Tumblr autistics I need your help

My school just announced an autism studies minor they’d be offering. I was so excited at first. Then I looked into the classes offered
and had a sobbing breakdown.

They’re gonna teach ABA.

At my college they’re gonna teach, like it was a normal academic class, how to belittle and dehumanize and abuse people like us.

I am writing to the dean of the department, the school and probably the local news. If they don’t drop that class I am quitting college. I cannot see my tuition go to fund abuse classes. I don’t need a degree in my field of work. I can walk away and I will.

What I need from you all please is some basic bullet points to make them see what ABA truly is and why it is bad. They won’t get it unless I have just a handful of clear obvious points stating the main objections, for my letters I will write.

Help me?

I don’t believe anyone would argue against helping an Autistic person cope with the challenges they face, but the larger question is how do we do that? Restraining someone who needs to concentrate by flapping is not the answer. Insisting children sit quietly so they can “attend” and be “table ready” when flapping or twirling a piece of string actually helps them listen and concentrate does not make any logical sense. Insisting that the non autistic way of communicating is the ONLY way to communicate is limiting and unhelpful to those who cannot express themselves by speaking. Viewing Autism as a list of deficits that can be corrected through a series of discrete trials will not make an autistic person any less autistic. Teaching Autistic people how to ‘pass’ so they can blend in better with non autistics is similar to the belief that a closeted gay person will live a happier and more fulfilled life by being closeted than someone who is “out”.
ABA teaches kids how NOT to communicate

Therapist: “Where does grandma work?” 
Little boy: “Um… she works at the house.”
“No. Where does grandma work? Say ‘library’.”
“Whee! Now you get a starburst.”

This is not how you teach three year olds to communicate in language. 
Communicating is not about saying what you think other people want you to say. Communicating is about connecting thoughts to words the best you can and saying them (or typing them, or pick your pleasure). 
This is not how you teach a kid “the woman who gives me many cookies works in a big building full of stories, which is awesome” this is how you teach a kid “when people tell me “blah blah blah” I should say “blah blah BLEE blah”.”
And this shows how, even “playful nice aversive-free” ABA is about having the kid be right, and not having the kid be a kid who mixes up “house” and “library”, or calls a library a “bookhouse”, or thinks Grandma’s “work” is baking him cookies. Don’t you want to say, “What does she do at the house?” and hear him say “Gives me cookies” and see him light up, and smile with him, or maybe he’ll tell you she stacks the books at the house and you can say “I think she does that at the library.” in a nice way, and also a way that actually teaches him something, because the way you’re doing it he just knows he’s wrong, and he doesn’t know why. 
Being a little kid shouldn’t be about wrong and right. If a kid tells you he’s found a portal to fairyland, you aren’t supposed to say “No”, you’re supposed to say “Take me with you”.

Fact: Ivar Lovaas, pioneer of applied behavior analysis (ABA) compliance training for autistic people, was first known for using the same techniques and methodologies in the NIH-funded feminine boys study. In that project, Lovaas used ABA to force boys with stereotypically feminine speech, movement, and dress to comply with more stereotypically masculine behavior in hopes this would prevent them from becoming homosexual.

What does this tell you about ABA?

—  Lydia Brown [link]

anonymous asked:

Hello, just wanting a quick For-Dummies answer here. I've read some of the posts on your blog enough to know ABA is bad and torture etc. but we had a speaker who was an ABA (which made me double take when I heard), the thing is he just talked about stuff they do such as teaching kids to substitute odd behaviours with better ones, e.g. kids who love "nappy-content painting" are taught to use playdo or use prompt cards to get baths, and things like that, I didn't really understand why it's bad?

Hi anon! I’ll do my best.

