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For those of you with an interest, I'll be giving a webinar tomorrow via @MCPHS called "Operationalizing Neurodiversity: How Should the Neurodiversity Movement Shift Autism Service-Provision and Research?" https://mcphs.zoom.us/meeting/register/tJMvceisrD8vHNYWj9a308GL8pTuKO-6assO
The topic is one that's long been near and dear to my heart - what are the practical implications of neurodiversity ideas to autism research and service-provision? What would an ethical approach to autism research and service-provision actually look like? https://twitter.com/aneeman/status/1328872671594098694
Sometimes the #neurodiversity movement can get too caught up in theory or language and not give concrete enough direction to the rest of the autism world about the specifics of how we actually want them to change. https://twitter.com/aneeman/status/1328873037421293569
Lately, I've been examining some of the common outcome measures used in autism research with an eye towards how they could evolve to better align with our values. https://twitter.com/aneeman/status/1328873037421293569
Outcome measurement is one of the most important questions in research and service-provision. If you measure success based on prioritizing normal appearance, providers will prioritize normal appearance. https://twitter.com/aneeman/status/1328873495019855879
If, on the other hand, you try and build outcome measures that focus on outcomes autistic people and our families actually care about - like communication, quality of life, health and so on - we can actually shift provider practices on the ground. https://twitter.com/aneeman/status/1328873733826764805
The neurodiversity movement's growing relevance in autism politics hasn't been matched with a comparable effort to change service-provision practices. I think it's time that changed. https://twitter.com/aneeman/status/1328873959455154182
One of the great things about looking at outcome measures is that it can mitigate some of the tensions between many non-autistic parents and autistic activists about neurodiversity. https://twitter.com/aneeman/status/1328874212703002637
There are lots of controversial aspects to neurodiversity, like shifting the autism research agenda and critiquing the heavy promotion of ABA. We should keep working on those policy priorities... https://twitter.com/aneeman/status/1328875011340431367
..but neurodiversity's critics are often very successful at misrepresenting the movement as opposing things we actually support, like improving communication and reducing self-injury, in part because of how controversial those topics are. https://twitter.com/aneeman/status/1328875011340431367
Outcome measurement is a very concrete area of work. A measure either scores for "lack of eye contact" or it doesn't. We can be very specific about wanting to move away from promoting indistinguishability while still supporting improving quality of life. https://twitter.com/aneeman/status/1328876410325315584
Neurodiversity has plenty of bad faith critics, and those differences won't matter very much to them. But there are also many families who share our underlying values and will respond well to efforts to shift autism services towards things they care about. https://twitter.com/aneeman/status/1328876835879444480
The average family member isn't interested in their child making eye contact or not stimming. Instead, they want them to be able to communicate and live independently. Outcome measurement is where the rubber meets the road to stop conflating the two. https://twitter.com/aneeman/status/1328876835879444480
And for the many providers and researchers who are interested in being allies to the #ActuallyAutistic community, getting more sophisticated about what neurodiversity actually means will help them work to change their fields for the better. https://twitter.com/aneeman/status/1328877134555787266
I hope you'll join me for what I think will be an intriguing conversation tomorrow at 1 PM EST. And thanks again to @MCPHS for hosting! https://mcphs.zoom.us/meeting/register/tJMvceisrD8vHNYWj9a308GL8pTuKO-6assO
