Chelsea Boes: In autism education, is separate equal?
On a rainy Wednesday this spring, I met my friend Carly for lunch at Biltmore Village’s Well-Bred Cafe. Drops pelted outside the window as we took bites of frittata and talked about our kids, who were both diagnosed with autism within the past year.
Carly is my opposite in strength, weakness and demeanor — an ISTJ to my ENFP, quiet to my talkative, her keys buried in her purse under an arsenal of supplies whereas I didn’t even bring a raincoat. But when it came to autism, neither of us were ready. Autism you don’t sign up for, prepare for, get educated for. Like Shakespeare said of greatness, it’s merely “thrust upon you.”
Carly paused her fork before her lips. “It shouldn’t be so hard to get a diagnosis.”
“No,” I said, taking my first swallow of coffee, remembering all the phone calls and waiting lists. “And you shouldn’t get dropped into the abyss between ‘early intervention’ and kindergarten. And even after you do get a diagnosis —”
“You’re not so much placed on a path as offered a menu of possibilities.”
Eggs and coffee disappeared as we talked about Applied Behavioral Analysis — which, depending on which expert you ask, either destroys the psyches of autistic children or rescues them from whole lifetimes of regression. Some experts, for example, advised that my little one — 3 at the time of diagnosis — be given the gold standard: 40 hours of ABA therapy weekly. My husband and I visited the clinic. But we didn’t feel ready to commit our blondie to the hourly obligations of a salaryman. Besides, our insurance doesn’t cover ABA.
Is this a mistake? Even before my pretty daughter turned 2, people in the grocery store seemed puzzled when they asked her questions and she didn’t look up at them. “She’s deep in her head,” I’d say, “but she talks while she’s playing with toys!” Or I’d say, “I can tell she’s smart.” Or, “She’s so good with her hands.” Or, “I think she’s going to be a comedian.” All true.
Carly and I felt we must speak for those who cannot speak for themselves. But how? How could we demand what’s best for them when we didn’t really know what “best” was?
Which led to another question: Where should these children go to school?
“Private Christian schools aren’t equipped,” Carly observed sadly, “which is why I finally turned to public school.”
“Same. Wasn’t that I.E.P. meeting magical?”
Carly nodded. At the I.E.P. meetings, finally, expertise and care convened around tables on our behalves. Speech and occupational therapy were held out as gifts. At these meetings, counties apart, Carly and I both wanted to cry with joy and relief.
This year, Carly’s daughter attended school in Jackson County. Mine went to pre-K at Old Fort Elementary under the exceptional care of Rebecca Shuford and Jackie Sorto, two teachers who saw the light in her.
The kids in my daughter’s class seemed to enjoy her. But now kindergarten approaches. I’m given a choice: Place her in an inclusive kindergarten classroom in Old Fort where teachers are underpaid and autism support is limited, or bus her to Pleasant Gardens in an isolated autism-specific kindergarten/first grade class.
Which is a better idea? For my daughter, for her present classmates, and for the other small autistic children in our region? Faced with next year’s school choice, I called the Autism Society of North Carolina. The specialist serving my county lamented that while most counties are moving away from separating autistic kids out of classrooms, McDowell is moving toward separation.
One of the first questions you have to answer as a parent of a child with autism is whether your child has been born with a pathology or a diversity. It becomes quickly obvious that it’s the latter. Then you have to run through the following litany: Will she always experience social isolation? How can I give her the best life possible and teach her to live in a neurotypical world? And, finally, a question you remember from school history books: Is separate equal?
Who knows — my daughter’s neurotypical classmates may one day decide whether to employ her, rent to her, allow or disallow her to vote. She gains from them. But they gain from her too. They gain an understanding of how to live in a diverse world. Friendship with her might lop off prejudice at its source.
“My daughter will always think differently,” Carly said as she walked me back to my office under her umbrella. “She’ll always experience things differently. I just want her to have all the tools she can have.”
This is what good mothering looks like. Good moms, ready or not, do what they can to prepare their children for the world — and to prepare their world for children.
Chelsea Boes lives in Old Fort and works as editor of WORLDkids Magazine in Biltmore Village.
This article originally appeared on Asheville Citizen Times: Chelsea Boes: In autism education, is separate equal?