Who Takes Care of the Autistic Caretakers?
By: Tara L. Campbell
Tags: Caretakers, Work Life Balance, Neurodiversity, Autism

Who Takes Care of the Autistic Caretakers?

Photo by Daniel von Appen on Unsplash

In October, I attended the five day Stanford Neurodiversity Summit. The online format made the sensory-overloaded conference setting accessible to someone like me. More importantly, in all my years of experience as a parent of autistic children, and a late-diagnosed autistic, this was a refreshing conference that brought me tentatively back into what the science is finding. Finally, instead of a swirling void of hand-wringing and despair, worry and mommy martyrs, we have actually autistic, ADHD, dyslexic, and other neurodiverse representation among the experts and scientists. The mindset is shifting from “problem unknown, broken” to one that embraces neurodiversity.

“Neurodiversity is a concept that regards individuals with differences in brain function and behavioral traits as part of normal variation in the human population. The movement of Neurodiversity is about uncovering the strengths of neurodiverse individuals and utilizing their talents to increase innovation and productivity of the society as a whole.” — https://med.stanford.edu/neurodiversity.html

The opening speaker Liliana Mayo, PhD, Executive Director and Founder of the Centro Ann Sullivan del Peru (CASP) in Lima, Peru, started with the celebration and achievement of autistic students who went from complete dependency to successful, independent individuals supporting their families. The skills, mannerisms, and autistic behaviors were precisely the attributes employers value most in workers. Now that employers embrace the talents and forgive the lack of normalized social standards that don’t suit all people, employers in Peru are enthusiastic about hiring autistic individuals. At face value, this was a story that should be applauded for its success.

But as I watched the progression of dependence flip to independence, I was tuned into the fact that these individuals took on more and more responsibilities. Not only obtaining a stable career in a growing industry, but also sinking all their hard-earned money and time into improving living conditions for their entire families. The sole income provider. The sole home owner. The sole food provider. The sole payer for medicines. Plus, the caretaking that comes with all of the above.

One of the examples showed a mother confined to bed who needed medicine at specific intervals. The autistic son was there every morning to administer medicine and ensure she ate something before he left for work, and back again to do the same when he returned from work.

All of the invisible labor was his to bear: the cleaning and the cooking, the additional adjustments to his schedule, and the continuous education required to provide and care for ailing parents. As if that weren’t enough, the absolute dependency of several unemployed relatives was added to the list of responsibilities of this one autistic person. The same person who endured years of specialized education and adaptive behavior modification because he didn’t fit the social-communication norms of his society.

Continuing with the presentation, I watched the heavy dependency grow fast at work, too. The young autistic person, just or nearly finished with university studies while caretaking for a household, finds success at work with increasing duties. The employer enjoys the reliable, loyal, “non-gossip,” non-combative, non-whining, non-lazy autistic worker and rewards them with more work. The autistic worker performs at a life-long learner’s pace: analyzing situations and finding creative solutions to problems that benefits the employer through increased stability and profits. All the while, the autistic worker continues taking on more duties, unaware of the building pressures between home and work life. The same pressures that break neurotypical people long before they reach the levels that autistic people are dealing with on a routine basis.

I watched these success story examples and ask: who is taking care of the autistic caretaker when they are doing everything already?

Photo by Milan Seitler on Unsplash

This question came up over and over when looking back at my dad’s life. He died at 70, five years ago. He worked at the same company, persisting through several acquisitions as a loyal, hardworking employee whose prickly personality was somewhat overlooked in favor of his unique perspectives on solving expensive mechanical problems. For my entire life, up to the last two years of his long career, he worked rotating shifts. One week of nights, the next all days. Two weeks mid or swing shift, then back to nights or sometimes days. The chaotic scheduling itself became the consistency he relied upon, knowing that he would never have a set schedule. Duties, training, and more responsibilities continued to pile on, his employer enjoying the benefits of a highly-skilled, dedicated employee who mostly kept focus on his work.

At home, my dad was on the heels of the men-were-men generation where no one complained and no one ever talked about their feelings. It didn’t help that he was also born into a religious culture of puritan work ethic where it’s completely normal to fall down dead while hard at work. He wasn’t religious but that work ethic was deeply ingrained in his psyche. All this is to say, that in his mind, it appeared completely normal to build a house from scratch in the middle of the woods, a 40 minute drive from the nearest small city, by himself with two kids under eight, and an unstable narcissist spouse who berated him for never making her happy. He avoided conflict by putting his head down and working harder.

My dad’s days were spent working an inconsistent schedule resulting in terrible sleep habits that left him playing catch up only when the weather turned so bad he couldn’t do anything else. Otherwise, he worked on the house while not at work. Repaired and maintained the house while not at work. Stopped and grabbed groceries on the way home from work because he was already in town anyway, no sense in making the other adult drive into town just for milk.

Looking back, I don’t know how he managed. And my confusion is compounded by the fact that I continued with the same work horse, hold-the-fort, do-it-all-myself behaviors in my own life. It wasn’t until I found myself at a psychologist after a meltdown when she pointed out the now obvious conclusion: “Neurotypical people recognize the ‘this is too much’ line down here,” she said, gesturing chest high. “You, as most autistics, don’t know how to recognize that line when it’s crossed because you don’t know that it exists. For one, autistic thresholds are pushed higher than neurotypicals. And two, those thresholds had been crossed so often that now you’re conditioned to ignore and adapt in order to survive, starting at a very young age.”

She went on to explain that during early childhood, the threshold disconnect manifests in behaviors that are not conducive to societal norms, especially in school. In the first few years of life, the adapting process is just starting so autistic toddlers and children are much more sensitive and reactive. By adolescence, though, the adaptive process has kicked in and autistic tweens are better equipped to implement strategies to cope — some work better than others: for girls, the masking and conformist behaviors are easier because we’re socialized to pay careful attention to others, while boys are encouraged to be persistent and self-centered, pressured to achieve at all costs, to never to give up.

These strategies work for the most part through young adulthood, and by the time we’re adults, autistic individuals have earned freedom on top of the adaptive skills to cocoon ourselves from the unsafe attacks of others. As adults, the only systems we’re fighting are the work environment and the often much smaller insular family unit. Autistic people can focus on other things, the necessary strategies for success and survival operating in a type of maintenance mode.

Until the demands and responsibilities in our 30s and 40s, often now with children or other family members’ children, add a complex layer of urgency and need. Not one to rock the boat, and not able to recognize that the threshold is already so close, we take on the added responsibilities, pushing harder at work because we need more money to take care of home. Pushing harder at home because if we don’t handle it, who will? The worst case scenarios are at the forefront of our minds: people will get sick, the children will be subjected to miserable conditions. And contrary to the gross stereotype of cold, disconnected robots, autistic people are very concerned with fairness, equity, and doing what needs to be done so that others do not suffer.

So we do and do and do until one day, the strategies fail. The foundation of keeping it all going crashes to the ground. Or, in the case of my dad, the lack of prioritizing care for himself killed him suddenly.

I listened to the opening speaker’s remarks, all of which were shared from a place of joy and pride of her autistic participants. Still, I watched these young autistic men and couldn’t help worrying, and wondering: who will take care of them while they take care of everything?