My weekly roundup of responses I have posted to other people’s posts here on Medium, for those who don’t feel like scrolling through the Responses tab on my profile.
May 27, 2018
To conclude this rather lengthy musing, we’d love our followers’ feedback on the triad of impairments within autism — how valuable is it in today’s more enlightened culture and #actuallyautistic mindset, whereby autists promote acceptance?
I mostly hate both the impairment-focused approach and the advantage-focused approach. The latter grates on me because I feel like it’s akin to the fetishization of autism you see in Hollywood where autism means savantness. I’m no savant. And while things that go along with my particular autism feature set, like the anxiety and the emotional breakdowns, could be viewed through some lenses as a disorder, overall my autism just feels like I am differently ordered, or, I guess, ordered differently, inside. The difference, when it clashes with a world structured for allistic people, can feel like an impairment, but much of that is because many allistic people don’t yet know how to alter or adjust the way in which they are privileged by neurotypical normalcy in a way that accommodates the autistic. TL;DR: I don’t feel impaired or disabled, per se, until and unless people ignorant of how social norms advantage them and disadvantage me make me feel that way.
Over the past decade or so, evidence has emerged from economics, psychology and neuroscience showing that humans tend to go through a kind of emotional reboot around midlife. It’s often experienced as a period of malaise and dissatisfaction, but normally it is not — contrary to stereotype — a crisis.
It sure feels like a crisis when that midlife is paired with an autism diagnosis that comes too late to do anything about how over decades that condition secretly determined the shape of that midlife.
June 1, 2018
That doesn’t mean you have to design one-size fits all experiences because there’s no such thing! Everyoneis different in their own way.
I find that my big concern isn’t designing for me as an autistic person, but designing flexibly, so that different people could use them in ways that suit them. My big beef for the past year or so is that I had to stop fully engaging on Instagram via my nonprofit’s account because the algorithmic feed hurts to use. I can’t stand the feeling of not knowing where or when various posts happened in terms of chronology or the story people are telling with their posts.
I’ve met people who view the autism spectrum as a straight line of symptom severity. I find this to be really unhelpful — especially for when people are trying to understand me and my support needs. At a high level, Autism Spectrum Disorders are classified into 3 levels, ASD levels 1,2,3. People will often take this piece of information, look at me and say “Well you’re just an ASD level 1 so fix it because you’re annoying me”.
I saw the color wheel idea somewhere a month or two ago; for all I know it was from you but posted elsewhere. Interestingly, I find the color wheel itself kind of sensorily overwhelming. Like, I grasp it intellectually but trying to feel it makes me anxious? A while back here on Medium I came across someone using a soundboard metaphor, and for some reason that one works really well for me. (I bring this up not as a dismissal of the color wheel, which clearly helps people, but just to offer another alternative to the flat spectrum.)