The Autism Spectrum According to Autistic People

Autism neurodiversity
Autism neurodiversity

Invisible Abuse: ABA and the things only autistic people can see

young child lining up playdough in the colors of the rainbow from red to violet.

If you want to upset a self-described Autism Mom, all you have to do is tell her that ABA is abusive.

This argument breaks out on social media so many times every single day.

Autism is an unusual condition because the community is so sharply divided.

On one side you have the neurotypical parents and families of autistic children, and on the other you have the online community of adult autistic people, many of whom are parents to autistic children.

The two sides disagree on virtually everything, but arguably the most contentious subject is Applied Behaviour Analysis Therapy.

ABA Therapists and many families of autistic people hail it as the most effective, most scientifically proven way to help autistic children develop life skills such as speech, potty training, and going to the grocery store without going into full meltdown mode.

Autistic adults– many of whom have been through ABA as children– say that it is abuse.

You can imagine how that statement sounds to loving parents whose children adore their ABA therapist and who would never knowingly abuse their beloved child.

You can imagine how it feels to be told that the gold-standard treatment which is bleeding your finances dry so that you can help your child is actually abuse.

The difficulty is that when people hear the word “abuse,” they think of pain and violence.

ABA has a big history of those things, too. Its founder, O. Ivar Lovaas, used electric shocks to stop children from engaging in their obsessive, repetitive behaviours. He systematically trained them with equal combinations of love and pain to behave more like non-autistic children.

He thought he was saving them, turning a raw bundle of nerve endings into something resembling a human being.

One way to look at the job of helping autistic kids is you have to construct a person. You have the raw materials but you have to build the person.

-Lovaas

Whenever ABA comes up, so does Lovaas.  Autists point out that he used these same techniques to pioneer gay conversion therapy, which, like ABA, has also been proven to be deeply harmful to the human psyche. They also point out that while fewer ABA therapists use things like electric shock, it is still used and considered important by several institutions.

“But ABA has changed,” people argue. “My ABA therapist never uses punishment. It’s all positive and reward-based.”

That is very true for many people. Most ABA therapists don’t set out to hurt children. And yet, despite making ABA therapy fun and positive, the underlying goals of ABA have not changed.

And it is these goals that, like gay conversion therapy, do long-term damage to the human psyche.

The reason parents and ABA therapists can’t see it as abusive is because they can’t see it from an autistic point of view.

Let’s take a moment to look at some ABA in progress.

 

 

 

So? Did you see any child abuse?

Probably not.

How about here?

Or here?

Sure, the child was unhappy in the first video but the teacher was patient and she recovered, right?

And in the second video, they’re trying to teach children not to be disruptive, but they aren’t punishing the child or anything.

In all of these videos the children are never yelled at, scolded, shamed, or injured. They are praised and rewarded when they get things right, and often the kids seem to be enjoying the games.

No electric shocks, no aversive, nothing to make the experience traumatic, right?

Wrong.

Allistic people can’t see it, because they don’t understand how it feels to be autistic.

Let’s go back to that first video.

While they do not address it in the voice-over, if you watched it again you would notice how often the therapists take the children’s hands and fold them into the children’s lap.

You would also notice how often the child’s feelings are ignored.

In the first video, several of the children begin rubbing their eyes and looking tired, but they do not address this.

In the video with the girl in the supermarket, an autistic person can spot that she was getting overstimulated, exhausted, and was increasingly desperate to escape this environment.

In the video with the crying child, an autistic person wonders why she is so unhappy. Is she exhausted? Overtired? Overwhelmed? And when she stops fussing and goes back to doing the work, we can see the resignation on her face.

She isn’t happier. She’s just accepted that her feelings don’t matter and the fastest way to escape the situation is by complying.

In the last, you can see that ABA therapists deliberately ignore attempts to communicate or produce behaviours that have not been demanded by the therapist.

The child wants his mother’s attention. Would I ignore my child while trying to listen to what his doctor was telling me? Probably. But I would “shhh” or pat his arm to let him know that he was heard, and I would be with him in a minute.

Notice that ABA doesn’t tell you to go back to the child after and find out what they needed or wanted.

And that is the problem with ABA.

Not the rewards, not the silly imitation games. The problem with ABA is that it addresses the child’s behaviours, not the child’s needs.

Think of those happy little children in that first video.

Now understand that sessions like this are not a couple of hours a week. ABA therapists recommend that small children between 2 and 5 go through 40 hours a week of this type of learning.

40 hours a week.

No WONDER those kids are rubbing their eyes.

