What is Autism Advocacy?

The the main categories of autism advocates.

It’s a word anybody who is familiar with the autism community has heard – advocacy. It seems as though everybody is an advocate for autism. Some are advocating for better services, and for laws aimed to help families and fund research. Others are advocating for their own children, dealing with doctors, schools, or bullies. And many adults with autism are advocating for themselves, educating others about the disorder and working towards a better future for all.

Clearly, advocacy covers a wide range of activities. It encompasses everything from national organizations fighting for funding and better services to individuals trying to help their children succeed in school. In this series of articles, Autism Daily Newscast will break down the various types of advocacy, and help parents differentiate between the different types of advocacy within the autism community. We will also discuss strategies for hiring an advocate, and for helping your children learn to advocate for themselves.

One of the most visible forms of advocacy comes from national groups such as Autism Speaks or the Autism Society. Groups like these works towards various goals that benefit the greater autism community. These include things like raising funds for research, getting laws passed that benefit families, and raising awareness. Advocates who work for these organizations are often professionals, such as lawyers, politicians, or lobbyists, though there are also parents and individuals with autism who are drawn to the field.

The next level of advocacy includes professionals who work with families to secure medical treatment or educational opportunities for their children. These may be lawyers, educators, or professional advocates who can advise parents and individuals on their rights, and help them gain access to appropriate treatments and educational accommodations. Many families turn to professionals when they have been unsuccessful at negotiating with medical professionals or schools.

Then there are the parents. Almost all parents of a child with autism have been an advocate at one time or another. Participating in an IEP meeting, educating family and neighbors about autism, or posting an Autism Awareness meme on Facebook are all activities that could be considered advocacy.

Many parents find themselves becoming advocates when their child is faced with difficult situation, such as a school that is unwilling to make accommodations for their child. Many organizations, including Autism Speaks and the Autism Society, offer resources to parents who are seeking more information on how to best help their child.

Finally, there are the self-advocates. These are adults with autism who are advocating for themselves. There are many books about self-advocacy, including 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.

Our next article in this series will discuss when and how to hire a professional advocate.


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About Laurel Joss

Laurel Joss is a freelance writer with a Master’s Degree in Early Childhood Education. She worked as an RDI® Program Certified Consultant and has published articles in Autism Spectrum Quarterly and on her blog www.remediatingautism.blogspot.com. She is a mother to two children, one of whom is on the autism spectrum. You can also follow her on https://twitter.com/speaking_autism and https://www.facebook.com/speaking.autism.ca