This blog is where I write primarily about disability rights from my own experiences as a person with disabilities and (more recently) disability rights activist. I also have a BS in psychology, with a concentration in cognitive and neuro psych.
Since graduation, I have worked as a psychology research assistant and as a caretaker for children with assorted developmental disabilities.
I am currently in the process of further editing this blog to ensure the privacy of everyone I mention in it. I am saddened to have to omit and change some details, as I greatly enjoy accurate descriptions, but with this blog slowly gaining more attention, I want to be certain that I do not violate the trust that families and friends have shown me in sharing their stories and letting me spend time with their wonderful children.
I work with kids of all ability levels. To me, they are all brilliant in some way, and I celebrate their every accomplishment.
There are the ones I know will go far, assuming no one breaks them too badly– the ones who show that “genius” streak already, in spite of language delays or motor skill difficulties.
There are the ones whose intelligence and potential I cannot judge at all.
And there are, at times, those I think will always need major support.
And I adore them all. I respect them all. They all deserve to be acknowledged as individuals and treated as real people. They deserve friends, fun, loving families. They deserve to have their preferences noted and their personalities appreciated. They deserve to be talked to, listened to (even if they can’t use words), read bedtime stories. They deserve to be dressed in nice clothing and taken out for treats. They deserve a turn at activities. They deserve the chance to try to do things themselves– over and over and over. They also deserve to have someone do things for them or assist them when needed.
Originally posted on Just Stimming...:
There is this thing that happens sometimes.
Parent has an autistic child. Autistic child doesn’t speak, or their speech isn’t an accurate window into what they are thinking. Autistic child is presumed to be very significantly intellectually disabled.
Years later, a method of communication is found that works for the child, and it turns out that they are in fact very smart. Very smart! The parents are overjoyed. They begin talking about presuming competence, the least dangerous assumption, that not being able to speak is not the same as not having anything to say.
They are so, so excited.
And they start talking about all the incorrect assumptions they had. If we’d known, they say, we wouldn’t have done X. If we had known they could read, think, hear us.
And it’s a big problem, because the way they talk…..they think the problem was that they treated their child like…
View original 266 more words
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.
Please note: This post is a work in progress.
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.
- 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.
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.
There’s one ABA team I work with who are, on the whole, pretty awesome. I’d like to give a few examples of things that make me happy about them:
– They acknowledge, in front of the client, that they know she understands a lot more than she is capable of expressing to us. They say things like “she’s having a hard time answering these questions” instead of “she doesn’t know the answer.” They are courteous.
– When she gets frustrated with a task, they don’t push or insist. When the client first says “all done,” they encourage “try again,” but if the client then says “no” or “you do it,” they respect her choice. As a result, she’s much more willing to actually try something again if she feels it is difficult but possible for her (or she wants to learn it).
– They not only allow the client to make activity choices, they also do a certain amount of power balancing, letting her direct them around and instruct them to do things. They also do a lot of the activities along with her. If she’s doing sit-ups, for example, her technician (or I) will do them as well. It’s not just an adult giving orders and a child being expected to follow them.
Here’s a story from last week that made me smile. It was an exciting day for the client– she had me, her ABA supervisor, and a new ABA tech all working with her. This is a very social pre-teen with multiple disabilities. She prefers communicating verbally, but has a fairly severe speech impediment. At best, her family understands maybe half of what she says– and less just recently, because she’s started using a lot more words and full sentences, which is very awesome but harder for us listeners to decipher.
We’re trying a relatively new activity– playing a matching game with cards, taking turns around the table. The client is obviously unenthusiastic at the sight of the cards. She gets the idea of putting them together in pairs, but doesn’t quite seem to understand the matching criteria. We each take two turns, and she has on her frustrated expression by the second one.
“I’m not sure this activity is going to work for her,” the therapist admits. We briefly talk about what might be wrong– perhaps the symbols on the card are too similar for her to distinguish easily, or too close together for her to count (she has some difficulty with visual tracking). Maybe “Go Fish” would be worth trying instead. In the meantime, we ease back to simply taking turns placing the cards on top of one another, which the client might find a little boring but at least not frustrating.
