Things that need saying

This blog is where I write primarily about disability rights, both from my job and from my own experiences as a person with chronic illness.

I  have a BS in psychology, with a concentration in cognitive and neuro psych. Since graduation, I have worked as a psychology research assistant, tutor, and as a caregiver for children with assorted developmental disabilities. This last is my true passion, and this blog is written largely on behalf of the wonderful children and young adults who are my clients.

A note: as they say, “the names have been changed, but the stories are real.” I have altered many details in my posts to conceal the identity of my clients as much as possible. And dialogue is generally not exact, as my memory is, well, memory. However, I have not made any of these stories up. These are all things that happened, both the good and the bad, the heartbreaking and the incredible. Such is life, particularly where children are invovled.

Advertisements

Autism and Mindfulness

It’s the start of winter break. His family are paying me privately this morning so that I can take him in my car. His mother has been in the hospital for several weeks, and the strain shows on everyone’s faces, including his. I arrive to find him and his elderly Tia Rosa sitting morosely on the porch, shadows in their large, dark eyes. He smiles at my arrival, though, and his aunt smiles at his smile.

“He happy when you come,” She tells me in her broken English, which is about as limited as my elementary Spanish, “All the time, he worry, but now happy.” I hold out a hand and my client takes it. I walk him to the car, settle him with his backpack, make sure he has put on his seatbelt.

“Is there anywhere particular you want to go today?” I ask. He looks at me with tired eyes. “Walking? Hiking?” I suggest. No response. “Do you just want drive around and listen to music. Just a car ride?” A small nod.

“OK.” I pull up a map and pick the most winding, back-woodsy-looking road I can get to easily. We set off and I put a CD (yes, I still use CDs) into the player. I’ve been rehearsing the chorus for Handel’s “Messiah” for an upcoming event. Last time I visited, I was singing bits of it as he sat tossing a ball to himself and he perked up, so I put it on my phone and we listened to it for the rest of the afternoon. Perhaps it has happy associations for him, although I know that holidays are often the most stressful time of year for autistic people, with all their bustle and parties and change in routines. I’ve noted in the past that he seems to like Christmas carols. I wonder if his family has some special traditions that he enjoys, and wish I could ask, but the rest of the family speaks even less English than Rosa.

Part of me wonders if this is a stupid thing to do, driving around aimlessly, wasting gas, having a kid sitting in the car instead of trying to make him get some exercise and fresh air. And then we reach a stoplight and I peek at him again in the rear-view mirror, and all my doubts vanish. He’s leaning back against the seat, a blissful smile on his face, the hollow look gone from his eyes. It means so much to me, that smile. The fact that I can help him find moments of happiness in the midst of stressful times– it’s why I do this job in the first place.

I have a momentary flashback to myself as a teenager, my feelings all knotted up inside, feeling permanently on edge, and being soothed by the motion of the car, the feeling of being enclosed and isolated from the rest of the world, of not having to take any actions or participate in anything. And I’ve always found something special about listening to music in a car. I’m not a fan of loud volumes, but I love the way music can fill a small space and become an integral part of it.

The road I have chosen is even windier than I thought, and I find myself slowly climbing the switchbacks of a small mountain, where a sign informs me that the region bears the inexplicably oxymoronic name of “Highland Valley.” I point out occasional sites along the way, and offer short tidbits of information or local history from time to time.

He is clearly enjoying the music, and hums along to the occasional phrase. Last time, as I left, I told him “I expect you to have this piece memorized by the next time I see you! No, I’m only joking.” But now, as the second track ends, he whistles a quick bit from the next part before it starts, and I realize that he probably does know the whole thing by heart. While I’m sure they exist, I have yet to meet an autistic kid who doesn’t have an incredibly good ear (and memory) for music.

We reach a nice overlook and I park. I ask if he’d like to walk and he tentatively agrees, but after less than five minutes of strolling, he drags me back to the car. He doesn’t ask me to drive, but simply sits in the back seat, gazing quietly around, for at least half an hour. I speak to him from time to time, and he doesn’t seem to mind.

