The Leaky Cup: A Parable

There once was a family who was part of a large Catholic parish.  This parish was a flourishing center of faith and fellowship, highly attended every weekend and host to many ministries and activities during the week.  Of all the gatherings sponsored by the parish, the most popular by far was the weekly Community Dinner offered every Friday night.  People young and old, from all walks of life, eagerly filled the parish hall to partake of the feast, freshly prepared and served by parish staff and members of the social ministry committee.

This family was among the many who came each week to eat and enjoy the camaraderie.  Curiously, it seemed that as often as they dined there, at least one of their cups had a leak, and needed to be refilled more frequently.  Week after week, the family ate with friends and neighbors just the same, but the food servers noticed how often one of them would ask again and again for more water.  Soon, the staff began to muse among themselves.  Was this family more careless than their neighbors?  Was the water being spilled?  Were they greedier than the other families?  Was there something wrong with one of them, that they drank so much water?  After a few more weeks, the staff started asking these questions directly of the family, who replied honestly that one of their cups seemed to have a leak, so their water needed filling more often.  The servers grumbled impatiently once back in the kitchen, wondering why this family could not use cups like everyone else did.  They speculated that the family might be purposefully doing this for attention.  Maybe they needed to be shown the proper way to use cups, or should learn not to ask for more than their allotted portion.  Eventually, the staff began to refuse this family water refills.  One or two even thought it might be in the best interest of the community to ask this family to not attend the dinners – at least until they can learn better manners, or, at the very least, show some gratitude.

Finally, one Friday, the pastor himself was helping prepare and serve the food in the kitchen, and overheard the talk begin about the family with the leaky cup.  As one of the servers scoffed that it was not possible for this to be a random problem week after week, the pastor spoke up in agreement.  “You are right,” he said.  “This can’t be happening by accident.”

The servers were pleased that the pastor noticed the problem too, and asked what he planned to do about it.

“Nothing,” he said.  “I am the one who gave them that cup.”

Taken by surprise, the servers were at a loss for words.  The pastor continued: “It is very easy to become complacent with what we do in the name of service… and so, to make sure we keep the elements of solicitude, compassion and hospitality at the front of everything we do, I asked that family if they would be willing to take a very special cup I’d set aside for them to use, week after week.  I call that particular cup, ‘the cup of kindness,’ as it brings us to the very brink of human need each time the holder asks in humility for it to be refilled.”

The kitchen staff looked down and said nothing.  The pastor added, “Since it’s just water, I didn’t think anyone would begrudge the family a few extra refills.  They have been very gracious to keep the one with the leak for me.  I’d asked around before I found a family willing to regularly use a cup with an imperfection.  Most people said they are here to enjoy a meal, not to have any extra hassle.  I finally found a family with the foresight to see that this cup was good to use at any table, and would in fact be an avenue for blessing and grace for the entire community.”

The pastor excused himself, noticing the food was nearly ready to be plated.  The servers were unusually quiet for the rest of that night, but as they brought plates and poured drinks, they found themselves focusing less on the cups and dishware and more on the people using them.  And thus it was that the leaky cup brought more to the banquet, exactly as it was, than anyone ever imagined it could.

 

How do people respond to your leaky cup?

 

An update on the Virtual Café

It is nearly two months after Autism Consecrated introduced our Virtual Café, and the concept is doing exactly what we had hoped it would.

In offering a Virtual Café, we sought to provide something simultaneously real and imaginary, simultaneously tangible and intangible.  Whereas an actual café might be a building offering an oasis of refreshment, our concept goes one step further by requiring participation of the imagination.  What distinguishes the experience is that it is a shared activity – the formation of a community in the unseen, where empathy and acceptance exist unbounded by tangible limitations.  When we offer a space to rest and recharge without pressure, that space comes from the constructs of our attitudes, our beliefs, our desires, our intentions, and our lived experience.  It is what ultimately drives any sense of refreshment our visitors will experience and take with them.  None of those things are “make believe.”  The hospitality we extend is very real. We know what it is like to live in a world that dismisses autistic needs as irrelevant to the community, as individual hardships to be endured without inconveniencing the many… and we also know that is not the way human beings are designed to live.  Our goal is to make St. Thorlak’s Virtual Café  a place where empathy and compassion are freely and happily given, as often as our cups need refilling.

