Showing posts with label ABA therapy. Show all posts
Showing posts with label ABA therapy. Show all posts

Behaviour Analysis, The Autistic Way

Ann Memmott PGC
annsautism.blogspot.com

Autistic children endure a lot of ‘behaviour analysis,’ usually done by non-autistic people who are not trained to interpret autistic behaviour and motivation. Often they are taught to assume that the motivation is the same as that of non-autistic children. Thus, if a child gets out of their seat, they are taught that perhaps they are avoiding working and need to be incentivised to sit down and concentrate. Or perhaps that they are attention-seeking and need to be ignored. There’s entire years of courses designed around such theories.

Autistic children aren’t the same as non-autistic children, though. Their reasons for behaving in a particular way are often different, because their brains are designed to work differently. I see too many books and training courses where teachers are told that autistic communication & social skills are faulty, that autistic children are usually to blame and need altering. New research shows clearly that this isn't so, as I talk about on my blog. Autistic people use a genuinely different way of socialising and collaborating, and can often communicate and collaborate well together. But, the difficulties arise when an autistic and a non-autistic person try to understand one another.

Let's say we have a five year old autistic girl, Sam. Sam is asked to sit still on the floor at school during 'circle time.' Sam does not sit still. Sam gets up and wanders round. What's potentially happening here?

Firstly, let's look at how the classroom may appear to Sam. Not all autistic children will see this exact effect, when in noisy, busy, fluorescent-lit spaces. Some do. In this, perhaps the teacher becomes invisible in the sensory chaos.

Photo courtesy Ann Memmott
[image: Overexposed photo of a busy, cluttered classroom.]
Secondly, Sam may be able to hear people talking across the entire school. Next door, moving in the hallways, chairs scraping, bells sounding, planes overhead, clocks ticking. It is a deafening, bewildering experience for those whose hearing is designed to detect oncoming danger, and so who listens to everything, everywhere, all the time. Often, the teacher becomes impossible to hear. That’s a reality of autistic hearing, for many.

Thirdly, Sam may find sitting on a hard floor intensely painful, and doing so becomes torture. Autistic sensory differences may mean things tolerable for others are beyond our ability to cope.

Fourthly, Sam may have Restless Leg Syndrome (“RLS”). Some autistic people do. Researchers suspect it is due to a chemical imbalance that causes intense feelings of rising uncomfortableness, often in the legs. Usually the only quick way to stop the torment of it is to move sometimes. Look it up.

Fifthly, Sam may have a form of Ehlers Danlos Syndrome (EDS). Some autistic people do. It can lead to joint problems, pain, exhaustion, and extreme difficulty sitting unsupported. None of that is deliberate avoidance or attention seeking. Nor is it slumping in a chair because of a poor attitude.

Sixthly, does Sam also have ADHD? There’s a big overlap between autism and ADHD, and sometimes the ADHD is missed. Sitting and concentrating for a long time can be almost impossible for some, therefore, and breaks desperately need to be taken.

Seventhly, Sam may encounter what some autistic people may experience when in sensory hellish places or during too much social interaction—unusual brain activity. Not a full epileptic seizure, but 'spikes' in electricity in the brain, which can lead to unusual responses for a while. Those are entirely out of the individual’s control. It may lead to them ‘shutting down’ or ‘melting down,’ the former being a switch-off response where they cannot communicate. The latter resembling a temper tantrum, but it is not. Neither response can be ‘behaviour-trained’ out of them, as it is not a chosen behaviour.

Possible Reason eight, Sam may find that being jostled leads to intense pain, for example in circle time if the children are very close. An unexpected jostling can feel like being electrocuted. Sam may wish desperately to put space between themselves and potential pain etc, and may need a much bigger personal space zone.

Some autistic children flap their arms or shake their fingers in front of their eyes, for example. Finding our bodies is really hard, because we don’t have a good bodymap in our brains, so this helps locate which bit of us is where. Or it may be a way to regulate what we’re doing and feeling. Or it may be a way to understand how far away we are from other things. Making it stop is somewhat like stopping a Deaf child using sign language, but worse. Yet, I see ‘extinguishing repetitive behaviour’ on so many behaviour plans for the children. Some repetitive movement may be around RLS and EDS also (see above).

There’s another reason why Sam may be patrolling the outskirts of the group. We’re generally better at detecting oncoming danger. In villages and tribes, autistic people would have the hearing range and eyesight-detail that might enable them to be the very first to hear an oncoming predator. The very first to smell approaching smoke. Being on the outskirts, watching, listening, is potentially how a lot of communities survived. A village would benefit from such a lookout person, not distracted by social chatting and looking at the eyes of other people. That patrolling behaviour could be a perfectly natural autistic instinct, therefore. In class, it’s a behaviour that may need clarification that they can relax, that all is OK, that they can return to their place because there are alarms, sensors, and staff already taking care of that detecting. Number of behaviour manuals I’ve ever read this in? None at all.

A further possible reason for behaviour is around trauma. Too many autistic children are victims of traumatic experiences at the hands of some others, and go on to show clear symptoms of PTSD. Escape responses or other trauma responses are not then ‘being naughty.’ They are from a place of terror. Behaviour plans take little or no notice of this possibility, in my experience.

All autistic behaviour has always been thought of as faulty, until recent research has helped us understand its wider purpose.

So, what can we do to potentially help Sam to hear, see, relax, and not be in pain? Let's think.

