The below is a draft that I wrote in late Jan after a talk I gave. It was a bit raw to post then and I wanted some perspective before I did it. It was a panel discussion I really wanted to do but felt a substantial loss after doing it. I realise that that a lot of the issues were
At the moment I’m bouncing back from a talk I gave yesterday. It’s hard to want to/be responsible for representing everyone at a non inclusive environment at a non inclusive time. The invisible labour is intense,additional managing to juggle so many things at once (just talking about the presentation not nearly including the life/work things happening at that precise moment), and tactically making one’s way through the conversation was additionally a burden. I’m not crashing but I’m steering my plane through shakey weather.
So why was the presentation hard. Note that doing this is a CSI into what happened. Autistics (and indeed all ND folks) work differently than neurotypical folks. Personally it’s been a battle that I’ve had in every workplace that I’ve ever been in. Call a meeting with no agenda and talk about what you have on your plate. What I find in most meetings is that the person with the most status gets the voice. That wasn’t the case with this presentation but we did have very light structure. Walking in there (virtually) was fairly nightmarish. I was hoping that my passion and skills were getting me through the discussion, as I do with most departmental meetings in my life, feeling like a battle. But not knowing what was going to happen and not being able to rely on props/slides/what have you, was difficult.
I found that the virtual conference was difficult. The dates were in US format and the times were locked to USA eastern standard time. I don’t know why. It surely didn’t need to be. And as a presenter I had no idea where my room was which added to a sensory burden that I didn’t need.
The platform itself was very bandwidth heavy and as a consequence I needed to log out and lower my screen resolution, change to windowed mode and hope for the best in order to participate. It was geared for business level connection but I was at home at 5am and using my home broadband and had to switch to using my phone wifi as a hotspot.
Maybe the most difficult was something that I thought was going to be a problem. The webcam and reliance on cues. I can usually get by on in person panel discussions by throwing back to a moderator or raising my hand. This was a completely different story. Being so locked into trying to assess nonverbal cues and extraneous information was exhausting and made it very difficult to do. In fact getting back into the lecture after rebooting my connection lead to the issue of alerting the moderator to my presence which is a social game that I don’t know how to play.
And the time. 5:30am. I’ve done a few podcasts and presentations over the past 2 years at these early hours – from midnight to 7am. I’m very eager to lend a hand and soldier on. One of the main reasons though for saying yes to these times, and to be honest saying yes to most things is alexithymia. The way I know how I’m feeling is by observing my own reactions. Most of the time I won’t know that I’m upset, tired or angry unless I analyse my behaviour. So I’m really good for getting up at 3am and doing a lecture – but it will have a negative impact on my executive functioning that will take additional resources to get through. I won’t feel grumpy, and I won’t notice my boundaries being crossed.
I realise that things have to change. The world won’t change and I can’t expect it to instinctively be inclusive as much as I’d like it to. So I need to get better at telegraphing my needs. That’s difficult when I’m working them out still, but in doing that there’s a better chance that the world (or the people in it) will remember the things for the next person.
It’s been tricky this year. I realised how much I gained and lost. This is especially true of the autistic community. Of our little community. Pre and Post the mid year it went from strength to failure. I’m glad that I met so many people that validated my feelings by just existing and feeling so similar to my experience. The change from alienation to representation was like an incredible dream. The loss of people and a community was devastating. And returning to the neurotypical world (in the return to work) has been like smiling my way through loss. I need some time to process that change