Category Archives: ABA

tools vs. “cures”

TW: ABA, CBT, interventions, behavioralism, fake “cures”, restraints, institutionalization, murder of autistic youth, functioning labels

a tool is something that you control, either on your own or in conjunction with others, consensually.

a cure (including “cures” that don’t work) is a solution to a problem. it’s goal is to make whatever the presumed problem is – in this case, “autism” – go away. a cure can be chosen, but also, is frequently prescribed, if not forced or coerced.

given that autism isn’t a problem (and more specifically, a disease, injury, or despite the nomenclature, a “disorder”), but a type of neurology (as well as the social context surrounding that neurology), all “cures” for autism are in the “doesn’t work” category. some so-called “cures” may be helpful in relation to our support needs (or in the case of things like ABA, definitely not helpful) as disabled people – but again, that’s a tool, not a cure.

understanding the difference between the two is really important, especially for disabled people, as well as those who provide support for us. consider:

  • ABA: “cure”
  • toxic autism “remedies”: “cure”
  • CBT: both “cure” and tool (it depends on usage and context)
  • self-regulation: tool
  • interests: tool
  • music therapy: both tool and “cure” (although depending on the practictioner, neurological support is probably more appropriate than cure)
  • occupational therapy (OT): tool, solution/support, “cure” (especially if the OT is focused on “fixing stims”, rather than self-regulation.)

there’s a lot of bad information (and even worse practices) that come down to thinking that things that we do naturally, need to be fixed or “cured”. including in ways that can be trauma-inducing, even fatal.

this gets back to the need for self-advocacy. more specifically, support needs, as well as the ability to make our own choices about what those supports are.

consider this statement:

“”High functioning” is used to deny support.

“Low functioning” is used to deny agency.”

our support needs vary from situation to situation, over time.

the common denominator though is tools, as opposed to cures.

this is a huge issue for us, and could stand to undergo a fundamental shift in thinking. especially among allistic, ableist professionals who are providing education and support for us, but also, among each other in our community at times.

here’s to making that happen. ✊🏽

Alternatives to ABA and behavioralism

This is a first draft. (Yes, I’m trying to set something off here.) I’m especially looking for feedback from Autistics, especially ones who went through ABA or ABA-like programs in the school system. (I’m in my 50s. I went through a whole bunch of behavioralist, ABA-like experiences, including assessment, but this was before inclusion of autistic children was mandated as part of the U.S. school system’s requirements.) “Play nice”, don’t flame me or others, but please feel free to leave comments and feedback.

For Autistic students:

— You have a right to play alone.

— You have a right to your interests.

— You have a right to say “no”, and be taken seriously.

— You have a right to your stims.

— You have a right to not make eye contact.

— You have a right to move your body.

— You have right to sit where you want, and that’s yours.

— You have a right to learn.

— You have a right not to learn.

— You have a right to make mistakes.

— You have a right not to trust people.

— You have a right to interact with who you want.

— You have a right to make friends of your own choosing.

— You have a right to respect.

— You have a right to self-determination.

— You have a right to self-advocacy.

— If nobody understands what you’re asking for, find a way to tell them. (This may take some time.)

— If doing something hurts, try to find something that doesn’t hurt that works just as well. (It’s ok if you can’t.)

— If you make a mistake and people get mad, ask why in whatever way is safe, if possible. (It’s ok to make your own decisions.)

— People say and do things for reasons other than you might think. Observe, learn, and if possible, ask. (You have a right to not respond.)

For parents:

Embrace the child who is front of you, not the one that you hoped for.

Reject ABA, both at a therapist’s office or center, and at home. Being assessed and aggressed upon by teachers messed me up, but not as half as much as having compliance forced on me at home did.  (This was before ABA was formalized as school-age “intervention” under IDEA, otherwise they probably would’ve subjected me to that as well, and fucked me up even more.)

— Advocate for your child. Parent and teacher-led advocacy is one of the things that helped me break free – not from autism, but from people who kept trying to “fix” me. Presume competence.

