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A game-changing exploration of what the future holds for the first generation of mainstreamed neurodiverse kids that is coming of age.
After sleepless nights, intensive research, and twenty-one years of raising a child, Ethan, with autism and intellectual disability, Cammie McGovern is approaching a distinct catch-22. Once Ethan turns twenty-two, he will fall off the "Disability Cliff." By aging out of the school system, he'll lose access to most social, educational, and vocational resources. The catch is this: These resources, limited as they may be, have trained Ethan in skills for jobs that don't exist and a life he can't have.
Here, McGovern expands on her #1 New York Times piece, "Looking into the Future for a Child with Autism," a future that often appears grim, with statistics like an 85 percent unemployment rate for people with ID. McGovern spent a year traveling the country and looking at the options for work and housing--and to her surprise discovered reasons to be optimistic. She asks the tough questions: What should parents prioritize as they ready their children for adulthood? How do we redefine success for our children? How can we sustain a hopeful attitude while navigating one obstacle after another?
As Ethan makes his way into the world, McGovern also looks into the hardest question of all: How can we ensure an independent future when we're gone? Hard Landings will serve as a renewed beacon of hope for parents who want to ensure the fullest life possible for their child's future.
Joseph Heller coined the term "catch-22" to describe a military conundrum: a terrified fighter pilot seeking a discharge from armed services on grounds of insanity is declared sane enough to recognize the danger he faces and therefore must keep fighting. The phrase has come to symbolize the absurd vicissitudes of institutional logic and is extraordinarily apt for the generation of young adults with intellectual and developmental disabilities (IDD) coming of age in America today. For Heller, the number twenty-two was arbitrary. For these young adults, it isn't. Twenty-two is the age when they'll leave their school system and lose access to every educational and vocational support they've had since they were three years old. In many states, their twenty-second birthday will mark the last day they have anywhere to go. For nineteen years, they've been part of a system designed primarily around the philosophy of inclusion. They've participated in classes and school choruses; they've gone on field trips; they've learned how to comport themselves in a community that-they will soon discover-has no place for them. The catch is this: they've trained for a life they can't have. They've learned skills for jobs that don't exist or they'll never get. They've practiced independent living but they'll never live alone. Parents describe this moment as "falling off a cliff" without even realizing the worst part-their kids aren't really falling because they aren't going anywhere. They're sitting in their parents' house, waiting indefinitely.
Every parent of an autistic child can tell you something about making lists. In the early days after Ethan's diagnosis at the age of three, I made them compulsively: words he understands, words he uses regularly (only a handful at that point), songs he can sing at least part of. I also had lists of goals, composed in bursts of optimism, for what he'd be doing soon: six months from now he will count to twenty, follow two-step directions, tell a stranger his name. At the time, I believed these lists kept us focused, with our eyes on the prize that I made our number-one "parent goal" on Ethan's first preschool IEP (individualized education plan): "To enter kindergarten without an autism diagnosis." That was my thinking during our early years in the autism trenches, before we'd learned how complicated and knotty the battles could get.
Ethan was diagnosed just after his third birthday by a gruff doctor with a thick accent we had a hard time understanding. At the start of our appointment, we'd tried to put his developmental delays in the context of a larger picture of medical issues: He'd always been a colicky infant, so prone to sinus and ear infections he seemed to wean straight from the breast onto amoxicillin. He'd had food allergies, terrible eczema, and for the last year and a half, diarrhea so severe we'd never bothered to start potty training.
"Yes, this is autism," said the doctor, who seemed to be missing a few social skills himself. "The first thing you must do is lower your expectations. Don't assume he'll get a job. Hope that he can do a few things independently-get dressed, feed himself, things like that."
I was outraged, of course. Ethan was three years old, and this doctor was already outlining his limited future? My fury dissipated after I did some research and discovered that over half the children diagnosed with autism had experienced chronic ear infections and gastrointestinal issues. The more I read, the more this diagnosis seemed less like a tragic pronouncement on Ethan's future than a thrilling explanation for the constellation of GI problems he'd had all his life. Here at last was a connection, and with it a ray of hope: there were diets to try, therapies to get started on, children like him who were improving physically and catching up on missed developmental milestones.
