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We Need to Talk About Appropriate Language

September 7, 2016 1 comment

This paragraph was originally at the end of the post, but I think I should start with it instead. The purpose of this essay isn’t to “dump on” ABA people, teachers, or anyone else who has a disabled child in their lives. I’ve made dozens of mistakes I know about, and even more that I don’t, and I suspect I will continue to make mistakes. That’s why I want to remind you all to think critically about what you do and say and how you do and say it. Think about the words you use and the messages you give without words. Try to imagine the perspective of your students or clients or children, and if you can’t imagine it, read more stuff written by adults with disabilities.

***

It was a minor thing that got me thinking about language. I was watching a middle-school level nutrition lesson for a profoundly autistic boy, and overall it was a good lesson. But it contained the following line: “I am lactose intolerant, so I should stay away from dairy.” Although I  understand figures of speech very easily, I also often notice when the logical meaning of words is not the same as the intended meaning. So I thought, “No, he doesn’t need to ‘stay away from’ dairy, he needs to not eat it.”  There’s a difference. This isn’t a food he has a contact allergy to; it’s just something that will upset his digestion.

I’m sure this strikes most people as a ridiculously small thing to fuss over. But so often, even non-autistic children misunderstand what adults tell them. Most of us can remember being unreasonably afraid of something– or hoping for something impossible — because an adult said something we misinterpreted, took too literally, or didn’t realize was a joke. Sometimes we hold these misconceptions for years. For an autistic child, who tends to take language very literally, this probably happens far more often. Even the phrase I just used — to “take language” a certain way — can be confusing, as it uses the verb “take” in a sense that only exists in idioms (I am indebted to Judy Endow’s book “Make Lemonade” for this particular example, although in her case she was confused by the phrase “take care”). Often, the context corrects the confusion, and academic misunderstandings are rarely critical. But when a child is learning about their own healthcare, the language must be as accurate and precise as possible.

***

I’m also not sure how I feel about lessons given in the first person. When a client or student reads a social story designed to give instructions, it makes sense to think this way, as in: “I will put on my shoes before going outside,” or “When I have a question for the teacher, I raise my hand and wait until the teacher says my name.” Non-autistic people also use these kind of internal instructions. Examples include internal “pep talks,” meditation mantras, and self-reminders during a busy day (e.g. reciting “I have to go to the bank and then buy cat food”).

But it often feels weird to me when teachers or therapists write and read these sorts of instructions. Perhaps some of my objection comes from the fact that these writings often make statements about the client/student’s feelings or thoughts in a way that an outside observer cannot possibly know. Or they try to tell the student/client how to feel.

I ran into trouble with this recently. A preteen client was having difficulty waiting in line for the slide at the playground. If other children were ahead of him, he would often shove them roughly aside, and then had to be removed from the situation. Having witnessed this several times, I developed some thoughts about why this particular circumstance was so hard for him.

First, the playground we always went to was usually quiet, so there was rarely a need to wait for the slide. He didn’t expect the waiting, so he didn’t handle it well. The other problem was a conflict with another social rule he knew: saying “excuse me” when he needed to walk past someone.  This skill had been very heavily reinforced at home, where he otherwise tended to crash into people while running around the house. Generally, when he said “excuse me,” someone would step aside and let him pass. At the slide, however, he would say “excuse me” to the child in front of him, but they would not let him pass, and he would become upset. I suspect that he was angry: as far as he was concerned, he was doing the right thing, and it was the other kids who weren’t following the rules.

I brought these points up to his ABA team and suggested that he needed a social script about waiting for the slide (and then had to explain that a “social script” wasn’t necessarily a verbal script but could also mean an internal set of rules for handling a situation). I was happy to see, next time I arrived, that they had put together a little social story for him. I half-listened to them read it to him before one playground trip, and planned to read it to him myself next time. When I did, however, I discovered a few problems. The script went something like this:

“My name is Joshua. I love to go to the playground and go down the slide. The slide is my favorite thing at the playground. Sometimes I have to wait for my turn at the slide. Sometimes there are other kids waiting ahead of me, and they won’t let me pass them. That is ok. It’s important to wait for my turn even if I am excited. I will wait for my turn nicely. Here are some things I can do while I wait:

I can have quiet hands

I can count to 100

I can leave the line and come back later

When I wait nicely, my mommy and daddy will be so happy. I like making mommy and daddy happy. The other kids will be happy, and I will be happy, too! I am a big boy who knows how to wait for the slide!”

Yeesh. “Quiet hands” is the first problem, but I won’t dwell on it, as others have critiqued it far better than I can (and at least in this family I’ve only ever heard it as a response to hitting or pushing people). The counting idea is an excellent one. But when I got to the last paragraph, I couldn’t bring myself to read past the first sentence. What is this, “Brave New World”? It’s one thing to point out that waiting nicely pleases people; it’s another thing entirely to tell someone how they feel about this. And “I’m a big boy” — Seriously?? He may have a moderate-to-severe cognitive disability, but he’s still almost 13, not almost 3. This kind of language is downright insulting.

