This blog is where I write primarily about disability rights, both from my job and from my own experiences as a person with chronic illness.
I have a BS in psychology, with a concentration in cognitive and neuro psych. Since graduation, I have worked as a psychology research assistant, tutor, and as a caregiver for children with assorted developmental disabilities. This last is my true passion, and this blog is written largely on behalf of the wonderful children and young adults who are my clients.
A note: as they say, “the names have been changed, but the stories are real.” I have altered many details in my posts to conceal the identity of my clients as much as possible. And dialogue is generally not exact, as my memory is, well, memory. However, I have not made any of these stories up. These are all things that happened, both the good and the bad, the heartbreaking and the incredible. Such is life, particularly where children are invovled.
…Running down the hill, full tilt, holding hands, feet flying, gasping for breath, laughing for the sheer joy of it.
Autism means entire conversations held without words.
The constant and constantly changing puzzle-game of trying to understand one another, and the incredible moments of joy and excitement — the Aha! — when one person’s means of expression is grasped by the other person’s brain. It’s a brain-teaser with a truly valuable solution, a code we’re racing to break together.
(I love this about tutoring, too.)
Autism means shouting “yogurt!” from the rooftops. Because you have the right to express yourself even if no one else understands.
Autism means colors colors Colors COLORS!
And happy flapping hands.
Autism means needing a break from stimuli other people don’t even realize are there.
It means the blissfully peaceful look on your face when you come up from a dive, completely renewed by the immersion and the pressure and the magical world of water that holds you safe from sound and smell and the rest of the world.
Autism means that sometimes you need to bite down on your own hand just to get through a certain moment. And that’s ok, too.
Autism means talking in sound effects.
And deciding that we’re not going to use silverware at dinner tonight.
And lying down on the floor a lot.
And sitting the wrong way in chairs.
And hiding under the covers.
And tight bear hugs.
Autism means that something you see or hear or feel or smell or taste or think can be so fascinating that you just plain forget about everything else in the world.
Sometimes it’s like an involuntary mindfulness exercise.
Sometimes it’s frustrating and overwhelming.
Sometimes it’s tranquil.
It’s often beautiful.
Autism means paying very close attention, it really does. Just… maybe not paying attention to what you expected.
…emotions like fireworks — sudden, blindingly intense, incredibly memorable, the center of the world one moment and gone the next, leaving your ears ringing and your eyes blinking away spots…
…and sometimes it means not being able to show what you mean…
…and sometimes being able to express things more sincerely and profoundly than most people can…
…it can mean being a poet, a painter, a scientist, a person who thinks in numbers or pictures or videos or music, a person who reads at lightning speed, who remembers everything, who tastes music or hears colors, who notices the smallest details…
…Autism means being the square peg. Sometimes very obviously so. Sometimes with edges just slightly, almost imperceptibly, too wide for the slot into which everyone expects you to fit.
Autism is where you lose yourself and find yourself at the same time.
Autism means that look on your face when you watch the water sparkle…
Autism means the sounds you make when…
…fragile fascinating fascinated flying falling free focused fireworks…
Autism means you, and you are beautiful.
I just got finished reading this excellent article: http://www.assistiveware.com/are-our-assumptions-about-autism-and-aac-all-wrong
Fortunately, I’ve only once seen a case where an autistic client’s AAC was used in the horribly restrictive way that this article warns against. I have also been privileged to witness some wonderful AAC uses, and I’m in the process of learning how to encourage even more.
But let me back up a little here and tell a story.
The family cat enters the living room and my client perks up and points.
“At!” He says excitedly, “At!”
“Yes,” I say with an encouraging smile, “That’s a cat.”
“At,” he repeats.
“Cat,” I agree. A few minutes later, just in case I had forgotten, he points at the kitty again.
“At! AT! AT!” He looks extremely proud of himself, as though he has just discovered (or possibly invented) the entire idea of cats.