Near the end of the pile, the client says what sounds like “EEEnud.” “Did you say peanut?” we ask, baffled (there’s a lot of guessing involved when she speaks, and she’s generally very patient with us about it. Even better, she’s learning to sometimes rephrase or give other clues when we can’t figure out what she’s saying).
She tries again, and it sounds more like “eedhub.” “Eat up?” I guess, wondering if she’s hungry.
This time, she starts carefully chanting “Eenub, eenub, ebbuh-buvy…” at which point we all catch on at once and start singing with her “Clean up! Clean up! Everybody, everywhere…” (a short song that many therapists use at the end of an activity when it’s time to put away all the pieces). She’s prompting us to call it quits on this activity, so we do. And we’re all smiles, including the client.
That, my friends, is how you work WITH a child. Listen, respect feedback (verbal or behavioral), be flexible, take turns.
[This post continues a series started here]
One major way in which schools of ABA can differ is in their primary goal, their understanding of how ABA methods should be used.
1) Traditional Approach: Fighting Against Autism
Traditional ABA practitioners believe that it is inherently good for autistic children to appear, act, and communicate as “normally” (neurotypically) as possible. The gold standard here is the phrase “indistinguishable from one’s peers,” the idea that no one even has to know that this person is autistic. Many people even misunderstand this to mean that the person who attains indistinguishability has been “cured” of being autistic. That claim makes about as much sense as the notion that a person who wears a realistic wig has been cured of being bald. Sure, they may get fewer stares, but nothing about them has actually changed. And that wig might be uncomfortable enough that the person would rather not wear it.
There are innumerable studies on how to make autistic kids seem less autistic, and few (if any) on what advantages (and disadvantages!) seeming “normal” actually offers the autistic person. I won’t claim that there are no advantages– certainly, seeming normal is going to open a lot of doors in our society in terms of education, job opportunities, and social advantages. But at what cost? According to many people who have been through this therapy, the costs can outweigh the benefits by a lot (see sources list 2).
This is an area where the science is simply missing. The concept of autism as a disease or condition that needs to be cured has been so widely accepted that few researchers or other professionals have thought to challenge that fundamental assumption.
But if we look at the history of other disability rights movements, we start to see grounds for challenging the “medical model.” While many wheelchair users would like full body mobility, many others, particularly those born with their physical impairments, are very content with their life and ask only that the world be wheelchair-accessible so that they can have the same opportunities as anyone able-bodied. The majority of people born Deaf prefer to remain Deaf and use sign languages (which are complete languages, as complex and real as any spoken language, with their own culture, dialects, poetry, and so on) rather than risk partial (and painful) hearing restoration via cochlear implant (a wonderful example of what the world sounds like via implant may help non-Deaf people understand this preference).
And plenty of people make choices that others would find terribly limiting– not teaching their children multiple language, not having children at all, working in a career that is emotionally rewarding but not financially so, or the reverse, codes of dress or diet restrictions imposed by religious belief. What right, then, do we have to criticize someone’s preference for the comfort of repetitive activities? Why do we pathologize these people but not the thrill-seekers who perform dangerous stunts and participate in extreme sports?
The medical model assumes a basic “normal” state for the human body and mind, from which deviations are problematic. Closer observation of human history makes this viewpoint implausible. Genius and madness often run hand-in-hand (see Dr. Kay Jamison’s book “Touched With Fire”). People with reduced empathy are often the most successful financially (http://edition.cnn.com/2014/05/29/business/psychopath-andy-mcnab/index.html). Plenty of artistic and scientific geniuses struggled in other areas of their life, from socializing to mental health to financial management (Van Gogh and Mozart died in poverty, Einstein’s socks didn’t match, Emily Dickinson was a hermit, Ben Franklin was a womanizer… who’s “normal,” anyway?).
There are physical tradeoffs we rarely consider. Being extremely tall gives social advantages but increases the risk of heart problems. The pale skin so socially prized in many cultures around the world is an invitation to skin cancer. Sometimes we even make these choices deliberately, as when ballet dancers or boxers push their bodies to the absolute limits of human endurance, despite risking major health issues later on. We celebrate these people, but we’d also be pretty badly off if everyone in our society were an athlete or a distracted genius or a ruthless CEO. We need diversity of personality, diversity of interests, diversity of approaches to the world.
