English-Language Autism Terminology Preferences of Autistic People and their Parents in the United States: Clustering...

Autism terminology preferences are the subject of considerable debate and various studies, the results of which sometimes conflict. This study examined diversity in terminology preferences in a U.S. sample of 3,181 non-autistic parents and 2,098 autistic people (including 451 autistic parents). The study also examined a particularly wide range of language issues: participants rated terms for autism, possible subgroups within autism, autistic people, autism likelihood, and autistic characteristics. Non-autistic parents', autistic parents', and autistic non-parents' terminology ratings differed, but generally modestly. Using clustering to explore response patterns revealed greater variability. Almost half of the participants were grouped in the Open Cluster, characterised by liking or neutrality towards most terms. Others were grouped in the Identity-First Cluster, characterised by support for identity-first language, strong opposition to terms for possible autism subgroups, and rejection of many pathologising terms. Other participants were in the Person-First Cluster, characterised by support for person-first language, yet still some scepticism towards terms for possible autism subgroups. Autistic participants were overrepresented in the Identity-First Cluster, while non-autistic parents were overrepresented in the Person-First Cluster. These results suggest that there is presently no consensus regarding autism terminology preferences in the United States.Community AbstractWhy was this study done? It is important to respect how members of any community want to be talked about. However, previous studies about terminology preferences in the autism community sometimes provide different results. These conflicting results suggest that prior studies are not always capturing the diversity of terminology preferences in the autism community.What did the researchers do? We recruited large groups of autistic and non-autistic people in the United States. We asked them to rate different terms for talking about autism, subgroups within autism, autistic people, characteristics of autism, and the likelihood that somebody will later be diagnosed with autism.We then clustered the data, which means we let participants' responses sort themselves into clusters of similar responses. This allowed us to highlight the diversity of people's views.What did the researchers find? We found some terms that almost everyone liked, such as "autism," and other terms or phrases that almost everyone disliked, such as "person suffering from autism." However, most terms were liked by some people and disliked by others.We describe an "Open Cluster" of participants who like or have neutral feelings towards most terms.We describe an "Identity-First Cluster" of participants who like identity-first language and dislike terms for subgroups within autism. Identity-First cluster members also disliked many terms that imply autism is a bad thing, like "risk" for autism.Finally, we describe a "Person-First Cluster" of participants who like person-first language. Person-First Cluster members disliked some terms for subgroups within autism, but not as strongly as Identity-First Cluster members did.What are the implications? This study shows that autism community members do not always agree about terminology. This means that it is important to be thoughtful and considerate in how we talk about autism.