I commented on an online discussion today about autistic people. The conversation basically went like:
- (person A) [states a premise that isn’t supported by research, but is their belief]
- (person B) [states a different premise that also isn’t supported by research, but is their belief and uses personal experience to demonstrate it is true]
- Joel: Actually, I disagree with person A on this, for [this reason] and with person B because it’s also unsupported by research on this.
- (person C) Joel, that’s just your experience. Other autistics are different than you. We also need research on this.
That’s pretty common as a response to comments from an autistic person. When we say, “Uh, no,” and describe our disagreement, two things are immediately assumed by some people (too often, these people are parents, so that’s the example I’ll use, but of course not all parents do this, nor is everyone that does this a parent):
- Joel, you don’t know much about autistic people other than yourself.
- Joel, you are nothing like my kid, so what you say doesn’t apply.
Now, I never argue that I am like someone’s kid (for one, I’m an adult, and most kids are well kids; for another, yes, I do know that there are lots of different autistic people).
But on the first point, I’m actually a bit more knowledgable than people seem to think when they dismiss my views on the basis “it is personal experience.” No, I try to make it clear when it is personal experience and when it’s not. (Ironically the writings that I’ve written that have the fewest criticisms are writings I wrote based on personal experience alone – probably because of the ease in dismissing any need to take into consideration a different opinion) Yes, my experience informs me, but I – believe it or not – actually know that there is a wide variation among autistic people. I have a bunch of autistic friends, all very different. And I’ve met plenty of autistic children. But beyond that personal experience, I’ve talked to researchers and experts, read their reports (and criticized some of them when warranted!). I actually know some things through means other than personal experience. And when dismissing personal experience, outside of baseless generalization (if someone says something applies to all autistic people, an autistic person is perfectly justified in saying, “It doesn’t apply to ME”), I try to explain why I am saying something, and often even provide citations. Because I don’t want to be ignored.
Strangely, the people that dismiss my views as personal experience and an experience unlike that of their child generally know very little about my personal experience. But, beyond that, often the personal experience of raising an autistic child is considered relevant. Few people question a parent who says something about autism and cites their experience with their kid as an example – that personal experience is acceptable. That’s valued.
I find that interesting. And ironic.
I also find the conversation today – one like many I’ve had – interesting in that people say that we need research on this topic while being ignorant of the research that is already done. Now ignorance of research isn’t a horrible thing – that’s normal. I certainly don’t know all that is out there, and there is no reason someone else should either. But most of the time when I talk about the research in such a case – because the research most likely supports what I’ve already said! Instead, I get, “Well, autistic people are different and we need more research.” Uh, maybe. But maybe we should start by figuring out what research is out there, whether it is any good (that would likely involve reading it prior to criticizing it), and being willing to expand our mind a bit. Too often, “We need to research X” really means, “We need someone to confirm what I’m saying.” That’s not cool. Willful ignorance isn’t as benign as simple ignorance.
Now, I’m fine with people disagreeing with me. I’m not driven by a need to be right (really!). But I do demand – when it affects people’s freedom and rights – that people saying or doing things to restrict that freedom or rights actually have a valid reason for what they are doing, beyond personal experience or calls for yet more research (particularly when the research actually exists!). So, disagree with me. But back it up. And perhaps we might both learn something beyond who is right.