Last night, I fell asleep with a mild fever. My life chased me into my dreams.
In my dream, my client breaks something while I struggle to help his mother in the kitchen. His ABA team makes him stay up all night cleaning, and in the morning a troop of therapists convenes to discuss how he needs even more ABA. I’ve met many of them before, but I’m having trouble telling them apart, and can’t decide which of them might be sympathetic to my objections.
I argue passionately for less ABA, more communication training. A supervisor sneeringly asks if I mean that faked “facilitated communication” nonsense. The scientists in the room shake their heads sadly. I respond that RPM leads to completely independent typing– look it up! I also point out that a lot of different things fall under the category of “facilitated communication,” mentioning a video I’ve seen in which the only “facilitation” necessary is a gentle hand on the back of the person typing. You can’t control what someone types that way, I insist– just try it! I volunteer to type while a scientist tries to control my typing with a hand on my shoulder. She cheats abominably, but still can’t force me to type what she wants.
The room grows fuller, as adults with physical disabilities arrive to make the point that being a disabled adult is not a horrible sentence. Almost every hand in the room is raised with points to make, and I have more to say but despair of being called on any time in the next hour…
Yesterday, in my real life, an ABA tech mentioned children who were getting 40 hours a week, plus other therapies.
I asked if she didn’t find that tragically sad– the idea of small children having to work more than 40 hours a week. She said she’d rather they had to do 40 hours a week now, and grow up to be functional members of society. (There was a time when I would have agreed with her. The ABA industry mixes up some strong Kool-Aid.)
I didn’t have a way to put my disagreements into words then– there were so many of them crowding my brain. I think I can do so now, though,
1) False dichotomy. There is plenty of evidence (some of it even in ABA studies) that ABA is neither necessary or sufficient for independent adulthood. In less technical terms: Some kids get lots of ABA and grow up to be independent adults. Some kids get lots of ABA and do not grow up to be independent adults. Some kids get no ABA and do grow up to be independent adults.
2) If you’re going to argue that ABA at least gives a better chance that the kid will grow up to be an independent adult, you’ll have to show me some darn good math. You’ll also have to take into account that scientific studies on autistic kids who grow up without ABA barely exist at all, and you can’t make a logical argument that one condition is better than another when you’ve only researched one of the two.
3) I’m also going to lay down some serious objections to the idea that a person needs to be a “functional member of society” in order to have a valuable and meaningful life. There are many people in my life who have inspired me, made my life better, or loved me, or who I have loved. None of those things has ever hinged on whether or not the person could earn a living, speak verbally, live independently, or pass as “normal.”
4) Even if I accepted the premise that ABA=independent adulthood, I would still object. Because, “functionality” at what price? The price of a childhood? An individual’s personality? Their self-esteem? Their happiness? I would not sacrifice any one of those things, and I have known and read about autistic adults who believe that ABA stole those things from them. That alone should give anyone pause– and I do think that if most parents and therapists and ABA techs were truly aware that this was the potential trade-off, they’d hesitate, too.
There’s more to becoming a well-rounded adult human being than learning to sit still or tie one’s own shoes or participate in social niceties. There’s emotional development, and I believe that childhood– an unfettered, exploratory, play-filled childhood– is an integral and irreplaceable part of that development. For counterexamples, look at the emotional damage done to children who lost their childhoods too early– to abuse, to war, to parental drug abuse, to any of the things that make children grow up too fast. There are an uncanny number of similarities between adults from abusive childhoods and adult autistics– and all too often, those are one and the same. And frequently, that abuse has, at least in part, taken the form of a relentless battle on the part of adults to turn the autistic child into something they are not and can never be– a non-autistic adult.
So, if those are my options, I will happily volunteer to change an autistic person’s diaper every day for the rest of my life, or cook their meals, do their shopping, help them cross the street, or whatever other “functional adult” tasks they can’t do alone. Because I love the children I work with, exactly the way they are. And while I do want to help them acquire as many skills as possible, I wouldn’t do it at the price of changing who they are, losing their sense of fun and humor, or making them feel that they aren’t good enough, or teaching them that behavioral control is more important than their comfort, their safety, their right to communicate naturally, and their happiness.
Please note: This post is a work in progress.
Behaviors targeted for modification or extinction must meet the following criteria:
- The behavior creates a physical safety risk for the client or other people, or causes significant damage to the surroundings. Behaviors may not be targeted for elimination/modification on the grounds of being atypical, embarrassing, annoying, or socially unexpected. Behaviors that involve social appropriateness may qualify if they involve the client physically interacting with strangers (eg, inappropriate touch, attempting to remove someone’s clothing, grabbing other people’s belongings, etc.)
