"Person with autism," "autistic person", or does it not matter?

(Blog by Hannah de Laet)

In recent years, there has been increasing discussion about the "correct" way to refer to people with an autism diagnosis. This debate is particularly intense in English-speaking parts of the world, but it is also becoming more prevalent in Dutch-speaking regions. The two most common terminologies are "autistic person" and "person with autism." Studies conducted in English-speaking countries found that most people with autism preferred the term "autistic person". However, the results of a new questionnaire carried out by the EXPLORA research group (Ghent University) showed that in Belgium and the Netherlands, most people with autism prefer the term "person with autism."

Over time, there have been many changes in the preferred terminology. Usually, a distinction is made between "person-first language" and "identity-first language". The term "person with autism" is an example of person-first language, where the emphasis is placed on the fact that someone is a person - who also happens to have autism. "Autistic person", on the other hand, is an example of identity-first language, whereby autism is seen as a part of a person's identity. Initially, it was recommended to use person-first language in articles. However, more recently this recommendation has been debated heavily, and individuals are advocating for the use of identity-first language.

EXOLORA carried out one of the first studies on the terminology preference of individuals with autism in a different language than English. In this study, over 400 Dutch-speaking people with autism from Belgium and the Netherlands were surveyed on their preferred terminology. Participants had four different answer options to choose from: "person with autism", "autistic person", "no preference" or other preference. For this last option, participants could indicate their own preference. For the purpose of this blog, the terms are translated into English but in the original questionnaire, they were in Dutch. The majority of people chose "person with autism" (54%). Additionally, many people indicated that they had no preference (27%). A smaller group preferred "autistic person" (14%), and an even smaller number of people preferred another terminology (5%), such as "autist." We found no differences in preference between people from Belgium and the Netherlands.

Even though there are different terminology preferences within the English-speaking autism community, most studies found that people with autism generally have a preference for identity-first language (e.g., "autistic person"). The results of this study in Dutch do not align with studies in English, but they are consistent with a study from the Netherlands (Buijsman et al., 2023).

We believe that the difference in language preference between Dutch and English may be due to the fact that the word "autist" is often used as a derogatory term in Dutch, resulting in a preference for person-first language. This study is also the first to give participants the option to indicate that they have no preference between person-first and identity-first language. Almost a third of the individuals with autism chose this option. This demonstrates that while many people have a clear opinion, there are also many people for whom the exact terminology does not matter.

While most people prefer the term "person with autism", we found that older individuals were more likely to have no preference, and people with more years of education were more likely to prefer the term "autistic person". There are several possible explanations for this second result. People with more years of education may have better knowledge of the English language and be more active on social media, which could make them more influenced by the ongoing debate in the English-speaking autism community. Additionally, these individuals may experience fewer negative effects of their autism, leading them to view autism more as part of their identity compared to people with less years of education.

When communicating with a person with autism, you can directly ask them how they prefer to be addressed. However, what term should be used in general communication and scientific articles? There is still no general consensus on this matter. Until now, it was recommended to listen to the preference of the "majority". However, with this study, we found that the term preferred by the majority is influenced by various factors (e.g., time, language, age, and years of education). Therefore, we recommend basing the choice of term not on the preference of the majority but on other arguments. In this text for example, we use a shortened version of the diagnostic term, and refer to a person with a diagnosis of autism spectrum disorder as a person with autism or a person with a (diagnosis of) autism. Our intention is not to take a position in the person-first or identity-first debate. Additionally, it is essential to show respect by explicitly acknowledging and recognizing that there are people with different language preferences.

Read the full preprint of the paper here.