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This is the next installment in a series written by Andrew Harris, MEd, about modern perspectives on autism spectrum disorder and how it is viewed and how those views are changing. Our ever-increasing understanding of the diversity of the human mind may hold the potential to change our approach dramatically.
By Andrew E. Harris, MEd
In my recent article for Aspire Wire, I focused on how we could change the way we interact with people on the autism spectrum by changing how we think about people on the autism spectrum. By focusing on strengths and passions first and keeping the framework of neurodiversity in mind, we can, in turn, have a positive impact on their self-esteem. If how we think about autism is so important, it follows that how we talk about autism must have an impact as well. I spoke about this recently with Justin Robbins, a friend and colleague who was diagnosed this year with autism. He summed up his point of view in an ongoing debate very concisely:
"Autism is a fundamental part of who I am, who we are, for good and ill. This goes all the way down to our very genetics. It is an identity, much like gender or race or religion. Saying "with/has autism" violates this fundamental truth by implying that you can separate a person from their autism. Consider how uncomfortable the phrase "person with gay" is! Not only are you saying that our autism can and should somehow be removed from us, but in phrases like "person with autism,” you imply that our being autistic is separate from us being people.”
Think about other ways we use language. We intermittently use person-first or identity-first language to describe people. I began to wonder why we use both, and what patterns were present.
For some of these examples, it might be clear to you which is the “appropriate” way to refer to a person. The appropriate way to refer to people who have been diagnosed with autism, however, is a longstanding debate. It can stir up a lot of passion, and reasonable people can come to different (and well-intentioned) conclusions. It is an important debate because the words we choose to use have an impact.
When I studied autism in graduate school, I was taught to use “person-first” language. People with disabilities are people first and foremost, after all, and this school of thought emphasized this by referring to this population as “people with autism”. Disability rights groups commonly highlight how terms like “the disabled” or “disabled people” can have a subconsciously dehumanizing effect. This school of thought became prevalent in the disability advocacy community in the 1980s, and has been widely accepted and used in many journals and educational settings.
Later in my studies, though, I began reading texts written by individuals that were diagnosed with autism that were self-advocates. These were not the voices of educators, parents or physicians; these were the voices of people that had been cared for or diagnosed by them. To my great surprise, many self-advocates strongly rejected person-first language, instead advocating for “identity-first language”. They asked to be called “autistic people,” not “people with autism”. The rationale has been described as follows:
1. Autism is inseparable from their identity – it is not a separate thing that can be removed or ignored, it is intrinsic to their neurology and as much a part of them as other core facets of their sense of self (gender, race, religion, sexuality, nationality).
2. Autism is something that they are proud of and makes them different – “with autism” sounds like they’re a person, but there’s something wrong with them that needs to be qualified. An autistic self-advocate named Kassiane Sibley summed it up well when she said, “Autism is an integral part of who I am. Autism is not a disease, a disorder, or something holding me prisoner in a shell. Autism is a culture, a lifestyle, and a way of being.”
This new, first-person perspective gave me pause. I could see the unintended impact of the well intentioned “person-first” way of referring to people who have been diagnosed with autism. I felt similarly to the writers – autism is an integral part of one’s self, and is more like a way of being than a disease. The way I was taught to use language undermined this though, and communicated something unintentional.
Since becoming aware of the debate, I have had this conversation with other clinicians, teens I work with, and parents. I have heard a growing consensus from the autistic community asking society to refer to their diagnosis as a part of their identity. Through those conversations, I have come to my own conclusions. I now consciously use “identity-first” language when referring to autistic individuals. I do this in concert with my efforts to highlight all the things that I love and appreciate about the autistic mind, while striving to foster a sense of pride and self-appreciation related to an autistic identity. I hope that my use of language helps the participants I work with to change a diagnostic label into an integrated part of their identity. I hope to show them that they can be proud to be autistic.
Regardless of whether you are thinking about this for the first time or have already formed a strong opinion, I urge you to consider the impact of how you talk about autism; weigh both sides of the argument and come to your own conclusions. Discuss this topic with individuals on the spectrum that you know, or find their voices online or in print. I feel it’s appropriate to give my colleague Justin the last word on the subject:
“Words guide our worldviews and mentalities. Words matter. These words matter; they affect everything from federal policy to personalized interventions. How we talk about autism changes how we think about autism and what we do in response to autism. And for those reasons, I proudly say that I'm autistic."
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