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Behavior Modification: Use Sparingly and With Caution

November 5, 2017 Leave a comment

I don’t categorically object to behaviorist methods. They can be very useful in certain situations, and can be used on neurotypical people as well as (or more than!) with disabled people. But behaviorism can also be extremely harmful when used inappropriately. 

I want to compare two scenarios. In both cases, a preteen client was being physically violent. However, the two situations required very different responses. In one case, a behaviorist approach worked well for everyone involved, including the client. In the other, it would have been catastrophic, especially for the client.

***
First scenario
[edited 11/6/17]

Lisa has a moderate-to-severe developmental delay due to a genetic condition. She often used to kick people to get their attention. She wanted attention all the time, and a busy family, no matter how loving and patient, cannot provide nonstop interaction. 

Frequently, her mother and brother would be discussing something– schoolwork, sports schedules, chores, errands, weekend plans, whatever, and would ignore many of Lisa’s attempts to engage them. Lisa can’t jump in and join a typical conversation. She is moderately verbal and very social, but can only understand and say short statements or questions. A conversation with her consists of many, many repetitions of her few standard exchanges, such as her asking or answering:
“How woo day?” (How was your day?)
“Whuh day id?” (What day is it?)
“I wike yooce” (I like juice)
“What’s your favorite animal?” “Dawd” (dog)
“Where is your bedroom?” “Ubstays” (upstairs)

So obviously she couldn’t be part of most household conversations. Lisa would then get frustrated and kick, which usually got a response, even if it was just someone scolding her or sending her to time-out. She did a lot of kicking.

This was a job for behaviorism because:

1) Lisa is able to ask for attention in other ways. This is an important prerequisite for reducing an unwanted behavior. You must have a viable alternative that will meet the same need.

2) The family had already tried all the standard ways to get her to stop: asking politely, explaining that it isn’t nice and that being kicked hurts, telling her no, yelling at her, giving her time-outs.

3) This was a bad habit supported by the behavior of other people — the family was unwittingly encouraging Lisa’s kicking (“reinforcing it,” in behaviorist language) by not paying attention to her until she resorted to violence. The environment needed to change at least as much as Lisa did.

So the ABA staff trained the family (Lisa has two hour ABA sessions three times a week). The family were told that if Lisa kicked them, they should ignore her completely and walk away (unless she actually needed help, of course. Behavior modification should NEVER interfere with a child’s needs.) However, if she used any acceptable way to ask for attention (tapping someone’s shoulder, calling their name, waving in front of them, saying “excuse me” or “hello”), they should respond, even if they just said “hi Lisa!” or gave her a high-five. They should also regularly remind her of ways to request attention nicely.

This approach isn’t ABA-specific. Think of how often we tell typical kids “you need to ask politely,” or “What do you say when someone gives you something?” as prompts to say “Please,” and “Thank you.” If the child is over age 3, I often just ignore a rude request (“Gimme that!”) and they immediately understand and correct themselves (“Can I have that please?”).

The ABA techs also helped Lisa practice positive attention-getting methods. They would take turns pretending not to notice other people and then responding to their name or a tap on the shoulder. They also practiced waiting patiently for a response when someone says “just a minute” or “hold on” or “wait.” They practiced ending conversations calmly, so now her Mom can say things like, “Ok, five questions and then I have to get back to work.” Lisa seems calmed by these practice sessions; she enjoys repetition.

Practicing good habits reduced Lisa’s frustration, which made her less aggressive. She rarely kicks for attention anymore, just when she’s actually upset or in a bad mood. That’s still not ideal (it’s still a lot of kicking), but she no longer thinks of kicking as a good way to start conversations, and that’s a big improvement. Her family has developed better habits, too, so Lisa gets more regular responses.

One downside: Lisa also sometimes kicks people when she wants them to go away, and this behavior is reinforced by people leaving the room when she kicks them. She does know how to say “Leemee ‘lone” (leave me alone), and now we also need to encourage that more.

***
Second scenario:

Charles is profoundly autistic. He is completely nonverbal, with poor fine motor skills, and has only recently learned to use a small handful of photographs to request concrete things: Bathroom, Pretzels, Playground, Beach, Home, and a few others. This development has improved his mood greatly, but it’s obvious that he’s still got a lot on his mind that he can’t express.

