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.
[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)
I am increasingly convinced that we need to come up with a different set of milestones for how less verbally-inclined people learn language. Over and over, I see studies where researchers and educators work very hard (and not always successfully) to get autistic kids to meet the various stages of typical language development… contrasted with numerous stories in which autistic kids, teens, and even adults finally acquire language skills (verbal or written) in unexpected ways after years of ineffective therapy (well-known examples include Carly, Emma, Tito, Larry and Tracy, and more recently Drew, Mike, and Ethan).
Sometimes, the language acquisition is described as “sudden” or “unprompted.” Other times it is the definite result of deliberate struggle. But in either case, it seems clear to me that the professionals invariably mis-evaluate the person’s communication potential because they are looking for the “typical” developmental stages rather than acknowledging that communication and language skills may evolve along a different trajectory in non-neurotypicals.
My experience with nonverbal/preverbal kids also leads me to suspect that at other times, some of the “typical” steps are present, but in a form which often goes unrecognized. Attentiveness, for example, looks different in an autistic child (or adult!) than a neurotypical (NT) one. A NT child who is listening intently to an adult is generally seated, relatively immobile, and making eye contact, whereas an autistic child giving you their full and undivided attention may be pacing, rocking, or engaged in another physical activity… and almost certainly isn’t letting themself get distracted by trying to stare at the speaker’s face!
I recently got to spend a day with Tangles, after not seeing her in quite some time. Her mother says that she’s making a great deal of progress– trying to do more for herself, eating with utensils (albeit not very neatly), and verbalizing a lot more. I asked if there were any particular “homework” (therapies or programs) for me to practice with her, and she laughed and said “just do what you always do with her. It gets her to talk more.”
That surprised me a little bit, because I didn’t realize that what I was doing with her was anything particularly special. But I guess it is. Here’s the thing: I engage with her. I don’t just talk around her or at her or even to her (although I do all those things at times)… I converse with her. Even if her part of the conversation consists entirely of simple syllables like “ha” and “buh” and “foo.” I listen when she says them. I repeat them back to her, sometimes exactly as she said them and sometimes with variations. I get excited when she mimics my variations or comes up with ones of her own. I did this with Fishy too.
I also do the same pattern of interaction in nonverbal ways, especially with Rhythm. We hold conversations in patterns of clapping, stomping, face-making, or touching each other’s hands. We share attention and direct each other’s attention to things– feeling textures or watching patterns or listening to sounds together. These things are interactions, examples of joint attention, and without them, these children have no reason to even TRY communicating with me.
Think of what we do with babies. We crouch down at their level. We engage in things that interest them– playing peek-a-boo, shaking rattles, cooing in baby-talk, giving them the things they want like food, warmth, motion, smiles, bright colors. We connect with them, with what interests them. This is how they get the idea that they can connect with us in return.
Autistic children are all too used to having their interests (if not their needs) ignored by those around them. Parents often speak of their autistic children as being “in their own world”– but all children are. The difference is that there are standardized bridges between the worlds of NT children and adults– storybooks, games, and above all lots of verbal interactions. Many autistic kids, I suspect, would be just as happy as NT ones to share activities and special moments with their parents, but the parents are often oblivious to how to engage in the experiences that excite their kids, and instead resort to trying over and over again to drag autistic kids into activities that they do not enjoy.
Tangles did something special that day, and as usual, I came close to missing it. I had brought her a handful of brightly-colored drinking straws, because she enjoys chewing on plastic. She shook them out of their bag and started chewing one right away, babbling at me happily. I sat with her making sounds for a while. She played with the straws. Then she shoved one of the ones she was holding towards my face. At first I thought she was just playing with it. Then I suddenly realized: she was trying to put it in my mouth. I almost laughed, but then the implication hit me: she was sharing something she liked with me. It was as though I had brought her a box of chocolates and she had realized that the friendly or polite thing to do was to offer me one. So I took the straw in my mouth, said thank you, and chewed on it for a while. And I was incredibly touched, and proud of her.
Yes, the intent to communicate is there. We just have to be careful that we don’t miss it because it doesn’t look exactly the way we expected.
