#WalkinIssysShoes

Trigger warning: Discussion of ABA, quiet hands, whole body listening, etc.

I’m going to ask you to do something for a minute. Stop moving. Don’t scratch that itch in your left ear. Don’t shift your weight. Don’t frown with concentration. Don’t blink too much. Don’t yawn. Don’t stretch. Don’t fidget.

Don’t have a loud body.

Watch the clock. Has a minute passed yet?

Okay. Sticker. That wasn’t so hard, was it? Again. Two minutes this time. We need to be table-ready before anything else.

Oh, you moved. Quiet body. Sit still, don’t do anything. Two minutes.

Feel how you’re aware of how much you normally want to move. Feel frustration because you know you’re not allowed to.

Don’t frown. Happy face means happy days. Quiet body. Still. Two minutes.

Notice how it feels like you’re being set up to fail. Who doesn’t move at all?

Quiet.

Still.

Two minutes.

Think about how much concentration this takes.

Quiet. Still.

Okay, sticker. Good job!

Now, I want you to read the rest of this post with a quiet body and face. You can’t learn if you’re fidgeting, after all. No, look at me, look at the words. Quiet face, you need to show whole body listening, remember? Don’t glance away. Not even if you hear a weird sound. Quiet face, quiet hands, quiet body. Whole body listening. Look at me! Sticker, good job.

No, look at me. Don’t look away when I’m talking. I’m not done yet. Look at me. Sticker.

It’s hard, isn’t it? Do you feel how your whole body is rebelling? You know how you listen best. But I won’t listen. Because I want quiet hands, quiet face, whole body listening more than I want listening. Concentrate on it. I won’t stop and prolong things by bothering you about it if you do it right the whole time. If I know that you can’t both concentrate on my words and on whole body listening at the same time, I don’t care.

Now, I’m going to ask you to do some things. They will seem pointless to you. They’re not pointless, but the lesson they teach is not one you’re supposed to be aware of learning. Touch your nose. No, quiet hands. Touch nose. Quiet face. Touch nose. Sticker!

Five stickers, you’ve earned a break! Here, have a quarter of a cookie. No, you don’t get the whole cookie, you have to earn that. Anything you like, you have to earn. Imagine playing your favorite game in two-minute increments, interrupted with doing what I want. You don’t get enough time to do anything in the game. That’s earning!

Quiet face, whole body listening. Look at me. Sticker.

Are you frustrated that you don’t get to finish anything? Are you angry? Quiet face. Are you?

Feel the frustration of never getting to finish anything. Of never being able to just enjoy. Everything has strings. Everything is conditional. Even your body isn’t yours – if you protest or just refuse to do something, I’ll make you. If I’m not big enough to make you, I’ll get a bunch of my friends together and we’ll hold you down until you give up, so you understand that we can make you do anything we want to.

Imagine you go home, and it’s the same. Quiet hands, quiet face, always being tested, always watched. Isn’t it insulting?

Imagine your siblings don’t have to have quiet hands and quiet face and whole body listening. They can fidget and have attitudes and protest and look away and talk back and even outright ignore. Imagine it’s just you that’s expected to do those things. It’s just you that has to be managed all the time. Isn’t it unfair? When others tell you it’s not unfair, does it feel like everything you do, everything you are, is wrong?

Imagine people you care about, who you depend on, make snide comments about you. Not just condescending fake-enthusiastic baby-talk like I’ve done so far. Imagine it’s outright insulting. You can pick up on the insult but not on how. You get frustrated and angry. Your parent tsks and sighs and rolls their eyes.

You get angry. But you’re not allowed to show it. Quiet face, remember? Smile for me! Smile! Good, that’s a nice smile! Sticker.

Everyone else is allowed to fidget and move. Not you.

Quiet hands.

Everyone else is allowed to get so happy they can’t contain it. Not you.

Quiet body.

Everyone else is allowed to relax. Not you.

Look at me!

Everyone else is allowed to have fun own their own time frame. Not you. Your fun is rationed and controlled and earned in bite-size pieces that can’t be enjoyed because they’re only part of a whole that can’t be reassembled.

Sticker.

