This blog is the second part of a series based on our April 2022 webinar about addressing ableism in research and policy, featuring Kristen Bottema-Beutel, Steven Kapp, Jessica Nina Lester, Noah Sasson, and Brittany Hand. We present insights from our panelists about how to address ableism in research and policy and why this is important.
What do you think are the most important changes that you’ve seen in our world that might be reflected in the language we use to talk about autistic people?
Kristen Bottema-Beutel, lead author of the article this webinar focused on, highlighted how autistic people are increasingly visible in the research planning and implementation process. “We have more openly autistic researchers in the field, who are acknowledged as such.” In earlier research, “Autistic people were the object of research.. And were not considered to be participants.” More researchers are now looking to autistic people to help drive changes in the way that we think about autism and the best ways to support autistic people. Additionally, more platforms exist for autistic people to evaluate academic work.
Maybe we didn’t start our research careers with autistic people having a say in how we disseminate our research, but now they do, and that has been tremendously influential…. I think people are now thinking of their [research] work as part of a conversation with autistic people, not just about autistic people.
For people who might be hesitant to venture into using first person language like “autistic person,” what are some of the first steps people can take?
Brittany Hand pointed to her weekly journal club as a helpful way to facilitate this discussion. “We talk about the science, and we also talk about the language,” discussing language examples that worked well, or what you would do differently in your own paper.
Brittany noted, and several webinar participants underscored, that submitting manuscripts to journals that do not support identity first language can be challenging. “We will actually cite an article supporting where’re using identity first language and then provide a citation to provide a little bit of context in case the peer reviewer maybe isn’t familiar.”
Brittany expressed the importance of taking steps to change language.
Intentional language can change policy… It’s probably going to be sort of a bottom-up approach like you’re going to get people who just start using this language, who are able to explain their rationale for it, and then the policy will change, hopefully. Services also will be better informed by the voices of autistic individuals.
Tell us about how your research has changed over time.
Noah Sasson described the positive effects of a “confluence of increasingly interacting with autistic researchers and scholars.”
Stephen Kapp cautioned that in addition to including autistic researchers, it’s important to include “lay autistic people who are not academics who are not necessarily intending to go into academia.”
That’s helping to align the research with both research expertise which the academic team can bring and align that with community values that community partners may have. And, of course, there may be parents or other relatives or practitioners as relevant partners, too.
He added that, “Including autistic people challenges the research team to try to communicate its findings in accessible ways.”
Jessica Nina Lester described shifting the model for how we train social researchers, “Many of us as social science researchers are trained to be the expert in the room. When we think about the training itself, it’s really ‘putting on its head’ the notion of expertise and being really critical about the power differentials that always exist even if we’re doing participatory work.”
Help us understand neurodiversity versus difference versus disability.
Steven Kapp explained that neurodiversity is a concept, a framework about valuing neurocognitive differences in all people. But as a movement it’s about trying to advance the rights of and support people who have neurocognitive differences, including people with the highest support needs who public policy tends to prioritize.
Difference refers to the individuals and their profile of strengths and weaknesses and within person variability, such as being a concrete, literal thinker versus abstract, or sometimes both. Stephen questioned, “Who’s to say that one of those ways is better worse than another?”
Disability is about functional impairment and major activities of daily living and ways that society may contribute to these barriers via misunderstanding and lack of access. “It’s often unintentional, and it might be an interaction between the characteristics of the person and the environment…but it doesn’t only stem from neurodivergence itself, such as autism or intellectual disability.
Noah Sasson also discussed the importance of addressing the environment.
Addressing social systems and barriers – things like exclusion, stigma, bias, and encouraging social change and mutual understanding – could potentially be another avenue for improving outcomes for autistic people that doesn’t just place the burden on them to try to be ‘more normal.’
How can we be most sensitive to, or supportive of people who feel left out by the anti-ableism movement? How can we best represent an array of autistic experiences?
Steven Kapp first explained, “It’s always important to make sure that you understand autistic individuals’ preferences for how they would like to be identified.”
He then addressed the importance of anti-ableism for autistics with high support needs.
In terms of the goals of language and respect, it would be toward things that would ultimately try to help those with high support needs, such as living in the community with the support someone needs. And if we implement policies such as that, I think there would be a lot more relief for caregivers. I don’t think parents should have to care for someone throughout their lives, and of course their child may well outlive them…That’s what all of this is about… Everyone is equal, even if our abilities aren’t equal. We’re trying to have language that dignifies.
Eliminating ableism in research, policy, and practice will continue to be an iterative process. We will all need to work together, especially with autistic individuals, to examine our work, to make changes, and to grow. We look forward to you joining us on this journey.