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Just Amazing

Sometimes my job is difficult, frustrating, or annoying. Sometimes it makes me feel like the luckiest person in the world. This day was the second kind. And not just because I got to wear a bathing suit to work!

***

Less than a year ago, I would arrive at his house, pile into the car with him and his mother, and buckle his seatbelt for him. We would drive from place to place– park, playground, and so on– and try at each place to get him out of the car for some exercise and fresh air. Sometimes he would come out and play. Sometimes he would refuse to leave the car at all. Sometimes he would sob and claw at me or pull my hair. This never made me angry, but it did make me sad. Sad because I hated for him to be so unhappy.

Today I arrive at his house and he whoops with excitement. I lay out some laminated photos on the counter– beach, playground, pool, park– and call his name. He comes over, and without hesitation taps the picture of the pool.

“Ok!” I say, “We’ll go to the pool.” He grins. We get ready and head out to the car. By the time I get there, he’s already in his seat with his seat belt buckled, ready to go.

When we arrive, I ask him to carry his lunch box while I carry his backpack. He does.  We pick a bench and put down our belongings. He kicks off his sandals and runs into the pool. I don’t need to hold his hand. I join him in the water and watch him while his mom takes care of the toddler. 

***

He’s in a great mood, and is eager to interact with me (sometimes he wants to enjoy himself all alone and that’s ok too). He tugs my hands and tucks them under his arms. I bounce him up and down in the water to the best of my ability (he’s grown so much in the past two years!). I spin him around, and we both laugh with delight. I push off the wall of the pool with my feet, and after a few minutes he imitates me– another thing I couldn’t imagine him doing last year. We work together to find different ways I can hold him and move him in the water. He’s so relaxed, so happy, so affectionate. He could easily swim by himself, but he wants me to hug him, put my hands under his back while he floats, roll him over and over.

***

I notice him watching a younger boy who is practicing swimming underwater, pinching his nose with his fingers. I suggest to my client that he try it too, and explain to him about the need for exhaling or holding his nose so he doesn’t get water in it. In response, he dives, blowing bubbles like a pro. Obviously, he’s known how all along. What’s cooler is that he was displaying that knowledge for my benefit– letting me know that he knew. When I first met him, he seemed uninterested in communicating with me except to make requests.

***

He watches a group of kids his age playing catch in the water. This is another recent development– he used to ignore other children completely. I encourage him to join in, but I can’t blame him for hanging back. Only once have I witnessed him really playing with another child, and it was an autistic boy a few years younger than him. Seeing him watching this game, my heart aches for him. I know what it’s like to be the kid who can’t figure out how to participate, or is too afraid of rejection to try.

I get him a ball from his backpack, and he plays with it by himself for a few minutes while I stand by the edge of the pool watching. Then he tosses it out of the pool. This usually means he’s tired of playing with a thing, but on a whim I pick up the ball, call his name, and throw the ball back at him, expecting him to ignore it. To my amazement, he turns to look, reaches up, and catches it. 

“Wow! That was great! Throw it back!” I suggest enthusiastically, cupping my hands. He pauses a moment, not seeming to pay attention… then gives the ball another gentle toss out of the pool, but not really in my direction. I retrieve it and throw it, and again he catches.

“Throw it right at me this time,” I say, and again he seems to be ignoring me at first, but a few moments later the ball lands at my feet. The next time it almost makes it to my hands and I cheer as if he’s just hit a home run. 

I’m grinning like crazy. He’s playing catch with me. It’s beautiful. I don’t care about him doing this to be more “normal” or because it’s what the other kids do. I care because he’s having fun and he’s sharing that fun with another person. 

I’ve never before seen him choose to do any kind of structured activity with another person. Never seen him do something that involves taking turns, that involves this level of response to someone else’s actions. I want to grab the people next to me and tell them they are witnessing a miracle. I want to call the national news. I can’t imagine being any more excited if he were my own son.

***

It’s a day full of moments like this. He swings on the rope dividing the pool into sections. 

“Off the rope, buddy,” calls the lifeguard. He doesn’t respond. I call his name, and he looks up.

“Leave the rope alone please” I call, and he lets go of it immediately. His mother and I have always suspected that he understands most if not all of what people say (in more than one language, too). But only in the past 6 months has he started regularly responding with actions that make it clear that he understands. 

In response, I’ve completely stopped using the short, simplified sentences that I often used when I wasn’t sure of his comprehension level. Now I just talk to him like I’d talk to any other preteen, chatting about all kinds of random things.
Later, a few other kids are playing on the rope, and the lifeguard again instructs them to let go. To my surprise, my client also looks up at the sound of the lifeguard’s voice, seemingly alert to the possibility that he’s done something wrong. I reassure him that he’s ok where he is and he goes back to playing. 