Sure, you say, but there are limits. It’s not like we actually want serial killers and people with PTSD all over the place. How do we tell when diversity is positive and when it is disruptive or undesirable? We have to look at some level of cost-benefit analysis, and I think the main relevant points to analyze regarding any condition are: Is it hurting others? and Is it making the person miserable?
Parents and professionals see autistic children struggling and assume that autism needs to be cured to alleviate that suffering. But this is often misinterpreting the actual problem, which is the mismatch between the needs of autistic people and the environments they live in. A wheelchair user isn’t going to be happy in a city full of stairs. You don’t take a bird for walks on a leash. You don’t feed dog food to a hamster. Someone with asthma might be perfectly well so long as they aren’t exposed to heavy air pollution. You don’t cure prejudice by telling the victims to stop being gay or Black or Catholic… or autistic.
But that’s exactly what traditional ABA is trying to do. Its faulty logic is: neurotypical behavior = neurotypical neurology. Standing out is bad and fitting in is good. Autistic people won’t be happy unless they learn to do the things that non-autistic people enjoy doing (such as socializing with groups of people or communicating verbally or shopping at the mall).This is the error I talked about parents making in the previous post. They want their children to be happy, of course– but they assume that the autistic person’s criteria for happiness are the same as their own.
When you start from this fundamentally flawed assumption, you are doing damage, no matter how gentle or naturalistic your methods. This school of ABA teaches “quiet hands” and “sit still” and “make eye contact.” It teaches autistic children to hide their pain and their needs, to obey without question, and to suppress their most natural ways of interacting with the world. By extension, it teaches autistic people to hate themselves. The self-hate may not surface until later, but it is an inevitable result of being taught that the way you do things naturally is always wrong.
2) Improvements on the Traditional Model: Autism is not the Enemy
Some more modern schools have moved beyond this, at least in part. They understand the basics of sensory needs. They argue for kids to get accommodations, allow them to stim, accept multiple forms of communication, and don’t focus primarily on suppressing autistic behavior. They do still, however, tend to set goals through a neurotypical lens, which often involves a lot of incorrect assumptions about how the autistic mind works. Ultimately, much of their work is counter-productive, although a lot less unpleasant for the child than the previous version.
An example of this is when a therapist sets the goal of having a child look up and orient towards the speaker when her name is called, so that she will attend to safety instructions like being called back before she runs into the street. The underlying goal isn’t a bad one– get the child attend to stimuli that are likely to be important for their safety– but the notion that an autistic child can reliably indicate attention by looking at the speaker needs to be re-examined.
Another example: a reasonable educational goal is set for the child, like being able to do arithmetic. But the therapist assumes that wrong answers result from a failure to understand, not from dyspraxia that leads the child to point at the wrong answer unintentionally. There are many self-reports from autistic people explaining that this is a common occurrence for them, but researchers have failed to take this into account when developing treatment protocols. The result is a lot of time wasted attempting to “teach” a child information they already know, a lot of frustration and anxiety on the part of the child, and a serious underestimation of the child’s intelligence or academic potential.
Too often, ABA practitioners in this category work at getting kids to do the wrong things for the right reasons, taking time and energy away from more important learning. Unfortunately, the vast majority of research into autism “interventions” and “treatments” is based on assumptions like these, if not the even worse traditional beliefs mentioned above.
3) Getting It Right: Supporting the Autistic Experience
The rare wonderful ABA folks have a philosophy more like that of most occupational therapists. They believe that their primary job is to give the child a set of tools that are useful to that child — not to make them less autistic, but to help them to function better as an autistic person. They want the child to feel empowered and competent. They use the methods of ABA to teach communication skills, self-care skills, and skills that increase a child’s independence rather than stifling it. They also focus a lot on adapting the behavior of other family members to be more supportive toward the autistic child.
A therapist in one such program said to me that the philosophy behind their sessions is “form follows function.” This means that they use, in my opinion, the appropriate interpretation of the “Analysis” part of ABA — they try to figure out what the child needs or is trying to accomplish, and then seek to teach the child an effective and reliable way of reaching that goal (a way, additionally, that doesn’t involve anyone– including the child– getting hurt or being made miserable). This same therapist told me that the very first thing they teach any child is how to ask for a break– “and then, if the kid wants to take a break 200 times in a 2 hour session, that’s fine, we let him take all those breaks. We’ll work on the rest later. The point is, he’s learned something useful.”
