Late Night Musings of an Autism Mom: My Daughter Wants Me to Make It Tomorrow

Classic autism seems rare compared to other spectrum disorders, like Asperger's Syndrome.
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Staving off sleep and insanity during my daughter’s nutty nocturnal episode, I scan Facebook and read blogs by other beleaguered parents in search of company.

The house is dark save for the glow from my iPad and the light from her laptop, which plays “Sesame Street”’s Slimey’s World Games for what may well be the billionth time. I barely exaggerate, as she’s no kid and has loved it for decades.

She’s 23 and I’m 60, for god’s sake, too old to be up all night trying to convince my grown daughter it’s bedtime. Or at least time to stay IN THE HOUSE.

If she didn’t have classic autism, she’d understand why we won’t be going out at 3:30 AM. She’d stop pointing to the door and saying “That way,” hoping to resume daytime fun in the middle of the night. And I wouldn’t have to stay up with her guarding against some potentially catastrophic event, like her just walking out. Autism parents call that “elopement” and it’s over my dead body that she’ll walk out that door unsupervised, which is why I decide to quaff some coffee. There’s no nodding off for me tonight.

Most nights go fine, which is miraculous given that, as a kid, she’d get up from 1 to 4 and there was nothing I could do (despite having tried all humane behavioral interventions) to stop her. Defeated, I’d watch a few hours of trashy TV till she’d tire of playing and run back up to bed.

Despite my history of dealing with late night antics, I did enjoy a solid 15 years mostly free of them while (thankfully ) she slept great. Old and rusty now, my confidence is cracked but my resolve remains strong.

An ability to handle these epic nights with relative aplomb puzzles my friends, who swear they could neither survive nor function after them as I do. But they don’t have a kid with classic autism and don’t know, like me, that there’s no choice but to just love and support her through them, knowing she lacks nearly sufficient perspective to consider the impacts.

Sure, I also offer bribes and tell her, unconvincingly, why we need sleep, that everyone else in the entire world is sleeping, that the places she mentions are closed, dark and empty, scarily so, even-as I try desperately and in vain to convince her she can’t will night into day.

I find that I’m simultaneously exasperated by my failed attempts and impressed with her use of functional language as she lobbies to “get dressed, put shoes on, go for a ride, get in the car, have keys please, jump in the pool” and lots more. I admonish her to stop campaigning but praise her for talking.

But neither praise nor admonishment have any effect and I resign myself to this occasional and hopefully fleeting phenomenon. I resist leftover lasagna and nibbling on nuts because, at my age, gaining weight is worse than losing sleep. I write while I wait for her to tire, having decided to try my hand at a blog about classic autism which seems rare compared to other spectrum disorders, like Asperger’s Syndrome.

I’m grateful there’s no major meltdown, no real hysteria or standoff at the door and that she said cool stuff in making her case. But then suddenly there IS a major meltdown during which she grabs hold of and pulls me to the door like a rag doll over and over again while I try to calm and reason with her.

Back and forth we go for hours during what experts say is her version of a panic attack. Extreme jumping jacks ensue as well and I wince each time her feet slam the floor, worrying about her soles which get little protection from her thin Isotoners. By now I’ve woken my husband, who can sleep through a tornado, to tell him I might actually need his help outside.

She puts her hand on the doorknob and locks eyes with me, warning that she’s a half second from just splitting and I nearly weep with joy when she lets go and spares us both the cold, dark night. I grab some wine to settle my nerves and a blood pressure pill to stay alive. I mutter FML but feel so much worse for my girl, knowing it’s well beyond her control as she cries rivers and screams at a spectacular pitch.

To absolutely ensure that I’m not slacking off, she calms a bit but urgently repeats “Mom!” at 30 second intervals till dawn, demanding responses as if they are lifelines, accepting a simple “Yes, honey” every time. By morning I’m hoarse from a thousand “Yes, honeys” and she settles for whispered “uhuh’s.”

Classic autism, featuring language and perspective-taking deficits, can make life tough for a young gal and her mom. Sleep deprivation notwithstanding, my greatest hope is that everyone else in her life will be equally patient with this precious person who, through no fault of her own, can go off the rails blind to the cost and absurdity of this self-defeating behavior, which she can’t explain the genesis of and which maturity should vanquish as it has so much else.

I did just tell her (again) that she has five more minutes before bed, to which she vehemently replied “No.” I knew she would, but had to try. The downside is that I’m gonna see the sun rise, haven’t slept a wink and noshed on nuts, after all.

On the upside, she can be a strong (though sometimes misguided) self-advocate. Silver linings, fierce love and a little Merlot bolster me and I hope for a nap and better night tonight.

By 6 a.m., she falls asleep and I cancel the morning activities she spent all night trying to expedite. The irony, of course, is lost on her but the fact that we weathered another storm intact makes me glad and sure of my purpose.