CN, TW: this post contains a story of ableism that recently occurred with another parent regarding my daughter's Autism diagnosis. If you would prefer not to read that, please skip paragraphs 3-8. Paragraph 11 contains oblique references to some common ABA type statements that are made about Autistic kids.
When Andrea shared with me a preview link to the new Autism Awareness wrap from Jamberry, I flinched. I flinched hard. The wrap features the puzzle piece symbol, which is the international symbol for Autism. It's also a symbol that many neurodiversity and Autism advocates have been trying to change for years.
Last week, I was with my younger child at her physical therapy appointment. The way the therapy office is set up, there's a sitting area in one corner of the gym; parents can watch their kids throughout therapy, and are there if the therapists or kids need them, but aren't necessarily part of the therapy. This other parent was talking to her child's therapist as her child went through his PT, discussing why she'd never pursued a particular diagnosis for her son's physical difficulties. The therapist was suggesting that, as her son would be entering kindergarten in the fall, a diagnosis might benefit him at school.
After some internal debate, I decided to offer my opinion; I apologized for listening, but said that I agreed with the therapist; I said that my daughter had received a diagnosis the previous year, and what we were able to access through the school dramatically changed.
For better or worse, parents bond over their kids. This parent and I got into a conversation about the services available in each of our school districts, what we worried about for kindergarten, and how much we loved the physical therapy office that our kids go to. She asked what my daughter's diagnosis was, and I felt comfortable sharing that she is autistic.
Which is when all that happy camaraderie fell apart.
"Well," the other parent said, "At least she seems really high-functioning."
It felt like I'd been slapped. I didn't know what to say. I withdrew, my hands freezing cold and my cheeks bright, trying not to cry. After a moment, I managed to mutter out something about how there are trade offs, you can't tell that, that's not something people say anymore, she's herself, not a functioning label. I remember thanking the powers that be that my daughter was all the way across the room, and didn't hear this woman speaking.
"Well," the other parent said, maybe realizing that I'd been hurt but not knowing how to correct it? "I mean, she seems really verbal."
Because verbal communication is the only communication that matters, right? Because neurotypical people don't talk with bodies and hands and our entire selves all the time? Because NT people have huge amounts of their conversations with their facial expressions and tones and gestures, but parents of Autistic kids are told that if the kids don't use their words, then their parents should ignore them.
This is what the puzzle piece does. It makes Autism into something that needs to be solved, tells the world that it's okay to sort my daughter into one of two boxes - she's an edge piece or a center piece - and completely disregards the complexity of her.
I'm not a parent who likes to go on about how hard it is to be the parent of an Autistic kid. My child is not a burden. When we got her diagnosis, it didn't turn her into a puzzle; it gave us a framework for understanding her behaviors and needs, and has improve our relationship to her. It has helped us to support her for who she is, to understand her unique identity and personal needs and intense sensations. It helps me to advocate for her, to make sure that the people around her understand our choices in supporting her. It gives me the ability to say things like the first person who says quiet hands to my daughter will feel my rage descend upon them like the flaming heat of ten thousand exploding suns, and before you assume that she's just being disobedient, I need you to remember that she is a sensory seeker, and consider if there's something causing disregulation that needs to be addressed before she can hear you.
One of the common refrains I hear in marginalized communities, from trans* communities to disabled communities, is "nothing about us without us." That was my first thought when I saw the new wrap from Jamberry. I wondered if they'd reached out to an Autistic or neurodiverse graphic designer to get ideas for the wrap. I wondered if it had occurred to them that they should.
I bought several sheets of last year's AA wrap, not specifically to support the charity that Jamberry donates to (which is NOT Autism Speaks, which makes me very happy), but because I dread the IEP meetings I attend for my daughter. Her team is amazing, but there's always the potential that I'm going to have to go all Dragon Mom, and I need to be prepped and ready to tear into someone. It takes energy to go there, and I used to do my nails in the AA wraps to remind myself who I was fighting for and why.
Knowing this change was coming, I bought an extra sheet of last year's wrap to tide me over. Knowing that the vast majority of Autistic people I talk to dislike the puzzle symbol, I don't feel right supporting it or using it as my energy for things important to my daughter.
Jamberry, I hope that you make a better choice next year.