. When you see something different, seek to understand, and to whatever level is appropriate for the situation, accept and acknowledge those differences. We might be talking about a smile and a nod rather than a lecture - it's hard to over-state how much this can mean.

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