No lesson here, just reminiscing. I have a client, age 13, with moderate-to-severe developmental disabilities. Very social, loves music, loves simple word games such as being asked what sound various animals make, or asking me my favorite color, etc.. I generally see her for 3-5 hours a week, and have done so for the past two years. And just the other day, I had a very disquieting thought. It occurred to me, suddenly, that I probably understand more of what she says than anyone else in her life. Which is both unacceptable and understandable.
You see, in addition to assorted other disabilities and delays, she has a very profound speech impediment. She sometimes uses an iPad to communicate, but not often, and not with much fluency. She prefers speaking verbally. And, provided I pay very close attention and have had enough coffee, I can understand perhaps 75% of what she says. I don’t think anyone else in her life gets more than 50%. Teachers and therapists aren’t in her life long enough to learn. Her parents, in addition to being very busy people, are not native English speakers. They speak English quite fluently, but when you’re trying to decode speech based on minimal clues, there’s no substitute for having grown up with the language.
It’s not just the fact that her pronunciation is hard to understand. There’s also her unique patterns of speaking. She tends to drop consonant sounds, even the few she’s capable of making when she really tries. She drops words out of her phrases, syllables out of her words. And she speaks in the way people jot down notes to themselves, where a few key words stand for entire thoughts or requests. This is where it’s necessary to know her very well, because even if she pronounced those words perfectly, much of her speech would still be utterly mysterious to someone who doesn’t know what she’s referencing. There’s often quite a lot of guesswork even for someone who does know her.
If she comes to me and says “bus” (a word she can produce reasonably intelligibly), she might mean “I want you to make the sound of a bus” or she might mean “I want you to sing Wheels on the Bus.” Even if she says “I want bus,” I know she isn’t asking to ride on a bus. Sometimes for the song, she’ll say “duh bus” (the bus) or add the “round and round” gesture used in the song. Her BIs are working fairly intensively on getting her to give more information in her speech, so now sometimes she’ll say “sound bus” when she wants the sound. And if we’re already playing “make sounds of things,” it’s a good bet she wants a bus noise. She’s also pretty good with simple yes/no questions, so I can just ask. This is pretty simple. And many of her other shortenings are relatively easy to pick up, too: “A B song” is the alphabet song, “Gaga face” is Lady Gaga’s “Poker Face,” and what sounds like “Fie uh wayn” is Adele’s “Set Fire to the Rain.” “Uh dime it?” means “What time is it?” Some of her abbreviations make a lot of sense, especially for someone who struggles with pronunciation– cutting out articles and other words that aren’t as important to the meaning of what she’s saying. Others are less sensible and actually interfere with the meaning of what she’s saying. I don’t know if those happen because she doesn’t want to try and say certain words, or if there’s an actual cognitive disability in terms of her ability to recognize or remember or think in full sentences. Probably some of both.
Sometimes figuring out the reference is pretty hard. I often run though handfuls of guesses before hitting on the right one, and then I have to remember what that particular phrase means again in the future. Not as easy as it sounds, especially when many of those phrases are very similar, or sound very different from their correct pronunciations. When she asks “How was your day?” it often comes out sounding like “Wuh woo they?” I never would have figured out what it meant on my own; the BI who taught her that question filled me in on what she was saying, and I had to hear it a couple of times before it stuck in my mind. It doesn’t help that she sometimes ask “What’s today?” (as in, what day of the week is it), and it sounds pretty much the same. The way she says “color” is identical to how she says “flavor” (and I have no idea how to write it!). “White” and “grey” can both come out sounding like “why.” Something that sounded like a cross between “hammock” and “omelet” turned out to be a request for “Old MacDonald Had a Farm.” So I have to guess at what sounds she is trying to produce, what word or phrase or part thereof those sounds are meant to represent, AND what she’s trying to convey by using those particular words.
Sometimes she finds a way to give me clues, sometimes not. Once, she asked over and over for “ghee ew up,” to my utter confusion. My brain started trying out possibilities: Giddy-up? Something about horses? Do I know a song about horses that I’ve sung to her before? (Many of her requests are for songs, which at least gives me some idea where to start). Or maybe it’s something about getting up. Is she asking me to help her get up? “Give it up,” perhaps. Is that a song? It might be a pop song I don’t know; she listens to a lot of pop music. Maybe I’m assuming word breaks in the wrong places. The last two syllables could be “Europe.” All along, of course, I’m saying things like “I’m sorry, I don’t understand, can you tell me another way? What is it?”