When his BI (ABA person) first read it to him, I didn’t pay much attention to the words, but was bothered by the sing-songy overly cheerful voice she used– again, appropriate only for an infant or very young child. I should mention that, on the whole, I love his ABA team. They are flexible, patient, focused largely on practical skills, and generally sensible. He adores them, adores his sessions, and is learning skills that make his life easier and more independent. They are also very fond of the term “age appropriate.” They want him to have “age appropriate” self-care skills, do “age appropriate” chores around the home, and be able to participate in “age appropriate” social activities (he is a very social person, and loves to be included in games and outings, so I’m not against this goal, although I do point out that he also has the right to play in a more “babyish” way when he wants to). They even talk about getting the rest of the family to treat him more like someone his age!

So, with all this focus on age appropriate everything, how about using age appropriate language and tone of voice with him? I use simple sentences and a limited vocabulary, and sometimes I use funny voices for his amusement, but I sure hope I never talk to him like he’s in preschool. So I go off-script and finish his social story with “When you wait nicely, we’ll all be proud of you, and you can be proud of yourself.” And I say it just like I’m talking to any other person.

I have no way of knowing whether this particular client is sensitive to these nuances of language and tone. For all I know, he may be perfectly ok with it. But I’ve heard from enough adults with developmental and intellectual disabilities to know that some disabled kids will definitely notice being talked down to. And that means it’s not ok to do it to anyone.

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It’s a Dog’s World

Here’s an extended metaphor. Imagine a world where the only possible pet is a dog. Dogs are everywhere, and people know a lot about them, but they’ve never heard of any other kind of pet.

Imagine a family going out and getting a puppy, a cute little furry puppy to love and care for and play with and take on long walks. But they soon begin to have concerns that something is wrong with their pet. He is soft and cuddly and adorable, but…

Well, he can’t seem to learn how to walk on a leash, or sit on command, or fetch. His tail is much too long, so long it drags on the ground at times, and he doesn’t wag. They thought he was wagging once or twice, but then he growled and snapped when they tried to pet him. He’s usually affectionate, but  doesn’t like having his belly rubbed, and can even become violent when his family tries to scratch his tummy. They worry about his abnormally small size and his odd sleep schedule, and about how he stretches in ways that can’t possibly be healthy. He only picks at his food, won’t chew bones, and spends a huge amount of time licking his own fur instead. He frequently manages to get onto counters and shelves that a dog shouldn’t be able to get up to, and they are terrified he will fall and get injured. He doesn’t play well with other dogs,and is easily frightened by all sorts of unexpected things. Sadly, he’s never barked, not even once. Instead, he makes odd squeaks and growling noises.

They talk to their friends, who agree that they’ve never seen a dog act like this before. So they take him to the vet.

The vet agrees that there is something wrong. She’s seen dogs like this before, she says, and while there are some things that can help, she is afraid their pet may never be quite normal. She recommends certain foods, and intensive training in obedience school to help the puppy learn how to take better walks and tolerate tummy-rubs. They should spend more time at the park, where he can learn to be less frightened of the bigger dogs. He might never bark, she says, but he’ll probably find other ways to express when he is excited or needs to go out. They should discourage him from making those strange growling sounds, as they will confuse other people and dogs into thinking their puppy is aggressive. She knows it’s hard to have all those other families staring at their weird pet and telling them that they’ve done a lousy job training him. She assures them it isn’t their fault he turned out this way. In terms of appearance, it might help to surgically remove part of his tail, and have him wear a body brace to keep his back from sagging and bending too much.

Now, those of you from planet Earth may have figured it out by now. The problem with this dog is that it isn’t a dog at all– it’s a cat! But these people– the family, their friends, the vet, the trainers– don’t know anything about cats. They only know about dogs.

So what can this family do? Well, they can embark on the program recommended by the vet, and try to make their cat as dog-like as possible. Or they can adapt to life with a cat. They can learn that his “wagging” is actually a sign of unhappiness, that his belly is too sensitive to be petted, and that his strange growling noise– purring!– means that he is content. It’s not going to be easy– they will be the only family on the block who can’t put things on a counter or shelf to keep them out of reach, and they certainly can’t let him off his leash at anyone else’s house. Other people and dogs are often going to be frightened by his purring, assuming he’s growling at them. He doesn’t enjoy many of the activities most dogs do– swimming and frisbee and chew toys– and they worry that he will be lonely and bored much of the time. And what if he gets out of his harness and runs away? Whoever finds him will think he’s a wild animal when he doesn’t respond to “sit” and “stay,” and he might get treated as a stray even though he wears a collar. No matter how dedicated his family is to making their life cat-friendly, there will be some things that will simply never occur to them, like catnip mice and litter boxes.