Everyone else is allowed to get bored. Not you.

Whole body listening, remember?

Everyone else is allowed to get upset. Not you.

Quiet face!

Everyone else is allowed to get frustrated. Not you.

Quiet hands!

Everyone else is allowed to get angry. Not you. Your anger is wrong always, no matter the cause. It’s because you’re autistic that you’re angry, and you have to be trained out of it. Not because any reasonable 15-year-old would object to being treated with condescension and having literally everything in their life, down to when and how long they can play video games for, micromanaged.

Bottle it up. Repress. Don’t feel.

Don’t  be happy, it makes you bounce and move. Quiet body.

Don’t be sad, it makes your face screw up. Quiet face.

Don’t get bored, you look away. Look at me!

Don’t get anxious, it makes you wring your hands. Quiet hands.

Don’t like things, they’ll use it against you. You have to earn it.

Don’t protest anything, no matter how unfair. It will be used to punish. You’re losing tokens.

Don’t feel. Don’t think. Don’t move.

Don’t be.

Don’t be you.

How long could you live like that before you exploded?

Walk in Issy’s shoes.

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17 thoughts on “#WalkinIssysShoes

  1. Reblogged this on Melissa Fields, Autist and commented:
    #WalkInIssysShoes

    This is what Issy went through. This is what ABA therapy is. Yes, i #WalkInIssysShoes. I am also an Autistic adult who was once an Autistic child. Most of my family didn’t understand. They still don’t. And they don’t seem to want to. I refuse to keep quiet. I refuse to have quiet hands and feet, because it is wrong to squelch people in this manner. Stop thinking you can cure and fix the Autism out of us. It will not work.

  2. CC says:

    I never had straight-up ABA because I wasn’t diagnosed until adulthood, so I tend to give way to those who actually had it when one gets down to the nitty-gritty. But I definitely had my behavior managed in similar yet less oppressive ways – told not to bounce my legs (my dad has what would today be called restless leg syndrome, so I mimicked it; it was a great stim), told not to ‘sound so smart, it’s rude’, as if it was my fault I was hyperlexic, et cetera. It infuriated me, so I could only imagine how bad actual ABA would be, until I read this post.

    A favorite thing of mine when I was younger – that I didn’t realize at the time was a stim – was to “play violin” with my hand. Play the pieces as if I had my violin in my hand, but I didn’t – so my fingers were touching my own palm in rhythm. I had a teacher in middle school that used to call me out for it, in front of the whole class. I never got what the harm was. And I hated the ‘conditioning.’ It only made me more bloody-minded – I did it in my lap instead of on my desk. It was my body, dammit.

    I think my long-winded point was that this post wrecked me, and I will be linking to it whenever I need an explanation of just how dehumanizing this hateful practice is.

  3. h4rrish4wk says:

    Reblogged this on An Autist Human and commented:
    An incredible insight and mirroring my own prior concern as to what Issy may have gone through and would, understandably lead to outbursts.

  4. The Unknown Witch says:

    I have never had autism or anything like that, but you just described my childhood to a T. With lots and lots of hitting. Religion was the excuse in my case.

    • ischemgeek says:

      I’m sorry that happened to you. It was abusive. It’s abusive no matter the excuse used.

      • The Unknown Witch says:

        Isn’t it amazing how abusers can always find an excuse for their abuse? Don’t be sorry for me. I got my revenge by not only surviving, but thriving. it really annoys (understatement of the year) my family that I have managed so well without recourse to their religion. 😀

  5. Jodilynn pautz says:

    I may be opening myself up to major scrutiny, but I have to say something. I have worked in ABA since 2007, and I have an autistic son. I also have bipolar, and my husband has ADHD and seizures. Maybe I am an exception to the typical abusive environment that you see. I understand when my son is in school, he has to work, like other kids. He has his modifications, and I’m grateful for it. But when he is home, he jumps, he spins, he scripts from movies (and not only do I let him, but half the time I script with him!), he runs around, he gets messy, and he has his moments where he is overstimmed and angry and whatever, just like anyone else. He gets hugged, squeezed, made into a sandwich with the couch cushions, you name it. But, just like I would expect from my neurotypical daughter, when he is in school, I know he has to sit in his seat. I know he has to focus. I know he has to complete his work. I know he is doing his best. I know he can get a break when he needs it. And when he is having a particularly awesome day, I know that he gets a snack. I am perfectly okay with this, because my son is happy and he is improving. The same goes for how I treat my students. If they stim, I let it go. I do not want of I force change on how they cope with life, or how they enjoy the world. Do they need to complete tasks, just like everyone else who goes to school, yes. My student never gets hit or punished by, not EVER! ABA is not the same for everyone.