His awareness of everything around him seems to be growing by leaps and bounds. Or perhaps he’s always been paying attention but hasn’t been able or willing or interested in responding. Whatever the change, it means I no longer have to hover over him and, for example, physically drag him away from that rope. It allows him more independence.
***

By now, I’m sure any autism parent reading this is dying to know how these changes were accomplished. So first, let me point out that he is no less autistic. All these wonderful new things he’s doing, he does them while stimming and shrieking, flapping around, sniffing and tasting things that he probably shouldn’t, and having meltdowns over tags in his clothing. He is and always will be autistic. But he is becoming a more communicative, interactive, cooperative, friendly, self-confident, and independent autistic person, and to me, that’s the true measure of success. And the best kind of success.

Because there’s been no special diet or medication or new therapy. In fact, most of those things were discontinued completely over the past few years. He has made these changes himself, with the support of the adults around him. 

Some of his independence came of necessity. There have been a lot of life changes for him that were totally unrelated to autism. One grandparent died and another moved away and his mother had a baby. As a result, there were a lot fewer adults tending to his every need or making demands on him, which gave him both more freedom and more responsibility. He’s matured a lot emotionally.

The other thing that happened is that he’s gotten some autistic adults in his life– first me, then a man who has a remarkable knack for visual communication. There wasn’t any lenthgy teaching involved– they’ve worked together for no more than a dozen hours. But somewhere in those few hours, there was an “aha moment” for both my client and his mother as they finally zeroed in on a method of communication that both could understand. There’s still a long way to go before he’ll be able to tell us more than a handful of things, but the breakthrough has happened and now he knows that it’s possible for him to make himself understood in a way that he never could before. Since that realization, I feel he’s become much more interested in learning new things.

I think it was crucial for him to meet adults who were somewhat more like him, who intuitively understood thimgs about him that his parents and teachers and therapists did not. It doesn’t take much. The vast majority of his time is still spent at home with his family, and his mother also provides the other crucial ingredients to his success: unconditional love and constant encouragement.

Accept. Love. Encourage. 

Keep accepting. Keep loving. Keep encouraging. 

Celebrate every new attempt, no matter how unsuccessful, every step forward no matter small. Not the fake programmed encouragement of tokens or rewards or empty praise, but genuine appreciation for the effort you see a child making. Acknowledge difficulty and setbacks. Children learn best when they feel safe and supported. When they are learning because it enriches their life, not out of desire for praise or fear of disaproval. Learning is its own best reward. Success builds confidence, and confidence leads to trying new things, and trying new things leads to more success. 
***

Here are things I say to him often:

Try.

You can do it.

I believe in you.

Try again.

Thank you for trying.

I’m proud of you for trying.

I know it’s hard.

You’ll get there. I know you will.

You can do it.

That’s better.

You’re making progress.

Keep trying.

It’s ok to fail. 

You can try again later.

You’re wonderful.

You’re the best.

You make me happy.

Keep trying. You can do it.

I love it when you _____.

***

Unconditional love. Unwavering acceptance. Unending encouragement. They are magic ingredients.

As I drive home from his house that afternoon, the radio plays a song that always makes me think of my clients. As Billy Joel sings “I love you just the way you are,” I find myself crying. I cry in happiness for the wonderful children in my life and the joy of seeing them grow and learn. I cry in sadness for every autistic child who doesn’t have unconditional love and acceptance. I cry because I am lucky to know that perfection, like beauty, is in the eye of the beholder, and I wish more people understood that. I wish every person in the world could hear those words when they matter most:

“Don’t go changing/ To try and please me…. I want you just the way you are.”

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Communication is a collaboration

August 8, 2017 1 comment

It takes (at least) two people to communicate. The transfer of information does not happen in a void. Lots of professional people have written professional things about this, everywhere from brain injury journals to Star Trek fan forums. Here’s what it looks like (sometimes) in real life:

My client takes his mother’s hand, tugs. She follows him into the kitchen. He pushes her hand in the direction of the cupboard that holds cups and glasses.

“You want water?” she asks him. She doesn’t expect a reply, at least not the normal kind– a word, a nod. His response will require a little more decoding.

She takes a glass out of the cupboard, puts some water in it, hands it to her son as she and I chat. He sets it on the counter beside the sink. Takes her hand, pushes it back toward the glasses. She offers him an empty glass– perhaps he wants to fill it himself? He waves it away.

“You want me to get you something different to drink?” She opens the fridge. “Juice? Milk? Show me.” He closes the fridge. Brings her back to the cupboard. She is baffled.

“Maybe he wants to play with the bubble cup?” I suggest. The cup appears to have bubbles suspended in the sides, and sometimes he enjoys looking at it. We were blowing bubbles earlier in the day. It could be a matter of association. She offers him the bubble cup. No. He pushes her hand back towards the shelf.

It’s easy for people to get frustrated at a time like this. It’s frustrating to her that she can’t understand, that her son seems to be requesting something and then rejecting it. It’s frustrating to him that he can’t make himself understood. But they don’t give up. She knows her son isn’t doing this to be annoying. He’s trying to tell her something. She begins taking the cups down from the shelf, one after the other, and each time he pushes her hand up again. She knows the message is here somewhere, if only she can be patient and find it… and she does.

