As seen in the St. Paul Pioneer Press on 5/3/15
My son Jack turned 16 on the same day in June 2007 that a Wisconsin toddler drowned after wandering away from home. Though we never met, my heart ached for the parents whose fate I had feared. I’d worried about a number of scenarios that would not end well, for my son also has autism and he was busy, impulsive, and mostly nonverbal until he started school The intersection of the two events on the same day — a birthday and a tragic death — prompted me to write the first of many columns for the St. Paul Pioneer Press.
Back in 1993, Jack was one in 10,000 with the diagnosis. I was uneducated about autism but I quickly became first a student, then an advocate. I’ve wanted people to understand Jack – his idiosyncrasies, his challenges, his humor, and tender heart – and to welcome, not exclude him, from their worlds.
Many of the parents I met early on also longed for someone with a high profile to embrace the cause so the condition could emerge from the shadows and enter the spotlight of philanthropists, scientists, educators, politicians, and employers. In the years since I wrote my first column, an astonishing number of people have taken note and become advocates, typically because autism has touched their lives: professional golfers, actors, writers, and television producers among them.
We’ve made great strides in drawing attention. We’re lighting it up blue.Professional sports teams are highlighting autism in April, just as they’re sporting pink in October to support breast cancer awareness.
“Autism Speaks” changed the landscape dramatically. In 2005 Suzanne and Bob Wright founded the nonprofit after their grandson was diagnosed. Ten years later, 70 million people are considered to have autism. That’s one in 68 (one in 42 for boys). Autism Speaks operates globally, funding research on genetics, environmental risk factors, and medical conditions that frequently afflict people with autism: epilepsy, gastrointestinal and sleep disorders.
I’ve broadened my advocacy, as I now serve on the board of directors of Fraser, Minnesota’s largest provider of autism services. Led by CEO Diane Cross, Fraser serves nearly 10,000 people who are touched by autism. Offerings run a wide gamut, from a diagnosis to helping young people discover interests, skills, and talents so they can find employment.
More than 20 years after his diagnosis, my son Jack lives a semi-independent life, with financial support from the county and daily assistance from Fraser employees. My bearded son enjoys living in his one-bedroom apartment; it’s cozy, he says, and he likes his freedom. When I visit and comment on the condition of his bachelor pad, he always responds: “What are you, my mom?”
Though I began writing about Jack, I’m now writing with Jack. He’s advocating for himself. He is thoughtful and articulate — when he chooses to engage in conversation. He’s not just witty — he’s very sensitive, too. The words people use to describe his condition matter to him. He is adamant that “autism is not a disease … it’s the way my mind works.”
He doesn’t understand why some parents won’t vaccinate their kids because they fear a connection to autism. “Why is that a bad thing? If parents are afraid that vaccinating their kids might cause autism, wouldn’t that be better than your kid dying from a disease?”
Jack has had a team of people working with him for more than 20 years now. The faces on the team change but our purpose remains the same — to offer support for whatever challenges are most pressing at the time. As parents, we want our kids to become employed, to live purposeful lives.
We’ve spent countless hours in meetings, assessing Jack’s needs, developing strategies to meet them, and evaluating their efficacy. In recent years the focus has broadened to include conversations about his strengths.
Jack abhors meetings so he often sits silently off to the side, while adults talk about him. More than once, as we’ve talked about him, he’s piped up. “You know I can hear you, don’t you?”
He’s less comfortable now with others talking about him; he wants to be consulted more and to assume more control over his life. His comment is a sobering reminder that we’re not trying to repair a broken automobile — we are talking about a human being.
So teams meet, discuss; professionals work … parents push.
When they age out of the public school system, are the young adults with autism making strides toward becoming taxpayers?Organizations like Fraser are helping young people prepare for employment. While some could work independently, others require job coaching. Yet, many who want jobs can’t even get an informational interview, much less get past the online application process.
It’s a conundrum. An enormous amount of time, effort and expense go into helping students with autism. But once they exit the school system, they have far fewer supports to help them navigate a much more complicated phase of life, with a much longer duration than K-12. Consequently, parents remain closely involved in their adult children’s lives.
Jack is eager to find a job that gives him a purpose and generates a paycheck. His solution is simple, as is his goal: “I want people to become more involved, to find ways to help. If I want to buy a book or a movie, it feels more rewarding if I paid for it with my own hard-earned money,” he said. “It feels more satisfying.”
He can hear us.
But do we hear him?