I marvel at the human healing process. It is nearly four months since we took Nat back home after discovering mysterious bruises on him, and ultimately x-rays of fractured ribs. If you’re new to me, yes, that is what you actually read. My 26 year-old son was hurt by someone or something in his life and we discovered the injuries by chance, on July 3. An investigation followed — and just wrapped up — and the state found no conclusive evidence of either abuse or neglect. That leaves spontaneous fracturing of bones, and as far as I know, that just does not happen.
But Nat, God bless him, bounced back so quickly. He was ready to trust people again — other than a few in his former programs (he has told me definitively that he is not going back to any aspect of his old life.) He jumped at the chance to go off to Colorado for his favorite sports camp — and attend for two weeks. He gladly went to parties, movies, social group outings. He took walks with respite people.
He does not seem to be in any pain. But now we know that if Nat becomes very still — and in this case, straightens his arms strangely when trying to laugh, and refuses favorites like jumping in the pool — something is wrong and must be looked into. He won’t tell you he is hurt, or he can’t, or he doesn’t feel it as acutely as we do, or…?
I still replay all of this, so many times, coming to the awful conclusion that I missed something. So did everyone else, but I am not everyone else. I am his mother. You ask God for a child, He gives it to you, you damn well better take it seriously. But I guess that doesn’t mean you can’t mess up. But you mess up and he pays the price. How am I supposed to let go of that?
I can’t. So I focus on other things. I take action. But I’ve also learned that time has a hand to play here. I’ve been living Nat’s recovery and our renewal moment-by-moment, and at the same time, I have been able to sit back every now and then and observe our process — and progress.
July we were reeling. I spent a lot of time crying and wrapping Nat up in my care, the most basic expressions of Motherlove — making his favorite food, arranging his room so that it was comfortable and cheerful for him, pillows, comforters, CDs spread out on the floor. Compressed my brain into one shape, one thought: How do I help Nat heal? What are his favorite things? Okay: physical activity. people who are his age. travel. car rides, vacations, plane rides. That’s how I remembered the sports camp. I asked him about it, and he jumped at it. I then had to arrange it all very last minute and find the money to cover it, but it all fell into place. If it’s meant to be, I told myself, it will happen. And it did.
The nurturing of wounds, the indulgence in pure pleasure filled our July. I could see he was okay. By August we were able to start looking into the future. His day time occupations. What should he be doing with his time? He didn’t want to return to his old job. Enough with the shopping carts. So what else? I did what I’ve always done: ask other moms who were happy. Nail down the places with the best reputations. The places that communicate a lot with the parents. Who give choices, who have consistent, compassionate staff. A diverse, friendly peer group. Then we’d visit them. Take Nat along and see how they respond to him, and he to them. Happy people, happy choices, open spaces, lots of eyes on him. I found a good place and so August was Nat’s transition back into a daily routine.
September brought with it transition to schedules and calendars, pastel gardens to jewel-toned burnished leaves. Soft air became more defined, and time ordered itself into slots. Nat loves this. I do not. But once I gave up Summer’s sweet lazy heat, and plunged deeply into fall’s cool pool, I was okay with it. I settled into Nat’s new routine, and suddenly I had much more time — to teach and even to write a little. I could feel my body coming back to its old form, sensible eating, hardening of muscles. I was reemerging, following Nat’s lead.
I started to think even longer term, to the time when Nat would move back into a home of his own. I believe in this. Children gift you with their presence, ensnare you with their care and needs, you gorge on their buttery fat, their innocence. They harden and morph into real people who have to go out, away from you, into lives of their own. Seek their fortune, is how the fairy tales told it.
I determined that I would not rush this. Somehow after the initial stress of having Nat back in our house 24/7, the worry of how to care for him as an adult, to get to know him as a roommate essentially, we reached a kind of symbiosis. Like my return to physical strength and health, I came back to the very old, very familiar ways of mothering. I got used to him. I got to know this older, more mature, more together Nat. Not that he’s totally mellow or easy; he does some really noisy stimming, some loud fake-sounding laughter, and occasionally gets really mad at us for disappointing him somehow. Well, yeah, he’s human.
We get along, the three of us. The way we do it is, like the coming of autumn, we plunge in. Like anything really rewarding, you have to take that initial jump and make that first effort. Going into the ocean, it’s cold at first but worth it. The cold becomes the excitement. Or starting a bike ride, it aches in your muscles and burns your throat from the work. You try not to mind the hill because it’s part of it. And then there’s the downhill that always makes your heart jump and you gulp in the air along with the joy.
So Nat’s social life has become our social life. We take him to parties with us. And everyone knows Nat and they are both delighted and maybe inconvenienced by his habit of walking around and around the room and in between conversations and sitting right down at the buffet table and eating. And we have our Special Olympics friends, our music group friends. He takes social group outings away from us and we all get a break from each other. We still do spontaneous dinners out, but now we have to be aware of Nat’s noise and mood, and choose restaurants wisely. Or do takeout. And he’s learned that we do takeout in front of the TV, not at the dinner table.
It’s not going to last forever. I can see that October and November are going to be months where we start to ask around about group homes or potential caregivers. I’ve already started. But I’m not in a hurry. Yes, I’d like to be able to take the trip to Venice that we cancelled when Nat came home. I’d like to be able to spontaneously go to a movie with Ned and not think about Nat’s comfort.
But for now I’m still in it, Mother mode both old and new to me, where every thought does have a whisper of obligation in my ears, a constant, light pressure on my shoulders and heart; but that, I have found, is the weight of love.
When Nat was a very little guy — before I knew about the autism that seemed to be knotting tight little nooses around his brain cells – I wanted nothing more than to be that friendly-faced mom who took her toddler to every single enrichment activity she could find. There was something called Warmlines, which promised mommy support and toys; Gymboree; library book hour; mother-child swim class; baby music school; and on and on. I’d go, but every single one of these activities blew up in my face. I became more and more wary of the “amazing” teachers, the “patient” librarians, the fun-loving moms because my little guy just did not fit in. He would suck his thumb and just watch, or he would cry and cry. Or mouth the communal toys or walk in circles.
This experience was symbiotic, however. It was not all on autism. It was me, too. I don’t know if I was reacting to the Autism Unacceptance/ignorance going on with those mothers and their precious little normal kids, or if it was that I was going in with a big rock on my shoulder, but I was damned uncomfortable in those places. I soon began to feel that everything was going to fail and that something was just wrong with my son, my parenting, and the stupid world.
To be really honest, I only blamed myself. Of course I did. Who blames a darling son, my Nat who caught my heart so hard that I almost didn’t dare to breathe. This boy, from the moment I clapped eyes on him, was in need of protection. Almost from the beginning of his life, I knew that my life was no longer my own.
