Things that need saying

November 21, 2011 Leave a comment

This blog is where I write primarily about disability rights from my own experiences as a person with disabilities and (more recently) disability rights activist. I also have a BS in psychology, with a concentration in cognitive and neuro psych.

Since graduation, I have worked as a psychology research assistant and as a caretaker for children with assorted disabilities.

For my own privacy and that of the people I discuss in this blog, identifying information will be limited. I ask people who know my identity not to mention it in connection with this blog.

A Letter to My Body

Restless Hands:

This is a really valuable reminder. It’s equally important to remember that 1) “behavior” isn’t always voluntary and 2) even involuntary actions have reasons and causes that need to be understood and respected.

Originally posted on growingkidstherapy:

IMG_1405

A few weeks ago, my client, Ethan, came in for his session very upset and agitated.  We began our lesson and tried working through his irritation to no avail. Ethan was becoming more and more distraught. So, we took a short detour from our lesson to discuss the issue. I am a big stickler for doing lessons in RPM sessions – it is part of how RPM works – engaging the brain and then body in cognitive lessons. However, sometimes the situation calls for a change in plan and this was one of those days!

Elizabeth:  Let’s break for a moment Ethan. I can see you are really upset. What’s going on?

Ethan:  I AM UPSET BECAUSE I AM NOT KIDDING AROUND AND I CAN NOT HELP IT WHEN MY BODY ACTS OUT.

Elizabeth: Let’s try writing a letter to your body.

DEAR BODY,

I DO NOT LIKE YOUR BEHAVIOR TODAY!…

View original 465 more words

Categories: Uncategorized

Normalization versus Normal Life

July 30, 2014 1 comment

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.

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. 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 tellin 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.

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. “No,” the child says quietly, sounding annoyed, not looking up, still intent on the activity.
“No, stop,” the tech prompts (I ask later and find out that she is trying to get the kid to distinguish between “no,” for not wanting to do something, and “stop,” for getting someone else to stop doing something. Seems pretty unreasonable for a kid who uses only a handful of spoken words!).
“Nuh, stah,” mimics the client (the pronunciation is poor but the cadence is imitated perfectly, which makes me grin). 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 camraderie, 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 despiccable at best and outright 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.

Coping with Awkwardness: Sexual Play in Children

Anyone who thinks that children have no sense of sexuality (of some sort) hasn’t spent much time around children. As any parent discovers pretty quickly, children are curious about their own bodies, other people’s bodies, and the peculiarly appealing secrecy and sensitivity of their genitals.

Typical children learn, at a fairly early age, to keep their private parts more or less private. Children with developmental disabilties often take much longer to learn this– for several reasons, and not just because they take longer to learn a lot of things.

One reason is that they don’t get the same social cues about embarrassment (from other children) that typically developing kids do. There’s an age-range at which typical children obssess intently about potty talk and related topics, learn the rules about keeping certain things private, and then make a very big deal when other children break those rules, thus enforcing a certain behavioral code among their peers.  Children with disabilities are often not exposed to this kind of peer group, and may not even get any verbal input from others their own age, and may observe less consistent behavior among the peer group they are in (such as a special education classroom). Lastly, children with disabilties often have a diminished sense of privacy because they need help with personal care (such as bathing and toileting or diaper changing) for much longer than other children, and have to accept this help from a wider variety of people– parents, teachers, therapists, babysitters, and so on.

As a result, one thing I deal with quite often is the issue of children touching their genitals while I am caring for them. Children “play with themselves” in the bath, stick their hands down their pants, and so on. Sometimes the actions are definitely voluntary, sometimes less so. Male children get erections regularly, especially in the bath.

The question for me is how to react in these situations. On the one hand, a certain amount of sexual play is normal and healthy. I don’t want to discourage it or shame children for it– especially, I don’t want to make children feel embarrassed about the fact that I have to see their private parts at times, since this isn’t optional.  And I don’t want to teach children that their genitals are dirty or naughty or wrong.