She brings down a mug, and her son stops pushing her hand, rests his hand on her arm instead. Her confusion clears immediately.

“Oh! You want tea!” I am surprised. I would not have thought of this. I had no idea he liked tea. He wants tea, on a hot summer’s afternoon. His mother makes him tea.

These moments of working together towards a shared understanding are so simple and so complicated at the same time. They can be as trivial as a request for tea, and absolutely crucial to building a common world, a relationship, a mutual language. It is beautiful. Communication is a basic human need. Every time I see someone succeed at it, I smile.

Notes About Learning Language

May 14, 2016 2 comments

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.”

“At”

“Yes, cat.”

….

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.”

“Ok, 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?

Bee-bee-beeeee

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/

 

Autism Awareness Month: Before You Light It Up Blue

March 27, 2016 2 comments

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 Days in My Life

December 29, 2015 Leave a comment

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.

Fever Dreams and Philosophical Musings

Last night, I fell asleep with a mild fever. My life chased me into my dreams.

***
In my dream, my client breaks something while I struggle to help his mother in the kitchen. His ABA team makes him stay up all night cleaning, and in the morning a troop of therapists convenes to discuss how he needs even more ABA. I’ve met many of them before, but I’m having trouble telling them apart, and can’t decide which of them might be sympathetic to my objections.

I argue passionately for less ABA, more communication training. A supervisor sneeringly asks if I mean that faked “facilitated communication” nonsense. The scientists in the room shake their heads sadly. I respond that RPM leads to completely independent typing– look it up! I also point out that a lot of different things fall under the category of “facilitated communication,” mentioning a video I’ve seen in which the only “facilitation” necessary is a gentle hand on the back of the person typing. You can’t control what someone types that way, I insist– just try it! I volunteer to type while a scientist tries to control my typing with a hand on my shoulder. She cheats abominably, but still can’t force me to type what she wants.

The room grows fuller, as adults with physical disabilities arrive to make the point that being a disabled adult is not a horrible sentence. Almost every hand in the room is raised with points to make, and I have more to say but despair of being called on any time in the next hour…
***

Yesterday, in my real life, an ABA tech mentioned children who were getting 40 hours a week, plus other therapies.

I asked if she didn’t find that tragically sad– the idea of small children having to work more than 40 hours a week. She said she’d rather they had to do 40 hours a week now, and grow up to be functional members of society. (There was a time when I would have agreed with her. The ABA industry mixes up some strong Kool-Aid.)

I didn’t have a way to put my disagreements into words then– there were so many of them crowding my brain. I think I can do so now, though,

1) False dichotomy. There is plenty of evidence (some of it even in ABA studies) that ABA is neither necessary or sufficient for independent adulthood. In less technical terms: Some kids get lots of ABA and grow up to be independent adults. Some kids get lots of ABA and do not grow up to be independent adults. Some kids get no ABA and do grow up to be independent adults.

2) If you’re going to argue that ABA at least gives a better chance that the kid will grow up to be an independent adult, you’ll have to show me some darn good math. You’ll also have to take into account that scientific studies on autistic kids who grow up without ABA barely exist at all, and you can’t make a logical argument that one condition is better than another when you’ve only researched one of the two.

3) I’m also going to lay down some serious objections to the idea that a person needs to be a “functional member of society” in order to have a valuable and meaningful life. There are many people in my life who have inspired me, made my life better, or loved me, or who I have loved. None of those things has ever hinged on whether or not the person could earn a living, speak verbally, live independently, or pass as “normal.”

4) Even if I accepted the premise that ABA=independent adulthood, I would still object. Because, “functionality” at what price? The price of a childhood? An individual’s personality? Their self-esteem? Their happiness? I would not sacrifice any one of those things, and I have known and read about autistic adults who believe that ABA stole those things from them. That alone should give anyone pause– and I do think that if most parents and therapists and ABA techs were truly aware that this was the potential trade-off, they’d hesitate, too.

There’s more to becoming a well-rounded adult human being than learning to sit still or tie one’s own shoes or participate in social niceties. There’s emotional development, and I believe that childhood– an unfettered, exploratory, play-filled childhood– is an integral and irreplaceable part of that development. For counterexamples, look at the emotional damage done to children who lost their childhoods too early– to abuse, to war, to parental drug abuse, to any of the things that make children grow up too fast. There are an uncanny number of similarities between adults from abusive childhoods and adult autistics– and all too often, those are one and the same. And frequently, that abuse has, at least in part, taken the form of a relentless battle on the part of adults to turn the autistic child into something they are not and can never be– a non-autistic adult.

So, if those are my options, I will happily volunteer to change an autistic person’s diaper every day for the rest of my life, or cook their meals, do their shopping, help them cross the street, or whatever other “functional adult” tasks they can’t do alone. Because I love the children I work with, exactly the way they are. And while I do want to help them acquire as many skills as possible, I wouldn’t do it at the price of changing who they are, losing their sense of fun and humor, or making them feel that they aren’t good enough, or teaching them that behavioral control is more important than their comfort, their safety, their right to communicate naturally, and their happiness.