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Steps Towards Communication

January 6, 2018 1 comment

A while ago, I wrote about the collaborative nature of communication and the wonderful progress one of my clients has made over the last year. I didn’t talk about the incremental steps that got him to that point. Sometimes the signs of progress are so small that they’re easy to miss. But every one deserves celebration. Here are some memorable moments along the way.

***

We’re sitting at the table while he eats lunch. I’m singing softly,  because he likes music and because I often sing when I have nothing else to do. He stands, walks over to me, places two fingers under my chin, and pushes up lightly on my jaw. The meaning is unmistakable: he’s telling me to shut my mouth. I do. Half a dozen reactions pop into my head– surprise at this action I’ve never seen before, hurt feelings that he doesn’t want my singing, being impressed at how clearly and cleverly he got his message across, mild shock because it’s normally considered rude for a child to tell an adult to be quiet, and a quiet pride that he is comfortable enough with me to make that request.

Above all, I am excited, elated, overjoyed. Because HE MADE THE EFFORT TO COMMUNICATE WITH ME. He could easily have left the room. He could have pinched me or pushed me away. He could have covered his ears, or made loud noises. I’ve seen him do all those things, especially leaving the room. But instead, he decided it was worth trying to communicate. After the hundreds, thousands, maybe millions of times that he has tried and failed to get someone to understand something, he still cared enough, hoped enough, trusted enough to try to bridge that gap of understanding once more. So I sit in awe, and appreciate that magical moment. I am honored.

***

It was just a month or two since he started using photos of objects and places to show his mother what he wanted. I arrived at the house one day to find her incredibly excited. “We ran out of pretzels and chips,” she tells me, “and he brought me the picture of Costco! He knows we buy them there! So I took him to Costco, and he smiled the whole time.” She’s always known he’s more observant than most people give him credit for. I think about this level of abstraction for someone who is still very new at using pictures to communicate. He didn’t bring her pictures of what he wanted, he brought her the picture of where they had to go to get what he wanted. He was thinking a step ahead, thinking about a process rather than just a goal, and making elegant use of the very limited tools he has. This is what intelligence looks like. This is what communication looks like. And she had the perfect response– she acted to let him know she understood. Being understood must be such a relief for him, such a thrilling experience. I hope that his joy on their shopping trip was not just happiness that he got what he wanted but also pride for his own effort and success at communicating.

***

We’re sitting in the back of the car together on the way back from a fun outing. As usual, he is verbally stimming, making excited whooping noises and repeating his favorite syllables. And then, among the wordless cries of enthusiasm, I hear something that sounds very much like “Oh yeah!” So I echo it back to him, with feeling: “Oh, yeah!” He turns, looks me straight in the eye, and grins. A feeling of amazement sweeps through me, and for a moment I wonder why. Then I understand: this is the first time I’ve ever felt that he is SMILING AT ME. I’ve known him for close to three years. I’ve seen him smile around me. I’ve occasionally seen him smile in response to things I’ve done or said. I’ve seen him look at me while he is smiling. But I’ve never seen a smile aimed at me, a smile meant specifically for me to see. A moment of deliberate connection. A smile used to communicate. It’s breathtaking.

And suddenly I’m overwhelmed by how precious, how perfect this young man is, and how under-appreciated by so many people who aren’t lucky enough to know him as well as I do. I weep with joy at who he is, and with fear of all the people and situations in the world that will try to change him just because he is different, because they don’t understand him. I want to protect him from that world. I wish he would never feel lesser than anyone else, never feel unaccepted, left out, or looked down on… And I know it’s an impossible wish. His family (and I) adore him unconditionally, and I can only hope that will be enough to keep his sense of self intact. I wish everyone, including him, could see him as I do: a shining, caring, brilliant, gentle, sensitive, playful, joyful boy, capable of so much more than he knows. It is a privilege to be a part of his life.

***

Tiny, precious moments. Such little, quick, ephemeral things, so easy to miss or overlook. And each important beyond measure, each genuinely worthy of celebration. These brief connections are enormous milestones, heroic accomplishments for him. Each demonstrating, beyond the shadow of a doubt, his unique identity and his desire to share the person he is with the people he loves. To communicate.

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Just Amazing

Sometimes my job is difficult, frustrating, or annoying. Sometimes it makes me feel like the luckiest person in the world. This day was the second kind. And not just because I got to wear a bathing suit to work!

***

Less than a year ago, I would arrive at his house, pile into the car with him and his mother, and buckle his seatbelt for him. We would drive from place to place– park, playground, and so on– and try at each place to get him out of the car for some exercise and fresh air. Sometimes he would come out and play. Sometimes he would refuse to leave the car at all. Sometimes he would sob and claw at me or pull my hair. This never made me angry, but it did make me sad. Sad because I hated for him to be so unhappy.

Today I arrive at his house and he whoops with excitement. I lay out some laminated photos on the counter– beach, playground, pool, park– and call his name. He comes over, and without hesitation taps the picture of the pool.

“Ok!” I say, “We’ll go to the pool.” He grins. We get ready and head out to the car. By the time I get there, he’s already in his seat with his seat belt buckled, ready to go.

When we arrive, I ask him to carry his lunch box while I carry his backpack. He does.  We pick a bench and put down our belongings. He kicks off his sandals and runs into the pool. I don’t need to hold his hand. I join him in the water and watch him while his mom takes care of the toddler.