We are pleased to have a model at hand showing that neurodivergent hospitality can, in fact, be offered in a readily applicable and sustainable way.  St. Thorlak’s Virtual Café has no other operating cost than the fraction of the web domain devoted to its posting.  The resources needed can be readily found in the imagination… in the unseen… in the creativity that flows from the mere attitude of welcoming one another.  Would that brick and mortar institutions might notice that inclusion and belonging are not prohibited by either the limitations of disability or the lack of physical resources and accommodations.

April: A Puzzling Month

Get out your symbols: April is here, and that means it’s Autism SOMETHING Month.  One pass over social media affirms that April is [choose one] Autism: Awareness-Acceptance-Celebration-Heavy Marketing-Conference Planning -Token Mentioning-Gross Misunderstanding-Online Arguing-No Two People Say or Feel The Same Way About It …. Month.

We see light bulbs, puzzle pieces, infinity symbols, rainbows, profiles shaded blue, profiles shaded red, profiles sparkling gold, the periodic table symbol Âû augmented with ctrl+shift+^… and a few more I’ve probably forgotten.

We hear autism called: a condition, a disorder, a disease, a way of being, a superpower, a neurotype, a diversity.

We see meme after meme telling us what autism is and what autistic people need… followed by explainers about what NOT to say, what NOT to do, and how NOT to help autistic people.  How many are written by autistics, and how many are written about autistics?

As an autistic person / person with autism / Aspie, and a parent of autistic kids (with whom I have checked and are okay with me saying that in a blog post), and a person with a degree in school psychology, I admit – maybe peculiarly – that I am overwhelmed by the fluctuations in rules and algorithms of reference, to the point where I’d rather be silent than risk saying the wrong thing.  Yet, I get why it’s like this.  I know how this storm originated, and I wait for the year the world declares recess on the shouting matches April brings.  Rightly, autistic people (like me) are tired of being told we need to adapt to the clinical consensus of what “typical” people ought to look like.  This model has dominated psychology for some time, but anyone recalling the history of the study of psychology will see that the discipline itself marches forward in phases which last as long as they fit the prevailing thought of the time.  Psychology as a discipline has some downright embarrassing moments in what we have promoted during different stages in the field.  Eventually, better-informed ideas appear in the literature, and what we held as dogma for many years gets jettisoned for what is, hopefully, better dogma in years to come.

The over-arching problem is that autism has never been well understood.  Even autistics have difficulty making sense of why we do what we do, but the one thing we know is that we are not defective.  But in terms of the clinical disciplines, autism remains a puzzle to non-autistics, warranting fretful study and treatment, and giving rise to terms suggesting we are disordered, diseased, trapped, suffering and in need of intervention.  Parents who hear doctors describe autism as something urgent and critical to treat assimilate this as a “disorder” without taking much time to question that angle.  Pair that with the daily task of trying to help a sensory-overloaded child not yet able to explain what’s happening, and parents are all the more susceptible to adopting battle-mindset to combat their imagined worst-case scenarios.  Good? Bad? Right? Wrong?  We can look back and see where that mindset has been detrimental to both children and parents, but we can’t fully accuse parents of ableism when this is how we have been taught to see autism.  Entire generations of people have been immersed in this way of thinking.  That is not going to disappear overnight, nor can all the rallying images of puzzle pieces be instantly obliterated, even as we realize that, for some, these symbols remind us how we have been treated like “puzzles” who don’t quite fit into the rest of humanity.

