Nationally and internationally, efforts are ongoing to promote diversity, equity, and inclusion in healthcare and other fields. These efforts require consideration of ways in which language and assumptions impact individuals and communities. The autism and disability spheres are no exception. Indeed, the mental health of autistic people is predicted by the degree to which they feel society accepts them as autistic.1 Thus, we believe discourse that disparages autism could be harmful to autistic people’s well-being. Autistic individuals who face further stigma and discrimination due to other intersectional identities might be particularly vulnerable. Unfortunately, autism research and practice have traditionally used disparaging language grounded in the medical model.
Some might object that alternatives to traditional medical model terms are subjective or unscientific. However, we believe traditional terminology is heavily laden with subjective value judgements. For example, the traditional term “disorder” has a decidedly negative connotation. It also implies that individuals’ own characteristics are responsible for their challenges, and it suggests a need to eliminate this disorder. In contrast, the more nuanced word “disability” allows both individual characteristics and societal or contextual barriers to contribute to challenges. The term disability thus appears to be both more scientifically appropriate and less stigmatizing toward a vulnerable population than disorder.
In Table 1, we list various traditional terms and concepts that we believe are problematic, along with suggested replacements. We also suggest that practitioners and researchers balance a focus on autistic individuals’ challenges with discussion of their strengths and potential. This balanced approach may be especially important for families of young children whose futures may be unclear and a source of considerable anxiety to caregivers.
TABLE 1.
Traditional Terms, Concepts, and Ideas, Along With Suggested Alternatives.
| Traditional Terms, Concepts, and Ideas | Suggested Alternatives |
|---|---|
| Disorder | Disability |
| Autism spectrum disorder | Autism, autism spectrum development, autism spectrum disability |
| Deficit | Area of challenge, difficulty |
| Autism symptoms | Autism characteristics, traits, features |
| Red flags for autism | Signs or indicators of possible autism |
| Problem behavior or challenging behavior | Distressed behavior, meltdown, more specific description of the behavior (e.g., self-injury, destruction of property) |
| Restricted interests | Focused, intense interests |
| Comorbid | Co-occurring |
| Riska | Likelihood, probability |
| Risk factora | Predictive factor, predictor, correlate |
| Healthy controls | Typically-developing or neurotypical (if screened for other diagnoses), non-autistic (if only autism ruled out), or general population (autism not ruled out, group not sampled with regard to autism status) controls |
| High-functioning or low-functioning autism, severe autism or severity of autism | Descriptions of relevant individual characteristics (eg, autistic person with or without intellectual disability or language impairment) Descriptions of support needs, grounded in specific contexts (as needs vary across contexts) |
| Prevention of autism; treatments focused on reducing autism symptoms and on promoting recovery, normalization, and “optimal outcomes” | Interventions and supports aimed at curing or preventing co-occurring medical problems (not autism itself), at teaching adaptive skills to individuals, at making environments accessible, and at promoting quality of life or well-being or thriving |
| Rigid, inflexible | Consider: in any particular instance, is it the autistic individual, the environment around them, or both that is or are inflexible? |
Only problematic when applied to autism; may be appropriate for many co-occurring conditions.
Furthermore, researchers and practitioners should be aware of an ongoing debate between supporters of identity-first (“autistic person”) and person-first (“person with autism”) language. Many autistic individuals support identity-first language2,3 and some fear that person-first language reflects negative attitudes toward autism.4 However, others endorse person-first language.2,3 The term “person on the autism spectrum” is often the most preferred term among autistic individuals and other stakeholder groups,2,3 and this verbiage is typically found to be acceptable by proponents of both person-first and identity-first language. Practitioners should ask about and respect the language preferences of individuals “on the spectrum” who can articulate their views.
Overall, in light of concerns that typically-developing people struggle to understand autistic perspectives,5 we urge practitioners and researchers to strive to have empathy for how their language sounds to autistic people. We also suggest it can often be helpful to ask oneself if one would use similar phrasing with other marginalized communities. We feel that there needs to be a shift toward “cultural humility” and willingness to learn from autistic people about autistic identities and how to promote autistic well-being.
Practitioners and researchers interested in a more detailed discussion of appropriate autism terminology should refer to Bottema-Beutel and colleagues.6 We provide definitions of neurodiversity terminology (eg, neurodiverse, neurodivergent) in Supplemental Table 2.
Supplementary Material
FUNDING:
This study was supported by National Institute of General Medical Sciences grant T32-GM007347 (Z.J.W.), National Institute on Deafness and Other Communication Disorders grant F30-DC019510 (Z.J.W.), and the Nancy Lurie Marks Family Foundation (Z.J.W.). No funding body or source of support had a role in the preparation or decision to publish this article. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health or other sources of support. Funded by the National Institutes of Health (NIH).
Footnotes
CONFLICT OF INTEREST DISCLOSURES: All authors of this commentary receive financial compensation from serving on the Autistic Researcher Review Board of the Autism Intervention Research Network on Physical Health (AIR-P). Mr Williams also serves as a consultant for Roche and a member of the family advisory committee of the Autism Speaks Autism Treatment Network Vanderbilt site.
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