***

He’s in a great mood, and is eager to interact with me (sometimes he wants to enjoy himself all alone and that’s ok too). He tugs my hands and tucks them under his arms. I bounce him up and down in the water to the best of my ability (he’s grown so much in the past two years!). I spin him around, and we both laugh with delight. I push off the wall of the pool with my feet, and after a few minutes he imitates me– another thing I couldn’t imagine him doing last year. We work together to find different ways I can hold him and move him in the water. He’s so relaxed, so happy, so affectionate. He could easily swim by himself, but he wants me to hug him, put my hands under his back while he floats, roll him over and over.

***

I notice him watching a younger boy who is practicing swimming underwater, pinching his nose with his fingers. I suggest to my client that he try it too, and explain to him about the need for exhaling or holding his nose so he doesn’t get water in it. In response, he dives, blowing bubbles like a pro. Obviously, he’s known how all along. What’s cooler is that he was displaying that knowledge for my benefit– letting me know that he knew. When I first met him, he seemed uninterested in communicating with me except to make requests.

***

He watches a group of kids his age playing catch in the water. This is another recent development– he used to ignore other children completely. I encourage him to join in, but I can’t blame him for hanging back. Only once have I witnessed him really playing with another child, and it was an autistic boy a few years younger than him. Seeing him watching this game, my heart aches for him. I know what it’s like to be the kid who can’t figure out how to participate, or is too afraid of rejection to try.

I get him a ball from his backpack, and he plays with it by himself for a few minutes while I stand by the edge of the pool watching. Then he tosses it out of the pool. This usually means he’s tired of playing with a thing, but on a whim I pick up the ball, call his name, and throw the ball back at him, expecting him to ignore it. To my amazement, he turns to look, reaches up, and catches it.

“Wow! That was great! Throw it back!” I suggest enthusiastically, cupping my hands. He pauses a moment, not seeming to pay attention… then gives the ball another gentle toss out of the pool, but not really in my direction. I retrieve it and throw it, and again he catches.

“Throw it right at me this time,” I say, and again he seems to be ignoring me at first, but a few moments later the ball lands at my feet. The next time it almost makes it to my hands and I cheer as if he’s just hit a home run.

I’m grinning like crazy. He’s playing catch with me. It’s beautiful. I don’t care about him doing this to be more “normal” or because it’s what the other kids do. I care because he’s having fun and he’s sharing that fun with another person.

I’ve never before seen him choose to do any kind of structured activity with another person. Never seen him do something that involves taking turns, that involves this level of response to someone else’s actions. I want to grab the people next to me and tell them they are witnessing a miracle. I want to call the national news. I can’t imagine being any more excited if he were my own son.

***

It’s a day full of moments like this. He swings on the rope dividing the pool into sections.

“Off the rope, buddy,” calls the lifeguard. He doesn’t respond. I call his name, and he looks up.

“Leave the rope alone please” I call, and he lets go of it immediately. His mother and I have always suspected that he understands most if not all of what people say (in more than one language, too). But only in the past 6 months has he started regularly responding with actions that make it clear that he understands.

In response, I’ve completely stopped using the short, simplified sentences that I often used when I wasn’t sure of his comprehension level. Now I just talk to him like I’d talk to any other preteen, chatting about all kinds of random things.
Later, a few other kids are playing on the rope, and the lifeguard again instructs them to let go. To my surprise, my client also looks up at the sound of the lifeguard’s voice, seemingly alert to the possibility that he’s done something wrong. I reassure him that he’s ok where he is and he goes back to playing.

His awareness of everything around him seems to be growing by leaps and bounds. Or perhaps he’s always been paying attention but hasn’t been able or willing or interested in responding. Whatever the change, it means I no longer have to hover over him and, for example, physically drag him away from that rope. It allows him more independence.

***

By now, I’m sure any autism parent reading this is dying to know how these changes were accomplished. So first, let me point out that he is no less autistic. All these wonderful new things he’s doing, he does them while stimming and shrieking, flapping around, sniffing and tasting things that he probably shouldn’t, and having meltdowns over tags in his clothing. He is and always will be autistic. But he is becoming a more communicative, interactive, cooperative, friendly, self-confident, and independent autistic person, and to me, that’s the true measure of success. And the best kind of success.

Because there’s been no special diet or medication or new therapy. In fact, most of those things were discontinued completely over the past few years. He has made these changes himself, with the support of the adults around him.

Some of his independence came of necessity. There have been a lot of life changes for him that were totally unrelated to autism. One grandparent died and another moved away and his mother had a baby. As a result, there were a lot fewer adults tending to his every need or making demands on him, which gave him both more freedom and more responsibility. He’s matured a lot emotionally.

The other thing that happened is that he’s gotten some autistic adults in his life– first me, then a man who has a remarkable knack for visual communication. There wasn’t any lengthy teaching involved– they’ve worked together for no more than a dozen hours. But somewhere in those few hours, there was an “aha moment” for both my client and his mother as they finally zeroed in on a method of communication that both could understand. There’s still a long way to go before he’ll be able to tell us more than a handful of things, but the breakthrough has happened and now he knows that it’s possible for him to make himself understood in a way that he never could before. Since that realization, I feel he’s become much more interested in learning new things.