First, Sam’s medical team may wish to do some autism-friendlier testing for those medical possibilities of RLS, EDS or epileptiform ‘brain spiking.’ It may be worth someone doing an investigation for ADHD, too, and a general medical checkup for any other pain condition or illness. Many autistic children do not register pain and illness in the usual ways, and so may not be able to explain these. Mindful of our own son, who played sport with a broken foot for some weeks, not registering the pain he was in. Thus, medical teams thought it was just bruised.

Can Sam's class not have fluorescent lights or blinding spotlights? Can they be switched off if it’s bright enough outside? Can Sam have sunglasses perhaps, or a baseball cap to cut out glare? Can Sam trial noise cancelling headphones perhaps? Can Sam be allowed to sit on a comfy chair, to avoid collisions and to enable better support and less sensory pain? Can Sam have regular scheduled short breaks and a signalling system to say they need this? Can electrical equipment in the class (overhead projector, computers) be switched off to minimise noise? Can rooms be carpeted, if budget allows?

Can people please Ask Sam What Would Help. Capitalised, because strangely enough so many never think to do this. Whilst some autistic children do not use spoken language, all can communicate. Sometimes the behaviour is the communication. See below for involving autistic expertise in translating, if needs be.

Personally, I want to congratulate Sam for being in that class at all, and engaging in any way, given the obstacles. I start from thinking, "How fantastic to be in a class with Sam. This is my learning opportunity. What behaviour and attitudes of mine can I change?”

Certainly I'd want to bring in autistic specialists. That’s different from autism specialists. Autistic specialists are professionals who are autistic, and are able to interpret and decode autistic communication and behaviour. They can interpret autistic communication, and note any sensory difficulties that non-autistic brains may miss. Quite easy to find these days.

I'd want to affirm and support Sam, enabling them to be their best autistic selves.

Like any child, Sam may well try to get out of activities just because there's something more fun or less work. But that's not my 'go to' for autism. Generally autistic children want to learn and want to follow rules. If that has gone wrong, we need to think way beyond the toolkit for decoding non-autistic children, which is the one so often used.

Our autistic children are doing their best to survive in schools. We need to move beyond the old mantras and myths around reasons-for-behaviour, and into a present and future where we understand deeply and work collaboratively. Then, we have better experiences and outcomes for everyone.

Thank you for reading.
Share:

Autism Is Not "Behavioral"

Cal Montgomery

buoy
Photo © Teresa Alexander-Arab | Flickr / Creative Commons
[Image: A green buoy on the surface of a body of water on a sunny day.]
Autism is not behavioral. Atypical behavior is not autism. It is a consequence of autism. It is surface markers by which what is underneath may be suspected, diagnosed, and investigated. Altering behavior doesn't alter autism.

Everything we recognize has surface markers. Fear, for instance, may look like a cold sweat, breathing hard, and dilated pupils, but that is not what fear is.

ABA, the most popular monopoly for interacting with autistics, denies the "underneath." It says that the surface markers are all that matter. It is profoundly dehumanizing. It is also a worldview that is almost impossible to maintain.

When you call autism a behavioral disorder—and I am not touching the "disorder" part right here but I also do not accept it—you are focusing only on the part of the person that you can see, as filtered through your own neurocultural understanding. You are denying that there is something deeper.

Would that be how you would want people to relate to you?

When you say that autistic behavior has only four functions, you are denying that autistic people are moved, that we yearn and are repulsed, that we struggle to do the right thing against self-interest, that we tremble in terror and that we aspire. That we are human. Imagine any of the great poets rewritten to replace deep emotion and the human condition with attention and tangibles.

Would you accept that for yourself?

"They don't feel it like we do" is a dismissal of autistic humanity.

The fundamental core of allistic*/autistic relationships, at least where I am, is a refusal to take autistic humanity seriously, to accept that we are people with real perspectives and real understandings—no matter what our disabilities—that deserve to be taken seriously and treated with respect. These perspectives may not be readily accessible to others, but yet they exist. Instead, facile and frequently self-contradictory assumptions are drawn based on an assumption that the core of humanity is limited or absent, and autistic perspectives are regarded as innately deficient, if they exist at all.

The belief that rich personhood is incompatible with substantial disability, especially intellectual disability, drives this divide, so that personhood can only be acknowledged in those considered fundamentally nondisabled; and acknowledged disability is treated as inherently dehumanizing. It is not. Profound disability and profound personhood coexist everywhere.

Onto the dehumanized figure we project all kinds of horrors, and we become something to be controlled rather than someone to empower. And we return to ABA, a technology of control, of altering the surface behaviors while ignoring what lies beneath.

A child does not become more human because they become more familiar to those who deny their humanity. Aping the majority culture does not take away minority status. It merely makes them more palatable to those with power over their lives.

Is palatability the goal you would choose for yourself?

This is what you are doing when you say autism is behavioral. You are participating in a movement to deny autistic personhood.

----

*"Allistic" means "not autistic."
Share:

It’s Time to Prepare the World for Your Child

Atlas, it's time for your bath
Photo: woodleywonderworks | Flickr/Creative Commons
[image: Young white child with short dark brown hair
embracing an enormous globe of the earth.]
Maxfield Sparrow
unstrangemind.com

Ray Hemachandra recently published an essay on his blog that reads like a love letter to/about his adult Autistic son, Nicholas. In the essay, Ray muses about how quickly time slips by, and how suddenly it seems that his son is transitioning from school to adult life and all the possibilities and struggles that includes.

“For an adult child, parents and families soon no longer have school IEP meetings to fight for rights, accessibility, and inclusion. But many of the same questions we wrestled with in the school setting extend into adulthood and society: Will he or she be isolated or included? How do we foster more inclusive communities broadly, but also more specifically take steps to ensure our child feels a part of the world, not an outcast? So many disabled and autistic adults experience isolation and often depression.”

