“Autism research is in crisis”: A Mixed Method Study of Researcher’s Constructions of Autistic People and Autism Research

A house made of sand collapsing under its roof

autistic people disrupt research agendas.

@DrMBotha

This new research investigates ableist framing and language in autism research, of which there is an abundance.

While not all autism research is ableism, autism researchers can be ableist, including by talking about autistic people in sub-human terms (dehumanization), treating autistic people like objects (objectification), and making othering statements which set autistic people apart from non-autistic people, and below in status (stigmatization).

Using medicalized narratives of autism predicted higher odds of ableist cues compared to employing social model or neutral embodiment narratives. Greater inclusion of autistic people in research predicted significantly lower odds of ableist cues, while controlling for other contact with autistic people and career length. Next, we used reflexive thematic analysis to analyze researcher’s perceptions of autistic people and autism research. Narratives reflected core ideological disagreements of the field, such as whether researchers consider autism to be an intrinsic barrier to a good life, and whether researchers prioritize research which tackles “autism” versus barriers to societal inclusion for autistic people. Instrumentality (a form of objectification) was key to whether researchers considered a person to have social value with emphasis revolving around intellectual ability and independence. Lastly, language seemed to act as a tool of normalization of violence. Researchers relied on an amorphous idea of “autism” when talking about prevention or eradication, potentially because it sounds more palatable than talking about preventing “autistic people,” despite autism only existing within the context of autistic people.

We aimed to understand and evaluate autism researchers’ narratives and language use in describing autistic people and their views on autism research. In our sample, most participants held a medical model narrative, with fewer subscribing to a social model position, although around a third held a more neutral perspective which defined autistic as a way of being. We also identified that around 60% expressed cues of ableism which we conceptualized as dehumanization, objectification, and stigmatization. In terms of what predicted these ableist cues, social model and neutral-embodiment narratives and a higher degree of participatory research predicted significantly lower odds of expressing cues of ableism, above and beyond length of research career, and familial and non-familial contact with autistic people. We used reflexive thematic analysis to further examine the narratives and views being held, and identified six themes which captured an overall sense of disparity and disagreement amongst autism researchers. This analysis highlighted not only the potential need for conceptual reconsideration of “autism” but the fundamental need for change in the way in which autism researchers talk about autistic people and do autism research.

Frontiers | “Autism research is in crisis”: A mixed method study of researcher’s constructions of autistic people and autism research

The “Change Your Language” section of our “Facts, Fire, and Feels: Research-Storytelling from the Edges” page calls out this ableist language. We added the quote above to the section.

“Autism research is in crisis. Non-autistic people/researchers who have dedicated decades to studying autism are being pushed out of the field” (ID135).

Frontiers | “Autism research is in crisis”: A mixed method study of researcher’s constructions of autistic people and autism research

Non-autistic researchers have built a foundation of sand, and autistic people are calling it out. That’s why autism research is in crisis.

Autism research is incredibly flawed in an enormous number of ways. One example of how, is the fact that the sum total of all knowledge of Autism in academia is based on the work of two incredibly flawed men, both with incredibly flawed ideas and practice from the 1940s. Everything we know professionally and societally about Autism is underpinned by their work. As I’ve said so many times in talks and trainings the whole of Autism research is built on a foundation of sand.

Autistic Masking: Kieran Rose a new Academic Paper

The whole of Autism research is built on a foundation of sand.

Autistic Masking: Kieran Rose a new Academic Paper

Our four part series on the state of autism research goes into detail.

Hate speech towards autistic people ought to be prevented.

jon adams on Twitter

Here’s a helpful summary thread from one of the authors of “Frontiers | “Autism research is in crisis”: A mixed method study of researcher’s constructions of autistic people and autism research“.

✨NEW PAPER ALERT✨
“Autism research is in crisis”: A mixed method study of researcher’s constructions of autistic people and autism research – by me and Eiliidh Cage

Buckle up for a long(ish) thread about how autistic people disrupt research agendas! 1/

https://www.frontiersin.org/articles/10.3389/fpsyg.2022.1050897/full

We wanted to understand ableism in autism research: dehumanization, objectification, & stigma of autistic people by researchers (empirically). From literature its pretty clear that researchers can have negative attitudes towards autistic people but few have studied this 2/

This is a mixed-method study meaning that we used both quantitative (numbers) & qualitative elements (narrative) to understand this ableism towards autistic people. We used free-text questions to ellicit naturalistic responses from researchers about autism and autistic people 3/

We did this, because most researchers would recognise an ableism scale and demand characteristics and social desirability might shape their responses to be more positive than their attitudes towards autistic people generally are 4/

Plus, stigma scales can often perpetuate the same ableism it is hoping to measure. By using free text responses, we could more accurately (not perfectly) capture genuine narratives. Social desirability may still play a role and in some cases it was more obvious it had 5/