I think it was crucial for him to meet adults who were somewhat more like him, who intuitively understood things about him that his parents and teachers and therapists did not. It doesn’t take much. The vast majority of his time is still spent at home with his family, and his mother also provides the other crucial ingredients to his success: unconditional love and constant encouragement.

Accept. Love. Encourage.

Keep accepting. Keep loving. Keep encouraging.

Celebrate every new attempt, no matter how unsuccessful, every step forward no matter small. Not the fake programmed encouragement of tokens or rewards or empty praise, but genuine appreciation for the effort you see a child making. Acknowledge difficulty and setbacks. Children learn best when they feel safe and supported. When they are learning because it enriches their life, not out of desire for praise or fear of disapproval. Learning is its own best reward. Success builds confidence, and confidence leads to trying new things, and trying new things leads to more success.

***

Here are things I say to him often:

Try.

You can do it.

I believe in you.

Try again.

Thank you for trying.

I’m proud of you for trying.

I know it’s hard.

You’ll get there. I know you will.

You can do it.

That’s better.

You’re making progress.

Keep trying.

It’s ok to fail.

You can try again later.

You’re wonderful.

You’re the best.

You make me happy.

Keep trying. You can do it.

I love it when you _____.

***

Unconditional love. Unwavering acceptance. Unending encouragement. They are magic ingredients.

As I drive home from his house that afternoon, the radio plays a song that always makes me think of my clients. As Billy Joel sings “I love you just the way you are,” I find myself crying. I cry in happiness for the wonderful children in my life and the joy of seeing them grow and learn. I cry in sadness for every autistic child who doesn’t have unconditional love and acceptance. I cry because I am lucky to know that perfection, like beauty, is in the eye of the beholder, and I wish more people understood that. I wish every person in the world could hear those words when they matter most:

“Don’t go changing/ To try and please me…. I want you just the way you are.”

We Are Not Amused: Problems with the First Person Plural 

September 19, 2016 Leave a comment

Today I’m writing more about language. ​I’ve been thinking about adults who say “we” when talking to or about clients or children with disabilities, as well as children in general. 

I want to acknowledge that different people have very different levels of education, English language fluency, and ability to monitor their own speech. I sometimes get frustrated with activists who seem convinced that you can’t fight for social justice without using exactly the right language– language that is unfamiliar to most people.

I am a very language-oriented person, and it is difficult for me to write simply (for example, the first sentence of this post was originally “Continuing with my prior theme of dissecting language…”). I’m trying to become more accessible, since my natural writing style is hard for many people to read and understand.

Back to the topic.

There is a tendency for adults working with the disabled to use unnecessary plurals: that is, to say “we” when talking about something the other person is doing. I’ve seen some understandably hostile reactions to this in the advocacy community. But I also realized that I do it sometimes. So I started trying to figure out when and why. 

People usually say “we” to small children, disabled or not. Sometimes it really is a plural, and sometimes not. I think it’s hard to see the difference with babies, because the adults do almost everything for them or with them. “We’re going you upstairs to change your diaper” definitely involves both parties. And sometimes the adult is really just talking to themselves. “Are we having a cranky day?” isn’t a question most babies will answer.  

Other times, it’s like the parent is talking for the baby. “We need a nap” really means “The baby needs a nap” (although I bet Mom would like one, too!). I think this way of speaking makes people angry when a non-disabled person is speaking for a disabled person. Autistic rights activists get particularly upset about phrases like “We’re having a bad day,” when the speaker really means that a child (or even worse, a disabled adult) is having a bad day. Of course, it’s often true that if a person is having a rough day, their caregiver is struggling as well. 

I’ve used “We’re having a bad day” when talking about my disabled clients, especially if they are present, and I thought about why. One reason is because saying “He/She is having a bad day” sounds a little bit to me like I am blaming that person, when the truth is that I’ve probably made some mistakes that contributed to their bad day. It also sounds like I am totally uninvolved, and that feels impolite too. “We” feels more inclusive. Talking about someone in front of them is different than talking about you and that person. It’s usually rude to say “S/He’s going to the beach” in front of that person, but it’s perfectly fine to tell someone “We are going to the beach.” Really, though, it would be best to say something like “Today has been hard on everyone,” or “I think she’s had a lot of frustration today,” or “He seems upset.” I can’t know exactly what they are thinking or feeling; I can only guess.

Sometimes”we” really means “we.” “We are going to pick up your toys,” can mean “You and I will pick up the toys together,” and that’s just fine. 

What really bugs me is when someone, usually a professional, says “We’re going to pick up our toys now,” or “We need to put away our shoes,” or “We need to finish our lunch,” or “We need to earn three more tokens,” when they really mean “you” in all those cases.  We don’t talk that way with typically developing children, even when we are talking about doing something together. We say “I’ll help you pick up your toys,” or “You need to eat your lunch,” or maybe “Let’s put away your shoes.”

Using “we” and “our” when you mean “you” and “your” is infantilizing. I remember, as a fourth grader, our entire class being horribly offended when a substitute teacher (who usually taught kindergarten) said “Let’s all follow Mrs. Spitzer to the cafeteria now!” She was guilty of referring to herself in the third person (of course, I have changed the name) as well as addressing us in the first person plural. 

