Discovering Autism / Discovering Neurodiversity: A Memoir

By Stephanie Allen Crist

One by one by one, all three of my children were diagnosed as being on the autism spectrum. Little by little by little, my husband and I learned what that meant for our children, for our family, and for ourselves. As we learned about autism, we also learned about the dangers our children would face out in the world. We learned that many people viewed our children as being disposable. We learned that we would have to fight to provide our children with quality of life in the present and that we would also need to fight for their rights to have a future. We did not learn, until it was almost too late, that the danger had already begun, that it was present in our home, and that we would wage the fight of our lives across our dining room table.

• Language: English
• Publisher: BookBaby
• Release date: Feb 13, 2015
• ISBN: 9781483549699

Book preview

beginning.

Part 1

Discovering Autism

Chapter 1

Let’s Begin with the Beginning

Do not accept let’s just wait and see, let your doctor know that your baby can’t wait!

— Brandie Williams

I clutched the invitation between my hand and the handlebar as I swerved the double-stroller to avoid a running toddler. She turned, flashed a bright smile at me, and said, It’s the big kid school! A mother with a baby on her hip trotted after the girl, saying, Slow down…slow down. I couldn’t help but notice that the little girl was about the size of my son Willy. I tried to imagine holding Alex on my hip while I let Willy run loose with his peers. My mind was blank. Any time we left our safe, two-bedroom apartment we entered a battleground: my two little boys against the world with me stuck in the middle.

The mass of bodies crowding the hall seemed to be filing in a single direction. I decided to trust the flow of people, assuming that some of them must know where we were supposed to go. We ended up in a large room—a cross between a gymnasium and an auditorium. The distant walls and tall ceiling seemed to echo back every sound in the room. My boys’ cries just added to the general, excruciating din.

I tried to soothe them. I whispered to them. I held both of them together and then each of them separately. Rocking the stroller helped a little as long as I let Willy wrap his blanket around and around his head. Alex just burrowed into the cushions of the stroller and wailed.

Nothing I could do would calm them. Alex wouldn’t stop crying long enough to suck on the pacifier, which usually helped. Willy thrashed in his seat, rocking the stroller dangerously to the side. I started bumping the stroller up and down. I’d lift the front wheels, then the back wheels, kind of like a rocking horse. That helped a little as we stood still in the long, snaking line.

There were just too many people and too much noise. My desperate need for answers trapped me there. I felt some of the other parents staring at me, because they understood my boys even less than I did, which wasn’t much.

You see, it’s not that I hadn’t noticed. I had an old child development book I’d gotten when I was studying for my first babysitting job after I’d turned twelve. The pages were dog-eared. I could flip straight to the chart where the developmental milestones were clearly marked in neat rows, corresponding with age ranges. I knew, physically, my boys were fine. They rolled over, sat up, crawled, stood, and walked right on time.

Yet, despite this evidence, everything felt just a bit off. I expected my children to play and interact with me like other children would, but they didn’t. They played, but their play seemed strange. Our interactions didn’t seem to satisfy either of us. Willy had learned to talk, but then he seemed to stop, go backwards, and unlearn the words he knew. But what kind of sense did that make? Now, he just screamed and cried and threw tantrums. Alex, in his turn, was blissfully quiet. That was disturbing. Alex should have a few words by now, at least mama and dada. Sometimes it seemed like Alex hardly noticed we were there.

So, I worried. I talked to the doctor, trying to articulate my vague fears and general uneasiness, but I always came up short. We’d found a good pediatrician for my boys, handpicked by my OB/GYN. They’d made a good team for Alex’s birth, which had been so much easier than Willy’s. He was a good doctor. I trusted him. I respected the authoritative tenderness he used when caring for my boys. So, when he told me to wait and see, I listened. But I couldn’t shake the uneasiness that boiled within me. So, there I was, standing in a long, snaking line of other parents, each with their respective toddlers in tow.

The other parents must have received the same invitation I did. Apparently, the public school system had some kind of program that involved offering developmental assessments for local children. They wanted to catch children with developmental delays early, before the child entered kindergarten. I didn’t find out about the program until I got the invitation in the mail. When I asked the pediatrician, he’d told me that assessing the boys’ development would require exhaustive and exhausting procedures at a specialty clinic, which wouldn’t be worth it unless we knew something was wrong. When I asked the people at the WIC clinic about my children’s development, they’d just clicked and clucked at me and reminded me how very young I was and that I was too young to be a mother. Nobody told me the school did developmental assessments!

