The new autism reality

The recent stats may seem scary. But as a mom who worried in solitude, I know there's hope in not being alone

Topics: Autism, Real Families, Life stories, Motherhood, Parenting,

The new autism reality (Credit: ZouZou via Shutterstock/Salon)
This story was originally published on Ann Bauer's blog, The Forever Marriage.

The first person I ever heard call my child “autistic” was the story lady in the children’s section of the Duluth Public Library. January 1991.

My young husband and I had moved to the Iron Range for a number of romantic reasons. We thought it was beautiful and in some way more “authentic” than the place we’d been living. We also believed the clean lake air would cure the asthma suffered by our younger son. What we failed to take into account was the 14 percent unemployment and a taconite-weary city with little but service work.

So Jim was stringing together two backbreaking, low-paying jobs and I — the 24-year-old mother of two — was trying to fill the long, icy, dark winter days. The library was my best bet. But on this particular afternoon, my nearly 4-year-old was behaving oddly. He wouldn’t sit with the other children for story time. He kept flapping his hand in front of his eyes. Twice, he jumped up and went to the wall, where he flipped the light switches madly back and forth.

I was in the stacks looking for books and swaying my baby in his homemade sling when the story lady marched up, pulling Andrew by one hand. “This child is no longer welcome at story hour,” she said, pushing my son toward me as if he were a distasteful meal. Then she headed back to the waiting group of normal kids, but turned and said over her shoulder. “You better get him checked out. I think he might be autistic.”

In that moment, the sinister, sub-zero wind from outside entered my bones. The word “autistic” was monstrous. I wasn’t quite sure what it meant but it evoked for me something haplessly and forever broken. Part crazy, part retarded. Entirely lost and never to be found.

I had seen the Dustin Hoffman movie “Rain Man” — while I was pregnant with Andrew, in fact. Thank God, it came out the year he was born. But this was everything I knew about autism. Not a soul among my family or friends back home had ever met an autistic person. When I used the term they flinched, as if I’d said something sacrilegious.

Eventually we moved to Minneapolis, where a few people did know autism. Still, I watched as Andrew went through kindergarten, the only child in his class who could recite the letters of the alphabet both forward and backward. Also the only one who needed a rocking board to sit on during the morning meeting. At recess, he stood solitary on a knoll overlooking the other children as they played, like some scientist come to study a completely alien kind.

Through grade school and junior high, he was the only one. Because it turned out he wasn’t retarded; he was perfectly capable of learning math and science. The things he couldn’t do were random yet essential: hold a conversation, choose something to eat from a menu, focus on a teacher’s voice among the maze of classroom noise.

For years, I rejected the label. Yes, he stimmed and rocked and flapped. He had an absent sort of presence; you never knew when he was actually attending. But Andrew was verbal and he made connections to people. He played a mean game of chess. How was he different from Hasidic Jews who rock and mutter, or professors who get lost on the way back to their offices after lunch?

Finally, when Andrew was a teenager and things got awful, I capitulated. The label opened doors — maybe too many. My son got services he needed, as well as treatment that I believed then (and believe still) was unnecessary. Yet he still moved alone through the world, the only one of his high school class to wig out before graduation and spend three months paralyzed and mute. The only one to move from his parents’ home into a group home.

He was — and this part still gives me hope — generally liked by his classmates, but had no clue how to relate to them. Andrew had only one carefully arranged date. Facebook struck him as useless. He was left with shards of clear memories but no sense of community. Because he stood, as on that knoll in kindergarten, utterly alone.

- – - – - -

Andrew is 24 now. He’s an extraordinary painter, working at a gallery full of artists who are like him … and artists who are not. He lives in a home with three other young men, one of whom shares his talents and eccentricities. They play basketball on the weekends. Andrew is a fierce and highly rated player on the circuit for tournament chess.

I can finally use the term “autistic” without feeling that sweep of chill from the Duluth Library. But I do it only out of laziness and expediency. He’s really just Andrew. This is his life.

When I read stories about autism (and there have been plenty this week) it’s like reading about a city where I once lived. Providence, R.I., for instance. Their headlines catch my attention and I feel a tiny pull: Those are my people, too. But they really aren’t, of course — haven’t been for years. So I move on.

Nearly all the news and research about autism is, frankly, beside the point for my son and for me. It’s lasered in on babies, on “early detection,” on causes, rates, costs and sweeping societal changes. But if one thing is clear, it’s this: These kids and their families, no matter where they fall on the spectrum, are no longer alone. Chances are, mothers know other mothers in their very own neighborhoods who are implementing identical gluten-free diets and cutting the tags out of their kids’ clothes. The library story hours are prepared for these children; they welcome them and provide special rocking boards.

When the CDC announced recently that one in every 88 children has autism, some parent groups remonstrated. They’re worried that the continually broadening criteria will dilute services for people who are really in need. Or (and I’m speculating here), they’re resentful that the specific burden they’re carrying is being minimized by those whose situation is not nearly so dire. Parents raising mute teenagers who can never be toilet trained may not want to share a diagnosis — and social service dollars — with those whose computer wizard boys seem a little “Asperger-ish.” Which I can understand. And I feel for their frustration.

