Autistic Voices: This Was Never About ABA

When we found out Santana is Autistic one of the first things I did was educate myself. However, the biggest source of that information comes from people who are Actually Autistic. More specifically Black Autistics. One of the people who I have found invaluable has been Tiffany Hammond of “Fidgets and Fries.” I always make sure to mention that even though I share our journey and experiences it’s also important for me to amplify Black Autistic Voices. It’s important for us to always remember that as parents of Autistic kids we should be listening to the experiences of those who are living it. I have asked Tiffany permission to share her words on an important topic, ABA therapy.

This was never about ABA.

Ever.

People in the beginning of my “rise” in social media advocacy would always ask me to make posts about ABA, I declined. They would ask for my thoughts. I declined.

“How did I feel about it?” “What way do you lean?”

They couldn’t tell from my posts. They assumed one way. Then another day, they assumed another.

I didn’t like ABA posts not because they are controversial. Not because they are hot button issues that bring anger to my inbox, cause me pain with the words many speak my way or in the direction of my children.

That stuff does hurt.

But I didn’t talk about ABA because I was tired of my life being governed by theirs. I am tired of my life being controlled by whiteness to the point that I am bound by what it is I must speak about in my advocacy of self, for my children, and what I know to be good for those just like us.

Black advocates can’t play by the same rules as white ones. But alas, I must talk about something that I don’t want to talk about because I know doing so won’t move anything the way I need it to move. I’m taking heavy swings and these white advocates are still bunting.

We are governed by their lives in all ways, even in these spaces. So when I eventually spoke on ABA, it wasn’t because I wanted to, it was because I HAD to. It was because I needed to present my life in a way that would make sense to them because they weren’t seeing me any other way I was telling my story. They weren’t seeing my children. Me speaking on ABA in the way that I did was yet another way I had to cut myself open because the only they see Black pain is through Black trauma and Black bodies lying in streets. They have to see that we bleed in order for them to get it.

And even then, they still do not get it. This was NEVER about ABA.

This was about me having to retell the most painful experiences of my life as a Black person raising Black children in a society that abuses this skin in every system that we must go through to survive in this world because y’all cannot just believe us when we tell you straight up that what we go through is wrong.

So we have to keep telling you. Over and over and over again. In new ways. With deeper cuts. Showing you more wounds. More scars. Maybe you will see us now. Maybe you will get it now. And you don’t.

The retelling of the many intersections we face, the traumas we endure, the choices we have to make, the lessons we have to learn as young children, all of it…was NEVER about ABA. It was never about the justification of ABA. It was never about ABA period.

It was about my attempting to connect our story to the only thing that so many of you care about, and that is yourselves. You cannot see past your own noses. So if we speak to something that you do care about, which is ABA, maybe, just maybe you will start to see us as well.

But, you don’t.

Don’t ask me if I feel ABA is harmful. I am not answering that anymore. I am not using all these words for you to waste my time with, “I just want to know are you saying you agree with ABA or not?”

Exit stage left. We aren’t doing this anymore. I am not here to tell you ABA isn’t harmful. It can be. It is.

I have stated as such. But yet, I am considered to be “pro-ABA” because my stance echoes the complexities of my existence. I exist in the gray. And you prefer the binary.

I no longer hold the patience required to answer questions I have either already answered or you have no business asking.

Am I pro-ABA or anti-ABA? That isn’t the question. It doesn’t matter what I think or feel about ABA. It matters that my life is a series of “bad or ‘not as bad’” paradigms.

It matters that I am living a life governed by another which means that there is little that I participate in that is harmless to me. Including having to write this essay. And yet, y’all will still flex your privilege to close your eyes to my plight. Your ears to my voice. You turn away from our gaze and yet we sear under yours.

I am not just Autistic.

I am Black. And I am Black, FIRST.

And to much of society, I am Black, ONLY.

With skin I can’t scrub, can’t hide, can’t tuck away, can’t mask…I can’t pretend to be something else. I don’t experience disability as white disabled people do and y’all don’t get that. Because disabled experiences start and stop with you. They begin and end with you.

ABA is not the problem.

It is a symptom.

Of a society that is compliant based and hellbent on maintaining a hierarchy of bodies, it deems worthy and unworthy. We were always meant to be at the bottom of the pile, regardless of disability. From the moment we set toes to dirt on this land, we were never in total control of ourselves. You think because we share fountains and own homes in your neighborhoods we have equal footing?

