I have been doing a lot of thinking and processing. It is so hard, way more emotional than I thought it would be, this knowledge I am gaining about my boy. I seriously thought, I’m a teacher. My husband is a teacher. We have seen beautiful, intelligent autistic children thrive and succeed. Having one of our own is no big deal. I was so proud of how I handled it. I thought I had my self under control. But it is harder to deal with than I thought it would be. I wrote about how autism is not a disease here. I have written about how I feel about autism here and here. I really believe that is it not a negative, not an illness to be cured, but a positive.
At the same time, I was also scared when Jake was diagnosed. I didn’t know what to think, to feel. I felt conflicted, negative about this word, this autism. But as I come to accept it, know it, believe it, and believe in Jake, I have come to see it as a good thing. However, I feel like I need to spread this idea. There are so many families facing this diagnosis. There are so many kids struggling to find their way with autism. There are so many teachers, classmates, siblings and grandparents affected. All of these people need to see autism as a good thing if autistics are going to find acceptance.
So I am going to use that word. Autistic. It’s a reversal of what I have been trained to use. As a teacher, I’ve been taught to use person first language. Person first language is important and respectful. It says, “your disability is not your identity.” For example, rather than saying to a special education teacher, “I have a physical disability, a epileptic, and an ADHD kid in my class,” I would say, “I have a student with epilepsy, a student with a physical disability, and a student with ADHD.” This small change suggests that it is the students who are important, not their diagnosis. This is such an important thing, and I truly believe in it, especially in contexts such as at school. I always want to know my students as people, not as labels.
However, when it comes to autism, I feel differently. Autism is not simply a disability. Words are powerful. I don’t want Jake to feel like he carries a burden, a negative, or a label. I want him to feel like who he is is just perfect.
These linguistic distinctions might seem trivial, but our language plays a key role in shaping our thoughts, our perceptions, our cultures, and our realities. In the long run, the sort of language that’s used to talk about Autistics has enormous influence on how society treats us, and on the messages we internalize about ourselves.
Autistic writer Jim Sinclair explains,
Saying “person with autism” suggests that the autism can be separated from the person. But this is not the case. I can be separated from things that are not part of me, and I am still be the same person. I am usually a “person with a purple shirt,” but I could also be a “person with a blue shirt” one day, and a “person with a yellow shirt” the next day, and I would still be the same person, because my clothing is not part of me. But autism is part of me. Autism is hard-wired into the ways my brain works. I am autistic because I cannot be separated from how my brain works.
So, when discussing a serious negative, I will say, someone has Crohn’s and Colitis, or someone has Cancer. I will not say such a person IS Crohn’s and Colitic or Cancerous. That would be ridiculous and insulting. Yet, when discussing attributes that contribute to someone’s personality or identity, I will say someone is Christian, or someone is tall. I would not say that they are a person with Christian beliefs, or that they have a strong height. That would be equally ridiculous. The difference is meaningful. Therefore, I will say that Jake is Autistic, not that Jake is a person with autism. He is Autistic, it is a part of his personality and identity that is neither his choice, like being tall, nor a negative, like having a disease.
Lydia Brown, another autistic advocate wrote,
When we say “person with autism,” we say that it is unfortunate and an accident that a person is Autistic. We affirm that the person has value and worth, and that autism is entirely separate from what gives him or her value and worth. In fact, we are saying that autism is detrimental to value and worth as a person, which is why we separate the condition with the word “with” or “has.” Ultimately, what we are saying when we say “person with autism” is that the person would be better off if not Autistic, and that it would have been better if he or she had been born typical. We suppress the individual’s identity as an Autistic person because we are saying that autism is something inherently bad like a disease.
This is why it is important to me to get it right. We are talking about autism at home. I have books with autism in the title all over the house. Jake is brilliant and learning to read. He is going to ask me, he is going to see them, and I am going to be ready for him. Autistic here, means something beautiful.
There is a key difference here for me, between saying someone is a person with Down’s Syndrome, for example, and a person with Autism. The difference is in how the culture, the kids, the teachers, and the community mean it. Years ago, it was common to use the word ‘retarded,’ which is hurtful, judgmental, and insulting. Now, we carefully avoid this negative word, preferring to appreciate individuals, including individuals with Down’s Syndrome. However, Autistic has become the new insult. It is viewed as a negative, as an insult, and as something to be avoided. I have heard it being used in schools and by public figures as a very negative thing. Unfortunately, saying person with autism doesn’t help in this situation. It is the same root word and association. When I say that Jake is Autistic, I am saying that being Autistic is not an insult. I am taking ownership of that word, that trait, and the right to decide the connotations it brings.
Jess, at Diary of a Mom talks about how she envisions her autistic daughter,
When someone spits ‘autism’ at her as a dirty word, I want her to turn it back on them, framed as her own. “Yes, I’m autistic. So? I’m damned proud of it.’” Heck, she could even throw in, ‘I’m sorry that you’re not, but that’s not my problem,” for good measure. And so too, she can use it to connect with others like herself, to be a part of a community of understanding and support and pride. And thank God that community exists and awaits her – forged and fostered by adults – adults who, in my experience, choose to be called autistic.