We were midway through our run the other day when Diego brought up one of his favorite topics: What, pray, was the plan for the day? I ran through a proposed sequence: “First we run, then take a shower, read, some screen time, lunch, clean up, digest [an essential activity that must be explicitly listed], go to Abuela’s house, get in Abuela’s pool…”
It was after this exchange that Diego began to show signs of anxiety. In his case, this means going wide-eyed, not blinking and saying seemingly random stuff, such as “Planes get grounded due to bad weather,” and “I didn’t go to the Valentine’s day dance in 2017 cuz it was too crowded.”
Such remarks refer to incidents that profoundly upset Diego in the past, like when our flight to Colorado to visit Diego’s aunt Gabi was canceled due to a severe storm. (We got on a flight the next day but the uncertainly was torture for Diego.)
This time around, I wasn’t sure what Diego was upset about, but I said to him, matter-of-fact, “If visiting Abuela stresses you out, you can stay home, you know. I can just visit her by myself.”
Sly mom that I am, I’ve figured I can motivate Diego to pull himself together by suggesting he doesn’t have to do something he actually wants to do.
“I do wanna go, I do wanna go,” said Diego.
As we were getting to the end of our run, Diego, serious as a head juror reading a verdict, said: “Ok, I’ll take two baths today.” You could see his facial muscles instantly relax and a look of peace and serenity wash over.
Poor guy. He must’ve been in agony. It was either “I won’t swim” or “I’ll take two baths.”
And why is this such a huge deal, some may ask? Because you’re only supposed to take a bath once a day! That’s just how the world works.
Come on. Really.
Diego, like many a mortal, always takes a shower (he calls both showers and baths, baths) after a sweaty run. He also showers after going in the pool. Hence the dilemma.
But he worked through it! It took a run with mom and some soul searching, but he was able to confront and surmount his rigidity. Next time, he’ll be thrown off for just a few seconds, but, remembering that two showers a day do not throw the whole world order into disarray, he’ll quickly say, “Ok, I’ll take two baths today.”
After dinner, Diego always watches TV in my bedroom. Any other time of the day, he uses the TV in the living room or his bedroom. Before turning it off, he makes sure the channel’s back on the regular CBS network, definitely not on one of the streaming services we subscribe to. The various remotes go on a tray lined up just so.
These are just some of the TV routines Diego adheres to.
To be diagnosed with autism, the individual must present with a certain degree of rigidity. Throughout his life, Diego has certainly shown what the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) describes as “Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior.”
Rigidity was the underlying factor in many of Diego’s epic tantrums. However, as he has gotten older, Diego, now 26, has learned to work with and shape his rigidity into a personality trait that’s actually endearing and very beneficial.
Anyone with rigidity issues, autistic or not, can learn from him.
Diego’s “inflexible adherence to routines” has served him well when it comes to important life functions, including personal hygiene.
Diego must, among other things: shower every day, make sure someone helps with shampoo once a week, brush teeth after every meal, get mom to help with thorough tooth-brushing every other day, have one (and only one) dessert a day, run three times a week, swim two buoys at the beach, and do his physical therapy exercises with dad.
No wonder Diego’s healthy as can be.
Diego’s physically challenged, presenting low tone in his upper body and atrocious motor planning skills. Because he sticks to routines he’s able to stay sufficiently strong to prevent postural habits that would lead to mobility problems, and to learn to do things most of us would have given up on if they were as hard for us.
Unlike him, we “normal” people usually set ourselves bars for achieving this or that level of mastery within a certain time frame. Diego doesn’t — not ever. He goes far because he sets no limits, and there’s no giving up when no expectations are set. Being alive is the only limit.
Then there’s the way Diego’s rigid ways affect how he spends his time, even how he experiences it.
Diego takes his daily meds at 7:00 PM. Typically, he’ll just pause whatever he’s doing, get his meds from the pill organizer in the kitchen, swallow them with water, and go back to whatever he was doing.
Sometimes, it’s close to 7:00 PM and Diego feels he cannot embark on something new before taking his meds. Say we just got back from the YMCA at 6:45 and Diego had it in his head that he’d be home just in time for his meds. To him, it would make no sense to go up to his room and call nonna or look at books.
He’ll just pace around the kitchen or stand in front of the oven clock waiting for it to show 7:00 PM. He doesn’t mind. He’ll just stand there and watch the clock. I don’t know anyone else in the whole world who can contentedly mind the time for so long with nothing else to distract them.
Diego displays this time-minding ability in many other situations. If he’s hungry and I’ve put his chicken tenders in the oven to bake and set the timer for 30 minutes, he’ll stand there and watch the timer count down from 30:00, then 29:59, 29:58, 29:57, all the way to 00:00. It’s like he experiences time differently.
Finally, rigidity can be as important as skill because it forces you into creating systems and routines.
Diego will never be late, lose his wallet, leave an umbrella behind, or forget to bring a towel when he goes to the pool. He’ll always know where to find anything in his room, and do what he said he’d do. He’ll never forget your birthday, skip his daily phone call to nonna or Abuela, or forgo hugging and kissing his parents good-night.
Diego’s IQ may fall in the intellectually disabled range, yet he needs less help than you’d think keeping things straight and going about his daily business. Thanks to his “inflexible adherence to routines.”
I used to view anything associated with autism as bad and wanted it gone.
I’ve learned that what’s presented as a negative can become, on balance, a positive, sometimes even a great asset.