“Are you happy just sitting here?” I ask, and then remind myself that I don’t need to ask– his calm demeanor speaks for him. Why do I keep feeling like we (or at least I) have to be DOING something? He doesn’t want to do, he wants to simply be, and he wants me to simply be there with him.

He’s been having a rough time emotionally, and lately he seems to need time and a “safe space” to process his feelings. When we are together, he sometimes sobs and storms. He firmly turns away any offers I make — food, drink, hug, a change of location– and sometimes instructs me to give him space by leading me a small distance away from him and turning me to face away. Moments later, he is content again, only to burst into tears again soon after. It’s like a series of little cathartic moments. I wish I knew what’s on his mind at these times. But perhaps it wouldn’t help to know. They probably aren’t problems I could fix anyway.

It’s so hard to just do nothing while I watch him in pain, but that’s exactly what he needs. He doesn’t want to be fussed over or told to cheer up. There are times when a person just needs to feel the sadness and get through it. And there are times when other people’s emotions can feel as overwhelming as your own. Perhaps it is my generally calm manner that he appreciates, rather than any specific thing I do or say.

“I know it can be really hard to be around other people who are stressed out,” I tell him now, “and there’s a lot of stress at your home right now. I understand if you just need some time away to recharge.” He smiles slightly, which I hope is an indication that I’m right.

When I take him home, he seems relaxed, and I feel relaxed as well. He has reminded me how nice it is to sit somewhere beautiful, with another person, with no pressure to interact or take part in a specific activity. I need that as much as he does. I’m not a particularly calm or stoic person by nature. I am emotional, and easily overwhelmed. The sheer quantity of problems in life seems daunting, often unbearably so. So many things that I can do so little about. Sometimes I wonder how anyone can bear it. Contrary to popular opinion, most autistic people are actually deeply caring and empathetic, often to the point where we are too paralyzed by our feelings to actually figure out what to do with them. And so I know how critical it is to seek out those small things that make us happy, to make space for the peaceful moments that sustain us through the harder times.

His aunts cluster about me on our return, urging food at me as though I am in danger of starving after a whole two hours out. Although I should be getting home soon, I give in and let them feed me, and wish I could cook half so well. Their gratitude for taking their nephew out surprises me, and I am reminded that much of what I easily intuit about him seems to baffle others. I might not know the cause of a particular frustrated moment, but I have some grasp of how he feels overall, of how confusing and overwhelming and unmanageable the world can seem to a sensitive soul. And I have some idea what can make those feelings a little easier to endure. Calm moments. Music. Beautiful vistas. The freedom to cry without feeling judged. Time and space without demands. Acceptance, always unconditional acceptance. My job is an ongoing lesson in mindful living, and it’s one of the best things that’s ever happened to me.

Engaging Autistic Attention

The boy is sprawled on the floor next to me, intently focused on his toys. At 5 years old, he is great at repeating words and can say a handful of things independently, but rarely does so without prompting. His mother is concerned that he doesn’t quite have a solid grasp of numbers yet. He can count, but when looking at multiple objects, he’s more likely to assign them letters than numbers, essentially “counting” A, B, C, and so on. It’s unclear if this is an actual misunderstanding on his part of how counting works or simply a reflection of his fascination with letters. Right now he’s playing with plastic dinosaurs, arranging and rearranging them. I plop myself down beside him, right outside the area of his playing, where he can see me in his peripheral vision, but where I am not intruding into his personal space.

I open the book I’ve brought with me, “Over in the Ocean in a Coral Reef,” a wonderful adaptation of the children’s classic “Over in the Meadow,” but featuring sea creatures, which I know he loves. The book’s “illustrations” are actually pictures of bright, 3-D scenes created from clay with marvelous attention to detail. I’ve pre-selected a handful of plastic creatures from his toy bin that match the ones in the book as closely as possible. I begin to read in a normal voice, making hand gestures, counting the animals on the page with my finger, and wiggling the plastic creatures as they appear in the book, sometimes moving them around the outskirts of his game area, not close enough to interfere, but close enough that the motion will catch his attention.

I don’t tell him to “look.”
I don’t exaggerate my voice to sound loud or excited.
I don’t get between him and his toys.

