Self-advocacy for people with Autism

CC BY-SA by HowardLake

CC BY-SA by HowardLake

Any parent of a child with autism has been an advocate at one time or another. We advocate to get services, medical treatments, and to spread awareness. As our children grow, it becomes necessary to give them the tools that will allow them to live as independently and fully as possible. Self-advocacy is crucial to individuals with disabilities.

What is self-advocacy?

Valerie Paradiz, Phd, author of Developing Self-Advocacy Skills: An Integral Aspect of Transition Planning, says,

“Self-advocacy is a life-long endeavor, and the teen years offer a particularly fruitful moment for cultivating self-awareness, self-monitoring, and deeper exploration of what it means to be autistic, by way of peer discussion groups. Self-advocacy differs from advocacy in that the individual with the disability self-assess a situation or problem, then speaks for his or her own needs. Learning how to do this takes practice and direct instruction. Too often, we raise our kids, treat our patients, and educate our students without ever speaking directly to them about autism. Perhaps we’ve make assumptions or even harbor fears that they aren’t capable of self-reflection. Yet if we deny kids this very important aspect of identity, we limit their ability to become the successful adults we want them to be. As with any academic subject, teaching self-advocacy takes training as well as knowledge of and respect for the disability movement. Parents can model self-advocacy at home, teachers can offer curricula in school, and most importantly, peers on the autism spectrum can offer strategies for good living and share mutual experiences.”

Self advocacy includes many skills, including speaking up for yourself, asking for what you need, understanding your rights and responsibilities, and knowing when and how to disclose information about your disability. These are skills that all young adults must learn, but for those on the autism spectrum, they can be quite challenging.

Parents can help their children develop self-advocacy skills throughout their childhood and adolescence by giving them the tools to be as independent and self-aware as possible. It can be so tempting to overcompensate for our children by doing everything for them, but this will never give them the skills or self-confidence to stand on their own. Offering appropriate choices, and teaching your child to ask for help are good skills to start with. It will also be necessary to talk to your child about their disability in an age-appropriate, realistic manner, so they will be understand the challenges they are facing and can be prepared to share their diagnosis when necessary.

There are many resources available to parents to help them teach their child self-advocacy skills. Books like  The Integrated Self-Advocacy ISA Curriculum: A Program for Emerging Self-Advocates With Autism Spectrum and Other Conditions by Valerie Paradiz, and Ask and Tell: Self-Advocacy and Disclosure for People on the Autism Spectrum by Ruth Elaine Joyner Hane, Kassiane Sibley, Steven M. Shore, Roger N. Meyer, and Phil Schwartz.

The Elizabeth Boggs Developmental Disabilities website offers a curriculum called “Keeping It Real” at http://rwjms.umdnj.edu/boggscenter/projects/keep_real_more.html. Groups like ASAN (Autistic Self-Advocacy Network) are another helpful resource for families and individuals.