This post originally appeared in the OARacle newsletter.
Imagine a young man with autism who is great with electronics, loves anime and graphic novels, and graduated from high school with good grades and a standard diploma. He also had great teachers and a personal assistant who were right by his side throughout his school career. An adult agency assigned him a job, which pays some bills and keeps him busy during the day. His parents, who love him dearly, have protected him from many of the difficulties of teenage life. Wouldn’t you call him a success? Wouldn’t anyone?
Yet when I first met him, he was miserable. He complained bitterly about being lonely, feeling incompetent and isolated. He had never been taught about autism and was not able to articulate his strengths and needs. He couldn’t manage money or make major purchases on his own. He didn’t know how to take care of himself, travel independently, or schedule activities that he wanted to do. Despite all of the love and help he had been showered with, he lacked the skills necessary to express his wants and needs and live as independently as possible.
Too often, young people with disabilities have things done for them that their typical peers do themselves and that, in most cases, they ought to be able to do themselves. This can range from picking their own clothes out in the morning to deciding what classes to take and which extracurricular activities to be involved in. All students, even those who are very young or have limited language, can be taught to become self-advocates.
What Is Self-advocacy?
Self-advocacy is having the right to make and express your own life decisions and choices. Self-advocacy refers to an individual’s ability to effectively communicate, convey, negotiate, or assert his or her own interests, desires, needs, and rights. It involves making informed decisions and taking responsibility for those decisions. Numerous studies demonstrate a clear link between teaching children self-advocacy skills and their ability to be happy, well-functioning adults.
Andrew: “Self-advocacy is the one thing keeping my social life afloat, and a normal life is possible because of it.”
Michael: “Without the ability to self-advocate, no one will know what you can or can’t do, or what you desire.”
Self-advocacy includes these components:
- Encouraging use of language that is inclusive, respectful, and person-first
- Knowing what services, modifications, and accommodations you require and being able to request them
- Knowing whom to ask and where to go to get assistance and support
- Understanding and expressing one’s strengths, talents, and interests
- Being able to create personal goals and follow a path to achieve those goals
- Having the ability to make choices
How Can You Help Children Learn to Self-advocate?
1. Include students in the IEP process.
- The special education law (IDEA 2004) says that all students must be included to the best of their ability.
- Use simple language or even pictures to help them understand their strengths and areas of need.
- Start to include children at an early age at their meetings, even if it is just for a few minutes at first, for introductions. (Having a favorite food at the meeting can help encourage their interest.)
- Have all team members speak to the student rather than about the student.
- Older students can prepare and share a PowerPoint discussing their IEP – goals, accommodations, present levels of performance – in their own words (and pictures).
2. Give children the freedom to make choices.
- Use preference and reinforcer surveys to determine what types of rewards and activities a child would like.
- Starting from an early age, present a child with choices: “Which do you want to do first, your math homework or reading?”
- Let them learn that they have the right to say “no” so that they can say it to requests that are unreasonable or dangerous.
- Role-play scenarios that involve making a choice. For example, if you are in a department store shopping, ask your child which person he would go to for help if he couldn’t find you. Role Play Scenarios Across Several Settings for Life Skills offers a number of scenarios for teens.
3. Teach self-advocacy skills.
- Use a checklist (like this one) to determine which skills a child already has and which he or she needs to learn.
- Children should know about their disability and how and when to disclose their needs to others. I’m Determined has some great resources for teaching children about their disabilities and disclosure. The Americans with Disabilities Act describes when disabilities must be disclosed and to whom.
- Teach children to start taking a role in planning their own activities, such as using a calendar.
- Encourage children to try to do activities that they can do on their own as independently as possible.
It is never too early — or too late — to start teaching your children about self-advocacy. You want your children to have the highest quality of life possible, even when you are not present to advocate on their behalf. Instilling in your child the ability to make choices, say “no,” locate people that can help them, and to be able to identify and select items and activities that they enjoy will help ensure that this goal will be fulfilled. Remember that it takes time and the support of your community to help all children self-advocate, but it can be achieved.
- I’m Determined
- National Gateway to Self Determination Pacer
- Autistic Self-Advocacy Network
- WVU Center for Excellence in Disabilities
- The Integrated Self-Advocacy ISA Curriculum
About the Author
Deborah Hammer is an autism specialist in the Arlington (Virginia) Public Schools, where she provides training and support to staff, students, and parents. She is co-chair of the Northern Virginia Transition Coalition and serves on the Fairfax Area Disability Services Board. She is the founder of Cool Aspies, a social group for young adults with ASD.