Donna Wilson, left, had worked at the Monarch School for seven years when she offered to fill in as house parent for a few weeks. That was two years ago. “I learn every day,” Wilson says of her interaction with such students as 18-year-old Riley Simpson.
Riley Simpson could have become a statistic, one of the growing number of people with autism who leave school only to find that the next step toward independence – a job and a home of their own – remains just beyond their grasp.
Instead, Simpson has found something entirely different: Dinner parties. Job interview tips. Advice on the difference between Madonna and Lady Gaga.
“When everyone laughs, it’s because we understand each other,” he said as he gathered with friends over a spaghetti dinner. “We have the same experiences in life.”
That didn’t happen by accident.
Simpson, 18, will graduate this spring from the Monarch School, a therapeutic day school in west Houston.
A generation or more of mainstreaming students with disabilities has increased public acceptance, but employers have been slower to adapt. Options for community housing are still limited, as well.
Monarch is trying to change that, one student at a time.
The school’s mission has broadened over the years.
It now serves students from prekindergarten through high school and offers a post-graduate program with internships, help finding jobs and, for some students, the transition to college. It has a small housing program, a cluster of homes near the campus where students ranging from their teens to early 30s live with a house parent.
An apartment program for more independent living could start next year.
Monarch serves students with attention deficit disorder, Tourette Syndrome, traumatic brain injury, and mood, anxiety and seizure disorders. The number with autism spectrum disorders has risen dramatically over the past 15 years and now accounts for almost two-thirds of the school’s enrollment, executive director Marty Webb said.
Nationally, the number of children identified as having an autism spectrum disorder has doubled over the past decade, and 1 in 88 children now has been diagnosed with the condition, according to the Centers for Disease Control and Prevention.
Autism is a developmental disorder, marked by varying degrees of difficulty in social interaction and communication; about 40 percent also have a cognitive impairment.
Boys are four times more likely to be affected than girls.
Research has found genetic mutations that can raise the risk; other evidence points to risk factors including maternal obesity and paternal age.
Early diagnosis and intervention have eased the hallmark behaviors of some children, said Linda Holloway, who chairs the department of rehabilitation, social work and addictions at the University of North Texas.
“The schools are doing a much better job,” she said.
Public schools provide services until students turn 22; private schools charge tuition – at Monarch, it varies with the student’s level but can top $30,000 a year, although financial aid is available.
Too often, Holloway said, progress ends when students leave school.
“We talk about this black hole after graduation,” she said. “Too many young adults don’t know about the resources out there.”
Unemployment and underemployment among adults with autism is as high as 90 percent, according to Lisa Goring, vice president for family services at the advocacy group Autism Speaks.
That helps to explain why lifetime costs to care for a person with autism are $1.4 million, according to research from the University of Pennsylvania and the London School of Economics. The cost rises to $2.3 million for those who also have a cognitive disability.
Helping one another
The kitchen becomes the hub of activity, as when dessert prepared by house parent Donna Wilson, left, lures residents Megan Wright, second from left, Emily Hayes and Riley Simpson.
Riley Simpson had his first job interview last month. And while he didn’t get the job, he felt good about the experience.
“They liked me,” he reported. “They wanted to go full-time. I did really good, though.”
Simpson has a form of autism called Asperger’s syndrome, characterized by normal to high intelligence but difficulties with socialization and communication.
“I normally don’t like to brag, but many people have told me I’m lucky,” he said. “I have a pretty good grasp of what’s going on socially.”
When people from Monarch’s transitional living program sit down for a communal dinner, Simpson is often at the center of the conversation.
He’ll throw out provocative questions just to get people talking: Who thinks the end of the world is coming? Who likes Victoria’s Secret?
Kate Matthiesen mentions that she is terrible at volleyball, and he reminds her that saying such things reflects low self-esteem.
‘I learn every day’
Donna Wilson had worked at Monarch seven years when she offered to fill in as house parent for a few weeks. That was two years ago. She’s now at the house Matthiesen shares with Patricia Threatt and Emily Hayes.
“I learn every day,” Wilson said. “I’m lucky to be here.”
All the residents do their share of chores, but the communal dinners are for practicing social skills and having fun.
Hannah Hess, who is 19 and has Asperger’s, is talking with Khalid Al-Alawi, 15, Megan Wright, 24, and Simpson when Matthiesen, best-known around Monarch for her artwork, starts to tell a visitor about one of her paintings.
“Kate – no offense, but I was talking,” Hess says.
“OK,” Matthiesen says.
“No, it’s not OK,” Hess tells her.
“Someone should do an etiquette class,” Hess says to no one in particular. “I know I could use it.”
She is finishing high school and plans to study fashion design at the Art Institute of Houston.
Like many of Monarch’s services, the housing program grew out of requests by parents for more assistance as their children grew older.
The school moved to a new building on an 11-acre campus in 2009; construction on a second building is set to begin this summer, thanks to a $5 million donation from the John M. O’Quinn Foundation. The campus will be named for O’Quinn, a Houston trial lawyer who died in a 2009 automobile accident.
The surrounding neighborhood offered affordable housing within walking distance, where students could live with a house parent as they prepare for the next step in their lives.
A few are finishing high school. Some attend Houston Community College or other post-secondary schools.
They are expected to hold internships, if not paying jobs, and to help at community fairs and other neighborhood events.
“They aren’t just takers,” said Webb, the executive director.
Finding their passion
Some in the program will learn to live on their own. Others won’t.
“The goal is not to cure autism, but to get on a track that will allow you to be successful,” said Neal Sarahan, program director for Monarch’s two most advanced levels. “When we started 15 years ago, 95 percent of people with autism had no chance of being in a relationship, of being employed, or being employed at their skill level.”
The numbers are only slightly better now, although Webb and Sarahan point to Monarch graduates who run their own businesses and are raising families.
Sarahan said employers increasingly understand that hiring people with autism or other disabilities requires support both for the person with the disability and for those working around them.
While Simpson and his friends plan for the day they join the workforce, they can look to someone who is already there.
Threatt, 30, has a part-time job at Starbucks, along with internships at a YMCA and a school for special-needs children.
She says she was raised to be unaware of her disability, which affects her cognitive abilities but not her long-term goal: to work as a teacher’s aide for special-needs children.
She plans to continue her own education while working toward her goal.
“That,” Threatt said, “is my passion.”