Y’all haven’t a clue what equality is. You damn sure haven’t a clue what equity is. And this isn’t a class, Google is free, this will not be energy I expend in this area.

Ableism is not a standalone system, nor did it beget racism, it is a mechanism of racism. And as long as racism exists, you will always have ableism. The ableism you know and face today, was born of the racism Black and brown bodies faced yesterday. Your fight to eradicate ABA in its entirety will fail not only because it is a symptom of a compliant based society, but also because it is a symptom of a racist, compliant based society. It will fail because you are focusing your efforts on removing the strongest means by which Black bodies survive in this society, behaviorism, which will leave us more vulnerable than we already are, and are doing jack shit about the systems that keep us at a disadvantage, harm us, and birthed ABA in the first place.

This isn’t about liking or not liking ABA, this isn’t about ABA being abusive or not being abusive, this is about the subjugation of our person and how every single day, for generation after generation, we have taught ourselves and each other how to survive the dangers and violences of these systems. Regardless of disability. We either learn to conform or struggle to survive. In more ways than one. It’s so ingrained in us that we don’t see that this exhaustion we feel is not normal. It should not be normal. But for so many of us, it kept us safe. It has kept us housed, kept us fed, kept us clothed, kept the lights on, took care of our families, afforded us the opportunity to live in the “right areas” with the “right schools,” and all we have to do is shelve who we are for 40 hours a week, look the part, and keep our heads low and out of trouble.

We don’t often have the privilege to just up and toss aside something that does what most of us have been put through our whole lives regardless of neurotype because our lives are governed by whiteness.

So, when we have children, we have to teach them what was taught to us. Because that is how it is. Because that is how we make it. That is how we survive. And it’s not right, and it hurts. To know that you can’t even be who you are because you might scare someone. To know that you have to work twice as hard and still might not even be recognized. To know that your life is in the shadow of another’s. It feels like your own, but it’s never really your own.

And so when we lay ourselves bare in this way, some of you want to either outright deny the existence of your experiences and others want to assert that we want to “compare traumas” as a means to shut down our conversation because you would much rather divert the attention back towards themselves rather than deal with the truth that lives outside their own exist.

I mean, why else would they make mention of themselves in experiences that have nothing to do with them? I am not comparing my trauma to theirs, I am explaining my own, how simplistic discussions surrounding ABA have been, how we are not focused on the right things, and that eradicating something that has served as a tool of safety and survival for generations, regardless of what you want to call it, and not addressing why it’s needed in the first place solves nothing, is what I am doing.

This has absolutely nothing to do with you. Don’t make it about you. It’s about us. For once. Let it be about us. Can my experiences be applicable to persons who aren’t Black? Yes, namely nonspeakers and those with high support needs and their families. But this essay is specifically about Black people. It’s written to white people, but it’s about white people. Perhaps, this is what has you confused?

Y’all good? Let’s continue.

We have to navigate these violent systems, live lives by the might of whiteness, protect ourselves from whiteness, while also acclimating to whiteness.

How do y’all think we do that? By modulating, regulating, and modifying our behavior.

How do y’all think that makes us feel? Like crap.

And I don’t want to spend the time I’m spending writing an essay on this. I just don’t. Because it’s taking away from the very real work I feel that we should be focusing on, and that is dismantling the systems that birth ABA in the first place. I never wanted to focus on ABA because that has always been a leaf to me. And I am all about roots.

But even how I show up in these spaces is controlled by others. I don’t want to talk about ABA and yet here I am, writing a damn essay about it, after a series of long-ass posts about it, and several IG lives on it. I wanted a way to talk about my struggles and introduce them in a way that I hoped everyone would be paying attention to. Everyone is talking about ABA, but doing it in a very lazy way. So, I figured I would take that on, impart some nuance, and hope that this would spread to other areas.

I wanted them to see this situation through my lens because I always have to view life through theirs. And mine. And then maybe they could also see how much the structure of ABA is systemic, woven into every fabric of society because it is born of a society that demands compliance. But not just compliance of all people. Just…certain bodies. Of certain status. Of certain worth. And just maybe they would start to see that the ableism they face isn’t something that just materialized, but is a mechanism of racism. And will always be a mechanism of racism, always existing, and as long as racism does, so will ableism. They will know no freedom if we know no liberation.

