Identity-First or Person-First… and what does that even mean?

My daughter is autistic (identity-first) but I say that I have ADHD (person-first). Does it really matter? We think it does. But why?

Before I get too far along, I’m just going to tell you to ALWAYS ask the individual about their own preferences. Believe me, it’ll matter to them, too, so ask, listen, and then honor their choice.

But again, what’s the difference?

The answer’s complicated. Views have shifted over time and I can’t speak for everyone, but here are a few arguments and reasons for word choices and a reminder of why words really do matter.

Identity-First
My daughter prefers to think of herself as autistic. Autism shapes and impacts every single part of who she is and the way she perceives the world. She has an autistic brain and there is no way to alter her brain and make it neurotypical, even if she wanted to (which she says she does, but just for one day so she could see what it would be like to be neurotypical). To her, saying she “has autism” is like saying she “has the flu” or “has a broken arm”– a temporary medical condition in need of treatment. A direct quote from her, “Why would anyone say I haveautism like it’s a virus? I don’t need to be cured!” So, that’s my girl. She IS autistic. Actually, we often say she’s “ausometistic” [awesome + autistic] ‘cause she’s that too.

Trouble is, she wants me to use identity-first language too, which in theory, I’m all for. But that’s the problem with ADHD– it stands for Attention Deficit Hyperactivity Disorder. I can’t say I am ADHD. I’ve tried saying I am ADHT (for Attention Deficit Hyperactive Type) but then people don’t know what I mean.

It kind of sucks, by the way, to have both the words deficit AND disorder attached to your identity. Sometimes I’m mad that I wasn’t diagnosed with ADHD as a kid. A thorough understanding of ADHD traits might have saved me from some really horrible experiences (and I’m talking personal safety situations, not just being disorganized). But on the other hand I think, at least I wasn’t a 12 year-old girl told by my parents, teachers, and doctors that I had a brain disorder. Specifically, a brain disorder marked so strongly by DEFICITS that they are theactualname of the disorder. A brain disorder that makes all the normal planning, sequencing, organizing, follow-through, and emotional whirlwind of being human sooooo much harder than it is for the rest of my friends. Sheesh… we’ve really got to normalize and de-pathologize neurodiversity– being in middle school is hard enough– why make kids feel even worse by telling them they have a brain disorder?

That’s the cool thing about the word Autism and being Autistic– it is it’s own thing– it doesn’t come with negative words like deficit and disorder, and it’s probably a big part of why autistic people choose it over “having ASD” (the D of course being for Disorder). My friends get to say they “are dyslexic” too, not that they “have dyslexia”. ADHD needs a new name– something like “Hyper Alert and Stimulation Sensitive” (HASS) or “Super Alert and Stimulation Aware” so we can say “I am SASA” or something like that. *Trying really hard to think of some way to make SASSY work… “Super Alert and Stimulation Aware Y’erwelcome”?* Right now, my daughter wants me to say ADHD-tistic, which for her, I can get behind. Other people say “I’m an ADHDr,” which works too..

Person-First
Person-First is the traditional way most people have been taught to talk about disabilities. Notice my wording here- I’m not sure this way was actually preferred by the disabled themselves, or if it is a way of spinning things to make able-people more comfortable talking about disabilities. Either way, this model focuses on the man, woman, or child first, not the disability or the diagnosis– thus, “He has autism spectrum disorder,” or “She is a young child with autism.”

Since neurodivergence is diagnosed by the medical community, neurodivergent conditions like autism, ADHD, dyslexia, and tourettes are considered syndromes, disorders, and deficiencies. So, rather than focusing on the flaw, it was thought that focusing on the human or humanity would be preferable. I can see the logic and this was the common phrasing used for decades. If you listen to Temple Grandin or other older neurodivergent speakers, they most often use person-first language, WHICH IS PERFECTLY FINE!! It is their preference, and as I’ve said, they get to decide how to talk about themselves!!

Neuro-Inclusive Trends
More recently, however, people identifying with the neurodiversity movement, have leaned away from person-first language. The thinking is that since neurodivergent brains aren’t actually broken versions of neurotypical brains, we shouldn’t embrace a deficit-based model. They argue that the phrasing “person with autism” was adopted by neurotypical doctors who pathologized the condition and sought to treat, cure, or extinguish it without any input from the autistic individuals themselves. Currently there is a huge movement of Autistic self-advocates that rejects organizations (often run by non-autistics) seeking to heal or prevent autism. The self-advocates share their childhood trauma decrying the abuse of extinguishing autistic behaviors through Applied Behavior Analysis (ABA). They also renounce the puzzle piece symbol– they are not puzzles to be solved nor are they missing pieces. In place of the outdated attitudes that had been formed without autistic input, the advocates want to see actually autistic leaders running organizations dedicated to improving autistic quality of life, educating neurotypicals about autistic needs, and embracing the rainbow infinity symbol to represent the full spectrum of autism and neurodiversity.

I admit that as a non-autistic I hadn’t really given any of this much thought. But now, after reading articles and blogs written by “actually autistic” people, I feel really uncomfortable every time I see a puzzle piece symbol for Autism. I wonder what that person would think they knew that the pin, sweatshirt, or hat they are wearing might be causing pain to the very people they so proudly proclaim to support?

There is a lot to learn and a lot of language to reexamine. The bright side is autistics ARE being heard and ARE finally being included in decisions that directly impact them thanks to the work of non-profits like ASAN (Autistic Self Advocacy Network) and autistic self advocates like the authors, speakers, and influencers demanding to be heard. Change is happening. We just need to keep questioning and keep listening.

Words matter. A LOT!

One shift I love and am doing my best to incorporate into my own speech is replacing the term “diagnosed” with the word “identified”. This is a terrific example of how a single word has such impact and guides our future thoughts and beliefs.

• Diagnoses are applied to problems or malfunctions. A mechanic will run diagnostics on your car to determine what needs to be repaired. A doctor who diagnoses you is saying, “I see what’s wrong with you. This is how to fix it.”

• Identifications involve recognition. A zoologist identifies and classifies new species. You show identification to board the right plane or enter a venue. A doctor who recognizes and identifies your brian type is saying, “I see you. You belong here.”

So which introduction to neurodivergence would you choose? The one where your brain is malfunctioning but can’t be fixed, or the one that says your brain’s like this and you belong. Just one word can change a child’s entire life.

So yeah. Your words matter. Please choose them wisely.