- All reasonable accommodations have been implemented to alter the antecedents before any attempts are made to modify consequences. In normal language, this means that you address the triggers for the behavior (such as stress, situational factors, and the behaviors of other people) before using tactics to discourage the client from doing the unwanted behavior.
- The client is given a clear verbal and/or visual explanation of what behavior is unwanted and why. The rules given must be clear, explicit, and consistent. If the behavior has an identifiable communicative component, the communication must be acknowledged and the client must be offered an alternative means of communicating the same message and having it respected (eg, if you teach a child not to hit others when touched, you must also provide them with another method of clearly stating “don’t touch me.”)
Behaviors targeted for acquisition must meet the following criteria:
- They aim to improve the client’s independence skills, self-care and ADL skills, or effective communication (preferably in whichever modality the client acquires most easily). Other behavioral goals can be established if and only if: they will improve or expand the client’s opportunity to gain an education or participate in activities of the client’s choosing, AND the same opportunities cannot be provided by reasonable accommodations.
- The behavior or skill being acquired is one that can be reasonably learned by rote. No studies exist showing a more effective way for the client to gain the skill. Dyspraxia and other physical difficulties must be acknowledged as possible barriers to skill acquisition. If practice appears to cause significant distress to the client, the program should be re-evaluated.
- The goals and reasons for them are clearly stated to the client verbally/visually. If the client is capable of providing input on goals, their input should be taken into account as much as it is with a neurotypical who is being trained in a skill.
- The client must be allowed the maximum possible participation in session planning.
- Parents and clinicians shall not speak about the client in their hearing as though they are not present.
- The term “noncompliant” should be replaced by something more neutral.
I’ve been seeing a lot of discussion online lately about ABA-based therapies.*
Can these therapies ever be done right? How can you tell when a therapy is damaging even though it is play-based, uses no aversives, and doesn’t seem unpleasant for the child undergoing it? Are stressful therapies ok in small doses?
Most people, including most of the ABA therapists I’ve met, agree that one of the most important things for any person to learn is how to say “No,” verbally or not. I’d like to describe two different ways I’ve seen an ABA technician work on this with an autistic client. On paper, the two ABA programs sound about the same (Note: (the people who perform the “therapy” sessions with the kids are trained by private companies and not licensed as healthcare providers or educators in any other way, to the best of my knowledge. Program supervisors generally require some form of degree in psychology). Similar stated goals and methods. But observing the techs in action reveals important differences.
The client is 11, minimally verbal (uses single words spontaneously and short sentences with prompting). Therapy consists of 2-hour sessions twice a week after school.
The tech treats the lesson plan casually. She and I and the client lounge on the floor of the living room, or go about the house working on various skills, most of them skills that are often taught by an OT or PT (dressing, using the toilet, preparing to go for a walk, eating a meal). At one point, the tech leans over and tickles the client lightly. The client pulls away a little, and the tech immediately prompts, in a friendly tone of voice as though giving advice to a friend, “You know, you can say ‘I don’t like that,” or ‘please stop,” or…”
“Stop, please,” says the client. The tech immediately stops, and smiles at the client,
“Thank you for telling me,” she answers.
This kind of exchange happens maybe once or twice a week.
The client is 7, mostly nonverbal, and has 2 hour sessions several times per week. The client is required to sit at a desk for most of the session, although some activities are done while sitting on the floor instead.
The client is engaging in a favorite activity at the table, mixing colors of play-doh together. The tech reaches over into the activity space, deliberately interrupting. The client pushes her hand away, and she ignores this, putting her hand back in the way so the client can’t continue playing. “nuh,” the child says quietly, sounding annoyed, not looking up, still intent on the activity.
“Stop,” the tech corrects, prompting him to use the specific word that has been pre-determined in his program as a “goal.”
“Stah,” mimics the client. The tech withdraws her hand, nods as if in satisfaction, and makes marks on her tally sheet, obviously grading the child’s performance. This process is repeated multiple times per session.
Case 1 isn’t perfect, but I think it’s a good shot at managing a necessary evil in a relatively decent way (the necessary evil being that, in order to make sure a kid knows how to object to things reliably, you pretty much have to provide or at least allow something they dislike for them to object to). The tech didn’t push, didn’t insist on a specific response, didn’t judge… just offered an alternative. The client was treated as a human being.