I don’t know when it happened, sometime around when Nat was 10 when I got the idea to sign him up for gymnastics in Cambridge, with Special Olympics. I think what fueled this was a burst of development (on his part), a new level of communication skill, a new exuberance with the world around him. He did great in gymnastics even when things were falling apart for him in school and at home. And from then on, I put all my faith in Special Olympics.
We went through all the Phases of Special Olympics Parenting:
1) shy, hesitant, will-this-work?
2) hey, look at that, he’s actually playing!
3) hey, no one is judging him!
4) hey, the other parents get it!
5) hey, the parents are friendly!
6) hey, let’s make a playdate after practice! (First playdate!)
7) hey, the State Games are amazing hooplah-achievement-pride fests!
8) hey, there are other sports, too! All year-round! with the same guys!
9) hey, what else can they do, in addition to sports?
10) hey, my kid has a life.
Fifteen years after gymnastics, I am PhD-level Special Olympics Mom. From Special Olympics I have made some solid friends, joyous people who make any excuse to throw a party where everyone’s invited, who find new organizations, new pursuits for our kids, who even create them. One friend found a violin teacher for his kid and out of that grew MUSE Foundation and two performing bands. Nat is now a drummer. Another friend has started AHEF, the Autism Higher Education Foundation, first as a partnership with the Boston Conservatory, and then with area law firms so that our guys can learn symphonic music, and also intern in offices doing data entry, shredding, copying, filing. Another friend started a social outing group so that our guys could go to concerts, sports events, movies, mini golf, restaurants. This venture led to our town expanding Parks and Rec to offer Recreation Therapy, and now our guys take cooking, nutrition, and computer classes. And one other friend discovered Ascendigo, a fantastic extreme sports camp for autism that firmly planted Nat into the Most Athletic Guy in Our Family category.
Nat learned how to ride a horse at Ascendigo, and that has now led to my finding him Equestrian Therapy at Ironstone Farm. I am hoping that there will be other animals around that will ease Nat out of his fear of dogs. But that may also happen through his Day Program, which offers Buddy Dog volunteering once a week or so.
So this fall, Nat has: Band on Tuesdays, Flag Football on Wednesdays, Drum Circle on Thursdays, and Equestrian Therapy on Fridays. In November we’ll start basketball on Saturdays.
I take Nat to these activities and I wait outside, or hang around the perimeter of the field. I talk to the parents or I don’t. By now I’ll see those friends of mine — the autism parents I’ve known forever by now — at one of the parties or the social group trips or the drumming. When I start to drag my heels and think about retreating — that decades old leave-me-alone tendency of mine — there’s this one friend who needles me into going. Autism friends don’t let autism friends sit home alone.
And if that doesn’t work, there’s always Nat who looks at his busy calendar and demands to go. I can’t imagine not having a full calendar now, and it’s because of Nat. Perhaps those neuron knots that seemed to be choking off his development just needed time to form their own pattern, and strengthen his mind into what it is today: powerful, determined, social (!), and ever-expanding, a universe in itself.
I’ve read many Nazi Germany books in my lifetime. Now I’m reading “All the Light We Cannot See.” I would advise anyone who is thinking at all that they would vote for a bully like Trump, to read this book and observe how It happens. Germany was ahead of everyone in civilization, sophistication. But they were suffering economically after WWI. They found their focus, on Jews, immigrants, disabled people. Anyone perceived as stealing from them — jobs, money, food, resources — and bit by bit they justified their cruelty. Little by little. Google Nurmeberg Laws. Read The Banality of Evil. Learn. Think.
Look at Trump’s background, look at his callous statements. He says *anything* he feels like. Not appropriate for a president. Downright dangerous. A president is scrutinized for every tiny nuance, by the rest of the world. Slights can start wars. Imagine Trump and his careless anger, riling another country. And look at his immigration policy. That alone should scare you. You think Hillary is uppity? Crooked? You’re worse than a fool. In the name of Something New for America, you are making the same mistake as the Germans. Evil can have a joking face on it. He’s no buffoon. He is evil. This is how it happens, make no mistake. Don’t kill our country. Vote for Hillary.
Nat has always had a laughing “behavior.” I say “behavior” because it seems small of me to label something as wonderful as laughter as a behavior. But in autism, a behavior, of course, connotes something that needs to be changed. But when you speak of “behavior” without “a” modifying it, it can be good or bad.
Nat has been doing the Daffy Laffies for as long as I can remember. I actually remember his first laugh. As so many things are with Nat, you could watch him consciously learn how to laugh. You could actually see the realization lighting up his eyes, the delight with this sound, this feeling in his body. We were on the couch, the three of us. He was standing on Ned’s chest. He couldn’t have been more than a few weeks old (?) but yes, he was standing. Way before he could walk or stand for real, he would shoot up from your lap like rockets at his feet. Mom and others feared he would be bowlegged. Turns out legs were the least of our worries.
There he was looking down at us, with his white-blond hair and his eyes that looked like Cleo’s, the fish from Disney’s Pinocchio. He said, “Hehhlh.” a partially spoken, partially gulped word with a British “L” at the end. We laughed. He said, “Hehllh,” again. So happy with himself. One of his first sounds of communication. Then he strung the Hehhlhs together, connected with breaths and there he had it: laughing. “You laughed, Natty!” I might have said, dying to hear it again.
In a video from let’s say 1990 — real Baby Nat — he’s lying on the floor at my mom’s house and I’m waving some little stuffed thing in his face. He explodes, laughing with his whole body: a twitch, a squeal, surprised eyes. Then he settles back down into the rug and seems to forget all about it. I wave the little toy again and there he goes, his torso leaps (though he’s still lying down, too young to even turn over) and his laugh floats out of him like bubbles. Insane bubbles. Mom got very weirded out by the laughing — or perhaps by the way it would stop completely and then start up, zero to 60.
I see it now and I know, yes yes that’s probably autistic behavior, and I was feeding right into it with that stuffed thing. Why the hell not? Was it going to make him more autistic? Zounds. And by the way, just because it is autistic behavior, does that make it bad?
Well, sometimes. At age 7 Nat would wake up in the middle of the night laughing. During those days his laughter only filled me with despair. I wanted to sleep but something was waking him up. Dr. Bauman, our neurologist, thought maybe this was a small seizure. We tried to give him an EEG but he didn’t sleep deeply enough so it was inconclusive. I don’t think we pursued the laughing at that point; we were only interested in getting him to sleep the night. Clonidine eventually took care of that.
