6 Comments

Thank you for sharing this. I don't know enough about people's experiences of ABA, and I definitely don't know anywhere near enough about the Black autistic experience. I both want and need to learn more, so I'll hang around if that's OK?

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Wowsers!!! This is deep and so accurate!!! I also think that SM brings out the disgruntled. My autistic friends in real life who are loved, understood, and accepted have no need for the pack mentality of a fb group to validate their opinions. So their voices aren't heard and/or drowned out. As a parent I want to hear from the autistic adults that loved their parents, felt seen.

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As always, I so much appreciate your point of view. I don't understand the audacity of someone to say to another that the first person's lived experience wasn't actually their lived experience. Excuse me?? Do you live in my body? Then you don't know. I have raised an Autistic child, and we go with what works, until it doesn't work anymore, and then we try something else. There isn't only one answer or "right" way. Thanks for pointing that out.....again. Keep doing what you do.

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It’s because of your words that I eventually let my son receive ABA and honestly I wished I had started a lil earlier. I worked in ABA for over a decade when I was in my 20’s/30’s and quit after being permanently disabled during a crisis with one of the teens I was working with. He didn’t mean to hurt me and he felt so awful. And I eventually stopped the work because of the harm I witnessed… I saw the benefit also… maybe benefit is the right word… maybe necessity is the right word… it felt too big to challenge, it felt like for all of the necessity, the pit of need got deeper and deeper. Not because of the kids and their behavior but because of the structures they are forced to navigate… I couldn’t, i didn’t even know how to help them fight that fight… leaving felt like the right thing… I didn’t know that almost 20 years later I’d have a son who is Autistic… when I got on socials to see what the community was currently saying, it was culture shock and I put off putting my son in ABA. I agreed to work with a BCBA to do parent trainings over zoom, but I kept them at that distance for a year while I figured out if I could trust them with my kid… I was privileged in so many ways but one of the biggest privilege had was knowing ABA inside and out… I could tell them exactly what I would and would not subject my child to… and it’s still not perfect, but I can tell you my child experienced more trauma at school than he has in clinic… I remember before I finally decided, “ok, we really need help, I’m gonna let them have 1:1 time with him”, I read something you said, basically that it was everywhere, in all the services etc… and I got so mad. I got so mad that I let some strangers scare me away from one of the few services that was actually available to my child. And obviously you were right, you are right, it’s everywhere. My son likes his ABA team. The BCBA and supervisor have been the same for the last 4 years now and have helped us through some really difficult times. I push back on them and they let me, I speak their language so they know I know what I’m talking about… and this is what I want for families, I want them to speak ABA. I want them to speak OT, speak SLP, speak Academics etc… so when we are our kids are in these impossible situations with these “experts” we have the tools we need to direct the services. It should be us and the our kids or whoever is guiding their care after us… not the institutions.

My son would likely not survive with ABA. And for sure, plenty of folks could, but not everyone could. We can make sure it is as kind as can be. The world sadly, is not kind to our kids or disabled folks particularly Black disabled folks for sure.

I appreciate you so much. You’re literally a voice in my head on the hardest days. Thank you THANK YOU

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Nov 2·edited Nov 2

I’ve found at times that some allistic-created resources have been really helpful for me in parenting my youngest child, who is autistic. But that’s unacceptable to say in some circles, especially on autism twitter. “Listen to autistic voices!!!” Well, I do, because; plot twist - I’m autistic too. But I’m allowed to listen to non-autistic voices too. Social media makes everything so polarised.

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This is powerful and nuanced. I’ve never experienced ABA, and heard only negative things about it in the online autism community.

However.

I’m a late-diagnosed autistic and extremely high masking (at least until autistic burnout took me down). As I learned about masking (and that I’d been doing it unconsciously since I was a child), I realized something similar to you, I think: my masking has hurt me in many ways, but I wouldn’t have accomplished so much or had the chance to positively affect other people’s lives if I hadn’t learned how to mask so well.

Thank you for eloquently sharing your experience.

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