    • ischemgeek says:

      I believe you that you do not try to be abusive.

      Here’s the thing, for me: I hear from my childhood-diagnosed friends, and the vast majority of whom say ABA was abusive for them. Even the ones who had “good” ABA, and good ABA is nowhere near as common as many would like to believe (your own guidelines still allow for the use of severe aversives such as those used at the Judge Rotenberg Centre, for example). ABA’s very recent past – I’m talking 90s and 00s here – is so bad that in autistic spaces, PTSD trigger warnings are given for all ABA discussions. Many autistic people were so traumatized by ABA in their childhood they have complex PTSD as adults. Even people my age. Even people younger than me.

      I understand that not all ABA is ABA and that some stuff that isn’t ABA calls itself ABA to get insurance coverage, which complicates things, but the fact is that the issue is very charged and among autistic people over the age of 20 or so, people who’ve had good ABA experiences are very rare. I’ve met one. I know dozens of autistic people.

      I think back on when I was a kid, being taught how to hand write and speak without a stutter. Very similar methodology was used to teach me to write and speak as was practiced in mainstream ABA at the time (the 90s). The adults around me didn’t think they were being abusive. Now that I’m an adult myself, I think they didn’t want to be abusive. But it was. Even my teachers in school, who didn’t hit but did hold all other English learning hostage to my handwriting and who wouldn’t let me move on to more advanced books until I could read them aloud even though I was reading books intended for high schoolers in first grade, were abusive. It was abusive to neglect my education rather than accommodate my disabilities.

      I think back on those situations and more, and I can’t help but feel that at best, ABA must be approached with extreme caution and cannot be compliance based. I, as an adult nearing my late 20s, still find it difficult to impossible to stand up for myself to authority figures in person because of the compliance-based, abusive methods used on me as a kid.

      And I had it easy. I was not diagnosed autistic as a kid. I was “just” thought of as the weird little, smart enough to be anything but “too lazy” to try, who liked to throw tantrums and hit herself whenever she decided not to do anything. Growing up with the bad kid label and the “for a smart kid you sure are stupid” label was easier by far than what I’ve been told of my friends’ experiences with ABA. For me, it was just writing and speaking that people forced me to comply on, to repeat over and over and over long after it had started to hurt. I had it easy. For my friends, it was everything of who they are – how they moved, how they emoted, how they felt and talked and experienced, what they liked and disliked, their choice in clothes and foods and hobbies. All of those were treated as “behaviors” to be corrected or were co-opted as cudgels to enforce compliance.

      On the topic of stimming in particular, with regards to school and suchlike, I suggest you read a cognitive defense of stimming: Or, why quiet hands makes math harder. Fact is that autistic people, much like people with ADHD, need to fidget and move in order to concentrate. Personally, I was unable to become “table ready” as a kid. Parents and teachers alike tried to make me. They tried everything: Bribery, threats, coersion, confinement in an isolation room, restraint in a proper postion until I quit screaming and was too exhausted to fight anymore, and hitting. None of it worked because I can’t be still AND concentrate on something at the same time. Being still takes up all my concentration and I have none left for anything else.

      Even as an adult now in my late 20s, if I am concentrating, I am rocking, probably with my knees pulled to my chest and my free hand tugging at my lower lip. It’s what works for me. It does not impede my concentration, and it only ever impeded others’ concentration when my teachers or parents made an issue of it. If you make me “sit properly”, I cannot concentrate, I cannot learn, and I cannot work. I need the motion. Every single autistic person who I’ve spoken to – and I know quite a few, both in person and online – is similar in that they need motion.