Now, sometimes people do use “we” in instructions. If you watch cooking shows, you’ll hear things like “Now we’re going to put our cake in the oven” or “We need to cut all these vegetables up really small, because we want them to cook quickly.” And usually the speaker is giving a demonstration at the same time. This can work in a classroom or therapy session, as in “We can use a graph to show this trend” or “We can mix red and blue paint to make purple.” At least, it works as long as the teacher isn’t using that awful sing-songy baby voice…

The other way that it’s sometimes OK to use “we” is to make a general statement. When adults tell children, “We cover our mouths when we sneeze” or, “We need to share with our friends,” they mean “I do this and so should you” or “This is what people are supposed to do.” Making a general statement can take the sting out of being corrected. I have a client with Down Syndrome who reacts badly when confronted directly but is happy to modify her behavior when I phrase it as a general rule, such as “Young ladies say excuse me when they burp” or “Remember, we always say thank you for gifts.” But this method, too, needs to be done respectfully. 

As usual, my underlying message is about the need for respect. A good general rule is: If you wouldn’t say it to a non-disabled person, don’t say it to a disabled person. But that’s easier said than done. It’s hard, too, to speak in an age-appropriate way with someone who doesn’t understand the things a typically developing person their age understands. Remember that what goes around comes around: you can’t teach someone to be respectful unless you are respectful to them.

Literal Language, Again 

September 16, 2016 Leave a comment

Anecdote from today. I was out walking with a teenage client and her BI. We’re working on teaching her to cross the street safely– stop, look, then walk. She’s not particularly interested in learning this. She’s used to having someone else take care of it for her, and she’s generally unenthusiastic about any task that requires her visual attention.

We reach an intersection, and stop. The BI prompts her to look to one side and then the other.

“Any cars?” She asks the client.

“Yes,” the client answers, although the street is completely devoid of traffic.

Now, this may well have been sheer laziness on our client’s part. “Yes” is often her default answer, and she tends to be a bit lax about yes/no questions. I have a hunch that the reason for this careless approach is that it only ever takes two tries to get a yes/no question correct, so why bother thinking about it too much? You say”yes” and then you get told “good job” or “try again.” Big deal. 

(I also suspect this client of deliberately answering wrong at times during easy tasks in order to spend more time on those tasks rather than harder ones– a metaphorical “dragging her feet” tactic. So far, I seem to be the only person who has noticed this. On the other hand, she’s tricked me a number of times into helping her with a task that I later find out she’s perfectly capable of doing on her own.)
Returning from my tangent here: there is another possible explanation for her wrong answer today, and it goes back to what I said last time about precise language. Language has a lot of subtext and context, and we process them so automatically that we don’t even consider the possibility that our assumptions may not be obvious to someone else. The BI asked the client if she saw any cars. And there were plenty of cars– parked alongside the road. Is it possible that our client simply didn’t think about the purpose of the question and so misinterpreted the connotation?

“Are there any cars coming towards us?” I clarified. The BI laughed as she realized the possible misunderstanding. Unfortunately, our client’s attention had already moved on to other things, so I didn’t get a chance to find out if my rephrasing of the question was useful. 

This is one of many reasons that I really wish ABA practitioners would give their clients brief explanations of tasks and their purposes before starting each task. It doesn’t do much good to teach someone to look both ways and report on the presence or absence of cars if they don’t understand that the purpose of this activity is to decide whether or not it’s safe to cross the street. 

I might as well take a moment to point out that there are valid arguments on both sides here. Reasons to explain a task briefly beforehand include: 

  • The client might be able to judge how important this particular activity is for them (eg., they might be more attentive if they understand that the purpose is to keep them safe); 
  • The client might be less frustrated with a seemingly meaningless task if they can see that it is a step towards a larger goal;
  • Offering an explanation is a form of courtesy and respect, of treating the client as an intelligent human being and presuming competence. If they can’t understand the explanation, there’s really no harm done, while if they can understand it, it seems rather rude not to offer one.

Reasons against include:

  • Letting the client decide how important they consider a task can backfire, as children’s priorities are not always the most sensible;
  • There is the possibility that the way the explanation is phrased will create misunderstandings that interfere with learning the task;
  • On a related note, having the end goal in mind from the beginning might lead to the client skipping important steps in their haste to reach the result;
  • Caregivers and therapists have to be more vigilant about laying blame on a client who fails at a task despite having had it explained. It’s very hard to remember that understanding the rules/steps and following them are separate skills. Also that being able to repeat the reason for something doesn’t necessarily mean understanding that reason. (I am reminded here of an anecdote in the memoir “Following Ezra” that goes something like this: the boy steals something from a classmate. To discourage this, his father tells him that when he steals, he disappoints both his father and God. The boy memorizes this lesson… and comes home the next day to cheerfully report, “Hey Dad, guess what? Today I disappointed you and God!” He had learned the words of the lesson but not the meaning, or at least not the implication, obvious to most people, that disappointing dad and God is not a good thing. He wasn’t a malicious kid, just an oblivious one. Fortunately, his father understood this and tried explaining it a different way.)

So, this post got a lot longer than I intended, and now I can’t think of a clever way to wrap it up. I hope I’ve given you something to laugh about and something to think about.

