Survival guide for families growing up with autism

We all want our children to be able to self-advocate: to speak up for themselves and their rights, to stand up to those who would bully or use them, to know how and where to ask for help when needed. In general, to go forth into the world as adults without needing a parent or teacher to negotiate and smooth every bump in the road for them.

We know they’re good enough; most of our children with autism have a strong sense of integrity, a basic, innate goodness of spirit, and a heartfelt desire to do the right thing.

We may even know they’re smart enough; some of our people on the spectrum score much higher on IQ tests than many of their peers who seem to have no difficulty making their way in the world.

But we also know that, unlike typical young people their age, our young adults are seldom prepared to make important choices, to follow through on necessary steps to reach a goal, or to cope with those unexpected surprises life has a tendency to throw at us.

Most of us have assumed that our children would gain these skills over time as they mature, much the way their typical siblings and classmates do. By the time we realize it’s not happening automatically (meaning without direct instruction from us or their teachers) it’s a little late in the game.

But it’s not too late.

We’ll be discussing some of the things we, as parents, can do to help our children learn to advocate for themselves. If they are still in school, we’ll talk about some ideas to bring up at the IEP meeting regarding transition and self-advocacy. Wherever your child is right now along that path (or even at the very beginning about to step or be pushed onto the path) there are steps to take.

In the meantime, leave a comment, a question, or especially tips for others in our shoes – what was most useful in helping your child learn to stand up for himself? What advice or book or guidepost can you share? Don’t keep it to yourself.

(Next post: Self-Advocacy 2: Where do we start?)


Comments on: "Self-Advocacy 1: What’s the big deal?" (4)

  1. This is a big issue for us! I remember the intense grief I felt as a child when I didn’t get something I needed or wanted because I just couldn’t open my mouth to ask. Kills me to see my son doing the same. Example: if part of his lunch requires a spoon and I forget to put one in his lunch box, he simply won’t eat it, rather than ask for a spoon in the lunch room. Luckily last year he had a motherly little girl in his class who would ask on his behalf. Other times he’ll tell me about something another kid did to him at school, but it was a week or more in the past and often too late for any action. I’d love to hear what others have to say on this topic!

    • Cari, I agree, this is a big issue. Thank goodness for those “motherly” little girls that look after our kids. But of course, we want them to learn how to advocate for themselves. Roleplaying, practicing, social stories, a lot of things can be useful, but most important first is just the awareness that we need to teach our kids on the spectrum basic self-advocacy that may be natural for our other children, without the need for direct instruction. I’d be interested in what others have to share about this, too. Thanks, Cari, for sharing your experience.

  2. I love this idea of self advocacy! I teach 3-6 grade kids on the spectrum and we do this a lot with them. They might say, “I don’t have a pencil.” We will respond with, “What should you do?” They may say, “She is saying mean things to me.” We respond, “What should you do?” We try not to jump in too quickly and allow them time to problem solve. It’s such a joy when you start to see them problem solving on their own. Of course, it starts out small with a simple request for a pencil or aksing a peer not to talk to them that way. But, hopefully it translates to bigger, more important self advocacy skills later on in life.

    • I’m so glad you are working on self-advocacy with your students in elementary school! We do need to start this early. Thanks for sharing these simple and effective tips!

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