Coming of Age
We hear so much about children with autism: the diagnosis, the treatment, the programs to guide them and their families. But the UW’s Waisman Center knows that these children grow up — and has stepped in to help
Liam Canavan-Randall is sixteen. He likes working with his hands — making things out of metal or wood — and he knows what he wants for his future: a job, his own place to live, and a girlfriend.
“I’d like to travel the world and learn a few languages. That’s like way up there in my dreams,” he says. “You know, just be like the uncle who can tell great stories about how he got into a fistfight in a bar in Shanghai.
“Just kidding,” he adds for the benefit of his mother, Cathy Canavan, seated across from him at the kitchen table in their Madison home where I interviewed them.
She laughs as she says, “I can’t come and bail you out. You’re on your own, buddy.”
Although Canavan-Randall sounds like a typical teenage boy, he is different from his peers in a meaningful way: he has autism. It is not a childhood disease, though it’s all too easy to get that impression from news media coverage and conventional wisdom. Autism is a range of complex neurological disorders that affect communication and social interaction, and no one person with autism is the same as another.
Fifteen years ago, there was “almost nothing known about autism across the life course,” says Marsha Mailick. Then researchers from the Waisman Center began following four hundred people with autism, ages ten to fifty-two, and their families. Mailick leads the National Institutes of Health-funded study and serves as director of the center on the UW–Madison campus. There are only fifteen such centers in the country, and in 2013, Waisman celebrated forty years of researching human development, developmental disabilities, and neurodegenerative diseases, and providing a comprehensive range of specialty clinics and programs.
Every eighteen months, Mailick and her team check in to measure which factors contribute to quality of life for children and their parents, and how their skills, needs, and characteristics change. Their work shows that while being the parent of a child with autism can be stressful, it becomes even more intense during the teenage years, as families prepare for a moment many liken to falling off a cliff: when children complete high school and move into adulthood. This new phase of life means parents and their kids must continue to advocate — and sometimes fight — for support needed in college or the workplace, or to meet basic needs.
A year and a half ago, my son was diagnosed with autism. This month we will joyfully celebrate his fifth birthday, a reminder that he has one thing in common with all children, whether or not they have autism: he will grow up. The journey will require more of him, and of us, than it does of families with typical kids as he makes his way through a world that is not necessarily equipped to deal with the way his brain works.
“All of these young children we are diagnosing and giving early intervention to, they don’t stay three, or four, or five [years old],” says Leann Smith, a Waisman scientist who studies the role of the family in supporting healthy development for children with autism. “Blink — before you know it they’re fourteen or fifteen, or twenty-five or thirty, and those individuals on the spectrum and their families need support just as much as three-year-olds and four-year-olds and five-year-olds and their families.”
Mapping the Road
Waisman researchers began their study thinking high school would be a time of high anxiety for children with autism and their families, and that life would get a bit easier for them after graduation. They were right that high school is tough — there is bullying, for starters, and teens with autism can struggle to negotiate the social landscape. Liam says the most challenging part of school is picking up on the undertones of what people are saying.
“I never know if a passing remark to me is supposed to be a friendly gesture or like a slight,” he says. “It’s hard for me to decipher what people are trying to say to me sometimes.”
But the Waisman study has also revealed where the hypothesis about high school was wrong: it turns out that the pros of being in an educational environment, and the cognitive and social stimulation that comes with it, far outweigh the cons.
Once students on the autism spectrum leave high school — and leave the specialists and teachers required by law to provide their education — the rate at which they gain communication, intellectual, and social skills slows down, even though the potential for development remains high until well into their thirties. Often, the dropoff is because they suddenly don’t have anything to do, Smith says. A significant portion of young adults with autism in the study had no regular vocational or educational activities after high school.
“If you’re not having something stimulating and engaging to do with your time, you’re not going to continue to gain skills, or at least not at the same rate,” Smith says.
So Smith designed a program aimed at helping teenagers with autism and their families prepare for what comes after high school, knowing that reducing stress for their parents would also benefit the teens. She mined the results of the Waisman study to create Transitioning Together, an eight-week program that teaches parents about autism in adulthood, transition planning, problem-solving strategies, and legal issues.
