Advocacy

A newfound friend across the ocean shared his journey of self-discovery, and the quality of the community he joined via his autism support group.

They have regular group discussions on important topics. Some of them intrigued me.

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Do you consider yourself an autism advocate? If so, what does that mean to you?

As per the dictionary:

advocate, noun: someone who strongly and publicly supports someone or something — OneLook

Yes, I suppose I can consider myself an autism advocate. My advocacy is limited to asserting and explaining, over and over, that autism exists and influences the way people relate to each other. I actively fight against autism denialism, when folk pretend that certain behaviors are personal choices and refuse to accept that neurodiversity breaks certain expectations about social norms. I haven’t made my mind up yet about whether it is a good thing; I cannot say I am a pro-autism advocate (but neither am I advocating against either).

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How would you ideally want to relate to neurotypicals, and how would you want them to relate to you?

To start, as decent human beings! With mutual respect and an open mind.

More concretely, I just wish folk were more mindful of differences. The same way that folk already pay attention and create social affordances for the differences between male and female physiologies; or similar to the growing understanding and affordances given to differences in education and cultural backgrounds.

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Do you see autism as a positive part of your identity? Why or why not?

It has not been a net positive yet. I will keep it at that today.

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Do you feel that you’re part of an autistic community?

Not really, no. I have a few friends who happen to be autistic, but this shared trait is not the main foundation for our relationship. I also have a few acquaintances whom I know from autistic support activities, but we don’t have enough shared activities now that I can call them a “community”.

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Do you think there’s such a thing as “normal”? If so, is “normal” something positive or negative?

To me, “normal” is a statistical model of the median behavior in a population. Since it is just a model, there is nothing positive or negative about it. It is also interesting to me to think about the fact that within a group, what is “normal” (statistically) can be very different from another group.

Also, like in every statistical model based on medians, only very few individuals will be exactly described by the model. Everyone else, individually, deviates from it in some way. Since only very few individuals are close to the norm, they are quite exceptional in that way too.

The idea of normalcy is useful to compare behaviors and compensate for expectations.

Previously, on this blog and on this topic: Nuances of normality (2013), Neurodiversity (2018).

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What kind of language do you use to talk about autism and why?

  • “autistic people”: OK.
  • “people with autism”: unacceptable. It makes me think about “people with homosexuality”, “people with monogamy”, or “people with left handedness” and then I laugh, and then I cry.
  • “people on the spectrum”: somewhat OK, but ambiguous: which spectrum are we talking about? The other spectrum that is highly relevant to most folk is their sexuality. It’s annoying and impractical to confuse the two.
  • “spectrum people,” the term that a certain MJ Carley is using: unsure. Doesn’t make my hair stand, but I still find it ambiguous. See above.
  • “high functioning” / “low functioning”: these are the extremes of another spectrum, which is how much support one needs throughout their life because of their autism. I think it is useful to talk about that spectrum of support and quantify it somehow; it makes it clear(er) to organizations what they need to invest to accommodate everyone’s needs. I do not believe it should be part of someone’s identity though, because support needs change throughout someone’s life.