Andrew, Himself

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% 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 scrambling to fill long, icy, dark winter days. The library was my best bet. But on this particular afternoon, my nearly-four-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 Rainman—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 sacrilege.

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. Throughout high school, 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, Rhode Island, 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 yesterday 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.

But my response to the news is a litte more optimistic. 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 a 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 chronic 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% 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 adults sons still living with them. (The rate remains 4-5 boys for every girl.) They are retired school teachers 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 consider 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.

Comments are closed.

15 Responses

  1. A great portrait! It does look like him. At least the last picture I saw.

    Even I’ve become more aware of this Autism and Asperger business. As I understand it, for some it is disabling. For others, a gift. For others, well, it just makes them a little odd. For many others, it’s all of the above, or none of the above, or a and c above: you know, the profs who get lost on the way back to their offices, or in some project or other. Or maybe a painting. It is interesting.

  2. Spotted this first on Salon but I refuse to leave comments there because so many of the commenters are crazed harpies — so I came here! You cover so many good points in this piece…the vortex that special needs issues can become; Mother-blame, doom-saying, even still; too many labels and statistics, not enough emphasis on how to care for these kids when they’re older…I love the level-headed philosophy you’ve developed about parenting an autistic child, and how you cut you and your (grown) kid some slack. Great post.

  3. Amy Harrison says:

    What a great and truly insightful piece of writing. I, too, first saw this on Salon.com and don’t comment there, but I am glad to be able to comment and tell you how wonderful it was to read your post. Your friend the anthropologist is right–too many of the mothers in the world are focused on making motherhood their starring role, rather than accepting a supporting part as someone witnessing the journey of their children developing into adults. And for some, perhaps raising kids with autism or other special needs can exacerbate that need to make it all about themselves and the special cross they bear.
    The world needs all kinds of people, “typical” and not so typical. Your Andrew seems to fill that need of the world quite well with his art and his own way of being. He obviously has the support of a remarkable mother.

  4. Aarthy says:

    Good work! Honestly I dont know who to congratulate. Mother or son ? Mother for giving such a thoughtful information on how to be a mother to a son who has health issues Or son who has beaten up all the odds and flowered into a talent young man. Kudos to both of you!

  5. Emese says:

    I saw the article on Salon, and I just wanted to applaud your outlook on parenting a child with autism. My brother, now in his late twenties, displays all the symptoms of autism. My parents, being hippies, never sought a diagnosis. When I put two and two together and came up with functional autism, I was enraged. How could they not have wanted this label and all the associated advice and accomodations? My mom said “sometimes it’s hard to use a label,” and I forgave them. Reading this, my understanding of parenting autistic children has deepened; they gave and continue to give him the best care they can, and talked to the special ed worker at school about his specific issues. While labels are useful shortcuts and bind people with common challenges, not using one- or using one, but not letting “parent of an autistic child” become one’s identity- are viable options.

    Thank you.

    Thank you.

    Thank you.

  6. Kit Naylor says:

    Another lovely piece of writing, Ann. Marvelous! You’re one of the best, most dedicated mothers I know. Bravo.

  7. Priya says:

    Love your perspective. And I absolutely agree with everything you say. I am lucky in that I am in a time where autism is becoming less and less of a pejorative, and I live in a state where I am able to get great services for Nik. My son is 7.5 years old, and I am in the early stages of a divorce from my husband. Again luckily, I have a great job and so am able to support my children without child/spousal support (after 15 years of marriage, I could ask for a lot more, but haven’t), because he is fighting me on everything. My career/life in general is improving because my husband has left…isn’t that funny/sad?

    • Ann Bauer says:

      I think it happens fairly often, Priya. But a good woman forges ahead to make her situation better. I checked out your site and it’s clear you’re doing just that. Good for you!! And thanks for writing.

