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Archive for July, 2014

Normalization versus Normal Life

July 30, 2014 3 comments

So, the term “normalization” is something of a dirty word in disability rights circles, and especially in the autistic community. It generally refers to making a child put a lot of effort into trying to look, act, or speak in a more typical way for the purpose of making everyone else more comfortable around the disabled person. Proponents will tell you that, the more a child can “act normal” and “fit in,” the better they’ll get along with peers, the more education and career opportunities they will have, etc..

There is, of course, some truth to this: being able to “pass” for “odd” or “quirky” instead of “disabled” or “autistic” can have a lot of advantages, especially as an adult– from not having your doctor talk to you as though you were a child to being taken more seriously in the workplace. It won’t actually make you more friends, though, at least not real friends. And the cost to one’s self-esteem can be unbearable (if you can stand reading an emotionally devastating example of this, I highly recommend http://timetolisten.blogspot.com/2013/09/the-cost-of-indistinguishability-is.html).

But there’s another kind of normalization that’s important, and that involves others treating a disabled child like a normal person. This has to be done carefully, because of course you have to take someone’s needs and accommodations and abilities into account. But beyond that– too many people treat disabled children as though they are inherently fragile, or inherently tragic, or angelic, or younger than their age. Too many people seem to think that a disabled person can’t joke around, or use rude language, or have a bad hair day, or have questions about sex, or want to go to the mall with her friends, or even be shallow sometimes.

So I’m working on treating my clients like members of their age group. It doesn’t matter if a girl still wears a diaper at age 10: I can still compliment her hair and talk to her about fashion and current movies. Even if someone verbalizes at a two-year-old level and has only started using the toilet in the past year, if he’s over age 5, I’m going to make a point of saying that he’s going to the toilet or the bathroom, not the “potty.” I used to try and equalize us the other way around– saying things like “I need to go to the potty” about myself, and I still do this with younger children (as I suspect most parents do). But with older ones, I think it’s a form of respect to avoid using baby language, to take their preferences seriously, let them make choices whenever possible (even when it’s much quicker and easier to do it myself), and acknowledge that they are sometimes uncomfortable with the level of assistance they need. It’s hard to remember that a teenager who shows no shyness about my bathing her may still not want me to hold her hand in public. That someone who can’t lift his head without help still wants to be alone sometimes and have a feeling of privacy.

I suspect, from my observation of many parents, that it’s hard enough to learn this when bringing up a typical child. Loving parents hover, and embarrass their kids a lot with various forms of overprotectiveness and intrusion. How can you not have this habit after years of a child being dependent on you for absolutely everything? But a typically developing child will start to say things like “Aw, Mom, don’t cut my food for me. I’m not a baby anymore!” or “Aaaaahhh! Don’t come into my room without knocking!” And parents, slowly, get the message.

Kids who can’t speak may start throwing tantrums when they feel like too much is being done for them, may become deeply resentful of unneeded help and so have difficulty even accepting (emotionally) the help they do need. Or, if others keep treating them like young children, they may continue acting that young, being passive about things they are perfectly capable of doing themselves and not bothering to try expanding their skills. They may decide that it’s not worth the effort to assert themselves if those efforts aren’t taken seriously.

They need the chance, as all children do, to attempt things that are beyond them, to experience struggle and failure in order to build tenacity and self-confidence. They need to be respected by others in order to learn to respect themselves. They need to be treated as though others expect them to become responsible adults, or they will never push themselves towards that goal with the belief that they can achieve it. It’s a fine line for caregivers to walk. Inherently, children with disabilities have to work a lot harder than their peers, and they are all-too-often made to work hard at the wrong things (like trying to learn to “socialize normally”). So I’m generally not a fan of heaping even more work on them. But they do need, above all else, the kind of challenges that help us to grow as human beings– challenges to our judgment, our sense of morals, our courage, our level of independence. You can be equal to these challenges without being able to move a muscle, without being able to speak a word. But only if you are given the chance.

Children with disabilities deserve, as much as possible, a normal life. Most of the kids I work with will never look, sound, or act “normal.” But whether or not they get the opportunity to feel “normal” depends entirely on the actions of those around them.

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The Evolution of an Appropriate Response

Here’s a story from some time ago, when I had just begun working with 7-year-old Rhythm, a nonverbal autistic boy.

On one of my earliest visits with the family, Rhythm held his hands up in front of him and began slapping them loosely one over the other– a type of flapping I had never seen before?

“He wants you to tell him ‘quiet hands'” explained his mother. My brain winced. Being new to the family, I tried for a pleasantly neutral tone and said, “I’m not a fan of ‘quiet hands.'”

“No, neither are we,” said Mom, “But an ABA therapist he had for a short time gave him a lot of negative attention for flapping his hands, and now he thinks it’s a game.”

His 10-year-old sister demonstrates. She grabs at his hands with her own, covering them briefly. “Quiet hands, silly!” Both children giggle. It’s obviously a joke to them.

My brain grinds its gears trying to wrap around this concept. My introduction to the concept of “quiet hands” was Julia Bascom’s outstanding essay (http://juststimming.wordpress.com/2011/10/05/quiet-hands/), which pulls no punches in explaining why “quiet hands” is abuse, plain and simple.

I try it once. “Quiet hands, silly,” I say in as joking a tone I can manage, batting ineffectually at Rhythm’s hands. Even as a joke, it feels wrong.

His mother obviously has similar instincts. When Rhythm comes up to her for the ritual, she cups her hands around his momentarily and says “quiet hands”…. then mock-whispers to him, as if sharing a secret, “It’s ok! I know you’re excited. I’m excited too.” She smiles at him and hugs his shoulders. My heart melts a little.

The next time Rhythm slaps his hands, I skip the “quiet hands” line altogether and go straight to “it’s ok to be excited!” instead. It feels better.

(He has a similar ritual with shrieking in excitement, then holding his finger to his lips. He likes when his mother mirrors the shushing motion. There, too, though, I’ve noticed that she reminds him that it’s ok for him to show excitement. I vary my responses to him shrieking and then telling himself to be quiet. If we’re indoors, I’ll say, “I know you’re very excited, and that’s good. But you’re right– that was a little loud for indoors. Let’s try and save the screaming for outside.” If we’re outdoors, I actively encourage him to make as much noise as he wants.)

There was still something missing, though. I could feel it at the back of my mind. Reassuring and reaffirming Rhythm’s right to express himself however he wants wasn’t enough.

Finally, I realized what it was, and I felt foolish for not getting it before. The most useless phrase in the history of child-rearing is “Do as I say, not as I do.” Because for children– ALL children– ultimately, words come in as a second language. The primary language of human interaction is behavior. Children don’t care what you SAY, they care how you ACT. They believe what they observe and experience above all else. What good would it do for me to say “It’s ok,” and “I’m excited too,” if I didn’t prove to him that I was telling the truth?

So the next time Rhythm began to flap and slap his hands in excitement, I flapped with him. I needed to show him by example that flapping in excitement is OK, is accepted, is even done by someone in an authority position.

And that’s what I did from that day on. I shared my own flaps with him. And we’d sit on the porch swing together, happy and excited, rocking and flapping in silent communication.

Furthur nuances of ABA-based therapies

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.

Case 1:

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.

Case 2:

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.