Preference of the terms "Autistic" or "Person with Autism"?

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Researchers from across the U21 Autism Research Network, led by a team at the University of Birmingham, carried out a survey of over 650 English-speaking autistic adults across the globe to explore their linguistic preferences. The findings, published in Autism Research, highlighted a number of clear recommendations. The paper represents the first global study into autistic language preferences.

Lead author, Connor Keating, from the University of Birmingham’s School of Psychology, said: “Although we found that some terms were more popular than others, there was no universally accepted way to talk about autism. Due to this variability, many participants highlighted that talking to autistic people and finding out their individual preferences will always be the best way to achieve effective communication.”

The research showed that terms such as “Autistic person”, “Is autistic”, “Neurological/Brain Difference”, “Differences”, “Challenges”, “Difficulties”, “Neurotypical people”, and “Neurotypicals” were among those most favoured by the survey group.

In contrast, terms that were unpopular included “Asperger's syndrome”, “Person with autism/ASD/ASC”, “Has autism”, “Disease”, “Disorder”, “Deficits” and “Impairments”, and “Typical people”.

Significantly, although “Asperger’s syndrome” was popular among some individuals initially diagnosed using this terminology, for others it had extremely negative connotations with a eugenical Nazi regime.

Similarly, a large number of respondents disliked the use of functioning labels. Participants reported that these terms are divisive, as they unnecessarily segregate autistic people, inaccurate, as functioning varies across time and situations, and harmful as it leads to so-called “high-functioning” individuals missing out on support and “low-functioning” people being infantilised or ignored.

Although there was variability in language preferences across the individuals surveyed, there was a clear overall preference for ‘identity first’ terms. These terms, including ‘autistic person’, or ‘neurodivergent person’, were perceived as better acknowledging that autism is a core part of a person’s identity, like gender or ethnicity.

In contrast, ‘person first’ language – ‘person with autism’, for example, was often judged to promote stigma, reinforcing the notion that autism is a defect that must be removed from the individual.

The research showed that terms such as “Autistic person”, “Is autistic”, “Neurological/Brain Difference”, “Differences”, “Challenges”, “Difficulties”, “Neurotypical people”, and “Neurotypicals” were among those most favoured by the survey group.

In contrast, terms that were unpopular included “Asperger's syndrome”, “Person with autism/ASD/ASC”, “Has autism”, “Disease”, “Disorder”, “Deficits” and “Impairments”, and “Typical people”.

Significantly, although “Asperger’s syndrome” was popular among some individuals initially diagnosed using this terminology, for others it had extremely negative connotations with a eugenical Nazi regime.

Similarly, a large number of respondents disliked the use of functioning labels. Participants reported that these terms are divisive, as they unnecessarily segregate autistic people, inaccurate, as functioning varies across time and situations, and harmful as it leads to so-called “high-functioning” individuals missing out on support and “low-functioning” people being infantilised or ignored.

Although there was variability in language preferences across the individuals surveyed, there was a clear overall preference for ‘identity first’ terms. These terms, including ‘autistic person’, or ‘neurodivergent person’, were perceived as better acknowledging that autism is a core part of a person’s identity, like gender or ethnicity.

In contrast, ‘person first’ language – ‘person with autism’, for example, was often judged to promote stigma, reinforcing the notion that autism is a defect that must be removed from the individual.

The Forum is called like this:

"Wrong Planet" is the leading community forum and resource supporting *people with *autism, *Asperger's Syndrome and other neurological conditions.
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Maybe it's more politically correct.
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I suppose it's unlikely that the part that you don't like from the survey will be changed

Because it's complicated and also a request that requires re-programming and there are already only a few moderators, as far as I understand there are 4.

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That's fine with me, as well as having an idea of ​​how you think, and I'll adapt until the next post in this sense.

When I read it now:

"Wrong Planet" is the leading community forum and resource supporting people with autism, Asperger's Syndrome and other neurological conditions.

the phrase doesn't seem to have the same contrived, clumsy unnatural feel to it as it does in most of the sentences I've seen that contain that phrase.

If it is important to some people that is fine, but I have heard of some social media figures within the Autism community being rejected and bullied for not using the person first terminology that a certain section of the community prefers. I don't think that is right.

I'm surprised to see the result so far of the poll. No one prefers "person with autism". I think this kind of discussion sometimes happens in the autism community: person-first language and identity-first language. In this case "person with autism" is person-first language and autistic person is identity-first language. I thought in the past many people on the spectrum preferred person-first language but now it seems to have changed.

Personally, I prefer whichever term flows best in a given sentence. Usually that's "autistic person," but occasionally I'll say "person with autism."