My hope was that this would be an understanding that would grow to other areas. That they would finally understand that ABA is systemic, a symptom, and of a racist, capitalist society, and this would inspire and induce the change that we need to push us in the right direction. It wasn’t enough. And it didn’t.

Don’t get me wrong, I am seeing far more nuanced posts than I have ever seen, that has honestly stunned me. I got tired of taking the brunt of the hits on this. But I am concerned about the shift that the group is taking. It appears many are now focusing on harm reduction, alternatives, parental resources, etc. all things related to and/or surrounding the structure of ABA. This, I do not disagree with per se…however, this does absolutely nothing for those when they leave the therapy centers. We still live within a society that demands so much from us in order to survive and exist.

No amount of conscious parenting, discipline, harm reduction, etc. will change that, nor will it actually change what it is you’re actually having to teach the child to do if they’re still living within a racist, compliant based society, it only changes the method by which you’re teaching it. And being Black and who has been taught in all the ways ABA has taught me (yes, I was in ABA), even the “gentle” ways are still harmful…but they still saved me and kept me safe. And I didn’t keep my children safe because I listened to strangers on the internet with no children tell me I would be abusing my children with ABA when their very existence itself abuses them on a regular basis.

We don’t have the luxury to look at just one thing. Just one leaf, and that’s it. Tree gotta whole lotta leaves. Why just that one? That’s a privilege we just don’t know. I don’t know what to do with “ABA is abuse.” Don’t come to me with that.

Let’s get into the really hard to hear stuff: ABA is only abusive because it impacts white people.

Doesn’t matter that for generations we have been explaining time and time and time again how horrible it is to exist under the foot of whiteness. How we have to modify our being just to survive. How we have to be a “good ol’ boy” and stay in line to keep out of trouble. They still didn’t listen. Still didn’t hear us. Not when we told us they denied us jobs. Denied us housing. Denied us healthcare. Denied us food. Assigned disability to us because we behaved differently. Pumped us full of meds. Hospitalized us. Incarcerated us. This was the norm for us. So much so that we have had to teach future generations how to modify their behavior to reduce harm and to survive.

This is the result of a racist, capitalist, compliant based society and white people didn’t give a damn that we told them it hurt to do everything we had to do to blend in. And even then it still didn’t always work.

Enter ABA, which eventually started to touch the lives of white children and their families in the way that behaviorism has always touched ours…now it’s abusive. Now, it’s harmful.

Now, it hurts, but white people didn’t see that before. It didn’t impact them as much. Now, it does. And they still cannot see the hurt that we feel beyond ABA and beyond the hurt that they feel. Only pain that matters is their own. Not all, but many…and it’s many advocates, honestly.

I mentioned earlier that this essay could be applicable to high support needs individuals and nonspeakers who were white and their families, I want to expand further on that right now. These individuals and their families find fellowship and kinship with me more than they do white advocates and it’s often because I am Black that they do so. It is because I am speaking of my experiences as being Black that they see themselves in me. In a compliant based society, tossing race aside for a moment, those who are least able to control their bodies are considered less desirable, less worthy, less capable, more dangerous to themselves and others. They feel safe in my stories because they see their lives in mine. I am better able to explain those situations of being controlled by other bodies, being governed by lives considered more worthy, dissecting white gaze and what that means. They feel seen in my trauma because I can explain theirs better than other white advocates who spend very little time getting to know lives outside of their own do.

Whiteness harms white people, and they are getting a lesson in this…hard. Our lives won’t line up perfectly, we won’t be able to see eye to eye on everything but I am better able to understand the pain they feel on issues like ABA and they are better able to understand the pain I feel as well.

Black Autistic Voices Matter

Tiffany is the voice behind Fidgets and Fries. An Autistic mother, advocate, and storyteller who uses her personal experiences with Autism and parenting two Autistic boys to guide others on their journey. I am sharing her Patreon and cash app information for those who want to support the work she does as an Autistic person.

PayPal: @fidgetsandfries PayPal.Me/fidgetsandfries

Venmo: @fidgetsandfries
https://www.patreon.com/tiffanyhammond

 
Kish

Posted By: Kisha Gulley · In: Autism, Featured