At one of our first IEP meetings, I asked about special education services provided at my son’s school, and referred to the students as “autistic children.”
“Children with autism,” the principal corrected me gently, and went on to explain that this was the preferred descriptor because it was important not to label the children with their diagnosis and to remember they were children first.
Her explanation was reasonable and rooted in caring for the students. As a newbie in the autism world, I accepted her expert professional guidance without question.
But when I started engaging in the online autism community, I learned about the “identity first” descriptor – those who chose to use it wanted to be described as “autistic,” rather than as “a person with autism,” because they felt their autism was a part of them as a person and did not need it to be separated from their description of themselves.
They quite understandably resented being told that they had to use the “person first” descriptor by others.
With the exception of those who corrected autistic adults as to how they could call themselves – which is just plain rudeness – in theory, both perspectives were grounded in caring and respect; respect for how the descriptor was used, its intent, and how the person in question wanted to be described.
I made the decision that when I needed to, for both my blog and my interpersonal interactions, I would describe my son as “being on the spectrum” and when he made a decision on how he wanted to be described – person first or identity first – that’s what I would use.
Then the time came.
The moment occurred when we were sitting at the table eating a meal. I was describing a brilliant blog post I had read by Chris at Autistic Not Weird, wonderfully discussing some of the conflicts that arise in the autism community, and recommending understanding and respect for all sides of the disagreements.
I appreciated the article because it acknowledged and described the commonalities that are at the bedrock of all the arguments – a desire for the best outcomes for loved ones, a desire for respect, desire for understanding, and a desire for love and caring from all proponents of all the sides presented.
As I talked about the article, the Navigator was confused – why would people argue about autism? I started outlining some of the issues for him:
Vaccines: He scoffed.
Cure: He shook his head.
Person first versus identify first: He cocked his head and asked me to explain more.
“I want to be called autistic,” he announced after I had finished. “Saying “person with autism” sounds like I have a disease. I don’t have a disease, this is just how I am.”
And then he added: “Actually, I want to be called by my name, but if you need to describe my autism I want to be called autistic.”
Make it so.
Published with the approval and permission of the Navigator.
Here’s a quick link to Chris’ post on Autistic Not Weird.
Also published on Medium.