This is What “Pathologizing” Looks Like

June 21, 2016 8 comments

(The following essay is satire. It is intended to have a humorous effect. However, like other satire, it is also intended to make you think seriously about the issue at hand.)

(It is also not intended to shame anyone, neurotypical or neurodivergent, or mock their emotional needs and preferences. The topic was chosen because many people, particularly neurotypical people, engage in this behavior without needing to, and often without even being aware that they are doing so. There are also strong and largely unexamined cultural norms about these behavioral patterns, and I do wish to call those into question by describing this behavior as an outside observer might.)

*****

Paper proposed for inclusion in the Journal of Neurotypical Studies:

“Behavioral Manifestations of Perseveration on Appearance: Appearance Fixation Disorder in American Neurotypicals”

The majority of neurotypicals display obsessive behavior regarding personal appearance. This can range from moderately stubborn preferences for certain colors and hairstyles, which generally do not interfere with normal life activities, up through very expensive and time-consuming shopping, personal grooming, and other related behaviors.

Appearance fixation causes many neurotypicals to spend much of their lives wearing clothing that is at best impractical and often self-injurious or dangerous. Long-term use of cosmetics, hair dyes, and “fashionable” footwear (particularly for females on the neurotypical spectrum) can cause, respectively, skin breakouts, hair loss, and permanent injury to the feet, back, and knees, resulting in life-long pain. Underdressing in cold temperatures may lead to illness, while underdressing in summer with the goal of acquiring a “good tan” significantly increases the risk of skin cancer. Excessive time in hair and nail salons involves inhalation of potentially dangerous airborne chemicals. While no studies have as yet directly linked this exposure to any specific illness, it seems reasonable to have concerns given the dangers of inhaling many industrial chemicals. The author of this paper suggests that studies should be conducted in order to rule out the possibility that this behavior could contribute to neurological damage and autoimmune diseases.

Not all personal-appearance preferences are pathological, of course. Having “favorite colors,” and “wanting to look nice,” for example, are experienced regularly by most people. And while many neurotypicals choose to dress in uncomfortable fabrics, this may be  understandable, given their frequent undersensitivity to texture. The concern, however, occurs when the neurotypical child or teen persists in attempting to wear clothing that restricts movement or blood-flow, or presents health and safety concerns, as do “high-heeled” shoes and temperature-inappropriate outfits.

Antecedents to Appearance-Fixation Disorder:

Appearance fixation disorder is extremely common among neurotypicals, although it tends to have an earlier onset age and be more severe in girls than in boys. This disparity narrows during the teenage years, when social conformity behavior among both genders is generally at its peak. In adulthood, many men, particularly those in the “white collar” workforce (notice how even the terminology refers to appearance!), develop an increasing obsession with social status, which leads to more appearance-related behaviors. Adult women (again, particularly professionals) are often under extreme social pressure to conform to complex and incomprehensible appearance-related norms set by their peers of both sexes.

It can be difficult to predict the areas of appearance-fixation that any one neurotypical will develop: one may show a primary obsession with hairstyle, another with the newness of their attire, and another with achieving a certain “look” (such as “professional,” “hipster,” “preppy,” “goth,” or “laid-back”). However, exposure to mainstream media (television, magazines, and other advertisements) seems to contribute strongly to the fixation, and parents are recommended to limit their children’s viewing of these media as much as possible during formative years. Perhaps in part because of deficits in their ability to make logical decisions, neurotypical children are particularly vulnerable to harmful messages about the role of appearance in “social status” and “fitting in,” which fall under the category of another symptom set: the neurotypical tendency towards hyper-socialization.

Symptoms and Consequences of Appearance Fixation:

Neurotypicals, particularly from the “tween” years onwards, often display signs of extreme emotional distress when seen without their chosen apparel– shame, embarrassment, fear of rejection, and lowered self esteem have been observed in many cases. Female neurotypicals are even known to refer to their chosen pattern of cosmetics as “my face,” suggesting a worryingly deep emotional attachment, even to the extent of identifying oneself solely by physical appearance. Given these factors, we can perhaps begin to understand why neurotypicals will choose “fashion” over comfort, convenience, practicality, and even safety.

Not all neurotypicals display appearance fixations to the same extreme. The financial and time burden of strong appearance preferences is usually something that a family can accomodate with minimal difficulty, although many families seek care because appearance-related behaviors can be very time-consuming and make it difficult to get children and teens ready for school on time in the mornings. Very few neurotypicals are comfortable wearing identical or even similar outfits on a daily basis, unless the outfit is specifically dictated by a current “fashion trend.” In a related concern, children whose appearance fixation includes an obsession with the “social status” of clothing can end up costing parents exorbitant sums on “brand name” merchandise and frequent requests to replace clothes before they are outgrown or worn out, due to the child’s concern that the apparel is “outdated.” It is estimated that adult neurotypicals also spend shockingly large amounts of their income on appearance-related purchases, sometimes purchasing entire outfits solely for use on a single occasion, and frequently going into debt in order to “keep up” a certain appearance. Distressingly, many appearance fixations seem to involve both a desire to replicate as closely as possible the appearance of figures from popular culture and a phobia of wearing the exact same apparel as one of their peers. Imagine the amount of time and energy this must cost them!