I’m not saying that these people are flawless– they do fall prey to some of the same erroneous assumptions about what it means for an autistic child to show progress– but most of what they do helps more than it hurts. Sadly, they are in the minority.
It can, of course, be difficult to define the line between helping a person grow and changing who they are. When are you helping a child by having high expectations for them versus pushing them to do something they truly can’t manage? How do you balance respecting a child’s needs and preferences with teaching them the necessary amount of patience, self-control, ability to face disappointment, and so on? These questions are much harder to answer empirically, and honestly, we’ll probably never have the perfect answer, especially since it’s bound to be different for every individual. But we do know that a child has to feel safe before they can focus on learning. That a child who is in pain (physical or emotional) is unable to perform at their best. And that every person, regardless of ability, needs to feel respected and heard.
Source list 2 (in no particular order):
- “The major false premise, common to much autism research, is that autism is a “disorder” rather than a difference. When a researcher starts from that premise, they will be looking for “causes” of the “defect” rather than for an understanding of the source, function, and consequences of the difference.” – This article also notes some other specific flaws in most autism research. http://www.mfw.us/blog/2014/03/09/cart-before-the-horse-research-multisensory-integration-in-autism/#sthash.DHlX7js7.dpuf
– “I was treated with mostly kindness, but the therapists could not see beyond their training. I learn quickly, but am not able to reply with words that sound right to another.
Worry becomes everyone’s focus.
Real learning happens when no one notices.
The goals waste away.
Tender feelings do not hurt, but are not helpful because they cannot soothe wounds of being constantly underestimated.” – 12-year-old Emma Zurcher-Long, on her experience of ABA therapy at ages 2 & 3. http://emmashopebook.com/2014/02/07/no-aba/
– “A small but growing number of multidisciplinary researchers are challenging the autistic stereotype and finding, in many cases, that our knowledge of autism has been built upon unsupportable ideas about normality, intelligence, sociality, eye contact, empathy, language development, child development, and communication.” Excellent reading here, with a lot of scientific references. Thoroughly debunks several common assumptions, including the idea that eye contact equals attention, even in neurotypicals. http://karlamclaren.com/research-based-approaches-to-autistic-ways-of-learning/
– “Taking away things like hand flapping or spinning is not done to help the child. It is done because the people around the child are uncomfortable with or embarrassed by those behaviors. But those are coping behaviors for the child. It is very important to question why a child engages in the behaviors they do. It is very wrong to seek to train away those behaviors without understanding that they are the child’s means of self-regulation. When considering whether you have made a wise choice in what therapy you are providing your child or not, you want to always remember a few cardinal rules: behavior is communication and/or a means of self-regulation. Communication is more important than speech. Human connection is more important than forced eye contact. Trust is easy to shatter and painfully difficult to re-build. It is more important for a child to be comfortable and functional than to “look normal.”
Work on things like anxiety and sensory issues first. Work on getting better sleep (both you and your child). Things like eye contact can come later, much later, and only if your child is comfortable with them. There are work-arounds. Lots of people fake eye contact. Lots of people have good lives with minimal or no eye contact. But forcing a child to do something that is deeply painful and distressing for no reason other than to make them look more normal is not just unnecessary, it is cruel.” This source was also quoted in a previous section. https://unstrangemind.wordpress.com/2014/10/07/aba/
– “Being declared indistinguishable from peers does not do any favors to the child, except maybe ending the hours and hours of discrete trial training. Being academically “on track” does not magically confer socialization or executive function abilities….
