On Self-Injury, Autism, and Behavioral Therapy
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.