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Issue: February 2023, Voices of IDD
Against a white background and on top of a white table are a pile of small white tiles with black letters on them. The three tiles that are standing up spell out the phrase, "I Am."
Mara Topps
Solutions Coordinator, Partners4Housing

Since joining the team at Partners4Housing last fall, I’ve been so impressed with everyone’s commitment to taking good care of our families. Part of that includes staying current on what’s going on in the field of IDD services.

For example, a recent article by Michelle Diament in Disability Scoop caught the eye of one of my teammates, and she sent it around for discussion. (My team is great at that; we focus on the work at hand but never forget the impact of our work as it goes out into the wider world.)

The article, ‘Autistic’ Or ‘Person With Autism’? It Depends, looks at new research that “dives into the heated debate surrounding the language of autism and finds that preferences about how to describe those on the spectrum vary substantially depending on who you ask,” Diament writes.

The issue? Whether stakeholders in the autism community prefer “person-first language” (for example: a woman with autism) or “identity-first language” (“an autistic woman”). Their findings were interesting, and our team had a good discussion about what this means for us and our work.

“The vast majority of adults with an autism diagnosis — 87% — preferred identity-first language such as ‘I am autistic’ to describe themselves, according to findings published recently in the journal Autism,” Diament writes.

This surprised me; for so long in this field I’ve heard person-first language. It’s become second nature to me to use it. Yet this new research seemed to tell us this could be changing … and we need to pay attention.

The challenge for us is to be consistent – we choose one style over another in our website copy, our marketing materials, etc. For example, last summer The Arc switched from using I/DD to IDD. This standard has been adopted by all Arc chapters, and we follow their lead on questions like this.

Yet when we are working directly with families, it’s a different story. How do we know which they prefer? I believe the best way to navigate this is to ask, right from the start.

It’s a simple question: “Do you prefer person-first or identity-first language?” Sometimes families have a definite opinion; sometimes it launches an interesting discussion. Almost always, it makes them feel heard and respected … and that’s a great way to begin any kind of relationship.

This world is always changing; preferences may veer in a different direction in the future. And that’s okay … because I’ll still ask.

To be sure, things get busy. I may not always remember a family’s choice; please, don’t hesitate to correct me if I get it wrong. We welcome open, constructive communication, on our team and with our families.

And sometimes, it’s the simplest things that keep that open dialogue going.

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