Thank you so much to the Autistic Self Advocacy Network for honoring me and my work with the Academic Autism Spectrum Partnership in Research and Education. But thank you even more for being part of that “partnership” piece of AASPIRE. Our histories have grown up together over the past decade and a half: ASAN’s, AASPIRE’s, and my own as an Autistic self-advocate and a scientist.
I first learned about ASAN in 2006. I was a graduate student, looking toward a career not in autism research but in building robot brains. I was new to the neurodiversity movement, though not new to fighting systemic oppression, having cut my teeth in the 80’s and 90’s LGBTQ+ movement. Self-advocacy–and troublemaking for civil rights–has long been my bag.
At that time, inclusive autism research was rare, and when it was being done at all it was not through a formal community-academic collaboration, despite such models having been used with other marginalized communities for decades. At that time, even getting outsiders to believe there was an Autistic community at all was near-impossible. We were constantly confronting research studies that stigmatized us in their research aims, language, or interpretation; were inaccurate due to lack of understanding about the autistic population; or were even downright harmful to us in their scope or intended outcomes. Billions of dollars were going to autism research, but no one had asked us–actually autistic people–what questions we most urgently needed science to answer.
To address these issues, I co-founded AASPIRE with my now long-time friend and collaborator Christina Nicolaidis, a physician-researcher with a focus in health equity. Our aim, then as now, was to to use a community-based participatory research approach with the Autistic community to address issues of systemic oppression within autism research, and to conduct studies that actually autistic people wanted done. But to meet our aim we needed more connection with the Autistic community than my lone self. ASAN was, back then, the only U.S.-based self-advocate led organization with a policy and service focus that could provide synergy with our science. I met up with Ari and Scott in person for the first time to deliver AASPIRE’s first-ever scientific research presentation. We didn’t even have a completed research project yet, and ended up doing an awkward talk on autistic community engagement. But we got a lot of scientists thinking for the first time about the need to include us in their work. It was the beginning of a partnership that persists today.
ASAN and AASPIRE have grown up together on roads both parallel and intersecting within the broader context of the autistic rights movement. In the past decade and a half we have seen–and I’d like to think we have also played a key role in–the move toward actually autistic inclusion in major federal research policy, such as obtaining voice on the IACC; the move away from framing autism through the lens of deficiency, sterotypes, and I AM AUTISM I EAT CHILDREN “awareness” campaigns; and the move into an exciting frontier of new community-engaged and inclusive autism research groups spreading throughout the world. AASPIRE remains the first and longest running academic-autistic community based participatory research collaborative, having obtained multiple grants over twelve years to address healthcare, employment, and mental health, along with our work promoting inclusive research methods. Last year, Christina and I were able to launch a new academic journal, Autism in Adulthood, which includes actually autistic people as contributors, reviewers, and editorial board members. I, as an individual, have gone from an autistic self-advocate non-scientist to the first openly autistic National Institutes of Health funded autism services researcher. I am so proud of my team in an emotional space beyond words, for all we have done together, from our big, obvious accomplishments like publications and awards, to the narrow, dark spaces of mutual empowerment and support.
AASPIRE’s work would not have been possible without the ongoing pressure of self-advocacy organizations like ASAN, who help us shift policy and society to make way for our research to be funded. And we, too, from the science side, offer self-advocates and community organizations more powerful knowledge to make their advocacy stronger. We are a feedback loop; a virtuous cycle.
We’ve all come so far since 2006. We’ve done tremendous work shifting ableist systems of oppression. We have a decade plus of tangible evidence that our fight for equity and inclusion is one that, over time, we can win. We have fought for power, and we have gained power. Let us continue to grow and use our power for benefit of our community.
I know I tend to talk big and systems-y. I’m a systems scientist, after all, I can’t help it. But I also confess to feeling awkward focusing on myself when nothing like what I have achieved can happen in isolation. Stubborn punk-rock leadership helps, sure, but ultimately we are all interdependent on each other. It is only together that we can truly change the world.
Thank you again for honoring me and AASPIRE’s work with this award. I’m very excited for our next decade and a half together!