ABA is a scientific method:

  • the first step in ABA is the observation of the individual and their response to their environment in order to identify unwanted “target behaviours”
  • the second step is the systematic use of behaviourism-based techniques (aversives, rewards, operant conditioning) in order to eliminate unwanted “target behaviours” and encourage wanted behaviours

ABA as a “treatment” for Autism:

  • the basis of ABA is behaviourism and the medical model of disability, aka the deficit/illness/”broken baby” model
  • ABA’s main focus is on the normalization of behaviour (ie. extinguishing stimming, table readiness, “quiet hands”, eye contact) rather than on adaptive learning or accommodation
  • and the end goal of ABA is often for autistic children to be “indistinguishable from their [allistic] peers”
  • falling in line with those values, ABA principles push for neuro-normative methods of expression, like talking, even when alternative or neuro-atypical methods of expression, like AAC, would be better for the autistic in question
  • in ABA the consistent use of positive reinforcers/rewards and aversives/punishments to enforce behaviour— reinforcers being withheld until the wanted behaviour is performed, aversives being used when an unwanted behaviour is performed
  • common reinforcers include edible treats (gummy bears, chips, cereal); praise and verbal or physical affection; tokens that can be exchanged for “privileges”; stickers or stamps (often on a behaviour chart); a piece of lego or of a puzzle (aka a component to something the autistic wishes to play or complete); access to a favourite toy or beloved object; break time or a moment of rest from the “therapy”; access to the autistic’s special interest; time spent engaged in a “preferred activity” (aka something fun, like going to the park or watching a DVD)
  • an increasingly popular method of reinforcement in the ABA/compliance training world is the use of a clicker (a training device for animals that make a loud sharp “click” sound to indicate that the wanted action has been performed and that a treat or reward is forthcoming)
  • common aversives include the removal of tokens, stamps, stickers, or desired play components (lego, puzzle pieces); the confiscation of favorite toys or beloved objects; the withholding of snacks, water breaks, or recess/break from the therapy; the prevention of engagement in the autistic’s special interest or preferred activities; the use of “taste aversives”, such as pickle juice, vinegar, hot sauce, wasabi, or any other “effective” edible substance (the taste aversive is applied to the autistic’s mouth through the use of a spray bottle, or a q-tip, cotton ball, or pacifier soaked in the substance of choice); the use of tactile aversives (some examples are styrofoam, glue, bar or liquid soap, a piece of carpeting or upholstery fabric, sandpaper, or whatever incites tactile defensiveness or distress in the autistic); and the withholding of praise and/or physical or verbal affection
  • in DTT (Discrete Trial Training, which is considered a softer, kinder version of ABA) the therapist or practitioner will not look at, engage with, or respond to the autistic unless they perform the wanted behaviour, and any unwanted behaviours are ignored in the same way, or met with “passive resistance” from the therapist 
  • ABA as a treatment for autism focuses in part (and often a large part) on compliance training— for a truly horrific example of compliance training, see here (warning for massive ableism, dehumanization of an autistic adult, infantilization of an autistic adult, the demonstration of compliance training/ABA on an autistic person)

What you describe in your post:

  • does not sound or look or smell like ABA, so I’m going to go ahead and say it’s not ABA
  • so while the speaker may have truly been an ABA therapist that follows ABA principles, they either didn’t give a very good explanation of ABA or they intentionally left a lot out to make it sound friendly and great
  • in the case of your “nappy painting” example, that is a good and clever use of sensory tools/providing a good and healthy sensory diet for the autistic, and/or a commendable application of AAC in order to provide a more effective method of expression for the autistic and reduce their frustration
  • but neither of those things are ABA
  • I’m not sure how it happened, but somehow any attempt at all to teach an autistic child anything became known as “ABA”— this really shouldn’t be the case, since ABA is a distinct scientific method, not just any kind of therapy, and especially not just parenting
  • the calling-everything-ABA thing may have arisen out of the fact that, in the US, ABA is the only therapy that insurance companies will cover for autistic children, and so a lot of not-ABA therapy gets called ABA therapy so it can be covered
  • but seriously, what you describe is not ABA, but it is exactly what the parents of autistic kid should be doing— providing alternative communication methods, putting a good sensory diet in place, substituting unsafe sources of sensory input seeking for safer and more effective sensory input
  • aka, parenting their children in a way that understands and accommodates their individual sensory seeking and communication needs

In conclusion:

