Upgrade me

Flying with an autistic and vocalizing son meant...driving from NYC > LA until recently....

We live in New York City and as a science writer-mom who a few years ago became interested in transcranial magnetic stimulation (TMS) as a possible treatment for our autistic son’s debilitating anxiety—which often leads to aggression including self injury—my partner and I were at first flumoxxed, wondering how we’d get this teen boy that my partner lovingly describes as the Wld Man of Borneo from NYC to the clinic in LA.

We drove.

We’d seen too many news stories of families getting kicked off planes for their autistic kid’s refusal to put on a seatbelt. That’s amateur hour for J, whose vocalizations include a high decibel screech-laugh, screaming, and talking loudly and nonsensically. He also when overstimulated has meltdowns that mean destruction of anything within reach, including his parents.

I used to believe our ban on flying was also borne out of our collective spirit, our consideration for the other passengers to NOT subject them to J’s noises and unpredictable behavior.

The TMS actually helped enough that we could fly with him again—not easily—but the alternative was becoming an impossibility. Driving cross country with a special needs teen on a special diet was so stressful and left Karl and me in a state that required a bunch of chiropractic and acupuncture sessions. We are older now and can’t imagine doing any kind of drive like that again, not to mention that as a mixed race family, many stretches of the drive exposed us to racists, especially when I was driving. For the last eight years until she passed this May, I was taking care of my mother in Minneapolis, and we were able to get J to fly there when she was actively dying, and then again for her memorial. Not easy—my partner has scars on his face to prove it—but we got it done.

Flying alone, thus, is absolute bliss for me. For my 2022-23 book tour I asked the publicist to book me on Delta because I was accruing miles from flying to Minneapolis (hub city) about every three weeks. Simon and Schuster also bought me a higher class of fares than I would buy for myself, more miles and more points toward status. Concurrently, J had a violent meltdown at school in which he fractured his own finger so badly he’d need surgery. Given how delicate the hand is, after interviewing a bunch of surgeons, we opted for the one who was so highly regarded the other doctors wondered why we were even talking to them if we could get in with Dr. Chu.

Dr. Chu of course is so famous he doesn’t take insurance. The consult alone cost $1000.

For Jason, however, cost is not and will never be a consideration. Dr. Chu’s office also helpfully said I could pay in installments, and I was excited to learn they took credit cards.

Long story short, the surgery was an absolute success. Three pins later, and with the sutures on the inside, so J wouldn’t chew them off, as Dr. Chu is also a plastic surgeon, J was actually pain-free. And after a few months of therapy, it’s impossible to tell the finger was ever harmed at all.

At that time, Delta was moving to becoming more of a bank than an airline, i.e., status depended more on spend than butts-in-seat. This of course caused a lot of consternation and protest from actual frequent flyers, and Delta backtracked a bit at the bad PR by offering all sorts of compensatory rollover schemes exactly at the time I had maximized my flights and spend via the book tour, the operation by acquiring the airline credit card with its bonuses. Suddenly, I had airline status!

Having status and the card means I get to use the airline club and get free upgrades, “subject to availability.” Every time we fly even if it’s just a few minutes, I used my companion coupons to get J into the club (the “klerb” as I like to call it) for a quieter atmosphere, less stimulatory lights in the bathrooms.

Most recently, J almost clawed my partner’s face off on one flight so I used all my miles and upgraded him on the return so he could enjoy not only first class, which he’s never been in, but one of those kinds that are like a cubicle. He loved it.

But it also made me wonder perhaps J also deserved and needed more space so he could fly comfortably. There’s a place on the airline app where you can request and also refuse upgrades, and I have them joyfully checked YES! if I’m' by myself, sadly NO! when I’m with J. I try to get three seats together, which generally means way in the back which often means we are stuck by the bathroom.

I wondered if I had it backwards. If being so worried about people getting mad at us for J’s disability, especially people in first class who putatively pay for more luxury, i.e., quiet flight, also didn’t give the other passengers enough credit for their capacity for tolerance. Why should I go into this assuming they’d feel entitled and inflexible?

After some research, I learned as the cardholder with status, I could hook J and my reservations together so we’d get upgraded together or not at all (n.b. even with the connected reservations, an agent’s mistake upgraded us to Comfort Plus IN THE NIGHTMARE SCENARIO OF TWO WINDOW SEATS, so caveat emptor—I had to beg that gate agent to get us out of that pickle). Comfort + by the way just means plus 3” more knee room, the width of the seat is the same.

In our short history of airline travel, I have come up with making little cards that explain J’s disability, which I distribute in a radius so people don’t have to spend their whole flight turning around, craning their necks to see what the noise and sudden movement is. Some passengers find the cards themselves weird. A few times people return them, probably fearing I’m trying to convert them into some cult religion.

This week, I took the unusual step of checking the box to tell Delta UPGRADE ME. A few days prior, J and I were notified we were upgraded to first class for a two hour flight to Charlotte to attend a biomedicine conference on autism. With trepidation, we boarded with all the Tumi-toting road warriors. As they worked on their pitch decks and budget forecasts on their laptops, J did make a fair amount of noise and also wrestled with me in disagreement of me withholding his i-pad until he was quieter. In terms of a ruckus, I’d put it at a 4 out of 10. Noticeable but nothing like him physically attacking his dad.

Also, our upgrade meant Dad got to chill in coach and he said he immediately put in the earplugs and had a sweet, sweet sleep. i.e., win-win, upgrade-upgrade.

Even without my little cards pre-apologizing for the disruption of J, no one in first said anything or even gave us the glare (same one people use for crying babies, who also cannot help themselves), or even looked over with curiosity. They all had their own things going on.

On the return flight, upgraded to the purgatory of Comfort Plus, J was even more rambunctious and wouldn’t settle down the whole time. Most people had headphones on, the people in front of us who I apologized to said “no worries.” Maybe the extra three inches makes people less stressed, better able to deal, I don’t know, but anecdotally it has been easier for me to fly with J upgraded. His behavior isn’t necessarily better—and he can’t help his behaviors and vocalizations—but he reports he feels less stressed, and this configuration had us in a row of two, just us two, instead of three. Again, Dad, sitting with two strangers, got to pretend he didn’t know us and take a nap.

This has made me examine my own assumptions, like my son automatically being burden to the world around him. I note when flying with him I’m mostly stressing about others’ comfort—but why not his?

And why deny people the chance to show how loving and accepting they can be?

UPGRADE ME.