Thursday, April 04, 2013

The thing of it is, most of the people who have those awful puzzle ribbons probably have the best intentions. They think they're doing something nice for people on the autism spectrum. They think most people with autism are kids (I guess that the perception is that we never grow up into adults?). They mean well, so they buy a sticker or a magnet or a T shirt.

But that isn't what we need.

What we do need is so much more involved that I can understand the urge to go for the hideous ribbon logos.

  • We need for you to actually learn about us, from our perspective. This isn't selfish. We spend years in therapy learning to adapt to your world and to try to see things your way even when it makes no sense to us at all. We have to make major changes and pretend to be what we're not. Reading a few Temple Grandin books, watching the movie, isn't going to kill you or warp your mind.
  • Quit forcing us to stare at your eyes and stop baring your teeth at us unless it's a genuine, from the heart smile. Bulging eyes and a red clown-like mouthful of teeth and a phony smile are pretty frightening, frankly. If we are comfortable with making eye contact with you or can cope with giving it a try, we will...but for most of us, we are better able to listen to you and focus on what you're saying if we don't have to deal with the discomfort (sometimes extreme) of full frontal eye contact for prolonged periods of time.
  • Don't touch us without asking. Please. Please. Please. Also please be aware that many girls and women on the spectrum have been molested/raped because we had trouble reading social signs that would have signaled danger...and so unwanted/forced physical touch may be a trigger.
  • Understand that a meltdown is not the same thing as a tantrum, it isn't drama or manipulation and it definitely isn't something that can be turned on or off like a light switch. Meltdowns are scary and awful, which is why we are reacting so badly..... If you were experiencing it, you would be freaking out, too. Just be glad you don't have meltdowns and if appropriate, get us to a safe, quiet place in a non-punitive way until the meltdown is over.
  • When you see parents with autistic kids, don't say "I'm sorry" and act like the kid has a terminal illness! Would you gush sympathy like that if the kid had Down's Syndrome? Probably not. Probably you'd focus on the positive traits of Down's. Also, even if that kid is stimming like mad and not making eye contact, they can hear/understand that you are acting/talking as if he/she is a terrible curse on his/her parents. That does nothing good for our self esteem. Stop it. Also, may I point out here that an awful lot of these kids have a parent who is also on the spectrum, albeit high functioning and able to "pass" as normal? It hurts even more to be that parent and have people react that way! Autism isn't a death sentence!
  • Also, assuming that savant skills are present is just as unhelpful. We aren't all math genuises with freaky skills. Just accept us for whatever it is that we are, and know that every one of us is unique, just like you ostensibly normal people are all unique.
  • Don't judge parents of autistic kids. They're often sleep deprived and stressed out already. Their kids are even more stressed out. The kid doesn't just need to be hit/spanked more often in order to avoid meltdowns and if you think that's the solution then you're part of the problem, so just walk away.
  • Wear less/no perfume. No Axe. Some of us have sensory issues such that we're hypersensitive to smells and can get a migraine or feel like throwing up when you douse yourself with perfume. I can tolerate mild scents, and enjoy some of them. Subtle is always better anyway!
  • We aren't generally deaf. Talking loudly as if we are isn't helpful, especially if you're also staring us down. If it seems that an auditory processing problem is occurring, you can talk slowly and calmly and pause, also ask a question for feedback to make sure we understood what was said. Please don't get mad if we ask you to repeat yourself. We were trying to listen, but our brain sometimes needs extra processing time. This has nothing to do with intelligence, by the way, so you don't need to talk to us as though we're 5. Just slow down and be patient. The more extraneous stuff/sensory input there is, the more patience we will need.
  • Following high-input situations, environments, or activities, we will need down time, to zone out and recover. This is true even when we were really enjoying the exciting activity or place we were in. Refusing to allow down time will result in meltdowns and meltdowns are awful experiences that require even more down time.
  • If it isn't hurting anything, let us stim. Stimming is a coping mechanism for us. You people do weird stuff all the time; our weird stuff isn't any weirder, it is just different, and it is functional (coping).
  • Please be gentle, kind and patient with us. If you don't understand, that's OK. Just give us our space and keep an open mind and heart. We aren't cold and heartless people and we can be hurt more easily than you might think.
  • Boundaries need to be very clear, as we cannot intuit them with magical social skills. If we are doing something that is not OK, say so right away. Please try to keep boundaries rational, reasonable and respectful.

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