Ray shares many worries about Nicholas’ future, but then turns his thoughts around and says that worry isn’t helpful. He points out that parents must do all they can to help their children, but in the end parents can’t determine how their children’s lives will turn out. Your child’s life is your child’s life, not yours. Worrying too much will eat away at the precious time you have together. Trying to over protect your child will limit them and leave them unprepared for many of life’s opportunities and possibilities.

Most crucially, Ray writes: “We miss something here. Developmental delay means that much life development happens in adult life for autistics, after age 18 or 21—maybe even more so than it does for us the rest of us.” That’s such an important point. As a 51-year-old Autistic, that’s been my experience: we don’t emerge fully developed at age 18; we are growing and changing throughout our life span.

That is the first thing you must do to prepare the world for your child: join the fight to extend services. The sooner you join that fight, the more years you will have to work to help establish what your child needs as they grow.

Beth Arky’s older article about Autistic people aging out of the system describes several possible solutions different parents and organizations are approaching to address the issue of Autists aging out of the system, citing data that suggests 40,000 Autistics per year are turning 21 or 22 (the age at which services stop varies from state to state). Some of the solutions Arky’s article describes are more workable if parents have access to large amounts of money. Other solutions are problematic and Arky specifically reports on the dangers of setting up a segregated community for Autistic adults. It is so important to fight for your child’s future and it is important to start learning right now—no matter how young your child currently is—about the options and issues coming up in your child’s (and your) future.

It’s also really important to pay attention to what services your child is getting right now. An ABA group called The Daily BA made a video that highlights how important it is for you to pay attention. (There are two things I should warn you about concerning the video, in case you decide to go watch it: it’s heavily pro-ABA, and it is a high-risk seizure trigger as the first three seconds of it are flashing at a rate faster than 3 hz. I wanted to warn you before I gave you the link to the video.)

Disclosure: if you’ve ever read anything I’ve written, you probably already know I’m against ABA. You might be wondering why I’m telling you about a pro-ABA video: It’s because the video unconsciously explains why you should not rely on ABA to prepare your child for their future. Quoting the video:
“I think one of the impending crises we’ve got right now is that these kids are getting great services, they’re getting fantastic services and they’re getting a lot of services. The issue I see is we’re getting now these providers that only work with kids and are not transitioning them and we work with adults obviously, all the way up to 80, but when we get those folks they are not prepared for moving from 35 hours to now 2. And they don’t have the functional skills. [...] They might be able to read and they might have all the academic stuff but they don’t have how to ride the bus, they don’t know job skills. So we’re taking that and we suddenly have a lot less hours. That’s quite a dilemma. I think the only way that’s going to get fixed is as the activist parents who helped vote to get their kids these services follow their child through this transition to adulthood and vote to get more funding because that’s the issue right now.”

I think the BCBA I just quoted from that video highlights two important things. One is that ABA is not getting the stellar outcomes that we should expect from a therapy that dominates the market as the “only evidence-based therapy.” Why are we allowing one therapy to lobby so heavily that it’s often the only thing insurance will cover, if it’s dumping non-transitioned adults into a world that’s not prepared for them nor they for it? The BCBA mentions 35 hours a week of therapy. Autists are getting intensive therapy like that for years. Parents: do not settle for therapies or educational systems that only teach academic literacy and don’t do anything to prepare your kids for adult life!

Another important thing the BCBA says in the video is that parent activists are the ones who need to dig in and change the system. He’s completely right! Leaving aside my feelings about ABA specifically, the “autism industry” caters to the “perpetual child” because that’s what a wave of parent activists before you told them to do. A 2011 report in Disability Studies Quarterly looked at the images of autism and found that parents presented autism as the face of a child 90% of the time. The authors looked at the feedback loop among parents, charitable organizations (75% of depictions of autism were child-only narratives), fictional books (90% children), narrative films and television shows (68% children), and news media (four times as much coverage of autistic children as of autistic adults) and pointed out that the closed loop excludes the voices of autistic adults, resulting in “a barrier to the dignity and well-being” of all Autistic people.

More specific to the topic at hand, this feedback loop has informed the autism industry that Autistic children are the only worthy targets for services. So now it’s time for parents, as the only close stakeholders who are getting heard, to step up and say, “hey, my kid is going to be an adult some day. Autistic children become autistic adults.

Parents need to lobby for more funding for adult autistics so that their children will have the services they need in their 20s and beyond.

Parents need to educate everyone: policy-makers, doctors, teachers, and other parents of autistic children. Find opportunities to speak about the problem of low funding and services for adult autistics. Every parent worries, like Ray Hemachandra wrote, about how their child will survive and thrive after they are gone. Working to teach everyone about the importance of continuing services and education for Autistic adults will help you cut through some of the anxiety about what your child will do when you are gone. You can help to build a better world for your child right now.

Parents need to insist that their child’s education begins introducing transition material early. There is so much to learn when it comes to living independently, with or without supports. For example, no one taught me how to manage money. Maybe everybody figured someone else was going to be teaching it to me. Maybe everybody saw how well I could read and assumed I must not need help with anything else. Whatever happened, someone dropped the ball and I ended up out in the world with no idea how to earn, spend, save, or invest money.