This also essentially punishes Autistics for learning coping skills. They might get you through the lower grades, maybe even into high school or young adulthood if circumstances line up, but there will come a time when scripts and constant vigilance are not enough. There is always too much to process, too much to juggle, more and more things to do and ever increasing demands. Putting a veneer of “indistinguishability” on top of that is just setting us up for burnout. “ – This is part of a wonderful series of posts about the downsides of “indistinguishability.” http://timetolisten.blogspot.com/2013/09/indistinguishable-from-peers.html
– “...even when people know eye contact can be painful and that we will not pick up much social information, we are STILL expected to perform the feat for the social comfort of others.” – Also quoted earlier. http://ollibean.com/2014/10/28/autism-and-eye-contact/#sthash.iSXIsfKU.dpuf”
– “The case I want to make against “quiet hands” is that in addition to being emotionally damaging, it’s cognitively counterproductive. Think back to the experiment where the people who were told to resist eating chocolate gave up more easily on solving puzzles. Substitute stimming for chocolate and learning long division for solving puzzles. Add in the fact that autistic people have impaired executive function to begin with, making inhibition of actions more challenging, and you can see why asking a child to resist stimming is counterproductive if you’d also like them to learn a new skill.” Excellent and clear explanation, with references. http://musingsofanaspie.com/2013/06/18/a-cognitive-defense-of-stimming-or-why-quiet-hands-makes-math-harder/
– “I think “compliance” is a lazy shortcut term for something more important or more measurable or more relevant. “He was compliant today.” What does that mean? That he did what he was told to do because his spirit was broken and he went through the motions? That she did what she was asked to do because she understood why she needed to do something? That he was guided toward possible options and that staff and support folks helped him reach decent decisions about what to do or not to do?” http://blog.dadsofdisability.com/compliance/#.U2qlX_ldWX9
– “I need to silence my most reliable way of gathering, processing, and expressing information, I need to put more effort into controlling and deadening and reducing and removing myself second-by-second than you could ever even conceive, I need to have quiet hands, because until I move 97% of the way in your direction you can’t even see that’s there’s a 3% for you to move towards me.” Quoted many times before. http://juststimming.wordpress.com/2011/10/05/quiet-hands/
– ““It frustrates me to look back at how my ABA teachers drilled me endlessly in basic skills only to say it wasn’t mastered because I had inaccurate pointing. I knew everything so easily. I was bored to tears but my apraxic hands would go to the wrong card so they thought I didn’t know “book” or “tree”. I did it over and over. It was the worst. The assumption that people don’t understand if they reply incorrectly is a huge misconception. ABA is built on this erroneous premise.”” – Ido Kedar, quoted at http://emmashopebook.com/2013/11/05/more-on-aba/
[Read the Introduction here]
SOMETHING IMPORTANT IS MISSING
ABA-based therapies are currently considered the only scientifically validated “treatment” for autism in the United States. Let me defer, for the moment, discussing what is meant by “treatment” and whether or not that is an appropriate word to use.
Any medical or therapeutic treatment, particularly one used on children, should be subject to rigorous safety testing by independent researchers. To the best of my knowledge, no such research has been done. By this, I mean research that actively looks for any downsides to ABA, and follows clients up in a long-term study with a control group.
I have come across many possible side-effects to ABA (and related therapies/teaching methods), mostly reported by autistic adults and autism parents, and occasionally by professionals. Some may be evident immediately, but others are only noted many years later (perhaps the client is aware of them earlier but is unable to report until much later due to delayed language skills or the difficulty many autistic people have in recognizing and reporting emotional experiences. Also, sometimes the client has to reverse habits learned in ABA therapy before realizing how detrimental they were.)
Here is an incomplete list:
acute emotional distress; decreased self-esteem, self-hatred; depression; anxiety (particularly when being observed by others); suicidal ideation; post-traumatic stress disorder; loss of trust in others, including primary caregivers; increased aggression; reduction in or loss of “savant” skills; inability to respond appropriately to sexual assault, pressure, or predation (attributed to compliance training); difficulty judging or expressing one’s own preferences; and reduced independence. (See sources list 1).
Additionally, any treatment should be held to a set of ethical standards, established by a central organization and required by all practitioners. As autism mother and professional writer Ariane Zurcher notes, people don’t usually have reason to question whether established medical treatments (she uses the example of chemotherapy for cancer) are ethical or not. But most autistic communities have serious concerns about the ethics of ABA.
ABA practices are not standardized, are not regulated, and are open to a large amount of parental influence. This is a problem because most parents of autistic children, while in many ways the ultimate experts on their own children, are not experts on autism in certain crucial ways and make certain assumptions from their own neurotypical perspective that may seem like common sense but ultimately not be what their child needs (currently, most ABA folks also make those incorrect assumptions, but I will address that point later).