One of the hardest things for me to get used to when working with Rhythm is that he doesn’t like me to talk much. He gets overwhelmed by either processing language or the sound of human voices (especially female/higher pitched voices, it seems), or both. I don’t know the specifics, just that he often gets distraught if I talk to other people too much in his hearing, and even more so if we’re talking about him, even in casual, positive ways.
It is both understandable and odd that I have trouble with this concept.
I am, on the whole, an exceedingly verbal person. I spoke early, often, and at great length– and I still do. I enjoy describing and explaining things, narrating events, and helping people understand complex concepts. While I’m not averse to a comfortable silence, I enjoy talking quite a lot as well.
I also rely heavily on speech for many of the ways in which I show respect to the children I work with, especially nonverbal children. Things I do verbally include:
– Telling them when I am about to do something with or to them, like removing a piece of clothing, so that they can be prepared and have a chance to object.
– Asking them to express consent or preference. (Eg. “Would you like to go outside?” “May I put a jacket on you?” etc.)
– Voicing things they have communicated to me nonverbally, for confirmation or clarification. (Eg. Child signs =music= and I say “You want me to put on some music?” Child points to the fridge and I say “Are you hungry? Would you like something to eat?” — I often phrase things multiple ways, to reduce the chance of misunderstanding or them getting stuck on an unfamiliar word.)
I especially tend to try and problem-solve verbally, making it an interactive process. But today, I had something of an epiphany.
[a side note– Rhythm recently discontinued a seizure medication that was a heavy sedative. Since then, his parents have noted increased attention, alertness, energy, and motor control, but also a higher level of sensory sensitivity and more frequent frustration as he adjusts.]
When upset/approaching meltdown, he frequently signs =stop= and =scratch=, then scratches/claws anyone within reach. This can escalate to hair-pulling and biting, by which point he is usually in tears. It’s obvious that he’s in a great deal of distress, but it’s hard for us to tell what is triggering the distress sometimes.
Today, we had just gotten home from a walk, and he was starting to act worn out– not at meltdown yet, but at the “flop” stage– he plonked himself on the floor and starting signing =stop= over and over. I sat down with him and tried to work through it verbally, asking if something was wrong, if he could tell me what he needed, if he was hungry, in pain, needed to go to the bathroom, wanted a bath. I was asking these things calmly and slowly, trying to zero in on something I could do to make him less miserable… I hate seeing him so unhappy, and I was so at a loss for how to help him feel better.
He grabbed my wrists and scratched them, nearly crying. Then he took my hands and placed them over his ears. Something clicked in my brain, and I shut up. I finally understood that not only was he past the point of being able to answer my questions, but the very act of my asking was hurting him further.
So we sat there together in silence. After a moment, he made one of “our” faces at me, initiating a game we often play of making funny faces at each other. I responded in kind, and we made faces until he relaxed and smiled, at which point I tentatively asked again if there was something I could do for him. He asked for a drink of water. I nodded, and held out my hand to help him up.
When we went to the kitchen, his grandmother was cooking dinner, and began chattering at him cheerfully about what she was making. He fell apart again, dropped to the floor, and dug his fingernails into her leg. She suggested a bath, he agreed, and I hustled him away to the bathroom to get ready for the bath with minimal talking.
I’m honestly ashamed that it took me so long to figure this out– for a very simple reason. As I sit here writing this, I’m wearing ear-protection headphones, the kind you use around power tools. Because I had gotten to the point, as I occasionally do after a stressful or busy day, where I was afraid I would scream and cry if anyone else spoke to me– or even around me.
All sounds have the potential to drain my energy, but listening to speech that my brain has to process can be especially stressful, even for such a language-oriented person as myself. When I have limited processing power left, I can’t afford to spend it all on parsing information that other people are throwing at me. I was so exhausted by hearing their words that I could no longer hear myself think. All I wanted was for everyone to shut up and let me feel like myself for a little while.
Maybe that’s how Rhythm feels sometimes, too.