It isn’t going to be easy trying to change so many things on their cat’s behalf. But the cat is never going to become a dog, either. He may learn to play with dogs, and even enjoy it, and eat their food and walk on a leash and generally fit in well enough for most people to assume he’s just an odd breed. Or he may not. Perhaps only a few people will ever think that it’s ok for him to look and act completely like a cat. But we can dream of a future where people know enough about cats to keep them happy and healthy, even in a dog’s world.

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.

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.

***

Thoughts?

Suggested Questionnaire for Healthcare and Related Professionals – please share widely

October 27, 2014 7 comments

[Update!! Those who want a tool similar to this can download one for free from http://autismandhealth.org/%5D

I have heard many complaints from autistic people and other people with disabilities about their struggles in communicating with healthcare professionals, etc.. I propose a simple questionnaire for professionals to use. These would be standard intake questions, and the answers would be put at the front of the patient/client’s chart.

If you like this idea, please take this quick online survey!!!

If I get enough positive feedback, I will try to make this tool become a reality. I don’t know how, but I will try. Please help me spread the word.

https://docs.google.com/forms/d/1JB2s5dQxtZNLxP7CwbPFtQzU4-3QT6htxjYNhNpIssA/viewform

(If you have trouble wti the survey, you can also comment here on facebook: https://www.facebook.com/notes/open-discussion-on-autism/suggested-questionnaire-for-healthcare-and-related-professionals/789224341139804)

Dear “Autism Parents,” We Don’t Want To Be Cured

If you want your autistic children to grow up and be happy, then you need to start listening to them, and to the autistic community as well. When you ignore autistic adults and our opinions, you are adding to the system of oppression that your child is going to face for the rest of their life.

via Dear "Autism Parents," We Don't Want To Be Cured.

Easier Said Than Done – Rules for Interacting with Children (and Adults!) with Disabilities

When I first met Tangles, as with every new disabled child I meet (really, I suppose it should be every child, period!), I made myself the following list of promises:

1) I will always speak to her as though she can understand me, no matter how little evidence I have to support that hypothesis. Additionally, I will speak to her with respect and courtesy.

2) I will always act as though she can understand anything I say in her presence.

Granted, I’m lousy at this one, in the sense that I tend to forget myself and swear around kids, or talk to their parents about adult topics that may not be appropriate. I may also talk about the child in front of them, but never, ever, no matter what, to say something negative or complain about them. Questions, praise, and purely factual stuff only, and even then, I probably do far too much of it.

Don’t underestimate the importance of this rule. Children already worry enough and blame themselves enough. Remember how you felt realizing that you made your mother cry or caused your folks to fight? Remember how much the things they said about you in moments of anger or frustration cut to your heart? If you ever doubt that disabled children have these same feelings, go read this. Now imagine, on top of that, not being able to apologize, to ask for reassurance, or even to remind your dad that you love him. Think about what growing up that way could do to a child’s sense of self-worth. In the film “Wretches and Jabberers,” Tracey, who first learned to communicate by typing in his 30s, recalls that the first thing he typed was to tell his mother that he loved her. She cried. When I saw that part of the film, I cried too.

3) If she does not do what I ask her to, I will assume that she either cannot or has a reason why she does not want to (and that this reason is valid, whether or not I understand or agree with it.) While I may have to insist that she does something she doesn’t like, I will never accuse her, even in my mind, of being “badly behaved,” “non-compliant,” “stubborn,” “defiant,” “oppositional,” or “manipulative.”

I’ve known willful children– and I think, “good– they will grow up to be strong-minded, assertive adults.” All children have some inherent limitations in their abilities to be patient and thoughtful, due both to their inexperience with the world and to the fact that their brains are not yet fully developed. And all children are manipulative, for the simple reason that they have far less power than the adults around them, and so have very limited ways to gain access to the things they want and need. I know that children can acquire some very bad habits– such as selfishness, excessive impatience, and the tendency to whine or throw tantrums. I know too that bad habits in children are generally the result of their caregivers responding incorrectly to their wants and needs, including the need for limits, rules, and structure. Some children, more than others, seem to enjoy getting strong emotional reactions from their caregivers– including reactions like shock and yelling– but those needs for emotional input can be acknowledged and met in positive ways, such as giving the child more stimulating experiences.

4) I will not force her to do anything, or do anything to her, without good reason. Additionally, when I need to do something to her or make her do something, I will explain both what it is and my reason for insisting on it.

***

I think it’s a good list of rules. As I was about to find out, though, those rules are easier to write than to follow.

And as it has gotten to be 1:30 AM, I’ll have to continue this narrative tomorrow.