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.
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.
Some thoughts that keep floating around in my mind lately, particularly in response to conversations I see on social media:
I’ve said some positive things in the past about certain versions and applications of ABA. While I’m not retracting those statements, I feel I need to point out a few things.
1. Apparently, I have been privileged to meet some truly unusual people in the field, and some companies that are so far from anything Lovaas envisioned that I don’t think he’d recognize them as ABA at all. Yes, they are behaviorism-based programs intended to alter a person’s behavior, and I know some people are categorically against this. But, honestly, all good parenting has to include some similar method for steering a child towards better and more adult behavior: incrementally, calmly, and consistently.
2. The examples I’ve seen of ideal ABA use are almost all with children whose primary diagnosis is not autism. I am realizing more and more how important this factor is. Kids who have a global developmental delay for some other reason (such as Down’s syndrome, cerebral palsy, or a chromosomal disorder) are often given a secondary diagnosis of autism based primarily on language delay and a bit of stimming, and I suspect they are mostly given the diagnosis in order to qualify for getting ABA covered by their insurance. And, because a lot of these kids are not really, or at least not very, autistic, the goals of an ABA program are much more in line with a developmental trajectory that makes sense for them. Which is, in short, a lot more like a neurotypical developmental trajectory, but slower and with modifications, than it is like the developmental trajectory of most autistic people.
So, yet again, what distinguishes “good ABA” from classic ABA? It’s not the lack of aversives (what most parents call “punishment”). It’s not the fact that they no longer believe in stopping kids from stimming (although that is definitely a necessary step in the right direction!).
Here are the major factors I’ve observed.
1. Good ABA consists of sessions that are no more than 1-2 hours a day, with multiple breaks, and not every day. This is a way to guarantee that even if traumatic factors remain, they are not the entirety of that child’s world. It also gives you the chance to see whether or not sessions are making your kid feel more stressed or not.
2. Good programs focus on goals that are genuinely useful. Not eye contact and writing your name, but things like:
– the ability to communicate reliably through some method (but not insisting on a single form of communication)
– safety skills like responding to the word “stop!”
– self-care skills like hand-washing, and, for older kids, independence skills like preparing food.
This alone is not enough to make a program non-abusive, but again, it’s an important place to start. Enduring something that the kid dislikes or finds uncomfortable may be a goal at times, but only when that something is hard to avoid/accommodate any other way.
3. Not pushing past a child’s tolerance level. Good programs teach and respect the use of the word “no.” They back off when they see a child becoming frustrated with a task. They don’t use physical force against a kid (yes, there are actually companies that have a “never restrain a client” rule). In short, they allow the kid some measure of control, which is probably the most critical factor in countering the abusiveness of traditional ABA. Obviously, there is still a power dynamic involved, and kids are still asked to do things they don’t like, but that’s true of almost all interactions between kids and adults. There is a big difference between getting a kid to follow a lot of the rules that other kids have to follow and demanding total, unquestioning obedience. I’ve certainly seen “ABA” sessions that involve more input from the kid than most classroom situations.
By now, anyone who endured classic ABA (or something close to it) is probably shaking their head, rolling their eyes, and/or asking if this is even remotely possible within a behavioral therapy setting. I genuinely believe that it is. Whether it should still be called ABA is a totally different issue, and a highly contentious one at that.
I’ve certainly witnessed sessions that met all these criteria. And, fortunately, very few that failed entirely on all these counts. Most commonly, though, I see either problematic methods with sensible goals (which is a hard one for me to know what to think about), or acceptable methodology with questionable goals.
Does meeting all these criteria make “ABA” perfect? No. Is there still room for abuse? Of course. There is also significant potential for abuse (intended or not) in any parenting situation, educational setting, and interaction with other children (in fact, I think kids are pretty much guaranteed to traumatize one another– have any of us, autistic or not, truly never met a bully, had a traitorous friend, or been mocked by our peers? I’d be very surprised.)
And there are other issues, including the stigma of being in therapy at all (although many programs are now so play-based and naturalistic that younger kids probably wouldn’t even identify them as anything other than having a slightly weird babysitter…). There is the fact that ABA practitioners don’t tend to respect the intelligence of their clients even when they do respect things like their sensory needs. But that, too, is by no means limited to ABA people– I’ve seen enough teachers use that high-pitched sing-song voice and appalling phrasing with neurotypical kids (the primary difference may, in fact, be that autistic kids are likely pick up on the fact that this is insulting far earlier than NT ones do). At least the good ones practice what they preach. They wait patiently, they take turns, they say please and thank you to their clients. How many of them mean it is another matter. But at least they understand that you have to show respectful behavior in order to expect respectful behavior, even if you’re only giving lip service. I know a few parents who could stand to learn that lesson
There’s the fact that repetition is not the best way for most autistic kids to learn, especially when it comes to intellectual skills (it may be helpful for procedural memory and building good habits, though). And, while I’ve met plenty of ABA folks who are genuinely fond of their clients, it is still very rare to find anyone in the field who truly believes that being autistic is not only OK but something to be appreciated.
