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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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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.

Learn To Be Autistic

Fortunately, increasingly many schools of thought and “therapy” are beginning to understand that in order to teach an autistic child effectively, an adult has to learn, at least a little bit, to communicate in that child’s native language. That “language” (or culture, perhaps?) is the neurology called Autism. An autistic child has automatically been thrown into a full-immersion Neurotypical classroom that we call the “normal” world. They didn’t have a choice about this. But we can choose to learn a bit more about how to make them comfortable in that unfamiliar space. We spend so much time and energy and money and research on bringing them closer to being like us. But really, in order to have a good relationship with anyone autistic, we have to meet them halfway.

NOTE: You may notice that I alternately include myself in the “us” of autistic people and the “us” of the typical world. This is because, as one of the many who grew up “passing” without a diagnosis, I have something of a dual citizenship. Depending on the context, my knowledge and experience may align more or less with one side or the other. I often find myself explaining neurotypical things that I mostly understand to autistic people. I also often find myself explaining autistic things that make perfect sense to me to neurotypical people who are utterly baffled by them. In both cases, I feel a bit like a cultural anthropologists: knowledgeable about a culture without exactly belonging to it.

***

For example, neurotypical people tend to require a lot of feedback when they communicate. If you say something to me, especially if I am a child, you expect me to acknowledge your speech verbally or by looking at you, or oftentimes both. Autistic people aren’t always capable of this kind of response, nor should they have to be. It’s a waste of their time and energy to mimic a behavior that serves no purpose other than to meet societal expectations.

6-year-old Carl is carrying a big bowl of paint and soap and water across the patio. I have told him I don’t want him to bring it into the house, but I know that when he is busy having Ideas, he is likely to forget, ignore, or not even notice the rules.

“Carl, where are you taking that?” I ask. No response. I’m not offended. I know he’s not ignoring me “on purpose” or trying to be disrespectful. His mind is just too busy to process my request.

I step in front of him to make sure he’s aware of my presence.

“Where are you going with that bowl? Remember, I don’t want you to bring it into the house.” He notices the obstruction in his path (me) and turns to walk around it. It’s possible that my words haven’t yet penetrated into his conscious awareness.

I step to the side with him, not letting him past. I speak clearly and firmly.

“Carl, I need you to tell me where you are taking the bowl. Where are you taking the bowl?” He stops finally, and looks at me. I can almost see the wheels churning in his head. Now I recognize his specific dilemma. He heard and understood my request, but, although he has significant verbal abilities, he can’t tap into them right now. His brain is too busy doing something else to produce language.

Have you ever found yourself multitasking too many things at once and finally said to the person you’re talking to, “Hang on a minute, I need to ____ and then I’ll finish what I was saying to you” (or some variation on that theme)? I know I’ve it happen to plenty of neurotypical adults: they get to the tricky part of a task and pause mid-sentence because they can no longer do both things at once. It happens with competing language processes, too, such as when you try to hold a conversation while still listening to the commentators when watching the game, or when you try to speak to one person while writing a text or email to another.

So I waited patiently for Carl to be able to switch gears enough to communicate with me. He wasn’t able to verbalize, but after several seconds he nodded with his chin towards a small table. “Ok,” I said, stepping out of his way. Message successfully sent and received, he turned his full attention back to his project.

It would have been very easy for us to get frustrated with each other here. I could have considered him rude and disobedient. He could have been angry with me for interrupting him (if I had been a stranger, he probably would have gotten upset). If I had pushed him to respond faster, or insisted that he answer me verbally, I might have completely disrupted his train of thought, resulting in an even longer wait, or a confrontational response, or a meltdown. But I chose to work with the way that he works, and as a result, we both got what we wanted.

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.

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/

 

A Day at the Beach in Autism-Land

April 10, 2015 1 comment

Once upon a time, I realize sadly, I would have thought there was something “wrong” with a child like this one. I would have been ill at ease around him when I was a child myself. Painfully timid in my own childhood, I had almost a phobia of anything that stood out from the normal and drew attention to itself, completely unaware that I was one such subject myself. I didn’t “speak” fluent neurotypical then, but neither did I speak autistic, at least not in the sense of being able to relate to most other autistic people (though I suspect one of my few childhood friends would have qualified for a diagnosis of what was then called Asperger’s syndrome).

Now I speak passable neurotypical, and quite diplomatically at that. I also speak passable autistic– perhaps not with perfect fluency, but enough to make friends among its native people. Neither language requires much conscious effort on my part, except in extreme situations. “Speaking” is a metaphor here– it’s much less about verbal language than about mental and behavioral language. Perhaps I bridge the gap so well because my brain’s native language is verbal– like that of most neurotypicals– but its syntax and vocabulary are closer to autistic.

Language is on my mind because I think my young companion at the beach today speaks a very different neurological language than I do. His mind, I suspect, does not yet think in words. He seems to understand words that others say, although I have yet to gain a sense of his level of language comprehension. He shows no interest in words, so far as I can tell. I should mention that today was only my third time working with him, but within a few hours of our first meeting (when I introduced myself by reassuring him that I wasn’t there to make him sit at a table and do things), he identified me as an acceptable adult to trust and ask for help with things.