Over the years the Loud Laughing has been with us. At 13 I feared he would “spoil” his bar mitzvah with an outburst of uncontrollable laughter. His teachers told me to redirect it by having him alphabetize index cards. We stopped that eventually because it felt wrong to be squelching laughter. “We had to name him Isaac,” Ned would say sardonically. (Nat’s middle name — Isaac — means “laughter,” in Hebrew.)
So at 26 he’s at it again. It seems to start up when he says “wheels,” in his self-talk. I don’t know what “wheels” means — wheels, I suppose, but what’s funny about that? Only Nat knows. I hear “heem heem wheels,” and I know that soon there will be hysterical laughter. He pushes it and pushes it until it is so obviously fake it actually goes from annoying to truly funny. But still annoying. It begs to be stopped. But you can’t tell him to stop because then his eyes turn into Cleo’s again and he’s delighted. What may have started out as a self-stimulatory behavior — to boil it down to ugly clinical terms — morphed into attention-getting behavior. So how do the Genius BCBA’s treat this one? Pay attention at the beginning, ignore at the end? Yeah, screw that noise.
Nope. The best way to stop it is to say, “What’s the joke, Natty?” And then it dries right up as if laughter never existed.
But it will trickle back when he senses your relief that it’s over. You can watch it happen, his serious face all drawn together into a horsey moue, but if he looks at you, it cracks open to the real thing. And it’s pure Hehhlh.
If I were a good mother, I’d read to Nat every day, on the chance that it would spark something and he would eventually read to himself. Or maybe it would make him want to talk. But I sit here, sleepy and addicted to my own book, comfortable in the big armchair. Nat seems happy in his room. Didn’t I hear him laughing up there? Fake laughter, but still. Something he enjoys.
If I were a good mother, I’d go upstairs and engage him so that he is redirected from fake laughter.
If I were a good mother, I’d have Nat make his own lunch. I would start with small steps. Choose your snack. Get a baggie. Eventually he would find the entree. Let me know when we needed to buy more. But that’s a stretch. He could do the snack, the baggie. He’d find an entree. He already can do that. But letting me know when we needed to buy more? That’s a whole new set of skills. That’s a leap that autism jumps up and blocks.
If I were a good mother, I’d type with him on Facebook. I would force us to wait for the words to catch, for his attention, his comprehension, to spark. For his fingers to type. But haven’t I done that? He struggles so much with reading the posts, with understanding what was said, what is expected of him. He does not understand what comes after someone talks to him. Only what he has been directly taught. I ask him what is on his mind, what does he want to say, and he types our names. The five of us.
If I were a good mother, I’d feel happy with that.
If I were a good mother, I’d have signed him up for therapeutic horseback years ago, not just now that I found out he liked horses at camp. But I remember, so long ago, the two places that offered it were full. Waiting lists for years. They were also located 50 minutes away. Also, how do you pay for them? You have to call your insurance? That’s the worst thing next to car repairs and taxes.
If I were a good mother, I would have researched that program everyone talks about, in Merrimac, an hour away. Such good things about it. Horses, shared living, everything. But I don’t want him to live that far away. And I don’t want to discover that once again, everyone was a little wrong. Nothing’s perfect, but I never stop feeling like it is at first.
If I were a good mother, I would research maybe five programs before choosing where he is. But I stop because it is so tiring to go, to tour, to explain who Nat is, to watch them try to understand him themselves, to include him. It’s boring. It’s sad.
If I were a good mother, I would have realized he was unhappy for a reason. Losing weight for a reason. Holding his body stiff for a reason. I wouldn’t have stopped at a psychiatric solution. I would have insisted on an investigation. And back when we thought he had pain somewhere on his lower right side, I would have pushed the ER doctors to do an x-ray. We would have probably found out way back then that something was very wrong either in his apartment life or his workplace or his program.
If I were a good mother, I would know how to parent Nat and I would have the endless energy and wisdom to follow through.
I was asked to update Nat’s resume now that he is at a new day program. I believe that all young adults should put together a resume, thinking outside of the box about possible skills they have. It’s all in how you look at it. Think of stim as a skill, hobby. Think of conversation tracks. Obsessions. Any of these are clues into a person’s interests and motivations. And so, parents, teachers, and caregivers — you should think this way, and help his/her facilitate responses. I put Nat’s resume together on my own, because it is tough/nearly impossible to get Nat to think this abstractly. And as you will see, his jobs have been very concrete. That is the kind of thinker he is. Your son or daughter may be different. Think about what they do and what that looks like, and maybe match it to some kind of job task. Nat has to put everything away, and clean things up as soon as possible. To me, this means he should perhaps have a job putting things away, cleaning up. And so he has. See below:
Nathaniel Isaac Batchelder
Objective: To work at a job with at least one well-defined task, preferably having to do with organizing and storing, with some variety and physical movement involved.
Education: May Center, Randolph, Massachusetts. Graduated 2011 with distinction.
2012-2016: Parking Lot Attendant,Shaw’s. Duties included collecting shopping carts, baskets, recycling. Awarded Employee of the Year 2014 by Service Provider.
November 2011–2012: Stockperson, CVS Drugstore. Duties involve stocking all coolers with drinks, keeping area clean of spills.
2009 – 2011: Coupon Messenger and Package Assembler, Papa Gino’s Pizza. Responsible for disseminating advertisement flyers throughout local neighborhood. Also in charge of assembling large volumes of pizza and entree boxes and stacking them up when finished. Worked with very few breaks.
2007-2011: Delivery, Office, and Cafeteria Assistant, May Center. Multiple responsibilities include carrying messages from school to corporate employees; entering data into PCs; taking snack orders for classrooms, assembling orders, and delivering to the classrooms; setting up and wiping down counters and tables before and after lunch. Took joy in completion of all tasks.
2006-2016: Delivery Assistant, Meals on Wheels. Responsible for carrying meal trays into homes of elderly and disabled. Friendly and professional demeanor maintained at all times.
Other Relevant Experience: Sorting, washing, and folding laundry; vacuuming; emptying and loading dishwasher; raking leaves; entry-level lawnmowing; baking (breaking eggs, using mixer, setting temperature, greasing pan, measuring, putting ingredients away, using oven mitts to remove hot things). Any lifting, carrying, gathering. Willing and able to bring anyone anything.
Other Interests and Skills: Walking fast, biking, horseback riding, rock-climbing, basketball, swimming. Keeping track of schedules, ascertaining arrival and departure of those in the home, keeping track of the location of items, putting everything away, letting people know what is wrong or needed with a modicum of language. Creating singlehandedly an original language to keep thoughts private from others. Remaining calm under pressure.
References Available Upon Request, from practically anyone I have ever met.
