Autism, family, health, Mental Health, Parenting

How to Really Understand Autism

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Here are some of the worst things you can say to a person on the autism spectrum:

  • “Just hurry up already.”
  • “Why can’t you just…?”
  • “What are you doing that for?”
  • Ask them 4 or 5 questions in rapid succession.
  • Not let them finish their sentence.
  • Don’t accept their explanation as valid.
  • Try to say something again that didn’t make sense to them the first time.
  • And do it too loudly. We are not deaf; we in fact have very sensitive hearing.

This is for parents of spectrum kids, anyone living or working with ASD-ers, and for you, too, the autistic.

Learning how to understand the spectrum is a process. Learning how to explain what comes naturally to you when you are on the spectrum, to those who aren’t, is also a process. After many years of trial and error, I believe that it is definitely a two-way street. And unfortunately, there seems to be a lot less listening going on in the NT (neurotypical) camp.

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If you are ASD, here’s my advice in building communication with “the other side”:

  • Try to stay calm. Even if you’re in a situation of heightened stimulation, and you’re feeling a little wiggy.
  • Try not to let it get to you if people call you names. (I know this will be hard. And I’m not patronizing; I’ve faced this problem every year of my life.)
  • Develop and practice coherent and simple sentences or short discussions that accurately reflect what you’re feeling or experiencing. For example: “When you raise your voice, my heart beats too fast.” Or, “I don’t know what you mean by ‘use the screwdriver to secure the loose bolt.’ I need you to show me how to use the tool and tell me what you’re doing at every step.”
  • Deep breathing or meditation techniques to hopefully keep your head (when your body’s about to lose it) can be helpful.

If you’re the NT in the situation, here’s my advice:

  • Listen to what your family member/friend/colleague is saying, and don’t judge them — accept it and take it seriously. We have major fears about opening up to others, because most “average” humans don’t relate to what we’re going through, and if you’re condescending or telling us to “get over it” or that it “can’t be that big an issue,” then you are not building the bridge, you are widening the chasm.
  • Don’t try to offer a long-term solution in the heat of the moment. If your ASD child is having a meltdown, this is not the time to come up with a plan to stop tantrums from ever happening again. Wait until an hour, a day, or even a week later, to discuss what triggered that reaction and how to possibly reduce such reactions in the future.
  • Put yourself in their shoes. Atticus Finch famously said, “You never really know another person until you get inside their skin and walk around a bit.” This is especially true for those of us with autism. Don’t look at your loved one like they’re just a set of medical textbook symptoms. Think of it like this: You’re from the planet Neptune, but your spaceship crash lands on Pluto, and the way the people do things are just so different than what you’re familiar with. It’s not that either the Neptunians or the Plutons are wrong — it’s just different, and a lot for you to figure out and get used to.
  • Remember that we want to build the bridge just as much as you do. We’re already lonely and struggling, because we seem to be on an alien planet; having others label and taunt and ridicule us won’t make us feel any better, nor change our “habits” or “quirks.”

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And for everyone — don’t give up after a few weeks or months. It’s a process. That means ongoing, and possibly long. Have patience (or grow it, if you don’t already possess it). Have tolerance (that means for the other person’s perspective, not what you assume they think or feel).

And have heart.

Please.

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3 thoughts on “How to Really Understand Autism”

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