Smith’s first connection to autism was as a college undergraduate, when she worked as a therapist for a preschooler named Stuart. He is now a teenager, like the kids she works with at the Waisman Center, and he recently graduated from high school. “I’m so proud of him,” she says as she shows his childhood photo, which she keeps on a shelf in her Waisman office.
The transition group offers what families say has made a difference in their lives over time: ideas for how to reduce stress for them and their children, a chance to seek support from other families in a similar situation, and advice on how to adapt and change when difficulties arise as their children move toward independence.
Beginning this summer, the curriculum for Transitioning Together will be tested in a study of sixty high schools across the country as part of a project funded by the U.S. Department of Education’s Center on Secondary Education for Students with Autism Spectrum Disorder. The UW is one of seven U.S. universities collaborating with the center on a five-year project to develop a comprehensive school-based and community-based education program for high school students on the autism spectrum.
“At times, parents can be frustrated with the school system. … The schools may not understand the educational needs of their children and how they really are unique,” Smith says. “So it’s exciting to know that when we think about what would be a comprehensive model for education for high school students, that part of that model is going to include the family.”
Canavan says participating in the group was the equivalent of getting a map to help guide Liam through his teenage years. It also was a preview of how difficult it could be to traverse the system once he leaves high school and the educational safety net disappears. When we met, she was worried about whether he would be able to find his first job. He has mowed lawns and volunteered at the library shelving books. More recently, he filled out an application and had an interview at a take-and-bake pizza shop, but didn’t hear back from the employer.
“There are a lot of kids on the autism spectrum who are either unemployed or underemployed, and they live at their parents’ house for the rest of their lives playing video games,” Canavan says.
“That’s not going to be me,” Liam says before his mother can finish her sentence.
“That’s not going to be you — we’ve talked about it. He’s got so many different creative skills and energy,” she says. “You have so much potential, my dear, that it would be a total waste for everyone, mostly you, if you were not fully engaged in what you can do, versus what you can’t do.”
About a month after our interview, Canavan emailed me, bursting with pride: “My guy Liam has his first job.” Hubbard Avenue Diner, a local restaurant where the family eats regularly, hired Liam and had him start out by working behind the scenes, preparing boxes for pies and doing some cleanup.
Each Transitioning Together group is made up of seven families with children who spend at least half of their time in school in general education classes. The study involving the support group has included forty families so far, and beginning this spring, Smith plans to offer sessions through Waisman Center’s clinics for a broader range of teens with autism spectrum disorders.
When she was first developing the transition group in 2009, with funding from the UW Institute for Clinical and Translational Research and a private gift, she had an idea of what she thought would work. But Smith wanted to ask families in Madison’s autism community to find out what they wanted. “I think that was a really important first step,” she says. “Not to just come in as researchers saying, ‘This is what you need,’ but really listening to the voices of families and people with autism.”
Families told Smith they wanted two things: a forum to talk about real solutions, rather than vent negative energy, and something for their children to do. So while parents gather in one room, the teenagers meet in another for a social group. “When you have autism, it involves having a social disability, and so making friends takes practice,” Smith says.
Sixteen-year-old James Roll enjoyed meeting up with peers in the teen social group to play games and talk about their experiences in high school. They also worked on skills, including thinking up conversation topics and advocating for themselves. One clear highlight was a group outing the teens planned together. “It was laser tag. It was really fun,” James says.
His parents, Chan Stroman and John Roll, were elated to join a group specifically designed for adolescents. Many support groups, they had discovered, are filled with parents of young, recently diagnosed children who are seeking early intervention services or still simply reeling from the news that their parenting journey is going to be different from what they expected.
“[Transitioning Together is] very specific and targeted to families just like them,” Smith says. “Everyone’s really focusing on the same worries and concerns, so everybody’s in the same place.”
Participating in the program convinced Stroman and Roll that their son needed to have work opportunities while still in high school, but they also knew he would need help finding and keeping a job. They learned during one of the group sessions that a state agency, the Division of Vocational Rehabilitation (DVR), could assess James and provide services to help him succeed in the workplace and start building a resume.