We also asked about how long people had been doing autism research, about both familial and non-familial contact with autistic people, and about how much researchers involved autistic people in their work – from not at all to full community led or participatory research 6/

We hand coded the open text responses for the type of narrative being used by researchers (medical, social, or what we term neutral embodiment) & also for the presence of cues of ableism: cues where researchers dehumanized, objectified, or stigmatized autistic people 7/

To put it politely – the data was a shit show. We had been worried that researchers might be influenced by social desirability & while it influenced it, people expressed similar views to the wider literature about autsitic people, & coding the data was brutal, slow & harrowing 8/

60% of responses contained dehumanizing, objectifying and stigmatizing attitudes towards autistic people – often portraying autistic people as lacking in complex emotions, agency, uniquely human-traits, community, identity, culture, or warmth. It was stomach churning to read 9/

We then used what is called logistic regression to see whether narrative and degree of autistic involvement in research could predict the presence of these cues of ableism – all the while controlling for career length and other contact 10/

snapshot of results: while controlling for career length, and other contact with autistic people (familial & non-familial), medicalized approachs to autism predicts a significantly higher odds of ableism, while involving autistic people more in research predicts lower odds 11/

This is all correlational and not causal though! It could mean that the more you appreciate autistic people, the more you involve them in research in the first place, or, the more you involve them in research, the more you appreciate them – or both! 12/

To be willing to collaborate with autistic people would mean having to consider them as as having specific capabilities or traits from the outset, and actually interacting with autistic people might also challenge the internalised preconcieved notions people hold of autism 13/

Then, to fully understand the qualitative side, we did a reflexive thematic analysis – the results are reaaaaallllly long and can't be summarised in a tweet thread, but I'll point out some complementary bits to quantitative analysis 14/

In terms of objectification: autistic people were given social value via percieved utility to society. This is a fancy way of saying that a researchers often thought of autistic people as having similar social value to autistic people if they could picture having a use for us 15/

This is a form of objectification that rests on instrumentality. If we (autistic people) could be used as a means to an end we were considered valuable to society. If not, then its no real loss. This links with neurodiversity-lite where people focus on economic utility 16/

Quality of life is a fluffy concept until you get into detail- most researchers talked about it, but its abstract until operationalisation. For some autism IS the barrier to a good life, for others it is hostile society. How you get to the good life is completely different. 17/

Researchers distanced themselves from less palatable sounding research goals by removing the autism from the individual. By talking about abstract autism, it seemed researchers could paint the goals as not affecting humans, and as more reasonable 18/

This links to quality of life where you picture autism to be the ultimate barrier to a good life. By abstracting autism as not inherently about people, you can discuss the eradication of autism without dealing with the human consequences 19/

There are structural issues in autism research including publish or perish, siloing of various fields, and a lack of wider engagement with progressive theory into experimental fields which compound this ableism because it makes it leaves older research harder to challenge 20/

Some people see participatory autism research as a path forward, as progress & as a social & research good. Others, genuinely, see it as a threat & worry that autistic people are somehow pushing non-autistic people out of the field (despite dedicating their lives to "autism") 21/

At the end of the paper we talk about what these results mean: is it good to involve autistic people in research? Its complicated. Its fantastic to see that involving autistic people relates to less ableism, but research is often hostile to autistic people and is damaging 22/

Autistic people should be seen for more than our utility to researchers or ability to positively shape autism research because often we get damaged and hurt in the process (which a lot of autistic people have written about). Safe and healthy participation is key. 23/

Plus, it shouldn't always be on autistic people to clean up the messy legacy of autism research which has perpetuated a lot of violence against autistic people. Research also needs to (to be very, very frank), get its shit together. We need to do better 24/

There are positives – not everyone was ableist, less time in autism research predicted lower cues of ableism (suggesting maybe progress?), there were some positive attitudes towards autistic people, participatory research, and change. But we can't ignore the systemic ableism 25/

My research on ableism in autism research began during my @ESRC @SocSciScotland Postdoctoral fellowship @StirUni_Psych so thanks needs to go to their funding and the time it gave me to launch this line of enquiry. 26/

This also would not have been possible without funding from the @LeverhulmeTrust as my early career fellowship currently focuses on how knowledge in autism research is fragile and shaped by dehumanization, objectification and stigma! 27/27

Originally tweeted by Monique Botha is actually they/them 🤷🏻‍♀️ (@DrMBotha) on November 28, 2022.

I would like to honour all the autistic people who survive the care system somehow.
All those who survive extreme ‘therapy’.

All those who are brought to their knees, reading hellish descriptions of their loved people.

And all who did not survive this onslaught.

ANN MEMMOTT PGC🌈 ON TWITTER

Published by Ryan Boren

#ActuallyAutistic retired technologist turned wannabe-sociologist. Equity literate education, respectfully connected parenting, passion-based learning, indie ed-tech, neurodiversity, social model of disability, design for real life, inclusion, open web, open source. he/they

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