I think I was about seven years old the summer we took our first trip Out West. We stopped at many of the major National Parks and camped there, too. Hooked to our Ford Country Squire station wagon we had a tent trailer that slept four, and had room to eat inside, but that was it. Most of the time we were outside or under the tarp that doubled as the camper cover. I kept a diary that really makes me laugh now, to see what my little girl mind made of the experience (lots of exclamation points). Like most children, I took my emotional cues from my parents. Worrying about my loved ones’ states of mind ran through my psyche like a taut rubber band. But this was just a part of me, that vibrated with other traits like my impulsiveness, my daring, and my natural curiosity. Tennyson would have called me red in tooth and claw — but my parents called me The Red-Faced Child — someone who tumbled headfirst and breathlessly into action and trouble. I loved turmoil and drama. One of the first entries is about how my sister Laura forgot her “ditty bag” (the one that held personal items like toothbrushes). This set the tone that afternoon, even though we were driving to some remarkable new place. I was a child in tune with every nuance of mood, every shift in the family landscape, this made me all the more vigilant over my things. It also made my experiences all the more intense, brighter, or darker. And so the journeys out to gigantic, wild California, Washington, and Oregon were a perfect match for my little dramatic heart.
The trip was boring at first, according to my memory and diary. Not a whole lot of difference between our home state of Connecticut and Pennsylvania, Delaware, and Ohio. But when we hit Indiana, I had my first inklings of adventure — from the sickly metallic taste of the water, the judgemental glare of the sun, that bent the pale grasses with shame. There was a smell — pink-brown and hot like the soil in the fields that were everywhere. Everywhere. It was like one infinite piece of paper.
But I was not bored. Just impatient to move through it, feel it, onto the next thing, which Mom and Dad said were the mountains. I had seen mountains, in Vermont, that surrounded us like a pretty, curving fence. This is what I expected of the mountains of Colorado. But as our car bumped along through Illinois, I saw nothing. Nothing but the same flatness and the same white clouds.
Then I realized the clouds were not moving. They lay ahead on the horizon in the same white angles and shapes no matter how much closer we came. Suddenly I saw gray shadows showing through them. These shadows sharpened into darker lines, sketching ghostlike shapes underneath. And then I knew: these were the mountains. And the white clouds were not clouds at all: they were snow caps. My parents laughed softly at my big eyes and from then on referred to this view as “the sketches.”
You didn’t enter the mountains the way you enter the ocean; my familiar Cape Cod offered large waves that you had to give yourself up to, with a cold that bit your skin. But the mountains, though magnificent from the distance of the prairie, once we were at their feet started off low green, and folded like a fan. My excitement plummeted. Where were those stark, scary giants? But we went further up and in, the green of the trees darkened and then fell away, until you were above them and all around you was — at last — an ocean of rock.
We got used to the mountains, except for my sister, who had terrible headaches and nearly fainted from the altitude, the “thin” air. I loved the concept of thin air. Was it less nourishing, somehow, bare like bones? Is that what they meant. All I knew was it made me more tired, out of breath. We set up camp in first National Park I remember, Rocky Mountains. Our campsite backed up to a large meadow, bordered in the back by purplish-brown foothills. I remember the adorable chipmunks there, and Mom warned me they carried Bubonic Plague, but that made them even more tantalizing to my sister and me.
Cleanliness and order were the keystones of my childhood. Mom and Dad took parenting very seriously. They strove for Right, Reason, and Responsibility in everything. Mom scrubbed, vanquished bugs and checked dates on things. Dad built intricate structures of rules and expectations. He mapped out our Out West trips scrupulously, with atlases, pencil compasses, and diaries filled with car mileage and expenses. They were teachers, and so money was to be watched carefully. Setting up camp was no different than keeping our home together. It meant taking all the tasks seriously, doing your chores, and playing after. First we assembled our camper – metal rods slid into place as bed supports, rocks stabilized the tires. Mom and Dad set up the camper stove, wiped down and swept up. And Laura and I were sent with the red jerry can to get our water. This was such a difficult task – that thing was heavy when full – that we learned not to waste a drop. We took this lesson with us into the campsite showers, where sometimes we had to pay for the water with quarters.
At night we would gather firewood – I learned the difference between tinder and kindling – and we had campfires. Dad and Mom told scary stories. Dad’s were scary in a rated G way, but Mom’s were Psycho scary. Sometimes I would play my guitar. Laura and I would fight over everything – jealousy and pettiness are always the dirty underside of close siblings. But there were moments when I knew deep inside that this was good. There was a moment when Dad said, “Let’s vow to come back here with our families when you guys are grown up.”
We loved our Rocky Mountain campsite, and parks that followed. The frozen nights and cold water only bathrooms in Glacier National Park. The fun of Old Faithful – it really did come up every 90 minutes! The Bermudan colored hot water pools in Yellowstone, where I learned that you had to stay away from because a boy had fallen in and quickly his body had melted to a skeleton! Mount Rushmore, there it was, the big president heads! The Grand Tetons, which mean – Oh My God! The buffalo that appeared yards from our car in the sunset of Teddy Roosevelt Park – Dad got out of the car to take a picture, even though the rangers had told us that they could turn on a dime and run as fast as a car. The Grand Canyon, red and orange as Hell, and so vast that its edges were mere shadows.
We took this trip three more times, so enchanted we were with those places. Now familiar with what we would see, I could look forward to the sketches and the chipmunks with the excitement of a reunion. Especially our campsite in Rocky Mountain; Dad had taken note of the precise location and we came back to the exact space again and again.
But Laura and I became teenagers and found we wanted to be on the beach where the boys were, and not in a camper with our parents. It was decades before I thought of seeing The West again. But when Mom turned 75, she announced that she wanted to take a trip, all of us, someplace special. And it was obvious where that would be: Rocky Mountain National Park.
This time we all stayed in hotels. The first day there, we got in our cars and wound our way up the switchbacks, to Rocky Mountain campground. We were looking for our campsite, but what were the odds that 46 years later it would be there? Still, we were happy just to have returned.
But Dad – of course Dad had consulted his old notebooks and he knew exactly where to look. We drove through the park and the hair on the back of my neck started to tingle. There was the bathroom. The water pump, the rocks we’d carried the water over. And there, off to the left, the meadow. It was our site. It had to be. We got out of our cars. Somehow, though, our kids and husbands knew to hang back. Mom, Dad, Laura and I stood there looking around, remembering, tears streaming down our faces. Mom and Dad older more delicate. Laura and I deep into middle age, gray wisps in my hair. But the mountains leaned in like they were part of us, and we felt like we could live forever.
My emotions flicker like a tired eyelid. At the oddest moments, say in the middle of a soft cruise down a flat side street on my bike, my heart flips over. Just like that, sun behind a cloud, lights out. I’m sorry Nat. I wait for tears but they are just stuck.