I read every story I could find of an autistic toddler who'd recovered completely: the nonverbal four-year-old who went from lining up cars to reading Harry Potter; the teenager who'd left his diagnosis behind and now had a girlfriend and a software-design company. In these stories, parents described the extraordinary effort required and made it clear-this wasn't an undertaking for the faint of heart. These children will resist being drawn out of their shells; they'll turn over tables or try to hurt themselves. They were right, I learned, and my heart broke as I watched Ethan resist-sometimes sobbing for hours-much of what we were trying to do.
In the beginning, I returned to those stories of cured children often. I needed them because suddenly I had a full-time job I'd never applied for or wanted. I baked every night with the grains that would not aggravate his immune system. I lined up playdates, joined support groups, made flash cards and posted them around the house to surround him with language in manageable doses. I played on the floor till my knees ached teaching Ethan the rudiments of pretend play: "Should we make this banana a phone or a car?" (Early on I'd learned to ask a question with choices buried in it, so an answer was right there for him to grab.) I narrated his world as he encountered it and I stopped thinking entirely about how I looked because what did that matter when there was a child to be saved and this was what it took?
My notes from those early years after Ethan's diagnosis speak volumes to my relentless optimism. In one list I detail goals for the next six months: "Identify four parts of the body. Identify four items of clothing. Name a friend." On that same day, I apparently felt some need to make another list: "What he can do: Name all the instruments in the orchestra. Identify Mozart. Identify eight out of ten of the greatest guitarists of the twentieth century." Reading this now, I easily see how I was grasping at straws, trying to imagine our own future story: He will beat this! Someday when he is a professor of music, we'll look back and shake our fists: Autism! Ha!
You need great hope to keep your energy up when every day is a battle to lure your child into joining the world. Most days, I felt like I wasn't myself: I hovered closer than other mothers on the playground and talked like a nervous preschool teacher on her first day: "Here we go up, up, up the slide!" If strangers at the playground didn't notice Ethan's differences, they certainly noticed me, singing in the sandbox, clapping my hands to get his attention. One glimpse at a photograph from that time is enough to recall my omnipresent unease. I look as if I'm wearing a mask of my own face. There's an irony to the arguments I had with my husband and my well-meaning mother who would gently suggest that I relax for a while and leave Ethan alone. I wanted to scream, I can't relax! I've got to teach this child how to play!
Now I look back at my determination for Ethan to achieve a full recovery and see all the ways I did us a disservice. I allowed a perpetual cloud to shadow the small breakthroughs Ethan did have: Yes, he was talking in sentences now, I would tell myself; yes, he tantrums less at transitions but (there was always a but . . .) why does he still repeat so much? Why does he still jump and flap his hands? Why did he still look so autistic?
The answer, I eventually learned, is simple. This is the way autism works. There are roadblocks in the brain, mysterious and intractable, and for some children no amount of work or determination will change them. Eventually I began to see those stories of cures as addictive and dangerous. Statistically, "recovered children" are a minuscule fraction in the exploding autism population, but their tales fuel a cottage industry of therapies peddled to desperate parents who will do anything to rescue the child they believe autism has taken from them. Not only are these unlikely to work, they set up a struggle that, after a while, begins to break your heart. If you prioritize "full recovery," you must decrease and eventually extinguish all the autistic give-away behaviors: the jumping, the hand-flapping, the repetitious echolalia. "Quiet body, quiet hands," you whisper in public. "No rocking. No repeating," you say so often you feel like a broken record yourself.
At some point it hits you. You look at your child and realize you're not fighting the autism anymore, you're waging a war against the fundamental person your child is. If you hate his bouncing and his squeaks and his flappy hands, that's the same as hating the things that make him happy because these are his purest expressions of joy. Most of the parents of autistic children I've known have gone through this process. They've exhausted themselves for years and then, they've laid down the battle armor and called a truce. This is my child, their heart tells them. My funny, quirky child. I'm not going to fight this anymore.
