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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.

Autism Awareness Month: Before You Light It Up Blue

March 27, 2016 2 comments

It’s almost April, and you know what that means. “Autism” is the word of the day. Speaking of words, many of us were told:

“Sticks and stones may break my bones, but words can never hurt me.”

I think we all know that’s not true. Words can hurt a lot, even words that aren’t meant to be hurtful. So I want to talk about words.

If you are planning to raise awareness about autism this April, please remember: children and adults diagnosed with autism will be listening to your speeches and reading your blog posts and articles. This means your kids. If not your kids, someone else’s. And they often hear or read words like “tragedy,” “crisis,” “burden,” “expensive,” and “stressful” when describing their lives.

These words can hurt feelings and damage self-esteem. They can make children feel guilty and miserable, because something about them– autism– causes so much trouble and unhappiness. They might even wonder if their families would be happier without them. And no child should ever have to wonder that.

I’d like to suggest some other words to use.

  • No one wants to be part of an “epidemic” or “public health crisis.” Instead, say “many more people are now being diagnosed with autism.” Also, please don’t compare autism to life-threatening illnesses like cancer. It isn’t fair to either autism or cancer.
  • Many people argue about whether to say someone is “autistic” or a “person with autism.” Read arguments for both sides (the formal terms are “identity-first language” and “person-first language”), especially ones written by people with an autism diagnosis. If you are speaking about a particular person, ask them which term they prefer. Saying that someone is “on the autism spectrum” is usually a good compromise. Please don’t say that someone “suffers from” autism– it’s just too depressing!
  • Instead of saying that autism is costly, stressful, and a burden on families/society, talk about how to make things better! Say things like “autistic people and their families need our support and understanding,” “people on the autism spectrum deserve access to more services and opportunities” and “we can all contribute to a better future for children diagnosed with autism.” Remind the public that proper education and work accommodations pay for themselves because they allow people with disabilities to live more independent and productive lives. Most importantly, remember that finding happiness and meaning in life are possible for all human beings, no matter how severely impaired.
  • Suggest ways to help in your community. Encourage local businesses and organizations to plan autism-friendly events. Remind people to be patient and sympathetic when they see someone having a meltdown. Promote jobs for people with disabilities. Give money or technology to special education classrooms. Donate a book by an autistic author to your local library. Sponsor a disability-rights lawyer or expert on disability services to speak at a public event. Fund a field trip or summer camp for kids on the spectrum.
  • Share positive stories. Every life has success stories and wonderful moments. We see great strides forward in the world of autism every day. Young people like Carly Fleischmann, Ido Kedar, Dillan Barmache, and Jordyn Zimmerman are changing our understanding of autism, showing us how much is truly possible even for those who are profoundly disabled.

Create hope, not despair. Spread love, not fear. Move beyond “awareness” and aim for acceptance and inclusion. Our children are worth it.

Fever Dreams and Philosophical Musings

Last night, I fell asleep with a mild fever. My life chased me into my dreams.

***
In my dream, my client breaks something while I struggle to help his mother in the kitchen. His ABA team makes him stay up all night cleaning, and in the morning a troop of therapists convenes to discuss how he needs even more ABA. I’ve met many of them before, but I’m having trouble telling them apart, and can’t decide which of them might be sympathetic to my objections.

I argue passionately for less ABA, more communication training. A supervisor sneeringly asks if I mean that faked “facilitated communication” nonsense. The scientists in the room shake their heads sadly. I respond that RPM leads to completely independent typing– look it up! I also point out that a lot of different things fall under the category of “facilitated communication,” mentioning a video I’ve seen in which the only “facilitation” necessary is a gentle hand on the back of the person typing. You can’t control what someone types that way, I insist– just try it! I volunteer to type while a scientist tries to control my typing with a hand on my shoulder. She cheats abominably, but still can’t force me to type what she wants.

The room grows fuller, as adults with physical disabilities arrive to make the point that being a disabled adult is not a horrible sentence. Almost every hand in the room is raised with points to make, and I have more to say but despair of being called on any time in the next hour…
***

Yesterday, in my real life, an ABA tech mentioned children who were getting 40 hours a week, plus other therapies.

I asked if she didn’t find that tragically sad– the idea of small children having to work more than 40 hours a week. She said she’d rather they had to do 40 hours a week now, and grow up to be functional members of society. (There was a time when I would have agreed with her. The ABA industry mixes up some strong Kool-Aid.)

I didn’t have a way to put my disagreements into words then– there were so many of them crowding my brain. I think I can do so now, though,

1) False dichotomy. There is plenty of evidence (some of it even in ABA studies) that ABA is neither necessary or sufficient for independent adulthood. In less technical terms: Some kids get lots of ABA and grow up to be independent adults. Some kids get lots of ABA and do not grow up to be independent adults. Some kids get no ABA and do grow up to be independent adults.

2) If you’re going to argue that ABA at least gives a better chance that the kid will grow up to be an independent adult, you’ll have to show me some darn good math. You’ll also have to take into account that scientific studies on autistic kids who grow up without ABA barely exist at all, and you can’t make a logical argument that one condition is better than another when you’ve only researched one of the two.

3) I’m also going to lay down some serious objections to the idea that a person needs to be a “functional member of society” in order to have a valuable and meaningful life. There are many people in my life who have inspired me, made my life better, or loved me, or who I have loved. None of those things has ever hinged on whether or not the person could earn a living, speak verbally, live independently, or pass as “normal.”