Or there are the not-at-all-odd moments, like 3 in the morning, when I imagine the horror. Did someone hold him down and punch him, kick him? Was there actually a crack, a crunch as his ribs broke? Or was it some sudden, frightening fall, crash, face-down? Did he make a sound? He hasn’t cried in maybe a decade — but did he then? And no one knew? No one picked him up? What did he do with his hurt?
Why didn’t I know?
I guess on some level I did know that something was not right. (?) That stillness. That shutdown a year ago. The stiff arms.
Then, the more recent stuff. The inexplicable weight loss, digestion discomfort. Because of fractured ribs?
I am swept back in a terrible undertow of memory, to those earliest days as Nat’s mom, feeling something was wrong with him, somehow, but not willing to fully believe it. Not willing to do the work of convincing my world, not able to stick with that story taking shape in my mind. My baby. I was so consumed by him, long walks pushing the stroller up and down the hills of Arlington, Mass. Talking and talking to him. He was my other half, he was me. That’s how it has to be with a new baby, right?
But it’s never really changed all that much. He is there, before my eyes, when I sleep, when I’m awake. When he’s here, and sits down next to me willingly on the couch. He seems to look to me to understand things, to get things right. I don’t know how much he looks within for those kinds of answers.
His apparent fragile dependency is the part that kills me, but that also makes my heart burst open like a hot red poppy. That dependency is so dear, and so scary. That crystalline clarity of need and trust. His ability to trust — maybe now that I think of it, that’s his disability. That self-advocating we can do, but he can’t.
And yet. Arid hope blows dusty across my consciousness at those odd moments and I wonder. Maybe that ability to trust is also his strength, and will be his way through it.
I have to talk about it. Now. I am on the plane going home from the Autism Society of America Conference. There I presented a breakout workshop on Autism Adulthood: Strategies and Insights for a Fulfilling Life.
But I had to tell them. The end of my book is not written yet, after all.
On July 3 we were headed to a friend’s holiday party and I called Nat upstairs to come put on a new, festive shirt. He pulled his shirt off and there, screaming at me from his thin white chest, was a big yellow bruise. Fist-sized. I screamed for Ned. I don’t know how I formed the words but I did. “Someone has hurt Nat,” I shouted. I looked again, horrified, nauseated at what I was seeing. For there was more. There were faint fingerlike bruises on his shoulders, and more, fainter, yellow circular bruises on his upper arms.
Several hours later the Emergency Room doctor announced that Nat has three fractured ribs, and one more older healed rib.
It has taken me this long to be able to allow the rage, the pain, the hurt for my sweet son, to bubble up like lava from my roiling gut. This anger, anguish, is old, deep as the Earth’s core. And it will never go out.
An investigation is taking place. I have my suspicions. But we have already been told that we may never know what happened. This is the way it goes when someone of limited expressive ability gets hurt. Nat has trouble making himself understood. I may be the best person at understanding him at all, and I am lost at times. I have to rely on all my senses to determine if he is sick or sad.
I guess I now need ESP as well.
What kind of a beast does this to a sweet, well-meaning young man? Nat is a white ray of sun. How can someone want to hurt the sun? It’s just warm and reliable. Nat is warm and reliable, you can count on him. You ask him to do something and he will try his damnedest to do it. I believe that he does not want to be shut off from others because of noisy language. And so my heart has always hurt for him and my arms have always tried to connect him to all of us. He’s not perfect, but his heart is good.
What did he do? Self-stim around someone who couldn’t deal with it? Did he laugh loudly in their face? These are things that he resorts to when he needs to express something, it’s just that I’m not sure what. I do know his self-talk is regular words stretched out beyond recognition. They are the equivalent of a whisper, because they are Nat’s way of telling you without you being able to hear it very well. And the loud laughing? He is blowing off some steam, he is feeling something very strong. Maybe something is funny. Maybe not. But he’s got to do it sometimes. Other times he tries to control it, he tells me, “You be calm.”
I will be calm because what else can I do? I have searched for clues, looked into areas of his life away from me, probed for secrets. I still cannot disclose any specifics because of the investigation.
This agonizing mother cannot simply roar and gnash teeth. I need to be able to bite. So I have talked to the Disability Law Center in downtown Boston. They will take on my case.
At best — best! — Nat hurt himself by accident and people who were supposed to take care of him in our place neglected him, or didn’t notice. And when he was home on the weekends, because he is so independent with dressing, showering, we did not see either.
But let’s not forget: this did not happen just once. Nat also has an older, healed rib.
We have pulled him out of all of his settings and he is living at home with us again for the time being. Typical of Nat, he is in good spirits. I have been doing all I can to surround him with love, food, fun. Ned takes him on their long walks. Ben stayed with him when we had to meet with the team. Max came up just to be there. My sister drove 5 hours to stay overnight to see Nat, to take care of him and me. To be sure that her Godson is okay. My parents, Ned’s family, all our friends have been strong glorious walls of support for us.
But still. I don’t know how I will ever trust anyone again when what I want to do is rip heads off people.
It takes a lot of force to break ribs. But it takes one glance at a sickly yellow bruise to break hearts.
How do you fill 168 hours of meaningful activity after graduation???
It was a good question that Rob Resnik, of Phoenix, Arizona asked the audience at Autism Society of America conference today. Several years ago this was a heavy dark problem for Rob’s son Matt, who is around my son Nat’s age and has a similar degree of autism — a lot. Back when Matt was entering adulthood, he could tolerate about “6 minutes” of work, according to Rob, who is an attorney. What were they going to do to foster independence in their son, and a satisfying adult life?
Rob and his wife Denise, a public relations director, turned to Southwest Autism Association Research and Resource Center’s (SARRC’) “Rising Entrepreneurs” Program for help. Denise, Matt, and Rob did a little research and talking and thinking and came up with a bakery business. “I’m not a baker,” Denise said, smiling, “and you can ask my husband Rob: I’m not much of a cook at all.” Rob was not a baker either. Yet the idea of the bakery seemed right, seemed doable. With eight eggs, a Kitchenaid blender, and Denise’s grandmother’s mandel bread recipe, a biscotti company was born: SMILE, which means Supporting Matt’s Independent Living Enterprise.
