As a society, what are we doing to ensure that children diagnosed today will grow up to have a satisfying life? That's what one mom of a little boy with autism wants to know.
- On my 32nd birthday, my son Liam, then 3, was diagnosed with autism. Initially, I was overcome with sadness, but then I tried to focus my energy on getting him the therapies and enrichments that he needed. Liam was busy and happy, and the future seemed very far away. I wasn't thinking about how much effort and preparation it would take for us to make sure that he would grow up to be a productive, safe, and content adult.
Then, last summer, when Liam was 7, we got a taste of what the future might hold. My husband finished a Ph.D. program and took his only job offer—a visiting professorship that was 2,000 miles away from our home in Wisconsin. We moved to Oregon, leaving most of Liam's therapeutic equipment behind because there wasn't room for it in our tiny new apartment. We also left Liam's familiar routines, his beloved therapists, and a state program that paid for everything from respite to toys. I tried to secure therapies in Oregon, but either no one was enrolling 7-year-olds or if they were, the wait lists were 30+ children deep. The state seemed to be devoting its resources to early intervention (EI) for younger kids. It would take six months to get Liam registered in its disability program, which provided only the most basic services. And for the first time in years, as our student loans came due and I searched for a new job, we barely had enough for food, much less for autism therapies.
The future was here, and I was utterly unprepared.
Our days are now rather monotonous: My husband goes to work and I stay home with Liam and his 5-year-old brother, Eliot. I provide as much enrichment as I can. We listen to books, play at parks, go to the library, grocery-shop, and cook—and I attempt to do some homeschooling with both boys. However, Liam's boredom, his lack of routine and support staff, and his communication frustrations have brought on violent meltdowns and tremendous sleep problems. We've got it tough right now, and we're not alone. We're getting a sense of what happens to many families as their children age out of EI or school programs.
According to the most recent estimates from the Centers for Disease Control and Prevention, 1 in 68 kids have been identified with autism spectrum disorder. Those children (including Liam) will be adults by 2040, and as I consider such statistics I try to imagine what their future will look like. Will Liam have a job or will he be unemployed, like so many adults with autism are today? Will he live at home? Will he be able to express himself, or will he still struggle to make his voice heard and lash out in frustration? Will my husband and I be alive to help him or will his younger brother be responsible for caring for him? Will we have somehow managed to save enough money to give Liam security in the future?
I don't know the answers to these questions, but I do know that research in Pediatrics says that 50,000 kids with autism will turn 18 each year. By 2034, there will be nearly 1 million young adults with autism who no longer qualify for school services. That's a lot of young adults, and we must start preparing and building now in order to give them the future they deserve.
I'm grateful to be raising Liam at a time when autism is a household term and there's a neurodiversity movement highlighting the potential of autistic people. And yet we're not doing nearly enough for the adults with autism already in our midst. Government programs have long waiting lists, job programs are limited and tend to focus on unskilled work, and stigma still surrounds autism. Also, independent housing is hard to get and often subpar, and only about 17 percent of young adults with autism have ever lived apart from their parents, found a study in Autism.
When I consider these realities, it's hard not to despair. To fight my despondency and better plan for the years to come, I've been mulling four questions that all parents of children with autism must consider.
What do I want for my son? We all want our child to live a happy, fulfilling life. When I imagine a content Liam in the future, I see him doing work he enjoys, having a say in where he lives and what he wants, being able to communicate his thoughts and feelings, and being surrounded by people who respect him. None of that seems like too much to ask, but I haven't known how to start helping him toward those goals.
What's being done now? Luckily, lots of other parents and adults with autism are ahead of me on this road, and they've been busy. Katie Cancro, founder of Fill-a-Need Foundation, and Erin O'Loughlin, founder of 3 Irish Jewels Farm (3IJF), are both moms of nonverbal preteen boys with autism. Although they live in New Jersey and North Carolina respectively, Cancro and O'Loughlin are working along similar lines, and their projects have me thinking about what I might be able to create in my home state.
Cancro hopes to build a self- sustaining green campus, called "The Hamlet," which will offer a vocational and therapeutic day program for adults with autism and other special needs, providing opportunities for them to hone social and life skills. The Hamlet will ideally include stables, a plaza, and green space. Cancro envisions it being used for shopping, dining, concerts, and other family-oriented events—not just for program members but also the local community.
I love that idea of bridging the distance between local communities and adults with disabilities. What a great way to raise awareness and truly practice inclusion. I also appreciate what Erin O'Loughlin is trying to do as she expands 3IJF from its current day-camp program into a residential farm.
I asked Julia Bascom, executive director at the Autistic Self Advocacy Network (ASAN), about projects she believes are making a difference. She pointed me toward advances in "supported decision making" (SDM), which offers an alternative to having parents (or another responsible adult) named permanent guardians and instead allows a disabled adult to make a life choice on his own, with appropriate support. Legislation varies by state, but SDM is being carefully studied to explore its impact. Bascom told me about the work of the national organization Think College, which helps adults with intellectual disabilities find higher-education options. ASAN is also helping families navigate changes in health care as kids get older. These are all resources I'll utilize as Liam moves into adolescence and adulthood.
What else can we do? We need to focus more on communication, so that autistic kids can advocate for themselves and articulate what they want in the future. We need job programs that help people with autism utilize their gifts and strengths, not just have them doing menial labor in dreary conditions. We need to support parents at all stages of their kids' lives, not just during the early years. And we need to remember that interdependence is not a bad thing. We all depend on others.
What does all this mean for my family? In a few months, we'll move back to Wisconsin so we can be closer to our relatives and friends. I hope that Liam can work on communication during daily sessions with a certified Rapid Prompting Method therapist and reenroll in state programs and his familiar enrichment activities. My husband will research laws and programs for teens and adults in our state so we know what to expect. We both want to get more involved with projects for adults and teens.
I'll continue to build relationships with autistic adults both online and locally so I can see models of what Liam's future might hold. One inspiring example is 26-year-old Nat Batchelder, who won his day program's Employee of the Year award. "Nat takes care of the shopping carts at a local supermarket—a perfect job for him because he has that autistic focus, that deep need to put things where they belong," says his mother, Susan Senator, author of the new book Autism Adulthood: Strategies and Insights for a Fulfilling Life. "He also doesn't have to talk to anyone, and he can walk around outside a lot, which he loves to do."
The day Nat won his award, Senator admits that she had mixed emotions: "I could barely sit still. I felt great, of course, but I wondered how much Nat understood. I felt that familiar sadness for him, the never knowing how he feels about his own life. But when I watched my son stride up to the podium, there was no doubt that he appreciated this honor. He stood still and listened, shook the director's hand, and took pictures with us. In every one, he is standing up so tall that he's almost leaning backwards."
Encouraging stories like this motivate me to focus on our goals for Liam's future—community, choice, communication, and independence along with interdependence—during every moment of every day. Sometimes I wish for a crystal ball that will tell me everything will be okay for Liam. Many nights I still lie awake with a knot in my throat and silent tears pouring down my cheeks, utterly consumed by my fear for what the years ahead might hold for my precious boy.
But then morning comes. My fear is replaced by hope, tangible plans, and the faith that we as parents, as communities, and as a society can—and will—build a better future for Liam and the millions of other kids and adults like him.