People First Vs Identity First Language
Sometimes I’m an overthinker. I think I’m ok with that..maybe…should I be? Yes…no…yes.
Or is it….
In a world with social media and platforms of every nature, it’s easy to get lost in what we should and shouldn’t share….what we should and shouldn’t say…and how we should and shouldn’t say it.
I’ve started following more and more adults with autism….autistic adults. In raising Lucas, I realized quickly that he is my best teacher. So, I’ve been looking to adults with autism more and more to see their perspectives. I have a lot to learn…and unlearn. It’s easy to get caught between the worlds of professionals, parents, and actual autistics. It feels like “monkey in the middle” sometimes. Should I say that? Should I share that? Should I change my whole blog name- will it be misinterpreted?
Things I didn’t know were “things” are in fact important to many:
- People First Language vs Identity First Language
- “Autism Parents” instead of just parents.
- Puzzle Pieces
- Vulnerability vs disrespecting your child’s privacy.
This is what I’ve settled on, for now. It may change over time and that’s ok. For me- and my family- I think we are doing the best we can. I plan to share and keep things that our family holds as important as long as it has been through this criteria:
- Is it being shared out of love or for attention?
- Is the purpose to help others or for financial gain?
- Could this harm someone, including our own children…one day?
Things I’ve felt the need to explain….to keep…to fix…or to modify:
- The blog name: Ausome Speech. Yes, this one was created out of love. In fact, my son made the name. It was intended to be Neurodiversity-Affirming and embracing of Autistic strengths. Overall, I decided to keep it because: my son created it, it’s fairly easy to find and remember, and the intentions were good.
- The puzzle piece. I’ll be perfectly honest: I had no idea some folks found puzzle pieces offensive. They are all over the place. In our family, they hold a deeper meaning: the puzzle piece came before the diagnosis. It was our one and only fundraiser: an adoption puzzle. We found that our little mismatched puzzle fit together so nicely. A friend later pointed out the irony of the puzzle piece and autism. Some adults with autism find the pieces offensive because it leans towards trying to “cure” autistic people when they don’t want or need to be cured. As a mama, I have felt this firmly. It’s affected my decisions to stop seeing certain therapists, to avoid certain schools, and to walk away from certain treatments. “You’re not treating his autism!” -someone “I never said I wanted to treat his autism…” Me
- I’ll look back at the puzzle piece as something that was put together with love. However, I think it’s time for me to listen to autistic adults and find a different way to represent the purpose here. This will take a little bit of time for me to undo, redo, and pay to fix the legos and headers…but I want the autism community to know that I am listening.
- Autism Parents: I readily admit to using the hashtag #autismmom. I think I used it for the first time after reading about identity first language. It felt icky, but it also seemed to connect me to other parents in a way that was helpful for both of us. This is something that just never felt quite right. I’m first-and foremost- a Mom. Just a mom. I’ve recently started removing this tag from things I share. I don’t think there is intentional harm in being an “autism parent”, but if it makes autistic adults uncomfortable, I’m listening. There are other ways for me to connect to parents for love and support. I sense that autistic adults see “autism parents” as gripers…..complaining about meltdowns and such. I have a couple of thoughts on that: 1) There are always going to be parents complaining about their kids. Almost all of us do get frustrated at times. 2) Sharing information that your child wouldn’t want someone else to read is something we should triple think through before we type. There is a fine line in the vulnerability that helps others and shaming our children for things they cannot control or may need help with. That’s something I’ll have to be mindful of each and every time I write. I may have made some mistakes with this one….and I may do that again. Hopefully, the overall intention of helping others will not come at the expense of anyone else.
- People First Language: this one is really hard for me because it was drilled into my head in both undergraduate and graduate school. I championed it as Lucas’s mother. Put him first….not the autism. Then, I learned that a lot of adults want to be called autistic adults. I wouldn’t have learned this if I hadn’t been paying attention. Many professionals, parents, and community folks are starting to use these interchangeably. Autistic child and child with autism. I think that’s where I’ve settled, for now. First and foremost, I want to help instill that autism is not this monster…and disabilities aren’t something we need to hide. Second, Lucas can’t quite tell me how he feels about this…so I’m testing the waters a little bit. Lastly, if someone else has a clear understanding of what they want to be referred to, that’s what we need to go with. It just makes sense.
I’d like to offer up my thanks to the autistic adults out there who are patiently navigating this. To those who are helping folks like me learn and unlearn so that we can do a better job of parenting and working with our students. Thanks for teaching us.
I’ve gone back and forth on sharing bits and pieces of our family for years…often second guessing this decision. Ultimately, I’ve settled on this (for now):
- Vulnerability is a gift to others.
- There are ways to share true struggles and triumphs without shaming.
- The purpose of what is shared here is not financial gain. There aren’t advertisements. There are no checks coming in from clicks or shares. I do have a store, but it serves to cover my time and expenses in creating therapy resources (if that).
- I hope that sharing our story will offer hope to others. I hope we can reduce or remove the “stigma” of autism being this monster.
- We think Autism is a unique and wonderful thing….and we hope there is no “cure”.
So, there will be some changes coming- hopefully to be more sensitive and inclusive.