      Here’s the thing: Most autistic adults I know have little to no issue with reignging in truly disruptive stims that are distracting or upsetting to other learners. It is neither reasonable nor fair to say, “Sure, you can hum loudly in class whenever you feel like it even if others are trying to concentrate because they’re writing a test,” But there’s a difference between teaching consideration and forcing conformity. For kids with ADHD, people have learned that forcing them to stay still just makes everyone miserable. So what do you do instead? You find ways for them to move without bugging others or disrupting class. The same sort of accommodation should be given to autistic kids. Rather than forbid stimming entirely, find ways for kids to stim non-disruptively so they can concentrate just like their typically-developing peers.

      • Jodilynn Pautz says:

        First, may I just apologize to you and to your friends for anyone who has ever hurt you? What I know of ABA is obviously much different, as I am not on the spectrum, and I am trained in it. I take my training seriously, and I follow it, where is know many colleagues do not. Too many people believe that a non compliant student is a behavioral student, and therefore they must be in restraint. There have been several times that my student doesn’t want to complete a task, such as a puzzle. According to my boss, I am to make him do it so he doesn’t “escape” what he is told. But this is where I disagree. He may not be listening, and he may be escaping…. But I have to wonder why. Why is this happening? Is there something going on that I am not seeing? As a behavior therapist, it is my job to understand ALL behavior, not just it’s function and then force compliance. So, I look for other signs– does he need to go to the bathroom? Is he hungry? Is he distracted, or overstimmed? Does he need a break? I evaluate this, and I ask him. Now, he is nonverbal, but often, if he is hungry or needs a drink of water, despite what my boos tells me, I give him the break to get what he needs. I can’t imagine being denied a drink if I felt my throat was on fire, so why deny him? Now, do I know that he might be asking for water simply to get out of work? Yes, it’s possible. And again, this is what I am “trained” to prevent, because “routines are important”. Ok, sure they are… But, name a 7 year old that hasn’t asked “can I use the bathroom?” And then goes in the bathroom to talk to his or her friends. It happens! If anything, I see some of his “lack of compliance” as his learning to express what he wants, and even if it doesn’t coincide with my lesson that day, my goal is to help him communicate, not make him into a little soldier. I have 3 children, one is autistic, and the other two are not. My girls, without diagnosis, often behave worse than my son. For the most part, he only has “behavior” when he is in transition, his schedule deviates, or he is skimmed to the pioint of meltdown. And so many people gawk and stare, but I will sit there in the middle of Walmart, holding him, hugging him, and telling him everything is ok, then yelling at the passers by to keep walking, because staring won’t help him.

        I completely agree with what you say about fidgeting. Who doesn’t fidget? I bite my nails, and I am 28. If I was told not to do that, especially if I was nervous or anxious, it would be the same for me– all my energy would be focused on trying not to bite my nails. Or, since I love music and I danced for 17 years– I randomly break into song, or I bounce my legs and tap my feet, tap my desk like it is a drum, etc. when a good song comes on. I hum along. I sing the spongebob theme song to make my student laugh (he loves spongebob), and the list goes on. There has to be flexibility. People think that IEPs are the only modifications that need to be made, but it isn’t. Fidgeting is healthy, stimming is healthy. Like you said, if it is particularly disruptive, that can be remedied by teaching consideration. Too often, people I work with and others that have talked to me about autism do not realize that non verbal does NOT mean a lack of understanding. Talking to my students and my son like I would anyone else is dire. Granted, I may use shorter sentences, or PECs when necessary, but the idea is the same. Joking, laughing, compassion, empathy– it is all part of communication,. The ONLY time I say things like “quiet hands” (and truthfullyn I usually say “nice hands”, or “hands down”, maybe even “hands to self”) is when my student or my son attempts to bother someone else, by hitting, pulling hair, wiping boogers on them, etc. I don’t want him to sit there without moving like he is awake but comatose, but he wouldn’t like being hit, so I try to ensure that he doesn’t hit others. Again, consideration, not compliance.