  • ABA is a distinct scientific method that arose out of the behaviourism movement and the medical model of disability; ABA employs the systematic use of operant conditioning, positive reinforcers, and aversives; and ABA is largely focused on behaviour normalization and “indistinguishability from peers”
  • autistic children may benefit from some occupational therapy to help with sensory integration, or speech therapy, or play-based therapy to foster development at their own pace, but all of those things should be the frosting (or smaller part) of their life, and the main part of their life, the cake, should be composed of the same teaching, play, mentoring, and time together that non-disabled children receive from their parents
  • and ultimately, in order to parent your autistic child well- to teach them to use AAC, or to provide sensory input catered to their brain’s needs, or to grow them up into healthy, self-confident autistic people- ABA is completely unnecessary, and often even detrimental to those goals

That ended up being longer than I intended, but honestly, this is the best I can do while still doing justice to the topic. I hope it helps.

[Good to see ABA questioned in a mainstream news group!]

“But Amy Sequenzia, 31, a non-speaking Autistic – she prefers this term to describe herself – and member of the Autistic Self-Advocacy Network, argues that defining success as behaving like a non-autistic person is unethical and abusive.

“They refuse to acknowledge that being trained to obey, and to force our brains to do things in a way they are not wired to do, causes long-lasting pain or makes autistics learn the ‘correct’ answers and ‘behaviors’, while keeping their autistic essence buried and unexplored. Self-determination begins with choice and stories of adults who only want to please and look ‘normal’ should not be considered success stories,” Sequenzia wrote via email.

This is partly why Sequenzia prefers to be identified as Autistic with a capital “A” instead of as a person with autism. “I use identity-first language because it is my identity and it cannot be separated from me. I don’t think I need to remind people that I am a person […] would we say ‘a person without autism?’. Unless the autistic himself prefers person-first language, it should not be something parents, politicians, organizations or the media impose on the rest of us. I am not ashamed of being Autistic. I am not ashamed of being Disabled. I am proud. The capital letter is a matter of pride and a little bit of defiance,” she added.”

Why I oppose ABA as a method of instruction

Content warning: This is a post about ABA.

The primary reason I think ABA is irredeemable: ABA uses behavior modification as a primary method of instruction. I think that is inherently demeaning, counterproductive and dangerous. 

ABA therapy relies on continuous extrinsic motivation, which means conditioning the person it’s being done to to comply with a lot of things that they’re actively unwilling to do for several hours a week over and over. It means making them do things that make no sense to them, over and over for many hours a week. That’s dangerous. It’s especially dangerous for people with disabilities who have complex communication needs.

It’s dangerous to make a kid do things that make no sense to them over and over and over while relying on extrinsic reinforcement. That teaches them that people in positions of power can do whatever they want to them, and that they have no right to protest or understand or influence things. ABA leaves people subject to it very, very vulnerable to abuse. Extreme conditioned obedience is dangerous, and it’s the most persistently reinforced behavior in ABA therapy. It’s generalized to other environments, and does not go away once therapy ends. 

There’s also a few secondary problems with ABA, which are deeply embedded in the culture of the BACB:

The goals of therapy are often bad in themselves. Eg:

  • Teaching a kid not to stim
  • getting them to say a few words by rote
  • insisting on eye contact
  • making a kid spend hours and hours on facial expression flash cards at the expense of age appropriate academics

(For some good discussion of the issue of bad goals, see “Would You Accept this Behavior Towards a Non-Autistic Child?“ by an SLP specializing in AAC.) 

The reinforcers are often unethical even when the goals have merit.

  • ABA depends on extrinsic motivation in order to make people subject to it cooperate.
  • This used to routinely involve pain and food deprivation, and sometimes still does.
  • (Neither is actually prohibited by the ethical guidelines of the BACB, although they do mildly discourage it).

Aversives have fallen somewhat out of favor in recent years, partly due to public outcry over them. That does not solve the problem, and a lot of common reinforcers are not much of an improvement.

ABA therapists talk about using things like bubbles, tickles and praise - but those things are not, in the long term, reliably sufficient to get anyone to comply with many hours a week of boring therapy.

What does work is taking everything a child (or adult) cares about, and making their access to it contingent on compliance in therapy. That’s an awful thing to do to someone, and it can seriously impair their ability to care about anything or communicate about anything. If you know that showing interest in something means it will be taken away, it’s going to be hard to show interest. 

