This blog presents insights from a webinar based on “Avoiding Ableist Language: Suggestions for Autism Researchers” by Kristen Bottema-Beutel, Steven Kapp, Jessica Nina Lester, Noah Sasson, and Brittany Hand. 

 On April 13, 2022, the Policy Impact Project hosted a webinar on the how to identify and address ableism in research and policy. Kristen Bottema-Beutel, started by explaining ableism. 

T.L. Lewis, who is a disabled educator and lawyer, describes ableism as a system that places value on the people’s bodies and minds based on societal-constructed ideas of normality, intelligence, excellence, desirability, and productivity. These constructed ideas are deeply rooted in anti-blackness, eugenics, misogyny, colonialism, imperialism, and capitalism. This form of systemic oppression leads to people in society determining who is valuable and worthy based on a person’s language, appearance, religion, and or their ability to satisfactorily produce and reproduce, excel and behave.  

Some of the ways that ableism can manifest for autistic people is in outcomes like underemployment, mental health disparities, victimization, and suicidality. 

Ableism is highly apparent in the autism literature. Leo Kanner, a clinical psychiatrist who was among the first to describe autism, said, “One way to look at the job of helping autistic kids is to see it as a matter of constructing a person. You have the raw materials, but you have to build the person.” Historical characterization of autistic people underlies the current treatment of autistic people in research. 

Jessica Nina Lester discussed how language continually changes, reflecting the world around us. 

The social world that is produced through language use is always telling us something about society, about what society has come to position as normal or abnormal, or what society positions as acceptable identities or otherwise. 

Language preferences change because language is being constantly imbued with new ideologies. And so, we too must commit to changing and being ever reflective about how the language choices that we are taking up, that we’re using in our writing and our speaking, hold real consequences for people and people’s lives and communities. 

Steven Kapp explained “deficits versus differences” in our thinking about autism. 

Autistic people have led the change from a deficit to a difference narrative and the framing of autism. Examples include shifting from person-first language (like person with autism) to identity-first language (like autistic person). Although, not everyone has these individual preferences, and we should respect any individual’s preferences.  

It’s not just the language used to refer to autism, but also the symbols used. People felt that the puzzle pieces [that some organizations and journals were using] are offensive and suggest autistic people are broken, or that non autistic people find us puzzling. 

…There’s a focus on deficits, which is defined as some deviation from typicality, and that affects how researchers conceptualize autism and what they investigate as the mechanisms of social disability, with an assumption that autistic differences are the uni-directional cause of social disability and autism. …But differences don’t necessarily have to be conceptualized as deficits. 

Noah Sasson further explained the problem of deficit framing. 

A deficit model inevitably leads to assumptions that any difference found in autism, regardless of direction, must be incorrect, because it deviates from normality even when it is superior performance on a task. It can be seen as a deficit if the norm is always assumed to be the right way of being. 

Social disability, though, alternatively could be viewed as emerging at the intersection of the person and the environment. It’s not solely ‘of the person’ or ‘of the environment’ but ‘at the intersection.’ It’s a misalignment between the person’s characteristics and environmental demands that ultimately can produce disability. To this point, though, autism research and treatment has almost exclusively been focused on the person. 

One result of this framing is that autistic people are defined by perceived deficits, and are seen as incomplete or broken, or in need of changing. And these messages, I think, can have real consequences for autistic people, not just in how they’re viewed and treated by others, but also and how they view themselves. 

Sasson went on to give an example of an alternative approach to research. 

Research that my lab is conducting (and others) is showing that that things like partner compatibility, rather than individual traits, are better predictors of effective social communication and interaction and rapport. For instance, we have found that autistic people often have enhanced social experiences with other autistic people, which is not what you would predict from a deficit model…The deficit that we’re finding exists between autistic and non-autistic people, not OF autistic people themselves. 

Brittany Hand then highlighted a few examples of alternative language choices for researchers who wish to address ableism in their own language. 

Instead of maybe saying special interests, a potential alternative could be a focused or intense interest. 

Instead of saying challenging or destructive or problem behaviors, a potential alternative is to describe the actual behavior that you’re seeing. 

Instead of using high or low functioning labels, you can describe specific strength and needs, and acknowledge that at the level of support that individuals need likely varies across domains and is context- dependent  

Instead of saying healthy controls, or normative sample, a potential alternative term could be a population comparison group or a non-autistic group. 

In regard to person-first versus identify-first language, she said, “Obviously we want to be respectful of what you know that individual’s preferences are, and so it’s important that we kind of mirror their language.” 

Hand referred to a table in the article with additional language recommendations but cautioned that ableism is not just about language.  

This isn’t just about swapping one term for another term. The goal is to prompt self-reflection and to examine our own language. If we don’t address our own ableism, and if we just switch out one term for another term, these underlying ableist ideologies remain.  

Without self-reflection, “Ultimately, then we’re still upholding and perpetuating ableism through our research.” 

 

Stay tuned for Part 2 of this blog on Addressing Ableism.