Case 2 makes me feel sick to my stomach. There’s no camaraderie, no politeness, no explanation, and not even a pretense of respect for the client’s wishes. Just training, and frustration. This is more “pure” ABA– no distractions, no additional variables, no unplanned interaction between client and therapist. But what upset me most was that the tech seemed to care only about reaching the objective, having the client perform to a pre-set standard, and not about whether or not the client was experiencing and understanding the power and value of being able to make a request and have it respected. There seemed to be no acknowledgement of the fact that the goal of the work (and the only possible acceptable reason or excuse for these therapies at all) is to provide the client with a skill that is, at least to some degree, useful to them. Communication that will be understood by others, no matter the format, is one such goal, and I think worth even some pain, though of course it should be the minimum of pain possible.
Missing from both is another crucial marker of respect: apologizing to the client for doing something they disliked. And, in a larger critique, it is very problematic that, in this world, someone saying “please stop” is more likely to have their needs respected than someone who simply pulls away, and someone who pushes someone else away is more likely to be labeled as “aggressive” than “self-advocating.” That needs to change. In the meantime, there are better and worse ways to teach someone how to lodge a verbal protest. I got to see both.
* Note: there’s a lot of confusion about terminology, especially in America, where anything that can plausibly, or even implausibly, be labeled “ABA” gets the title so as to be covered by insurance companies. The briefest overview I can provide is that Applied Behavior Analysis (ABA), a particular subdiscipline of behavioral psychology, has given rise to a wide range of “interventions” and “therapies.” The classic ABA therapy is an aggressive and rigorous program of DTT, based on the work of Lovaas, who wanted to make autistic people become, or at least appear, “normal”… and cure men who acted in any way effeminate or homosexual. Most autistic people consider this to be despicable at best and outright psychological torture at worst. More modern approaches such as PRT now apply behavioral principles in ways that are gentler, more flexible, more naturalistic, and more enjoyable for the client… but their goals are often (though not always) still based on the premise that becoming more “normal” in various ways is a reasonable goal for autistic children. Most autistic self-advocates and their supporters are deeply uncomfortable with this notion, too.
My apologies for the length of this post.
How do we teach children what they need to know in life? What do they need to know?
They need, at some point, some measure of self-control: the ability to delay gratification, to think before acting, to modify aggressive instincts, to consider the well-being and desires of others, and to endure things that are boring or yucky or uncomfortable, from sitting through class to going to the dentist.
Observe the average 18-30 month-old child, and you will see what people are like without this control. Toddlers are 90% “id” — desire unmodified by conscience or inhibition. They grab what they want, become violent toward anyone they disagree with, and refuse to cooperate with anything they dislike. You can’t function in society this way. (Well, you can, but you have to already have a lot of money and/or political clout, and you certainly won’t have many friends).
At the other end of the spectrum is the person who has been trained to completely sublimate their own will. As a society, we consider this more acceptable, even necessary at times. Anyone who joins the military steps into this role– choosing to follow another’s orders above all else. But that is an adult’s choice to make, with adult reasons for doing so. There’s a reason why you have to be 18 to enlist. Brainwashing children to do nothing more than follow orders is abuse.
Finding the middle ground is hard, even with typically developing children. Cultures and experts disagree about when and how to discipline children, and about what level of self-control they should be expected to have at what age (either physical, such as toilet training, or psychological, such as not talking out of turn).
Ideally, I think the modern-day parent imagines explaining every rule and its reason clearly, and the child responding “Oh, that makes sense” and following the rules from then on. But anyone who has spent any time caring for a child knows that this very rarely occurs. Inevitably, one is faced with a child who has preferences that are incompatible with their own well-being (e.g., refuses to eat healthy foods), the well-being of others (e.g., refuses to share), or the general necessity of a given situation (e.g., won’t follow classroom policies, won’t get in the car when it’s time to go, etc. etc. etc.).
We want, at least in this day and age, for our children to have minds of their own. But we also want them to comply with the majority of our wishes. Somehow, we have to find a balance.
When your child does something wrong, do you slap them? Yell at them? Reprove them gently? Order a time-out? Restrain them physically? Options get more complex as children get older. They can be sent to the school principal, grounded, given detention, required to apologize or otherwise make reparations, assigned more responsibilities, stripped of privileges, guilt-tripped, spanked, publicly humiliated, and so on. And although many parents insist they know exactly how to fix their children’s misbehavior, I won’t believe that until I meet a child who behaves perfectly… and then I’ll just think I’ve run across some sort of “Stepford Wives” style of mind control.
