The fight for people with autism in Michigan is about to get loud. Forceful. Impassioned. Rebranded, even. But it might take some practice.
Former Lt. Gov. Brian Calley, for instance, has a 16-year-old daughter named Reagan, a high school sophomore who’s in the middle of the spectrum. Even before she was diagnosed, he was a legislative friend to the cause. In terms of special needs, he says: “Much of what people need is not special to you or me. Health, a career, friends, a community. A person with autism deserves them as much as anyone else.” A great point, but not quite pounding a fist on the pulpit for civil rights. Which is the rebranding, if you will: the notion that at its heart, that’s what the Autism Alliance of Michigan is fighting for.
Autism advocates will tell you that kids have historically been stiffed on funding and frequently shorted on classroom resources, and their parents have been encouraged to accept low expectations. So let’s bring in University of Michigan communications and media professor Kristen Harrison, who was only diagnosed with Asperger syndrome after she figured it out herself and was tested in her 30s. Her 13-year-twins are autistic, the young man almost imperceptibly and the young lady recognizably. “We can’t find the support we need for her in public schools,” Harrison says, “even though they’re trying.”
Hmmm. Still not spitting flames, even if she’ll bring plenty of heat later talking about victims and heroes. As issues go, autism came late to the party, and it arrived bearing wine, some hors d’oeuvres and extra ice just in case. Spend enough time being grateful to simply be noticed and it’s hard to start demanding attention, no matter how much it’s deserved.
But someone has to say enough is enough.
“Enough is enough,” says alliance chairman Ron Fournier, 59. Aha … this could be what we’re looking for. “Stop with the lip service and start funding and supporting the inalienable rights denied to people with autism and other disabilities,” Fournier says. Furthermore, “Close the gaps between autistic people and the rest of us in health care, education, housing, employment and quality of life issues.” And keep in mind, “The picture is grimmest for autistic people of color. It’s a disgrace, an abandonment of civil and human rights.”
There’s a time and place for subtlety, but this isn’t it. Happy Autism Awareness Month.
A mortgage for opportunity
The latest numbers from the Centers for Disease Control and Prevention say that among 8-year-olds in 2020 in the United States, 1 in 36 had autism. Though that’s a slide in the wrong direction from 2018, when the estimate was 1 in 44, it’s not necessarily worrisome. More kids are being evaluated, which means more are being diagnosed, and they’re no longer just the middle- and upper-income white children whose parents could afford specialists.
What’s problematic is that for the first time, more Black and Hispanic kids are being diagnosed than white kids – 3% to 2% – and that they tend to have less access to care.
Calley, 46, now the president of the Small Business Association of Michigan, says he first connected the dots to Reagan’s condition after listening to testimony from parents of autistic kids before a committee in the Michigan House.
It took a second mortgage to pay for her early therapies, which began in preschool, but at least he and his wife knew what she needed and where to find it. Next came fighting for simple opportunity. Reagan is extremely smart, he says, and like many people on the spectrum, she has a staggering knowledge of the things she finds intriguing, in her case music and pop culture. He doesn’t even double-check anymore when she corrects him about when Tom Petty died (October 2017) or Michael Jackson released “Thriller” (November 1982). School officials were more obstinate. As part of Reagan’s individualized education program, or IEP, the Calleys wanted to set a goal of passing all of her high school classes, which she has done.
“It was a challenge, I would even say a battle, to get that accepted,” he says. The pushback was insulting, he says, and even worse, might have had long-term repercussions: Low expectations “really do hold them back in what is possible.” The middle of three children, Reagan has issues her older and younger siblings don’t. Whistling or a noisy classroom might unsettle her. Sometimes she’ll need to step outside, or spin in a circle to center herself – jarring at first, but not uncommon. With a reasonable amount of help, Calley says, he expects her to finish high school and move on to college or a trade school. He hopes she’ll find a fulfilling career and a significant other, maybe have kids, enjoy a cluster of friends. There are no guarantees. But enough help to at least make the attempt? That, he says, is a civil right.
Long learning curve
Where there is a cause, there is typically a dinner. The annual Autism Alliance gala is April 22 at MotorCity Casino, and all are welcome. Causes also typically come with agonizing stories, and all are welcome to sympathize, even decades later.
Harrison, 53, was late to begin talking. She never smiled. She’d rock back and forth on her hands and knees for hours. Her parents thought it was bizarre, but in the early 1970s, their daughter was a mystery with few clues. “My childhood was a sensory nightmare,” she says. “Everything was too loud, too itchy, too strong, too much.”
She was academically gifted, not that she’ll apply the term herself, and no one would have guessed it. “I had such a strong motive to connect with people,” she says. “That’s why I got a Ph.D in communication. This is a result of hard work.” She quickly recognized her daughter’s issues, she says, much as outsiders will note some of her mannerisms – repeating questions, flapping her hands. Harrison is home-schooling her, helping her catch up in math after the pandemic put her behind. With autistic kids, she says, the learning curve is long and gradual. Most schools aren’t structured for that, and won’t take note when someone with autism accelerates in her mid- 2os and jets past her former classmates. By then, she says, they may have already been walled off into a group of pitiables.
“Most of the approaches to autism, and all sorts of neurological issues, take a charity model approach,” she says. “Here are the people who are ‘less than.’ How do we show we are good people and help them?” Someone always has to be a victim, she contends, so that someone else can be a hero. Let’s try something different, she suggests. Let’s treat people as peers and be civil. Let’s offer help when it’s needed, because it’s right.
Civil, and right. There just might be something to that.