Thursday, 03 December 2009

• Back to Basics: My Autism Lists

  Today’s post is for parents of children with autism. I’ll start by saying that I do not have a child with autism, so I can’t relate to the full scope of your situation. However, most of my kid-related autism jobs involve working closely with families, and I’ve spent significant time with about 50 families. What does ‘significant time’ mean? That means I’m that overly-chipper girl that shows up in the kitchen when you’re still groggy in the morning to help make a ‘morning routine’ schedule. It means I’m the girl who knows the details of the potty struggles. I have had to frantically search the yard with a flashlight to find Thomas the Train, and I cringe when strangers act like autism meltdowns=bad parenting. I know that most parents of a child with autism are sleep deprived, financially concerned, and in hot pursuit of reliable information.

  I’m saying all this because I generally think that advice from people who don’t know what you’re going through is condescending, and relatively useless…and there is no getting around it: what I’m about to say can only be categorized as unsolicited advice.  

  The only thing I can say in my defense is that I made these lists for myself, for when I forget the important stuff about teaching a kid (with or without autism) to be a grown up.

  Enough disclaiming. Here it is. Two short, sweet, lists that bring me back to basics:

  Do:

  1. Address anxiety directly. I don’t always know what makes other people anxious, but I can make some good guesses: transitions, new stuff, and confusing expectations. What should I do for myself when I’m anxious about unavoidable stuff? I should prepare for it, usually in a visual format (think planner, journal, diary or sketchbook). I can prepare kids for this stuff too. When I start dropping the ball on setting clear expectations, complete with transition warnings, everything falls apart.

  2. Remember sensory sensitivity. Again, I don’t always know what icks people out, but I can make some good guesses: too much light or noise, crowds, itchy clothes, and too much to look at. I can adjust my own perspective, based on the environment, and I should.

  Don’t:

  1. Nitpick. Figure out the one, or occasionally two, most important things for the next three hours, and hush up about everything else. It’s tempting to over-correct, or to feel embarrassed about someone else’s manners and critique them, but 100% of Empower Autism authors agree, it’s a bad idea to nitpick. In the long run, the child will suffer from insecurity, and I will suffer from frazzled nitpicker syndrome (a condition immediately obvious to those around me).

  2. Talk too much. For Pete’s sake, I’ve been doing this for years! Why can’t I just remember to give a short verbal explanation, and back it up with visuals? Instead I sometimes find myself blathering on as if I was making sense.

  On the occasions that I can keep all of these things in mind, I have more fun, and so does everyone around me. As simple as they sound, these four things are definitely not easy. However, I believe that each one is a concrete way to be respectful of autism.

  
  

  • 12:00 PM
  • 483 Views
  • 4 eProps
  • 3 Comments