Monday, October 7, 2019

It’s Time For Autism Research To Do Better By Autistic People

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Photo: Charlene Croft | Creative Commons / Flickr
[image: hand of a person with light skin arranging long
red, green, and yellow construction blocks in a line.]
Shannon Des Roches Rosa
@shannonrosa

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.

I've been going to autism science conferences and 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 who are here already.

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, and largely neglects those like my son who have intellectual disability and/or communication disabilities.

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? Most organizations that pour money on autism research, such as Autism Speaks, The Simons Foundation, and The Autism Science 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. As Autistic advocate John Marble commented,
“When it comes to funding autism research and supports in the United States, 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].
This skew is also why so people many were disgruntled over the recent reauthorization of The Autism CARES Act, which funds government autism research: With the exception of minor language changes, very little has changed since non-autistic autism lobbyists overrode autistic concerns and input about the Act in 2014. As autistic advocate Sara Luterman noted:
“The Autism CARES Act is a $3.1 billion funding package that gives exactly zero dollars to any autistic-led groups or initiatives.”
And even when research is promoted as helping autistic people, it largely does not do so in substantive ways. Consider recent findings about new autism genes. We talked with science writer Emily Willingham, who said,
“The most interesting finding here is the associations they found for people who have epilepsy. That represents a medical need for targeting. They found no variants in the vast majority of this population, and almost never found shared variants between autistic siblings. If anything, that reinforces the huge genetic variability underlying the development of autism, highlighting yet again that autism arises largely from a mosaic of variants operating in a background of other physiological influences that result in the continuum of features among autistic people.  
"In most human-related research, the goal is, one assumes, some benefit for the population being studied. With the exception of some homing in on epilepsy-related findings, I don't see how studies like this benefit autistic people or how they ultimately will. They confirm that autism, like other neurobiological variants, is highly individualistic, with each feature expressed at different points along a continuum in different combinations in different people. Perhaps that takeaway might be helpful in some indirect way by confirming that although autistic people share the features that make them autistic, how they express each of them is highly individual. Otherwise, I don't see much here that's helpful for the population that's in focus.“
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, and it’s much easier to do research that imparts the beneficent glow of working on behalf disabled people without actually engaging them.

That part of this imbalance has to end, and I’m not the only one who feels this way. In discussing my concerns with researcher Dr. Deb Karhson—who is also the sibling of a high-support autistic adult—she remarked,
“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. Without praxis, we are acting upon people and communities instead of acting in solidarity and in congress with them.”
And yes, besides Dr. Karhson, 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! But these in-touch researchers are the minority, and I cannot understand why so many other well-meaning researchers work so hard on behalf of theoretical autistic people or on early interventions, rather than on the pressing and under-addressed needs of that majority of existing autistic people who are no longer small children.

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 get the supports and services and education and communication systems and adaptive gear they need to live the best lives possible? Can you imagine how frustrated my otherwise happy and content minimally-speaking son has been, spending his entire life without a proper communication channel to express his thoughts and interests because the research that would lead to real-world progress in addressing the diversity of autistic communication needs isn't fully developed? 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.

To make progress, we need to listen to what autistic people themselves have to say about the goals and direction of autism research. 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. 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. Yet these topics are rarely addressed. (And please note that no one in the AutINSAR discussions is ever interested in autism causation.)

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), and Shaping Autism Research UK's Starter Pack for Participatory Autism Research (involving autistic people in studies). Other autism research organizations need to use these orgs as models.

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