On the other hand, it would not be at all appropriate for me to actively encourage or condone sexual activity of any kind… That would be a form of sexual abuse, because in some way I feel I would be participating in the activity, if only by acknowledging it openly.  Some of my clients are at the age where I feel it’s important for them to get some level of sex education, but it’s not my place to give that education unless the parent requests it specifically (maybe not even then– and certainly not without another adult present).

The main thing is that I feel sexual exploration should occur in private… but when do these children have privacy? Most typical children experiment with their genitals in the bath and/or in bed. But the children I work with are bathed by adults. Even the most independent of them generally have me in the same room while they bathe and use the toilet. At night, not all of them sleep alone, and many wear diapers to bed, which I suspect limit self-exploration.

So, my approach is to generally pretend I don’t notice. If the child is in the bath, I will simply look away if they seem interested in exploring their body. I do not wash them or touch them any more than necessary for their safety while they are having an erection or touching their genitals.

If we are in public, I will generally try to intervene as subtly as possible.

(The issue of crotch-grabbing is further confused by the fact that it’s often a sign that a child needs to use the toilet. If I see a child put their hand between their legs, my first response is generally to suggest a potty break.)

For some children, I feel that it is appropriate to offer a quiet, verbal reminder in a neutral (nonjudgmental) tone of voice, such as “Remember, it’s not appropriate to put your hands into your pants in public.”  Some kids undress in public as well (or even have clothing fall off!) and then, too, I might say something about keeping private parts covered. A lot of the older kids, at least, know the rules of bodily propriety intellectually, and I don’t want to embarrass them by calling excess attention to what they are doing– which they may be doing absentmindedly, or having forgotten that other people are around, or simply through failure to control their own actions (autistic people, in particular, often express experiencing a wide disconnect between what they intend to do and the actions they find their bodies taking).

Mostly, though, the best trick is to notice when hands are headed in the wrong direction and gently brush them away from going further, or give them something else to do (ask the child to clap or hi-five, hand them something, etc.– without ever mentioning that there was something else you DIDN’T want them doing). Called “redirecting,” this last tactic is also very helpful for helping people break habits (semi-automated activities) like biting their nails or pulling out their hair– you catch them before they are even entirely aware of what they are doing, and get them to do something else instead, and eventually their motor pathways get rewritten. It’s far more effective than drawing someone’s attention to something and telling them NOT to do it– like pointing out that someone shouldn’t scratch an itch, focusing attention on a forbidden action can make someone feel more compelled to do it! (This is, by the way, why nagging is such a terribly ineffective technique).

I think the success of any of these techniques depends on my own ability not to be (or at least not to act) embarrassed. I’m by no means perfect at this, but I’ve made a lot of progress. I think that so many of the mixed feelings many children get about privacy, sexuality, and especially masturbation, stem from their own parents’ discomfort with having to address these topics. Fortunately, regular childcare tends to cure you of two things: the ability to be grossed out easily, and the ability to be easily embarrassed!

One thing I have not dealt with yet (to my knowledge!) is the issue of any of my clients developing a crush on me. I’m open to suggestions on what to do if that situation ever occurs!!

New Clients

As always, I am so very behind on stories of my kiddos. Sadly, Rhythm has been moved to another care program (I believe he now has a nurse attendant) due to increased seizures. I do miss him. In the meantime, I have two new autistic kids on my roster– a moderately verbal 11-year-old girl with a relatively uncommon genetic disorder, and a 7-year-old boy with a diagnosis of classic nonverbal autism.