A neurotypical observer of us at the beach today would probably have identified little interaction, much less cooperation, between us. The same observer might not have known we were playing and having fun, except by looking at our smiling faces. They would have seen, mostly, a young woman meandering along the beach with an elementary-school boy, about 1-3 meters (yards) from him at all times.

The boy jumps on the wet sand at the water’s edge, squats down to gather a handful, tosses it to himself for a few minutes, repeats. He stands, lopes a few feet down the beach. Bends backward to stare at the sky. Stands with his head and leg angled to one side, like a dancer caught mid-turn, looking down at his own heel. A phrase from a piece of autistic performance art comes to mind– “stiff and stimmy, stiff and stimmy.” One hand flaps rhythmically, sometimes hanging down loosely from the elbow, at other times up near his face, his elbow bent. (I wince, recalling that as children we used that gesture as a derogative  to indicate intellectual disability). He dashes into the surf and back, jumps, twirls, crouches, kneels, kicks water, scoops sand, again and again and again. Sometimes he brings sand to his face, smells or tastes it carefully. He is smiling broadly almost the entire time.

The boy is never silent. He shrieks, growls, makes sound effects, gives bird calls, vocalizes vowels, and hums– sometimes a few notes, sometimes a recognizable line or two from a song. I repeat a hummed phrase with him maybe 10 times, obviously knowing it yet unable to place it, until I finally recognize it as a middle line from a Christmas carol. Over perhaps an hour, I recognize half a dozen songs– children’s songs, mostly, in both English and French– all hummed perfectly in tune. He does not say or sing any words.

I walk along the beach near him, not crowding. I stoop to pick up shells, rocks, or seaweed. I draw patterns in the sand with my hands and feet, dig holes, make piles and shapes of sand that the boy often comes over and takes from my hands to play with. Sometimes I hum what he is humming, or join him in a yell of excitement or joy. Sometimes I hum or sing something else. Often I am quiet. I, too, am usually smiling.

Here’s what a casual observer does not see: every ten minutes or so, the boy looks up at me, as if making sure I’m still nearby, and smiles when his eyes meet mine. Although he walks looking at his feet, he manages not to bump into anyone on the busy beach. Only once or twice does the water and sand he is flinging about come near to hitting anyone. On those occasions, I come over, tap his arm, and remind him to please be careful not to get sand on other people. When he wades deeper into the waves, with me walking alongside him, he comes over to hold my hand, not letting go again until we’re back in the shallows. He doesn’t try to go in the water any deeper than where he can stand firmly, a level of safety-awareness that even many neurotypical children lack. His mother comes over at one point and asks if he is ready to leave. He gently but firmly pushes her away. At one point he takes my hand and pulls it toward his jacket. “You want me to take your jacket off?” I ask, and take hold of a sleeve. He pulls away, then brings my hand to his jacket again. “You want me to zip your jacket up?” I guess, and he stands still while I do so.

Here’s what I almost miss: a number of minutes after I pick up an interesting rock, he picks up a rock. He tosses it to himself for a while, then hands it to me to hold. Usually, as I draw patterns in the sand, he ignores them. Sometimes he comes over and steps on them. I wonder if perhaps he wants me to stop, but then I realize he’s just trying to experience them in a tactile way. Much later, he begins using his own feet to make patterns in the sand. I assume this is something he’s always done until his mother expresses surprise. I realize he’s been paying close attention to me all along.

From time to time, I tap his arm a few times to get his attention and point out something– a kite, a pelican, a crab– or make a request (“let me take your shirt off before you get in the water,” “We’ve gone far enough– let’s head back towards your Mom now,”).

I learn about the texture and feel of the sand in great detail. The warm, fine sand that lies dry above the tidemark. Sand swirling in the water against my legs. Watery sand between my toes as the waves retract. The innumerable textures and behaviors of sand between wet and dry– it’s fascinating stuff, really, the physics of how it moves and dries, clumps and scatters and melts. I stomp, place my foot lightly, press down, try to make different depths of footprints. The sand here is wonderful– white and black grains of slightly different weights that settle into beautiful patterns, and golden flecks of mica throughout both.

It’s a perfect afternoon, spent with a perfect companion. I wonder many things, about what he knows and doesn’t, when he will acquire certain skills that most children his age perfected long ago, when he will begin to communicate in words. I wonder what occupies his thoughts, remembering my own childhood hours of telling myself stories as I wandered back and forth in the yard. I wonder what it’s like to think in something other than words. I wonder what kinds of things he should be taught now, and how best to convey them, and how I would know whether or not he understands. But I have no fear– either of him or for him. He is obviously intelligent, happy, alert, and generally cooperative and considerate when he is aware of what others want from him. I can’t understand how anyone could think there is anything “wrong” with a child like this.

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.