I think that’s inherent to this kind of therapy - ultimately, you have to either get intrinsic motivation or use really invasive extrinsic motivation. But even if that problem was solvable, I’d still be opposed to ABA as an educational method, because of the primary problem that behavior motivation is not defensible as a primary educational approach. Educational approaches should be about teaching, not about behavior modification.

I don’t want to miss you

By Bernice Olivas

“But I don’t want to miss my Mommy,” My son Gareth says. He just turned eight this year. His eyes are wide and his mini Mohawk has begun to grow out. He looked like such a big boy when he got the Mohawk, he doesn’t look like a big boy anymore. He looks like a baby. He is crying and grasping my fingers. “No Idaho, please. Want mommy.”

“I’m sorry baby, but we are all done with Nebraska. It is time to go home to Idaho. I wish I could go with you but I have to stay here. Mommy will see you in June. Mommy loves you so much.”

“But it doesn’t make any sense!” He is angry now and I can’t breathe because if I breathe I’ll cry, and I can’t cry. I can’t cry. “No baby, it doesn’t.” I hold him tight one last time and then his father takes him from me. Our eyes meet and he reaches out to me with this other hand, we brush fingertips but do not hold on. We can’t hold on now, not if we’re going to do this thing,

They leave. I still don’t cry, not when they pull out of the drive, not when I can’t see them anymore, not as I tick off the miles in my head. I clean and pack and make plans and in my head I am keeping time. They are an hour away, three hours, and then six hours. It is February 18th, coincidently the day before I turn 32, and I am keeping time in my head until my children cross the state line. Once they are out of Nebraska I can feel safe. When they are somewhere in Wyoming I sit on the bathroom floor, lights off, and in a time honored tradition of women and mothers everywhere I shove a towel into my face and wail. I let it catch the tears and the keening noise I am making, because even alone I cannot unlearn that this kind pain should remain hidden.

What I don’t tell my sons and what they must never know is this

You are not safe in Nebraska my beautiful, autistic boys. Your autism baffles teachers, disturbs neighbors—your autism is too noisy, too messy, and often too naked. The way you flap and spin, the way you react to too much or too little sensory stimulus and your unrestrained, unexpected laughter are read as “unacceptable behaviors” here. Our CPS case manager does not speak body. She cannot hear I love you in a gentle head-butt, or decipher what you really mean when you repeat back commercials or movie scripts. She doesn’t understand and she thinks that your “behavior” is an indication of my neglect or abuse. She thinks that because I don’t make you wear socks with your shoes, not even on snow days, that I am neglecting you. She will not hear me when I try to explain that socks makes you itch and ache and fret and want to be free of the weight on your skin. All she sees is you misbehaving, getting undressed, not speaking when spoken to. That, my beautiful son, is not OKAY here. You are not okay here. So I must send you somewhere safe. Somewhere you will be okay.

It is so not-okay that total strangers accused us of neglect when they saw you get undressed at the park and when they see you undressed on our balcony. It’s so not-okay, that people at your school accuse us of neglect for not forcing you to wear socks even though they have witnessed the way socks make you scream, scream, scream and make you tear them off or scrabble madly at your shoes until you hyperventilate and curl into a baby ball and keen. It is so not-okay that our case manager, even though she herself has admitted that there is no evidence that we are bad parents, bad people, has said, “You need to take our help because if these behaviors do not stop your kids will end up in the system.”

And what she meant, my sons, is that I need to allow them to send an analyst to our home and your school to observe you, to find the problems with you, and then create a program to “fix you”. The state wants to teach you to comply. They will give you a treat (a reinforcer) when you are good and physically walk you through the motions of obedience when you say no. Your right to say “NO” will be trained out of you. It does not occur to them how naked and vulnerable a person is without their “NO”. Wars have been fought for the right to say “NO”. But I am supposed to give yours away, let them train it out of you for the sake of my convenience, for the sake of “good days” at school, and so that complete strangers are not made uncomfortable by your “strangeness”. NO! No! No! You are both wonderful just the way you are. But if we do not comply “voluntarily”, if I refuse their help we will be relabeled as “at risk” and I will no longer have the right to refuse their help. The threat is clear, what she meant was, if we didn’t comply she would take you away from us.