I quickly became one of the 11-year-old’s favorite people. Among other reasons, I like one of her favorite singers and can sing her most famous song fairly well. I am going to call this girl Euterpe, after the Greek muse of song, because she is passionately obsessed with music, particularly pop songs with female vocalists. I spend most of my time with her singing, or else making other sound effects on request (animals, vehicles, you name it). She lives with a typically-developing sister, whom I’ll call Calliope (muse of epics– she does love to write!), and a mother who seems to be in a state of perpetual motion, effervescing with ideas, plans that change every few seconds, and a humming, cheerful energy. I find her overwhelming from a sheer sensory standpoint. It’s a good thing Euterpe is someone who primarily seeks rather than avoids sensation!

I’m just getting to know the 7-year-old boy, but I find him immensely charming already. He buzzes around the apartment– climbing, touching, observing everything, never still, flitting like a hummingbird from one entertainment to another, hands a-blur in the air. His high, clear voice echoes the words others use in perfect intonation but an octave higher. He seems to want to take in the world– touching everything, getting on top of or above everything, and always bouncing, bouncing, bouncing… then concentrating intently on a single activity that catches his attention– a table full of playdoh, shapes to cut out of paper (his fine motor skills are amazingly good), cogs that fit together, a youtube video of Thomas the Train. He has a slightly older brother and a mom and dad. His parents are very affectionate with him, and his mother seems to know him very well in the sense of being able to predict his actions and moods in that way mothers can, but I get the feeling no one quite understands him, which makes me sad. I’ve sat through one ABA session with him and wound up more or less hating the behavioral technician. Euterpe’s ABA tech is much better, and her supervisor is pretty excellent as people in these programs go.

I’m also working with a 10-year-old girl with Down syndrome, which is a very new experience for me and not at all what I’m familiar with. She’s a very determined and independent young lady, and fortunately, I mostly just have to keep her company, which involves letting her lecture me on every topic she can think of and drag me around by the arm like a favorite doll. She’s a bit on the bossy side, and I’m working on figuring out how to assert myself with her without being confrontational. I’ll admit– having kids who argue back when I ask them to do something (instead of giving me a simple yes or no of some kind) takes getting used to!

Interconnectedness, science, ABA, and autism

June 4, 2014 6 comments

[Quick amendment: the term "ABA therapy" actually refers to a fairly broad category of therapies based on the science of Applied Behavior Analysis, a branch of Behavioral Psychology. Because so many different approaches and programs are referred to as ABA, there is a good deal of confusion about the term within both the autistic community and the clinical practice. Generally, the ABA-based programs designed for use with autistic children seek to gradually alter specific behaviors (including actions that we ordinarily call other things, such as speech or eating), relying heavily on externally provided reinforcements, which are things that make a person more likely to repeat an action. A very simplified example: if you give a chocolate-loving child an M&M every time they say "hello," the action of saying "hello" is likely to become a lot more frequent!]

[Second edit: Unfortunately, programs listed as "ABA" consist of everything from abusively rigorous training that teaches autistic children to suppress being themselves (classic/Lovaas-style ABA)... to play-based activities (such as Floortime and PRT) that focus primarily on the child being able to communicate their needs to their caregivers. Most "ABA", even more unfortunately, falls somewhere between those two extremes, and it can be very difficult to untangle which methods are most problematic, and how, at first glance.]

***

I was talking with an ABA supervisor the other day, and she said something along the lines of “We know ABA works, and it works for just about everyone. We know because we’ve seen it.” And yes, ABA is a way to teach autistic children (or anyone else) certain skills. We’ve not only seen it, we’ve measured it and charted it and pinned it to the walls of innumerable institutions. But that doesn’t tell the whole story.

Because here’s the thing about science, and I say this as someone who loves science and has worked in research: In general, you’re only going to find what you’re looking for. And the ideas that are easily tested and easily measured, with results that can be easily quantified, are a lot easier to support than some broader, deeper, more complex ideas– the kind that are often critical to humanity. There’s a reason why most physics or biology books generally agree with one another, while most books on ethics or childrearing or religion do not.

Some things you can demonstrate fairly clearly with lab equipment and numbers. Others you can’t. This puts the quantifiable ones at a significant advantage in our culture. But does that mean they are better ideas?