Your kids deserve better. Make sure they are learning what they need to learn and not getting dumped out of the system in their early twenties with an education so uneven it leaves them vulnerable and unnecessarily struggling. We autists take longer to develop and we are still learning new things much later in life than non-autistic people. I realize I’ve just set another load on your already overburdened shoulders with this. You’re in a different phase of childhood and might already be feeling overwhelmed by the demands of the present. I get that. Parenting any child is hard work. But future you will thank current you for carving out the time to think about and work toward these goals now. Your child will not be a child forever and this world is still not ready for your child. We’re all out here trying so hard to change that and we welcome you to join in with this important fight because your child’s future depends on you.
Share:

On ABA: They hate you. Yes, you.

Amanda Forest Vivian
adeepercountry.blogspot.com

Content note: Includes discussion of discrimination and abuse by teachers and ABA practitioners, and a photo of a child in ABA therapy receiving an electric shock.

----

I always think about Danny, who was not really named Danny. It's too bad I can't use his real name because it's one of my favorite names. I'm sure he's forgotten me, but I can remember his name, his face, his favorite subway train, and the words he made up.

He was a kid I met this summer at the school where I interned. I have written about him several times, sometimes at length. And although he was my favorite kid at the school, that isn't why Danny is always surfacing in my mind, tiny in his big t-shirts, flinging himself around and reciting things.

It's through Danny that I found out for sure, this stuff is about me.

Because the first thing people use on us is always, "It's not about you." When I was a kid, when I first started reading about autism rights, it was so instinctive: of course it's wrong to say "cure autism now." Of course it's wrong to say autism is a tragedy, a disease, it's wrong to give kids electric shocks, it's wrong to say you thought about killing your kid in a video about eliminating autistic people from the gene pool. Like Sinclair says it's wrong to mourn for a living person. All this stuff was plain and clear and bright, and I was autistic, and I was being attacked.

Right?

Well, not to anyone else.

Because, of course, if I told anyone I was autistic, they said I was lying, or I had a different kind of autism that made me smart and talented, so I wasn't like Those Kids, the kids who needed to be cured. And that I should think about their parents, about the money and time to care for a person like that, about the dreams that are shattered when your kid is really autistic—not smart autistic, the real kind.

So in my late teens when I put myself through my paces, when I figured out my deficiencies and set myself to systematically eradicating them, one of the deficiencies I eradicated was my use of the word autistic. Because you shouldn't use words people don't understand. And you shouldn't use words that will make someone feel bad, someone who has a kid who's Really Bad, Really Disabled. Because you're not that.

And I met some autistic kids and they were not much like me, and I didn't know to apply what I knew about myself to them, because I couldn't see what they were feeling inside. But I liked them. Then I met some people with intellectual disabilities and I liked them too; after a brief nervousness because some of them looked so different from me, and made noises I didn't understand, it was easy to like them. They were people who liked things, some of them the same things I liked. I could see that they weren't on the surface very similar to me, but I liked being around them almost more because of that, because it made me feel happy and chastened to misjudge them again and again. To be proven wrong when I thought I could quantify them just because I knew more words.

So by this point, I was pretty much sold, even if I wasn't Really Autistic, on the idea that people with developmental disabilities matter. Because I was around them all the time and it was obvious they mattered. But still, I felt my position was that of an outsider, an ally. I had opinions, but I didn't necessarily feel that I had much right to talk about them; I didn't feel I had as much right as the parents or teachers of people with developmental disabilities.

And then I interned at this school.

And I started out thinking: wow, ABA is so cool. I've heard negative things about it from other Not Really Autistic people, but who am I to talk about what these Really Autistic kids need? They can't even talk. They might bite themselves or something. What the hell do I know about that?

And then I met Danny and the other kids in his class. High-functioning kids. Verbal kids.

Tony, who had been nonverbal a few years before, was incredibly hardworking and sweet. When he went into the school director's office and turned out the lights as a joke, I laughed, but she said, "Tony. Look at my face. How do you think that made me feel?" She stood there looking grim until he apologized.

James was stressed out and upset; one of his teachers leaned towards him, staring fiercely into his eyes, talking with cold, strained-sounding words, the kind of voice I called "static" when I was a kid. James looked scaredly back at her, wriggling his hands around in his lap. "James," she said. "I know you're upset. But what you're doing with your hands looks silly." This boy, all the tension in him being channeled into something harmless, something she had to look under the table to see. His tension was silly. His discomfort was an inconvenience. He was eight or nine years old.

And Danny with his words. "Danny's an interesting kid," the school director told me. "He likes to be in charge." Danny and I were walking, holding hands, and when I responded with concern when he told me he was tired, another teacher told me, "He's playing you." It's true that Danny was a bossy little boy; when we played restaurant, he replied, "No, we're out of that" again and again until I ordered the food he wanted to pretend to make.

And his love of subway trains spilled out everywhere. He was supposed to write a story about a sad princess, and he did, but half the story was about the princess's friends taking her on the subway to cheer her up. He was supposed to write a crossword puzzle and the clues were things like, "Transfer is available to _____ North." The school was full of subway maps, since many field trips involved subways, and Danny would sometimes just lean over a desk, pressing his face into the shapes and colors, whispering his favorite schedules to himself.

Danny just liked words. When he was using his special words, the weird words he scrounged for or made up himself, he would find himself jerkily hopping across the room, speaking in a squeaky voice, his small face tense with excitement. "Presentation" was a weird word for movie, "document" was a way to talk about the letter he had typed on the computer for his parents. "I went to the barber," he said when I commented on his newly short hair, and then, with a rush of joy, "!but I like to call it the hair shop!"

