Thread by @ekverstania

A certain autism service organisation I've dealt with for 12+ years tends to have staff and leadership churn, causing them to lose all their institutional knowledge.

This has lately resulted in me dealing with a nice, new, freshly gratuated appointee, who knows very little.

So every few staff-churn cycles, it seems that they go, "Oh dear, we've been doing mainly children, we'd better chat to some adults to find out what services they need."

I think this one is also becoming as perplexed as the last two were who were sent to talk to that difficult activist in their jurisdiction (me).

Granted, I'm a bit of an outlier (as are a handful of my friends); but what do I need help with from this autism service organisation?

Here goes:

🟡 Support for the #BanABA campaign.

🟡 For their staff to be trained in the #CRPD, with a view to transforming the organisation to have a board consisting of more than 50% of the members are #ActuallyAutistic, including Black and nonspeaking autistic representation.

🟡 Support for an initiative to train their staff and people in key government roles (healthcare, education, policy) in disability rights and autism from #ActuallyAutistic points of view, including anti-ableism training.

🟡 Fundraising for a massive regional AAC campaign in collaboration with @AutisticSpeak. A vision and strategy for providing communication access to poor people in the region, as a top long-term priority.

🟡 Administrative support for training events for provincial healthcare employees, on common health issues among autistic people, and how to work with autistic patients in hospitals and clinics. Development of success measures for this training.

🟡 Support in lobbying for school transport for disabled children in poorer areas.

🟡 Visible support for our #StopChemicalRestraints campaign, and assistance with the investigation of possible perpetrators.

My new contact was surprised to learn that we have an autistic social club running in the city and one that includes families with autistic children. Yes, run by #ActuallyAutistic people.

🟡 Step-by-step support for homeless and abused autistic people, and homeless people with autistic children -- not fobbing them off with lists of phone numbers. Yes, employ and train more social workers so that you can do this.

🟡 Get that woman you fired back as a consultant or contractor to help you deal with employers. She was fantastic at explaining why people needed accommodations, and she could sort things out fast if people were having a hard time at work.

🟡 Collaboration on a white paper or strategic plan for a diagnostic programme to clear the current diagnostic backlog, and ultimately to replace the diagnostic criteria currently in use to better align to lived experience, biological realities, and related conditions.

🟡 Assistance in expanding the #CRPD training offered by @AfricanAutists for self-advocates and allies (which in turn will help empower more autistic people to participate in some of the aforementioned initiatives).

Their present top dog is a man with whom I've clashed. I think he's out of touch with most of the community. But he's intelligent and ambitious, and he's working on securing the organisation's funding. I don't expect him to leave soon, which means I can try to build on stability.

🟡 Referring autistic people to our social group.

https://twitter.com/ekverstania/status/1517269873323302912?t=xrXEXGQKK8tJgDE5qm_Bcw&s=19

🟡 Support in impressing upon the local autism researchers that they can't just study what they please. They have to ask us what we want. #WhoseAutismIsItAnyway #NothingAboutUsWithoutUs