Well, I thought, the school system beat them to it, and my boys weren’t even old enough for kindergarten! My attempt at smug self-satisfaction was short-lived. I looked around me, seeing all these children gathered for the same developmental assessment my boys were going for, and the difference was so stark it brought tears to my eyes. I tried to blink them back, but my lip quivered and my nose stuffed up and I had to stomp my feelings down hard to keep from bawling right then and there. I didn’t need the teachers to tell me I was right any more. I could see it. The evidence danced right in front of my eyes.

That talkative little girl I’d met in the hall was the norm. All around me, children pranced and played, talked and sang. Many of them were running around with each other. Others were hanging onto their parents and then, ever so shyly, allowing themselves to be introduced to a new friend. They seemed to make friends so easily! It didn’t matter that those friendships might be as brief as this one afternoon. These children interacted with each other! It might seem strange that I found that so astonishing, but the truth was that I could barely get my kids to interact with me or with each other, let alone with other children.

Oh God, what did these parents do right that I was doing so wrong? I tried! I tried so hard! Nothing seemed to help. I looked at my little ones. They were still crying, though more quietly. I was still bouncing them around in their makeshift ride, too. I had to squeeze my eyes shut just to keep the tears from falling. If they started now…

Excuse me, a lady said in a high, soft voice.

Somehow that voice managed to carry a sense of authority in the vast, noisy room. Where did she even come from? She was right by my shoulder. She looked official with the help of a plastic-covered name tag I couldn’t read without staring at her chest for longer than would be appropriate.

Yes?

I think you might be more comfortable if you come with me, she said.

She led us off to a corner with a clipboard full of papers in her hand. It suddenly dawned on me that we were being pulled out of line to be served before our turn. I looked back, expecting glares from the other parents who surely realized the same thing. I found a face—a woman at least ten years older than myself with two little ones of her own—and saw something unexpected: Pity.

I gulped at the knot in my throat. With that one look, something had shifted inside of me. For so long I had assumed that I was somehow doing something wrong despite my best efforts. I’d only been eighteen when I got married. I’d turned nineteen a few months before Willy was born. Eleven days before Willy’s first birthday, I gave birth to his little brother Alex. It seemed like I’d been met with disapproval ever since. I was too young and too poor to raise two kids.

And that wasn’t even the worst of it.

The back-to-back pregnancies had been hard on my body, so the obstetrician shot a special time-released capsule into my arm that was supposed to provide three full months of birth control protection. Instead, it sent me into a tailspin of the most destructive depressive episode I’d ever experienced. I was so far gone so quickly that I didn’t even realize anything was wrong until I found myself screaming at my newborn simply because he wouldn’t go to sleep while his older brother was napping. I’d had a kind of out-of-body experience in that moment, looking down on myself as I screamed at my newborn baby. I wrenched myself back together and stumbled, sobbing, to the telephone. I called my obstetrician. I explained that something was wrong with me, wringing the words out between sobs. In a calm, gentle voice, he told me to get a sitter and come in right away.

Once I’d gotten help at home and a dose of antidepressants coursing through my bloodstream, I got better rather quickly, but I didn’t recover completely until my three months of purgatory was up. Even though I knew it was a severe reaction to the birth control hormones flooding my body, I never really forgave myself for my weakness.

Somewhere along the way, while watching my children fall further and further behind the developmental charts and seeing how irregularly they would interact with anyone at all, I came to the conclusion that it must be my fault. I’d already messed up my kids and I didn’t even know how! They were just toddlers! This assumption was reinforced by derogatory comments, snide remarks, and dirty looks from strangers and professionals alike.

But with that look—that glance full of pity from a complete stranger—the idea seemed to loosen its hold on me. Maybe it wasn’t my fault. Maybe it wasn’t anyone’s fault. Maybe it was my boys. Maybe they were just different.

Maybe that was it.

The lady led me to sit down in what passed for a quiet corner in the din of the gymnasium. I found it difficult to concentrate on her questions. My children squirmed in my lap. Noise bounced off the walls at our backs. Colors whirled around us as people milled and migrated through the large room.