***

ABA is the “standard” therapy for autistic children, because it provides results that are quick and quantifiable. Any observer, even an untrained one, can see the “progress.” The child learns to sit quietly for 3 minutes, learns to use a spoon, learns to ennunciate the word “cat” when presented with an image or the written word, learns to give a “high-5,” learns to request foods or other desired items by pointing to pictures, learns to say “I need a break” instead of tantruming, learns to say “nice to meet you” when introduced to strangers, learns to match a picture of a bed to a picture of a bedroom rather than a car.

Many of these are useful skills, yes. Many of them can be learned this way, yes. I do not object entirely to ABA as a concept (note that I am talking modern ABA– there are programs that use no aversives, include naturalistic settings, and do not rely entirely on DTT– not classic Lovaas-style ABA). ABA has its place. But that’s not the whole story.

[Another Edit: When I say that ABA "has its place," 1) I am not necessarily recommending it for all autistic children. If anything, I think it should be more often offered to non-autistic children... and adults. And anyone who is thinking about adding it to their autistic kid's schedule should speak to autistic adults who have had ABA therapy and learn what things absolutely need to be avoided in a therapist/program. 2) I'm talking about a few hours a week, maximum-- the same amount of time you'd put your kids through any other stressful learning program like music lessons, advanced subject tutoring, or a very competitve sports program.]

***

By contrast, I would like to offer here the bane of many hard scientists: the anecdotal, subjective story (if it makes you feel better, you can call it a case-study). The author writes:

I knew how to read long before I could speak. There were no responses I made that would have given anyone any indications that I was reading. I even tore the pages and ate them because I wanted to keep the words. There was no way that anyone could tell that I was reading or not. I did not react or respond appropriately because I could not…

…Once I suffered Guillain Barre syndrome after an allergic reaction to a flu shot, and was paralyzed for a time. I couldn’t bat a fly on my face. My mom insisted on a homebound teacher, although I couldn’t even breath on my own and was unresponsive. The teacher came by and gave me an education that would have been the same as any other student my age. I could not respond. Did not respond. He could have been instructing the wall paper for all the indicative responses I gave. I was given tests even. He read them out and read out the multiple choice answers as well, going on to the next question without ever receiving any sort of reply.

Eventually he was gone. Never knowing he ever made a difference, perhaps wondering if it was just two hours a day of talking to himself. Actually he did some of this. Talking absently as if to no one was listening. Going through history and science and literature. But my mind drew pictures taking me to places he described. Discovering sciences. Such subjects that were never before wasted on me.

It was the best education I received. Without the teacher ever knowing that it meant anything at all. Like giving an education to someone in a coma never knowing if the other person is receiving the intended message….

…It was years later when I could express the remembered lessons.

 

Please reread that final sentence. Read it several times. Because it’s really important. And it’s not an isolated case, either. Time and again, autistic people report that, as children, they absorbed vast quantities of information that they could not express until much later. This is an important story. For the more data-driven among you, I refer you to the following scholarly articles: http://www.traininautism.com/Mottron/2007%20Dawson%20psychological%20science.pdf and http://www.epubbud.com/read.php?g=ET5HW22S&p=1.

My point is: just because we can prove that ABA “works” does not mean that it is the optimal or ideal strategy. It is, however, much easier to test and demonstrate the effectiveness of than, for example, lecturing a child on subjects to which they show no response or give incorrect answers for years before they are finally able to demonstrate their mastery.

***

A more important question than “is ABA optimal?” may be “what do we risk losing by using it as the primary method of teaching autistic children?” One obvious failing is that it takes up a lot of time– time that autistic students could use studying material more appropriate to their actual intelligence. Another consequence we can reasonably postulate is that such students may come to dislike studying or school environments, or may stop believing in their own intelligence (see self-fullfilling prophecy/Expectancy Effect). It is also, I suspect, common for ABA therapists, who rely on the ABA methods to assess skills and learning, to underestimate the intelligence and competence of their clients. The resulting inappropriate evaluations of children’s potentials may then lead to these children not being given the opportunities, responsibilities, freedoms, and academic access they need and deserve to move forward in life towards independent adulthood.