— If your child has affirming teachers who they have rapport with – let your child know that you support those teachers, and that you disapprove of the ones that deny your child’s humanity.

— Interests aren’t talents or career paths, necessarily. They’re interests, which is enough on its own. (If they wind up being career paths or long-term pursuits, that’s fine too.)

Never demand quiet hands. (This is part of what messed me up.) Suppressing stims, echolalia and interests is abusive. If you need a time out for yourself, take it.

Aggressive behavior is happening for a reason. Center your child’s needs, not their behaviors.

— Read the section for teachers below; it’s relevant to parenting as well.

For teachers:

— Dump ABA, including the “good” ABA. ABA is conversion therapy for autistics. Torturing children for being trans or gay isn’t acceptable, torturing us for being autistic shouldn’t be, either.

— Allow students to find their own interests.

— Don’t suppress student’s stims.

Explosive behavior (hitting, kicking) is communication and self-regulation. Find out what is being said.

— If students want to play alone, let them.

— Ask students about their interests, *gently*.

— Create a welcoming environment, full of things to explore and learn about.

— Create an environment that’s focused on learning.

— What you might think is important isn’t necessarily the same as what your students think is important.

— Don’t force gender expression. Let students express themselves in ways that work for them.

— If a student is swinging their arms, and not seriously injuring themselves: take a step back.

— No restraints! Restraints are violence.

— Every Autistic student is different.

— Every Autistic student is valid.

Erasure

Trigger warning: long read, anger, suicidality, ABA, trauma, functioning labels

This pattern: adaptive skill -> “intelligent” -> high-functioning. wtf.

Further, this pattern: need for support -> “lack” -> low-functioning. Again: wtf.

First off: it’s ableist. That’s a given. Functioning labels, intelligence and correlating adaptability to both (and its respective presumed opposites) are *all* flawed concepts.

That said, I’d like to talk about how this makes no sense. Not just because functioning labels are ableist, but how the entire pattern doesn’t make any sense.

A *lot* of being viewed as high-functioning is about masking, and possibly having some particular set of skills or talents that are viewed as “humanizing” (and under capitalism, valuable). I can do both (even if it’s sending me careening towards a meltdown while I do it), up to a point — then things fall apart. So, rhetorically speaking: what does that make me? It is virtually impossible to memorize every possible social interaction; even if some hypothetical person did so, new ones emerge regularly, if not constantly. No amount of scanning a database of situations and scripted responses, and affective empathy (if needed) can fix that. It’s as if those of us who get viewed as “high functioning” (or in some mixed state of high and low functioning, if someone is bothering to pay attention) are the opposite of the “puzzle piece” metaphor; instead of being a neurotypical person trapped inside an autistic shell, we’re autistic people trapped in a learned/assimilated neurotypical one, to varying degrees.

A huge part of this is due to viewing typed or spoken communication as a key marker of ability and intelligence, if not proof of intelligence itself. When I’m non-speaking, does my ability shift? When I melt down? When I’m non-compliant? Is an IQ test an indicator of anything at all? (If you answer is “yes”, consider: even the official WAIS site encourages people to study in advance for testing. So then, what is being tested? If your answer is speed of response as an indicator of intelligence, perhaps consider that this concept is also flawed and ableist.) Also, the lived experience of having a skill or talent in society is predicated on a complex set of social skills, and it’s rare for accommodations to be made based entirely on that skill or talent, especially if you’re marginalized or oppressed. <sarcasm> So much for talent being mapped to functionality with the inference of social acceptance and inclusion! </sarcasm>

That said, there’s also the problem of viewing “low functioning” as lack rather than difference, of equating challenges and the need for support through the lens of intelligence, if not correlating lack of speech to lack of intelligence to lack of capability. Everything from the rather condescending ways people approach facilitated communication on an individual basis, without allowing for context, training or the person’s ability to type independently, to the ways that exhibiting high-functioning traits is equated with being high functioning at all times (or for that matter, with “not really being autistic”) are rooted in biased assumptions about functionality, both “high” and “low”.

