Autism research is mostly failing my teenage son & his autistic community. Saying something so forthright may seem harsh, but this is the Greta Thunberg era—& we’re now telling people what they need to hear, not what they want to hear.
Saddle up, this is going to be a thread. 1/
Saddle up, this is going to be a thread. 1/
I've been going to autism science conferences & scrutinizing #autism research for nearly a decade, and during this time most autism studies have remained mired in areas like causation—a pursuit that does absolutely nothing to improve the lives of autistic people here already. 2/
Even more frustratingly, when research does address the needs of existing autistic people it does so with the goal of "intervention," rather than focusing on quality of life, & largely neglects those like my son who have intellectual disability &/or communication disabilities. 3/
My son is here now. I want autism research to focus on giving him the best life possible, not on trying to erase him, or change him into a non-autistic person. #neurodiversity 4/
What is behind this research disproportionality? Most orgs that pour money on autism research are neither autistic-led nor -informed, and frame autism as a problem to be eradicated rather than considering how autistic people and their families can live the best lives possible. 5/
A cynical person might say this lopsidedness happens because actually connecting with #autistic ppl who have complex disabilities is challenging, & it’s easier to do research that imparts the beneficent glow of working on behalf of disabled ppl without actually engaging them. 6/
And yes, there are many other truly wonderful autism researchers—many of whom are autistic themselves—doing useful and good work that will benefit the entire autistic community. We interview wonderful autism researchers all the time at @thinkingautism. 7/
But in-touch researchers are the minority, & I cannot understand why so many well-meaning folk work so hard on behalf of theoretical autistic ppl or early interventions, rather than on the pressing needs of the majority of existing autistic people who are no longer children. 8/
Can we please start putting our research energies into where they are most needed, which is in helping people like my son and his fellow autistics get the supports and services and education and communication systems and adaptive gear they need to live the best lives possible? 9/
Can you imagine how frustrated my minimally-speaking son has been, without a proper communication channel to express his thoughts and interests, due to a lack of research that would lead to real progress in addressing the diversity of autistic communication needs? 10/
What if my #autistic son’s issue is actually a motor planning disability, and he doesn’t have intellectual disability? What if he has both disabilities? How would we know? Autism Research rarely addresses these issues in ways that translate to real world differences. 11/
To make progress, we need to listen to what autistic people themselves have to say. Every year at the meeting of the International Association for Autism Research, autistic people & autism researchers (many are both) discuss autism research priorities at the #AutINSAR event. 12/
I’m really sad that there won’t be an #AutINSAR autism research discussion this year—@AutismINSAR’s 2020 meeting next week was of course canceled. But you can read what autistic people & autism researchers discussed at AutINSAR 2019:
thinkingautismguide.com/2019/05/autins… #Neurodiversity 13/
thinkingautismguide.com/2019/05/autins… #Neurodiversity 13/
(And please note that no one in the #AutINSAR discussions is ever interested in autism causation.) 15/
If autism research is to change for the better, we need more orgs dedicated to autistic well being, like AASPIRE, and Shaping Autism Research UK's Starter Pack for Participatory Autism Research. Other #autism research organizations need to use these orgs as models. 16/