Good news and bad. Successes and frustrations. We take steps forward and steps back. Sometimes we fly. Sometimes we fall.
I accompanied a client to the Get Air trampoline park a few times recently. They offer support people free admission with their clients. And one time, when my the client declined to go on after we had paid and entered, the staff gave us a voucher to come back and try another time. Which we did. And had fun. (In the meantime, my wrists got sore pushing him on the swing for a whole hour. It was worth it to see the smile that lights up his face when he feels comfortable.)
Unfortunately, Sea World here in San Diego has stopped issuing the disability passes that allow the escort/assistance person free entry. Which is a real pity. Fortunately, another one of my client families still has the old pass.
So that client and I went to Sea World, and more and more often I find myself thinking of him as my friend, rather than my client. A friend is someone you enjoy hanging out with, right? Someone whose intentions you trust (over-all, if not at every given moment). Someone you want to make happy, and who does nice things for you as well. So yes, by these criteria, this nonspeaking grade-school boy is my friend, even though our relationship is not one of equals, both because I am an adult and because I am his professional caregiver.
We’ve gone to Sea World before, with his family, but this time it was just the two of us. This was a very different experience. With just us, there is less talking, more flapping and bouncing. Less scheduling and more wandering. Less of me holding his hand (he’s older, now, too, and much more aware of his surroundings than he was even six months prior). More of me letting him lead (he knows the place much better than I do, after all). We got lost a few times (or maybe we went around the long and repetitive way on purpose. What do I know?), but we eventually ended up wherever he wanted to be. At least I think so. Sometimes I’d bring him over to a map and ask him to point to what he wanted. Sometimes this worked. Sometimes not. He was patient with the fact that I’m terrified of the Sky Ride. I know it’s one of his favorites, so we went on it anyway. But only once.
There were a few rough moments, including a minor meltdown/explosion on his part, for perfectly valid reasons. No one got hurt, and the only damage was to some food items. Then he opted to go into a quiet exhibit and watch the fish until he felt all better. I didn’t talk to him any more than necessary or make any demands on him while he was recovering. There were some awesome fish at the exhibit. Also turtles of various sizes. We were each excited about different fish, but shared a fascination with the electric eel. It was very big and ripply.
Throughout the day, we got some confused or surprised looks, but no disapproving ones, at least not that I saw. Both the staff and our fellow visitors seemed unsurprised by his buzzing hands, assorted vocalizations, and sudden detours. Sometimes we even got smiles. I guess increased autism awareness isn’t always a bad thing, at least not anymore. When he was jumping up and down blocking an exhibit and I said to the woman waiting to see, “Please excuse us, he needs a few minutes to calm down,” she simply said there was no need to hurry. It’s hard to imagine getting that response a number of years ago. I’m sure some places and/or people would still give us a hard time. But not that day.
There are the little moments of coded recognition, too. No one there ever used the words “autism,” or “nonverbal,” or “disability.” But there was the exhibit guide who mentioned that she enjoyed seeing such a wide variety of people every day. I have no idea if she was referring to my client in particular, but I wouldn’t be surprised. I was certain when the woman behind us in line for a ride, with an obviously highly distractable younger child, said sympathetically, “Waiting is hard, isn’t it?” that she had recognized something familiar. “Especially for this one,” I nodded, giving his shoulder a reassuring squeeze. “This one, too,” she said, smiling at the child by her side. And I knew that we were each accompanying a child who had a diagnosis that made them something of a square peg in a world full of round holes. We had adjacent cars for the ride, and both kids grinned ear-to-ear and shrieked with delight as we spun through the air. My legs were a bit wobbly as we dismounted, but we didn’t even have the chance to say goodbye– we were already racing off to the next adventure, and I suspect they were, too.
We both had to make some compromises. I vetoed the cotton candy, and he would have liked to stay longer and go on more rides. For my part, I would have liked to watch some of the animals for longer, and avoid some of the more crowded spots (not to mention the Sky Ride). But all the same, I can’t think of anyone else I would have rather gone with. I was strongly reminded of a blog post in which an autistic mother talks about her surprise when she realizes that not everyone envies her for her autistic children and the fun they have together. I almost felt sorry for the other visitors, who were obviously missing out on the great experience I had.
On our next outing, we’ll be going to the San Diego Zoo. I’m looking forward to it. And I just can’t understand why more people don’t enjoy the company of autistics.