“A Whole Lotta Nothing Like Autism”

No one loves summer school like a ritualistic autistic kid. 😉 After the nightmarish lack of routine that is July 4th, accompanied by pointless outdoor socializing, shockingly loud fireworks that reverberate under A’s bony little behind even when he retreats to his bed, and several days off while enervated special ed teachers deservedly scrape together some R&R before jumping back into the fray, it’s back to business.

All the things that we think are crazy–waiting for the bus while humidity and bugs sap our will to live; doing regular school hours while other kids are kayaking at summer camp or weeding flower beds for below minimum wage; frying on blinding, treeless playgrounds where the metal bits of the play structures are practically molten with heat by mid morning–all these things make A feel alive.

Nothing teaches adults to stop imposing our will on kids like autism does. There is nothing we might say or do that will change who they are, nothing that comforts them more than sameness, nothing that will suddenly be supremely cooler. So we learn to bring some junk mail along to meet the bus, with which we fan our sweaty faces while we wait. We shop for stuff to make school lunches when stores are selling picnic coolers and ice pop makers. And we take their less structured siblings to do summer things during school hours. Nothing bespeaks a summer school family like dropping everything and rushing home before the bus, haha.

We took G antiquing the other day, and the three of us had an amazing time poking through old bits and bobs, sneezing from the dust, and listening to the store owner talk about how young people can be guided to cultivate a love of antiquity. The timelessness of the experience brought G’s shoulders down every bit as much as routine does for A. After we paid for the piece we all unanimously agreed on, we chorused, “You break it, you buy it! We APPRECIATE your business!” just like Mrs Kim, the antiques store owner in Gilmore Girls.

Sometimes I fantasize about siblings of autism getting some school district-sanctioned time off from school right smack in September and October. And parents like us would use that time to take these boundlessly sacrificing, generous kids to quieter beaches, amusement parks, aquariums, musicals, and road trips. No one deserves it like they do. They live with screaming and rules that would drive lesser humans to gnaw on their own hair. We would use that time to see the world outside the lens of ritual and stimming. We would fill up our spirits with companionable silence. And we would be momentarily free from the gaze of other families, which, even if it is filled with compassion, we need respite from. We already know what we look like to other people, and my fantasy vacation does not include this awareness.

There can be a scripted quality to society’s awareness of autism. And sometimes we don’t feel like playing along with the correspondingly scripted response. I think that is an okay way to feel, and am not even slightly ashamed of getting fed up with what I am expected to say and think, even when the expectation is from other special needs parents. We all have our real selves that instinctively recoil from this sort of benign censorship. Autistic people need freedom to stim and create their patterns, and their caregivers need a chance to lead productive lives and get enough uninterrupted rest.

Sometimes, my husband and I confess to each other how much we don’t enjoy the duties we shoulder. Then we talk about how cute A is. It’s both things all the time. If we couldn’t tell each other the stark truth, there wouldn’t be any safe spaces. We get through the holidays somehow, and are glad we can admit to each other that summer doesn’t mean much more to us than that. Hemmed in by rituals that don’t rejuvenate us, we have learned to make few demands on the outside world. We rely on each other for laughter and companionship, and we trust A’s therapists and a small circle of friends with the truth of our circumstances, knowing that their experience and knowledge of our family will keep us trucking. There’s nothing like kind people who show up and stay for the rough bits.

There’s something about being an autism family. It teaches us to live with uncertainty, and it shows us the limits of our forebearance. It builds a family that reads the interstices of speech and thought. It takes us high and low in extremes of feeling. It teaches us to listen to unspoken stories. It casts up the cliches and flaws in accepted wisdoms. It shows us a way of touching the world that leaves us forever transformed by greater sensitivity. And it compels us to love without artifice or manipulation.

Radha.