4) Even if I accepted the premise that ABA=independent adulthood, I would still object. Because, “functionality” at what price? The price of a childhood? An individual’s personality? Their self-esteem? Their happiness? I would not sacrifice any one of those things, and I have known and read about autistic adults who believe that ABA stole those things from them. That alone should give anyone pause– and I do think that if most parents and therapists and ABA techs were truly aware that this was the potential trade-off, they’d hesitate, too.

There’s more to becoming a well-rounded adult human being than learning to sit still or tie one’s own shoes or participate in social niceties. There’s emotional development, and I believe that childhood– an unfettered, exploratory, play-filled childhood– is an integral and irreplaceable part of that development. For counterexamples, look at the emotional damage done to children who lost their childhoods too early– to abuse, to war, to parental drug abuse, to any of the things that make children grow up too fast. There are an uncanny number of similarities between adults from abusive childhoods and adult autistics– and all too often, those are one and the same. And frequently, that abuse has, at least in part, taken the form of a relentless battle on the part of adults to turn the autistic child into something they are not and can never be– a non-autistic adult.

So, if those are my options, I will happily volunteer to change an autistic person’s diaper every day for the rest of my life, or cook their meals, do their shopping, help them cross the street, or whatever other “functional adult” tasks they can’t do alone. Because I love the children I work with, exactly the way they are. And while I do want to help them acquire as many skills as possible, I wouldn’t do it at the price of changing who they are, losing their sense of fun and humor, or making them feel that they aren’t good enough, or teaching them that behavioral control is more important than their comfort, their safety, their right to communicate naturally, and their happiness.

Small Miracles

Here’s the flip side to my last post. Here’s what makes this job worthwhile.

***

Yesterday, an autistic child whose average attention span is about 30 seconds curled up next to me on the couch and let me read almost 30 pages of “The Reason I Jump” out loud.

Yesterday, a girl who generally insists on my undivided attention and loses her temper at the drop of a hat let her sister select several songs in a row without resorting to violence.

Yesterday, a mother who is very strict and concerned with appearances in public lay down on the bedroom floor with her son to cuddle. They were both smiling blissfully.

Yesterday, a parent apologized for interrupting a disabled child’s conversation.

Today, I watched an autistic child tolerate, with good humor, the fumbling attempts of an ABA tech to engage in play-based interaction. The parents are being patient, hoping that they can teach the neurotypical tech how to better interact with autistic children. The kid is being a good sport about it– probably better than I would have been. I think this also answers my question about whether ABA can be totally benign: yes, so long as the family knows what boundaries to set and teaches the kid not to take it too seriously.

Today, a mother felt renewed hope for her child’s future.

Today, the most profoundly autistic child on my roster did so many things I’ve never seen before that I stopped counting. Among them: voluntarily paid attention to something an adult was showing him, used the toilet without prompting, calmly tolerated multiple adults conversing in his presence, shared a trampoline and eye contact with another child, and held a vocal (though not verbal) conversation with the same child.

Should I call these small miracles? Small miracles can be huge. In fact, they are everything.

A Call to Action

June 29, 2015 1 comment

[Keep reading. I’m not actually talking about autism]

No one wants to admit this. There is a crisis in this country and across the world. An epidemic, if you will. There is a terrifying large percentage of people with a certain disorder of brain function that involves major deficits in many key areas– including sensory perception, attention, reasoning, communication skills, the ability to prioritize appropriately, and expressive empathy (the ability to respond appropriately to the emotions of others). No one knows for sure what causes this disorder, but both genetics and environmental factors seem to contribute strongly.

These people need our help. Without intensive intervention, most of them will never recover, although some do improve greatly over time on their own. Unfortunately, very few of them are aware that they need help, and even fewer accept that help when it is offered. Teaching them is a long, laborious, intensive process requiring massive amounts of repetition. They just don’t listen. Even when we carefully tailor lessons to their learning style, they learn so slowly, and are so resistant, that it is easy for us to want to give up on them altogether.

We must not give up. These people require billions of dollars worth of services every year. They waste much of their time on worthless obsessions and activities that are useless at best and outright harmful to themselves or others at worst. And while most of them are non-violent, far too many cause serious stress and even pose a physical danger to their families. Many of them become aggressive when asked to change even minor habits and beliefs.

Despite the vast amount of scientific literature on this population, we’ve made very little headway in terms of developing effective strategies to change their problematic behaviors. I should acknowledge that not all people with this disorder demonstrate those behaviors. Some are very high functioning– we tend to see them as quirky rather than burdensome. Others, however, are a serious challenge.

Something needs to change here. As hard as it is for us, as frustrating and heart-breaking as it is to reach out, day after day, to people who seem to have little hope of responding, we cannot simply give up. We need to put serious money towards research, towards training educators and therapists. We have to find a way to help these people become functional members of society, who contribute to the greater good and are no threat to themselves or others.

This tragedy must be halted in its tracks. Help fight the ravages of neurotypicality. The well-being of our children, our nation, even our planet, depends on it.

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

December 13, 2014 2 comments

This post continues from part 2

***

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

1) Data Tracking

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

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

2) Focus on Facts

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

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

3) Providing Consistency

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

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

****

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

1) Fictional Scenario: Self-Feeding

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

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

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

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

 

2) True Story: Stuck on “No”

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

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

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

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

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

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

 

3) True Story: All Done and Then Some

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

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

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

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

***

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