Skills are funny things. Kids acquire them in fits and starts, lose bits of them again, develop bad habits along with good ones, and intersperse balky moments of complete obtuseness with unexpected flashes of pure genius. Anyone who’s ever tried to get their child to demonstrate a new skill on cue for camera or proud relatives knows just how frustrating it can be when you’re sure a child has learned something, only to have them look at you blankly when you provide them the chance to do it again.
Fishy’s language ability is like this. He has a stable vocabulary of 6-7 hand signs (some of which he occasionally confuses with each other, and 2 of which he rarely uses unless prompted), plus a reasonably good ability to select items by pointing to them, provided they are nearby. He can string together 2-3 signs in a row in little proto-sentences, and we generally speak his signs aloud as he does them, adding in syntax and prepositions and so forth as needed. For example, if he signs =Fishy= =want= [points to book], we’ll say “Fishy… wants… to read a story.” He often signs out of order at first, then corrects himself, so the above sentence would probably look like:
Me: “You want…”
Me: “Fishy… Fishy wants?”
Him: =want= =Fishy= =want=
Me: “Fishy wants… what do you want, sweetie?”
Him: [pause, then points to the book]
There might be even more mix-ups and repetitions before I finally get a full sentence. It’s made more confusing by the fact that he has no signs for “yes” and “no,” so if I misinterpret what he’s pointing to or guess incorrectly at his meaning, I don’t always know it unless I give him what I thought he wanted and he starts to fuss. Then we have to start all over. He is, on the whole, remarkably patient with me.
There are also a few signs that his ABA therapist uses with him regularly, prompting him to imitate her, both in sentences and in songs (like “Itsy-Bitsy Spider” or “Wheels on the Bus”). The first big piece of language development I witnessed was when he adopted one of these signs and began using it on his own in other contexts. The sign was =time=, which the therapist used in “time for a break” and “time to say bye-bye” at the middle and end of each session respectively.
Now, he uses the =time= sign to indicate wanting any activity to start or finish! Since he hasn’t seen so much of me in a long time, when I come over now, he spends a lot of time signing =time= (for) =Fishy= (and) [points to me]… especially if I start having a conversation with his parents or paying attention to his baby brother instead of playing with him!
More exciting still, Fishy has now invented a sign of his own. A few months ago, his parents and therapist began noticing him using a hand-sign they had never seen before, and he would sign =want= and then the mystery sign. He often did this often towards the end of his therapy sessions, when he gets to watch a video for a few minutes (he adores movies), so they wondered if it might mean “movie.” If it didn’t, they didn’t want to give him the idea, so they carefully watched when he used it for some time, and decided that it did in fact mean “movie,” and started treating it as such. Vocabulary by consensus– I think this is a common way for little kids and their parents to agree on what a word means (you decide your toddler means “bottle” when he says “buhbuh,” and so “buhbuh” becomes the word for “bottle” in your house, at least for a while).
This alone is pretty incredible, given the smallness of his vocabulary and how long it tends to take him to acquire new signs. But something even more amazing was about to happen. He’s extended that sign to further meanings. (He’s done this before with signs that were taught to him, adapting them as needed: =more= sometimes gets used to mean “yes,” =goodnight= can also mean “I’m tired of this activity and want to stop”).
I found this out while having lunch with him. He gets regular “snack” rewards for eating his lunch well. They used to be specific rewards for eating X number of bites, or other discrete steps, but now they’re treated more like dessert– he eats a reasonable amount, then gets to ask for a treat. When he signs for a =snack=, I offer him a choice between 2 of his favorites– bite-sized graham or cheese crackers, veggie puffs, gummies, or yogurt melts– and he points to the one he wants.
On this particular day, he kept signing =movie= and I was baffled. Movie time isn’t till evening, and as much as he loves them, he doesn’t usually start begging for them until fairly late in the day, or unless he’s sick, and never before in the middle of a meal. The sign was still relatively new, and I thought he might just be over-using it, as he sometimes does with new signs. So I kept prompting him “Movie? No, you know it’s nowhere near movie time. Do you mean you want a snack? Can you sign ‘snack’ for me?” And he would sign =snack= and then go back to signing =want= =movie= and I was utterly baffled.