I like words too. It was hard to watch Danny's teachers nudge him, sit down with him, say, "Danny, the word 'presentation' is a little weird; you need to say 'movie.'" It was hard to watch the way they looked at him, pointedly, until he stilled his hopping and lowered his voice to a more standard pitch. When Danny found out my middle name is Wood, he completely tripped out on it, hammering pretend nails into my stomach and giggling, "I'm gonna build something out of you!" "Danny," a teacher said, "don't be weird. You and Amanda were talking about names."

It was the word 'weird.' Nothing foreign my whole life. Tracing words and shapes in the air, crossing myself, my mom asking me a lot of questions, "Have you been feeling the urge to do that lately? Why do you do that?" with so much static voice it was clear I'd better keep my hands as still as possible when she was around. Running jerkily up the stairs at school, I couldn't help myself until I was fifteen or sixteen, despite the older boys laughing to each other—"is she trying to race you?" Movement just consumed me that way. And being a thirteen-year-old who said "suppose" and "quite" when no other kids did. Just loving words too much, finding it hard to stay away from the strange ones. And getting too excited. Being weird is not that alien for me.

So my divisions broke down a little, because I was watching a kid just like me, and I was learning, in very specific, qualitative terms, what other people thought of people like me. I was so nervous about keeping myself still and using the right words because I thought they wouldn't let me intern there if they knew I was actually like Danny, that I didn't think he was weird at all. All of Danny's teachers had been taught to grimace and say how annoying it was when he talked about trains. They watched The Office, but they never ever laughed when Danny told flat, self-referential jokes on purpose, twisting the ones he had been trained to say. I thought Danny was funny. Every time I talked to him I felt nervous about doing something that his teachers would think was wrong, and I also felt bad about perpetuating the attitude he was being taught, that none of the things he loved mattered.

So from specific to general, from Danny to James and Tony, to Max and John. John's teacher made him walk, in stiff, clean steps, and if he started doing anything that looked like skipping or jumping, she grabbed his arm, said "No," forced him again and again. Max liked to move his arm in circles while he was watching TV, so he was hauled off into an office, pushed down into a chair, had mouthwash forced into his mouth while he cried. They told me they were narrowing it down, he was moving less and less. Max and John didn't talk. James and Tony didn't talk as well as I do. But I move too much, and I move wrong, especially when I was a kid, and in that school I saw what they do to kids who move wrong.

I realized that, actually, a lot of it was about moving wrong. Or talking wrong, if you could talk. Or just taking too much initiative--wanting to make up songs, like Danny did, or playing a practical joke, like Tony did. That these kids looked and acted different and the school wanted to control them and make them as still and docile as they could possibly be. Watching them treat hopping, rocking, and neologisms like you'd treat a bomb on an airplane--it was like being at summer camp with a kid from the south, sitting in a car uncomfortably while he said he'd kill a gay person if they ever came near him. Wanting to say, no, it's not anything important; I'm like that, see? But I didn't talk in the car, and I didn't talk in the school.

This is too long. It's hard to even explain it. I just have to say, for the millionth time, that this whole functioning level thing—yes, it matters in certain ways. I can buy and cook food for myself, while high-support autistic people probably can't. I can hide the way I move and talk better than other people can. But this doesn't really have much to do with politics, because when people claim that "cure autism now" and the disease model and the Judge Rotenberg Center are not about me, well I beg to differ. The only reason they're not about me is that I'm old and verbal enough to not be vulnerable to that kind of abuse. They would be all too happy to practice it on me if they could. Autistic people do not get abused because they are low-functioning, they get abused because they do weird things.

So, the old-school ABA trials? With Lovaas?

This is a kid getting an electric shock:

[image: Black-and-white photo of an autistic child
receiving an electric shock as part of ABA therapy.]

This is why:

[image: black-and-white photo of a child who is
stimming by holding their hand in front
of their face, and also toe-walking.]

If you were in the wrong place at the wrong time, the wrong age, the wrong functioning level, this could be your life.

This what people like them think about people like us.



This post was originally published at adeepercountry.blogspot.com.

Author's disclaimer: This is a nine-year-old post and when I wrote it, I didn’t have close Autistic friends or much familiarity with self-advocacy or disability rights, except from reading. I don’t disagree with anything I said, except the part about being able to cook, but I would say a few things differently.

1) I obviously can’t speak about all ABA therapists/techs or schools. I will share a story though! When I was first blogging and vlogging about my internship experience, I exchanged messages with an ABA therapist who agreed that the school I interned at was doing certain things wrong, and recommended a better ABA school for me to intern at.

It was the same school.

2) I once read a thread of Autistic people discussing this post on a forum, where people criticized the post for speaking about the staff at the school as a monolith. But I want to clarify that—at least at this school, but I gather at ABA schools in general—they were a monolith by nature. All the teachers and staff had to follow the behavior plan which targeted the child’s “behaviors,” like stimming, neologisms, skipping, etc. and outlined how the child was supposed to be punished for doing those things. Teachers or staff weren't allowed to act in a way that deviated from this. So this is one case where saying “the staff did such-and-such” is not a generalization but just correct.
Share:

Autism Uncensored: A Dangerous and Spirit-Crushing Book

Photo © Charley Lhasa | Flickr/Creative Commons
[image: Plush red Elmo doll lying on asphalt.
A yellow chalk speech bubble has Elmo appear to be yelling "Help!"]
Maxfield Sparrow
unstrangemind.com

[Content note: Extensive discussion of restraints. Discussions of gaslighting, denying Autistic autonomy and competence, child abuse, autism profiteering, and similar goblins. Discussion of the 1960s medical view of autism as it continues to occur today.]