What I really dislike are euphemisms like "on the spectrum." Occasionally I'll say "on the autism spectrum," but never just "on the spectrum." After all, the word "spectrum" has many different meanings, most of which have nothing to do with autism.

Another term I've heard occasionally, that I really dislike: referring to autistic people as "spectrumites." What's a "spectrumite"? An employee of Spectrum cable?

Abstract
Individuals diagnosed with autism spectrum disorder (ASD) present with a highly diverse set of challenges, disabilities, impairments and strengths. Recently, it has been suggested that researchers and practitioners avoid using certain words to describe the difficulties and impairments experienced by individuals with ASD to reduce stigma. The proposed limitations on terminology were developed by only a subset of the autism community, and the recommendations are already causing negative consequences that may be harmful to future scientific and clinical endeavors and, ultimately, to people with ASD. No one should have the power to censor language to exclude the observable realities of autism. Scientists and clinicians must be able to use any scientifically accurate terms necessary to describe the wide range of autistic people they study and support, without fear of censure or retribution.

INTRODUCTION
Individuals diagnosed with autism have a broad range of clinical presentations, all falling under the diagnostic umbrella of autism spectrum disorder (ASD). Recently, some autism community members have urged a dramatic lexical shift concerning ASD—namely, that the field should dispense with language that connotes impairment, pathology or suffering, in favor of “neutral” terminology reflecting an understanding of autism not as a medical issue, but rather as a form of human diversity. Three recent articles suggest avoiding or replacing terms like “disorder,” “deficit,” “risk,” “symptoms,” “challenging/problem behavior,” “comorbid” and “prevention” to acknowledge ASD as a benign part of the human condition (Bottema-Beutel et al., 2020; Dwyer et al., 2022; Monk et al., 2022). And in many cases, certain words are labeled “ableist” without thought or consideration given to the context in which they are used.

Autism is a spectrum of abilities, disabilities, strengths and challenges, and requires the use of a broad spectrum of descriptors (Lombardo & Mandelli, 2022). Censorship of certain terms exerts a chilling effect on research and clinical practice, particularly on individuals and their families who experience autism as a life-limiting disorder rather than a divergence or identity. In addition, general terms like “difference” are neither accurate nor precise and cannot clearly capture the realities of people across the spectrum.

While scientific words may at times provoke feelings of social stigmatization in some people, the response should lie in addressing that stigma, not in eliminating fact-based, accurate descriptors in clinical, medical and scientific discourse. Moreover, the words targeted for elimination apply almost exclusively to individuals who are the most severely impacted by autism—individuals who have already been identified as underserved despite their desperate need for meaningful interventions (Lord et al., 2020; Stedman et al., 2019; Thurm et al., 2021). We call for the continued utilization of accurate, scientifically and clinically appropriate terminology in research, advocacy, service delivery and policy across the autism spectrum. It is imperative that clinicians and scientists have at their disposal a comprehensive vocabulary to describe the very different individuals and subpopulations they address. This commentary will not be presenting yet another list of words and alternatives; rather, we hope that scientists and clinicians use the terms they feel best represent the science and the communities and individuals they serve. We also hope that their choice of terms will not be met with attacks or humiliation, either in person or online. In addition, we need to remember that ethnic and cultural factors may influence the choice of words used and that appropriate vocabulary should not be dictated by mostly white, non-Hispanic individuals. This commentary encourages people to use the terms that they feel are most appropriate to describe themselves, their family members, their research subjects and their patients.

We can look to other disorders for context in this debate on autism. In the realm of substance abuse, many in the field have called for terms that accurately reflect the condition and situation of the individual, albeit with warnings against using pejorative language or terms that have been used as insults, such as “crackhead” or “junkie” (Alinsky et al., 2022; Goldberg, 2020). Use of terms such as “substance use disorder” and person-first language such as “person with substance use disorder” is linked to a public health approach that captures the medical malfunction inherent in addiction, while decreasing stigma and increasing help-seeking (Kelly et al., 2015; Volkow et al., 2021).

There are also inherent contradictions in the logic of limiting autism-related terms. For example, while some would argue autism is more of a social construct and that person-first language can perpetuate stigma in autism (Gernsbacher, 2017), others would use that same language to destigmatize behavioral impairments with biological underpinnings (Volkow et al., 2021). Likewise, terms like “at risk” or “symptoms” originate in the medical and biological model as part of efforts to explain the pathology of the brain, including structural differences and their roots in genetic deletions and duplications resulting in autism (Andrews et al., 2022; Leppa et al., 2016; Trost et al., 2022). These findings reduce stigma by attributing behaviors and functions to underlying biology instead of personal faults. The intent of using these terms is to describe processes in development which lead to behavioral impairment, and to provide targets for beneficial treatments and interventions. Just as the substance abuse field has, we acknowledge that some words should no longer be used. For example, some medical terms, such as “mental retardation,” have been converted to insults like “ret*d.” These are clearly pejorative terms used for the purpose of insulting and dehumanizing others; these terms should not be used and have been universally rejected. But, for example, a decision to use “person with autism” or “autistic person” is a matter of preference, as neither are intended to demean people. In fact, “person with autism” has been embraced by a large proportion of the autism community (Kenny et al., 2016).

