There is an on-going heated debate in the autism community, mainly between self-advocates and parental advocates on whether to identify as “autistics,” “autistic people,” or “people with autism.” This is not an argument about semantics by people who are excessively sensitive to political correctness, but rather an important discussion about how autistic people and their advocates want to identify themselves and be identified by others. The tricky part of this argument is that ultimately, both sides are on the same side, they just have a fundamental disagreement about the most empowering and respectful terms of identification.
Words and language are incredibly powerful, not just in the ways they allow us to express ideas and share information, but in the way subtle semantic nuances and social connotations can dramatically change the tone and attitudes implicit in communication and influence the ways they are received. All cultures have preferred terms for self-identifying, and it can be very confusing for people outside that culture who want to use the most respectful, appropriate, or politically correct terminology for identifying people as being of that culture.
Many self-advocates in the autism community and their allies prefer identifiers such as “Autistic,” “Autistic person,” or “Autistic individual” because they view autism as an inherent component of their identity as an individual, just as people choose to be referred to as “Muslims,” African-Americans,” or “Jewish.”
On the other hand, many parents of autistic children and autism professionals prefer the use of “person-first” identifiers; “person with autism” rather than “autistic person.” They want their children to be identified as children first or people, to emphasize their humanity and that they are, in fact, people first. Many parents are also very sensitive to judgment on their children’s behalf, and believe that for many people the word “autistic” carries negative connotations.
This movement for person-first language aims to emphasize the value of the person over the importance of the condition or disability. This only seems to be an issue, however, with modifiers that are seen to be negative. For example, there is no hotbed debate (for now, at least) over whether it is inappropriate to refer to someone as a “diabetic” or “diabetic person,” and so you will rarely see or hear the phrase “person with diabetes” as a descriptor. So this attempt to neutralize a negative societal connotation through semantics, can actually serve to reinforce it.
Self-advocates also oppose person-first terminology because it seems to imply that they can be separated from their autism. They can’t be separated from their autism any more than they can be parted from their ethnic background. Nor should they be made feel that they should want to. Self-advocates argue that it is impossible to affirm the value and worth of an autistic person without recognizing that they are autistic.
Both sides of the fence agree that using phrases like “suffers from autism” or “autism sufferer” are not acceptable terms and are harmful in the shaping of societal attitudes towards autism. To many self-advocates, however there is an implied “suffers from” in the person-first terminology. They don’t want to imply that there is anything unfortunate about their autism or that they would be better people if they were neurotypical people. Self-advocates want to be feel empowered by their self-identification, not apologetic.
Where the semantics and grammar collide, lies a fundamental question hidden deep between the lines: is autism something you have or something you are? From a non-linguistic perspective, it is both. Autism is expressed as an individualized set of neurological, physical, social, and/or psychological characteristics that mean it is something you have, in the same way I have red hair and pale skin. It is also fundamental to the formation of the identity of autistic people in the same way that I am Irish. Is it possible that the context, then that should determine the most appropriate identifying terms?
In writing this blog, we have always employed both person-first and descriptive-first terminology interchangeably to appeal to the most people and in response to subtle differences in context. In researching this posting, however, the arguments from the self-advocates are most persuasive, in good part because our society respectfully agrees to identify a people with the terms they prefer. That is why it is vitally important for the autism community to continue this debate so we can inform the rest of the world what is the preferred, appropriate way to identify autistic people with autism spectrum disorders. Please respond to this post with your opinion, but remember to be respectful. At the heart of this debate is the shared goal of creating a societal standard that is the most respectful to autistic people and conveys the empowering connotations that they deserve.