You may have seen the recent Washington Post article titled “Bystanders were horrified. But my son has autism and I was desperate,” an excerpt from Whitney Ellenby’s new book, Autism Uncensored: Pulling Back the Curtain. True to the exposé tone of the title, Ellenby describes in livid detail the day she wrestled her panicked son, Zack, by clamping his 50 pound frame tightly between her thighs and locking her feet together. The two spent over half an hour in combat as Ellenby dragged him inch by inch toward the red curtain beyond which the Sesame Street puppet Elmo was performing. Zack’s piercing shrieks alarmed onlookers who screamed at Ellenby to stop, threw an iced drink on her, and spat on her.

When the venue attempted to kick Ellenby and Zack out for causing a disturbance, she told them the ADA (Americans With Disabilities Act) gave Zack the right to reasonable accommodations to access public venues, and she was Zack’s accommodation.

I learned from reading her forthcoming book that Ellenby began her career as an ADA lawyer. She had a dream of fighting the huge battles. I’m picturing her mind set on something like a cross between Spencer Tracy in Inherit the Wind, and Gregory Peck in To Kill a Mockingbird. She went into ADA law starry-eyed about all the great work she would do, but became frustrated when the bulk of her work turned out to be things like getting down on all fours to measure doorways and stalls to see if they were up to code. That didn’t feel important enough to her, so she switched to a boutique adoption firm. Then she became pregnant with Zack, and thought she would take a little time off to give birth but soon be right back in the thick of things at work.

The first half of Autism Uncensored is a brutal description of how angry and bitter Ellenby became at her son, Zack, when he turned out to be autistic. Ellenby feels like giving birth to Zack was some kind of punishment for her sins, and expresses that belief through declarations like, “After weeks of being entombed by numbness, my heart is finally giving way to the realization that I’m being justly punished.”  “Zack’s autism is collateral damage for a life poorly lived. I just never imagined the punishment for my bad deeds would be inflicted on my innocent child, or be so brutal, so permanent.” “I’m chained to this denigrating, unpaid forced labor with no tangible reward for all my sacrifice.” “I will be incarcerated and tied to him for the rest of my life, a prison sentence” “I can’t pretend this is anything but punishment. At its very worst, autism feels like a living, walking, breathing nightmare.”

The book could use a thorough editing for typos and word usage—writing “synchronicity” for “synchrony,” or “bespectacled” for “bespangled,” for example—but I don’t think the last quote of my previous paragraph was a typo. I believe the author fully intended to say “autism feels like…” because she believes that autism is not a word to describe the structure and function of her son’s brain, but rather a punishment inflicted on her. Like many martyr parents, she has co-opted her son’s identity and cast herself in the role of victim. Autism is not a neurotype; autism is what was done to her. And in between sessions with her hair shirt, she makes it clear that she thinks she is better than this: “I am a well-educated woman. I am an accomplished civil rights attorney. I am a woman who spends hours every night on her hands and knees scraping feces off walls.”

Sometimes her concept of autism is as a separate beast, something outside and inhuman: “Autism is angry. The infuriated beast of defiance is rearing its head, snarling, writhing, biting, only I’m not trying to defeat the beast or even subdue it. I need its passion and power. It’s this very passion that fuels the resistance with which I must align myself, harnessing and channeling that live energy.”

I have heard people defend the phrase “combat autism” by saying that they love their child and hate autism. When the average person says they’re fighting autism, it feels bad to me but I try not to say too much because I’d rather win hearts and minds, than be too direct and alienate anyone I might otherwise have influenced. But when Whitney Ellenby was fighting autism, it was very much not a case of “love the child; hate the autism.” When Ellenby writes about fighting autism, she is talking about fighting Zack. 

Ellenby wrote very clearly about hating Zack, and she used the kind of language I’m not used to seeing outside medical books from 40 and 50 years ago. “He’s not even a boy really, but the shell of a boy, an exquisite cutout of a child with no actual stuffing. He is damaged ... deformed ... disgraced. And his disgrace is my own. This is what my glorious womb has produced, a profoundly dysfunctional child.”

The author tells us that she has intentionally chosen to use the present tense when writing her history with Zack as if everything were happening in the moment in order to achieve maximum emotional impact. She succeeded in that aim; her book is harrowing. I felt clobbered reading the first half of Autism Uncensored. After enough clobbering, I just felt numb and empty.

The second half of the book starts when Ellenby’s daughter Cassie is born. Cassie is not autistic, and at first Ellenby loves her more than Zack because she is typical. “Cassie exhibits everything Zack did not, and more. I feel truly appreciated, indispensable, valued. I’m not just smitten but truly grateful to my daughter for allowing me finally to know true reciprocal joy and interdependence. So this is why so many parents describe newborns as transformative, revolutionary and all-encompassing. Now I get it. Now I can’t pretend that I don’t.” Zack clearly sees the overwhelming favoritism going on and in a panic about his own survival he does things to hurt the baby.

Ellenby complains about all the extra work of policing Zack while taking care of Cassie. She wishes she could get rid of Zack and start fresh with Cassie and forget she ever had a child who wasn’t normal. “I cannot see a way out or how will it [sic] ever subside in the face of such obvious, lasting discrepancies between my two children. I’ve never been one to repress my fantasies, the theme of which are now overwhelmingly versions of 'starting over.'” “What if Keith and I could start over with just her and then have just one more typical child? Now that we know it’s reproductively possible, the notion is intoxicating, the vision of Cassie as the older sibling to another adorable healthy baby, rounding out the family to the four I’d originally envisioned, before all hell broke loose.”