The science of behavioral psychology can help. We’ve demonstrated, for example, that children mimic what they see and hear. The injunction “do as I say, not as I do,” is probably the most useless phrase ever used in child-rearing. So if we want nice children, we should be nice people. But we also know (perhaps more anecdotally) that doormat parents bring up children who walk all over them (and everyone else). Being nice doesn’t do the job alone; you need structure and rules.
We know that rewarding desired behavior works better, on the whole, than punishing unwanted behavior. If kids hear “no” constantly, they start to tune it out, unless you manage to break their will completely. But punishment has its place too– if you ignore your child punching other children to get their toys, that behavior is not going to just go away on its own. Unless the other kids beat up your kid and they learns their lesson that way. Letting your child learn from the consequences of their mistakes is a good strategy in some cases, but not in all. You don’t just let your kid jump off the roof to find out that they’ll break a leg.
I think we can all agree that, at some point, too much or too severe discipline becomes abuse. We know that abuse does not have to involve physical harm, just as mockery and the silent treatment are genuine forms of bullying. But we can’t seem to agree on how to bring up good kids (any more than we can agree on what to do with adults who break the rules).
It’s even harder to know how and when to discipline children with developmental disabilities. It would be abusive to teach them nothing, and just let them do whatever they feel like all the time. Every person deserves the opportunity to work hard and improve themself; this is something human dignity demands of us. Every person deserves to be taught to be as independent as possible (note: independence is not self-sufficiency. Being able to decide what food will be placed in your mouth by an aide is as much an act of independence as being able to feed yourself). And every person deserves the opportunity to interact with others, to be a part of society.
It is on this last point, I think, where we get a lot of the disagreements between the disability community and certain parents and therapists of disabled children, particularly those on the autism spectrum. These parents and professionals assume that, in order to have good opportunities in life (social, educational, career), the disabled child must be taught to hide as many markers of their disability as possible.
Now, it is true that societies are largely unaccepting of those who break social rules and mores. So rigorous programs are put in place to teach autistic children everything from “keep your pants on in public” to “say please and thank you” to “don’t drool” to “don’t stim” to “make eye contact.”
And somewhere in there, well-meant intervention becomes abuse. It becomes “Quiet Hands” and pathologized childhoods. It gives the messages, however unintentionally, “don’t be who you are” and “you do everything wrong.” It results in teens and adults who are depressed and self-hating and feel guilty for their every instinct, habit and preference. People who don’t know that they have the right to say “no” even when someone is doing something terrible to them. Their whole lives have been a constant litany of others telling them what to do, how to act, what constitutes friendliness, when to smile– how can they trust themselves, or even know their own mind, after all that?
But how do we determine which things are worth teaching? I counsel parents to forget about their child looking or acting “normal” and focus on them developing self-determination skills, but somewhere in there, kids DO have to learn to keep their pants on in public or they won’t be allowed to go to school. Or someone will call CPS and claim that letting children run around without pants is a form of sexual abuse, because nudity is such a serious taboo in our culture.
It’s important, as I’ve written before, for children to be able and allowed to say “no” at times. Two of the most important stages toddlers go through are “no” and “why?” Saying “no” asserts a sense of selfhood, the understanding that it is possible to have one’s own preferences and to control aspects of reality by expressing those preferences.
“Why?” occurs when children contrast their newfound independence with the fact that they cannot always control what happens to them. I believe that the question “why is the sky blue?” is not just idle curiosity, it is shorthand for “help me understand why I cannot make the sky be any other color.”
When children with developmental disabilities refuse to keep their pants on, we need to ask why. Perhaps they are reaching the “no” stage later… or the “why” stage. Because these children often can’t verbally ask “why,” no one thinks to offer them explanations, and their questions about the world go unanswered. Taking off the pants may be a way to ask “why do we have to wear pants?”
Or it may be a protest, to something related (maybe the child wishes to be toilet trained) or unrelated (the parent refused something the child wanted, so the child refuses something the parent wants). Often, parents of a disabled child assume that the child either fails to understand the rule “pants on in public” or is simply being obstinate. But it’s very important to establish what’s actually going on.
Chances are, the kid understands the rule—most developmentally delayed children understand more than is immediately obvious. Is the child then objecting to pants for the sake of objecting, or because there’s a sensory sensitivity issue? The first may call for some form of discipline; the second for finding a different kind of pants.