The first person Stroman reached at the state agency told her she needed to wait until James was eighteen. But she knew better: a DVR transition guide distributed at Transitioning Together advised contacting the agency at least two years prior to graduation. Stroman and Roll kept pushing for assistance from the agency while James was still in high school.
“It’s not just the knowledge, but the confidence, because these are uphill battles,” Stroman says as they sit on either side of James on the couch in the family room of their Madison home. “I mean nobody is helping you.”
“And you don’t know what you don’t know,” Roll adds.
After going up the food chain, James was assigned to a counselor who evaluated him and found him eligible for services. After one job-developer contractor failed to find a summer job for James, a second helped him land his first job in October: a three-month paid internship at a Dane County Humane Society adoption center. James earns $8 an hour taking care of cats, and sweeping and mopping floors at the end of his two-hour shift. The job is a good fit for the teenager, who loves animals. He struggles with understanding directions at first, so a job coach secured by DVR shadowed him for the first few weeks to help him get started.
It took a year and endless phone calls to get James to this point, but — as Waisman’s long-term study shows — it’s an essential start to entering the world of work for teenagers on the autism spectrum.
“What we would like is for James to have the independence to do what he would like to do, whatever that is, and to have the room to figure that out,” Stroman says.
The work that went into landing their son his first job showed his parents the importance of continuing to look ahead. While James talks about someday getting an apartment and taking classes at Madison College, a technical and community college, Roll says they will continue to strategize and prepare for what may happen two, three, or four years from now.
“Even though it’s two years before graduation, you’re starting to think, ‘Okay, let’s start contacting groups that transition after high school. What services are available?’ ” Roll says.
That mindset — tackling problems step-by-step — is exactly the approach Smith tries to teach parents. “We know when you can break a big problem down and take a small action step, you’re going to feel better than sitting and doing nothing,” she says. “And sometimes it’s just recognizing when there isn’t something you can do.”
As families become the experts through their own experiences, they can help each other, too, Smith says. “If you have a sixteen-year-old with autism, you’ve been doing this awhile. So families have really great ideas and can be great sources of support and information for each other,” she says.
In the group, parents discuss issues such as the struggle to get homework done. Although it’s a common adolescent problem, Smith explains, it’s even more complicated when a child is on the autism spectrum, because organizational skills can be especially hard to master.
“The beauty of Transitioning Together is we’re not only presenting [families] with information based on research we’ve learned from our past work, but we’re also training them on how to, as a group, solve problems together,” she says.
Life after High School
When Nancy Alar was helping her son Matt Ward ’05 move from high school to adulthood, support groups for parents simply didn’t exist. When he turned eighteen, the family worked with a lawyer to create a new legal document, the Educational Power of Attorney, that allowed Alar to participate in decisions about his education.
Ward, who is now thirty-five, completed eighteen credits of college math as a UW–Madison special student while still in high school, and then moved on to Madison College for two years before transferring to the UW. He earned mostly As, Bs, and a few Cs; his only D came in a class at the technical school called College Success.
At UW–Madison, calculus was Ward’s favorite subject as he worked toward his math degree. He and his family worked with the university’s McBurney Disability Resource Center, which helped arrange extra time and a separate room for taking tests. “He did all of his own homework, without help from us,” Alar says, noting she could not assist him because she did not understand calculus, physics, or Spanish. “I do not really know how he did it all. People sometimes say that we did a great job raising Matt, but it was a true team effort, and he did the hardest work. Matt did a great job with himself.”
Ward struggles with spontaneous conversation. When asked a question, he sometimes responds, “I don’t know how to say it.” He communicates better via email, which is how we did our interview, but he also gives public talks about autism by reading a speech he has prepared. “Being able to do this is a chance for me to raise awareness for people with autism and/or other disabilities,” he wrote to me.
At the start of each of his UW classes, he gave a mini-version of his talk, so that his fellow students and the teaching assistants would be aware of his autism and related behaviors. McBurney officials believe that Ward is the first person diagnosed with autism to graduate from the UW. As of last year, fourteen students with autism enrolled at the UW are working with the center.
Ward was enrolled in the Waisman Center’s second preschool class at age two. He had been in a day care centerfrom the time he was six months old, but after he was diagnosed with autism at eighteen months, his mother was told she had to remove him.