Although baking was not their area of expertise, the Resniks were not burdened with fear of failure. In fact, Rob described his attitutde as “let’s see where this goes.” It may be that it was just this light, confident, but zenlike approach that brought them their success. They were wise to partner this outlook with very little capital expenditures — less to lose. They spent money on insurance but little else. They learned quickly, that making partnerships in the community was the way to ensure success. Rob said that there was no grants, no capital contributions, and no donations. They borrowed the commercial kitchen of a homeless shelter one day a week for baking. They were able to pay their employees — two other developmentally disabled young adults, Eric and Rachel — a living wage and stay in business. Eric is a coworker. He’d never worked before. But Eric eventually trained Rachel, another coworker. Rachel was working in her dad’s office. After two weeks of working for SMILE she quit her dad’s office. She does baking at home but also talks to the Point of Sale people at the markets.
The plan was to fit the company to the employees’ needs. If someone needed a particular environment, they could do their baking at home, rather than at the shelter kitchen. They fit the tasks to the skills. There was a strict routine: Sign in; do schedules for each person; do the packing; take breaks; etc. Matt started the day with instructions on his iPad, like “wash hands, put on apron.” Tasks were broken down into small steps if that was what Matt or his coworkers needed. Now there are six employees.
The Resniks added a special ingredient to their business: a thank you note written to the customer, by Matt and his coworkers, is inserted into each box. Denise explained that their edge would be that this product would make people feel happy about their purchase.
And Matt? He now works 6 hours a day. The bakery is his consuming passion. In fact, while I was watching the family present a workshop at the Autism Society of America Conference in New Orleans, Matt was seated at the table in the front of the room, wearing a chef’s hat and apron, working on a shipment.
Now the Resniks have announced that they are transitioning the name of their company to Supporting My Independent Living Enterprise — they are hoping to teach others around the country how to develop SMILE bakeries. This put a huge, well, smile, on my face because my Nat loves to bake and needs a new job…
SMILE is a success. They sold over 150,000 biscotti to date. Denise felt that part of this success is due to the fact that everyone by now has someone with autism in their lives. And only now are people beginning to see guys like Matt and Nat out in the world trying to make their way. But instead of wringing their hands, the Resniks roll up their sleeves. Because they have an idea that works. “When people approach SMILE, it’s not a ‘feel sorry’, it’s a ‘feel good,” Denise said.
And it’s a taste-good.
Long yellow phantom fingers slide over your shoulders
Ghostly mouths cry from your arms
Ribs are slivered, silvered, glinting, teeth inside white skin
Seething with each breath, searing you
But you are silent
Or did you try to tell us
In those days so still. Stiff arms, stuck legs
Didn’t I know, though?
And then there’s the laughter to consider
Was there someone, red-angry, sucked dry — a human scab — held you down, bashed your chest
While a hundred blind eyes turned back to their Day
It’s been a while since I wrote a Keys to the Universe post, but I realize I have some new ones! For those who don’t know, the Keys are ten things or acts that always do just what they’re supposed to do, they are just as good as you think they’ll be, they’re perfect for a particular purpose, right when I need ‘em.
1) Sweet hot cherry peppers — like candy but a vegetable
2) Nat’s new rock band — he does percussion
3) My screened-in porch — it’s newly painted gray and white and perfect with yellow cushioned furniture
4) Reverse Arabic releve step in bellydance
5) Elcim blowdrier
6) Our Cape rental — been going there since 2007
7) Talking on phone through my car — just push a button on the dashboard and there it is
8) Radio interviews — giving them
9) A great essay idea — nailing an essay, knowing that it’s going to be published
10) Catching air on my mountain bike — jumping rocks, roots, curbs, bumps, feeling both tires leave the ground, landing perfectly
How can I stop being sad/worried about Nat? I feel like I’m not supposed to be. I’m so well-versed in autism acceptance that I know I should not assume I understand what he is going through. I do not know what he is feeling if he does not express himself in a neurotypical way. Yet, I need to be vigilant in terms of his health, safety, and happiness. He is a dependent person. He is disabled.
So how do I make sure all is well in his life? What are the markers I’m to look for?
I have several tools at my disposal. I have my own education in social signs, which I use when evaluating what I’m feeling and what I think others are feeling. I’ve learned to read faces reasonably well, to interpret shifting, blinky eyes, to sense sadness in another person, and anger. But I’ve lived enough years as me to know that I’m sometimes wrong about others. My filter goes deep into my skin like catcher’s mask that is too tight, and may distort things I observe.
So when I see Nat furiously flapping and self-talking a blue streak, I have to wonder if something difficult is going on for him. Or when I see him under his covers during the day I wonder if he is depressed, because that is what I do when I’m depressed. How do I read the signs when I don’t speak the language?
I’ve been developing my own list of things I know, in a way of helping myself interpret and giving Nat what he might need.
1) Flapping and laughing: Feeling good. This is when I try to connect with him, when he seems open to sharing happiness.
2) Flapping and talking loudly: His normal state. I actually have to call his name, and stop him for a moment if I want to interact with him. So I don’t think he wants me to interact with him during these times. It’s like, why step into the ocean when the tide is churning?
3) Laughing and spitting: Happy but aware he may need to pull himself together. Laughing and spitting comes with sideways glances at whomever is in the room with him. But he also laughs and spits in his room. It’s not a dedicated spitting; it’s more like a side effect to the laughing. Sometimes I laugh with him and that is when he looks me in the eye, willingly. So I think it is a positive connection. I’ll take what I can get.
4) Flapping and then stopping and sucking his thumb: Something’s bothering him and he’s trying to calm himself. During these moments I try to gently ask if he is happy. This is utterly useless. Language is so hard for him during these times and my questions just make him stumble. I’m doing it selfishly, hoping he will suddenly respond the way I want him to. This state makes me the most unhappy because I become so painfully aware of our disconnect.
Am I saying that during these moments I want him to change? No. I just feel my heart clench, a common Mother pain we feel when we think our children are unhappy and we can’t help them. We just can’t, no matter what we want.
5) Smiling and pacing: Feeling really good (this happens most often when he’s just joined social group, and when he’s at Special Olympics, especially big competitions.
6) Being quiet in his room on his bed: ??? Tired? But is it okay for him to be up there for HOURS? Ben does it. I worry about that, too, but he tells me he is just tired. Max used to lie on his bed for hours, too. So does that make it okay, that Nat is doing it? They’re all different, dammit!
My unsatisfactory solutions: More lists. Because I don’t know for sure, I then tick off all the activities he has done over the weekend or during the week: Work, going to the gym. Cooking class, band practice. Special Olympics. Bike ride with me. Long walk downtown.
I am forever keeping the lists in my head, the “Is this enough?” list and the “Is he okay?” list. But nothing quite works to reassure myself that his mental state is fine. Last weekend when I saw him so busily vibrating hands, head, eyes, without any apparent recognition that others were around. This distressed me.
So I went back to my oldest mantra, my own version of self-soothing when my Nat obsessions kick in: It’s the disability. This is how it manifests itself.