There does not need to be a battle between the two viewpoints around autism vocabulary; there is room across the spectrum to acknowledge that autism can be a state of being for some, an impairing condition for others and somewhere in between for many. Restricting terms used to describe autism will not change the nature of a person's autism nor will it eliminate the impairments and symptoms experienced because of an autism diagnosis. It will not result in clinical benefit for some while reducing any services for anyone else.

“SCIENTIFICALLY ACCURATE” ACROSS THE SPECTRUM
Autism Spectrum Disorder encompasses a wide variety of symptoms, impairments, biological underpinnings, co-occurring conditions, effective interventions, supports and risks (Lord et al., 2020), and there are likely multiple categorizations within the umbrella term (Lombardo & Mandelli, 2022). It is imperative that clinicians and scientists have a comprehensive vocabulary at their disposal to describe with accuracy the very different subpopulations they address. Banning certain words makes accurate scientific descriptions impossible. For example, the word “co-morbid” (on the list of disfavored terms) is used to describe a chronic medical or psychiatric condition that is connected with another condition. Conditions such as gastrointestinal (GI) disorders, seizures, ADHD and OCD have been considered “co-morbid” (Bougeard et al., 2021). “Co-occurring” (a suggested alternative) only refers to things that happen at the same time. This may or may not refer to conditions including depression and anxiety, or it may depend on the person rather than the condition. To accurately describe individuals with autism and conditions like ADHD, GI dysfunction, insomnia and seizures, as well as other debilitating conditions, “comorbid” is the accurate term as it conveys the chronic and persistent nature of these problems (Brainstorm et al., 2018; Cross-Disorder Group of the Psychiatric Genomics Consortium. Electronic address & Cross-Disorder Group of the Psychiatric Genomics, 2019). Both co-occurring and comorbid are correct to use under different situations. The scientifically correct term should always be used.

CONSEQUENCES OF RESTRICTIONS
The authors of previous articles on this topic describe their proposed vocabulary as “suggested” and say it should not apply to disabling conditions that cause suffering, but to the autism itself. This distinction has not been clearly made in the autism literature and has been misinterpreted by readers of these articles as mandates. There is no nuance or context applied to the determination of appropriate terminology. We see no reason to carve out a pure, pathology-free “autism” when we can find nothing in the diagnostic literature describing it. Further, while we appreciate the intention of reducing stigma, the list of terms suggested to be eliminated has unfortunately already been weaponized against scientists and against family members who do not consider autism a simple “difference.” The list of restricted terms has been used to insult, bully and demean those who use the terms (Alice, 2022; Blaber, 2022; Carley, 2022; Donnelly, 2022; Lutz, 2021; Michael, 2022; Natri, 2022; Shakes & Cashin, 2020; Witch, 2022). Ironically, the intention to narrow permissible language to promote inclusivity is having the opposite effect, and the community is becoming more polarized. These are just a few examples of the real abuse that individuals who choose to use terms like “disorder” and “protective effect” have endured.

In addition, access to vital research grants has been compromised due to a misunderstanding that applications must use certain preferred terminology. For example, students and early-career investigators, observing regular attacks on researchers whose language and work do not fit the neurodiversity paradigm, are expressing hesitation about remaining in the field of autism research and have shared grave concerns about presenting autism findings at public conferences for fear of retribution and retaliation. There are reports of scientists being attacked at meetings for making presentations that include certain words, for example, “risk,” at an epidemiology meeting where “risk” is a scientific term that is not meant to stigmatize.

DISCLOSURE
The authors are all mothers of individuals on the spectrum. Three have children with what can be described as profound autism, and another cares for a daughter who is autistic and in a mainstreamed learning environment.

I happen to like “on the Spectrum” because this covers people who might not be diagnosed with autism, but who have definite autistic traits. It reflects the varied presentations of autism.

It sort of “softens the blow,” too, especially for those who feel ashamed of having autism.

I like "on the spectrum", too. As you said, it reflects the variability of autism, neither suggesting "a walking diagnosis" nor something external and unrelated to who one is.

I also use the term "ND", for even broader concept of variety, including things like ADHD, dyslexia, etc. I'm not super fond of the name "neurodiverse" but I find the concept useful.