When upset, Charles tends to scratch people and pull hair. He is never violent unless he is clearly distressed; often he starts crying when lashing out. Sometimes I can figure out what’s wrong, but not usually.

He recently went on a nature walk with his ABA tech (he has two hour ABA sessions five times a week). His mother was furious when she reported to me. Apparently, every time he scratched the tech, Charles was told to sit down. “Why should he have to sit?” she said. “He is not a dog! He isn’t being naughty! He isn’t hurting her for fun. He’s trying to tell her something.” I agreed.

Here’s why an ABA approach is NOT acceptable here:

1) Charles clearly understands that people don’t like being hurt, and uses violence as a last resort. This isn’t a bad habit or just mean or petty; it serves the very important purpose of indicating that something is seriously bothering him.

2) Charles currently has no other way to communicate his distress. If he feels sick, or frightened, or has nightmares, or if someone bullied him at school, he has absolutely no way to tell anyone. The closest he can get is to show us that something is wrong. Punishing him for scratching only teaches him one thing: that instead of trying communicate his unhappiness, he should suppress his feelings for the benefit of the adults around him. This is a horrible rule to teach a child. It’s like saying “stop crying or I’ll give you something to really cry about.” You may not be threatening physical abuse, but the message is the same: adults would rather see you suffer silently than share the burden of your pain.

Obviously, the only long-term solution is to build his communication skills so that eventually he can express his pain in words. I also know that Charles won’t tolerate ABA for language lessons either. He’s far too intelligent for the way they speak to him, and he quickly comes to hate anything he is forced to do over and over. So communication practice has to be slowly integrated into his life when he is calm and happy, in a good state of mind for learning. It will take time.

Even once he learns, he might not always be able to use words when he is too stressed or overstimulated. Haven’t you ever been so upset or angry or shocked or offended that you didn’t have the words to express it and all you could do was yell or curse or cry? I know I have. It might also be possible to show Charles some other ways to deal with anger– punching pillows, throwing water balloons, kicking tires. What do you do when you are unbearably frustrated?

Charles and I were walking along the beach recently. He kept scratching me and pulling my hair. Here is how I respond to this behavior:

1) I step back and ask him, gently, to please stop scratching me.
2) I tell him I understand he is unhappy but I don’t know why. I tell him I’m sorry that he’s unhappy and that I want to help if I can.
3) I offer him my hands, and ask (several times, with pauses between questions) “Can you show me what you need? Can you show me what’s wrong? Are you feeling pain somewhere? Show me where. Do you need the bathroom? Do you need to rest?”
4) I try to move us away from any stimuli that might be distressing him– crowds, loud noises, cold wind. I offer to sit quietly with him or to give him some space. Sometimes he takes me up on one of those offers and seems calmer after.

None of those options helped. So I did something that is not really allowed by my job, but is required by human decency, at least when you’ve known a kid as long as I have known Charles: I gave him a big hug. Opened up my arms and allowed him to choose if he wanted a hug. He did. He leaned his head against my shoulder and took big shaky breaths. I stroked his hair. I told him he was a great kid and that I was glad to be his friend. I told him that life can be really hard sometimes. I told him he is brave and strong, and not to give up, and that he’ll learn how to tell us more things someday.

I comforted him as I would comfort any other human being I cared about. I showed him that I wasn’t angry at him, that I wouldn’t stop liking him even if he hurts me. I reminded him that his family love him just the way he is. I reassured him as I would reassure any child who is suffering.

(If I didn’t know him well, I might have put a hand on his arm, or offered to hold his hand. Many autistic people can’t stand being touched, especially when upset, but touch is also one of the most profoundly soothing ways people can interact. Being touched without warning and initiating touch yourself are also very different experiences. I never insist on touch, but I offer it frequently, and most of my clients love it. I also pay close attention to learn what kind of touch they prefer– a firm hand-squeeze or a gentle rub on the back, a high five or a foot massage.)

Charles had been lashing out at me every few minutes.

After the hug, he scratched me only twice in the next half hour.

He needed comfort. He needed compassion. He needed care. He needed these things above all else. They are basic human needs and basic human rights.

Autistic people must have their feelings honored, their humanity respected. They have the same emotional needs as anyone else, and it is up to caregivers to discover those needs, understand them, and meet them. Any other approach is unforgivable.