Are you worried yet?

ABA also fails to take into account that autistic children often show intelligence in quirky ways, and find creative workarounds for areas where they struggle. An ABA evaluation of language competence would likely be unimpressed by the little boy who barely ever speaks, but uses the word “spoon” to ask to go to Wendy’s for his favorite treat– eating a chocolate “frosty” (example adapted from a true story). The language is functional in that his family understand it, but is ultimately considered incorrect and won’t do him much good with strangers.

Perhaps you agree that it’s better for him to use the proper word, and perhaps it is. It certainly will make his life easier in certain ways if his language usage is limited to what the majority of his listeners can understand easily. But if we focus narrowly on teaching him to say only what others understand, would we stifle the incredibly creative and poetic language usage so many nonspeaking autistics develop? Emma’s term “motorcycle bubbles” (meaning fireworks) comes to mind, as does Tito Mukhopadhyay’s breathtaking metaphoric explanation for some of his unruly actions– “Thinking of apples and doing bananas” (quoted in the problematic memoir “Strange Son” by Portia Iversen).  The step before that might have been answering “apples and bananas” to the question “why did you throw that?”… a response which any ABA therapist would correct to something like “I was upset,” which in no way supports and encourages the child who is trying to make an important point.

***

Human beings are complex, chaotic systems, with a lot of interconnected bits that we don’t understand very well. Sure, you can look at the short-term and most obvious effects of something like a specific teaching strategy, but the more global, wholistic impact is harder to assess. A certain method of teaching history might produce high SAT scores, but ultimately result in a student who hates studying history, or becomes worse at critical thinking, or becomes obsessed with politics, or becomes embittered about humanity.

Perhaps this sounds a little absurd, but I’m really not reaching here. You can teach a child to be very obedient, which looks like a good thing when they eat their vegetables and do their homework, but then perhaps they become a rebellious teen and engage in dangerous behaviors, or get into an abusive relationship because they have lost the ability to say No. Yes, I’ve seen these things happen many times. Can I prove a causal link? No. Have I seen enough cases to make me worry about the most well-behaved children, the ones who never protest? Yes. You pull one string and find it connected to an entire spiderweb, a constellation of thoughts and traits and feelings.

***

Let me leave you with one last attempt to change your mind. I’ve used this metaphor before, because I feel it is apt.

There was a time, not that terribly long ago, when Deaf children in the United States were taught lip-reading and speech, and the usage of any kind of sign language was discouraged at best and heavily punished at worst. The prevailing notion was that this was for the children’s own good: sign language would make them stand out, wouldn’t be comprehensible to most other people, and would therefore prevent them from ever being able to fit into society. I suspect a lot of earnest research went into the best ways to teach lip-reading and speech to the Deaf– and it was a laborious, difficult process for both student and teacher which rarely if ever produced perfect results. Some of the best students, of course, succeeded marvelously and went far in life, and most learned at least something, both of which must have seemed to justify the continued practice.

I’m sure it took a major shift in the thinking of authorities to finally realize that Deaf people who were permitted to use their own languages could do and think and express and learn so very much more. It would have been nice if they had started out by listening to Helen Keller (yes, amazingly, she did learn to speak, but only after she had learned tactile ASL), or an island community where almost everyone was bilingual in spoken and signed language. Maybe then they could have envisioned a future which included a Gallaudet University that graduates thousands of students, the beauty of Deaf-Jam poetry, and the realization that infants can sign long before they can talk.

I’m glad we got to that future. I hope the autism authorities will start listening more seriously to the autistic community, so that autistic children can look forward to a brighter future of their own.

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