The hardest thing about this disability (for me and perhaps for him) is that I don’t feel like I definitively know his emotional state. The behavior looks like anxiety. So should I be trying to intervene somehow so that he is less anxious? What would that look like, though? Anti-anxiety meds? Therapy? Where do I find a therapist for his discomfiture? And is that called for, if this is his natural state?
And if this his natural state, is he actually helping himself? And it just looks different from how I help myself?
At times like this I kind of wish I was like others who decide something is true and then stick with it. They have the ground of their own certainty holding them up.
But I can’t seem to do that with Nat. I need more evidence, because I fear that I will miss something important.
It’s been a really long time since I wrote just to write. For me, not with an eye towards publication somewhere other than here. I’ve been doing so much promotional work and now presentations for the Autism Adulthood book that I am feeling the need for a different thing to focus on. The thing I do when I want to get away from writing is to write. The thing I want to write about when I’m not writing about autism and my family is autism and my family.
Yeah, I’m not that original. For the last 26 years my whole life’s purpose has been to be a mother. This was not what I was raised to be. I was raised by a Career Woman, a focused, driven mother who went for her MLS degree when I was little and became part of the workforce before it was a thing. Mom was a feminist, and so that term has never been negative to me. I went to college thinking about what I was going to “be.” I studied humanities, world languages, history, literature, philosophy, to prepare my mind and soul for adult life. Mom and Dad taught me to value a life of the mind and then to get a purposeful job and make the world a better place. These values of theirs permeated everything in my childhood. From lists of books that I needed to know, to trips to the National Parks rather than Amusement Parks, to discussions about foreign policy and war, the rebellions of the ’60′s, to what it means to be a friend, a daughter, a sister.
My mother was a good, loving mother, and yet I never imagined myself as a mother. I rarely played with baby dolls. I played with Barbies. I pretended I was older, I lived to be sixteen. I worked as soon as I could, as a babysitter, then a waitress, then an advertising assistant in a work/study program.
But when I met Ned, everything stopped. And then picked up a forceful speed, hurtling me towards him, with a certainty that I’d never felt about anyone else before. There was a rightness, a safety with Ned that was as exhilarating as it was comfortable. He was everything to me: handsome, mysterious, funny, brilliant, kind, and my best friend. My first love, my first lover. And I was his. I thought only that I needed to make sure we would be together the rest of my life, and second to that, I thought I would be a professor of history.
We got married, and I immediately became lost. The career did not come together, but even worse was my crisis in purpose. I did not understand what it meant that we were now married, different somehow than what we’d been. I still loved him, so much, but I no longer loved me. A whole decade of uncertainty and OCD and hypochondria began for me then, and a twitchy sadness and anxiety that made me want to run away, I could not stand the feel of my own skin.
So I did what you are not supposed to do when you feel this way about yourself — or so they say. Five years into feeling like that I decided to have a baby. I thought this would anchor me, keep me from floating around afraid of my own body. I was 27, so it was easy getting pregnant. I knew exactly the moment Nat was conceived, because after a particularly festive and loving Valentine’s Day, late into the night, an image of an explosion came into my head.
And just like that, my life as I had known it, ended, and a new one began. It became the age of Everything You Know is Wrong. Nat turned my life inside out, that’s no secret. But it’s interesting to me to see it in the long view, that in so many ways he came along right when I needed him to. And no, this is not Inspiration Porn for y’all, I’m not saying he was put on this earth for me — I’m not that egotistical. But then again, what’s wrong with believing that your baby is so special that he has a special purpose for you, for him? Who the hell gets to say that this is not true, even though so many other things are true as well? Of course babies happen randomly, autism is genetic roulette — or let’s say, genetic blackjack — and all children have a unique path and affect their parents in mind-blowing ways.
So, yeah, Nat. And then Max, and then Ben. I had them all pretty young, and all thought of doing something “else” with my life just got vacuumed right out of my universe, like a black hole. And yet, what was left was everything rather than nothingness. Now I had a purpose, even if I didn’t always enjoy it or understand it. There were so many times when suddenly things would all come together and my little sons would indeed explode me into perfect pieces of happiness. Max’s easy smile. His utter sweetness, like cake batter — a flavor I never get tired of. He showed me how much fun a mind could be. And Ben’s breathtaking clarity, his black jellybean eyes, seeing everything. The joy that day when he started drawing — pirate ship after pirate ship after pirate ship.
My whole purpose was to take care of those babies. But not alone. I had Ned with me, who split himself — lucky he is a Gemini — and became a father and remained king of my heart — along with my three princes.
And although I can’t say that I never looked back, I can say that I became me again as soon as Nat burst into my mind/life. Max came along so quickly, like Nat’s twin, utterly and magnificently different, beautiful and free. Six years later, my Ben arrived, the rushing back of a long-delayed high tide, sweeping me up in his energy.
Carrying me right back into Ned’s arms.
And there I have stayed, anchored and held by the four of them.
I had an oped in today’s Washington Post, about helping Nat register to vote. You can read it here.
This article from Parents Magazine uses some of the research I did on autism adulthood statistics (costs, limited resources, day program/Medicaid info) as well as a brief Nat story and reference to my book. Keep in mind this is a mainstream media venue, serving people who generally know very little about autism, especially in terms of adulthood issues. Parents wanted it to be a call to arms, so its tone is a bit panicky. Still, I believe we need to shock the world into caring and doing something for our guys in adulthood.
Library Journal highly recommends my book!
Susan Senator (Making Peace with Autism) hits the nail on the head once again with this work that shares her continuing journey as the parent of an adult with autism. Parents often worry about who will care for their children should they no longer be able, but that concern lessens once children are grown and out on their own. Parents of children with autism, however, must address their fears and seek answers to such a scenario before and into their child’s adulthood. Senator tells her experience helping her son, Nat, find a living situation that will support his needs and allow him to be a part of the community. She also relates stories of 30 other families, and the solutions they have found for their children with autism. By explaining how she and others in similar situations manage on a daily basis, the author encourages parents to seek new resolutions in addition to available options for their child. Lists of resources and planning ideas are included.
VERDICT: Straightforward and to the point, Senator’s book addresses many parents’ worst fears and inspires them to step up and create a situation and a community that can support their child in their absence. This is a must-read for any parent with a child on the autism spectrum as well as caregivers, siblings, and extended family. Suitable for any library with parenting and autism collections.—Lisa Jordan, Johnson Cty. Lib., Overland Park, KS
CONTACT: Ashley Vanicek
(212) 643-6816 x 288
“In this book, like her others, the wonderful Susan Senator gives voice to those who are too often voiceless—folks with ASD who seek what they deserve—lives of purpose and possibilities.” —Ron Suskind, Pulitzer Prize–winning journalist and bestselling author of Life Animated: A Story of Sidekicks, Heroes, and Autism.
