Back to Basics: My Autism Lists

Today’s post is for parents of children with autism, people who work with kids in the autism field, and anyone else who has to walk a fine line between pushing boundaries to teach skills, and making room for people to be just be who they are.

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.

3. Sit back and appreciate the true character of the kid under your care. This one is so important to me, that I wrote a whole post just on this topic.

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.

What are your Autism ‘do’s and don’ts’?

2 Comments

  1. sandy November 16, 2009 2:16 pm  Reply

    You hit it right on the nose on your do’s and don’ts, I have a son who is 21 and has autism he’s in the lower functioning, you have to be very careful how you approach him, you can’t get in his face or he backs away and gets anxious, have to explain everything your doing for the day to him because if you do or go somewhere he doesn’t know he’s all mixed up. Has to know ahead of time like if your going for a walk with him I tell him like and “after lunch we will go for a walk”.
    You can’t tell him oh Brandon we are going to a movie on Friday and its only Monday, he will ask every hour or 2 about going to the movie right up to the Friday, he has no concept of days or dates or time. We tell him day of or night before.

    I like the one about nitpick I have done this with my son on things that don’t really matter they don’t bother him but it bothers me, whatever may be the case. I have let things go now or I stress myself out and him.
    The one thing I can’t let go is he swears and he uses the worst of the worst in language and knows how to pronounce these words perfectly, its usually when he doesn’t get his own way, he loves shopping and if I say were not going today Brandon he says@@#$%$#@!!!
    or its time to leave something he’s having fun at its F@#$#u and I almost die of embarassment so we don’t go out as much as we use to. You see I had to put him in a foster type home because of the swearing it got so bad and he doesn’t do it there, and he doesn’t swear at day program he goes everyday except weekends he does know if he swears there they won’t have him there. Are family have him home a weekend a month and holidays. Well I think I have rambled on enough here but everthing you said your doing right, Sandy

  2. Empower Autism November 16, 2009 7:40 pm  Reply

    Sandy, thank you for your comment, and for sharing about Brandon. It is not easy to pick which battles to fight with anybody, is it? Keep your chin up!

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