Treatment and Recommendations:

Very little has been studied so far in the way of treating appearance fixation disorder. Many elementary and high schools have attempted to address this problem by instituting uniform dress codes, but this seems to serve only to increase the obsession with displaying visible signs of social status. Additionally, as these uniforms are almost always chosen by neurotypical school officials, they are invariably just as uncomfortable, impractical, and temperature-inappropriate as the attire that neurotypical children select on their own. Other places that require appearance-uniformity (the military, jobs that provide a uniform, or even office dress codes) are likewise problematic, often increasing the “social conformity” behaviors that most neurotypicals suffer from.

As noted before, parents may wish to keep their neurotypical children and teens away from mass media and other sources that encourage problematic behavior, such as shopping malls and the make-up aisles at grocery and convenience stores, as these can often trigger an outburst of appearance-obsessive behavior. Impractical clothing and footwear may be reserved as an occasional reward for good behavior, but should not be used on too much of a regular basis. Footwear, in particular, is an area where parents need to be firm, as inappropriate footwear can cause damage to the developing feet (and in the case of “heels,” to the knees and lower back as well, not to mention the increased risk of serious falls, twisted ankles, or other injuries). Neurotypical children may also benefit from regular exposure to social stories and other media that explicitly outline the importance of not judging others by appearance. We remain hopeful that further treatments will be developed that can reduce the heartbreaking impacts of appearance fixation disorder.

*****

If you are a neurotypical, or non-autistic adult, and you find yourself laughing at this piece, please take a moment to step back and imagine, with all seriousness, growing up (and living as an adult) in a world in which this paper was meant to be taken seriously. A world in which your preferences and choices (from those made casually and unconsciously to those made with serious deliberation) were subject to this kind of scrutiny. Where the majority of people discussed the “weirdness” of your tastes and moods, where articles trying to explain those things were published in serious medical journals, where your parents debated openly and publicly about whether or not to let you do many of the things you enjoy, and where entire professions (medical researchers, specialist therapists, and innumerable practitioners of alternative health care) were devoted to changing those aspects of your life and personality.

No, on second thoughts, maybe this essay isn’t so funny after all.

Fever Dreams and Philosophical Musings

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.

Breaking Down ABA, Again: Part 3; Some Advantages of ABA Methodology

December 13, 2014 2 comments

This post continues from part 2

***

Let me note, before I start, that the advantages I’m talking about here are a matter of applying scientific and behaviorist principles to a situation. This doesn’t necessarily require an ABA program– it’s just that, currently, ABA is the primary program in which these methods are used. ABA programs don’t always do these things perfectly, and they often add other problematic methods, but there are some very useful tools that are laid out in the science of behavior modification. In the next section, I will talk about when these tactics should NOT be used; they are by no means adequate for everything, and they can be all too easily abused, even without the intention of doing so. But they do have their uses.

1) Data Tracking

Numbers are important. They can give us information we don’t see otherwise. Our personal observations and the conclusions we draw from them are notoriously skewed. When you track something by the numbers, you take out a lot of the subjectivity involved. This can allow you to see patterns that weren’t previously apparent, and to become aware of progress that is happening very slowly. Charting patterns in a child’s behavior and the circumstances around that behavior can help parents discover their child’s needs, meltdown triggers, and so on.

  • Example: A mother reports that her child comes home from birthday parties agitated. After a party, he is prone to emotional outbursts, asthma attacks, and toilet accidents. The mother speculates that the child has a sugar sensitivity, because he gets a lot of sugar at parties. She puts her son on a restrictive diet. An ABA therapist would first use numerical data to confirm that these changes really do occur after parties, then look at individual aspects of the situation. They might find, for example, that the child doesn’t have these same problems after eating dessert at home, but does experience them after days with a lot of unexpected activities. Rather than changing the child’s diet, there is a need to limit his exposure to situations with a lot of excitement and a schedule that is different from normal. His mother (and eventually the child himself) can also start to look for earlier signs that he is getting overwhelmed and intervene at that time.

2) Focus on Facts

We do a lot of speculation about people’s behavior. When behavioral markers aren’t what we expect (for instance, when a child laughs rather than cries in times of distress), it’s easy to come to the wrong conclusions (eg– he hit his brother and then laughed– he must be a cruel and unempathetic person!). Behavior is a form of communication, but not all behavior is intended to communicate a message. Whether or not a message is intentional, we can always learn something from a person’s behavior. We often wrongly assume, however, that their behavior tells us what that person is thinking or feeling. This is not always true. Sometimes, behavior is a matter of habit, which says more about the person’s past experiences than their current state of mind. Sometimes a behavior that is problematic (even for the person doing the action) has been unintentionally reinforced, and the person needs help to learn a new and better way of accomplishing the same effect.

  • Example: A child often bites others. Let’s say any child who bites someone gets removed from the play room, which is something this kid actually prefers over being in a room full of other children (although a behaviorist would leave out the concept of “preference”). Recognizing that what was intended as a punishment is actually a reward for this child allows you to 1) learn that he doesn’t like being in the play room, 2) teach him a different way of asking to leave the play room, and 3) come up with a different consequence for biting that doesn’t encourage him to use biting as a means of getting what she wants in the future.