My allistic eight year old doesn’t do 40 hours a week of school. He goes to school from nine to three and gets a half hour recess and a half hour lunch. That’s 5 hours a day five days a week. 25 hours of active learning. And much of his class time is actually quiet reading, playing with learning materials, gym, or talking in a circle with his peers. So make it less than 20 hours a week of being actively taught.

Imagine asking double that for a preschooler.

Now consider that ABA is designed to ignore any protests the child might make.

ABA is not designed to consider the child’s feelings or emotional needs. 

I’m not making a jump when I say that. You can go to any ABA website and read what they say and you’ll see that there will be no discussion of the child’s emotional welfare or happiness, only behaviours.

To ABA, behaviour is the only thing that matters. ABA considers autistic children as unbalanced kids who need to be balanced out, and if you balance their behaviour, they are fixed.

“…what you need to do is reduce those excesses like the self stimulatory behavior, repetitive behaviors, and increase the skills. And then what will happen is after the child really learns a set of foundational skills; then they will start relating more to other people.”
— Deborah Fein PhD

 

As you can see from the above video, “self-stimulation”, one of the “excesses” of autism behaviours, is considered a kind of boredom fidget– something useless that replaces real learning and interaction.

When they are erased and replaced with “life skills,” then this is celebrated as a success.

Any autistic person will tell you is that this is NOT what stimming is.

Stimming isn’t just like doodling when you’re bored, or throwing a basketball.

Stimming is a comforting self-soothing behaviour which helps us reduce stress, feel more comfortable in uncomfortable environments, and regulate our emotions.

Many of us feel that our stims are a form of communication – just as a smile or a frown communicates something about our internal states, so do our stims, if you would just pay attention.  Moreso, in fact, since many autistic people smile when they are anxious or frown when they are perfectly content. Studies show that non-autistic people are terrible at interpreting our facial expressions. 

If my husband sees me stimming more than usual in the middle of the day, he frowns and asks if my day is going okay.  But many times he mistakes my emotions based on my facial expressions. My stims are better at translating my emotions than my face is, unless I’m actively animating my face in an allistic way for the benefit of my allistic audience.

Which is exhausting, by the way.

40 hours a week is too much for me so I can’t imagine how a small child manages it.

Grabbing my hands when I stim the way ABA recommends would NOT help my day go better.

It would be an excellent way to piss me off and make me feel frustrated and anxious, though.

It’s one thing to stop a child from hurting themselves by banging their head. It’s another to stop a harmless stim like hand flapping. You’re causing the child emotional discomfort just because the behaviour strikes you as weird.

Go back and watch some of those videos again, noting how often the autistic children are interrupted from hand-waving, making noise, crying, or otherwise trying to express and relieve their emotions.

Notice how often they get the child to make eye contact. Many autistic people find eye contact extremely uncomfortable.  The way the children’s bodies are touched and manipulated so frequently, in corrective redirection, is upsetting the children.  Their faces reflect confusion and sometimes distress.

But learning to tolerate discomfort is what ABA is all about. 

Watch that child enter the grocery store. See how she looks all around? The noise and the lights are stressful and distracting. She wants to please her family and get the cookie pieces so she goes along with the act of putting food in the cart, but after a while she is worn out and can’t stand it anymore.

The mother comments that if they relented at this point and took the child out of the store, her daughter would be rewarded for behaving this way.

That is probably true. If you are in pain, and you scream “Ouch!” and someone comes running and relieves your pain, you’ll probably yell “Ouch” again the next time something hurts you.

Is that… bad?

The parents say the ABA really helped their daughter.

Did it really help the child, though? Or the parents?

The grocery store isn’t any less noisy or bright or overwhelming. And the child obviously still finds it difficult to go in. Instead, she has learned to keep her feelings to herself, to try and focus on pleasing her family, and bottle up her stress inside until she can’t take it any more.

That’s a healthy thing to teach a child, right?

With time she may become excellent at this. She may be able to go to the store, put items in the cart, and go home without a meltdown.

But the meltdown WILL come.

It will come over something minor, some silly thing that seems like nothing and pushes her over the edge where she was already teetering. And they will wonder where it came from.  They’ll talk about how unpredictable her meltdowns can be.

It isn’t unpredictable to us.

We can see it coming. We can see that her autism hasn’t been treated to improve her life so much as to improve her family’s life. And while that is important too, wouldn’t it be better to find a solution that works for everyone?

Did they try ear defenders, and dark glasses?

Did they try encouraging her to stim if stressed?

Did they teach her a polite way to let them know when she has had enough and needs to leave the situation?

I don’t know. I don’t know them. I don’t know their child.