I had to take myself out of focus, essentially blocking the sensory stimuli surrounding me, in order to hear her properly. It was a trick I’d learned without ever really being aware of it. I would sort of shut off my eyes, my skin, and my ears, focusing on just the one thing. I would tune everything else out with a force of will that became reflexive. I didn’t see her, at least not well enough that I would know her again. She was just a voice: a little too high for comfort—definitely a soprano—with a crisp, vocal formality. It wasn’t so much the words she said, but the way she said them that captivated me. She spoke so crisply and so clearly that I imagined listening to her all day long without hearing one misspoken syllable. Later, I would learn she was a speech and language pathologist, someone who provides therapy to children who have speech and language delays. But there, in that moment, she was just a voice, a lifeline of sound in the torrent of too much stimulation.

She asked. I answered. Slowly, together, we wove a picture of my children’s development that became increasingly clear, intolerably vivid, and most certainly delayed. She tried to engage them. I remember that. I remember them melting like goo. They were like weights straining my muscles until the tissue beneath my skin felt like it would snap. My arms ached, holding them there, not daring to let go for fear they’d run and lose themselves in the whirl of color and sound. I remember her moving her head, bobbing back and forth in front of them, trying to make eye contact, to engage them, to get them to acknowledge her presence. I shook my head, but she didn’t see me. I tried to tell her that it wouldn’t work. But hope stopped my tongue. Maybe it would, part of me prayed. Maybe she could do it.

It would be a long time before either of my boys made eye contact with anyone.

More questions. More answers. She scribbled on a big, yellow legal pad, flipping over page after page as I talked until my mouth was dry. The boys became inconsolable. People came. They consulted. They went. Somehow, it ended. But honestly, after the first five minutes, everything blurred together. It seemed to go on for hours, for days. But eventually it ended.

I needed to schedule an appointment. For the next step, people would come to our apartment and we could proceed in the comfort of our own home. Someone would contact me to set it up.

I loaded the boys back into the double-stroller and pushed through the crowd as politely as I could, urgently trying to make our escape. Once we were a block away from the school, the boys’ cries subsided. Within another block, they were smiling. It was a long, slow walk home, pushing them under trees, in front of houses, past parked cars and barking dogs, across empty streets, then waiting to cross the busy ones while the boys started to fuss again. I sucked in the clear air and felt the coolness blow over me. The sun shone brightly like a doctor’s flashlight shining at my eyes. Yet, somehow, everything seemed so dark. The weight of a storm hung over me, bearing down on me.

Life was about to change.

Chapter 2

Woolly Man

Chaos is a name for any order that produces confusion in our minds.

— George Santayana

William was born after twenty-three and a half hours of labor. My first memory of him outside my womb is of a red-faced, squalling baby who seemed a bit angry over his eviction. He had a nasty red mark on his head from the suction device they used to help get him out of me. I remember holding him, but feeling so weak and tired I could hardly believe it was over.

At the time, he seemed like a normal baby. My biggest worry was that he’d rejected breastfeeding. The nurses had given him sugar water from a bottle in the hospital, and he very much preferred the instant gratification the bottle offered. Formula was expensive. I’d wanted to breastfeed. But we lived with the consequences as best we could.

I remember laying his sleeping body across my belly, with his wobbly head resting on my chest. Our first home was in an apartment complex in a big city. Heat was included in the cost of our rent, but the thermostat wasn’t under our control. The room was sweltering in the middle of December. Willy wore only a diaper, with a light blanket covering him. I had my hand underneath the blanket, feeling the soft, downy hairs covering his back. Mark coined the nickname Woolly Man. He seemed so perfect!

Looking back, however, I can pull out moments where—had I only recognized them for the warning signs they were—I would see something very different. As an infant, Willy was most content by himself. He loved to lay in his basinet and look at his hands, the shadows, the white wall, and the things that moved around him. He didn’t like to be held. At least, that’s how it seemed. If I cradled him gently, like a baby, then he’d squirm and wiggle. So, I would have to hold him more tightly. Then, as soon as I held him firmly, he’d calm right down. He loved to be swaddled. It was as if he resented his flailing limbs, so he needed deep pressure to hold them still. He hated loud or unexpected noises. He liked sing-song voices, even from me, though I could no longer hold a tune. He loved his father’s deep voice. But he did not like when Mark yelled. Mark learned to project his voice from years of singing lessons and he learned to yell from drill sergeants, so he’s very good at it. But the sound seemed to terrorize Willy whether Mark was angry or not.

If I only understood what I was seeing, then I would have recognized sensory integration disorder from the start. But I didn’t know anything about that.