He doesn’t appear to be paying attention, but I know better. Around page 6, he starts incorporating sea creatures into his dinosaur scene. I read on in calm, measured tones. At 7, he finishes counting with me as he plays, still without turning towards me, although I suspect he can see the book fairly well from his angle. At 8, he looks directly at the book and counts the animals on the page with his finger.
“Eight!” He finishes excitedly.
“That’s right,” I smile and nod.

I don’t make a big deal about his accomplishment, no cheering or fake excitement. What the behaviorists haven’t figured out is that, for autistic people, learning is always its own reward (as it should be for everyone! Waldorf/Steiner schools know this). And if an autistic child doesn’t seem interested in learning something, it’s because you’re teaching it in the wrong way, or at the wrong time, for their individual brain. We don’t read because we want praise or stars or stickers. We do it because it fascinates us. It’s true that it’s hard to keep us focused on something we find boring. But why ask a child to be bored? Find the things that interest them, and teach about those. Wait for topics to catch their attention instead of trying to enforce a curriculum. We’ll get to those other subjects eventually, and when we’re ready, we’ll learn them faster than most non-autistic people could. We can also learn different lessons through the things that interest us, as this boy is now learning about counting as a side effect of his love for animals.

The boy flips the page, eagerly counting the animals there, and turns the page again before I’ve finished reading. He grabs the book for himself, flips through the final few pages, and closes it. I smile, and wait. There will be time later to discuss things like sharing, asking before you take something, listening patiently, and so on. But right now, I don’t want anything to interfere with his pure interest. He closes the book and sets it down. I open it to the beginning again, and this time, he’s setting up plastic sea animals on the page before I’ve finished the first sentence.

We don’t get to the end of the book this time– he’s already off to set up a new game with the plastic sea creatures. But we’ll come back to it. And I won’t be surprised to see him incorporate counting sea animals into his future games. Then, who knows? Maybe we’ll count plastic dinosaurs tomorrow.

Autism Appreciation

This is a post I started in April, but then stuff happened and I didn’t finish it. So let’s just pretend this is Autism Appreciation Month. Actually, all months should be a time for appreciating autism.

***

Twice, recently, people have complimented me on how positive I am towards and about my profoundly autistic clients– you know, the “severe” ones who don’t talk and self-injure and have all sorts of “Behaviors.” People seem to think it’s special that I consider these kids awesome. They congratulate me when I talk about learning to communicate with them in their own nonverbal languages, when I see their good points rather than their so-called deficits.

I find this both baffling and somewhat sad. Why doesn’t everyone see these kids the way I do? I’m not being charitable towards them; I honestly enjoy their company, often more than I enjoy the company of neurotypical adults, and certainly more than I enjoy the company of most non-autistic children.

Really, what could be better than spending an afternoon with someone who enjoys my company but doesn’t expect conversation? Isn’t it more fun to be out and about with someone who notices the oddest little things that others overlook? What’s not to love about seeing someone jump and flap with excitement when they see something they like?

And if they sometimes lash out, or show me that they are in pain, how can I blame them? It’s hard to be a child even when the adults around you do speak your language– imagine how overwhelming it must be when they don’t! But I’ve found that showing sympathy and respect even when I don’t understand goes a long way towards bridging that gap and reducing those “behaviors” that bother others so much. Working to create a small, shared world between two very different people (such as those who speak another language or come from another country) is a magical experience to me, far more enjoyable than playing a team sport or engaging in a competition.

***

I am also amazed by how much people often manage to overlook the strengths that come with autism. Let me start this part by stressing that I am Not saying that autistic people are childlike. However, many of them keep certain skills that neurotypical people usually lose at a young age.

Autistic people have a certain intensity of focus, an ability to ignore the irrelevant and see beyond the obfuscating obvious. They are able to enjoy themselves with equal intensity, with an unselfconscious joy that everyone should envy. Sadly, many autistic people so end up self-conscious about their behavior, but only because other people have taught them to be. Even in those cases, adult autistics usually retain the ability to be playful and creative in ways that most non-autistic adults aren’t. We see nothing awkward or “too silly” about joining in a child’s activity. We don’t feel too dignified for a game of make-believe or for sitting on the floor or for loving a children’s story.