But I do know what autism feels like.

I know that ear defenders are not part of standard ABA protocols.  Instead of teaching them to understand their sensory needs and self-advocate for having their needs met, they are taught to ignore them.

I know that ABA demands the child’s attention but refuses to give attention back when the child demands it.

I know that ABA aims to be positive and rewarding for the child, but doesn’t allow the child to tap out whenever they need to.

I know that ABA considers vital emotional regulation tools to be problems that must be extinguished.

I know that neurotypical pre-schoolers are not usually expected to learn for 40 hours a week.

I know that neurotypical children are encouraged to express their emotions, not smother them.

I know that ABA believes in removing a child’s language tool like the iPad when they are naughty.  I notice that the ABA therapist working with the 8-year-old boy only handed him his communication tool in between “discrete trials.”

I know from activists like Cal Montgomery that even adult autistic people have their communication tools routinely taken away from them if they don’t “comply” to the demands of their therapists and caregivers.

I know that if I ask someone if they think it is abusive to remove a child’s only way of contacting their parents, or to ignore a child in distress, or to force a child into a situation that they find uncomfortable/painful, or refuse to help a child when they are suffering and overwhelmed, they will say yes.

As long as I don’t mention that the child is autistic, anyway.

Autistic kids are different, apparently.

Whenever autistic people protest ABA, we are told that we don’t understand, that we don’t know how hard autistic children are to live with. They talk about improving the child’s independence and argue that it isn’t cruel to teach a child to write or play with toys.

They don’t see how weird it is to try to systematically shape a child’s behaviour to teach them to play with a toy the “right” way.

They don’t see that 40 hours a week of brainwashing a child to put up with stress and discomfort without expressing their feelings might be a bad idea in the long run.

They don’t see how wrong it is to teach a child that their way of feeling comfortable and soothed is wrong and that ignoring your feelings and physical needs is good and gets you approval from your teachers and parents.

They don’t see that it is abusive to ignore a child’s attempts to communicate because they aren’t “complying” with a demand that makes them uncomfortable.

They don’t see how dangerous it is to teach a child to do whatever they are ordered to do, no questions asked, and to never object or say “no.”

They don’t think about the fact that 70% of people with ASD have experienced sexual abuse by the time they are college age.

They don’t think about how this person will learn to stand up for themselves or advocate for their needs when they were systematically trained in preschool never to disagree, speak up, or disobey.

Do what I say. 

Put your hands in your lap.

Don’t cry. Don’t complain.

Listen to me.

I won’t listen to you.

This is not abuse.

…But, you know, the kid gets bubbles and tickles so it’s obviously safe and totally okay.

What do we know?

Our feelings don’t matter anyway.

 

 

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338 Responses

  1. OK. The very very real and big problem here is WHAT constitutes Äutism?
    Let’s stop diagnosing “autism” from a grab-bag of different behaviours.
    Diagnosing Autism and then treating it from a set prescribed treatment, is as silly as diagnosing lameness, and then treating all lame people similarly.
    Autism is merely a description of behaviour, It has many many different causes and all need different approaches,
    Most of us Asperger’s people don’t consider we NEED help. We think all you so called ‘neurotypical people are boring, and uninteresting.
    People who cannot live alone and need help need help — but for their own particular problem.

  2. You hardly need another comment, but I want to thank you for writing this — especially about the grocery store, my lifelong nemesis to this day at age 44 (the music, and the motion-activated talking ads in the aisles, and the announcements, and the detergent aisle…). This has been a source of great shame because the grocery store is almost emblematic of “normal” American life, not least because consumption is so normalized.

    What always strikes me about these kinds of videos is that we expect of children what we would never ask adults to tolerate, or accept without question. Let’s take the grocery store. Today, one doed not have to physically go into a store to obtain food, in many parts of the U.S. anyway. There is grocery delivery of every kind in most metropolitan areas; there is ordering online and curbside pick up with almost no interpersonal interaction. There are food subscription boxes galore, in which one can receive the same things every week, or different things, or a combination. Indeed, for adults this is praised as simplification, automation, reducing mental overhead. There are neighborhood bodegas and farmers markets that can be far easier to manage and comprehend, spatially and size wise.

    All a long way of saying: There is less *real need* than ever before to force a child to suffer the abundant miseries of unbridled capitalism as presented in a large grocery store. Why is this “skill’ still being so forced on them? Why not teach going to the grocery store as a sort of emergency measure one may need to do if necessary, while also teaching kids the many far easier, pleasant, and even automated ways to get food — which are the same as “all of the ways we assume adults know of”?

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