Trigger Warning: Extensive discussion of ableism.
I mentioned to a family friend who has known me since early childhood that I've been involved with autism advocacy. She blinked, inclined her head slightly to the side, and asked, "Have you worked with children with autism?"
"No, actually," I responded in a calm, even tone. "I'm Autistic, and I know plenty of us." She stared, a little in confusion, as if not quite sure how to respond to that statement.
It's a question I get far more frequently than I like to admit or think about. Why does everyone automatically assume that because I can -- and do -- speak, and because I advocate, I must therefore be the relative or friend of an Autistic person, but not possibly Autistic myself? (And I have been diagnosed, in fact, by a neuropsychologist who specializes in ASD and who has sat on the board of an autism-related organization.)
And another thing. I had a conversation maybe a year ago with an acquaintance of mine, to whom I disclosed that I am Autistic. She responded, "But you're so smart!" And another acquaintance, at the same disclosure, interjected with, "But you seem normal to me." I'm expected to take this as a compliment. For some reason, looking normal makes me more human, because looking Autistic is a bad thing, something to be avoided, a taboo.
Some of you might not be familiar with the term "ableism." Some of you might be very painfully aware of it. For those who aren't, let me summarize. Ableism is the belief or attitude that an individual or group of individuals are superior or more human on the basis of their ability than people with disabilities, including Autistic people. Ableism is the belief or attitude that people with disabilities, including Autistic people, cannot have agency, cannot really advocate for themselves, should be pitied or cured, and cannot accomplish much so long as they continue to be disabled.
It's like racism, but against us. Me.
I grew up in a privileged suburb of Boston that around the 2010 census last year, still had over 90% White (Caucasian, European-American) people in the population. Less than 4% of people in my hometown were below the poverty line. Some houses went for a few million dollars. Walking around my hometown, you won't see homeless people or gang members on street corners. You won't see poverty or even much diversity. I hadn't thought about racism much because despite being Asian, I lived in a fairly homogeneous area and went to a regional school with a very culturally diverse student body.
That's privilege. It's not always recognized, acknowledged, or understood, but that's what it is. I never expected to be discriminated against on the basis of my race or religion (I'm a Protestant Christian in an area where a decent majority of the population identifies as some form of Christian), and never experienced that kind of discrimination. No racism here.
But ableism was a different animal altogether. I can't tell you how many times I've been told, "Well you're not really Autistic" or "You seem to be very high-functioning" or "I don't think you're really Autistic." And every time I mention my advocacy work, the mild look of curiosity, head tilted to the side, innocent, almost hesitant question -- "So do you know someone...?"
Why can't I be an advocate and Autistic? Why is it assumed that the only possible reason I would have any involvement or leadership in autism advocacy is having an Autistic relative or friend who certainly couldn't advocate for him or herself, and therefore I must advocate for this individual?
Parent advocates certainly have a time and a place and a valued opinion when advocating for their own children -- as minors -- or when allying with those of us who are Autistic in advocating on the larger level. I'm not writing this to disparage your role, undercut you as advocates, or accuse you of bad parenting. I'm writing this because I'm sick and tired of ableist attitudes -- whether from you or anyone else. (And certainly not all non-Autistic parents of Autistic children think in ableist ways. The problem is that plenty do. Many. Maybe even a majority.)
Think of it like this. Imagine an African-American/Black Civil Rights group led by a board and staff of White people, claiming to speak on behalf of all African-American/Black people, whose (White) leaders are thought of as revolutionary and innovative civil rights activists and advocates, and who rarely, if ever, include actual African-American/Black activists and advocates in their leadership or planning or policymaking. Or a LGBTQ Civil Rights group led by a board and staff of cisgender heterosexual people, claiming to speak on behalf of all LGBTQ people, whose (cisgender heterosexual) leaders are thought of as revolutionary and innovative civil rights activists and advocates and...
Both of those ideas would be abhorrent or objectionable to most African-American/Black people or LGBTQ people, and probably laughable even to potential opposition to the aims of those civil rights movements.
So why is this not only acceptable but the norm in autism advocacy?
Why is it assumed that Autistic people have no agency, are not competent, and cannot possibly understand the intricacies of advocacy?
Why does every person I meet assume that my advocacy makes me the non-Autistic relation to an Autistic person?
It's not something I can begrudgingly accept or resign myself. It's wrong. It's grossly unfair. It's ableist. And every single time it happens, I wince; my breath catches in my throat; my voice tightens; I can barely speak; the words struggle to slip past my lips; I look the person in the eye; I say, "Actually, I am Autistic. A large number of us are advocates."