“You’re so smart. It IS a cat.”
“Yow,” he adds, grinning from ear to ear.
“Yes! Cats say meow!”
“Yow. Ow. At.”
“I see that.”
This client wasn’t one of my Respite kids. He was a typically developing toddler. And I suspect anyone who has ever had a toddler has had many conversations of this type. This is by way of reminding you what “normal” language development looks like. Lots of labeling. Lots of repetition. Lots of speech that, while not meaningless, seems rather purposeless.
So why on Earth, when an autistic child does this on their AAC, do people call it “stimming” and take the device away? Or worry that it is inappropriate, problematic, or inhibiting learning? And even if they don’t object, they certainly don’t engage and respond, much less encourage. And I think they should.
A client with some fine motor difficulties forms odd sentences on a device, inserting the word “iPad” at intervals, so it might read something like “iPad I want iPad park iPad swings.” Watching this, I develop a theory. I think the “iPad” button is being used as a home base, a starting point, a reference. “I know how to get to the ‘park’ button from ‘iPad,’ so I’ll make sure I start at ‘iPad’ first.” This 7-year-old had invented a strategy to help overcome difficulties with motor planning… a strategy that could easily be overlooked or considered a “mistake.” Kids are often much smarter than we give them credit for.
A pre-teen client relaxes on the couch, casually exploring her AAC program. She has a lot of pre-programmed phrases. “Hi, how are you?” “I’m fine.” “My name is Suzanne.” “Call me Suze.”
“Hi Suze!” I say. I want to acknowledge her words, even though I don’t think they are actually directed at me.
“How are you?” The device asks, and she answers it herself, verbally. “I’m good!” It looks almost like she’s having a conversation with the device… Talking to herself, as it were. Maybe she’s got an imaginary friend. Or maybe she’s practicing. I used to practice saying things in the mirror all the time. This kind of “non-meaningful” device use has never interfered with her ability to also use the device “properly” for communication. And she’s enjoying it. People learn better when they’re having fun.
“My name is Suzanne.” says the device. “Call me Suze.”
I’m making toast for an 8-year-old client while his family relaxes in the next room. This kid is very smart, but doesn’t use AAC as much as we’d like. I suspect it feels very limiting to him, as he’s a very precise person. But he finds ways to work around the problems. Sometimes they are downright ingenious.
“I want to eat toast toast toast.” says the device.
His Daddy smiles and sighs, “Don’t worry, buddy, you’ll get your toast. She’s making it for you.” Daddy thought he was just asking for toast. Again. Three minutes after the last time he asked. Daddy thought he was pestering.
“Yup! Toast coming right up!” I enthused. I thought he was just excited. I figured this was his way of saying “Yay! Toast!”
His 10-year-old brother, however, understood something that neither of us adults (both of whom are pretty close to him) even considered.
“He’s telling you he wants three pieces of toast.”
Oh. Toast toast toast. Three toasts. Of course. I’m so glad there wasn’t a therapist there to “correct” him. The repetition had a specific meaning. I wonder how often we miss the messages intended by the WAY in which our clients use AAC, messages we probably dismiss as quirks, oddities, or mistakes.
A year later. The same client has a newer AAC program, one with more flexible grammar and a much larger vocabulary. But he still doesn’t use it for much besides simple “I want” statements. And I don’t know how to encourage it, but here are a few things I’m trying:
- Using the device myself, in his presence. It’s hard, and time consuming, trying to express thoughts this way. Several times I’ve told myself I’ll only use the device and not speak for a given length of time… and invariably, I’ve failed and resorted to speech. That tells me a lot about why exploring the device during downtime is so important. You need to learn your way around so that when you actually want to say something to someone, it doesn’t take you ten minutes to locate all the words you need. I’ve said serious things and silly things and simple things. “I like music.” “I know this is hard work.” “You rock!” I’ve used it to ask him questions. He doesn’t answer often.