Autism Adulthood: Strategies and Insights for a Fulfilling Life
By Susan Senator
Foreword by John Elder Robison — author of Look Me In The Eye, (Crown, 2007) and the newly published Switched On, a Memoir of Brain Change and Emotional Awakening, (Spiegel & Grau, March 2016)
“In her frank and deeply touching new book Autism Adulthood, Susan Senator shares the intimate details of her journey with her son, Nat, as he takes his first steps toward maturity in a society that offers few resources for people on the spectrum after they “age out” of the meager level of services provided to school-age children. She faces the big issues – housing, employment, relationships with siblings, finding trustworthy caregivers – head-on, and offers practical strategies for giving young autistic people the best chance to lead happy, safe, and secure lives, mapping a pathway to the future that offers autistic people and their families real hope, rather than false hopes built on misguided promises of a cure. By doing so she offers a blueprint for a world in which people at every point on the spectrum are treated as fellow citizens who deserve respect and the ability to make choices, rather than as puzzles to be solved by the next medical breakthrough.” —Steve Silberman, author of NeuroTribes: The Legacy of Autism and the Future of Neurodiversity
“As an emotional resource, Senator’s book is excellent.” —Kirkus
“Mothers, fathers, and siblings should read this honest account of family life with autism.” —Temple Grandin, PhD, author of Thinking in Pictures and Emergence: Labeled Autistic for Making Peace with Autism
“From the introduction, Autism Adulthood: Strategies and Insights for a Fulfilling Life will bring you to that dark place parents of young adults with autism fear. But just as quickly, Susan offers practical advice through story-telling and concise, how-to strategies that will leave you feeling optimistic, hopeful, and back in control—all any of us can ask for. A thoroughly readable and important book.” —Arthur Fleischmann, author of Carly’s Voice: Breaking Through Autism
“A brilliant book.” —Tim Shriver, CEO of the Special Olympics, for The Autism Mom’s Survival Guide
“Autism Adulthood is a book I will be recommending to every autism parent I know. Senator is as warm as she is wise, as thoughtful as she is knowledgeable, as compassionate as she is informative. Her rallying cry of “All we can do is love each other” will resound in any parent’s heart. Senator loves fiercely—which means she does everything she can to ensure the best life and future for her adult child with autism. This book will inspire the rest of us to do the same for ours.” —Claire LaZebnik, coauthor of Overcoming Autism, with Dr. Lynn Kern Koegel
Autism. It’s a scary word to some, and one that parents are hearing more and more. Beyond the trauma of the initial diagnosis, the difficulties with finding the right schools and educational programs, and the toll it takes on the whole family looms something far more uncertain and terrifying:
What will happen when my child grows up?
In her new book Autism Adulthood: Strategies and Insights for a Fulfilling Life (Skyhorse Publishing, April 2016), Susan Senator takes the mystery out of adult life on the autism spectrum and conveys the positive message that even though autism adulthood is complicated and challenging, there are many ways to make it manageable and enjoyable. From her own son with autism, now in his twenties, she has learned to “never say never.”
Autism Adulthood features thirty interviews with autistic adults, their parents, caregivers, researchers, and professionals. Each vignette reveals firsthand a family’s challenge, their circumstances, their thought processes, and their unique solutions and plans of action. Sharing the wisdom that emerges from parents’ and self-advocates’ experiences, Senator adds her own observations and conclusions based on her long-term experience with autism. Told in Senator’s trademark warm, honest, and approachable style, Autism Adulthood paints a vivid and thought-provoking picture of many people grappling with grown-up, real-life autism. Senator’s is the only book of its kind, as real families share their stories and their creative solutions.
About the Author
Susan Senator is a writer, an activist, and the mother of three boys. Her books include Making Peace with Autism and The Autism Mom’s Survival Guide. Her son Nat, now in his twenties was diagnosed with autism at the age of three, and she has been advocating for people with autism ever since. She lives in Brookline, Massachusetts.
To request an excerptor to arrange an interview with the author, please contact:
Ashley Vanicek / (212) 643-6816 x 288 / email@example.com
Skyhorse Publishing, Inc.
307 West 36th Street, 11th Floor
New York, NY 10018
Strategies and Insights for a Fulfilling Life
By Susan Senator, Foreword by John Elder Robison
Skyhorse Publishing hardcover, also available as an ebook
On Sale: April 26, 2016
People First or Autism Pride?
You will find in reading this book that I interchange the terms “people with autism,” with “autistic people.” I am well aware of and respect the People First movement—the widespread effort to avoid defining someone by their disability (as in the latter example). A few of the people I interviewed specified that they preferred People First language, and I made sure I wrote their section with that in mind. However, I also know of many people on the autism spectrum who prefer being referred to as “autistic.” This group feels that they are indeed defined by their autism, that their personality is wrapped inextricably in autism, and, furthermore, that this is a point of pride. Hence, my solution is to use both terms interchangeably, because I see the value in both philosophies.
No doubt people will also note that I do not use the term “autism spectrum” too often, nor do I specifically distinguish between descriptions like high functioning, low functioning, Aspie, Aspergian, Aspergerian, pervasive developmental disordered, ASD (autism spectrum disorder), and just plain old autism. This is because the current DSM-V (Diagnostic and Statistical Manual Volume Five) has eliminated many such divisions on the autism spectrum, focusing instead on descriptive designations, and on determining possible features of autism (e.g., social, communicative, behavioral, sensory, or intellectual deficits) rather than labeling kinds of autism. Though there has been much discord among the medical, psychological, and autism communities about these changes in the DSM; many agree that terms such “high-functioning” or “low-functioning” autism are definitely outmoded, as they sprung from verbal competence or lack thereof. We now know that a person can be without verbal speech and still have the ability to express himself successfully. Likewise, someone with verbal speech and a very high IQ might be completely debilitated by depression or social, sensory, or behavioral challenges. So I, too, will stick to descriptions of skills and challenges to give you the full human picture of my subjects.
Speaking of the full human picture . . .
In my narrative, I try to avoid describing an autistic person’s unusual actions as “behaviors,” “stims,” or “stereotypies.” To me, these terms are used negatively to signal the need to control or eliminate the behavior or activity, and I believe for the most part that autistic people need to act the way they act. This includes talking to oneself, flapping, pacing, thumb-sucking—all the things my Nat does with autistic exuberance. I’ve learned from Nat and from more communicative adults with autism that it’s “better flappy than unhappy.”
Here is something I wrote for MariaShriver.com, about one of my favorite organizations, Special Olympics, and one of my favorite people: Nat.