Here’s a deeper problem that I see, especially for autistic youth: either through adversives or positive reinforcement, ABA presumes making an allistic child out of an autistic one. This alone is abuse, but on top of it, there’s a presumption that you’ll ditch that “fake child” (the autistic one) and become the real one (the made-up allistic one) that was buried under a pile of broken puzzle pieces. It’s very abuser-as-false-savior-like, as a “therapeutic” approach.

The problem with this is that it’s a lie. The real child is the autistic one, (TW: ABA, coercion, violence) the rest is forced and/or bribed compliance. Further, if you remember who you actually are in adolescence and adulthood, this creates a tension between your real self and the fake allistic one — which is masking at its most harmful. It can lead to forgetting who you are altogether, so you know that your mask isn’t real, but you can’t get back to who you are before you masked, either. This was coming up a lot on the #takethemaskoff campaign: autistic people kept saying “I’ve been masking for so long, I don’t even know who am anymore.” I know what it feels like to start to forget. It’s like someone is murdering you, and you get to watch. There’s masking out of necessity and survival, as well as masking to get your wants and needs met — then there’s masking that can be overcome, safely, or that could if someone hadn’t been subjected to years of forced compliance. (These categories aren’t necessarily mutually exclusive, either.) In my opinion this is part of why there’s a link between suicidality and masking.

There’s a variety of ways that ABA and directly ABA-like things are foisted upon autistics. I know that ABA as a practice has been around since the mid-1960s, and the first assessment questionnaires have been around since then as well; my parents used behavioralist techniques that map to ABA more than closely enough to parallel ABA itself. Why that is, I don’t know (although I have my guesses), all I know is that it was traumatizing as fuck, and once the “compliance protocol” was established, it *never* went way. Not just in childhood, period. I have had to unlearn “people tell you what to do, you do it”. It’s a life skills anti-pattern.

What helped me find modes of expression and learning in the school system was *NOT* being assessed, and the more negative aspects of what my parents did at home. What did were teachers that encouraged students to find their own ways of learning and communicating, instead of trying to force us into a box. I thrived under these teachers, and didn’t otherwise. (It’s probably important to point out here that I was frequently what now gets labeled as combative, non-compliant or passive otherwise.) By high school, I learned how to coast, until I was forced out for other reasons. This wasn’t just educational, it was inter-personal as well. I was literally rescued from some personal hell, assessment included, twice — only to fall back into hell until I left the school system altogether, and I have no intentions of forgetting that.

Perhaps what is flawed here is both the entire concept of intelligence in the first place, as a presumed indicator of cognition as well as ability, if not sentience — as well as the idea of “functioning” being a fixed state, that can only be deviated from by regression or “cure”. Both of these assumptions are dangerously ableist, if not eugenicist in their world-views. This is the sort of never-ending array of conundrums that Melanie Yergeau talks about — the frequent assumption is that someone is either too autistic or not autistic enough to self-advocate. This basically is a toxic worldview, and deserves to be challenged as a pernicious threat to our well-being and survival. Self-advocacy is communication, and non-compliance is a social skill, regardless of how we have been labeled, how we communicate and express ourselves, and what levels of support we need.

Quick update

I’ve been slow on posting for the past month because reasons, but here’s some things that I’m working on:

– Origins of ABA and its relation to LGBT conversion therapy

– The realities of being autistic in the U.S. school system

– The lack of diagnosis and subsequent public awareness of autistic women and people of color

– Shared realities and differences between the HSP and Autistic communities

– Lived experiences and realities of undiagnosed and diagnosis-suppressed autistics

There’s a bunch of content up there already, though. Feel free to have a look. 🙂 Thanks!

Queer/Trans Autisinal Intersect: an Autistic Neuroqueer Personifesto

The thing about the intersect of autism and queer/transness for me is that it’s all a blur, and has been since childhood, on a personal level. It’s *all* part of the same fabric of oppression, teasing it out in terms of what happened diagnostically is murky at best.