3) Providing Consistency

Numerous studies have documented that all children, not just autistic ones, require a certain amount of consistency in their life. When the rules are always changing, children become very distressed, and that distress often manifests itself behaviorally. Children who are abused, but also those who lives are disrupted in other ways (say, by a divorce or sudden change in socioeconomic status), often show increased aggression, disrupted sleep schedules, regression of formerly acquired skills like speech and toilet use, self-injury…. is this list sounding familiar? Autistic children, already overwhelmed by sensory overload and a world full of confusing neurotypical demands, need to be able to establish patterns, schedules, routines, and habits. They need those around them to give consistent and clear feedback. The repetitive drills of ABA, while infuriating in some contexts, can be very calming in others. Having a child do something like getting dressed the same way each time, in a series of definitive steps that are shown ahead of time, can take a lot of the stress and uncertainty out of daily activities. Parents and teachers are often completely unaware that they are sending conflicting messages or interfering with what the child viewed as a set routine.

  • Example: At home, a child smears food on the table and draws patterns in it. This makes her sister laugh. Dad is used to messy mealtimes and doesn’t mind. At school, the child gets in trouble for the same activity. And when grandma comes to visit at home, the child again gets scolded. Major meltdowns result, and Dad is worried that this means his daughter can’t handle criticism or correction. A therapist may instead identify the inconsistency as problematic, and ask Dad to set the same mealtime rules at home as there are at school. If Dad insists that playing with food is important (what an awesome dad!), the situation can be altered to make the distinction clearer– maybe the kids get to sit at a specially designated “messy table” at home where they are allowed to smear mashed potatoes colored brightly with food coloring, while sitting at the “grown-up table” always means that formal rules are in place.

****

I’d like to offer three further examples of situations where ABA would be useful.

1) Fictional Scenario: Self-Feeding

Maria prefers to feed herself, from a plate or bowl. She can use a spoon but is fairly messy with it, and a lot of her meal ends up on the floor and her clothes, etc. Her parents don’t really mind the mess (at least at home), but they worry that Maria may not be getting enough food this way, especially at school where meals are timed and only a certain amount of food is made available. Maria’s pediatrician agrees that she’s a bit underweight, but there don’t seem to be any digestive problems involved.

Data tracking is the first step here. Someone sits with Maria and counts her bites. Does she eat more at home than at school, given the same bowl of food? How many bites go into her mouth versus spilling down her shirt? Is she doing other things with her food like throwing it? Does she eat some foods more effectively than others? With this data in hand, the therapist moves on to analysis.

If Maria’s primary problem is spilling food, a different type of spoon may help, or stickier food. If she’s throwing food, there may be environmental factors– perhaps she can’t eat in a loud room without getting upset and flinging food around, or she starts throwing food at home when she wants attention from Mom. In either case, the situation in which she eats needs to be changed somehow. Maybe Mom comes over and gives her a hug every time she eats five bites without throwing the food, or she gets to eat in a separate room at school. If she only throws certain foods, those foods could be switched out for something different. If she is still unable physically to get enough food into her mouth, maybe something can be done so that she’s more willing to let someone else feed her.

Here we’re looking to identify and meet Maria’s needs. It’s pointless to classify her as a troublemaker, say that she’s “doing it for attention,” that she “doesn’t care,” that she’s “stubborn,” or even that she likes or dislikes certain things. Depending on her age, there may or may not be emotional issues involved. It’s possible that Maria is anorexic and needs counseling, but it’s a lot more likely that this issue can be addressed without that (for that matter, some aspects of anorexia can be addressed this way. Even alcoholism recovery classes teach members to identify and avoid “triggers”– things that make drinking behavior more likely to occur). Yes, a certain amount of caution is needed. Rewarding children for eating can lead to disordered eating, but it can also be supportive for a child who simply finds eating to be physically difficult or tiring and so tends to not eat quite enough. Similar tactics are applied by programs that help non-autistic people exercise more regularly or cut back on smoking.

 

2) True Story: Stuck on “No”

A preteen client of mine (let’s call her “E”) with various developmental delays often balks at transitions. In particular, when asked to get out of the car, she often begins yelling “no!” over and over, and will lash out physically at anyone who approaches her. This occurs even when we have arrived somewhere that she very much wants to be. Sometimes, given time, she will leave the car on her own. Sometimes her mother pulls her out by force. The situation has become a habitual struggle for everyone involved.

I can come up with innumerable ideas about why this happens. It might be a somewhat symbolic power struggle. It may be one of the few situations where E can exert some power over her family, as it takes effort to forcefully remove her from the car. She may enjoy getting her mother upset. She may want to have a bit of time alone to herself, which she doesn’t get often. She may really enjoy sitting in a non-moving car. Maybe her mother used to tempt her out of the car with treats and she’s tantrumming in hopes of getting those treats again. And so on. But whatever the reason, it’s not really a behavior that has positive results for her. It significantly cuts into her time at activities she enjoys, and often results in both her and her mother being unhappy and/or getting physically hurt.