Finally, he pushed away the snacks I was offering him and leaned WAY across the table and pointed at an empty container of a third type of snack that I hadn’t even noticed was there. And the light went on in my head. “Oh! You want one you like better! You were trying to tell me you wanted a different snack, your favorite snack!” I ran and grabbed a new container of those snacks and was rewarded with a huge grin when I offered them to him. So I think the =movie= sign also means “favorite thing” of any kind. And I think that Fishy is one smart cookie.
So, I recently wrote a mini-article elsewhere (now available here: https://restlesshands42.wordpress.com/). I wrote the piece partly as a tongue-in-cheek parody of all the advice given about managing behavior in special needs kids… but I’m glad to see it being taken seriously as well.
The internet is full of information in the “autism community” (which consists almost exclusively of parents and professionals discussing autistic children) about how to “help” those of us who function differently, and how to love us unconditionally despite our flaws, and how to be “aware” of us, and especially how to change our behavior– kindly, lovingly, and with the best intentions.
But I see all this from the perspective of those standing in that spotlight (although I myself was lucky enough to grow up with a mother who believed wholeheartedly in letting me be myself and fought to put me in small private schools and other situations where I could function my best). And it’s an uncomfortable light to stand in.
When parents trade tips across the web on “managing challenging behaviors” in their kids on the spectrum, the AUTISTIC community (that is, autistic adults and young adults, and far more autistic children than neurotypicals realize are paying attention) sees a world that wants to fix us and make us into something other than who we are. We ask why we are always the ones who need to change. Why is foot-tapping (a common neurotypical stim) socially acceptable while rocking (a common autistic stim) is not? Why do parents and educators focus constantly on our differences and deficits rather than our strengths and joys? Why are we always the problem to be fixed, the burden to be endured, the puzzle to be solved, the ones who are “hard to love”?
Again and again, we press back. Echoing Amanda Baggs “In My Language” video (http://www.youtube.com/watch?v=JnylM1hI2jc) Julia Bascom writes “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” (http://juststimming.wordpress.com/2011/10/05/quiet-hands/). I wrote this article to remind neurotypicals to make that effort to move 3% of the way towards our world, towards our ways of thinking and communicating and interacting.
I also hope it will make them more aware that it is hard to do things in an unfamiliar way, to maintain constant awareness of your posture and words and how much noise you make. That it is frustrating and embarrassing to see yourself spoken of in clinical terms, to have your actions and interests dissected and discussed by all and sundry, to be singled out and put on display for simply going about your daily lives, pathologized for your personal quirks, medicated for your attempts to express yourself, misunderstood frequently, and constantly, constantly corrected.
And I wrote this for people on the spectrum, to remind them that they are not always in the wrong, that their needs are valid and should be respected, that it’s ok for them to feel confused and burdened and conflicted about their loved ones as well.
And I wrote it for all of us, to remind us that “normal” is not some objective gold standard that we should all struggle to achieve, but all too often a form of tyranny by the majority, and that creating a more equitable society requires that we take multiple perspectives into account when we decide what our gold standards should be. I wrote it to remind people that good intentions are not enough, and that just because something works for you doesn’t mean it will work for me. Being more “normal” would not make me a happier person, and if you try to force me to be more like you, it’s only going to hurt us both. So let’s learn to respect and accommodate each others’ needs. Let’s remember to make the efforts and the changes more mutual. And just maybe, we can build a world that isn’t so very frustrating for us disabled and neurodiverse folks to live in.
This is really exciting. On my latest visit, after being away from several weeks, Fishy’s grandma told me that he’s been making much more active attempts to communicate, including increased use of pointing and signing (though he still has a limited range of signs and tends to mix a few of them up) and lots of verbalization.
Fishy at one point had a speech therapist, who I never met (though I helped with the mouth-muscle exercises she prescribed), but she apparently made a lousy impression on the entire family, including Fishy himself. I only mention it, really, because Mommy told me that Fishy never vocalized in this therapist’s presence, so she had no way of knowing what she had to work with. And I was amazed, because Fishy is an absolute chatterbox with me.