Ethan was about eight when this shift happened for us. By the time he was ten, I was so convinced of my earlier folly, I was proselytizing the need for more honest and better clarity around the issue of autism recovery. "I've never met a child who has recovered from autism," I wrote in the New York Times in May 2006. "I'm sure it happens but less often than we are led to believe. I wish more parents were told this more clearly from the start. Children won't recover, but they will get better. And better is a lot."
At the time I wrote that, "better" for us meant a week going by without needing to pick up Ethan from school following a meltdown or a bathroom accident. Better meant he had four accidents a week, not twelve. Better meant going out to a restaurant and making it through an entire meal. When you've been living for years on high alert, feeling as if your nervous system is plugged into a wall socket, "better" is a twenty-four-hour break from that.
In the years since then, much has been written about accepting our neurodiverse children but far less is out there when it comes to the second great battle most parents will face: helping their older child with autism (or any other developmental disability) find a job, housing, independence and a life. "I don't want to think about that," I used to say when someone asked about "life-after-school" plans for Ethan. "We're focusing on other goals right now." Say (or even think) this often enough and a shroud of silence falls around the topic. As your child ages, the unknown grows more ominous. Suddenly you really don't want to pull back the curtain and look at what might be your very worst fear: your child who has come so far from the difficult, unreachable toddler he once was-who is now social and part of a school community he loves-might have nowhere to go and nothing to do.
Just before Ethan turned twenty-one, I published a piece in the New York Times about our final IEP meeting and the difficulty we were having envisioning a full and happy future for him. After four years of vocational placements that had all ended in varying degrees of failure, we were planning his last year of school-based services before he transitioned into adult services, which aren't guaranteed in most states but are in Massachusetts for those with IDD. The article prompted an outpouring of responses in large part, I suspect, because we'd arrived, at least for the moment, at an unexpectedly peaceful place. Ethan had surprised us by becoming a better worker at his supported farmhand/landscaping job than we ever expected. Even more surprising, after years of believing we were solely responsible for planning his future, he'd written his own vision statement (with the help of his vocational coordinator). In it, he said, "After I graduate from high school, I plan to work at Prospect Meadow Farm until I retire and live at home with my family. I'd like to keep taking music classes at Berkshire Hills. For fun, I want to go to our cabin in Vermont, mow lawns, and collect business cards." In other words, he was saying: I want my life to keep looking the way it does now. By writing this out, he showed us, very clearly, that this was his life and he would have a say in it. It was a glorious moment-one I never would have envisioned in the darkest days of Ethan's early childhood, when we struggled so mightily to teach him language and play.
A stream of responses from readers became a flood after Dan Rather reposted it on his Facebook page, saying he "saw not only the struggles of a family, but also an echo of our times. Will we reach out to each other with empathy and understanding? Will we embrace the possible? Will we put in the work and open our eyes to welcome the goodness and worth of others?"
Judging by the notes I received, Rather was right: the piece resonated beyond the community of parents of children with special needs. I heard from hundreds of folks with children who had no diagnosis but were still struggling to find a "future vision" for themselves. They appreciated the reminder that if we give our children the space and time to find their own way, they usually will. I did notice one recurring theme, though, in the letters from parents of children with special needs: the story zeroed in on a truth they'd all experienced but hadn't known how to talk about. Over and over, I read about an adult child who had managed school well but hadn't found "her place quite yet" or "a job that will keep him." "He's twenty-seven now and still looking for work, but we haven't given up yet!" one father told me. Or this, from a mother in her seventies: "My daughter is almost forty-five and she's still doing what she's always done: one afternoon a week at our animal shelter. She'd like to do more but we're not sure who to ask. Ethan's story has fueled me to keep trying."
These stories haunted me. I knew, all too well, that Ethan's story was only beginning and the issue of a child with IDD transitioning to adulthood is more complicated than one article can convey. Now that Ethan has stood on the cliff we've dreaded all his life, I've finally looked closer at what lies ahead and it's not a happy picture. Our system of vocational supports and social services for adults with developmental disabilities is, in many states, shockingly behind the times. The history of institutionalization and segregated education of people with IDD is more recent than I realized and both outmoded systems cast woefully long shadows. By comparison to thirty years ago, when many of us attended school without ever seeing a child with IDD, times have changed, though maybe not as much as one might hope.