Our Autism Story – “Autistic Person or Person with Autism?”
“Autistic person” or “person with autism”? Identity-first or person-first language? Which is correct?
This is a sensitive and complex question. But, I think it’s an important one. So, I’m going to try my best to start the conversation and ask for forgiveness and grace if I take a wrong turn.
First, our backstory…. Brahm is eight years old. For most of those eight years, we referred to Brahm in person-first language as “a person with autism”. As parents, we just saw “Brahm”. Sure, autism was a part of Brahm, but it somehow felt strange to us to lead with autism. We just wanted the world to see our big man. So, we used person-first language. Additionally, at the time, person-first language was used most commonly in our autism circles, so it seemed like an okay approach.
However, I noticed a change or a new message in our autism circles over the past year or so. There was a push to use identity-first language such as “autistic person”. I wanted to understand which language we should be using, so I did some research including seeking opinions from autistic individuals. Here’s what I found:
“Person with autism” – Some people think the “with autism” part implies autism is separate from the person. Caregivers are the ones that more often use this term as they want to recognize the individual is first and foremost a person and that autism doesn’t define them. However, autistic individuals oftentimes dislike this person-first language as it implies autism is a disease or something bad and could somehow be separated from them.
“Autistic person” – Some people think identity-first language better represents that autism is not just a part of who they are, but who they are. This language doesn’t try to hide or minimize autism, but rather puts it at the forefront as something to be proud of. It can be empowering. Identity-first language is generally the preferred approach for autistic individuals.
I also found there is not a single term that is preferred by everyone. While many or most autistic people prefer identify-first language, others prefer person-first language or do not have a preference. This is the tricky part. What should I do?
I went to my favorite source for all things autism – Brahm! I asked Brahm if he would rather be described as “a person with autism” or “an autistic person”. He immediately said “autistic person”. I tried to ask him if he could give me a little information to help me understand why he chose that language. He said he didn’t know why, but he just liked it better. That was good enough for me! I told Brahm we would use “autistic person” going forward and gave him a big thanks for helping us understand.
As I’ve been thinking about this topic, something popped into my mind…. Over the past half year, Brahm asked us a few times if we wish he was born with or without autism. My response has always been that we love Brahm exactly as he is, and that’s the way he was born, and we love the way he was born. Autism is Brahm and Brahm is autism. I think Brahm feels the same way and that is why he identifies as an autistic person.
The takeaway for me on all of this is that when I don’t know something, I should do my research and just ask! I have learned so much from Brahm and am so appreciative of his willingness to help me!
P.S. – I hope this information helps to start the conversation. I emphasize that each individual has their own preference and identify. While I tried to summarize thoughts by the majority, it is likely best practice to have a conversation with each person to best understand their individual preferences.