As we look to rebuild after everything fell apart, once again, I’m struggling to find the thread that ties it all together.
The entrenched feeding aversion that led to an NG tube as a newborn that brought us to a new understanding of autonomy. The terror of seeing her eyes suddenly and persistently cross, requiring eye patching, vision therapy and bifocals, then eventually arriving at a place where anxiety didn’t dwell and acceptance ruled. The arduous therapy of all kinds, producing tearful meltdowns, impossible breakthroughs and, ultimately, decisions to let Stella truly be Stella. The ignorant resistance then wholehearted embrace of an autism diagnosis, rooted in an awakening to the beauty and courage of difference. And now, the perilous social-emotional decline of the last two years in public school, with our next destination, and certainly an upside or lesson, nowhere in sight.
Public school is not an inclusive environment for neurodivergent kids. The enormity of the system and its disregard for the wellbeing of kids like mine is breathtaking. Individual teachers care, yes. But they are trapped in a machine that is decades behind in its understanding of neurodiversity and hopelessly constrained by tax dollars in a society with an eroded social compact.
There are so many individual parents, like me, taking on Goliath day by day, step by step, toward a livable, non-toxic educational placement for their child. But it’s painstaking and isolated. So excruciatingly hard-earned as to be out of reach for many, whether due to a lack of time, access and awareness, or financial resources. I try not to think about the costs of hiring an education advocate, exploring therapies to patch the damage of rejection and constant misunderstanding, resorting to emergency mental health evaluations, sourcing private neuropsychiatric reports every two to three years, and securing legal representation to put down some semblance of a foot to stop the machine from destroying my child. All while supporting a girl on the edge, teetering on despair in any given moment, spark still flickering but dwindling fast.
How do we create a better educational system and world for autistic kids and all those who are socially different? It starts with sharing what we know and, I believe, connecting those individual dots of effort and resistance into a cohesive movement.
It’s hard to know what to do on a daily basis. How to make some small measure of progress rather than wait around for another deadline or threat. Reading the work of autistic adults is invaluable. As is connecting with those in similar shoes. I also have a new hobby, sending very direct “feedback” to researchers whose papers innately pathologize autism and interpret difference as disorder, so deeply offending them that you’d think they were the ones with nine times the average rate of suicide and 80% unemployment regardless of education or qualifications.
I have been working full-time for a nonprofit that promotes neurodiversity employment. But it’s like shouting into the wind, it doesn’t use my true strengths in writing and creativity aside from a general passion for communicating about the topic, and I don’t think I can continue while ensuring Stella gets what she needs. Lately, I can’t seem to focus on anything but making sure she’s okay. I mean, I really can’t. Just like during those early days with the tube and the glasses and the worry about what it means to be autistic in this world.
We’re in yet another chasm, Stella and I. But we’re down here together. And all those times over the years when we’ve fallen at the foot of impossible and gotten back up to say “no” and prove it wrong—whether within individual moments or spans of months or years—are informing us now. The stakes grow higher along with Stella, who now stands five foot three. Time to rise up.