Finally she added a gesture– clasping her hands and swinging them back and forth. She had to do that a few times before I finally was able to make the mental leap to a song we’d sung together a few weeks prior. She was asking for “London Bridge is Falling Down.” Really. Here’s the logic: her favorite line in the song is “Take the key and lock her up, my fair lady.” (And sometimes, when I’m feeling energetic, I hold hands with her on that line and swing our hands back and forth.) So she was quoting her favorite line, but omitting most of the words, leaving her with the phrase “key her up,” which I was only able to figure out once I knew what she was asking in the first place. Sometimes at this job I feel a bit like a cryptographer. Or a linguistic anthropologist.
Another time, she said what sounded like “WUH wiggen.” No clue. She said it a few more times, but I was drawing a blank. Sadly, I can’t get her to add information by asking things like “What is it?” or “Can you tell me more about it?” or “Can you show me on your iPad?” but experience has taught me that sometimes she can answer certain yes/no questions that help me narrow it down.
(And rarely, wonderfully, if it’s a song, she’ll try and sing it for me. Her singing is beautiful, but not much more comprehensible than her speech. She only ever pronounces the final syllable of any line, the rest being filled in with moderately accurate vowel sounds with “w” substituted for the consonants. And while she can hold a note pretty well if she’s singing along to the radio or YouTube, when singing alone she’s very quiet, and the melody fades the same way the lyrics do, only bubbling to the surface briefly in places. Still, I love her singing, and there’s always a special thrill when she hits a line in the chorus and I finally recognize what she’s going for and start singing it with her and her face lights up with a smile about a mile wide.)
But this wasn’t one of those times.
“I don’t understand. Is that a person?” I ask. Could she have a friend at school named Mulligan or Brannigan or something like that?
“WUH wiggen,” she repeats.
She says it again, “WUH wiggen.” I admire her persistence. And sometimes, if she says something enough times, my brain will finally match her sounds up to actual words. The cadence helps a lot. But sometimes, we both just end up frustrated. Sometimes I work to get her attention onto something else instead, if I really don’t have a clue.
“I’m sorry, I don’t know it. Pick something else.”
“WUH wiggen.” She’s starting to look annoyed, and I can’t blame her. Could it be a game?… An animal?
“Is it a song?”
“Yeah.” Finally, a clue! But I can’t think of any song titles that match up. It could be anything from a nursery rhyme to a new release. The odds are against me, but serendipity is on my side. I somehow finally parse the words as “love again,” recognize them as belonging to the line “we can learn to love again,” and cross my fingers.
“Just Give Me a Reason? Is that what you want me to sing?” And finally, there’s the smile. Phew! I think she heaves a sigh of relief along with me. I laugh at the utter absurdity of the mental journey we’ve both just taken in order to reach common ground. And yeah, I’m feeling pretty good about myself for figuring that one out.
By the way, the song is completely out of my range and I only know about half the lyrics. Ordinarily, I wouldn’t even try to sing it in the shower, much less where anyone can hear me. But I know that exchange was hard work for her as well as for me. I know it’s stressful for her to try over and over to make someone understand, with no guarantee of success. In short, she’s earned it. So I give it my best shot. Top of my lungs. And she smiles and smiles.
I wish more people in her life could decipher her speech too, but how could I ever explain to someone how to decode her communication? How could I teach them to seek out those mental leaps? I don’t even know how I do it, or how to improve. There’s no secret formula for this, no easy answer. I can’t tell you the number of times I’ve failed at understanding her requests. Innumerable apologies for innumerable disappointments. Or the times I’ve figured something out, and then forgotten it on another day.
I’m proud of the times I’ve succeeded. I’m proud of her every time she figures out a way to give me more information. The leap from just saying “bus” to saying “sound bus” is huge. I still don’t know that she could go up to anyone and say “sound bus” and be understood, but it’s definitely progress. I’m sure that eventually she’ll be able to say “make sound of a bus,” and then she’ll be able to request it from anyone, not just the handful of people who know her best. I’m looking forward to that day on her behalf.
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.
[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.
(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)
If you have not done so, please read the introduction to this letter series before continuing: https://restlesshands42.wordpress.com/2014/09/27/an-open-letter-to-aba-folks-intro/
Overview of this letter:
Section 1: About the word “no” and why it is important
Section 2: Observed ABA practices in teaching “no” and why they are problematic
Section 3: Brief recap of section 2
Section 4: Practical suggestions for addressing these issues in ABA sessions
Section 1: About the word “no” and why it is important
“NO.” It’s one of our most powerful words. It’s one of the first words children learn that isn’t a noun. The “No!” phase, also known as the “Terrible Two’s,” is a critical part of human psychological development. In learning to voice a refusal, toddlers learn a huge amount about the world and themselves. They learn that they are individuals, with desires and preferences that are not always the same as those of their caregivers. They learn that they are able to express this difference of opinion in a way that others understand. And most critically they learn that, by voicing this opinion, they sometimes have the ability to change what happens to them. Anyone who’s ever had a toddler knows that sometimes they just say “no” to everything, out of sheer joy at having the power to refuse.