By the age of 3, non-autistic children start being judgmental about other people’s appearances and adherence to social norms, and by age 5, they are downright cruel to others who don’t meet their standards. Many of them never outgrow this behavior, and those who do often don’t outgrow it until they are adults. Before they learn to be polite, non-autistic children will come right out and tell me if they think I don’t look nice or that I am awkward. I’ve never had an autistic person, verbal or not, show this kind of pettiness towards me.

Non-autistic children are fiercely competitive, obsessed with the idea of being better than one another, which is another way of being judgmental. Autistic children are rarely so focused on creating these kinds of hierarchies, although non-autistic adults try very hard to teach them that winning is important by insisting that they play structured, competitive games, at which point they might get obsessed with winning, probably not because they care about besting others, but because autistic people tend to be perfectionists.

***

Obviously, everyone is different, and of course there are some autistic people who are very competitive, or exclusionary, or focused on meeting arbitrary social standards. But in my experience, they are relatively rare.

Autistic people are thoughtful. We enjoy our own company and can easily keep ourselves amused for hours on end. We are innately curious, and enjoy figuring things out, even if those things aren’t what others expect us to be learning.

Some people look at a child who has taken apart their toys and see destructiveness, misbehavior, and a nuisance. I look at the same child and see mechanical intelligence and insatiable curiosity. They look at a child who won’t stand in line doing what the other children do and they see disobedience or inattention or perhaps non-intelligence. I see a child who doesn’t care about conformity, who has other activities on their mind. A boy who crashes into things around the house may simply have trouble controlling his body or need more sensory input. A girl who seems cranky and picky may just have an unnoticed sensitivity to something that is easily avoided. A child who doesn’t speak may have a mind full of wonderful music or remarkable images or creative ideas, and just needs to learn a way to share those things with the rest of us.

Autistic people aren’t flawed versions of “normal” people. They have wonderful and fascinating characteristics of their own, and those things are so often overlooked because everyone focuses on the more obvious “deficits.”

Stop trying to help autistic people become more “normal.” Of course, help them learn to communicate and to do things for themselves so they can be independent. But that doesn’t mean they have to do things the same way you do. It doesn’t mean they have to play with their peers in order to have fun, or sit at a desk in order to learn, or care whether their socks match or their shirt is on frontwards. These things aren’t necessary in order to enjoy a good life.

***

Love the autistic people in your life the way they are. Appreciate them for being their own autistic selves.

In fact, try and learn to be a little more like them. Reduce small-talk and other unnecessary speech. Become more aware of the sounds and textures and odors around you, so that you discover new things to appreciate and notice when others are too loud or strong. Stop comparing yourself so much to others and judging people (including yourself!) on arbitrary social standards. Compete less; play more. Observe. Think. Question the obvious. Develop your own tastes rather than going with what’s popular. Stop worrying about whether you look dignified or silly and just enjoy an activity. Be in the moment. Do something impulsive. Watch how someone does something without interrupting or trying to teach them how to do it your way. Let your body express your emotions. Find something mesmerizing to focus on. Shout for joy. Run around with no specific goal. Imitate birdsong. Be different. Let something random catch your attention. Rethink your priorities. Accept that the world is larger and stranger and more complex than you ever realized.

Steps Towards Communication

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

***

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

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

***

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

***

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

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

***

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

A “Dear Researchers,” post

I have an idea for you! ( And I hope this will be the first of many such posts.)

In any social science, there are so many questions that go unasked, so many unnoticed assumptions, and so many ways that data can be interpreted. Sometimes, you need an outside perspective. Here’s one for you to consider:

One of the classic “early signs” of autism is an aversion to being touched/held, even in infancy. This aversion seems to support the hurtful (but sadly still prevalent) idea that autistic* people are innately bad at forming “normal” connections with other human beings.