Ellenby realizes she’s sharing a horrifying thought and tells the reader “no one who hasn’t walked in my shoes gets to judge me.” She reasons that it’s natural for her to feel this way after everything she has endured from Zack. But around 60% into the book, Ellenby’s affections for her children suffers a sea-change. The catalyst? Cassie starts talking. Now Cassie uses logic to resist doing what Ellenby wants her to do. Cassie treats her mother to streams of insults: “From now until forever, I’m going to be friends with everyone except you!” “And I don’t even like the way you dress! And you try, but you are not even funny!” “And you know what? Daddy is SO much more funner than you! And he’s a better cook, and he’s better at video games, and he looks better in his clothes than you do in yours.”

Ellenby can’t stand it and begins to hate her daughter, opening up room to love her son as she uses the ambiguity of his silence to layer dehumanizing mystical interpretations of autism onto him. “Unbelievably, the scales of enjoyment between my two children are tipping in a direction I had not thought possible.” She begins to really appreciate Zack’s silence. “Zack’s own economy of words works to our mutual advantage—I talk too much, he too little. Somewhere between us lies a normal amount of speech.” From this point on, she always writes about Zack with a stereotypical new age-y praise of his innocence and higher spiritual nature.

Around the same time, she starts noticing that people will be overwhelmingly supportive and helpful when she makes a public announcement about Zack’s autism. People on the train provide an endless supply of tissues and plastic bags when Zack soils himself unexpectedly and Ellenby announces it’s due to autism. Gang members at a water park band up to protect and assist Zack on the giant water slide after she gives an impromptu speech about Zack’s autism on the steps of the water slide. Ellenby wrote in the first half of the book that she was Zack’s accommodation and he “rides” her. By the second half of the book it is becoming clear that she is riding Zack, using his autism for a social payout to herself.

Ellenby describes a turning point at which I sense she first began to realize she could commodify Zack’s autism for money, social status, or both. Ellenby stages another wrestling match with Zack, this one to get him inside a movie theater to see Happy Feet. This time, instead of springing the performance on an unsuspecting and captive audience, Ellenby goes into the theater alone first to announce that she will be dragging Zack in during the previews and that he’s got autism and this is part of his exposure therapy.

The theater-goers silently watched Ellenby drag her son into the theater—kicking, clawing, biting, shrieking—and then, “A few members actually kneel to give me strong hugs; others pointedly ask me for my business card so I can work with their disabled children, cousins, grandchildren. Once again history has been made in the life of my child. Savor it.”

Ellenby ends her book by telling us about her business and all the good it is doing in the world of autism. The book reads like a business card. It’s the kind of book meant to drum up more business and I think it will be highly successful in that regard. And I think that’s a horrible state of affairs.

Ellenby began dragging her son places after she felt Zack was not making enough progress on ABA therapy. She decided mother knows best and began her own program of forcibly dragging him places he didn’t want to go so he could see for himself that it wasn’t so bad once he got there. The author spends a few pages of her book enumerating the flaws of ABA and, for a moment, I agree with her:

“A flat prohibition against certain behaviors wipes out a panoply of ritualistic comforts for an entire population, some of whom may very well depend on them to function at all. And if we suffocate those adaptive behaviors, even when the child is learning, are we not teaching the child to be ashamed of his own natural impulses, telling him his are disfavored or deviant? And would we do the same to typically developing children, or to ourselves as adults?”

“But something even more sinister is going on here: we are undermining Zack’s autonomy and sense of self-worth. ABA protocol is literally robbing Zack of independence and bodily choices, because we are making them for him.” Yet what is Ellenby’s Tackle and Drag Therapy but a super-intense experience for Zack of completely losing his autonomy and bodily choice?

Ellenby felt like a small fish in a big pond as an attorney; making her life about autism makes her feel like a much bigger fish. Again, she co-opts Zack’s identity to fill her ego needs: “I am autism and it is me; I live and breathe it, fully intoxicated: it’s in my marrow. And most unexpectedly, it gives me profound joy and sense of purpose to acknowledge it. It doesn’t matter that I was trained to be an attorney. I’m meant to be something more feral, more hands-on, more intimate and immediate. After a decade spent wandering the wilderness as a little attorney lost, possessing raging zeal with no clearly identifiable group to ignite it, I have come home.”

Ellenby admits she’s not even got the proper training to safely restrain a child. With her attorney instinct, she makes sure to tell people not to do what she did. Yet she uses such scientific phrasing when she describes her “experiments” and writes about her perception of the success in such glowing terms many vulnerable parents will do exactly what she describes, as closely as possible to the way Ellenby did with Zack in search of some magic outcome.

And for all Ellenby’s criticism of ABA in her book, when I Googled her business I found that it’s based on an ABA model. And in her Washington Post article, Ellenby admits that what she is doing with her Tackle and Drag therapy is exactly what ABA therapists do if the 40-hour work week of ABA therapy isn’t making a dent in a child’s behavior. She told Zack’s doctor about the Elmo show, after the fact, and he explained that: “as a last resort, in a controlled way and only after years of therapy, a licensed behavioral clinician might have physically restrained Zack to force him to confront his fears, had he not responded to more gradual methods.”

As Sid Ziff once quipped, this is not a book to be lightly thrown aside; it should be thrown with great force. But it is in the midst of being published and the publisher has defended the author, using some particularly nasty rhetoric against Autistic people who don’t like the book. It will be published.

Ellenby has said no one should speak badly about her book unless they’d read every word. Well, I’ve done that now and I feel soiled and deflated. Demanding that Autistics who are upset by one bite of her book must go on to consume the whole thing before being permitted to have an opinion is the demand of a bully who knows they are requiring vulnerable people to traumatize themselves with her words.