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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 lenthgy 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 thimgs 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 disaproval. 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.”

Communication is a collaboration

August 8, 2017 1 comment

It takes (at least) two people to communicate. The transfer of information does not happen in a void. Lots of professional people have written professional things about this, everywhere from brain injury journals to Star Trek fan forums. Here’s what it looks like (sometimes) in real life:

My client takes his mother’s hand, tugs. She follows him into the kitchen. He pushes her hand in the direction of the cupboard that holds cups and glasses.

“You want water?” she asks him. She doesn’t expect a reply, at least not the normal kind– a word, a nod. His response will require a little more decoding.

She takes a glass out of the cupboard, puts some water in it, hands it to her son as she and I chat. He sets it on the counter beside the sink. Takes her hand, pushes it back toward the glasses. She offers him an empty glass– perhaps he wants to fill it himself? He waves it away.

“You want me to get you something different to drink?” She opens the fridge. “Juice? Milk? Show me.” He closes the fridge. Brings her back to the cupboard. She is baffled.

“Maybe he wants to play with the bubble cup?” I suggest. The cup appears to have bubbles suspended in the sides, and sometimes he enjoys looking at it. We were blowing bubbles earlier in the day. It could be a matter of association. She offers him the bubble cup. No. He pushes her hand back towards the shelf.

It’s easy for people to get frustrated at a time like this. It’s frustrating to her that she can’t understand, that her son seems to be requesting something and then rejecting it. It’s frustrating to him that he can’t make himself understood. But they don’t give up. She knows her son isn’t doing this to be annoying. He’s trying to tell her something. She begins taking the cups down from the shelf, one after the other, and each time he pushes her hand up again. She knows the message is here somewhere, if only she can be patient and find it… and she does.

She brings down a mug, and her son stops pushing her hand, rests his hand on her arm instead. Her confusion clears immediately.

“Oh! You want tea!” I am surprised. I would not have thought of this. I had no idea he liked tea. He wants tea, on a hot summer’s afternoon. His mother makes him tea.

These moments of working together towards a shared understanding are so simple and so complicated at the same time. They can be as trivial as a request for tea, and absolutely crucial to building a common world, a relationship, a mutual language. It is beautiful. Communication is a basic human need. Every time I see someone succeed at it, I smile.

People Are Complicated

October 22, 2016 Leave a comment

Human beings are capable of logical, rational thought. But we are not inherently logical rational beings. We are emotional. We are complicated. We are self-contradictory. We are inconsistent.

It’s easy to forget this. We expect other people to Make Sense, by which we mean that we want to be able to understand the reasons behind people’s feelings and actions. And to some extent, we often can. We have the ability to emphasize, to imagine how we would feel in a particular situation and hence understand how another person in that situation feels. But we can’t always know someone’s situation perfectly. We can’t always imagine that situation accurately. And, of course, we don’t all have identical responses to the same things. We don’t always make sense to each other. We don’t always make sense to ourselves.

So I am amazed at how often I fall into the mental trap of expecting children to make sense. Children are, in fact, less likely to make sense than adults. They are also less able to reflect on, understand, and express the reasons for their emotions and actions. But many adults get annoyed when children act in a way that the adult can’t understand. 

It always amazes me how many adults seem to have completely forgotten what it was like to be a child, to have irrational fears and inexpressible longings and heartbreak over ordinary occurrences. Even though, as adults, we still have these experiences, only perhaps less often and more privately. Why does it never occur to us that a child might be crying because of the song playing on the radio, laughing at something they just imagined or remembered, or angry just because it’s been a long day rather than because of any specific event?

As with so many things, this expectation of an immediate and obvious cause for someone’s feelings is magnified in dealing with disabled children. I was at the beach with a 9-year-old nonverbal client today. We were walking along at the water’s edge when he suddenly began to cry.

I asked him what was wrong, although I knew he had no way to tell me. I asked if he was injured, hungry, cold, if he needed to go back to his Dad, if I could do anything to help… (While he doesn’t indicate yes or no, he will stop crying if I manage to figure out what he needs, so I try to list a number of possible solutions for him.)

When he simply continued to sob, it suddenly occurred to me to wonder why I was assuming a concrete and proximate reason. Maybe he was thinking about something that saddened or scared or worried him. His grandmother has been ill. He has a new baby brother. And there are a million things I don’t know that could be wrong. Maybe his parents had a fight. Maybe he has a mean teacher. Maybe his best friend isn’t in his class this year. Anything could be upsetting him.

And maybe it was something more immediate, but abstract. He spent a long time tossing a ball to himself today, and then we walked past a group of kids playing a ball game. Maybe he felt left out and wished that the other kids would play with him. Maybe he felt sad about being so different from the other kids. About not even knowing how to ask to join them. Perhaps he was just disappointed that he was walking with me instead of swimming with his Dad (they did go swimming, but not for as long as he wanted).

We found a bench and sat. His Dad came over and started running through the same questions I had– did he need a snack, a sweater…? He waved Dad away, turned his back. He told him not to cry, and, at my urging, went back to his swimming. 

“Don’t cry.” I hear that a lot, from many sources. It’s usually said in a sympathetic way, not a mean way. “It’s ok, buddy, dry those tears.” “Don’t worry, there’s nothing to be scared of.” “Aw… Cheer up, honey.” It’s a natural response, I think. We hate seeing someone in pain (there’s that empathy again). We want to fix it. We want to make it all better. And sometimes, we can. Sometimes sympathy and reassurance is enough. Love alone has dried many a child’s tears. But it can also hurt to be told that everything is ok when that just isn’t the case. So I’ve removed the phrase “don’t cry” from my vocabulary.

I put my arm around my client’s shoulder and sat with him and his tears. I spoke softly. 

I reminded him that he was loved.

I told him that everyone feels sad and cries sometimes. And that he would feel better eventually.

I told him I understand that life can be really hard, and that it was ok to feel upset about that.

I told him that I wished I knew how to help him feel better, but that sometimes it just takes time.

He reached over and gripped my hand. After a few more minutes, he stopped crying. He stood up and tugged me in the direction of the parking lot.

“Ok,” I said, “Let’s go get your Dad and tell him you’re ready to go home.” And we did. And also, I told him that he was a great kid and I love hanging out with him. I probably should have said it sooner. I’ll try to remember to say it more often.

Language Stories

No lesson here, just reminiscing. I have a client, age 13, with moderate-to-severe developmental disabilities. Very social, loves music, loves simple word games such as being asked what sound various animals make, or asking me my favorite color, etc.. I generally see her for 3-5 hours a week, and have done so for the past two years. And just the other day, I had a very disquieting thought. It occurred to me, suddenly, that I probably understand more of what she says than anyone else in her life. Which is both unacceptable and understandable.

You see, in addition to assorted other disabilities and delays, she has a very profound speech impediment. She sometimes uses an iPad to communicate, but not often, and not with much fluency. She prefers speaking verbally. And, provided I pay very close attention and have had enough coffee, I can understand perhaps 75% of what she says. I don’t think anyone else in her life gets more than 50%. Teachers and therapists aren’t in her life long enough to learn. Her parents, in addition to being very busy people, are not native English speakers. They speak English quite fluently, but when you’re trying to decode speech based on minimal clues, there’s no substitute for having grown up with the language.

It’s not just the fact that her pronunciation is hard to understand. There’s also her unique patterns of speaking. She tends to drop consonant sounds, even the few she’s capable of making when she really tries. She drops words out of her phrases, syllables out of her words. And she speaks in the way people jot down notes to themselves, where a few key words stand for entire thoughts or requests. This is where it’s necessary to know her very well, because even if she pronounced those words perfectly, much of her speech would still be utterly mysterious to someone who doesn’t know what she’s referencing.  There’s often quite a lot of guesswork even for someone who does know her.

If she comes to me and says “bus” (a word she can produce reasonably intelligibly), she might mean “I want you to make the sound of a bus” or she might mean “I want you to sing Wheels on the Bus.” Even if she says “I want bus,” I know she isn’t asking to ride on a bus. Sometimes for the song, she’ll say “duh bus” (the bus) or add the “round and round” gesture used in the song. Her BIs are working fairly intensively on getting her to give more information in her speech, so now sometimes she’ll say “sound bus” when she wants the sound. And if we’re already playing “make sounds of things,” it’s a good bet she wants a bus noise. She’s also pretty good with simple yes/no questions, so I can just ask. This is pretty simple. And many of her other shortenings are relatively easy to pick up, too: “A B song” is the alphabet song, “Gaga face” is Lady Gaga’s “Poker Face,” and what sounds like “Fie uh wayn” is Adele’s “Set Fire to the Rain.” “Uh dime it?” means “What time is it?” Some of her abbreviations make a lot of sense, especially for someone who struggles with pronunciation– cutting out articles and other words that aren’t as important to the meaning of what she’s saying. Others are less sensible and actually interfere with the meaning of what she’s saying. I don’t know if those happen because she doesn’t want to try and say certain words, or if there’s an actual cognitive disability in terms of her ability to recognize or remember or think in full sentences. Probably some of both.

***

Sometimes figuring out the reference is pretty hard. I often run though handfuls of guesses before hitting on the right one, and then I have to remember what that particular phrase means again in the future. Not as easy as it sounds, especially when many of those phrases are very similar, or sound very different from their correct pronunciations. When she asks “How was your day?” it often comes out sounding like “Wuh woo they?” I never would have figured out what it meant on my own; the BI who taught her that question filled me in on what she was saying, and I had to hear it a couple of times before it stuck in my mind. It doesn’t help that she sometimes ask “What’s today?” (as in, what day of the week is it), and it sounds pretty much the same. The way she says “color” is identical to how she says “flavor” (and I have no idea how to write it!). “White” and “grey” can both come out sounding like “why.” Something that sounded like a cross between “hammock” and “omelet” turned out to be a request for “Old MacDonald Had a Farm.” So I have to guess at what sounds she is trying to produce, what word or phrase or part thereof those sounds are meant to represent, AND what she’s trying to convey by using those particular words.

Sometimes she finds a way to give me clues, sometimes not. Once, she asked over and over for “ghee ew up,” to my utter confusion. My brain started trying out possibilities: Giddy-up? Something about horses? Do I know a song about horses that I’ve sung to her before? (Many of her requests are for songs, which at least gives me some idea where to start). Or maybe it’s something about getting up. Is she asking me to help her get up? “Give it up,” perhaps. Is that a song? It might be a pop song I don’t know; she listens to a lot of pop music. Maybe I’m assuming word breaks in the wrong places. The last two syllables could be “Europe.” All along, of course, I’m saying things like “I’m sorry, I don’t understand, can you tell me another way? What is it?”

Finally she added a gesture– clasping her hands and swinging them back and forth. She had to do that a few times before I finally was able to make the mental leap to a song we’d sung together a few weeks prior. She was asking for “London Bridge is Falling Down.” Really. Here’s the logic: her favorite line in the song is “Take the key and lock her up, my fair lady.” (And sometimes, when I’m feeling energetic, I hold hands with her on that line and swing our hands back and forth.) So she was quoting her favorite line, but omitting most of the words, leaving her with the phrase “key her up,” which I was only able to figure out once I knew what she was asking in the first place. Sometimes at this job I feel a bit like a cryptographer. Or a linguistic anthropologist.

***

Another time, she said what sounded like “WUH wiggen.” No clue. She said it a few more times, but I was drawing a blank. Sadly, I can’t get her to add information by asking things like “What is it?” or “Can you tell me more about it?” or “Can you show me on your iPad?” but experience has taught me that sometimes she can answer certain yes/no questions that help me narrow it down.

(And rarely, wonderfully, if it’s a song, she’ll try and sing it for me. Her singing is beautiful, but not much more comprehensible than her speech. She only ever pronounces the final syllable of any line, the rest being filled in with moderately accurate vowel sounds with “w” substituted for the consonants. And while she can hold a note pretty well if she’s singing along to the radio or YouTube, when singing alone she’s very quiet, and the melody fades the same way the lyrics do, only bubbling to the surface briefly in places. Still, I love her singing, and there’s always a special thrill when she hits a line in the chorus and I finally recognize what she’s going for and start singing it with her and her face lights up with a smile about a mile wide.)

But this wasn’t one of those times.

“I don’t understand. Is that a person?” I ask. Could she have a friend at school named Mulligan or Brannigan or something like that?

“WUH wiggen,” she repeats.

“A food?”

