David and I would both like to weigh in on this conversation. For several years, with increasing sensitivity that a condition is not that person’s entire identity, it has become politically and professionally correct to refer to a person first, and then their diagnosis. Example: person with diabetes, rather than “a diabetic.” This is known as person first language. So, based on respect, it became a standard to refer to individuals on the spectrum as “persons with autism.”
In recent times, however, the preference has been shifting in regards to autism, and it seems that this choice is arising from the people on the spectrum themselves. Many prefer the identity first reference of “autistic person,” or “ASD individual” (autism spectrum disorder (ASD) is the formal diagnosis).
Why this change?
The pervasive nature of autism impacts every area of that person’s daily life functioning. Many on the spectrum feel that autism IS inherent in their identities and can’t be separated from who they are. It is different than an isolated condition that becomes an issue intermittently. But probably a more significant rationale for the new trend is that many people are developing a pride for being on the spectrum. They are not offended by being called autistic—they accept and embrace their differences and see the many gifts and strengths that it imparts.
As a result, in much of the literature and in general referencing, the terminology is now based on personal preference. There is no rule either way as to what is more appropriate—either option is largely acceptable.
What are our opinions?
I actually don’t have any strong opinions on this topic. I have no problem at all with being referred to as autistic, but if others want to refer to me as a person with autism, I am cool with that too. For me, once I embraced and accepted my diagnosis (after a period of denial in my tween/early teen years) I have always identified myself as being autistic. I feel like the term is more up-front and it gets the uncertainty over with. It’s a good way for others to see that I’m comfortable with my autism and that it’s not something to be dwelled upon. I am definitely more than just my autism, but at the same time autism IS who I am. I call myself autistic, rather than a person with autism, but I really have no preference. I have gained the confidence and assurance of who I am and what I need, and I advocate for myself, but otherwise, autism is not my main focus of my day, though it’s always in the background. What people want to be called is on a person-by-person basis.
Being part of the medical community as an RN, I am trained in person first language and its rationale, and I have used it for many, many years. So, it was a hard perspective to reconsider, and it was a difficult habit to break in regards to thinking about my own son. But after listening to David and other autistic individuals regarding their opinions on the subject, I am much more comfortable and in favor of identity-first jargon regarding autism…especially if it’s what the person prefers. In our second edition book, you will see a shift in our language in the two new chapters as our opinions and the times have evolved (mine lagging behind David’s). We tend to toggle back and forth now, with more use of the identity-first approach. And truly, the latter feels much less cumbersome and more natural, which I hope parallels how typical and autistic people are learning to interrelate. Since the DSM-5™ changed the diagnosis and labeling of autism in 2013, there has been much more media coverage and education about ASD (a mission David and I enthusiastically participate in). It seems to me that the public has become more relaxed, more open, and less “fearful” about it as they meet and interact with more autistic people personally and professionally—and I feel that identity first language has helped ease stereotypical images and thinking. The bottom line is that the opinion of each person should be considered and respected individually. And based on personal journeys and changes in perspectives, their preferences of how to reference/be referenced could change, as did ours.