While Ellenby has, perhaps unwittingly, exposed a lot of the ugliness and unsuitability of ABA, she embraces the behavioral paradigm still and enacts the very worst versions of it. Autism Uncensored is a traumatic read and should be resisted as much as possible. I’ve read it for you and saved you the trouble and trauma. Instead of this revolting mess, I suggest you read the following:

Respectfully Connected

Blog: respectfullyconnected.com
Facebook: www.facebook.com/RespectfullyConnected

"Authors of this blog come from a wide range of backgrounds and between them have an enormous amount of parenting experience. They all share a desire to parent in a way that both models and facilitates respect and connection, and that values all kinds of diversity. The authors of this blog also share the experience of being part of neurodivergent families."

"This blog exists to share the authors stories, with the hope they will empower and encourage other parents on their journey with the knowledge that there is a gentler, more compassionate way of raising autistic children than much of society tells us, and that close attached relationships are very possible."

We Are Like Your Child

Blog: wearelikeyourchild.blogspot.com
Facebook: https://www.facebook.com/WeAreLikeYourChild

“We Are Like Your Child [is] a collaboration of Autistic (& occasionally, other disabled) adults. We discuss our difficulties & how we work with or around them from a neurodiversity & social model of disability perspective.”

WALYC was organized in response to the many parents who refuse to listen to what Autistic adults have to say about the lived experience of autism, telling us that we can’t possibly have any useful insight or advice because we’re “not like their child.” But you can’t compare an adult to a child and the members of WALYC often discuss challenges many people’s children of all ages face, along with strategies for circumventing or overcoming those challenges.

The Thinking Person’s Guide to Autism

Oh, wait, that’s where you are right now, reading this. Well keep reading TPGA! There is so much collected wisdom here from Autistics, parents, therapists, and more that it would take a shelf of textbooks to hold it all (and the valuable content continues to grow.)

These three sites alone will keep you very busy reading and learning things that will actually help you and your child. Reject Ellenby’s Tackle and Drag therapy and anything that comes from Dr. Lovaas and his ABA practices. Boycott Autism Uncensored and tell everyone why Autistics deserve better.
Share:

Eye Contact: For The Recipient's Validation Only

Emma Dalmayne
autisticatedalmayne.com

Screenshot from ABA Video on Tantrums (Content Warning)
[image: Young Filipino girl with long black hair seated at a play table, looking
unhappily up at the camera, while an adult leans in and talks at her.]

Imagine if you will a quiet world, well ordered as long as everything has its place.

Imagine a warmth, cozy and comfortingly familiar. Your own warmth, just your own.

Now imagine headlights, bright and intrusive as in a winters night, burning and intense. They glare through your warmth and safety, and push your eyes deep into their sockets until it’s unbearably painful.

Those headlights are someone’s eyes making intense eye contact with yours.

“Look at me!” The mouth beneath the eyes commands. "I don’t want to, it hurts…" you think.

“This is all part of the problem you see?” The voice says to your parents who nod sadly, “Lack of eye contact, this we must stamp out. It’s a sign of non-compliance, a sign of disregard. The child’s lost, you see…?”

"What?" You think, baffled, "I’m right here!"

Your parents sign a form giving permission for intense Applied Behavior Analysis to begin.

Forty hours per week.

Forty hours of look at me/quiet hands? No more fluttering your hands in a language only you know, no more flapping your hands watching golden drops of happiness fly from your fingertips as you hum … no more angry bolts of lightening flying from your nails as you shake your hands so hard your wrists pound.

No more you.

----

I’ve realized something today.

Eye contact, who’s it for? It’s not for the autistic child. It's for the recipient. It’s for their own validation to reassure them that you know they exist. That you are aware they are speaking that you comply. That you acknowledge them.

It’s not about the child; it’s no benefit to the child to do something that in many cases is painful.

Intrusive.

It’s for them.

They don’t understand the avoidance of eye contact, the rapidly moving hands, the hum and the bounce of the feet.

The rhythmic rock you employ to comfort, a rock that’s universal if they would only look back to a parent rocking a babe: safety.

Predictability.

“Lines are forbidden,” intones the voice. “They are a sign of the child wanting to control the environment they are in! When he starts to make one mess it up immediately,” your parents nod. “Take back the control.” The voice says smugly.

"But I need those!"You think. "They help me make sense of, well everything. They make me safe, when everything else is changing I know they are there!"

The practice of eye contact is not for the child. Too often, society has the misconception that if your eyes are not raised when you or another is communicating, then you have something to hide.

What if that something is your soul?

What if it’s all you have left in a world that’s to bright, loud. and fast? It then makes sense that so many Autistics find peace in natural surroundings.

Bird song, rushing water, and the swish of wind in the trees is surely preferable to beeping horns, bright reflections on glass, and the mindless babble of a hundred conversations at once.

Once words leave a persons mouth where do they go? Do they keep going? As I’m sure many autists hear the echoes of words said long past.

Imagine.

As I know others can’t truly ever know what it’s like to be autistic, to be so comfortable in your own company that a day alone is heaven. Imagine not getting that time, that quiet.

----

Do not seek to validate yourself through your child, if they do not wish to make eye contact do not force it.

If you do, you seek nothing but self service, for the validation that you exist is there in front of you.

Your child.

Validate them. Embrace and champion them. They are not there for your definition, they are there because you made them so.

----

A version of this post was previously published at autisticatedalmayne.com.
Share: