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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.”

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Notes About Learning Language

May 14, 2016 2 comments

I just got finished reading this excellent article: http://www.assistiveware.com/are-our-assumptions-about-autism-and-aac-all-wrong

Fortunately, I’ve only once seen a case where an autistic client’s AAC was used in the horribly restrictive way that this article warns against. I have also been privileged to witness some wonderful AAC uses, and I’m in the process of learning how to encourage even more.

But let me back up a little here and tell a story.

….

The family cat enters the living room and my client perks up and points.

“At!” He says excitedly, “At!”

“Yes,” I say with an encouraging smile, “That’s a cat.”

“At,” he repeats.

“Cat,” I agree. A few minutes later, just in case I had forgotten, he points at the kitty again.

“At! AT! AT!” He looks extremely proud of himself, as though he has just discovered (or possibly invented) the entire idea of cats.

“You’re so smart. It IS a cat.”

“Yow,” he adds, grinning from ear to ear.

“Yes! Cats say meow!”

“Yow. Ow. At.”

“I see that.”

“At”

“Yes, cat.”

….

This client wasn’t one of my Respite kids. He was a typically developing toddler. And I suspect anyone who has ever had a toddler has had many conversations of this type. This is by way of reminding you what “normal” language development looks like. Lots of labeling. Lots of repetition. Lots of speech that, while not meaningless, seems rather purposeless.

So why on Earth, when an autistic child does this on their AAC, do people call it “stimming” and take the device away? Or worry that it is inappropriate, problematic,  or inhibiting learning? And even if they don’t object, they certainly don’t engage and respond, much less encourage. And I think they should.

….

A client with some fine motor difficulties forms odd sentences on a device, inserting the word “iPad” at intervals, so it might read something like “iPad I want iPad park iPad swings.” Watching this, I develop a theory. I think the “iPad” button is being used as a home base, a starting point, a reference. “I know how to get to the ‘park’ button from ‘iPad,’ so I’ll make sure I start at ‘iPad’ first.” This 7-year-old had invented a strategy to help overcome difficulties with motor planning… a strategy that could easily be overlooked or considered a “mistake.” Kids are often much smarter than we give them credit for.

….

A pre-teen client relaxes on the couch, casually exploring her AAC program. She has a lot of pre-programmed phrases. “Hi, how are you?” “I’m fine.” “My name is Suzanne.” “Call me Suze.”

“Hi Suze!” I say. I want to acknowledge her words, even though I don’t think they are actually directed at me.

“How are you?” The device asks, and she answers it herself, verbally. “I’m good!” It looks almost like she’s having a conversation with the device… Talking to herself, as it were. Maybe she’s got an imaginary friend. Or maybe she’s practicing. I used to practice saying things in the mirror all the time. This kind of “non-meaningful” device use has never interfered with her ability to also use the device “properly” for communication. And she’s enjoying it. People learn better when they’re having fun.

“My name is Suzanne.” says the device. “Call me Suze.”

“Ok, Suze.”

I’m making toast for an 8-year-old client while his family relaxes in the next room. This kid is very smart, but doesn’t use AAC as much as we’d like. I suspect it feels very limiting to him, as he’s a very precise person. But he finds ways to work around the problems. Sometimes they are downright ingenious.

“I want to eat toast toast toast.” says the device.

His Daddy smiles and sighs, “Don’t worry, buddy, you’ll get your toast. She’s making it for you.” Daddy thought he was just asking for toast. Again. Three minutes after the last time he asked. Daddy thought he was pestering.

“Yup! Toast coming right up!” I enthused. I thought he was just excited. I figured this was his way of saying “Yay! Toast!”

His 10-year-old brother, however, understood something that neither of us adults (both of whom are pretty close to him) even considered.

“He’s telling you he wants three pieces of toast.”

Oh. Toast toast toast. Three toasts. Of course. I’m so glad there wasn’t a therapist there to “correct” him. The repetition had a specific meaning. I wonder how often we miss the messages intended by the WAY in which our clients use AAC, messages we probably dismiss as quirks, oddities, or mistakes.

….

A year later. The same client has a newer AAC program, one with more flexible grammar and a much larger vocabulary. But he still doesn’t use it for much besides simple “I want” statements. And I don’t know how to encourage it, but here are a few things I’m trying:

  • Using the device myself, in his presence. It’s hard, and time consuming, trying to express thoughts this way. Several times I’ve told myself I’ll only use the device and not speak for a given length of time… and invariably, I’ve failed and resorted to speech. That tells me a lot about why exploring the device during downtime is so important. You need to learn your way around so that when you actually want to say something to someone, it doesn’t take you ten minutes to locate all the words you need. I’ve said serious things and silly things and simple things. “I like music.” “I know this is hard work.” “You rock!” I’ve used it to ask him questions. He doesn’t answer often.
  • Inputting the beginning of a sentence, such as “I like…” or “I feel…” and handing him the device so he can finish the statement. He’s done so once or twice. Not usually, though.
  • Carrying the device around, and handing it to him when he seems to be trying to express something. What active 10-year-old is going to walk around holding something that size? Or any size? Something that fits into a pocket might work. Or having the device always set up in a specific spot so he can run over to it whenever he needs to. That can work at home and school and maybe the playground, but I realize that it’s a serious logistical issue. If you had to put in the effort of finding something or going to another room every single time you wanted to say something, how often do you think you’d bother for minor things?

….

He and I relax at the laundromat while his Mom goes to pick up his brother from practice. We both enjoy watching the laundry go around, hearing the regular swooshing of the machines. I find “washing machine” on his device.

“Washing machine. Washing machine.” Verbally, I add “I like watching the–” and complete my sentence on the device. “Washing machine.”

He looks up from the machine he is currently watching. I hand him the device, show him how to navigate to the “washing machine” button, under Appliances.

“Washing machine.” He says, then puts the device down.

“Washing machiiiine” I repeat verbally, drawing the word out, exaggerating. I giggle and he smiles. I pick up the device and find “dryer” next to “washing machine,” with an identical picture.

“Dryer dryer dryer.” I write. He looks at me, smiles. My own voice echoes the device. “Dryer.” I point at the dryers in the laundromat, even though I’m quite certain he already knows which is which. I hand him the device. I point to the button that says “dryer” and repeat the word verbally again.

“Washing machine dryer washing machine dryer dryer dryer” he writes.

“Cool,” I say verbally, “I like watching the washing machine too. And the dryer. But especially the washing machine.”

Doesn’t this conversation sound… familiar?

Communication can look like this

This story happened as I was finishing up babysitting one day..

My client that day was an autistic boy in elementary school, minimally verbal, and very bright… but who struggles with making himself understood. Mostly over the past year, he has acquired a scant handful of verbal words and phrases that he can use independently, and slightly less fluency with an AAC program on a dedicated tablet.

It was evening, and his parents had just returned. Kiddo ran up to them excitedly.

“Go!” he exclaimed. (That’s a request — he says it when he wants to go somewhere.) Perhaps he was jealous that his parents got to go out and he didn’t!

“Where?” we asked.

“Go!” he insisted, and started trying to force Daddy’s shoes back onto Daddy’s feet.

We’re working on getting him to use the AAC more. Among other reasons, his fine motor skills are far ahead of his vocal abilities. I keep hoping he’ll learn to type soon.

I brought the device to the doorway, where Kiddo was trying (unsuccessfully) to hold Daddy’s leg in place as Daddy started down the hall away from the door, still asking “Where do you want to go?”

“Cah!” (Car). That’s an answer, and a good one, but not entirely sufficient for planning an excursion.

“Where do you want to go after that? Where do you want to go in the car?”

“Go!”

Back to square one. This conversation went on for a few more rounds, with minor variations.

Lately, I’ve been trying to model AAC use myself. I will type something, then hand the device over. Sometimes I get a response, which is wonderful.

So I entered “Where do you want to go?” and had the device read it aloud (I need to find out if there are proper terms for all these things one does on an AAC device!).

I handed the device to Kiddo.

“Wheh-du-oo-wahn-go?” he mimicked.

I hate when this happens. I know he understands a lot, if not all, of what we say around him. And he is making progress with speech. But, as part of that process, he’s also been turned into a bit of a parrot. He’s so used to being told “repeat after me” and so forth that some part of him assumes it’s a requirement to try and say anything that is said to him. And this can get in the way of actual communication. It’s very sad whenever that happens.

I changed the sentence to “I want to go to…” and I had the device read it out loud. I open the “places” page, and handed it over so he could fill in the blank.  He backed out of “places,” went to “vehicles,” and selected “car.”

“I want to go to the car,” said the device, and he half-echoed the sentence.

“Ok,” I said, “You want to go to the car.”

His response wasn’t what we expected, but it was clear enough. Daddy and I shrugged.

“Maybe he doesn’t have a particular destination in mind,” I said to Daddy.

“Maybe he plans to decide once we’re in the car,” Daddy said to me.

Maybe he wanted Daddy to choose an outing. Maybe he just wanted to go for a nice relaxing drive with his Dad. Maybe he hoped Daddy would take him somewhere fun, or stop along the way for fast-food, which happens on longer car trips. Maybe he wanted to go somewhere he doesn’t have the words for.

We didn’t need to know exactly what he was thinking, though of course that would be nice. He got his message across, and we acknowledged it and stopped trying to get him to respond a different way. You have to have this kind of mental flexibility when language is limited. Questions aren’t always answered in the way that you expect.

It’s a fine line to walk between extrapolating based on what you know about a person and “putting words in their mouth” — assuming you know what they intend to communicate. You help someone bridge the gaps, without taking over and steering the communication yourself. It’s a delicate collaboration… And when it works, it is absolutely beautiful.

(Coda: It was time for me to leave at that point, so I have no idea if there was an outing, or what it might have been, or whether it got put off until the next day because it was already too close to bedtime. But I do know that Kiddo told his Dad something, and Daddy understood, and so I went home with one less worry in my heart.)

Shifting Focus: Autism, Understanding, and Obedience

December 14, 2014 5 comments

The literal-mindedness of autistic people often requires that we show a certain extra care in the way we communicate with them. Particularly as children, they have not yet learned many of the social and behavioral rules that go unsaid, the ones most other people generally pick up through observation by about age five, the ones that become so obvious that before childhood ends, most folks have stopped even being aware of them as rules. Even among typically developing children, I often see parents get frustrated with their children for asking questions whose answers are assumed universal by adults. I am always sad when I see a parent snap something like “what do you think?!” or “you know better!” at a child who is asking an honest question. (True, sometimes children do ask questions who answers they know perfectly well, but that’s a different story. I hate, too, when a parent says “stop that!” to a young child without specifying what “that” is. So unfair! But I digress).

The other day, I was working with an autistic client, an elementary-school boy. We were at a fountain, and (not surprisingly) he showed every sign of wanting to play in it, which would have been a bad idea in such cold weather.

“Please don’t get your clothes wet,” I instructed as we approached.

As soon as he got close enough, he scooped up some water in his hands and poured it onto his own foot. Deliberate disobedience? Not having attended to my instructions? Lack of impulse control? Or…? A moment later, a thought occurred to me.

“Your shoes count as clothes,” I clarified. And then, because I remembered that many autistic children (as well as those with ADHD and other developmental disabilities) often do better with instructions that tell them what to do rather than what not to do, I rephrased my instructions altogether:

“You may get your hands wet, but only your hands, nothing else.” And he followed this instruction easily.

Now, this child is not perfectly obedient– no child is. He has a mischievous streak, a strong will, intense curiosity, and a frequent tendency to ignore the preferences of his caregivers. But at the same time, I suspect he sometimes gets labeled as disobedient unfairly.

When you give him a rule or instruction, it is common for him to do something that almost goes against the rule, but not quite. Children like this are often said to be attention-seekers, to “like getting a rise out of people,” or to always be “pushing  boundaries” and “seeing what they can get away with.” This puts a somewhat negative spin on the situation, making it sound as if the child prefers to cause a certain amount of trouble. And perhaps at times this is true.

But let me offer a possible alternative explanation.

Imagine a typically developing boy of the same age. His mother sends him out to play on a muddy day with the instruction “don’t get your clothes dirty!” The boy thinks about this for a moment and wonders if the rule applies to his shoes as well. So he asks. In words. Verbally. He says something like “Does that mean my shoes, too?” And he gets an answer.

Such a simple and obvious exchange, we hardly notice it.

But now think of a relatively nonverbal child in the exact same situation. He has the same question in mind, but he lacks the words and the ability to ask the question verbally. He still wants to know the answer. And the only possible way for him to get the answer is to perform an experiment, to try the action that he is not sure is allowed and see how people react. He’s not trying to test limits or get anyone upset or cause trouble– he’s just trying to ask a question (as all children do), using the only method he knows.

So please, think of this possibility the next time you work with a child who seems to be trying to get around the rules or give you a hard time. They may just want to understand better, and it would be unfair to punish them for that perfectly reasonable desire. Please assume, at least at first, that the child has the best of intentions. Be respectful of the fact that they may genuinely not understand, may not have the same basic knowledge about the situation that you take for granted. And please take responsibility for your part of helping the child behave well: be as clear and explicit as possible when setting rules. Choose your words with care, in order to make the situation easier for a child who might be struggling very hard to do the right thing.

Furthur nuances of ABA-based therapies

I’ve been seeing a lot of discussion online lately about ABA-based therapies.*

Can these therapies ever be done right? How can you tell when a therapy is damaging even though it is play-based, uses no aversives, and doesn’t seem unpleasant for the child undergoing it? Are stressful therapies ok in small doses?

Most people, including most of the ABA therapists I’ve met, agree that one of the most important things for any person to learn is how to say “No,” verbally or not. I’d like to describe two different ways I’ve seen an ABA technician work on this with an autistic client. On paper, the two ABA programs sound about the same (Note: (the people who perform the “therapy” sessions with the kids are trained by private companies and not licensed as healthcare providers or educators in any other way, to the best of my knowledge. Program supervisors generally require some form of degree in psychology). Similar stated goals and methods. But observing the techs in action reveals important differences.

Case 1:

The client is 11, minimally verbal (uses single words spontaneously and short sentences with prompting). Therapy consists of 2-hour sessions twice a week after school.

The tech treats the lesson plan casually. She and I and the client lounge on the floor of the living room, or go about the house working on various skills, most of them skills that are often taught by an OT or PT (dressing, using the toilet, preparing to go for a walk, eating a meal). At one point, the tech leans over and tickles the client lightly. The client pulls away a little, and the tech immediately prompts, in a friendly tone of voice as though giving advice to a friend, “You know, you can say ‘I don’t like that,” or ‘please stop,” or…”
“Stop, please,” says the client. The tech immediately stops, and smiles at the client,
“Thank you for telling me,” she answers.
This kind of exchange happens maybe once or twice a week.

Case 2:

The client is 7, mostly nonverbal, and has 2 hour sessions several times per week. The client is required to sit at a desk for most of the session, although some activities are done while sitting on the floor instead.

The client is engaging in a favorite activity at the table, mixing colors of play-doh together. The tech reaches over into the activity space, deliberately interrupting. The client pushes her hand away, and she ignores this, putting her hand back in the way so the client can’t continue playing. “nuh,” the child says quietly, sounding annoyed, not looking up, still intent on the activity.
“Stop,” the tech corrects, prompting him to use the specific word that has been pre-determined in his program as a “goal.”
“Stah,” mimics the client. The tech withdraws her hand, nods as if in satisfaction, and makes marks on her tally sheet, obviously grading the child’s performance. This process is repeated multiple times per session.

Case 1 isn’t perfect, but I think it’s a good shot at managing a necessary evil in a relatively decent way (the necessary evil being that, in order to make sure a kid knows how to object to things reliably, you pretty much have to provide or at least allow something they dislike for them to object to). The tech didn’t push, didn’t insist on a specific response, didn’t judge… just offered an alternative. The client was treated as a human being.

Case 2 makes me feel sick to my stomach. There’s no camaraderie, no politeness, no explanation, and not even a pretense of respect for the client’s wishes. Just training, and frustration. This is more “pure” ABA– no distractions, no additional variables, no unplanned interaction between client and therapist. But what upset me most was that the tech seemed to care only about reaching the objective, having the client perform to a pre-set standard, and not about whether or not the client was experiencing and understanding the power and value of being able to make a request and have it respected. There seemed to be no acknowledgement of the fact that the goal of the work (and the only possible acceptable reason or excuse for these therapies at all) is to provide the client with a skill that is, at least to some degree, useful to them. Communication that will be understood by others, no matter the format, is one such goal, and I think worth even some pain, though of course it should be the minimum of pain possible.

Missing from both is another crucial marker of respect: apologizing to the client for doing something they disliked. And, in a larger critique, it is very problematic that, in this world, someone saying “please stop” is more likely to have their needs respected than someone who simply pulls away, and someone who pushes someone else away is more likely to be labeled as “aggressive” than “self-advocating.” That needs to change. In the meantime, there are better and worse ways to teach someone how to lodge a verbal protest. I got to see both.

* Note: there’s a lot of confusion about terminology, especially in America, where anything that can plausibly, or even implausibly, be labeled “ABA” gets the title so as to be covered by insurance companies. The briefest overview I can provide is that Applied Behavior Analysis (ABA), a particular subdiscipline of behavioral psychology, has given rise to a wide range of “interventions” and “therapies.” The classic ABA therapy is an aggressive and rigorous program of DTT, based on the work of Lovaas, who wanted to make autistic people become, or at least appear, “normal”… and cure men who acted in any way effeminate or homosexual. Most autistic people consider this to be despicable at best and outright psychological torture at worst. More modern approaches such as PRT now apply behavioral principles in ways that are gentler, more flexible, more naturalistic, and more enjoyable for the client… but their goals are often (though not always) still based on the premise that becoming more “normal” in various ways is a reasonable goal for autistic children. Most autistic self-advocates and their supporters are deeply uncomfortable with this notion, too.

Autism and Communication

April 11, 2014 10 comments

I am increasingly convinced that we need to come up with a different set of milestones for how less verbally-inclined people learn language. Over and over, I see studies where researchers and educators work very hard (and not always successfully) to get autistic kids to meet the various stages of typical language development… contrasted with numerous stories in which autistic kids, teens, and even adults finally acquire language skills (verbal or written) in unexpected ways after years of ineffective therapy (well-known examples include Carly, Emma, Tito, Larry and Tracy, and more recently Drew, Mike, and Ethan).

Sometimes, the language acquisition is described as “sudden” or “unprompted.” Other times it is the definite result of deliberate struggle. But in either case, it seems clear to me that the professionals invariably mis-evaluate the person’s communication potential because they are looking for the “typical” developmental stages rather than acknowledging that communication and language skills may evolve along a different trajectory in non-neurotypicals.

My experience with nonverbal/preverbal kids also leads me to suspect that at other times, some of the “typical” steps are present, but in a form which often goes unrecognized. Attentiveness, for example, looks different in an autistic child (or adult!) than a neurotypical (NT) one. A NT child who is listening intently to an adult is generally seated, relatively immobile, and making eye contact, whereas an autistic child giving you their full and undivided attention may be pacing, rocking, or engaged in another physical activity… and almost certainly isn’t letting themself get distracted by trying to stare at the speaker’s face!

I recently got to spend a day with Tangles, after not seeing her in quite some time. Her mother says that she’s making a great deal of progress– trying to do more for herself, eating with utensils (albeit not very neatly), and verbalizing a lot more. I asked if there were any particular “homework” (therapies or programs) for me to practice with her, and she laughed and said “just do what you always do with her. It gets her to talk more.”

That surprised me a little bit, because I didn’t realize that what I was doing with her was anything particularly special. But I guess it is. Here’s the thing: I engage with her. I don’t just talk around her or at her or even to her (although I do all those things at times)… I converse with her. Even if her part of the conversation consists entirely of simple syllables like “ha” and “buh” and “foo.” I listen when she says them. I repeat them back to her, sometimes exactly as she said them and sometimes with variations. I get excited when she mimics my variations or comes up with ones of her own. I did this with Fishy too.

I also do the same pattern of interaction in nonverbal ways, especially with Rhythm. We hold conversations in patterns of clapping, stomping, face-making, or touching each other’s hands. We share attention and direct each other’s attention to things– feeling textures or watching patterns or listening to sounds together. These things are interactions, examples of joint attention, and without them, these children have no reason to even TRY communicating with me.

Think of what we do with babies. We crouch down at their level. We engage in things that interest them– playing peek-a-boo, shaking rattles, cooing in baby-talk, giving them the things they want like food, warmth, motion, smiles, bright colors. We connect with them, with what interests them. This is how they get the idea that they can connect with us in return.

Autistic children are all too used to having their interests (if not their needs) ignored by those around them. Parents often speak of their autistic children as being “in their own world”– but all children are. The difference is that there are standardized bridges between the worlds of NT children and adults– storybooks, games, and above all lots of verbal interactions. Many autistic kids, I suspect, would be just as happy as NT ones to share activities and special moments with their parents, but the parents are often oblivious to how to engage in the experiences that excite their kids, and instead resort to trying over and over again to drag autistic kids into activities that they do not enjoy.

Tangles did something special that day, and as usual, I came close to missing it. I had brought her a handful of brightly-colored drinking straws, because she enjoys chewing on plastic. She shook them out of their bag and started chewing one right away, babbling at me happily. I sat with her making sounds for a while. She played with the straws. Then she shoved one of the ones she was holding towards my face. At first I thought she was just playing with it. Then I suddenly realized: she was trying to put it in my mouth. I almost laughed, but then the implication hit me: she was sharing something she liked with me. It was as though I had brought her a box of chocolates and she had realized that the friendly or polite thing to do was to offer me one. So I took the straw in my mouth, said thank you, and chewed on it for a while. And I was incredibly touched, and proud of her.

Yes, the intent to communicate is there. We just have to be careful that we don’t miss it because it doesn’t look exactly the way we expected.

Communication, Attention, and Priority

November 24, 2013 1 comment

I need to remember how often, when a child doesn’t seem to understand what I am telling them, the real issue is that they are simply focused on something else, something they consider more important. This is true of all children– they focus on what matters to them, sometimes to the exclusion of everything else around.

How often have you heard a parent giving the same instruction time and again to a child who is playing — “don’t run!” or “use your indoor voice!” — only to see the child forget over and over as they get completely lost in their activity? Not to mention the things children ask over and over — “can I get one? Please? Pleeeeease?” or “are we there yet?” — to the frustration of parents who simply don’t understand that this question is ALL that is on their child’s mind at the time.

***

The other day when I arrived at Rhythm’s home to watch him after school, he dragged me down the street to a neighbor’s house. I already knew that he likes this house– they have a dog, and a rubber dinghy in the driveway that he loves to touch and rub and thump to hear the sounds it makes, and stairs up to the front stoop (he loves stairs, especially outdoor stairs). It appeared that no one was home at the time, so I was willing to let him romp around their front yard.

***

Usually, when he and I go walking, I struggle to find a balance between letting him enjoy exploring his own way and not letting him bother other people or do anything that would result in a confrontation with the neighbors. So, I’ll let him come up someone’s front walk and examine the architecture (he loves archways), but not knock on the door or walls. I let him press his face to the window of people’s cars but not their houses. I let him cross lawns but try to keep him out of flowerbeds.

He either doesn’t understand or doesn’t care about any of the boundaries and concepts of “private property.” Of course– I’m one to talk! As a child, I regularly snuck into other people’s yards to play. I didn’t have much experience with not being allowed into places, and I don’t think Rhythm has either. At home, he goes into all the rooms at will and has to be stopped from bursting into the bathroom to say hi to whoever is using it at the time. It isn’t surprising that he doesn’t understand privacy in that case– after all, he never goes to the bathroom alone, so why would anyone else?

***

At the neighbor’s house. We peered in the back gate by the boat. Rhythm tromped up the steps towards the front door with me in tow, hanging back a little reluctantly. They still had Halloween decorations and fake spiderwebs up in their front stoop, and he seemed to enjoy looking at those. Then he tugged my hand towards to door, meaning that he wanted me to open it or at least knock.

“No, we can’t,” I explained, “We haven’t been invited. Also, I don’t think they are home right now.” We repeated this process a few times– him wandering and looking around for a moment, then trying to get me to knock at that door. Me, telling him that we aren’t supposed to knock on people’s doors unless they have asked us to come over and visit, that it isn’t polite.

This kind of persistence is typical for Rhythm, and as I said before, for other children as well. The difference, when I work with nonverbal children, is that I don’t know how much of their persistence is due to various factors. In addition to the intensive focus that children give to their desires, it is entirely possible that:

1) They don’t understand that I am saying “no,”

2) They don’t understand WHY I am saying “no,”

3) They believe that I don’t understand their request,

4) They actually ARE asking for something different than I think, and/or

5) They have a counter-argument to the stated reason why I refused their request, but don’t know how to express it.

We tend to ignore those latter three possibilities with nonverbal children, and this is a problem. We easily assume that these children don’t understand us, when it is equally likely that we are failing to understand them instead. Verbal children can explain further if they perceive they are being misunderstood, and they also like to negotiate — “I promise if we get a puppy I’ll feed him every day!” or “Can I stay up for just ten more minutes? How about five?” or “I won’t be scared by that movie!” or “If you let me go to the party, I won’t ask for anything else ever again!”.