It is also not okay that we are poor and that your father is the stay at home parent. Our case manager keeps calling your daddy “unemployed” and says to me that he is the problem. He is too aggressive, to over protective, his attitude is too negative. Daddy calls her out for talking down to you. Daddy steps between you and her when she ignores your boundaries. Daddy scares her. She says he needs to go back to work. If he does the state will pay for daycare. When I push back, ask her to consider the fact that she might be overstepping some lines, she says that “everything happens for a reason” we should be more open to learning from her and the situation. She is in her early twenties, we are her second or third case and by her own admission she’s “never worked with an autistic family” and “doesn’t know anything about autism” but she assures us that she’ll “Google” it. In Nebraska your life is in the hands of a person who has spent less than three hours in your company, who has no training in autism. In Nebraska, the case managers, the anonymous callers, the school social workers are all considered the experts and the parents are treated like the enemy if we don’t comply.

So if I don’t let you go, right now, with no explanation, without saying goodbye to your friends and your teachers I could lose you. I could lose you to a system that sees you as a broken unit to be fixed or replaced, a system with a vile history of taking children out of their homes and losing them, as if they were mittens, or pen caps, or old receipts, or rubber bands.

I can’t tell you any of this because I cannot stomach the thought that you might hear, your fault, this is your fault. I know I will answer to this later when you are almost-men and you call me to account for my mistakes, as all children do. I hope you understand. I hope you don’t see my sending you away as cowardice. I hope you don’t see my staying behind to finish my PhD as abandonment. I hope you understand why all I can say is, “I don’t want to miss Gareth and Osiris either, but we are all done with Nebraska, it’s time to go home to Idaho.”

At some point after they are gone I fall asleep in the couch, clutching their comforter. The next day I go school. I am a Doctoral student at UNL, a member of the English department. I teach college students and work in the writing center. I hold a Master’s degree. According to the 2012 U.S. census just over 10.3% of the population holds a comparable degree. Only 4.1% percent of Latinos hold the same degree. Those numbers get smaller as my gender and Native heritage are taken into account. I am first in my family, on either side, to obtain a college degree, the first to obtain the Masters, the first to be accepted into a doctoral program. My Master’s Thesis was on the subject of Autism. One of the guiding Professors in my research was an expert in the area of Severe Disabilities and Autism Spectrum Disorders at the Barkley Memorial Center, University of Nebraska. My education does not protect my children. A case manager in Nebraska is required to hold a B.A but not required to specialize in social work, family services, or education. No one I interact with in child protection services specializes in Severe Disabilities or Autism Spectrum Disorders or special education. That day I teach, I run office hours, and I smile. I come home to an empty house and wonder again how all of this happened, and why.

You can read Bernice’s complete essay as a PDF here: I Don’t Want to Miss You – Bernice Olivas

If autistic people are saying something, like “ABA is abusive”, and you as a non-autistic person have an instinctual “Hey that’s not my experience, I have to tell them why they are wrong!” reaction, you should not act on that instinct. In doing so you end up derailing, or invalidating, or attacking, and very quickly become a bad ally or no ally at all. And you look kind of silly, since, you know, you are not autistic.

Whether or not is looks like abuse to you is irrelevant. Whether or not you’ve seen any abuse take place is irrelevant. As a relatively minor feature in this child’s life, I can guarantee there have been many, many hours of “therapy” and many more hours of schooling and home life that you have not been witness to, and who knows what was going on then?
The problem with errorless learning

Content warning: This is a somewhat graphic post about ABA that links an even more graphic post.

There’s a particular variant on ABA called “errorless learning”, which works like this:

  • You break a task down into small steps
  • Then do discrete trials of the steps, over and over (If you want to know more about what discrete trials are, this post by a former ABA therapist explains it).
  • When someone does it right, you reinforce in some way (either by praise or something concrete)
  • When they do it wrong, you either ignore it, or prompt and reinforce a correct response

This is considered by many to be a kinder, gentler form of ABA than punishing incorrect responses. (And maybe in some sense it isn’t as bad as hitting someone, taking their food away, or shocking them. But that’s not the same as actually being respectful. Respecting someone takes much more than refraining from hitting them.)