  8. Sarah Fuoto says:

    Thank you for writing about Andrew. His four-year old self perfectly describes a child in my pre-school class, Benjamin. Like Andrew, he needs to run and spin. Also, he uses the alphabet to sooth himself by holding an alphabet block in each hand and yelling the alphabet song non-stop. My fellow teacher and I have found some methods of calming him: turning on a tape of songs he likes, holding and spinning him, and, during circle time, rubbing his lower back.
    We are going to have to have a meeting with his parents and break the news that Benjamin does need special help. They seem very focused on the fact that he is intelligent and, therefore, will “grow out” of his behaviors. He may be able to operate his dad’s ipad, but he still does not know what a toilet is for and does not interact with his classmates.
    My plan for the parent meeting is to also discuss the wonderful things that Benjamin can do in addition to the discussion of having a specialist look at him. (He is the best in the entire pre-school at ball playing and running. He is the best at learning the alphabet and numbers. I do think that he is beginning to teach himself to read his favorite Dr. Seuss books. And he has a beautiful smile. Any day Benjamin runs to us and gives us a hug is a great day.)
    Do you have any advice for how I should discuss this with his parents? What would you have wanted to hear from Andrew’s pre-school teachers?

    • Ann Bauer says:

      Dear Sarah—

      First, I want to say that every parent of a preschooler (autistic or not) hopes for a teacher like you. Regarding your question, I have only this advice…and I strongly suspect you don’t need it. But here goes. Never put limits on what a kid like Benjamin can do. When my son was four, the educators and therapists we spoke to said things like “He’ll never go to college,” and “He’ll never get married,” and “He’ll never be able to live on his own.” I know they were trying to be helpful–quelling my hopes so I wasn’t disappointed. But I found all this crushing. In grade school, I was told: “He’ll never learn to read.” Then he did! The teachers who believed in him got marvelous results. All of Andrew’s life, I’ve watched this happen. People who put limits on him do so much damage; people who refuse to assume lift him and open doors. When Andrew was 18, a group of doctors and social workers decided he was mentally ill. They put him in a locked facility and controlled him 24 hours a day and pretty soon he was angry and dark and acting like the person they said he was. It was a terrible time. But then two amazing people–a psychiatrist and a guardian–stepped in and said, “You’re wrong, he’s absolutely fine.” They took Andrew out of that place and gave him choices. They told him he was talented and encouraged him to pursue what he wanted. Today, we’re talking about my son starting college. I’ve no doubt he’ll some day live on his own. I suspect, given time, he’ll marry. I sense from your note that you don’t need to hear any of this–that it’s exactly what you’ll do when the time comes. But that’s all I have to say: Believe in possibilities. I wish someone had told me that when my son was four.

      Yours,
      Ann

  9. Carly says:

    I’m afraid your experience of autism is quite different from mine. My son is 10, nonverbal, severely delayed with a sleep disorder. Taking care of my son the way he needs to be cared for does define my life right now. There is not enough money or hours in the day for me to do it differently. But regardless of level of need, you really don’t have any business judging people who parent differently, and accusing them of using their kids to “not do other things.” What would possess you to randomly and openly criticize women for making different choices than you have? I’m astonished, and I think you owe lots of people — who, by the way, are not judging you–an apology. I’m just incredibly disappointed.

  10. Sheku Samba says:

    Hi Ann!

    I am highly impressed and moved by your bravery to courageously share with us the agonies you have endured as a true mother who ever remain resilient to see her child travel the safest path. I know you will never forget the routes you have travelled with Andrew starting with the unprofessional and inpatient library story teacher. It is only the hearts that cares for humanity knows the sorrow and mind’s torture you have endured. Your presentation reinforces the old- aged notion of motherly love which is never ending even when the tide is against you (like divorce). I happen to know your son, Andrew for over a year now as a friend. He is intelligent, friendly, quiet, and a man of few words but exact to the point. What I admire about him is his love and concern for his family. He enjoys having fun with them and interestingly enough they all love and care for him. When you are around Andrew you will easily use to phrases like “my maternal grandfather, my maternal grandmother, my paternal grandmother, and paternal grandfather, my sister, and above all my mother.” These phrases are put together as a result of their intimacy with him. I have never seen the love of grandparents more than those of Andrew. All these have made him strong, confident, and hopeful. Based on my knowledge about him, he is more independent than people think of him. I could recall when he was heading to the airport for Seattle alone to his mom and he said to me “this is one of my happiest moments.” Please mothers, be like Ann and do not succumb to the negative views of others about our children. If Ann was going to yield to such views, Andrew would never have been like this. Don’t give up!

    Sheku Samba (Andrew’s Friend).

  11. Gayle Lin says:

    I’m so moved by this essay. I don’t have any children with autism; mine are all grown and settled now. I can’t help but wonder if I’d have had your insight and determination. You write so well and your posts are so informative.
    Thank you for this.