She says it again, “WUH wiggen.” I admire her persistence. And sometimes, if she says something enough times, my brain will finally match her sounds up to actual words. The cadence helps a lot. But sometimes, we both just end up frustrated. Sometimes I work to get her attention onto something else instead, if I really don’t have a clue.

“I’m sorry, I don’t know it. Pick something else.”

“WUH wiggen.” She’s starting to look annoyed, and I can’t blame her. Could it be a game?… An animal?

“Is it a song?”

“Yeah.” Finally, a clue! But I can’t think of any song titles that match up. It could be anything from a nursery rhyme to a new release. The odds are against me, but serendipity is on my side. I somehow finally parse the words as “love again,” recognize them as belonging to the line “we can learn to love again,” and cross my fingers.

“Just Give Me a Reason? Is that what you want me to sing?” And finally, there’s the smile. Phew! I think she heaves a sigh of relief along with me. I laugh at the utter absurdity of the mental journey we’ve both just taken in order to reach common ground. And yeah, I’m feeling pretty good about myself for figuring that one out.

By the way, the song is completely out of my range and I only know about half the lyrics. Ordinarily, I wouldn’t even try to sing it in the shower, much less where anyone can hear me. But I know that exchange was hard work for her as well as for me. I know it’s stressful for her to try over and over to make someone understand, with no guarantee of success. In short, she’s earned it. So I give it my best shot. Top of my lungs. And she smiles and smiles.

***

I wish more people in her life could decipher her speech too, but how could I ever explain to someone how to decode her communication? How could I teach them to seek out those mental leaps? I don’t even know how I do it, or how to improve. There’s no secret formula for this, no easy answer. I can’t tell you the number of times I’ve failed at understanding her requests. Innumerable apologies for innumerable disappointments. Or the times I’ve figured something out, and then forgotten it on another day.

I’m proud of the times I’ve succeeded. I’m proud of her every time she figures out a way to give me more information. The leap from just saying “bus” to saying “sound bus” is huge. I still don’t know that she could go up to anyone and say “sound bus” and be understood, but it’s definitely progress. I’m sure that eventually she’ll be able to say “make sound of a bus,” and then she’ll be able to request it from anyone, not just the handful of people who know her best. I’m looking forward to that day on her behalf.

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.

Bee-bee-beeeee

He’s one of those kids that people (myself included, I’m embarrassed to say) inevitably describe as being “in their own world.”* But that’s not true at all. Better to say that he perceives and interacts with the same world we do… he just does so very differently than most of us. We don’t “speak” the same mental language, and many things that most people take for granted just aren’t on his radar. I suspect that plenty of things that are obvious to him pass us by completely, too. He doesn’t often make eye contact, rarely looks at something that someone is pointing at. He doesn’t do social smiles, or acknowledge when people arrive or leave, or have any verbal language. It’s hard to remember sometimes that he’s actually very observant and quite clever.

He’s a musical kid. Hums a lot, whistles better than I do, and does some reasonably good bird calls. He vocalizes a fair bit, especially when happy or excited. But he doesn’t use many speech sounds, and almost no consonants. With one exception. One of his happy verbal stims goes something like this: “bee-bee-bee bee-buh-bee…”

I wondered about this for a while. Why “bee?” Granted, “B” it is one of the early consonant sounds babies learn, but usually after “Mama,” at least, and it’s usually “Bah” rather than “Bee.” “Gah” and “Dah” are also learned early, but I’ve never heard him say either of those. When the most likely answer finally popped into my mind, I couldn’t believe it took so long for the idea to occur to me.

See, he’s from a multilingual household, and the most commonly spoken language at home is… Arabic. Where the standard term of endearment is “habibi” (ha-bee-bee), which means “beloved.” His parents and grandparents and so on use his name as well, of course, but very often he is addressed as “habibi,” especially when people are happy with him.

It’s wonderfully endearing to me that, out of all the things he hears on a daily basis, this is the one he has chosen (consciously or not) to mimic. Maybe it’s his way of saying “I love you” back to his mother, to his family, to the world. I don’t know. But it sounds even more joyful now that I know its origins.

Bee-bee-buh-bee indeed, dear child, bee-bee-beeee…

 

* Autism expert Judy Endow writes on why she dislikes that phrase: http://www.judyendow.com/autistic-behavior/we-are-not-in-our-own-world/ http://ollibean.com/autism-and-measuring-normal/