- Inputting the beginning of a sentence, such as “I like…” or “I feel…” and handing him the device so he can finish the statement. He’s done so once or twice. Not usually, though.
- Carrying the device around, and handing it to him when he seems to be trying to express something. What active 10-year-old is going to walk around holding something that size? Or any size? Something that fits into a pocket might work. Or having the device always set up in a specific spot so he can run over to it whenever he needs to. That can work at home and school and maybe the playground, but I realize that it’s a serious logistical issue. If you had to put in the effort of finding something or going to another room every single time you wanted to say something, how often do you think you’d bother for minor things?
He and I relax at the laundromat while his Mom goes to pick up his brother from practice. We both enjoy watching the laundry go around, hearing the regular swooshing of the machines. I find “washing machine” on his device.
“Washing machine. Washing machine.” Verbally, I add “I like watching the–” and complete my sentence on the device. “Washing machine.”
He looks up from the machine he is currently watching. I hand him the device, show him how to navigate to the “washing machine” button, under Appliances.
“Washing machine.” He says, then puts the device down.
“Washing machiiiine” I repeat verbally, drawing the word out, exaggerating. I giggle and he smiles. I pick up the device and find “dryer” next to “washing machine,” with an identical picture.
“Dryer dryer dryer.” I write. He looks at me, smiles. My own voice echoes the device. “Dryer.” I point at the dryers in the laundromat, even though I’m quite certain he already knows which is which. I hand him the device. I point to the button that says “dryer” and repeat the word verbally again.
“Washing machine dryer washing machine dryer dryer dryer” he writes.
“Cool,” I say verbally, “I like watching the washing machine too. And the dryer. But especially the washing machine.”
Doesn’t this conversation sound… familiar?
He’s one of those kids that people (myself included, I’m embarrassed to say) inevitably describe as being “in their own world.”* But that’s not true at all. Better to say that he perceives and interacts with the same world we do… he just does so very differently than most of us. We don’t “speak” the same mental language, and many things that most people take for granted just aren’t on his radar. I suspect that plenty of things that are obvious to him pass us by completely, too. He doesn’t often make eye contact, rarely looks at something that someone is pointing at. He doesn’t do social smiles, or acknowledge when people arrive or leave, or have any verbal language. It’s hard to remember sometimes that he’s actually very observant and quite clever.
He’s a musical kid. Hums a lot, whistles better than I do, and does some reasonably good bird calls. He vocalizes a fair bit, especially when happy or excited. But he doesn’t use many speech sounds, and almost no consonants. With one exception. One of his happy verbal stims goes something like this: “bee-bee-bee bee-buh-bee…”
I wondered about this for a while. Why “bee?” Granted, “B” it is one of the early consonant sounds babies learn, but usually after “Mama,” at least, and it’s usually “Bah” rather than “Bee.” “Gah” and “Dah” are also learned early, but I’ve never heard him say either of those. When the most likely answer finally popped into my mind, I couldn’t believe it took so long for the idea to occur to me.
See, he’s from a multilingual household, and the most commonly spoken language at home is… Arabic. Where the standard term of endearment is “habibi” (ha-bee-bee), which means “beloved.” His parents and grandparents and so on use his name as well, of course, but very often he is addressed as “habibi,” especially when people are happy with him.
It’s wonderfully endearing to me that, out of all the things he hears on a daily basis, this is the one he has chosen (consciously or not) to mimic. Maybe it’s his way of saying “I love you” back to his mother, to his family, to the world. I don’t know. But it sounds even more joyful now that I know its origins.
Bee-bee-buh-bee indeed, dear child, bee-bee-beeee…
* Autism expert Judy Endow writes on why she dislikes that phrase: http://www.judyendow.com/autistic-behavior/we-are-not-in-our-own-world/ http://ollibean.com/autism-and-measuring-normal/
This story happened as I was finishing up babysitting one day..