To draw a parallel, we expect a doctor to listen to a mother’s description of her child’s symptoms, but we hope that the doctor wouldn’t prescribe an inappropriate medication or dangerous procedure simply because the parents want it. And while parents may have to intervene at times in their child’s education, we don’t expect that a father should be allowed to rewrite exams or insist that the teacher add new material to the curriculum! But most ABA programs are largely centered around the parents’ goals for the child, and those goals, which are usually based on expectations for a typically developing child, are not always healthy or safe for an autistic child. There needs to be some oversight here, based (again) on thorough research.
So this is my first concern about ABA therapies: the methods are not safety-tested, and practitioners are not held to established ethical standards. Would you give your child any other “treatment” that didn’t fit those criteria?
Sources list 1 (very incomplete, in no particular order, and NOT EASY TO READ, i.e. lots of trigger warnings):
– Oliver Sacks, in “The Man Who Mistook his Wife For a Hat,” recounts an instance of profoundly autistic adult brothers who were mathematical savants until undergoing intensive speech therapy.
– “You’ve heard that eye contact is about sharing and social referencing and subtle messages and cues being sent among communicative partners. That’s not what this is at all! This is the sledgehammer. This is the safeword, if you will, the “this stops now it has to it has to it has to make it stop nownownownownow no matter what”.
“Where did I get this idea? Therapy. That’s where… My brain knows that for most people a straight in the eyes stare is not the signal for “something needs to stop right. now.” but it isn’t that easy. One of the deepest conditioned things I have is “eye contact is giving in. If you do that, the bad will stop.” This is irrational and untrue and the world doesn’t work that way. It’s deep, though, as the first and most consistent of the wrestling matches I had with adults as a small child.” – http://timetolisten.blogspot.com/2014/03/conditioned-eye-contact.html
– “Her internal model of friends is “I do what they tell me to do”. No one has to be nice to her, or put up with her, so she has to do what they ask. “No” isn’t an option… People ask, and she does. And when people don’t ask? She doesn’t know what to do. The guessing is impossible. Not knowing what they want is oh so anxiety provoking that she cannot breathe for hyperventilation. They can tell her they don’t want anything, but that’s never true. People always want something and the guessing game is not a thing she can do anymore.
People say they don’t want anything. They always want something. Stand up, sit down, touch nose, good girl. Do my homework for me. Social media crisis this. Can you cover another shift at work? These, she understands. “Just be my friend” doesn’t mean anything.” – http://timetolisten.blogspot.com/2013/09/the-cost-of-indistinguishability-is.html
– “…what looks like progress is happening at the expense of the child’s sense of self, comfort, feelings of safety, ability to love who they are, stress levels, and more. The outward appearance is of improvement, but with classic ABA therapy, that outward improvement is married to a dramatic increase in internal anxiety and suffering.” – https://unstrangemind.wordpress.com/2014/10/07/aba/
– “Children like yours — children like I was — are taught to be compliant. That’s what 90% of autism therapy looks like to me: compliance training. They become hungry for those words of praise, those “good girls,” the M&Ms or stickers or other tokens you use to reward them. They learn quickly that when they do what you want them to do, they are a “good girl” and when they try to do what they want, they are a “bad girl.” I was not allowed to refuse to hug the man who sexually molested me for a decade of my childhood because I might “hurt his feelings.” That’s pretty major, but there were millions of minor experiences along the way, chipping off my understanding of myself as something owned by myself and not something owed to the world around me.” – http://unstrangemind.wordpress.com/2013/01/27/no-you-dont/
– “People worry a lot about their “violent” Autistic children as they get bigger and stronger and harder to control. But far too often, the “violence” is stirred up by years of very frustrating therapy…. There’s only so long that a person can take being pushed into sobbing meltdowns of frustration before they are willing to do whatever it takes to get the torment to stop. It is not only heart-breakingly cruel to treat a child this way, it is grossly irresponsible. Therapy like this creates problems. The best it will produce is a child trained to do things that make no sense in order to avoid distress and get rewards. The worst it will produce is a child that bites, kicks, hits . . . and gets bigger and stronger along with becoming less and less controllable. This therapy is not designed to raise a child who feels safe and comfortable with who they are, who feels safe to express their individuality, who is mentored in growing and developing into the best person they can be, expressing their true nature in ways others can come to connect with. ” – http://unstrangemind.wordpress.com/2014/11/07/what-does-helpful-vs-harmful-therapy-look-like/
[This post continues in part 2]