        I cannot apologize enough for everyone in this profession that abuses their position and spends more time giving orders than giving understanding of behaviors. To me, that is a complete opposite of what behavior analysis is meant to do. In life, certain behaviors will get you rewards (working for a paycheck, getting a thank you for helping a stranger, etc.) and others will get consequences (beating someone up at school can get you suspended, drinking and driving can get you in an accident, etc.). Is it important to know that all our actions, behaviors, words, and choices have some type of consequence, natural or otherwise? I believe it is. But the whole point is that the choices remain.

        To all of you who have ever been hurt by ABA, I cannot offer enough apologies, and I know that probably isn’t much compare to years of this pain and suffering. What i can promise you in retribution is this– I just got accepted to grad school for psychology and applied behavior analysis. I intend to eventually get my doctorate degree in neuroscience/neuropsychology. By myself, I cannot change the system. And I wish I could. But I can promise you that as I accomplish my educational goals, my life goal will be to continue to promote neurodiversity, and to change how the system of behavior analysis is run– not to be compliant, but to truly understand behavior, and to help break the barriers of communication. I am so glad that you all didn’t scrutinize me, and because I didn’t do ABA in the 90s, I would have had no way of knowing what it was like. I am thankful that you shared your experiences with me, as difficult as they may have been to do so. Your words have an impact, bigger than y may realize right now. And I will continue to follow your blog. I hope you know that there is someone out there in the field, working on behalf of the individual instead of the reputation of the company. God bless you, hon.

      • ischemgeek says:

        Autistic people need professionals who recognize we’re people, like you.

        ABA has a problematic history, right back to its roots. I am sure, as a professional, you know that early ABA is what was used in the Feminine Boy Project. If not, I suggest you look it up, because that is how your bosses were taught – Autistic kids and feminine boys were the first two test cases for it. These problematic roots are not unique to ABA – many branches of psychology have equally problematic histories (behaviorists terrifying babies into phobias of the color white, the Zimbardo experiment, etc), but where most of the other branches differ from ABA is that they own their past a lot more. They say, “Yes, this happened, and it was terrible. We have regulations now to ensure it never happens again.” ABA professionals I’ve dealt with – you being the exception – on the other hand try to deny ABA’s past and brush it under the rug. This sort of denial game creates an environment where abusive practitioners can flourish because while ABA pros insist to me that standard of practice has moved on from there, there is not enough change to the professional regulations to reflect it. For example, nothing in current ethical guidelines prevents a practitioner from building a device similar to a shock collar and sticking it on an autistic person and zapping them every time they stim. That was, until legal and not professional intervention, the go-to method of treatment at the Judge Rotenberg Center. Professional organizations have yet to put sanctions upon those practicing there. Even though the UN has called it torture.

        I do not think that there is nothing to salvage in ABA: CBT is a very similar methodology, except that it is more self-directed, and I had excellent results using CBT with a therapist to treat a needle phobia I had. The principle can work. The practice is the problem.

        Where CBT and ABA differ is that CBT centers on the person being treated, where in ABA it centers on what the parents want and the person is often disregarded entirely. ABA, as currently practiced in the compliance-based format your bosses want you to use, is essentially grooming someone for abuse. It does the exact opposite of what an ethical therapist should want for a patient, by training people out of being able to self-advocate and communicate distress. I lose my words because of anxiety when I try to stand up for myself now. If I push through and force myself to resist, I’ll have a meltdown before I can self-advocate productively. I simply can’t do it in the heat of the moment. I comply, comply, comply and melt down and suffer the consequences after. That’s not healthy. But that’s what compliance-based teaching did to me.

        And I didn’t even have full-blown 90s ABA, which I must emphasize was worse. Aversives for autistic people in the 90s included hitting, being forced to inhale ammonia, muscle pinches hard enough to leave bruises, being forced to eat terrible-tasting things, starvation, and being forcefully exposed to things they had severe sensory aversions to. Some autistic people were on programs where the only food they got was rewards for complying. Imagine taking a toddler and not giving them food unless they comply to a forty-hour work week. That was done. And don’t underestimate the effect of forced exposure to sensory aversions: Julia Bascom, a famous autistic self-advocate, has described some of the things they forced her hands onto as feeling like having her hands pressed onto broken glass. Also in the 90s was when the JRC got started with their graduated electronic decelerators, which have since been called torture by two different UN special rapporteurs on torture. Autistic people were and are today (the JRC is still open and until this year was still electroshocking students into compliance, many ABA programs restrict anything the student enjoys so that they only get anything fun or pleasurable if they comply, and in many regions it’s still standard to put a toddler in a 40-hour work week) harmed in the name of normalcy, and in the name of making them indistinguishable from peers.