There are those in disability rights circles who think we should also take this as an opportunity to challenge the very concept of pants and view them as a source of oppression. I don’t disagree on principle (why should anyone be forced to wear pants anyway?), but change is slow. For now, if you want to go out in public, you have to wear pants of some kind. Or perhaps leggings or shorts or a skirt. If there is a battle of wills between parent and child, offering choices may allow the child to feel heard and result in cooperation.
There are hard choices involved in teaching and disciplining a child with certain disabilities. How do you help a child develop independence and self-confidence when the majority of things they do are “wrong,” even dangerous? How do you ensure that they have time to just be themselves while also making sure you provide them with enough training that they will be given as many social and educational opportunities as possible?
The beautiful girl I call Tangles provides a good illustration of this point. Tangles is 10, with diagnoses of global developmental delay, profound mental retardation, ataxic cerebral palsy, and possible autism. Her mother and I agree that she’s smarter than most people think, but so far she’s got very limited ways of expressing it.
She’s very friendly, and likes to approach people and animals and touch them. The problem is her ataxia, which means she has trouble controlling or stopping a motion once she initiates it. The result is that when she reaches out to get someone’s attention, she doesn’t touch them; she hits them. And she’s pretty strong for a 10 year old girl. Her attempts at “hello” are sometimes rough enough to make me wince.
Her family is used to it. Her mother corrects “gentle, please,” and “careful, honey” again and again. When I’m at the playground with Tangles and her younger sister Curls, Curls apologizes on Tangles’ behalf: “she doesn’t mean to,” and “she doesn’t understand what she’s doing,” and the kids they play with regularly seem to have simply gotten used to being smacked on occasion.
But this isn’t a sustainable solution. Tangles is getting bigger and stronger. If she hurts someone badly by accident, or even gets past the age where adults are comfortable shrugging her actions off, I worry that she’ll end up being restrained or sedated regularly. I can’t bear the thought of seeing that happen to this vibrant and loving girl. So somehow, for her own sake, she has to learn not to hit.
I suspect most behavioral therapists would train her simply to keep her hands down, to not touch others at all… but that would be punishing her for reaching out and trying to interact. What a heartbreaking notion. What if it kept her from wanting to socialize at all? I can’t help feeling there must be another way.
I often remind her (usually right after she’s managed to thwap some poor startled person before I could grab her) that it’s not OK to touch strangers who aren’t expecting it, to touch little babies, to touch people without their permission. I don’t know how well she understands. I remind her to reach for people’s bodies rather than their faces. We work on “gentle touching,” having her stroke her hand along my arm rather than striking out in a slapping motion. But I think often she simply acts on impulse, forgetting to follow the rules that she does know intellectually.
The other night she hit Curls in the eye. Curls usually responds to her sister’s slaps with a mild scolding, and occasionally hitting back, so when she starting sobbing, I knew Tangles had managed to hurt her worse than usual.
“No! Don’t hit! Not in the face!” I reminded her. She was already wandering off as I continued exhorting her to try and be more gentle, and a casual observer would think she didn’t notice, let alone care, that her sister was crying. Her face was serene, and she continued with her normal activities.
But then I heard her saying “oh-oh” (her version of “uh-oh”), which is something she says when she’s upset, and I knew she understood what was going on and was bothered by it. She’s still officially “non-verbal,” and it’s relatively rare for her to actually try and say something, so I knew this was a big deal to her, too.
“Oh honey, I know you didn’t mean to hurt her,” I told her and gave her a hug. Then I went back to comforting Curls and applying an ice-pack to her face… but my deeper sympathies were with Tangles, who doesn’t even have a way to tell her sister that she is sorry.
How many things, I wonder, does she feel bad about without us knowing? How much does it hurt when we scold her over and over for something she doesn’t mean to do in the first place? Does it hurt her to hear people say that she doesn’t know any better, when obviously, she does know and is trying to improve? How do we teach her all the things she needs to know without convincing her that she is a broken human being in need of constant fixing? How do we support her desire to interact with the world while trying to change the way she does it? I can only hope we’re on the right track.
I just watched this wonderful clip from “60 Minutes”
(Description: Derek Paravicini is a profoundly disabled man in his early 30’s, and a musical prodigy. Born 3 months premature, he is blind, autistic, and has profound cognitive impairments, resulting in the inability to answer many simple questions such as his current age. The newscaster interviews him, his father, and his music teacher, who has been his close companion for the past 25 years. Derek is a musical savant who can play hundreds of tunes from memory, in any key or musical style, as well as composing works of his own. An intensely social person, he adores meeting with his audience in person and taking requests from them, and does a wide variety of charity concerts. His music teacher describes meeting the young Derek when the boy shoved him off a piano stool in order to get to the instrument, and realizing, as Derek banged out imitations of everything he heard, that music was not only Derek’s passion but the language in which he communicates most fluently.)
