Ways to make autism research more diverse and inclusive

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ASPartOfMe
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14 Jun 2022, 11:36 am

Spectrum News
Lydia Hickman is a graduate student in Jennifer Cook’s lab at the University of Birmingham in the United Kingdom, and co-founder of the U21 Autism Research Network

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In 2010, psychologists Joseph Henrich, Steven Heine and Ara Norenzayan famously noted that most participants in behavioral studies are ‘WEIRD’: They hail from Western, Educated, Industrialized, Rich and Democratic societies. More than a decade later, this is still a huge problem in autism research— at least if we want our findings to apply to the full range of people within the autism community.

To address the lack of diversity and inclusion in autism research, in 2020 my colleagues and I formed the U21 Autism Research Network, a collaboration among seven research groups around the world. Last year, we hosted an international panel discussion with autistic people and autism researchers, who highlighted ways to improve diversity and inclusion in the field.

There were several top takeaways from that meeting. Among them: Scientists need to focus on the importance of representative study samples and of engaging with a diversity of autism community members, who may have a range of traits and experiences. The meeting also generated some practical tips for engaging with communities that are underrepresented in research, and for using ‘autism consultancy groups.’

At a minimum, study investigators should be open and honest about the true diversity within their samples. By reporting information such as sex, gender, ethnicity and verbal ability, and reflecting on limitations inherent within the diversity of their participant groups, investigators make it easier for other scientists to infer the generalizability of their findings.

One underrepresented group in autism research is autistic people who speak few or no words. This group makes up 25 to 35 percent of the autism community, but few studies include them.

It is not enough to simply include more non-speaking people in research studies; we must also take steps to make it possible for these people to communicate their responses. Without considering and addressing such barriers, researchers may incorrectly attribute a lack of response to behavioral or cognitive differences. We must think carefully about how to adapt current research protocols to make experimental setups accessible to everyone and enable a diverse range of people to participate.

We must also recognize the considerable heterogeneity within the autism community. Autism research will not advance by attempting to create an autistic ‘prototype,’ a model that can only fail to account for the differences among autistic people. Such labels are unhelpful for a community whose members have a broad spectrum of abilities and challenges.

And it is important that researchers not try to explain everything in one study, but instead acknowledge that not every autistic person experiences the world in the same way. Indeed, we must recognize the role that intersectionality plays in the lives of autistic people.

In recent years, a growing number of autism studies have been carried out by or in partnership with autistic people. One approach to such ‘participatory research’ involves the use of autism consultancy groups, in which members of the autism community provide feedback on the full research process, from initial ideas and methods to interpreting findings.

This shift has prompted the production of guidance for autism researchers, and there are many examples of success stories stemming from community involvement. However, there is still room for improvement.

As one of our panel discussants put it: “The media say that ethnic communities are hard to reach, but they’re only hard to reach if you’re not looking for us.”

Simply reaching out to such communities is not enough, however. Scientists must also consider the barriers to participation and acknowledge that not everyone has the same opportunities to engage.

Finally, a wider range of people can participate if researchers are flexible about ways to contribute to an activity.


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Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity

“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman


autisticelders
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17 Jun 2022, 6:43 am

this is good input, thank you


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ASPartOfMe
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17 Jun 2022, 8:40 pm

autisticelders wrote:
this is good input, thank you

You are welcome.


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Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity

“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman