Every single one of us wonders what will happen to our kids once they leave the safety of home. We hope they grow up healthy, live independently, find happiness — but really, it’s beyond our control. That’s the ultimate gamble of parenthood. And for parents of a child with a disability, that worry is even greater.
In the United States, 1 in 54 children has autism spectrum disorder, according to the Centers for Disease Control and Prevention. Thirty-one percent of those kids have an intellectual disability, too. But more than half of kids with autism remain unemployed or unenrolled in school in the two years after high school. Roughly half of young adults with autism have never held a paying job. Many of these young adults also age out of school-based autism services and also struggle to find health care.
What happens next? Hadley, Mass.-based author, disability advocate, and parent Cammie McGovern confronts these questions in her upcoming book, “Hard Landings: Looking into the Future for a Child With Autism,” out on Aug. 24. She draws from personal experiences raising her 25-year-old son Ethan, who has autism and intellectual disabilities, as well as from traveling across the country researching social, educational, and vocational resources.
What would you like to get across with this book that hasn’t been covered enough?
I think we talk in the autism and developmental disability world a lot about childhood and therapies directed for young children. I don’t think we talk nearly enough about the long-term, aiming for the happiest adulthood possible.
I was just as guilty of it when my son Ethan was young. I didn’t want to think about adulthood. I was strictly focused on school goals, and I almost didn’t consider what his adulthood would look like. This is letting parents know now that we’re here. It’s what I wish I had known back then, which things I’m glad we focused on, and which things turned out to be not so important.
And also there’s some reassurance, hopefully, about what the options are and the different ways adult lives can look for someone who has not recovered from autism or isn’t miraculously finding their way into a job and a career and getting married and all of that. There are still many ways to have a happy, full life.
You talk in the book about a “disability cliff.” What is that? What happens when autistic kids hit adulthood?
The federal government guarantees services until our kids, in most states, turn 22 — in a handful, it’s 21. That means these guys have someplace to go and a whole lot of attention and therapy and services until their 22nd birthday. In some states, they have nowhere to go at all after their 22nd birthday. This is important for people in Massachusetts to know: In Massachusetts, you’re still guaranteed adult funding if you qualify for day programs. In other cases, you’re put on a waitlist, and in many cases, those wait lists can be seven to 10 years long. And that means that these kids who have made all of this progress spend their twenties waiting back at home with their parents on a sofa to then go back into some kind of program. They regress and lose this precious ground that they’ve spent 21 years at school gaining. It’s really a tragedy that the country needs to face.
As a parent, what’s the most challenging aspect of having an adult child with autism? None of us ever fully stops worrying, no matter what the situation is with our kids.
The first and second goal for anybody approaching adulthood is the hope that they will find community-based jobs. The hope is that they will get a job working in a McDonald’s or a CVS or something like that. The vast majority of federal and state money is going into helping young adults do that. It’s improving slightly. We’re getting a little bit better. But we’ve still got a long way to go. Let’s say about 80 percent — probably of our most severely disabled — won’t find a community-based job or will only find one for a few hours a week. So what are they doing the rest of the time? That’s where these day programs come in, and there’s a wide variety of them. Parents should be already looking around with their younger child to see what those programs look like.
The other question is independent living. And, in Massachusetts, that’s often small group homes or adult supported living or adult foster care, where you live with somebody else. You have a roommate who gets a small stipend. Those are the two challenges: figuring out where they’ll live and what they’ll do for the day.
What do you hope parents learn from reading this?
My hope is to offer a reassuring look at what I’ve seen. I traveled around the country and looked at a huge variety of programs out there. I figured out that there’s a lot of different things happening in different states. In Massachusetts, they have been very good about wanting to make sure everybody gets services, but they have also been very cautious about not wanting to go back to anything that feels like congregate settings. They have not wanted to put people together in intentional living communities, or in larger residential settings, because there’s a great fear, justifiably, of going back to institutional settings.
When I’ve traveled elsewhere, I’ve seen some wonderful communities. In Massachusetts, they don’t allow this, but in Florida, they’ve got communities that kind of resemble retirement communities. It’s 120 people with developmental disabilities living together with less staffing and support than would ever be allowed here, and it works. It was really eye-opening to me. There is a path, and our kids can and will eventually live independently, and there are some ways to do it.
There’s also some wonderful work opportunities, where entrepreneurs have started businesses with the goal of employing autistic adults. One of them is recycling computers, and that’s being done in a few places but not yet Massachusetts. Another is a series of car washes in Florida called Rising Tide. They employ autistic individuals, they start at minimum wage and move up, and these are successful businesses that use the strength that autistic employees bring to bear.
What are those employment strengths?
Responsibility. Following directions scrupulously. Devotion to their job. Not getting distracted. … These guys, when given a job, stick with it, stay with it, love it, and can do it very well. All you have to do is accommodate their needs, which is dealing with sensory stuff, simplifying instructions, breaking it down into tasks.
This probably something that strikes fear in the heart of many parents: How can you ensure a future for your child when you’re no longer there to help guide them? What would you say to parents who are really nervous?
I think that’s a really important question that parents don’t pay enough attention to, because we can’t bear to consider it. Massachusetts is one of the strictest states in the country for only allowing small group homes because they want to make sure there’s nothing smacking of institutions. But small group homes are incredibly expensive because they have to be staffed at all times.
That means a very small percentage of our young adult population with developmental disabilities is actually getting residential placement with the state. The vast majority between 80 to 90 percent will live with their parents until their parents can no longer care for them. That’s not true in other states.
I would hope that we would start to open up more residential options and loosen those rules, so that we can just accommodate more people living on their own and look around at how other states are doing it, because all the research is that these young adults do better the earlier they move out of their parents’ house.
How is Ethan doing now?
Ethan has a great life, working four days a week. He still lives with us but has a community through Whole Children/Milestones in Hadley. It offers a lot of recreation and community: theater classes, chorus classes, the opportunity to see his friends on karaoke nights and potluck nights. But he still lives with us. It’s fine — but it would probably be better for him sooner rather than later to figure out some kind of supported situation that he can move into.
Candidly speaking as a parent who probably bargained to have an empty nest, how are you doing emotionally?
It’s funny. I think for a lot of parents, the reasons we’re not fighting harder to get a wider range of residential options is because we’ve come to feel it’s actually more a blessing than not. You have someone who loves rituals, holidays, family, connections with the people closest to him. He is a pleasure to be around most of the time. Seventy-five percent of the time, it’s a delight. So it’s not sad. It doesn’t feel tragic. It doesn’t feel like a terrible burden. So I think that’s why a lot of parents happily resigned themselves to this.
What was your biggest surprise in writing this? What was your epiphany?
That’s a great question: How wide the possibilities are around the country. There’s more possible than I imagined. Much of it is parent-driven: business opportunities, residential opportunities, community-building opportunities. A whole lot of that, if not all of that, is coming from parents in other states. What I’ve seen is really inspirational and really terrific.
The formula seems to be parents starting something that the state then recognizes and picks up funding for because they see the value: a supported farm, an intentional community, even just like hiking clubs. That is how Whole Children/Milestones in Hadley got started. I was one of the founders of that — a community for people with disabilities for children and adults. We were entirely self-funded for five years, and then the state came in and said, “Let’s help you. This is a terrific model.”
What do you to do take care of yourself?
I think most parents still remember how hard the early years were, where you’re teaching your child to talk, play, interact successfully. Your days are so defined by meltdowns. The later years are easier, and will always feel easier. It does get better. And that’s an important message for parents of young kids. You will find your equilibrium and your balance.
But it’s also true that I am haunted by knowing that Ethan’s long-term happiness will depend on us being able to urge him to be as independent as possible, so we must push him even beyond what it’s scary to do. We must push him to continue to be independent. And that may mean pushing him to live independently even before we are absolutely sure he’s ready.
How did your other kids cope with having a sibling with autism?
[Ethan] has two younger brothers without autism or intellectual disabilities, and at times, yes. But the gift of having an older brother with significant disabilities is that it was confidence-boosting for them early on. They were able to do a lot he couldn’t, and I think it also made them aware of the wide spectrum of people out there. I think this often happens with siblings of kids with special needs — they tend to intuit the needs of others, because they were having to sit there and watch and anticipate Ethan’s needs.
They also aren’t that defined by him. They each have their own passions. We tried to be careful about that. But I see it so clearly in other families — that the siblings are often just remarkably empathetic. Whatever else their accomplishments are, they tend to empathetic people who are good at drawing others out or helping where needed.