A major feature of autism is a difference in the way autistic and non-autistic people learn to communicate. Autistic children often take much longer than their non-autistic peers to develop speech or other formal communication methods (such as sign-language, PECS, or an electronic device).
Autism therapy often focuses on developing the ability to indicate the word “no,” for good reasons. Children who can’t use some recognizable form of “no” are a lot less happy than those who can tell their caregivers when they dislike something (a food, a place, an activity, etc.). Also, given no other means to express “no,” most children will eventually resort to tantrums or violence as a means of indicating displeasure. This can be physically and emotionally dangerous for both caregiver and child.
Section 2: Observed ABA practices in teaching “no” and why they are problematic
Ok, I assume you didn’t really need any convincing on those points. Now, let’s talk about how ABA teaches “no.” I’d like you to imagine a scenario for me. The vast majority of ABA folks are neurotypical (non-autistic), so I assume none of you have any difficulties with imagining.
Let’s say you’ve moved to another country, one whose language is particularly difficult for you to learn and use. Perhaps it has very different speech sounds than your native language, or another mode of communication entirely (humming through your nose, for example, or doing complicated dance steps).
So someone, or a group of people, is assigned to teach you the basic phrases and words you need to know in this language. The way they decide to teach you “No” (or maybe “stop”) is the following:
You’re stuck in a room with them, and they do things to you that you hate. They pinch you, or drag their nails down a chalkboard, or grab your personal belongings away from you, and they keep doing this until you say “no” to their satisfaction. Even if it’s perfectly clear what you’re trying to say, if you pronounce it just a little bit wrong, or stumble on one of those dance steps, they ignore you until you get it right. Sometimes, you did get it right, but they’re busy making notes or talking to someone else, and you have to do it again.
When you do get it right, they pat you on the head, say “good job,” and let you do something pleasant for a few minutes. Then they start up again. If you put your hands over your ears to block that horrible screeching noise, they hold your hands down. If you try to object in your own language, your objection is ignored. If you get fed up and scream or burst into tears or punch someone (and who wouldn’t, after enough of this?), or even just sit down on the floor and refuse to participate any longer, you get marked down for misbehaving. Maybe, if they’re nice and sensible, they start giving you longer breaks or do something that you don’t hate quite as much. Not much of a consolation, is it?
So maybe, yes, you will learn to say “no” in this new language. Maybe you’ll even learn it faster, in self-defense, than you would have otherwise. But what will you think about the people teaching you? Will you respect them, or just fear them? More importantly, will you believe that they respect you?
In addition, imagine that you’re a child, with little experience of the world. Your own beloved parents tell you that these teachers are here to help you, that you should obey them and try to please them. They call you their “friend,” and unless someone has already explained otherwise, you probably get it into your head that friends are people who are allowed to push you around like this.
(How many of you had a friend or sibling who took advantage of your trust or your admiration when you were little? They made you do something you hated, or got you in trouble for something they did, or tormented you in some other way… Do you remember how much it hurt? I do.)
You might even start thinking there’s something wrong with you. After all, these people are trying to help you, right? They like you and care about you and are experts. So maybe there’s something wrong with YOU for hating the lessons so much. You wonder if you’re too sensitive, too slow a learner, or just a bad person who isn’t worthy of more respect and kindness.
(I’m sure you remember feeling that way sometimes, too).
Or you start thinking it’s ok to make other people miserable, and treat your own friends this way. And then you probably get labeled “aggressive” or “antisocial” and get taken our of you classroom to go have more therapy.
Section 3: Brief recap of section 2
If all that made your head spin, let’s simplify it.
Can ABA therapy teach a kid how to say “no”? Sure.
Is it the fastest way? Maybe.
Is it worth the emotional frustration, destruction of trust, mixed messages about what “teaching” and “helping” and “caring” mean, and possible long-term hostility that can result? You tell me.
Section 4: Practical suggestions for addressing these issues in ABA sessions
OK, criticism only goes so far. I’m not here to make you feel bad; I’m here to help your jobs better. The following are my suggestions for teaching “no” or “stop” via ABA with minimal trauma.