I adore this story, in spite of the occasional use of pitying language about Derek. Kudos to them for not actually mentioning autism at any point– I only learned about that diagnosis from the wikipedia article, although I was fairly sure of it just from watching him in the video.
But at the same time, I cannot help but see this as a cautionary tale. There are so many ways it could have been tragically derailed.
The hero of this story, aside from Derek himself, is the music teacher, Adam Ockelford, one of those rare neurotypicals able to come to profound understandings about someone who processes differently. Think: a young child interrupts a music lesson this man is giving to another child, forcibly shoves him aside, and begins violently banging on the piano with the edges of his hands, his elbows, and even his face. A dozen typical responses suggest themselves, including:
- The child is seen as destructive, and removed/disciplined before the teacher even has the opportunity to hear that he is playing an actual tune.
- The teacher recognizes that the child is playing a tune and dismisses it as mere useless parroting (a horribly frequent explanation of autistic interests. There’s a special kind of idiocy required to claim that both imitation– think the “Who’s on First” routine in the movie Rain Man– and inability to mimic are both tell-tale symptoms of the same disorder. Autistic kids are alternately punished for repeating something they notice, as when they echo sounds they find interesting, and chided for not aping the actions of a therapist during mock play in behavioral training sessions).
- The teacher might see musical potential but refuse to teach the boy until he learns behavioral control, better motor control, language… any number of things that might have been outright impossible at that age. Instead, this teacher was clever enough to pick the kid up, deposit him across the room, and play as much as he could– a few bars– before the child returned and shoved him away from the keyboard… realizing that Derek would understand this form of communication in a way that he did not comprehend any other. He notes, brilliantly, that Derek learned about emotions from music, the reverse pattern from how most people do it.
I’m not saying that all autistic children have savant potential. But it’s clear to me, from every autistic I’ve ever met, that they are able to do so much more if we meet them on their own playing field rather than forcibly dragging them onto ours.
More importantly, I’m frightened by what crucial things we may overlook in trying to fit these children into the mold we envision for them. When we hope for normalcy, or strive to make them “fit in,” we may do them– and ourselves– a grave disservice.
I was talking to a good friend today, one with what I consider a “neurotypical bias”– the idea that, to some extent at least, typicality is an ideal or at least an average that should not be deviated from too far. We agree that every child needs a method of communication, but disagree over how best to provide that tool. We have different philosophies on behavioral therapy, obviously. He feels that most of these children will benefit from at least a certain amount of being taught how to fit in– and, to be fair, I can’t always disagree with this.
Certainly, more educational and social opportunities are offered to people who can “pass”– if not for neurotypical, then at least for neurodivergents who are well-enough “behaved” to keep their weirdness under wraps in public. It’s hard to weigh these concerns– of being outcast, shunned, barred from mainstream classrooms, institutionalized– against the erosion of ego and emotional stress of a child who is going through rigorous training to repress most of their inherent tendencies.
But there are other risks, too, to “normalization.” I don’t know how much of Derek’s childhood was spent seated at an ABA table, being forced to memorize skills slowly, tediously, by rote. Certainly the way he greets people is classic of the “robotic” responses autistic kids are taught– regardless of who he is meeting, under what circumstance, Derek does and says the exact same thing. Is this because the repetition is easy/restful for him, or because he’s been drilled, like a circus seal, in the exact words, intonation, body language that constitutes a “proper” greeting, to the point where he couldn’t come up with a way of his own if he tried? Other clips of his speech suggest a playful and humorous temperament– how much more of that might we see if he hadn’t been trained so exactingly?
“They have to be able to get along in the world, at least,” my friend says in defense of behavioral intervention. I know what he means– I’ve seen the looks of hatred thrown at children (and their families) when those children flap, echo, stim, rock… And see above about opening doors to the world. But what doors might we be shutting?
Derek seems to have no understanding of time or number– he cannot hold up three fingers (“I don’t know how to do that that” he tells the interviewer, holding up an open hand in confusion), give his age, or estimate how long he has been playing the piano (“maybe a year?” he offers uncertainly). Chances are, he could have been taught these things. Hours of repetition, of “intensive behavioral intervention,” may have been required, but he could learn. At the expense of how much time spent with music? Maybe even at the expense of the vast proportion of his brain that has obviously been devoted to music rather than to “normal” skills? Would that have been remotely worth it? What if the trade-off was musical genius versus toilet-training, or the ability to feed himself? Personally, I hope everyone would agree it’s worth helping him with self-care if that’s the price of his incredible talent.