Nonverbal children, on the other hand, generally lack the ability to use that level of nuance, and are stuck simply making the request over and over in the hopes of getting their point across. And yes, it is possible that they are simply being stubborn– as all children are, at times– but we should not assume that this, or lack of intelligence, are the only explanations for their persistence.

***

I have a wonderful example of Rhythm using a counter-argument with me. I was getting him ready for his bath one night and he gestured, quite clearly, that he wanted me to get into the tub with him (presumably to make waves for him. He has me do this in the kiddie pool in his yard so that he can watch the water move, and I supposed he had no reason to assume that the bath is any different). Glibly, I answered “I can’t get in the bath with you, buddy! I still have my clothes on.” He very nearly rolled his eyes at me. Then he reached over and gave the hem of my shirt a quick tug, the way I do when I start undressing him. His meaning could not have been more obvious– “Ok, silly! Take your clothes off and THEN get in the tub.” He must think I’m not very bright sometimes!

I tried not to laugh– it was such a sensible response from his perspective. I wasn’t ready to try explaining propriety to an autistic 7-year-old, so I just told him, “Sorry, it’s against the rules for me to take a bath with you.” The experience definitely taught me a lesson about making flippant excuses! Now I always try to give him the most honest reasons that I can think of for why something has to be a certain way.

***

Rhythm had given up, for the time being, on trying to get into the house and was walking on the low stone walls around the flower beds. He adores balancing on any sort of ledge or narrow pathway, including ones quite high up in the air, and generally holds my arm or hand to brace himself. He usually has a pretty good sense of what’s within his abilities– although he also has a tendency to terrify his mother with his idea of “reasonable” risk! He was making a strange sort of throat-clearing/coughing noise and I asked if he was ok, thinking maybe he had gotten something scratchy in his throat. He ignored me, but seemed happy enough.

Eventually he led me around to the other side of their yard, where there was another gate in the fence. Again, he tried to convince me to open it — very persistent! I started the explanation again: We can’t just go in, it’s not polite, we haven’t been invited, etc., etc.. when my attention was caught by another odd noise. At first, I thought it was geese honking, perhaps migrating for the winter, and I looked up but couldn’t see any birds. Then I figured out that the sound was coming from somewhere beyond the fence, and wondered if Rhythm had noticed the sound before I did and was curious about it.

“Are there geese in that yard?” I wondered aloud, amused. I was mostly kidding, but Rhythm’s head shot up, and I realized I was on to something.

“Wait– do your neighbors keep geese??” I asked him. He looked at me intently, not confirming yet, but definitely wanting me to continue guessing.

“Not geese… ducks?” No response. He was still waiting for me to figure it out.

“Chickens?” He nodded excitedly. “Chickens!” I practically yelled, “Your neighbors keep chickens?!” He grinned.

Then something else suddenly made sense to me, too.

“Is that what you were doing before? I get it now! You were making chicken noises! Because you wanted to see the chickens!” His odd throat-clearing noises hadn’t been perfect chicken imitations, but they were pretty darn close, and far more realistic than the “cluck cluck cluck” noise that chickens make in all the kids’ songs he listens to.

***

And there you have it. I have no idea whether Rhythm listened to my explanations about why we couldn’t visit, or whether they made any sense to him. But I do know now that he was trying to tell me something, too, and I almost missed it because I was so focused on getting my message across. I assumed that I knew all the relevant information, and so I didn’t pay attention to the fact that he was trying to communicate with me. Or rather, I knew he was communicating, but assumed that his message was more simple than it actually was– just “I want to visit this house” in general, not specifically “There are chickens here and I want to see them.”

We didn’t get to see the chickens that day. I explained that we’d have to come back another time when the owners were home. With the promise that he would get to return and see the chickens at a later time, he let me lead him back to his house for a snack. I have no idea whether he would have been more reluctant to return home if I hadn’t ever figured out the purpose of the visit– but I certainly wouldn’t blame him if that were true! Disappointment is frustrating enough without the added misery of knowing that your request was never properly understood in the first place.

So I will try to remember to check my assumptions, and to put at least as much effort into focusing on what children are trying to tell me as I do into trying to get messages across to them. Mutual respect and mutual understanding– these are the bonds that humans build with each other. Empathy, compassion, collaboration, cooperation: all depend on taking the time and energy to discover what is important to someone else.