BEDFORD — Here, in a blank brick building in a suburban office park, is a vision of an autism quite different from what we’ve come to expect. And a glimpse of a future for which we’re woefully unprepared.
A teenager bolts down a hallway. His teacher races after him, puts a hand on his shoulder, gently guides him back. A boy lies on cushions in a closet lit by a lava lamp, his teacher waiting for him to rejoin the world. Two young men sit at a table, practicing halting small-talk as they eat. A teacher taps on an iPad hanging from a girl’s neck to prompt her to interact with a stranger.
“How are you?” a robotic voice prompts.
“How are you?” she finally repeats.
These kids are not the hyper-focused math whizzes who have trouble reading social cues, or the ones with encyclopedic knowledge of transit systems who don’t like noise. They’re at the other end of the spectrum, their limitations more profound. Some harm themselves, can barely communicate at all, or have low IQs. Their needs cannot be met by traditional schools, so they come here, to the Nashoba Learning Group.
The autistic population has exploded in recent decades. When her son Sean, now 20, was diagnosed in 1995, “I had never even heard of autism,” said Liz Martineau, Nashoba’s president. The rate of diagnosis was 1 in 5,000. Now 1 in 88 children has the disorder — 1 in 54 boys.
“I knew nobody with an autistic child,” she said. “I was told by his special ed teacher, ‘Oh, autism, that’s a fashionable diagnosis these days.’ ” Struggling to get her son the help he needed, Martineau quit her job as a consultant, trained in therapy, and started her own school. It now serves 90 kids, ages 3 to 22. A whopping 270 more are on a waiting list. Kids here get intensive one-on-one teaching. Some who arrive unable to communicate learn to express themselves with the help of iPads. They learn how to avoid harming themselves, how to be more social, how to make a bed.
For parents, these are miraculous developments. “When my boys were in [a traditional] school, teachers told me the most we can hope for is that they will independently complete toileting tasks,” said Una Basak, whose twins are now 10. They were hitting, biting, and pulling hair 100 times a day, she said. “We had stopped talking to our children because we believed they didn’t understand.”
After two months at Nashoba, therapists could see the boys had absorbed way more in those public schools than anyone knew. One could read words. The other could do math. After months of therapy, the aggression is almost gone. Basak now takes them to restaurants.
The therapy that transformed her children — paid for by school districts — is expensive, as is autism in general. A study by the Harvard School of Public Health found that, directly and indirectly, it costs about $3.2 million to care for a person with autism through life. Federal law requires that states provide services to people with autism until they’re 22. The picture for adults is more patchy. Nationally, 500,000 people with autism will enter adulthood in the next decade. Some will not qualify for services. Even high-functioning adults face high unemployment.
For men and women aging out of Nashoba, the picture has been more grim. In another time, they’d be institutionalized, or sent to day programs designed for people with other disabilities. But this year, Nashoba expanded, and now adults with severe autism can continue to learn, stay active, and work. On a recent afternoon, Nashoba’s first small group of adults were rolling out dough to make dog treats. A dozen students and teachers wore hairnets in the kitchen, talking and laughing as they baked.
There is joy here, but also trepidation. For every adult who lands at Nashoba, others will be stranded. Massachusetts is a national leader in tackling this challenge, but Martineau and others worry that services for adults with severe autism haven’t kept pace with those for kids, and that neither are adequate to what is coming.
“Kids who have been underserved all the way through will age out and become gigantic 3-year-olds,” she said. “That same tsunami will hit the adult world. We’re just at the tip of it.”