Category Archives: Parents

ABA, Autistic community, Interests, Liberation, Long Reads, Parents, Self-advocacy, Sensory Integration, Stimming, Teenage Liberation, Violence against us

Alternatives to ABA and behavioralism

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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.

ABA, Autvoid, Functioning Labels, Liberation, Parents, Uncategorized, Violence against us

Erasure

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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.

Autistic community, Autistic People of Color, Parents, Race

Conflicts

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Confession: I stink at community conflicts. For one thing, I overwhelm easy. Not that this keeps me from raising hell – if anything, I’ll go right for the oppression vector and start (metaphorically) swinging at it, even if it’s burning me out. I tend to wind up in polarized positions — I’m good with that, but it also means that the stakes are higher.

Autistic organizing feels different to me than anything I’ve been a part of politically, though. The closest thing I can think of is the trans community, but even that’s a coalitional effort, and while all of us are marginalized (seriously so), some of us are more oppressed than others, in fairly direct ways. The social dynamic seems to map to being completely fucked, a pretty big apologist, or worse – and from there, the usual range of oppression dynamics apply. Women are more disadvantaged than men, people of color are more disadvantaged than white people, poor and working class people (which is most of us) are more disadvantaged than wealthy people. My running “not a joke” joke about not being sure if it’s the 1950s or the 1590s seems more and more apt, the more I learn. There’s a lot of shit going on against us that’s horrible enough that I don’t even know to what degree I should put it on blast; if anything, the message I get back is “That’s so completely horrible, I don’t even know how to process it”. I didn’t, and I’ve been through some heavy shit. So it’s no surprise that things can wind up very, very polarized.

It’s not like other situations I’ve been in, where I was the one pointing out the inconvenient truths that nobody in some group or collective house or affinity group or whatever didn’t want to address — this is like the truths are right there on the table, in some sort of “Sauron? (Y/N)” sort of way. “Well, let’s try to be reasonable and hear all sides” doesn’t carry much weight, nor should it.

The self-check I’m doing here is that I tend to be a polarizing force in a lot of situation; it’s likely part of my neurology, as well as my background. Which, in a room full of people with similar neurologies (and frequently similar tendencies towards very strong views and tendencies to be all in, do or die as mine), could get…contentious. I’m down for it, though. ✊🏽

There are problems here that I’d love nothing more than to avoid, but I’m pushing myself to stay aware and ready about. There’s no magic potion that makes everybody who’s autistic (or another other category of marginalization and oppression) free of oppressor behavior, nor is there any spell that can make people automagically not have a social impairment.

That said, I think that trying to address social conflicts with more social rules, when someone is “impaired” in a way that affects that, is some sort of sinkhole. Saying “grow a pair” (regardless of gender) isn’t always going to work. There’s approaches that address this, they’re getting underutilized. Presuming a workable level of good faith (as in: I’d actually like to change, but I don’t know how), telling someone why their behavior is harmful, and how that can affect people as a result, works. We learn social situations, we don’t abstract them.

People can use disability to excuse oppressive behaviors as well, though. The current example I’m referring back to these days is “Brooklyn Becky“, who turned out to be alt-right, apparently.

That’s a pretty clear line, even if someone “doesn’t get the rules”. “Anybody who isn’t alt-right: come get your friend and talk some sense to them in a way that they’ll get”. Or just ignore them, because that’s crossing a line that I’m not gonna put up with, nor should anybody else, in my opinion.

The classic “Oh, that’s what that’s about! I didn’t understand how that works. Thank you.” learning pattern is a real thing — it’s just that it’s not *always* true. White people are notorious for playing “I don’t have a problem, you have a problem” games with people of color — and if that doesn’t work, they’ll start making up problems to try to force people into silence. This is far from something that’s unique to the disability rights community, I’ve seen white people in a variety of activist communities do it for years. As much as I’d like there to be an easy solution to this, I think we’re dealing with the same dynamics that exist in the society at large. It’s not pleasant to see allistic social norms, racist social norms, sexist social norms, even ableist social norms being acted upon, but what I keep reminding myself is that it’s not surprising, either — it just needs to be addressed, just as it does in any liberation movement. That’s what I’m here to fight for — the right for *all* of us to live our lives in ways that we want, free of oppression.

Interests, Parents, Passing/Masking, Stimming

Stimming and the Arts

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I love being a writer and musician, but there’s definitely a part of the arts for me that’s like “Can I just flap my hands and ball up my fists rather than banging on a drum? Can I just perseverate and be happily echolalic rather than learning repertoire or keeping a writing schedule?”

I’ve known for a while that I was using “acceptable stims” as a way of masking/passing – I wasn’t able to articulate (or was afraid to admit) what I was covering up, but I knew it was something. I didn’t have a full sensory diet. More like cupcakes and the occasional burrito. It was a stop gap.

I think about this a lot, both in relation to masking stims – as in, finding “socially acceptable” ways to stim, like tapping, drumming, flexing (I’m just stretching!), hair twirling, and so on, as well as in terms of how a lot of my tools and practices as a musician get in the way of self-regulating. Which in turn, makes it hard to make shit. Context shifting is a huge pain in the ass. It basically doesn’t work for me, I have to be in mode A (music) or mode B (software). Writing is better, because I can write drafts in a text editor, or by hand. I can hand-write parts as well, but it’s time consuming. Everything from music software to the instruments themselves messes me up. It’s frustrating. (Yes, I’m a trained musician, it’s not about that.)

There’s something almost ABA-like in the ways my stims got funneled into “acceptable things”. So much of what I “learned” from childhood onward was about suppressing them, or channeling them into something that was viewed as “productive”, like writing, music and drawing. When the stuffed animals (which were as some part of myself that I’m just now starting to get back) were taken away, and the light didn’t stay on all night any more, and stacking small stones became replaced with rosin and bow — something got lost, and in its place, a small corner of my mind held back something that almost feels like electrical current when it now finally flows through my arms and balled-up fists.

This is why I get a more than a little testy when people start playing “Well, you don’t have the *real* autism” games on people. Not only would I suggest getting a time machine and seeing what my shouty, stimmy, dinner-table-fleeing childhood was actually like – I’d also suggest being around for all the times when everything fell apart in adulthood and I was full-on melting down. When you’re done with that, I can walk you through my also-meltdown-laden pathway to getting reassessed this year.

I honestly fear for the autistic kids, teens and adults who have these sorts of parents lording over them, posting pictures of them to “show how autistic they are” (as if you could tell how someone’s neurology manifests from looking at a portrait photo) and wasting some portion of their day to climb into people’s mentions on social media and heckle them about how self-advocacy is somehow harmful, misleading and delusional, when that’s flatly not true.

If this is you? Let your child be a child, for fuck’s sake. I know you’re frightened for them, but don’t mourn for us, either. If that’s incomprehensible to you: you need autistic friends in your life.