welcome back for another post. Thought I'd update everyone on the state of the Spectrum10K incident from last month.
after a long stream of bad news for Spectrum10K (including many ties to eugenics & cures, serious lack of transparency and failure to abide by data protection laws) Simon Baron-Cohen announced Spectrum10K was being paused to review how they were going about it.
He officially stated he'd be talking to and listening to Autistic people about how to go forward, however, three weeks on from that announcement, and none of us have heard from him, so it's assumed he was bluffing and is buying himself some time to figure out how best to continue the study with the entire Autistic community calling him out on his lies.
in the meanwhile, since he went quiet, one of their advocates, Paula Wright, has been busy attacking Autistic people online for questioning the legitimacy of Spectrum10K, to a point that one of the largest and most influential Autistic advocates, Pete Wharmby (who goes by @commaficionado on Twitter) had to private, then disable his account entirely due to her harassment, before re-enabling it yesterday and announcing he was no longer going to be active in the Autistic community due to this incident, and that the account was only back for his other passions like writing.
This woman isn't just biased, she flat out defends Nazi genocides against Autistic and disabled people, by justifying that Asperger was only doing what he had to, and if everyone's so against Asperger (who hand-picked children who would be most useful for his purposes) then they should at the same time be against Oskar Schindler, who famously saved many people doomed to the camps during the holocaust, due to the fact that he could only save so many, no matter how hard he tried.
this is who Spectrum10K and Simon Baron-Cohen have representing them in public... right.
Many Autistic people, including myself, contacted the Spectrum10K account asking a question along the lines of "does what Paula Wright says reflect the views of Spectrum10K?" and all of us have received automated replies with nothing following afterwards.
at the same time, in announcing they were pausing the project, Simon Baron-Cohen and his team could not cease constantly specifying that they would be listening to "Autistic people and their families" - a phrase he cannot seem to avoid.
To me, this implies one of two things.
he is assuming that we cannot act for ourselves at all, and require familial consent instead of our own, or alternatively that he is only targeting people who cannot act for themselves and cannot consent for themselves as to negate the risk of people turning it down
an overwhelming majority of the people currently signed up are underage and cannot consent nor comprehend for themselves what Spectrum10K is, the risks it has towards the Autistic community, and so on.
I personally believe the 2nd. The emphasis on "and their families" in EVERYTHING implies that the Autistic people involved are too young to be able to question the project, let alone the blanket consent required to sign up allowing literally anyone in the future access to your DNA.
now, onto the 2nd part of the post, "why being an Autistic advocate can be a nightmare"
Trying to talk about stuff like this, the JRC, and all of the other horrible things that have been happening to Autistic people all year is extremely mentally taxing, and worse yet, the more we talk about it, the less we have to say.
Many of my fellow advocates have pointed out that we've all already said what there is to say regarding the JRC especially, but we're starting to reach that point with Spectrum10K as well on a quiet day.
when we have to spend large portions of our lives screaming into the empty void that is social media in order to get anyone to listen, we quickly run out of things to say, but still have a serious requirement to keep pushing the message out there for risk that going silent or slowing stops what little exposure the message was previously getting.
this leads to us burning out and constantly having to send out filler messages explaining "hey, this is still going on you know, some help would be really great" over and over, which disengages people from the conversation, meaning there is no winning scenario for us any more.
it's an issue all advocates likely face (especially when discussing topics such as disability, orientation, identity, etc. where there are only so many things you can say about the same core problem before you're just repeating yourself) but with the frequency and severity of Autistic burnout, it tends to be worse for us, since we burn ourselves out trying to think of what to say to keep the message going, yet force ourselves to continue out of the small hope it gets somewhere.
that'll conclude this part-post part-rant for today, thank you all for reading.
remember, if you sign up to our mailing list, you get notified of new posts!
- Josh.