But where do you draw the line? How do you know when a child’s obsessive interest is the basis for something so remarkable? What if it’s a talent that isn’t as widely appreciated or marketable as musical skill but brings the person as much joy as Derek’s concerts bring him? How do you decide what to prioritize as “what they must learn” and balance that with what they want to learn? There is quite a lot of evidence that savants may lose their extraordinary abilities when forced to focus on other things– including, sometimes, verbal language (see Oliver Sacks’ essay “The Twins”). That’s a much harder trade-off to imagine.
All too often, though, I suspect we sacrifice great talents for far pettier things– for the ability to sit quietly, recite times-tables, make eye contact when “appropriate,” participate in a game of baseball. I am friends with at least two autistics who lost savant skills– permanently– because of time they spent on psychiatric medications– one tried these medications willingly, as treatment for anxiety; the other, tragically, was forcibly medicated as a teenager for “behavioral problems.” (Incidentally, this is far from the worst that has happened to them– both have been severely abused in multiple ways for being autistic, and much, though not all, of that abuse was done in the name of making them more acceptable to the neurotypical majority).
Does it always have to be a trade-off? Is there a way to have the best of both worlds? I don’t know. Certainly, even non-savant autistics who are much more mainstreamed often enjoy neurological advantages most others lack– eidetic (photographic) memory, amazing powers of concentration, synaesthesia, superior logic skills, hyperlexia. But how often do we fail to acknowledge these gifts because we are too focused on deficits? Shouldn’t we instead encourage them, even though it may be at the expense of being able to “get” Seinfeld or tie shoelaces? Would every such child be a genius? Of course not. But I’m willing to bet almost all would turn out to be a good deal more gifted than we think possible now– and far more importantly, I think they could be a lot happier than we imagine, too.
I cannot help but grieve at how often we must tragically miss the potential for beautiful things, talents and ideas invaluable to both the individual and society at large, because we lack the patience and open-mindedness to accept a child who thinks, communicates, and acts in ways that are strange to us. Thank you, Adam Ockelford, for seeing beyond the obvious, for looking at potential rather than impairment, for being willing and able to speak to Derek in the language that made sense to him. Your empathy and insight allowed something truly miraculous to occur, and I hope that we can all learn to follow your example.
The following is a slight editing of something that I wrote in an email, in response to a fellow psychology student who expressed concern about an autistic child he helps provide therapy for, a 9 year old boy who “smacks his own head repeatedly with his fist when he is frustrated.”
For those not familiar with behavioral psychology, ABA is “Applied Behavior Analysis,” and refers to both a field of study and the resultant “therapies” — a range of operant-conditioning-based methods used to modify behavior. It has many good uses, but can also be used problematically at times.
In theory, ABA consists of analyzing the functional reason why a person engages in a certain behavior (e.g. covering one’s ears serves the function of blocking an aversive noise stimulus, a tantrum may result in a child getting a treat they wanted, etc.) and then changing the situation such that an undesired behavior no longer provides the function it did before (e.g. steadfastly refusing to give in to tantruming will teach the child that tantrums are not an effective way to get treats).
Sometimes, however, the importance of the behavior’s function to the child gets ignored in favor of reinforcing the behaviors that therapists, doctors, parents, and teachers find preferable.
Julia Bascom wrote: “behavior is communication.” This applies to everyone, in many ways, but it applies with particular force and importance to people with autism or other developmental disabilities, for whom speech may not come easily.
For example, when I was a kid, I suffered from severe sinus headaches sometimes. It felt like someone was trying to blow up my skull like a balloon. Sometimes it got so bad I’d punch myself in the head, or smash my head against a wall…. which may seem like the least sensible thing in the world to do when your head already hurts. So why did I do it? I doubt I could have told you then, but now I can give three distinct reasons:
1) Sheer frustration, the way you might kick a car’s tires or punch a wall when you’re furious and need to lash out at something, to let off steam.
2) Because, as bad as the sharp, sudden pain felt, it provided a break, a momentary distraction, from the constant and unbearable steady pain of the headache.
3) Because it provided me with a pain– or anything, really– that I had control over. Being in pain on purpose felt better than being in pain and completely helpless.
So when I hear about the boy you work with who punches himself in the head, the very first thing I ask myself is “what could he be experiencing that is so aversive, so miserable, that punching himself feels preferable?”