Let me clarify that a bit: Fishy doesn’t have any verbal vocabulary. He has a narrow range of vocal sounds ranging from an open “ah” of varying volumes and durations to similar variations on a sound I’ll transcribe as “ehn”– not a speech sound in English, but the nasal sound that you get if you try to make an “nnnn” sound with your mouth open in a wide smile. He seems to use them primarily to express pleasure and excitement, and, increasingly, simply as a form of engaging someone socially.
I hold two kinds of conversations with Fishy. In the first, he babbles at me and I fill in all sorts of things I imagine he might want to talk about– “Did you have a good day at school? I bet you did! You learned lots of stuff, huh? You can show me later. How’s Mommy and Daddy and Baby Brother? I hear you’re very good with your Baby Brother. Bet you’re proud of him, hmmm? Is that a new toy? It looks like you really like it.”
For this, I take my cues from context and from his facial expressions. He still doesn’t have signs or actions that denote “yes” and “no,” but he certainly responds with emotional displays. If I say “Did you have a good day at school?” and get a huge grin, I follow it up with “Oh yes, you did!” If I get a blank look or (rare) a pout, I follow up with “Not so much, huh.” I am not reading his mind, or even translating/interpreting for him in any systematic sense, just trying to engage him with the sorts of topics I know he can relate to. He seems to enjoy this immensely.
(Related, but slightly different: when I know a specific thing Fishy is expressing — giving his gesture for “I’m excited,” signing +want,+ or pointing to a specific item– I always verbalize it, both so that he knows that I understood him and to help him share the information with others present.)
Second, we hold lengthy exchanges of sounds that have no specific meaning. Fishy says “Ah!” and “Ehn!” and I say them back at him, and we alternate, often varying the sounds a bit from one iteration to the next– “Ah” is followed by “Aaah” and “Aaaaaah.” Sometimes I mimic Fishy as closely as possible, sometimes I include new simple sounds– “Oh” and “Ba” and “Mmmm”– typical baby noises or variations on Fishy’s own vocalizations.
And here’s where it gets really exciting, because Fishy is starting to mimic me back. If I switch from “ah” to “ehn,” he may do so too. He’s very attentive to the other sounds I make, as well. “Mmmm” seems to fascinate him, and I’ve noticed this before.
This time, as we sat facing each other, I responded to his “ehn” with “mmm.” He watched me intently, and then narrowed his mouth a little and said “ehhnn.” I repeated “mmmm.” And he came back with a sound that was very nearly “nnnnn.” Of course, I praised him like crazy!
This is essentially the basis for a process ABA therapists and animal trainers refer to as “shaping”– rewarding successive approximations of a desired behavior. First you praise any attempt in the right direction, then slowly start requiring increasingly accurate attempts in order to get rewarded. The details of how to do this best do take a bit of work, but I’m not doing anything nearly so formal with Fishy. When he’s with me, he knows categorically that I’m always thrilled to see him try something new. And he rarely needs much encouragement– he’s very eager to learn.
His parents and therapists have decided that his speech therapy, at least for now, will be done via his ABA sessions, and apparently they’re going to work on teaching him the sound “ba” first. I can’t wait to hear him discover consonants!
But a different breakthrough happened that day in his ABA session. He adores toy animals, and we were playing with his big plastic barn. We prance the animals around, put them in and out of the barn, etc, and talk about it while we do it.
We got out the cow. “A cow says moo,” the therapist said cheerily. “Moo” I echoed. “Ah!” chimed in Fishy. “Mooooo” I repeated. Fishy looked me right in the eye and said something that sounded a lot more like “oooo” than I’ve ever heard him say before. His therapist and I looked up at each other in amazement. “That’s right!” we exclaimed simultaneously, “A cow says moo!”
I was… blown away. I’m sure every parent has these moments– a first word, a first step, a first smile– that just stop the world and make you want to jump for joy. But there’s a special added thrill in Fishy’s case because I don’t always know for sure if he will ever be able to do certain things until he does them. Every typically developing child will speak a first word. But with Fishy, I had no idea if he ever would, or if so, when. Now, while I still have no idea whether speech will (or should) ever become his primary mode of communication, I have the distinct sense that he will have a first spoken word. And that is something truly worth celebrating.