My client that day was an autistic boy in elementary school, minimally verbal, and very bright… but who struggles with making himself understood. Mostly over the past year, he has acquired a scant handful of verbal words and phrases that he can use independently, and slightly less fluency with an AAC program on a dedicated tablet.
It was evening, and his parents had just returned. Kiddo ran up to them excitedly.
“Go!” he exclaimed. (That’s a request — he says it when he wants to go somewhere.) Perhaps he was jealous that his parents got to go out and he didn’t!
“Where?” we asked.
“Go!” he insisted, and started trying to force Daddy’s shoes back onto Daddy’s feet.
We’re working on getting him to use the AAC more. Among other reasons, his fine motor skills are far ahead of his vocal abilities. I keep hoping he’ll learn to type soon.
I brought the device to the doorway, where Kiddo was trying (unsuccessfully) to hold Daddy’s leg in place as Daddy started down the hall away from the door, still asking “Where do you want to go?”
“Cah!” (Car). That’s an answer, and a good one, but not entirely sufficient for planning an excursion.
“Where do you want to go after that? Where do you want to go in the car?”
Back to square one. This conversation went on for a few more rounds, with minor variations.
Lately, I’ve been trying to model AAC use myself. I will type something, then hand the device over. Sometimes I get a response, which is wonderful.
So I entered “Where do you want to go?” and had the device read it aloud (I need to find out if there are proper terms for all these things one does on an AAC device!).
I handed the device to Kiddo.
“Wheh-du-oo-wahn-go?” he mimicked.
I hate when this happens. I know he understands a lot, if not all, of what we say around him. And he is making progress with speech. But, as part of that process, he’s also been turned into a bit of a parrot. He’s so used to being told “repeat after me” and so forth that some part of him assumes it’s a requirement to try and say anything that is said to him. And this can get in the way of actual communication. It’s very sad whenever that happens.
I changed the sentence to “I want to go to…” and I had the device read it out loud. I open the “places” page, and handed it over so he could fill in the blank. He backed out of “places,” went to “vehicles,” and selected “car.”
“I want to go to the car,” said the device, and he half-echoed the sentence.
“Ok,” I said, “You want to go to the car.”
His response wasn’t what we expected, but it was clear enough. Daddy and I shrugged.
“Maybe he doesn’t have a particular destination in mind,” I said to Daddy.
“Maybe he plans to decide once we’re in the car,” Daddy said to me.
Maybe he wanted Daddy to choose an outing. Maybe he just wanted to go for a nice relaxing drive with his Dad. Maybe he hoped Daddy would take him somewhere fun, or stop along the way for fast-food, which happens on longer car trips. Maybe he wanted to go somewhere he doesn’t have the words for.
We didn’t need to know exactly what he was thinking, though of course that would be nice. He got his message across, and we acknowledged it and stopped trying to get him to respond a different way. You have to have this kind of mental flexibility when language is limited. Questions aren’t always answered in the way that you expect.
It’s a fine line to walk between extrapolating based on what you know about a person and “putting words in their mouth” — assuming you know what they intend to communicate. You help someone bridge the gaps, without taking over and steering the communication yourself. It’s a delicate collaboration… And when it works, it is absolutely beautiful.
(Coda: It was time for me to leave at that point, so I have no idea if there was an outing, or what it might have been, or whether it got put off until the next day because it was already too close to bedtime. But I do know that Kiddo told his Dad something, and Daddy understood, and so I went home with one less worry in my heart.)
I’ve had a little something published here:
At an amusement park, I wait in line with my 9-year-old client for a favorite ride. He flaps excitedly, makes little noises to himself. There’s a girl just ahead of us in line, about his age, with her mother. The girl looks at us with apparent curiosity, but not judgement or scorn or fear like some kids do. After a quick whispered exchange with her Mom, she turns to me.
“Is he Deaf?” she asks politely. I suspect she knows someone who is. I smile at her.
“Actually, no. He’s autistic. He can hear just fine, but he can’t speak.”
