The Words Researchers Use to Talk About Autism Aren’t Just Hurtful, They Also Hold Back Scientific Progress
To do science, we need precise, objective definitions, not insults and euphemisms
I’ve been participating in the broad autism community, following and writing about autism research, for thirteen years. For even longer than that, people who care about autism research have debated how to discuss autism in a way that doesn’t harm autistic people — and whether to bother. In the past couple months, non-autistic researchers stirred up the debate again, and some complained that autistic people’s criticism of the field’s word choices was cramping their style. [1] Until now, I’ve had nothing to add to this ancient, repetitive, exhausting debate that many autistic people haven’t already said.
However, today I skimmed an article in Science and read the following quote by Alison Singer, who is still president of the Autism Science Foundation (ASF):
“If you can’t use words like ‘challenging behaviors’ or ‘severe disorder’ or ‘symptoms’ or ‘comorbid disorder,’ then how are you supposed to study those things?”
I don’t expect to hear anything I’d consider kind or ethical from Alison Singer. This is the woman recorded on video in 2006 saying, in front of her (now adult) autistic daughter, that she’d wanted to kill both of them by driving them into a lake, and refrained only because she had another non-autistic daughter. [2] However, the sheer inaccuracy and scientific illiteracy of Singer’s words demands a response.
Singer claims that — regardless of whether the words she favors hurt and stigmatize autistic people — they are necessary for conducting research.
In fact, I would argue, the opposite is true. The terms she prefers may actually hold researchers back.
What’s at Stake in this Battle of Words?
For people who aren’t personally affected, it’s easy to say, “who cares? It’s just words.”
However, as an article in the American Medical Association (AMA) Journal of Ethics notes, the power of medical authorities to decide “what we name diseased, what we name normal, what we consider aesthetic, and what we consider aberrational” determines “how we treat people and what we treat.”
To use an example less controversial than autism: is acne, the presence of bumps on the skin often combined with irritation, an aesthetically unpleasant but harmless state? Or, is it a medical condition, to be diagnosed by specialists and treated with drugs and other products?
Alison Singer seems to object to the possibility that society as a whole might view autism as a “disability” instead of a “disease” or “disorder.” A disease or disorder requires medical research, treatment, medication, and prevention; a disability requires specialized educational methods, assistive technology, modified work environments, protective laws, and changes in social norms.
Alison Singer, who experienced having an autistic child as suffering, may fear that society won’t take her pain seriously if it perceives her child as having a disability instead of a disease. She may also fear that other parents with children like hers will not receive access to necessary resources.
In fact, disabilities, like diseases, require resources — just ones of a different kind. Furthermore, autistic activists spend immense time, effort, and money campaigning for these to be more widely available. [3]
It’s easier for society to see the need to put resources into a terrifying “epidemic” than into the long term well being of disabled people, who are often seen as less valuable. Therefore, Singer has long made the Faustian bargain of presenting autism as a public health scourge to obtain resources — never mind the costs to this population’s mental health and well being.
Singer does not seem to understand how children like hers can benefit from a world where autism isn’t considered a medical problem.
What’s Not at Stake
No one wants to prevent research on autism characteristics, co-occurring diagnoses, or needs.
“I don’t get why we can’t have common ground,” says [autism researcher] Bottema-Beutel, who is nonautistic. “I don’t think that anyone who is saying we should avoid dehumanizing language is saying we should avoid accurately describing people and what they need.”
There are people who object to at least some research about the genetics of autism, fearing that discovering genetic causes will lead to parents systematically aborting babies with these genes, as they do with Down syndrome. This is the only sort of research I’ve ever seen anyone argue for reducing or preventing.
Objection 1: Synonyms Exist
“Comorbid(ity)”
Autistic people are not the first to object to terms like “comorbid disorder” to express the idea that one person has multiple diagnoses. The term “comorbid” contains the word “morbid,” which has unpleasant, often inaccurate connotations of deadliness. To avoid misunderstandings as well as hurt feelings, I’ve used “co-occurring” instead for years.
If Alison Singer looks at the books and blogs of the autistic advocates she opposes, she’ll notice that they ask all sorts of questions about co-occurring conditions, including:
What is the relationship between autism and ADHD? Why do they often co-occur?
Why are the rates of anxiety and depression so high among autistic people (affecting over half of this population)?
Are the rates of Ehlers Dahnlos syndrome, immune disorders, digestive conditions, and conditions involving chronic pain or fatigue, higher among autistic people than the general population? If so, why?
These questions are clearly relevant to the health and well being of autistic people. They can also be answered through scientific study, because:
They are precise, specifying co-occurring conditions to study and often, outcome measures.
They can often be framed as yes/no questions — an experimental hypothesis vs a null hypothesis.
“Symptoms”
Less negative synonyms for “symptoms” include “defining” “traits,” “qualities,” or “characteristics.” I use these myself.
An alternative to “disorder” or “disease” is “condition,” which implies any state of health, whether good, bad or neutral. For example, pregnancy is a condition. The AMA recommends using “condition” “in place of disease or disorder when a value-neutral term is desired.” Perhaps for this reason, some British researchers use the term “Autism Spectrum Condition” or ASC.
“Challenging Behavior”
If you ask a random person without autistic family or friends what “challenging behavior” means, they’d probably have no idea. They might guess it means what it sounds like: a child’s behavior that annoys or causes problems for parents and teachers. They might imagine whining, tantrums, or refusing to do homework or share toys. An uninformed person recognizes what Singer does not: “challenging behavior” is vague. I’ll explain why that matters later.