This is also an issue without a simple solution. When I first started working with E, her sister told me “take away anything she’s playing with and just ignore her until she gets bored and comes out of the car.” I objected to this at first, feeling that it was rude, especially since E kept trying to talk to me from inside the car. So, trying to be respectful, I’d keep up conversation, but I soon realized that this actually was prolonging the time E spent in the car. If I didn’t eventually stopped responding, she’d go into what I soon realized was a litany of unreasonable requests that weren’t really anything she wanted (“I want my mom! I want ice cream! I want to go to bed! I want (some nonsense word)”). Even if offered one of the things she requested, she’d ignore it. I realized that this list of requests was simply something she does when she’s not happy with a situation. She’d yell demands for a few minutes, then calm down and come out of the car. So at that point, I assumed that she might just need a few minutes of quiet time to wind herself down and be ok with getting out of the car– which is fine, as far as I’m concerned, though frustrating if we’re in a time-crunch situation. Her mother was less satisfied.

But that method stopped working at some point. And yes, things change for people sometimes– needs, preferences, habits, and so on. For a while, E was into telling us when she was “ready” for something. So I’d tell her “I’m waiting until you’re ready to get out of the car.” If she tried to engage me in conversation, I’d just repeat that. (I did learn quickly, though, that pressing her to do something once she said “I’m ready” often sent us back to square one. I had to wait until she actually started taking an action to know that she was really ready). Being the one to say “I’m ready” handed the power to her in a lot of situations where she previously hadn’t had any control, and for a while, getting her to do anything was simply a matter of asking her to tell me when she was ready to do it. But perhaps after a while she realized we were using that to manipulate her into doing things, or the novelty and enjoyment wore off, or something. The fact of the matter was, she’d gotten back into her “no!” routine in regards to getting out of the car.

I don’t think the “no!” routine is deliberate. It may even be something E would rather not do but feels unable to control. But this line of thinking isn’t really helpful here. ABA sidesteps the speculation and interpretation and goes for the only relevant question in this case: what changes can we make in this situation in order to change what happens? Some possible answers are obviously worse than others. You could try to drive her out of the car with an airhorn, offer her candy if she leaves the car quickly, take away privileges for every 5 minutes in the car (not a very effective tactic, as most parents should know).

Here’s the most recent method that her ABA team have found effective: upon arrival, swing her leg over so that she’s facing out the doorway of the car rather than still facing forward. That simple. No idea why, but somehow, this serves to break the pattern of E fighting to stay in the car. It’s simple, it’s not harmful to her or anyone else, and it doesn’t require an explanation. This is ABA at its (rare) very best.

 

3) True Story: All Done and Then Some

The boy I’ll call “BB” is 7 years old with a diagnosis of classic nonverbal autism. He enjoys sensory activities, especially ones that involve mixing things like liquids, paint, glue, shaving cream, and so on. When he is done with an activity, his usual behavior is to fling the components wildly about. This behavior is extremely effective for him. It guarantees the end of the activity, and usually gives him the opportunity to scamper off and get into something new (often something he knows is forbidden) while his caregiver scrambles madly to clean up behind him. In addition to making a mess, he will also throw toys out of the window or smash things when done with them. People use terms like “willfully destructive,” and “troublemaker,” and “likes to get a reaction from people” for kids like this. I don’t like these terms, and ABA (to its credit for once) doesn’t use them.

Granted, the primary problem with this behavior is for BB’s caregivers, in terms of messes created, things broken or lost, the risk of injury from flung objects or shattered glass, etc. Since his family lives in a rental, things like paint in the carpet are a financial problem. Because of this, though, BB’s behavior leads to limits on the things he is allowed to play with, as well as the time and place of playing, which isn’t ideal for him. And stressed-out caregivers aren’t exactly good for him either. No amount of explaining, scolding, reminding, punishing after the fact, or offering bribes for not making a mess has really been effective in changing this behavior… and those things are usually all most caregivers know how to do (most don’t even try all of those methods!).

So the ABA goal here is to replace the behavior of flinging things with another method of indicating that the activity is finished, such as saying or signing “all done,” moving to put things away or clean up, etc.. This is currently being accomplished by having the ABA tech watch him closely during play, and as soon as he starts showing any sign of decreased attention to the activity, they prompt him to indicate that he is done, at which point the activity ends and they walk him through cleaning up. I think they could make this switch even more effectively if they also gave BB several minutes of unstructured play time afterwards as well, since that is one of the benefits he gets when he makes a mess or breaks something.

It is also possible, though doubtful, that he does in fact enjoy the emotional reactions that people around him have when he takes more destructive actions. If this were the case, it would be easy enough to provide this, too– perhaps by having people yell “all done” loudly and run around acting excited or upset after an activity. The idea here is that, basically, any advantage he gets by destructive actions can instead be offered to him without the destruction needing to take place, which will make it as easy as possible for him to substitute new behavior for old habits. There is no placing of blame, no claims made about BB’s intentions or personality, no arguing or explaining or debating involved. And in a case like this, I think that’s exactly what is needed.

***

In the future, I’ll talk more about when these methods should not be used and why not, but I feel that a lot of self-advocates who have been through ABA programs have already effectively explained many of the downsides (see reading lists from the previous two parts). I’ve mentioned this before, but I also want to add that I really wish ABA programs weren’t restricted to autistic children. Most neurotypical families and classrooms would benefit immensely from ABA interventions. In fact, anywhere that people have fallen into habits can cause problems for themselves or others, ABA can help. ABA should not be used without also talking to the client about what is being done and why, even if the client is not able to respond to those explanations.