My daughter loves stories, particularly about taking care of animals. She has an insane vocabulary, so if you sit and listen, and ask just the right questions, you may get to hear a 45-minute story about the adventures of seal, turtle, and momma and baby bird. She loves making things, so she might be building them a house to keep out the cold–just like in her Creative Galaxy tv show–or helping them hide from predators like in Go, Diego, Go. She might use words from those shows, but they get wrapped up in all the other thousands of other words and phrases she’s picked up. You might not notice that she’s scripting until you ask a question in just the wrong way and she screams. Or tells you to stop talking. In fact, it takes so much knowledge to participate in her world that only a few adults and almost no children can do it. But it’s worth it, because that world is beautiful and caring and overflowing with new facts and ideas and creations.
My daughter has autism. We suspected well over a year ago, debated for a long time about going to the doctor, and received a diagnosis last spring. This process made me stop writing, partly because I felt I needed to read and read and read. A diagnosis helped direct me to books and ideas that feel relevant. Like the incredible The Reason I Jump, one of the few books I think should be required reading for everyone now that so many children are on the spectrum. I’ve been able to empathize more, to understand rather than feel frustrated when she doesn’t listen the 20th time you ask a question, or when she screams and hides because we need her to put a sweater on. Instead of trying to change her, getting a diagnosis has deepened and improved our relationship by helping us understand the “behaviors” (screaming, hiding, not listening) that used to seem incomprehensible.
I also stopped writing last spring because of privacy concerns. She’s high-functioning, which means that we have the privilege of “passing” as neurotypical. Sometimes you really wouldn’t guess that she’s on the spectrum. Indeed, most of the people I share the diagnosis with try to prove me wrong. Friends and family intensely wish for her to be “normal,” for all of this to be normal, that she’ll grow out of it, that school or discipline or maturity will cure every behavior. But sometimes being on the spectrum is the only explanation, the only way to understand her building panic and even aggression when that sweet kid at the park just wants to say hi and be friends.
Should I not write in order to protect her, so that she can continue to pass as neurotypical as a teenager and adult? At times talking about diagnosis seems like the only way to explain to that sweet kids’ parents that my daughter might really enjoy being friends, and in fact can be an amazing friend, just not right at this moment. But I’m afraid people will get scared away, that they won’t want our complications in their life. They won’t want their kid to have to work harder or make up for a playmate’s social deficits. They won’t want their kid to get bored when my daughter ignores them for a half hour to focus on her stories. I feel incredible gratitude for the family of my daughter’s best friend. They’ve stayed steady and strong and even grown closer throughout the diagnosis, and after hearing from other parents of children with autism I know my daughter is lucky to have a close friend. But I’m also growing past my anxiety around my daughter’s social skills and realizing, for myself, that friendship doesn’t need to be a favor, a neurotypical kid isn’t a martyr for being friends. My daughter, and other kids on the spectrum, can contribute so much to a friendship, just with their own particular variety of complications.
Then there are the internet privacy concerns. Should I just stop writing to protect her from stigma? Or try to edit this all out of the blog? (Impossible.) I honestly don’t really know and feel I’m rolling the dice a bit on her future. I just know that parenting blogs have been powerful for me, and I’ve turned to them even more intensely since we started being concerned about autism. Darcel with The Mahogany Way has been a guiding star. My own thoughts on this process have been like the water levels rising and rising on a cracked damn for the last several months. And I know that, as a daughter, I would be curious to read (and/or have my parents remember!) the details about their thoughts and choices during these hazy days of toddlerhood.
Finally the question: is every claim I make about unschooling, like the idea that my daughter wants to stop and smell and talk about rosemary for an hour, invalidated by this diagnosis? Should I force her to stop doing that? The doctors–and many people who believe the diagnosis instead of trying to disprove it–certainly seem to think so. They think we should put her in behavior therapy, developmental preschool, get a public school individualized education plan any way we can.
We connected with another toddler on the spectrum–almost two and nonverbal–at the park one day. I could see him doing almost the same things my daughter had done at two: far more intent on organizing and building with small sticks than swinging or socializing. His mom seemed exhausted, and I understand. We were both trying to talk, to have a chance to maybe finish a sentence, maybe connect and support each other for a minute, but my daughter was all over the place and her son was headed back to his pile of sticks over and over. I tried to be comforting by saying my daughter did and still does the same thing, but I don’t think I expressed myself well. The boy’s mom took that to mean: this will go away, he will engage, he will talk, he will act like a normal kid at the park someday. What I would say now is: She did the same thing and I found it amazing. It’s harder that this boy was nonverbal. But I still saw a lot of imagination in that intent play. Indeed, if I had been able to take the time, maybe my daughter could have built some stick piles with him, and even caught his attention talking about something he cared about.
I don’t know for sure if that two-year-old boy would have responded to the same kinds of questions my daughter likes because I don’t know him well. But I do know that after researching therapies and school programs for the last year our strategy as parents is to keep unschooling. To enable her world–whether it’s tv shows or more and more collections of small creatures–so that we can enter that world and learn together. Plus enabling as much sensory play as possible, turning our house into a sensory gym as Jennifer Cook O’Toole describes in Asperkids. Which is where the research and empathy have led us–to an understanding of the way touch, movement, and interaction can feel so overwhelming and scary for a kid on the spectrum, and how bouncing, spinning, swinging, and organizing make things a little more comfortable. You can’t walk through my house at all because of the small creatures having adventures everywhere, plus the trampoline and swing, but this feels better than shuttling her from therapy to school to therapy all day long.
Like every other unschooling family I’ve talked to or read about, our approach of enabling and engaging our daughter’s interests–rather than trying to coerce them into something other people see as “productive”–seems radical and open to unending critique. The stakes of that critique feel higher with an autism diagnosis. It’s scary to write about unschooling and autism, but at the same time I have a hard time keeping my mouth shut when I see other children on the spectrum faced with minute-by-minute, second-by-second pressure to act differently all day long. At least I can put these ideas out there, and perhaps help other parents build empathy not only for their child’s anxious struggles, but also for their passionate construction of a world that feels comfortable and therefore inspires learning.