I suggest a different interpretation. My hypothesis: early touch aversion is not due to discomfort with human contact itself but to a related sensory sensitivity. Support for this hypothesis would:

1. Weaken the notion that autistic people have an inherent deficit in the ability to bond with other humans.
2. Change primary caregivers’ emotional response to touch aversion. Understandably, many parents interpret touch aversion as personal rejection by their child, and this can be very damaging both for the caregiver and for the developing parent-child relationship.
3. Suggest a very different early intervention track focused on sensory accommodation and sensory integration rather than on reinforcing typical social responses such as eye contact. I would go so far as to speculate that addressing sensory needs earlier might actually forestall or mitigate the social withdrawal shown by so many autistic children and likewise presumed to be an inherent aspect of autistic neurology.

With this in mind, I would love to see studies addressing the following questions about the development of touch-averse responses in infants, many of whom are later diagnosed as being on the autism spectrum (and what of those touch-averse babies who aren’t later considered autistic? Another great area for potential study):

•  Could the baby be reacting to something on a primary caregiver, like a perfume? Hypersensitivity to many of the chemicals  we ingest or inhale is common in autistic people, affecting everything from food preferences to medication dosing to tolerating public spaces. Resistance to being held might result from something as simple as Mom’s shampoo or Dad’s aftershave. (I suspect that it doesn’t take many uncomfortable experiences for a baby to develop a general aversion to being picked up by anyone.)

Tangentish bit: my personal experience of a chemical sensitivity.

My mother and I both have allergic reactions to the majority of manufactured perfumes. Not just the ones you spray on yourself but, you know, the stuff that’s in air fresheners and scented candles and deodorant and hand soap and carpet cleaners and many, many more things. Fabric softeners are among the worst offenders; since the fragrances are designed to remain even after washing (as they are in soaps and shampoos, which are also major culprits), they are incredibly difficult to get rid of. I’ve handled a single item of contaminated clothing and then spent over 20 minutes scrubbing my hands with everything from soap to salt to vinegar in an attempt to remove what most people would consider a pleasant smell. This stuff is on people everywhere. People who might hand you their coat, or sit near you in a car, or give you a hug, or (if you are small enough), pick you up and snuggle you. If you have an autistic baby/child, please switch to fragrance-free everything, at least for long enough to see if that makes any difference.

Tangent over. More questions:

• Does it make a difference whether the baby can see that they are going to be touched before the touch occurs? Autistic people often have exaggerated startle responses and find unexpected touch particularly distressing.

• Is the caregiver usually talking? Most of us instinctively use higher-pitched voices when speaking to infants (possibly because their hearing range is higher). But I’ve seen autistic clients wince or cry at the sound of higher-pitched noises, including the sounds people make.

• Does the type of touch matter? Many autistic people (as everyone now knows thanks to Temple Grandin) find gentle touch uncomfortable even to the point of pain but are soothed by deep pressure. Some also prefer being touched through fabric rather than on bare skin, or prefer very targeted touch (such as a high-five or fist-bump) over being hugged, which involves variable pressure over a larger area.

The most important thing here is that, if my idea is supported, the distress of both infant and caregiver in these situations can be resolved by fairly small adjustments to the caregiver’s behavior. What a difference it would make to autistic babies and their families if the simplest of changes could restore opportunities for comfort and bonding provided by physical contact between parent and child!

***
[Ha! This was supposed to be a short note, just a few quick questions. More than 2 hours and nearly 800 words later… This is why I don’t write more often. My ideas tend to run away with me.]
***

* I use identity-first language (ie “autistic person” rather than ”person with autism” for reasons that have been written about extensively by various autistic adults and young adults. Curious? Please ask the internet!

Behavior Modification: Use Sparingly and With Caution

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.

Just Amazing

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

***

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

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

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

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

***

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

***

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

***

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

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

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

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

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

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

***

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

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

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

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

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

***

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

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

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

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

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

Accept. Love. Encourage.

Keep accepting. Keep loving. Keep encouraging.

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

***

Here are things I say to him often:

Try.

You can do it.

I believe in you.

Try again.

Thank you for trying.

I’m proud of you for trying.

I know it’s hard.

You’ll get there. I know you will.

You can do it.

That’s better.

You’re making progress.

Keep trying.

It’s ok to fail.

You can try again later.

You’re wonderful.

You’re the best.

You make me happy.

Keep trying. You can do it.

I love it when you _____.

***

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

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

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