In early December (2011), a friend told me that the Psychology Department and Psi Chi Psychology Honors Society at Georgetown were hosting a panel called "Multiple Perspectives on the Autism 'Epidemic.'" At the time, there were three panelists: Roy Grinker, a medical anthropologist whose daughter is Autistic; Matt Biel, a clinician at Georgetown's Clinic for Autism and Communication Disorders; and Anne Gibbons from Autism Speaks, who also has an Autistic child. Three people with very different perspectives and ideas, but despite the title of "Multiple Perspectives," one perspective in particular was sorely lacking -- that of an Autistic person. None of the panelists on that list are Autistic.
Particularly for a panel called "Multiple Perspectives," it seemed an egregious omission to exclude an Autistic person from participating on the panel, particularly when there are Autistic adults with backgrounds in research or psychology. We were not included in the conversation. There was going to be Something About Us Without Us. I wrote to the panel organizers and met with the professor who advises the Psi Chi Honors Society to express my concerns about holding any panel about autism, but particularly one advertising "multiple perspectives," without any Autistic speakers. Thankfully, the event planners were receptive, and they issued an invitation to Scott Robertson, an Autistic activist and a Ph.D. candidate researching disability studies and assistive technologies in the College of Information Sciences and Technology at Penn State University. The panel's name was later changed to "Multiple Perspectives on Autism Research," and ultimately featured five panelists.
But the problem with what the event planners did lies with the mindset that allowed them to go about planning an event intended to feature multiple perspectives on autism without thinking to include an Autistic person as a panelist. While I was told that the panel was drawn together primarily by the students involved reaching out to their own connections (and there's nothing wrong with that in itself), that's still no excuse for not realizing that a panel about autism with multiple perspectives must have at least one Autistic perspective.
Unfortunately, this is normal behavior.
Last year, one of the fifty states' autism commissions was originally supposed to have a few Autistic self-advocates serving as members of the commission, but when it was decided that there were too many people on the panel, the first people to be cut were the Autistics. At a recent disability related conference, a woman with an Autistic son spoke about issues affecting Autistic people, despite the fact that her sixteen year old son could speak perfectly well for himself. This week, a high school hosted a speaker to talk about autism. The speaker is the parent of an Autistic child.
If we were talking about people in wheelchairs, Blind or Deaf people, people with cerebral palsy, or people with learning disabilities, it would be unthinkable to hold a panel or an event about those people without at least one of them included meaningfully. If we were talking about Blacks or African Americans, Jews, Lesbians or Gays, Women, or Muslims, it would be considered insulting (at the very least) to exclude a member of that group, and absolutely unconscionable at the worst. Yes, caregivers of people in wheelchairs have valuable ideas and opinions about issues facing people in wheelchairs. Yes, White or Caucasian spouses of Blacks or African Americans have valuable ideas and opinions about issues facing Blacks and African Americans. Yes, non-Muslim scholars of Islamic Studies have valuable ideas and opinions about issues facing Muslims.
But those people cannot speak for members of a group to which they do not belong. A non-Muslim scholar of Islamic Studies might be very educated about various aspects of Islamic theology, jurisprudence, and political history, but a Muslim, by nature of being Muslim, will understand far more about what it means to be Muslim than any non-Muslim. Every Muslim in the world does not share the exact same experiences, level of piety, or beliefs as every other Muslim, but they do share one thing that no non-Muslim will have -- the characteristic of being Muslim.
This is true of Autistics as well. You cannot discount an Autistic person because he or she can't possibly speak for every single other Autistic person. No two Autistic people are going to have the exact same experiences, abilities, or challenges. But any Autistic person will automatically, by nature of being Autistic, understand far more about what it means to be Autistic than any non-Autistic. If you exclude an Autistic person because he or she does not represent in every possible way the experiences of every other Autistic person, then you make it impossible to logically include any Autistic people in any conversation about autism.
Nothing About Us Without Us has been a foundational principle of the disability rights movement since its inception in the latter half of the twentieth century. It's very simple. Nothing About Us Without Us means that whenever there is a conversation about us or about issues that directly impact us, we must be included at the table and given equal voice as the other participants.
While it has become standard practice to have conversations about autism and Autistic people without Autistic people, this is a practice that must change. Autistic people and our allies have routinely criticized events and conversations about us without us. Now it's time for the public to realize that this repeated fallacy represents a failure of society to change its attitudes about us. We can speak (or type or write or sign) for ourselves, and it's time to listen. It's past time to include us in the conversation.