Are there fluorescent lights in the room giving him a pounding headache? Is he wearing clothing that feels like bugs crawling all over his skin? Is there a computer making a high-pitched noise that the adults in the room can’t hear? Is he just pissed off because, while everyone’s trying to get him to play the ABC game, he’s spent the last hour trying to communicate something important to his caretakers and can’t figure out how to make himself understood? (These are mostly explanations I’ve heard from adult autistics about why they had meltdowns or tantrums as children.)
Saying he’s doing it because he’s autistic is no more diagnostic or helpful than saying he’s doing it because he’s human. And trying to get him to stop this behavior without addressing the underlying cause would only teach him to hide the fact that he’s in pain.
I don’t know if you’re particularly familiar with the “intense world” model of autism: an excellent and reasonably short overview can be found here: http://www.wrongplanet.net/article419.html But one more piece of evidence in support of it– and one I find profoundly disquieting– is that many of the symptoms that we see in autistic children, such as disturbed sleep patterns, inability to remain toilet-trained, refusal to respond sometimes to the point of near-catatonia, inappropriate levels of attachment, self-injury and destructive tantrums, are all symptoms also seen in deeply traumatized and severely abused children.
What if the ordinary world we live in, the things you and I experience on a daily basis and take for granted, are downright traumatic to an autistic child? If that is true, how do we justify training this child to hide the symptoms of their anguish rather than addressing the stimuli and environment that cause the trauma itself? This is why I cringe every time I see an ABA therapist report that they’ve “reduced autistic behaviors” in a child as if this is automatically a good thing.
Don’t get me wrong– ABA has some great uses, especially when it comes to stopping dangerous behaviors, but when it’s used to teach a child that they get rewarded for hiding their pain or stopping activities that make them feel better, I see it as an inexcusable assault on that child’s very identity– and a real danger to the child’s future safety and integrity as a person.
Children, including (maybe even especially) autistic children, are terribly anxious to please adults, and will do almost anything– at any cost to themselves– to make their caretakers happy. If we want to help autistic children, we must, above all, convince their caretakers not to ask the impossible– “being normal”– of them.
Sadly, a lot of the most hurtful things said to and about autistic people are said by people who think they know all about autism– including, I’m sorry to say, a lot of researchers and psychology students. I don’t just worry about the teasing, the blatant abuse, and the violence. In a way, those things are easier to fight back against than the subtler, but no less destructive, assaults that come from well-meaning folks who believe that everyone just wants to be as “normal” as possible. This assumption sends the very clear message to autistic kids — and introverts, and LGBT youth, and ethnic minorities, and anyone else who doesn’t “fit in”– that there is something fundamentally wrong with who and what they are. And that’s enough to break someone’s heart.
And just so you don’t mistake who I’m talking about, a lot of the most ardent autism self-advocates I know are not the ones who live “normal” lives– they are people who are nonverbal, or who require services to help them with ADLs– and, like people with any other disabilities, they still want to be in charge of their own lives and have their human dignity and autonomy respected.
[Note: ADLs are Activities of Daily Living— which can include anything from meal preparation to basic housekeeping to taking medication on a schedule]
It’s hard sometimes for relatively able-bodied people (myself included) to understand and remember that a person who is completely paralyzed can still be in control of his own destiny. That paying someone to help you eat or use the toilet can be as basic and non-embarrassing as paying someone to pick up your trash every week. That even someone with limited intelligence (such as a person with Downs syndrome) has hopes and dreams that need to be respected if she is to have any reasonable quality of life. That none of us are truly independent (we rely on others every day for our safety on the road, for services like plumbing, for the food we buy to eat, and so on).
The disability rights movement is about reminding people that our value as human beings is intrinsic and not dependent on how much we can accomplish. And that many of us can accomplish far more than you’d think if we’re given the right tools.
If Stephen Hawking didn’t have his voice synthesizer, people would treat him like an infant, talk about him as if he were not in the room, assume he was profoundly
retarded [note: I’ve been corrected on this terminology recently: while “retarded” is still used medically in some cases, many people find it deeply offensive, and the current preferred terminology is “intellectually disabled/person with intellectually disability”], and wonder out loud in front of him if he’d be better off dead. I wonder how many “low-functioning” autistic s are in that same position. I’m not saying it’s impossible for autistic people to also have severe intellectual disabilities, but the number who have been assumed “low-functioning” for far too long before someone learned to understand their communication methods is downright appalling.
Autistic people may not always speak, but they do communicate. And it’s up to us to listen.