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Shifting Focus: Autism, Understanding, and Obedience

December 14, 2014 5 comments

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

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

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

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

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

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

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

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

But let me offer a possible alternative explanation.

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

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

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

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

Proposed Guidelines for the Safe and Ethical Application of ABA Methods

December 13, 2014 4 comments

Please note: This post is a work in progress.

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Behaviors targeted for modification or extinction must meet the following criteria:

  • The behavior creates a physical safety risk for the client or other people, or causes significant damage to the surroundings. Behaviors may not be targeted for elimination/modification on the grounds of being atypical, embarrassing, annoying, or socially unexpected. Behaviors that involve social appropriateness may qualify if they involve the client physically interacting with strangers (eg, inappropriate touch, attempting to remove someone’s clothing, grabbing other people’s belongings, etc.)
  • All reasonable accommodations have been implemented to alter the antecedents before any attempts are made to modify consequences. In normal language, this means that you address the triggers for the behavior (such as stress, situational factors, and the behaviors of other people) before using tactics to discourage the client from doing the unwanted behavior.
  • The client is given a clear verbal and/or visual explanation of what behavior is unwanted and why. The rules given must be clear, explicit, and consistent. If the behavior has an identifiable communicative component, the communication must be acknowledged and the client must be offered an alternative means of communicating the same message and having it respected (eg, if you teach a child not to hit others when touched, you must also provide them with another method of clearly stating “don’t touch me.”)

Behaviors targeted for acquisition must meet the following criteria:

  • They aim to improve the client’s independence skills, self-care and ADL skills, or effective communication (preferably in whichever modality the client acquires most easily). Other behavioral goals can be established if and only if: they will improve or expand the client’s opportunity to gain an education or participate in activities of the client’s choosing, AND the same opportunities cannot be provided by reasonable accommodations.
  • The behavior or skill being acquired is one that can be reasonably learned by rote. No studies exist showing a more effective way for the client to gain the skill. Dyspraxia and other physical difficulties must be acknowledged as possible barriers to skill acquisition. If practice appears to cause significant distress to the client, the program should be re-evaluated.
  • The goals and reasons for them are clearly stated to the client verbally/visually. If the client is capable of providing input on goals, their input should be taken into account as much as it is with a neurotypical who is being trained in a skill.

Additionally:

  • The client must be allowed the maximum possible participation in session planning.
  • Parents and clinicians shall not speak about the client in their hearing as though they are not present.
  • The term “noncompliant” should be replaced by something more neutral.

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Thoughts?

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

December 13, 2014 2 comments

This post continues from part 2

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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.

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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.

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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.