“Oh.” A bit of surprise there. She still looks intrigued. I look for traces of pity in her face and don’t see them. Good. I offer his name, and the Mom introduces the girl.
“Everyone’s got something special about them, right?” Mom adds, turning back to her daughter. She’s pretty relaxed about the whole thing too. The “everyone is special” line is a bit twee for my taste, but I’ve found that it works really well as an explanation for kids, and it’s so much better than some of the things I’ve heard. So I smile at Mom, too.
And I smile at my client. “It definitely makes him a very interesting person, and I really like that. He looks at things differently from most people, and helps me see things differently too sometimes.”
“That’s wonderful,” says the Mom. Then, to her daughter, “We need people who think differently. The world would be a pretty boring place if we were all completely normal, wouldn’t it?” The girl nods, and so do I.
The line moves forward, and we board the ride.
I don’t know if my client was listening to our conversation, or what he thought of it. But I’d be happy if most of what he overhears people say about him is along these lines. It’s little. It’s simple. They smiled, took what I said at face value, and didn’t condemn it in any way. That may be little, and simple, but it’s also priceless. Why can’t more “normal” people be like that?
It’s almost April, and you know what that means. “Autism” is the word of the day. Speaking of words, many of us were told:
“Sticks and stones may break my bones, but words can never hurt me.”
I think we all know that’s not true. Words can hurt a lot, even words that aren’t meant to be hurtful. So I want to talk about words.
If you are planning to raise awareness about autism this April, please remember: children and adults diagnosed with autism will be listening to your speeches and reading your blog posts and articles. This means your kids. If not your kids, someone else’s. And they often hear or read words like “tragedy,” “crisis,” “burden,” “expensive,” and “stressful” when describing their lives.
These words can hurt feelings and damage self-esteem. They can make children feel guilty and miserable, because something about them– autism– causes so much trouble and unhappiness. They might even wonder if their families would be happier without them. And no child should ever have to wonder that.
I’d like to suggest some other words to use.
- No one wants to be part of an “epidemic” or “public health crisis.” Instead, say “many more people are now being diagnosed with autism.” Also, please don’t compare autism to life-threatening illnesses like cancer. It isn’t fair to either autism or cancer.
- Many people argue about whether to say someone is “autistic” or a “person with autism.” Read arguments for both sides (the formal terms are “identity-first language” and “person-first language”), especially ones written by people with an autism diagnosis. If you are speaking about a particular person, ask them which term they prefer. Saying that someone is “on the autism spectrum” is usually a good compromise. Please don’t say that someone “suffers from” autism– it’s just too depressing!
- Instead of saying that autism is costly, stressful, and a burden on families/society, talk about how to make things better! Say things like “autistic people and their families need our support and understanding,” “people on the autism spectrum deserve access to more services and opportunities” and “we can all contribute to a better future for children diagnosed with autism.” Remind the public that proper education and work accommodations pay for themselves because they allow people with disabilities to live more independent and productive lives. Most importantly, remember that finding happiness and meaning in life are possible for all human beings, no matter how severely impaired.
- Suggest ways to help in your community. Encourage local businesses and organizations to plan autism-friendly events. Remind people to be patient and sympathetic when they see someone having a meltdown. Promote jobs for people with disabilities. Give money or technology to special education classrooms. Donate a book by an autistic author to your local library. Sponsor a disability-rights lawyer or expert on disability services to speak at a public event. Fund a field trip or summer camp for kids on the spectrum.
- Share positive stories. Every life has success stories and wonderful moments. We see great strides forward in the world of autism every day. Young people like Carly Fleischmann, Ido Kedar, Dillan Barmache, and Jordyn Zimmerman are changing our understanding of autism, showing us how much is truly possible even for those who are profoundly disabled.
Create hope, not despair. Spread love, not fear. Move beyond “awareness” and aim for acceptance and inclusion. Our children are worth it.