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Last Updated: 11/20/2017
 

Advocacy

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Learning Self-Advocacy Skills

Dan Coulter, November 2006

 
What's the most important skill a high school student with Asperger Syndrome or autism can learn before he or she graduates?

Run a list of candidate skills through your head. It's a good exercise.

Was self-advocacy on your short list? I think I can make a good case that it should be.

Whether your student is bound for a job or for college after graduation, he's almost certainly entering a much less protected environment. Many students on the autism spectrum are used to having a lot of things done for them. A student who hasn't learned to speak up for herself in high school isn't going to magically acquire the ability when handed a high school diploma.

If your son gets a job, will he ask the right questions if his boss gives him a task he doesn't understand?

If your daughter goes to college, how will she react if she doesn't catch the details of an assignment?

For many people on the spectrum, it's especially hard to speak up and ask for directions or for help. Sometimes that's because they don't want to call attention to themselves -- or look different. And many kids on the spectrum would be at a loss to explain their challenges and what accommodations they need to perform well in a job or in a college class.

At a recent admissions seminar at High Point University near my home, a counselor explained a common reason that students with disabilities appeared before the academic review board after receiving poor grades. It was almost always the case that the students either hadn't asked for accommodations, or hadn't used the accommodations that they had been granted.

I've heard a number of accounts where someone on the autism spectrum lost a job because of problems that started with miscommunication with a supervisor.

Knowing this, you can help your kids avoid these pitfalls. Your son or daughter doesn't have to disclose his or her condition to everyone, but when they need and want to, can they -- and will they? By the way, it's common for parents to assume that a child on the spectrum knows more about his condition than he actually does.

So, find out what your student knows. Sit down with your son or daughter and talk about the importance of self-advocacy. Ask them what they know about their condition and about any accommodations they're receiving at school. Use what you discover to fill in any gaps in their knowledge, then plan a program of activities that will continuously build their ability to explain their condition without embarrassment and describe what they need in a particular situation. Sometimes, what they need may turn out only to be detailed instructions on how an assignment or job needs to be done.

Show them the benefits of learning self-advocacy by tying their progress to privileges. The more situations they show you they can handle, the more independence you give them.

If your child has an Individualized Education Program at his school, make sure he knows what's in it. Discuss the plan with him before school IEP meetings and help him take an active part in the meetings. Consider making one of your child's IEP goals that he develops the ability to explain his condition and describe his needed accommodations to an employer or instructor. If you need help with your IEP, there's an excellent article titled, "Writing Individualized Education Programs (IEPs) for Success" by Barbara D. Bateman on the Wrightslaw website at  http://www.wrightslaw.com/advoc/articles/iep.success.bateman.htm.

When your child has doctor appointments, get her used to talking to the doctor directly. You may want to explain to the doctor ahead of time, or at the beginning of the visit, that you're preparing your student to manage her own medical care, and that you'll be mainly an observer in the examining room.

It's also important to develop your child's ability to explain what he needs or wants when no mention of his condition is required. In stores, in restaurants, at events, etc., take every opportunity to have your student take the lead in interacting with people. Explain what he'll need to do in detail beforehand. You can stand by in case you're needed, but don't be too quick to step in and take over when there's a problem. You can think of yourself as a lifeguard. You don't want to let your charges drown, but everyone swallows a little water while learning to swim.

Recently, I interviewed Dorothy Wells, Assistant Director of Disability Support Services at the University of North Carolina at Pembroke. I asked her the most important things a high school student with Asperger Syndrome or autism should do to prepare for college. She said, "It's simple, start going to your IEP meetings and get comfortable talking to people about your special need."

You can think of self advocacy as a crucial "enabling skill" that allows your son or daughter to apply the other skills they've learned to succeed in class, in a career and in life.

Self-advocacy may not be the most important skill on your list of things to teach your high school student. But it may be the most important skill that's not on your list -- and should be.

ABOUT THE AUTHOR: Dan Coulter is the writer/producer of the videos, "Asperger Syndrome: Transition to College and Work" and "Asperger Syndrome: Transition to Work." You can read more of his articles at: www.coultervideo.com.

Copyright 2006 Dan Coulter All Rights Reserved. Used by Permission.

 

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