I blogged a little about the extreme of thinking autistic adults have nothing to teach about autism. But there’s another extreme as well, which is thinking it’s OK to use autistic adults as living reference guides, or putting too much emphasis on the experience of a single person.
Jim Sinclair coined the phrase “self-narrating zoo exhibit”, and in her book Like Color to the Blind Donna Williams uses the phrase “walking autie textbook.” From the everything2 entry on “self-narrating zoo exhibit” which I highly encourage you to read in full,
One of the most common reactions to an autistic person is to ask questions about autism, including extremely personal questions. While most of us understand this reaction, we also perceive it as treating an autistic person not as a person but as a dehumanized information source or a “walking autie textbook.”[ed., Williams]
It is not the curiosity most autistic people object to. It is the expectation that we are obligated to answer, and the constant — and sometimes impossible — nature of the questioning.
Autistic people have lamented the tendency for others to interrupt our discussions of human rights or other political topics, in order to ask us about our toilet training or sexual histories. This aspect of the self-narrating zoo exhibit phenomenon has caused many autistics to give up mentioning our autism altogether in some contexts, to avoid the inevitable barrage of questions.
A related danger to this is people who, on querying a single autistic person, then generalize that one experience to the entire population. How many times have I had people assume I must be a highly logic-driven entity just because that’s what Temple Grandin has talked about! (I am in fact most driven by the fluidity of my intuitions, shhhhh…). No single autistic person could possibly ever have identical experiences to any other; outside of meeting certain diagnostic (behavioral) criteria, we are as diverse as non-autistics!
Because I was fortunate enough to get into the speaking-about-autism business after others had alerted me to these dangers, I’ve been very cautious. I do speak about perspectives of autism from the inside, particularly to social service workers, but I have extremely strong boundaries about what I am willing to disclose, when, and why. I also emphasize human rights, challenge assumptions and bias, hammer on the need to take multiple perspectives. And I make it clear that while my expertise as an autistic person is relevant, my expertise in technical communications, systems thinking, and domain knowledge is the reason why they hired me. Even so, otherwise perfectly nice people I train badger me with requests for more details about my love-life, childhood, and meltdowns, and I then have to decide whether it’s worth it to me to explain why the request is deeply offensive or just simply decline and move on.
Somewhere in between being invalidated as irrelevant and being set on a pedestal inside a zoo cage is a balance point of equal exchange between human beings. Ultimately it’s about equality and respect.