The Unglamorous Details

Some people seem to have the idea that autistic civil rights advocacy is all glitz and no substance—that it's mainly about looking good to impress the public, such as by creating popular blogs, being interviewed in newspapers and magazines, appearing on Good Morning America, and so forth. The detractors ask: How is the neurodiversity movement helping those autistic people who are struggling with serious difficulties in their daily lives and who are not writing blogs or making media appearances?

In fact, like other civil rights efforts throughout history, most of the work is being done in the trenches, quietly and with no fanfare. When an autistic employee makes the difficult decision to be "out" in the workplace and to talk about his or her differences with co-workers and managers, this is autistic civil rights advocacy, and it is helping to make our workplaces more understanding and accommodating for people with neurological differences. When a parent actively seeks to improve a school district's policies to ensure that autistic children are included in school activities and that their teachers receive the proper training to understand their needs, this also is autistic civil rights advocacy.

The Central Pennsylvania chapter of the Autistic Self Advocacy Network, led by ASAN's vice president Scott Robertson, announced yesterday that its advocacy efforts helped to obtain the federal government's approval of a Medicaid waiver for autistic adults in Pennsylvania. This waiver, which is the first such waiver in the United States that is specific to autistic adults, will benefit autistic adults in Pennsylvania who have self-care difficulties and who are not currently receiving services. Funds will be provided to enable access to needed supports and services for housing, employment, other activities of daily living, and integration in the community.

You probably won't see anything about this Medicaid waiver on the mainstream news sites, and the recipients are not likely to be writing popular blogs or making media appearances. It's not much of a story—unless you happen to be one of the recipients, that is. Because of the advocacy efforts of the autistic civil rights movement, they will now be able to stay in their own homes and hold productive jobs in the community, rather than being warehoused in institutions or group homes. This is how the neurodiversity movement is helping to improve the lives of real people in our community—through sustained and committed efforts, most of which are made with no cameras around anywhere.