People like Alison Singer actually have specific behavior in mind, typically meltdowns or self injury. In the autism world, “challenging behavior” is a euphemism that neurotypical authority figures use to talk about behavior they judge to be disruptive to ongoing activities and hard to manage; unsafe for the autistic person and others nearby; or both.
It’s not hard to come up with a more specific description of behavior one might find distressing. Concerned about meltdowns? Say meltdowns. Considered about self injury? Call it self injury. Or, if you must, do what some autism researchers do and call it self injurious behavior or SIBs.
Now, anyone can know what you’re talking about.
“Severe” Autism
People who talk about “severe” autism usually have in mind specific people they know, who have characteristics like these:
large developmental delays and/or a low IQ;
cannot speak;
cannot live independently; need constant supervision to keep them and others safe;
frequent meltdowns and self injury; or, simply,
their autism is extremely obvious and can’t be hidden, no matter how much effort the person makes to look “normal.”
Do you want to understand what causes these characteristics, how to parent or teach people like this, how best to communicate with them, or what sort of services they need?
Great! By the way, so do many autistic activists who oppose terms like “severe autism.”
You can talk about a person who:
Has “developmental delays,” which may be “broad” or “general.”
Has “intellectual disability” or perhaps “IQ lower than x.”
“Cannot speak,” or is “nonspeaking.”
Has “limited independence,” “needs continual” or “full time supervision,” or “has high support needs.” May “live in a day center/rehab center/other institution” or may “need full-time special education.”
“Experiences meltdowns/self injury” or “has meltdowns,” “self injures.”
“Obviously autistic” or “could be recognized as autistic by the general public/people largely unfamiliar with autism”
Which words and phrases are in favor tend to change over time, but the basic principle remains consistent:
Be objective, not pejorative or euphemistic.
Objection 2: These Terms Are Not Precise or Scientific
“Severe” Autism
What exactly is the definition of “severe” autism? Each person with an opinion on the matter thinks they know what it is, but they give different definitions based on intuition or personal experience. It’s unscientific to define variables we study this way. Furthermore, most people’s concepts of “severe autism” are not precise enough to enable scientific study.
Consider the following questions. To count as “severe,” must a person be:
Very obviously autistic? (If so, how obviously, and to whom?)
Have a low IQ? (If so, what is the cutoff?)
Exhibit a developmental delay? (If so, how many years, or how much relative to age, in which and how many areas of development?)
Be unable to speak?
Lack independent living skills (if so, which and how many?) or require full time supervision?
Melt down, shut down, and/or self injure regularly? (Which and how often?)
Finally: who decides, and on what basis?
These are the questions we need to answer in order to define “severe” autism precisely enough to study it.
As autistic researcher Michelle Dawson explains regarding the synonym “low functioning,” researchers have not agreed on an answer to this question. Unless that changes, the term hinders progress.
“Challenging Behavior”
This term is intrinsically subjective. It describes the way behavior affects or is perceived by implied, but unspecified, authority figures. As such, it can’t and shouldn’t be a scientific term.
A typical parent or special education teacher might use “challenging behavior” to talk about a meltdown where a person physically harms someone else, such as by hitting or kicking. They might use it to describe self injurious behavior, such as banging one’s head into a wall. They might even use it to describe wandering off without an obvious warning or reason. [4] By contrast, the Judge Rotenberg Center, an infamous institution of last resort for parents of children with disabilities, punishes youth with electric shocks for such challenging behavior as swearing, failure to maintain a neat appearance, or getting out of their seats without permission.
Autism Researchers Should Be Specific and Objective
The words Alison Singer favors using are not only pejorative or euphemistic, they are also too vague to provide a basis for generalizable research. Thus, they are holding autism research back. They should be replaced by words that describe a person’s characteristics and behavior more objectively.
Autism researchers should follow the approach the American Medical Association (AMA) recommends for writing about race, ethnicity, and sexual orientation: be as specific as possible.
Not surprisingly, the AMA opposes terms that have negative connotations or evoke stereotypes. However, they also suggest avoiding broad terms such as “people of color” or “BIPOC” that are politically useful to some activists, but too vague to be useful to researchers. Similarly, the AMA favors using terms that describe the exact group being studied, such as “gay men” or “lesbian women” rather than “homosexual people” or “LGBTQ people” (or “LGBTQIA+” and similar umbrella words).
Monique Botha, an autistic researcher, sums it up best:
“Why not just be specific?” Botha asks. For example, if a study’s sample includes autistic people who are nonspeaking, have intellectual disability, and require supported living, just say that. Phrasing like this doesn’t minimize the very real challenges some autistic people experience — but it also doesn’t dehumanize them, Botha says. “Specificity is always going to be more rigorous and accurate than generalization.”
What words do you wish autism researchers would stop using? What replacements do you prefer? Comment and share your thoughts.
Footnotes
[1] Specifically, autism researcher David Amaral claims “we hear increasingly” that unidentified “autism researchers are declining opportunities to speak in public or are even considering leaving autism research altogether because they fear heckling or worse.” Of course, no one likes working in an environment where heckling is common and accepted, or wants to encourage such an environment to develop. However, Amaral — despite his attempts at even-handedness — also appears to imply that the silence or departure of these researchers is a loss to the field.
[2] To my knowledge, despite widespread protests, Alison Singer has never apologized for this statement or even publicly acknowledged it.
[3] I believe autistic advocates who oppose Singer have accomplished more than she and her colleagues have, with a much lower budget, while being taken less seriously.
[4] Autism specialists often use the jargon “elopement” to describe this sort of unexplained, unpredicted wandering. “Elopement” can lead worried loved ones to put autistic people on the missing persons list, often unnecessarily.
This is a super interesting piece. Thank you so much for sharing.