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Mark Autism Awareness Month by Surveying People With Autism

Every April 2, Autism Speaks, an advocacy organization, encourages landmarks to “Light It Up Blue” — adding or tinting external lights as a sign of solidarity. The Empire State Building, the Tokyo Tower, the Nelson Mandela Bridge and even Brazil’s titanic Christ the Redeemer statue were among the landmarks that participated Thursday.

But even during a day and month devoted to autism-related events (April is “Autism Awareness Month”), people with autism tend to be left out. In advocacy efforts and in survey research, the voices of people with autism are frequently drowned out by neurotypical people speaking about autism.

Autism Speaks is a controversial organization. Autistic activists have taken the organization to task for the absence of people with autism on its board, the organization’s focus on finding a cure, and ad campaigns that equate autism with kidnapping or tell parents that autism “will make sure your marriage fails.” Autism Speaks tends to appeal to parents of children with autism or the public, while people with autism form separate organizations to advocate for their interests.

There’s plenty of medical research on autism, but there are few surveys of people with autism. It’s not for a lack of possible respondents — the federal Centers for Disease Control and Prevention estimate that 1 percent of Americans meet the criteria for autism spectrum disorder. But it’s still rare to see people with autism being asked about their experience.

The National Autistic Society surveyed 1,400 families affected by autism in 2006 (“B is for Bullied“), but, by design, the study did not speak to adults with autism, because the researchers’ focus was on schools. For the main survey, parents spoke for their children, and 28 children with autism were chosen to be interviewed individually.

Ari Ne’eman, president of the Autistic Self Advocacy Network, sees a lack of survey research as an example of misplaced priorities in autism research, which he thinks largely ignore the needs of adults. “We need to see needs met across the whole lifespan,” Ne’eman said.

A 2012 study published in Developmental Psychology (“Deficit, Difference, or Both? Autism and Neurodiversity“) was one of few to ask people with autism about their experiences and wishes; it surveyed a mix of self- and officially diagnosed people with autism about how they experienced their autism, how they felt people with autism should be parented and how they preferred for people to refer to them (“autistic person” versus “person with autism”). The study relied on word of mouth and advertisements to recruit participants, rather than a more rigorous and representative sampling technique.

Pulling off representative surveys of people with autism isn’t just a matter of placing more robocalls. Conventional surveys cannot be completed by nonspeaking people with autism or those with severe communications impairments. But if organizations are looking for a model, Ne’eman recommends the National Core Indicators project, which has surveyed people with autism as part of its project to assess surveys for people with developmental disabilities.1 To conduct its surveys, NCI uses assistive technology, in-person interviews and other modifications to reach each person in the study.

What really needs illumination aren’t landmarks in a general awareness campaign, but the specific views and needs of people with autism.

Footnotes

  1. The National Core Indicators project is not a representative survey of people with autism; it targeted only those categorized as developmentally disabled.

Leah Libresco is a former news writer for FiveThirtyEight.

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