The autistic community is begging us to listen. So why aren’t we?

Last week I was interviewed on the ASHA Voices podcast alongside Rachel Dorsey, an autistic SLP. Here is the question we were addressing:

How can SLPs help parents build positive images of their autistic children, and help autistic children develop a positive self-concept? It’s not an easy question. But in a world where a large percentage of autistic people attempt suicide, this conversation is a matter of life and death.

Let's first talk about something everyone has an opinion on: Person-first vs identity-first language.

Person-first language is drilled into our heads in school. Person-first language is a philosophy that a person is first and foremost, a person. They are not defined by their “disability” (but we should say “difference”). Saying “person with autism” would be an example of person-first language. This compares to identity-first language, in which we would say this is an “autistic person.”

In the past, I made the argument that it was better to use person-first language when communicating with parents who had children with a recent diagnosis. Why? Many parents I meet are in denial at this stage, and haven’t accepted the diagnosis yet. I felt that person-first language helped a parent to remember that their child was first and foremost that, a child.

But after some extremely enlightening conversations with autistic adults, and reading recent research, I finally understood the significance of identity-first language and why it should be embraced by therapists.

Identity-first language embraces that autistic is an identity that one should take pride in, and a valuable piece of this person that should not be overlooked. And most importantly, the autistic community is begging us to use identity-first language. So why aren't we listening?

“Autism isn’t a tragedy,” Rachel said when we were recording the podcast. And she put a spin on a quote by Barry Prizant. She said, “Being autistic is just another way of being human."

What we need to realize is, we have the power in this situation. We have the ability to change the way parents perceive their children. And what happens when we talk about autism like it is a tragedy, focusing only on the child’s deficits? Parents will feel that autism is a tragedy. Parents will succumb to societal pressure and try to change who their child is, because their child isn’t fitting in with the world’s view of what is “normal.” And eventually, their autistic children will grow up to feel like they’re not good enough...they won’t feel loved for who they are.

So here’s a question that is very relevant to us.

Why should we embrace identity-first language? Specifically, us...therapists?

If we use identity-first language when talking to parents about their kids, we can help parents to build positive images of their children, encourage them to accept their child for who they are, and foster positive self-concept in their children.

We are the professionals. We are the people parents look up to for advice. We’re the experts. And our language matters. If we can help parents to embrace their child’s identity, and love them and support them in every way, wouldn’t we want to do that?

LOTS more to come on this topic...including some specific ways we can speak to parents about autism. And look out for our ASHA Voices podcast should be coming out in a few weeks. Rachel is incredible and I can’t wait for the SLP community to hear what she has to say. For now, check out her blog here.

Jessie Ginsburg, M.S., CCC-SLP is the founder of Pediatric Therapy Playhouse, a multidisciplinary clinic in Los Angeles, and the creator of ASD from the Inside Out, an online course for SLPs working with young autistic children.

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