Thread by @shannonrosa

Autism researchers and research funders: if you don’t listen to autistic community members and leaders about what #autistic people want investigated, you are not actually helping the autistic people you really, truly think you’re helping. This is going to be a thread. 1/

Autism research is mostly failing my teenage son and his autistic community. Saying something so forthright may seem harsh, but this is the Greta Thunberg era—and we’re now telling people what they need to hear, not what they want to hear. 2/

I've been going to autism science conferences & scrutinizing autism research for nearly a decade, & during this time most autism studies have remained mired in areas like causation—which does absolutely nothing to improve the lives of autistic people who are here already. 3/

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. 4/

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.

What is behind this research disproportionality? Well…

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Most orgs that pour money on autism research, such as Autism Speaks & The Simons Foundation 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. 6/

Per @JHMarble,
“In the US, a few wealthy funders and foundations dictate the direction of funding priorities. Their priorities are not the priorities of most parents. It’s why only 6% of funding goes to researching how to help us [autistic people and families].” 7/

@JHMarble This is why so many were upset re: the recent reauthorization of The Autism CARES Act, which funds autism research: Except for minor language changes, very little has changed since non-autistic autism lobbyists overrode autistic concerns and input about the Act in 2014. 8/

@JHMarble As autistic advocate Sara Luterman @slooterman noted:
“The Autism CARES Act is a $3.1 billion funding package that gives exactly zero dollars to any autistic-led groups or initiatives.” 9/

@JHMarble @slooterman A cynical person might say that the lopsidedness of autism research also happens because actually connecting with autistic people who have complex and diverse disabilities is challenging… 10/

@JHMarble @slooterman …and it’s much easier to do research that imparts the beneficent glow of working on behalf of disabled people without actually engaging them. 11/

@JHMarble @slooterman And even when research is promoted as helping autistic people, it largely does not do so in substantive ways. As science writer @ejwillingham notes, "In most human-related research, the goal is, one assumes, some benefit for the population being studied.” 12/

Autism research role models include @drdebah, who says, “Anyone performing human-participatory research should be engaging in praxis to better address community-defined needs and to better understand themselves as allies or preferably, accomplices.” 13/

@drdebah More @drdebah: "Without praxis, we are acting upon people and communities instead of acting in solidarity and in congress with them.” 14/

@drdebah And yes, besides @drdebah 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. 15/

@drdebah But in-touch autism researchers are the minority. Why do so many other well-meaning researchers work so hard on behalf of theoretical autistic people or early interventions, rather than the pressing needs of the majority of existing autistic people who are no longer children? 16/

Can we please start putting our research energies into where they are most needed, which is in helping people like my son and his autistic peers get the supports and services and education and communication systems and adaptive gear they need to live the best lives possible? 17/

Can you imagine how frustrated my otherwise happy & content minimally-speaking son has been, without a proper communication channel to express his thoughts and interests, because researchers can’t be bothered with addressing the diversity of autistic communication needs? 18/

What if his issue is actually a motor planning disability, and he doesn’t have intellectual disability? What if he has *both* disabilities? How would we know? Research rarely addresses these issues in ways that translate to real world differences. 19/

To make progress in the autism research areas that will benefit autistic people, *we need to listen to what autistic people themselves have to say about the goals and direction of autism research*. 20/

Every year at the meeting of the International Association for Autism Research (INSAR), autistic people and autism researchers (and many who are both) get together to discuss autism research priorities at the #AutINSAR event: thinkingautismguide.com/2019/05/autins… 21/

#AutINSAR topics include under-studied areas like co-occurring conditions, underserved populations, the trauma caused by normalization approaches like ABA, suicidality, autistic commonalities, and autistic inertia and how it manifests differently in different people. 22/

Yet, outside of the #AutINSAR event, these #autism research topics are rarely addressed. (And please note that no one in the AutINSAR discussions is ever interested in autism causation.) 23/

If autism research is to change for the better, we need to give more attention to organizations dedicated to autistic well being, like AASPIRE (Academic Autism Spectrum Partnership in Research and Education)… 24/

…and Shaping Autism Research UK's Starter Pack for Participatory Autism Research (involving autistic people in studies): shapingautismresearch.co.uk/post/163944360….

Other autism research organizations need to use these orgs as models. 25/

Research indicates that autistic brains exhibit more diversity than non-autistic brains. If autism research is going to address the needs of such a varied population, then it needs to branch out similarly, get real about what autistic ppl need, & humanize its priorities. 26/26