1) Don’t do too much in one day. 1-3 trials per session, no more. Seriously. It may take longer, but it’s worth the wait. You can tell parents they are much less likely to see tantrums, aggression, and meltdowns after sessions if this is done slowly. (Technical note: whatever stimulus you use to elicit a “no” behavior is also going to be perceived as a punishment for whatever the child’s antecedent behavior was. Less technically, if you keep doing something a child hates, they’re going to wonder what they did first to make you do that to them. This can mess up other aspects of the session.)
2) Don’t give praise or additional reinforcement (rewards). The best, in fact the ONLY valid reinforcement for saying “no” is to have the other person respect that request. Don’t say “good job,” because expressing your needs isn’t a job or a task, it’s an essential human activity. Don’t make it less meaningful by assigning it the same status as answering an informational question correctly. I DO encourage you to (sincerely!) apologize to the child for doing something they disliked, or say something like “thank you for letting me know that you want me to stop” (especially if the word is replacing violent behavior!)
3) As soon as the child has a response that is recognizable as “no,” respect it. Respect it whenever possible. If it can’t be respected in a given instance, verbally acknowledge it (“I understand that you don’t like ____” — this also helps clarify the referent of the “no”) and explain why you are not going to stop just yet, or why they have to do the thing they don’t want to despite protesting (you’d do this with a typical child, right? Stop thinking of your clients as that different. They have plenty of typical thoughts and feelings– they just don’t express them the same way others do). You can use “no” as an opportunity for further engagement– offer alternatives for the child to pick (“Would you rather we did ___?”), or bargain with them (e.g. “We can stop in five minutes if you keep working with me right now”). Encourage the family to do this too, especially respecting the use of “no” as much as possible. This is crucial to maintenance. “No” will only become a true part of a child’s functional vocabulary if it is generally effective in eliciting negative reinforcement (i.e., it gets the child the result they are requesting).
4) If you need to shape the physical pronunciation of “no,” “stop,” and similar terms, do that later, separately, and via DTT that is reinforced by something utterly neutral to the situation. Don’t make correct pronunciation a high-stakes task. Again, less technically: if the child needs to say “no,” more clearly, have them practice mimicking your speech (with a bunch of words, ideally), in a game-like setting where they win stickers or candy or tokens for better pronunciation. That lets them practice saying the word more clearly without having to worry that their objections will be ignored if they aren’t performed perfectly.
Dear ABA therapists and technicians,
I’ve met a good number of you over the years. The majority of you love the kids you work with, and want to do well by them. So, for the sake of those children, please listen to some critiques of your methods. Before I start:
1) I do not categorically stand against the study of ABA, or its therapeutic application. I merely have a lot of specific concerns– concerns that come both from my own observations and from listening to dozens of autistic* teens and adults who have experienced these therapies first hand. I’m happy to give you a list of references (a good place to start is: http://jack-not-jacque.tumblr.com/post/48645978990/so-you-want-to-work-with-autistic-kids-primer).
2) I have a degree in Psychology from one of America’s top research institutions, and enough research experience to really understand how much we know– and don’t know!– about ABA and autism, given the studies that have been done. While my undergraduate focus and research were in neuropsychology, I did take classes in behaviorism as well. However, I try to avoid using too much jargon, in part to make these essays accessible to the wider public, and in part because not all programs use the terms exactly the same way.
3) If your response to anything I write is “Well, I/my program would never do THAT,” you are missing the point. Everything I discuss is being done somewhere, by someone, to autistic children and teens. If you agree that ANY of it is problematic, don’t waste your energy worrying what people think of you — worry about the suffering of all the kids who aren’t your clients. If you truly are one of the good ones, get back out there and fight against the rest. Stand up for the rights of those who have less power than you do. Talk to your supervisors and co-workers. Write articles. Bring up these issues whenever you meet autism researchers. Educate your clients’ parents. Send letters to your local editors. Talk to the teachers and counselors and psychiatrists and medical doctors who work with your clients. Help them understand just how badly some of these kids have been traumatized, and what they can do to minimize further damage.
Thank you. Together, we can do what I believe we all want to do: make a significant positive difference in the lives of autistic people.
* While some disability groups prefer person-first language (e.g. “person with autism”), the majority of people I have met who are actually on the spectrum prefer to term “autistic.” The term also encompasses those who have been diagnosed with Aspergers Syndrome and PDD-NOS. In general, whenever speaking to/about an individual, please use the terminology they prefer.
Anyone who thinks that children have no sense of sexuality (of some sort) hasn’t spent much time around children. As any parent discovers pretty quickly, children are curious about their own bodies, other people’s bodies, and the peculiarly appealing secrecy and sensitivity of their genitals.