“We had no place to take him,” Alar recalls. “I had to work. And most other day care facilities — this was back in 1980 — were not equipped to handle a child with autism. Matthew was basically non-communicative. He didn’t speak. He didn’t seem to understand spoken language, and we didn’t know what to do.”
Waisman’s director Mailick says that back then, putting children with and without disabilities in the same classroom was an experiment. Today, the center’s preschool (the Waisman Early Childhood Program) has eighty-five children in six classrooms, and up to one-third of the students have disabilities.
“They were literally lifesavers for us,” Alar says.
Ward’s family has been part of the Waisman Center’s long-term autism study since it began in 1998, and because of the family’s long history with the center, Smith also consulted with Alar as she was planning Transitioning Together. “I’m so happy that there are places people can go, like this transition team, because when we were doing it, there wasn’t any place,” Alar says. “We were making it up as we went along.”
Today, Ward lives on his own in a downtown Madison apartment, not far from the public library, where for five years he has worked two days a week shelving books, CDs, and DVDs. Attending the UW, he says, “helped me learn to focus on getting work done and taught me to travel around town on my own.” It was also where he began building his resume by working at Memorial Library and Kleene Mathematics Library.
These experiences helped him land his current job, but the path to employment was anything but easy.
“He always had a very successful library history — he’d never been fired; he never had any significant problems,” Alar says. “He took the library test, got 100 percent, and he still had to volunteer at the library for a year and a half before they gave him a paying job.”
Although Alar says hard work and creative problem-solving had always helped them clear educational barriers, employment was a different story. “We were not able to get past the job barriers with hard work,” she says. “It seemed like no matter what we did, we couldn’t get past that, because Matt’s communication challenges are so severe.”
Ward has found an outlet to use his gift for mathematics and visual thinking: when he was nine years old, he taught himself how to do origami. He started with simple cranes, and then moved on to making complex and difficult geometric designs using up to one hundred and twenty pieces of paper. Ward enjoys origami’s beauty, and he’s calmed by the repetitive motion of paper folding.
Three days a week he goes to ARTworking, a studio in Madison sponsored by Work Opportunity in Rural Communities, a nonprofit organization that provides job support to adults with developmental disabilities. He has space there to work on origami sculptures and create computer-generated fractal graphics based on mathematical chaos theory. He sells his artwork at autism conferences and other events through his small business, Matt Ward Enterprises, and recently donated a set of origami sculptures of rainbow orca whales to the Waisman Center for display.
“I feel like, if something happened to me and my husband, that he would be okay, which of course is what every parent wants,” Alar says.
Family in Focus
In the years before the Waisman Center began studying the role of the family in the life of children with autism, researchers interested in the disorder steered clear of the topic — because, at first, the experts got it dead wrong when it came to the parents’ role.
The first cases of autism were diagnosed in the 1940s. During the two decades that followed, doctors believed that some of the repetitive behaviors of children with autism were due to their mothers being emotionally distant. The concept of “refrigerator mothers” has long since been discarded and discredited, but it affected the direction of the research that followed, Mailick says.
“There was a reluctance to return to the question of what is the impact on the family, just because of this terrible history where the physicians just got cause and effect completely reversed,” she says.
Warmth, unconditional love, and support surrounded the teenagers in the homes of the families I visited who had participated in Transitioning Together. Their parents have worked determinedly for years to make sure they receive the services that they are legally entitled to and that give them the chance to grow up to become the best possible versions of themselves. Yes, there have been struggles and challenges, but the parents spent more time telling me about their children’s strengths than their weaknesses.
I observed that this comes naturally to them. And it’s an approach supported by the Waisman study, which shows that a strong relationship between a parent and child yields powerful and positive benefits for children with autism — and it’s an unbreakable bond throughout the child’s adult life.
The parents I met with were also kind enough to share advice with someone just starting out on the path they have been traveling. “Do not stop advocating, because you will hit brick walls,” Roll told me more than once when we spoke.
As we wrapped up our interview, I couldn’t resist asking his son one last question: “So, James, you know you have awesome parents, right?”
He answered firmly, and with a smile: “Yes.”
Jenny Price is senior writer for On Wisconsin.
Published in the Spring 2014 issue