But my response to the news is a little more hopeful. If one in 88 among us is this way, it makes autism seem a little less terrifying and abyss-like and a little more like something that just happens in life.

Today, when people ask about my children, I tell them my oldest has autism and the vast majority nod without horror. They act like I said he has Crohn’s disease or some other lifelong but manageable condition. They ask if he’s going to college, if he’s married, what he does for a living. With the “creep” of this diagnosis has come a welcome acceptance. My son, like a lot of people, is struggling with something difficult. But he’s doing so valiantly, and it doesn’t define him.

It certainly doesn’t define me.

I must admit that the other big autism news from this past week — an article in the journal Pediatrics that said mothers of children with autism earn 56 percent less than mothers of “typical” children and 35% less than mothers of children with other disabilities — really, well, pissed me off.

My first novel featured a character with autism (or something like it), so I’ve met plenty of mothers. They come to my readings; they write me letters late at night. All in all, they’re an interesting lot.

I particularly like the older moms, the ones who were raising kids with autism back when I  was still a kid. In the ’60s and ’70s, practically no one knew the meaning of the word. And those who did likely as not adhered to the Bettelheim theory that the mother was to blame. Yet these ladies — the ones I’ve talked to, at least — forged on and lived heartily. Many of them have adult sons still living with them. (The rate remains four to five boys for every girl.) They are retired schoolteachers or secretaries. And autism was a burden, yes, but it did not completely dictate their lives.

I was divorced when Andrew was 12; my younger children were 9 and 5. My ex-husband did not pay child support — not out of any character defect on his part, but because his income wasn’t sufficient. So I made my way — working like crazy, screwing things up, moving too many times, not paying enough attention. I was far, far from the perfect mother and there are so many things I ache to go back and change. But I lay none of that at the feet of my son.

Nor do I ascribe my income, or lack thereof, to my kid.

I can attest from experience that divorce is rampant among moms of children with autism. And that’s a huge factor in women’s income. At the same time, one of the coolest women I know is the single mother of a teenager with cerebral palsy, autism and bipolar. She attends to her son solo more than half-time. She’s also one of the most successful securities brokers in town. Her clients start investing at a million and a half.

Granted, we’re only two women. Hardly a representative sample. But as I said, I’ve met literally hundreds of mothers in my travels. And here’s what I’ve observed.

There is a large group of women with kids on the spectrum so riveted and driven by the condition that it consumes their lives. They identify themselves as “autism advocates” on their Facebook pages. They attend government panels and testify. They refer to their children’s caregivers as their “staff.”

And they befuddle me.

Because my impulse is — has always been — to insist that my son exhibits just one of the myriad ways to be human. I don’t want the government categorizing him; nor do I want the bureaucracy deeply involved in his day to day. His teachers, caregivers, resources and therapists are not mine. They’re his. He’s leading his life bravely and with an amusing tilt that adds oodles to this world. It’s up to me to live mine.

Worried that I was being narrow in my thinking, I spoke to my friend Kate Barrett, a cultural anthropologist who taught at Stanford. She had a slightly different, but enlightening, take on the stats.

“I think this has less to do with autism than it does with a greater shift in how we parent,” Kate said. “Parenting today has become an acceptable out, what we call a ‘master identity.’ It’s become a way we don’t do other things in our lives: whether it’s fashion, whether it’s work, whether it’s romance, whether it’s fitness. Being a parent — especially being a mother — becomes an acceptable excuse for not doing other things.”

Put the two things together: the wind tunnel of autism, its skyrocketing rates and all its special treatments, diets and educational plans, plus the tendency to locate the role of “mother” at the center of everything. It is, as they say, the perfect storm.

- – - – - -

Perhaps it’s just me, being contrary. But when I put together the swirl of talk and data about autism, it feels as if we’re getting closer to a fundamental truth. People are odd and imperfect and random — particularly the interesting ones — and there is an urgent need for us to make room. Expand our definitions. Soften our lenses a little. Love unstintingly without becoming obsessed.

It’s taken me 20 years to learn these lessons and I have to learn them over and over again. My best teacher is my son, Andrew, who said to me when he was quite young, “I need to get you off from hanging on my back.”

He is stoic these days, telling me little. Which is appropriate for a young man his age. What he does in his spare time and with whom — it’s not really my business. I’m grateful that he still wants to meet me for coffee at least once a week.

In a wonderful bit of kismet, my office is about four blocks from his studio. And though I try not to abuse the privilege, I will sometimes walk over to see his new work. On Monday, he showed me the self-portrait he had painted, which not only looks like him — but somehow conjures up his spirit. He is serious but not unhappy. Magnetic, however silent. And yet alone. Himself.

Ann Bauer is the author of three novels, including "Forgiveness 4 You," which the Overlook Press published this month. Follow her @annbauerwriter

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