Typical children learn, at a fairly early age, to keep their private parts more or less private. Children with developmental disabilties often take much longer to learn this– for several reasons, and not just because they take longer to learn a lot of things.
One reason is that they don’t get the same social cues about embarrassment (from other children) that typically developing kids do. There’s an age-range at which typical children obssess intently about potty talk and related topics, learn the rules about keeping certain things private, and then make a very big deal when other children break those rules, thus enforcing a certain behavioral code among their peers. Children with disabilities are often not exposed to this kind of peer group, and may not even get any verbal input from others their own age, and may observe less consistent behavior among the peer group they are in (such as a special education classroom). Lastly, children with disabilties often have a diminished sense of privacy because they need help with personal care (such as bathing and toileting or diaper changing) for much longer than other children, and have to accept this help from a wider variety of people– parents, teachers, therapists, babysitters, and so on.
As a result, one thing I deal with quite often is the issue of children touching their genitals while I am caring for them. Children “play with themselves” in the bath, stick their hands down their pants, and so on. Sometimes the actions are definitely voluntary, sometimes less so. Male children get erections regularly, especially in the bath.
The question for me is how to react in these situations. On the one hand, a certain amount of sexual play is normal and healthy. I don’t want to discourage it or shame children for it– especially, I don’t want to make children feel embarrassed about the fact that I have to see their private parts at times, since this isn’t optional. And I don’t want to teach children that their genitals are dirty or naughty or wrong.
On the other hand, it would not be at all appropriate for me to actively encourage or condone sexual activity of any kind… That would be a form of sexual abuse, because in some way I feel I would be participating in the activity, if only by acknowledging it openly. Some of my clients are at the age where I feel it’s important for them to get some level of sex education, but it’s not my place to give that education unless the parent requests it specifically (maybe not even then– and certainly not without another adult present).
The main thing is that I feel sexual exploration should occur in private… but when do these children have privacy? Most typical children experiment with their genitals in the bath and/or in bed. But the children I work with are bathed by adults. Even the most independent of them generally have me in the same room while they bathe and use the toilet. At night, not all of them sleep alone, and many wear diapers to bed, which I suspect limit self-exploration.
So, my approach is to generally pretend I don’t notice. If the child is in the bath, I will simply look away if they seem interested in exploring their body. I do not wash them or touch them any more than necessary for their safety while they are having an erection or touching their genitals.
If we are in public, I will generally try to intervene as subtly as possible.
(The issue of crotch-grabbing is further confused by the fact that it’s often a sign that a child needs to use the toilet. If I see a child put their hand between their legs, my first response is generally to suggest a potty break.)
For some children, I feel that it is appropriate to offer a quiet, verbal reminder in a neutral (nonjudgmental) tone of voice, such as “Remember, it’s not appropriate to put your hands into your pants in public.” Some kids undress in public as well (or even have clothing fall off!) and then, too, I might say something about keeping private parts covered. A lot of the older kids, at least, know the rules of bodily propriety intellectually, and I don’t want to embarrass them by calling excess attention to what they are doing– which they may be doing absentmindedly, or having forgotten that other people are around, or simply through failure to control their own actions (autistic people, in particular, often express experiencing a wide disconnect between what they intend to do and the actions they find their bodies taking).
Mostly, though, the best trick is to notice when hands are headed in the wrong direction and gently brush them away from going further, or give them something else to do (ask the child to clap or hi-five, hand them something, etc.– without ever mentioning that there was something else you DIDN’T want them doing). Called “redirecting,” this last tactic is also very helpful for helping people break habits (semi-automated activities) like biting their nails or pulling out their hair– you catch them before they are even entirely aware of what they are doing, and get them to do something else instead, and eventually their motor pathways get rewritten. It’s far more effective than drawing someone’s attention to something and telling them NOT to do it– like pointing out that someone shouldn’t scratch an itch, focusing attention on a forbidden action can make someone feel more compelled to do it! (This is, by the way, why nagging is such a terribly ineffective technique).
I think the success of any of these techniques depends on my own ability not to be (or at least not to act) embarrassed. I’m by no means perfect at this, but I’ve made a lot of progress. I think that so many of the mixed feelings many children get about privacy, sexuality, and especially masturbation, stem from their own parents’ discomfort with having to address these topics. Fortunately, regular childcare tends to cure you of two things: the ability to be grossed out easily, and the ability to be easily embarrassed!
One thing I have not dealt with yet (to my knowledge!) is the issue of any of my clients developing a crush on me. I’m open to suggestions on what to do if that situation ever occurs!!