One mom wrestles to understand which term better serves individuals on the spectrum, including her son.
Should we say "with autism" or "autistic" when talking about kids or adults on the spectrum?
I get this question often. I also have readers ask me to change the way I use the terms in this blog, and hear a lot of confusion from my friends, family, and the professionals who work with my son, a non-speaking 7-year-old on the spectrum.
With autism, as with all things, how we speak about it reflects how we think about it, our priorities in relation to it, and what we believe to be the truth of it. For these reasons, many advocates are challenging the use of "person-first" language and reclaiming the term autistic.
At face value, person-first language, which is what Parents uses when writing about ASD, makes sense. It puts the person before the disease. We don't say things like "my diabetic brother" or "my cancerous mother." Those are cringe-worthy constructions, indeed, and many people argue that saying "my autistic son" is in the same league.
The problem here, however, is both simple and complex. By using person-first language and saying "my son with autism" in conversation, I'm calling his autism a disease, like cancer or diabetes. Wrapped up in that is the notion that a disease needs a cure, that my child needs "fixing."
While my son needs help to overcome his communication and sensory challenges, he doesn't need fixing. Autism is his neurology. It's how his brain is wired and an integral part of how he experiences the world. You can't cure neurology, and I think the implications of trying to are unsettling.
It's for these reasons that many people on the spectrum refer to themselves as autistic. There's a wonderful, detailed explanation of this on the Autism Self-Advocacy Network's website, but some key points of their stance on language are worth quoting here:
"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 identity as an Autistic person because we are saying that autism is something inherently bad like a disease.
Yet, when we say 'Autistic person,' we recognize, affirm, and validate an individual's identity as an Autistic person. We recognize the value and worth of that individual as an Autistic person—that being Autistic is not a condition absolutely irreconcilable with regarding people as inherently valuable and worth something. We affirm the individual's potential to grow and mature, to overcome challenges and disability, and to live a meaningful life as an Autistic. Ultimately, we are accepting that the individual is different from non-Autistic people–and that that's not a tragedy, and we are showing that we are not afraid or ashamed to recognize that difference."
So, what do I do when faced with this debate? For now, I say "Liam" when talking to my son and about him. I tend to say "my autistic son" when telling people about him in more detail in my non-blogging life. Since I'm writing within a particular context here, I stick to person-first language because that reflects the magazine's official stance.
In time, I hope I can ask my son what he prefers and I'll use that. For now, no matter which terms I use, I'll keep trying to spread a message of hope,acceptance, and inclusion whenever and however I speak about autism.
Jamie Pacton lives near Portland where she drinks loads of coffee, dreams of sailing, and enjoys each day with her husband and two sons. Find her atwww.jamiepacton.com, Facebook (Jamie Pacton), and Twitter: @jamiepacton.