Errorless learning is not actually a good or kind way to teach someone. It is profoundly disrespectful.

When you ignore responses that deviate from prompts, that means that you’re ignoring a human being whenever they did something unexpected or different from what you wanted them to do. It means you’re treating their unscripted responses as meaningless, and unworthy of any acknowledgment.

That’s not a good thing to do, even with actual errors. When people make mistakes, they’re still people, and they still need to be acknowledged as thinking people who are making choices and doing things.

Further - not every response that deviates from the response you’re trying to prompt is actually an incorrect response. There are a lot of reasons that someone might choose to do something else. Not all of them are a failure to understand; not all of them are incorrect in any meaningful sense.

For instance: they might be trying to communicate something meaningful:

  • They might be putting the story pictures in a different order than you’re prompting, because they have made up a different story than the one you’re thinking of
  • They might be giving you the boat instead of the apple when you say “give apple” because they are making a joke about the boat’s name being Apple

They might be intentionally defying you in a way that deserves respect:

  • They may be of the opinion that they have better things to do than put the blue block in the blue box for the zillionth time
  • They might know perfectly well what you mean by “give apple”, but think that eating it is a better idea
  • They might be refusing to make eye contact because it hurts

They might be thinking of the task in a different way than you are:

  • They might choosing to use a different hand position than the one you’re prompting, even if they understand what you want them to do
  • For instance, they might have discovered that something else works better for them as a way of tying their shoes
  • Or they might want to try different things
  • Or the position you’re using might hurt

People do things for reasons, and those reasons aren’t reducible to antecedents and consequences. People have an inner life, and their thoughts matter. Even children. Even nonverbal children who need a lot of help doing things. Even adults with severe cognitive impairments. Even people who have no apparent language. All people think about things and make decisions, and those decisions are meaningful. All people deserve to have their thoughts and decisions acknowledged - including their mistakes.

When you teach someone something, acknowledge all their responses as meaningful, whether or not they are what you expected. 

a note to (what feels like) every ABA therapist ever

If I’ve linked you to this post, congratulations. You’re an ABA therapist who is currently defending ABA to a bunch of autistics and/or our allies and/or the parents of autistic children. I’ve gotten tired of typing endless versions of this post for every new ABA therapist I encounter, so I decided to make things more efficient. It usually goes roughly the same way every time, anyway.

I’ve probably already engaged you in conversation, and you are probably proving frustratingly unwilling to listen. I bet you’re pulling the “my ABA is not abuse, I’m a great ABA therapist, my clients are always so happy to see me, maybe there are a few bad apples but most ABA therapists are great and really love their clients” thing right now.

Well, here is something that may surprise you—

it is the autistic people being submitted and who have been submitted to ABA, and not the ABA practitioners, who get to decide if ABA is abusive or not.

And quite frankly, as an allistic person trained and educated by an inherently ableist, violent institution, there is a good chance that you wouldn’t even recognize the abuse as abuse. 

Autistic people perceive differently, we have different pain and sensory experiences, we feel things differently. Allistic ABA practitioners, no matter how experienced or “empathetic”, really don’t have any idea what it’s like to be autistic, and they never will.

That’s why it’s so critical for you to actually listen to autistic people, rather than shouting over our voices and stepping all over us as you rush to defend your profession. If you actually care about autistic people,

who are being actively oppressed, stripped of their autonomy, mistreated, abused, dehumanized, and traumatized by the non-autistic majority every moment of every day,

then you need to sit down and listen to what we are saying. That’s the only way to learn, and the only way to put an end to this mess of mistreatment and ableism. Heaven knows the autistic community can use all the allies it can get.

Just a little reminder that Autism Speaks supports the Judge Rotenberg Center

The JRC does horrible, inhumane things to autistic people in the name of “treatment”. Don’t be fooled by their “success” stories. Their “success stories” are people who have been brutalized and tortured into looking neurotypical and they live the rest of their lives in a nightmare.

This is what REALLY goes on inside the JRC
Trigger Warning: This is beyond abuse, THIS IS TORTURE.


Reblog to make this known.