Research on autism terminology shows no consensus, factors influencing term offense vary widely, emphasizing respect in language use.
Recent investigations into the terminology preferences for describing autistic individuals have stirred considerable debate on autistic forums and social media. Remarkably, it appears that only autistic individuals in uninhabitable regions or countries where autism is taboo have not been consulted.
Typically, such research is conducted twice. Initial findings often reveal a lack of general interest, yet “person-first” terminology tends to prevail. Once these results gain some media attention, a follow-up study is usually conducted, aimed at definitively demonstrating that an aware autistic individual identifies as a user of ‘identity-first’-language.
Research indicates that there is no universal consensus on the appropriate terms to use, and preferences vary significantly based on individual and group factors. There is no clear preference or consensus for a specific term, and most studies suggest that the choice of terminology has less to do with identity, autism awareness, acceptance of the diagnosis, or confidence than some identity advocates claim.
Moreover, the relevance of most of this research is limited, as the participants often do not reflect the broader autism community. They are typically recruited online, and drawing broad conclusions from these results is challenging. Autistic individuals, parents, caregivers, and professionals generally have more pressing concerns than debating the nuances of medical versus identity-related terms.
I find it more intriguing to explore why certain autistic individuals take offense to specific terms and how micro, meso, and macro factors play a role. According to researchers and theorists, the offensive nature of terms can depend on a wide range of influences and factors, many of which are subconscious to most individuals.
Autism literature discusses factors such as personal identity development, life stages, timing of formal diagnoses, community norms, cultural and social contexts, the power and organization of social security, the historical impact of religion on attitudes towards differences, linguistic nuances, social pressures, and arbitrary preferences.
Some researchers believe that the offense stems from using terms initially intended for medical contexts in social settings, where they understandably become pathologizing and reductive, especially under the influence of a social model of autism.
Furthermore, some researchers feel that the pathologizing undertone is heavily influenced by feelings of victimization and revenge stemming from a history of marginalization and discrimination. These feelings can affect how terms are perceived, even if they are not meant to be pathologizing. Understanding and acknowledging these dynamics is crucial when discussing autism-related terminology.
Finally, some researchers argue that some interpretations of the historical marginalization and discrimination of autistic individuals are context-blind and used to support modern agendas, potentially leading to tensions and misunderstandings, especially when the historical context is overlooked. At the same time, it’s vital to respect and incorporate the current needs and preferences of autistic individuals into discussions about terminology and policy.
While most studies show a lack of consensus, nearly every study emphasizes the importance of respectful and consensus-based language when referring to autistic individuals. Given the absence of consensus, focusing on respectful language and prioritizing the exchange of ideas and solutions over semantics may be the best approach. This encourages moving beyond merely surface-level discussions at the “coffee table” and towards more meaningful dialogue.
The European Autist 