In childhood and through to my teens, I was weepy, angry, avoidant, aggressive, bookish, stimmy, social (but with the “wrong” gender), reclusive, and basically a queer happy mess, as long as people left me alone, which they most definitely did not. So then, i was a miserable queer mess, and they still didn’t leave me alone.

Both at school and in my sort-of-home, everything was an intervention, constantly, from the moment I showed up the first day of school to the moment I left the school system when i was 15. Autism, queerness, transness, problem behavior, asocial behavior, all the same tapestry of “stop doing that”.

That said, they did all sorts of soft and hard intervention-like things to me, back when ABA was just starting to get off the ground. “Stop being queer/trans” things. “We’re testing your ability to match faces to emotions” things. Rorschach things. EEG things. “The tests are to screen for your mother’s neurological condition, but only you get tested repeatedly” things. “Look me in the eye, no, *look* me in the eye” things. “Staggering from the EEG drugs” things. “Stop toe walking, people will think you’re gay” things. “Stop looking at shiny and stacked things” things.

I tried to self-advocate to get my school records, but my mom bullied me out of it.

It took me over 40 years to talk about this publicly, and the only reason I am now is because I lucked my way into support materials for autistic women, or as seems to still be an ok thing to say, autistic females. (Yes, females in that sort of way, ladies.)

So I hate to break it to folks, but clinical diagnosis or no clinical diagnosis, school records or no school records, you’re never going to get rid of me.

I am well the damn hell right here, I will remain here until we all are free, and you can’t stop me. To paraphrase Rodrigo De Souza, “My paperwork is in the blood”. (Cancelled? Boo.)

Autism, ABA and The Arts — Childhood Memories

A mind-bendingly difficult thing from my past that i’m coming to terms with:

I might have been screened for and possibly diagnosed with autism back in grade school, or some sort of gifted + autistic, although that was before “doubly exceptional aspie” was a thing (early 1970s).

I went through the Very-Concerned-Teacher-to-shrink-to-non-staff-specialist gauntlet for a while. I definitely was being assessed for cross-gender behavior; pattern matching games and a “mind in the eyes” test was part of that.

That’s mostly sorted for me now, or sorted enough that I’m slowly moving from being floored by it to acceptance and integration of what happened.

What’s still too raw to talk about in much detail: realizing that writing and music was the communication vector that might have kept me from getting aggressively ABA’d or institutionalized in some way or another, right at the moment when modern “child autism” was starting to be acted upon (as in, ABAing autistic children). So, it’s a toss-up as to what would’ve happened, had I not lucked into writing and music as “ok, well, you’re ‘creative and sensitive'” as a result. Things went from “You’re a problem. *sounds alarm*” to “You’re innately talented, so of course you’re that way”, quickly, come fifth grade (homeroom teacher) and seventh grade, partially. I never was labeled as “gifted” within the school system, but writing and later, music was how I found my way to forms of support that were actually supportive, rather than more aggressive interventions, both informally and formally.

It also was a way to express myself creatively in a classroom setting, rather than *stacks small stones away from the other kids* or *runs into the closet, overwhelmed*. In other words, I was “learning how to behave”, so the early negative reinforcement machinations of ABA-like things wound themselves down. This unfortunately did *nothing* to stop students themselves from aggressing against me, but it did change the classroom dynamics, including the times where I was flunking out, in a class where I had tested beyond grade level or otherwise was capable of doing the work. The right-wing “take” on this is to attribute this to laziness, but…well, no, actually.

Same goes for my family — if my parents were presented with a diagnosis of autism, or as was starting to get phased out, schizophrenia as a clinical “who even knows” place-holder for autism (this all happened in the early 1970s), it’s very possible that my parents took one look at the school system and attempted to intervene on their own instead, because that was my family, back then. (This was before my father’s drinking, and the subsequent bullying and aggression kicked in.)

So when my active interest in spinning and stacking games shifted to reading the dictionary and their encyclopedia set, then once encouraged, to writing and music, it was tolerated, and accepted, both in my family and at school. “Narrowly escaping a worse fate” is my best guess and operative assumption, for now.