        I am not telling you these things to make you feel bad. Rather, I am telling you them because when you go into the field as a professional, you will have the power to effect real change. You will be able to talk to your fellow students and teach them empathy for their patients. You will be able to set standards in your practice. And, importantly, as a member of the professional college, you will be able to advocate for real, and important, changes to accepted standards of practice – stuff like eliminating the ethical loophole that allowed the staff at the Judge Rotenberg Center to continue torturing people without professional sanctions. Autistic people, by and large, have neither the power nor the social clout to lobby for internal changes successfully in an organization whose senior members don’t really think we’re people. We need nonautistic allies for that. Know that autistic people can be some of the most stubborn people in the world when we want to – if ABA practitioners don’t clean their own house, then autistic people, through ASAN and AWN and similar organizations, will eventually manage to force external change. It was autistic-led advocacy that got the JRC prohibited from shocking new students, that resulted in the investigation of the JRC by the UN special rapporteur, that got the FDA to prohibit the use of GEDs back in April, and that has led this past year to many corporate sponsors dropping Autism Speaks, as a few examples. If ABA doesn’t change on its own, they will eventually be able to force it. But it’s easier if they don’t have to.

        My challenge to you is this: In grad school, never let any of your peers forget that autistic people are people. Much of ABA’s issues stem from denying that children who, to use Lovaas’s own words, “behave bizarrely” are people with their own thoughts, emotions, wants, and needs. Don’t let them deny that we’re people. Teach them empathy. You’ll all be better psychologists for it.

      • ischemgeek says:

        Also: You don’t have to apologize for the wrongs of others. I would like you to promise that you’ll learn from those wrongs and always strive to be better than those who came before. I don’t blame you for what your predecessors did when we were both kids. I do expect you to own the past of your field, just as I will strive to do as an engineer when I achieve my professional certifications (do you know what the Iron Ring symbolizes in Canada? A reminder of the Quebec Bridge disasters and the duty of engineers to public safety and the ethics of their profession).

      • Jodilynn Pautz says:

        I took your advice and looked up the Judge Rotenberg center, and it took everything I had not to throw up on my iPad. That is NOT treatment in any way shape or form!!! You have my solemn oath that as I continue in my schooling and in my career, there will NEVER be an instance of ANY type of abusive behavior from me or any future staff to any individuals we work with. And though I have been advocating for autism before (mostly for insurance companies to cover services, etc.), trust me when I say I have a completely new perspective on that now. I am 100% on board. I live in Northern Ohio, between Cleveland and Toledo. Please, keep me updated on any events and petitions going around. If no one else in the world was in your corner, I will be.

  6. I was told not to flap my fingers as a child because ‘people will think you’re crazy.’ I dont flap in public because of unwanted attention. I like being anonymous and hate the spotlights.
    but when neurotypicals stim in their own ways, like flapping a pen, it’s acceptable. I flip a pen at work, but i do it for hours on end and with autistic hyperactivity and super focuse. one of the workers asked me to stop because ‘it bothers me. I cant stop looking at that pen when you’re flipping it. can you stop doing it?’ i simply said, “no.” and resisted adding, “kiss my autistic rear end.”
    no one is forcing that neurotypical to look at the pen, and flapping calms me down. it bothers me not to do it. too bad if someone has a problem with it.

  7. […] even without aversives (Issy was in an intensive ABA program for most of her life), ischemgeek has the most harrowing post on the topic I have yet […]

  8. […] approved for treating the ‘symptoms of autism’ (whatever those may be) is called Applied Behavioral Analysis (TW: emotional trauma in that link), and it follows the exact same principles as ex-gay therapy. […]

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