News and Knowledge

At a recent workshop I led, we had a great discussion on the definition of self-advocacy, practicing a three-step model for determining when advocacy is necessary, the development and implementation of an advocacy plan, and the required disclosure explaining why an accommodation or greater understanding was necessary.  We came up with solutions for addressing challenges people on the autism spectrum commonly have in sensory perception, how we think and in socializing with others.  We even modeled self-advocacy using brief case studies.

Discussions like that are common to many of the workshops I give throughout the country. When we began focusing on real life implementation in the adult worlds of higher education and employment, however, the discussion changed.  “What do you mean your supervisor won’t make the simple accommodation of changing a few lighting fixtures or provide written documentation for performing a work task?” I asked.

The difference? We were in Moscow, Russia. As honorary president of the Asperger Syndrome Support Network of Russia, I feel it is vitally important for individuals on the autism spectrum in the Russian Federation and throughout the world to understand and successfully advocate for themselves as an important key to leading a fulfilling and productive life.  Although these individuals on the autism spectrum were ready to engage in self-advocacy, their society was not quite ready.

The experience with the Asperger Syndrome Support Network of Russia has been mirrored in many other locations around the world. Two possible major driving forces causing disconnect in implementing effective self-advocacy on an international basis have occurred to me.

The first is societal development. The United Nations recently passed the Convention on the Rights of Individuals with Disabilities, which has spurred new laws for educating children with special needs and supporting adults with disabilities, often modeled on legislation from the United States.  In addition, the Internet is making information about many subjects related to disabilities, such as education and self-advocacy, easily available.

However, the second is a work in progress. The implementation of education and self-advocacy is extremely challenging, as the U.S. civil rights movement of the 1960s and the initial efforts to make special education available in the 1970s illustrate. In the United States, we now have nearly a half century of practice in supporting individuals with autism and other special needs and developing an infrastructure where self-advocacy becomes possible. I use the word “practice” purposely because, like medical professionals, we are continually honing our skills in these areas.

Yet, what I find encouraging is that organizations in countries such as the Russian Federation, the People’s Republic of China, India, and others are reaching out to individuals in the United States and other countries who have greater experience in special education and self-advocacy. By reaching out to learn from successes and failures in countries with histories of implementing laws to ensure access to special education and the guarantee of civil rights and well-established self-advocacy movements, the future of supporting individuals with special needs and the practice of self-advocacy looks bright in countries around the world. Let’s join forces with the advocates and champions in those countries to improve the lives of those with autism and other differences everywhere.

Stephen Mark Shore, Ed.D., is a professor of special education, consultant, workshop leader, and part-time music teacher, focused on improving the lives of individuals on the autism spectrum. He recently joined OAR’s Scientific Council. Nonspeaking and diagnosed with “atypical development with strong autistic tendencies” at age 2 and half, Stephen was fortunate to have parents who refuted professional recommendations for institutionalization and asked, “What can our child with autism do?”