I risk being very unpopular for holding the belief that we do better to be clear, gentle and compassionate in our assumptions than to battle back with fury.  I know that runs the risk of enabling those who truly refuse to see autism as anything but an aberration, but I genuinely think more people than not are open to considering the advances we have made in knowing what autism is, and what it is not, over the past few decades.  What if most puzzle-piece wearing people never realized we might feel hurt by seeing that?  Those who double down and insist on keeping it prove themselves loyal to their slogans more than the people in front of them, which ends our hope right there; but some, I’m guessing, will express surprise and regret.  For some, the puzzle piece represents a commitment to understanding our point of view, which we well know can be a genuine “puzzle” to non-autistics.  To those, the puzzle piece was directed inward, not outward.  But, how are we to know which is which?  Maybe what we need is Autism Amnesty Month, to talk about and sort out all of this before the next batch of offending t-shirts starts printing again.

Lest I be said to be inauthentic, I truly do speak from both sides.  I completed graduate school in the late 1990s, when protocols and treatment plans still centered around Lovaas’ ABA technique and goals were still written such that autistic children would one day be indistinguishable from their typical, same-age peers.  I myself was raised to believe my number one job was to suppress, mask and conform, and when I did that well, I received multiple awards and copious praise.  I have now come to see that masking erodes my physical and emotional health, and have had to employ therapy techniques myself for recognizing and refraining from these habits while learning how to be autistic, unplugged and needy, in every aspect of my life.  It is as much work as it was learning to mask in the first place.  Many times, I slip and use the old terms I committed to memory back in my early career.  I notice myself using the wrong terminology especially when I feel too tired or anxious to pause and speak more accurately.  I am not an ableist.  I am an imperfect human being, in need of patience and forgiveness.  As such, I try extend that same amnesty to others in my path: Not everyone is an ableist.  Many are imperfectly trying to understand better, after years of being fed only incorrect information about autism.

We are in the concluding days of Lent, where the public ministry of Jesus is coming to a dramatic end.  His message has been missed by the elders and authorities, who rigidly adhere to what they know and have been taught, refusing to consider that there might be a way of seeing salvation that is completely different from their expectations and conditioning.  Rather than shouting them down, Jesus remains gentle, and silent, and asks God to forgive their rigidity and misconceptions… trusting that God’s justice flows not from violence, but from mercy.

I’m not suggesting autistics remain silent about what we know is true, and I’m not against correcting misconceptions and manners of reference which, knowingly or unknowingly, diminish our dignity and value as human beings.  I am, however, wishing this could be done in less confrontational and hostile ways.  I don’t mean harm against myself or my fellow autistics if I slip and say “disorder,” as it’s still called that in the diagnostic literature.  On a weary day, I might talk about the challenges of being anxious and sensory-overloaded more than the gifts of being perceptive, thinking outside the box and committed to my causes, which could give others the impression that autism is a condition to pity or cure.  Sadly, in acting to correct the seemingly ableist majority, autistics often employ the same techniques we are asking non-autistics to stop using with us… perhaps, ironically, because that was how we were conditioned by those driven to make us seem more normal.  Mea culpa.  But let’s not stop there.

Perhaps April will eventually become Neurodiversity Month, fostering the idea that we’re all part of the same humanity, and we all have a great deal to learn together, neurotypical and autistic alike.  Idealistic?  Yes.  But that’s how my autism speaks.

It’s No Better To Be Safe Than Sorry (…or, My A-Ha Moment)

Shamelessly, I out myself in that one statement as both a product of 1980s culture and an Aspie who, on seeing that iconic video of the song Take On Me, found it thrilling to think that somewhere, in some anonymous cafeteria, the portal does exist where one may cross from our lives as we know them to the stories of who we secretly long to be, kept safe under the disguise of ordinary comics.

My family never knew this… my classmates never knew this… and, I’d say my friends never knew this either, save for the fact that I didn’t really have any friends at this point in my high school career… but, I have tacitly been a secret agent for quite some time now.  At least, according to the comics I created in seventh grade and beyond.  It began nearly by accident – both the comics and the thrust of the main storyline – and yet, as I wrote more and more, the story of my odd identity took on life, and buoyed me, day after day, in my own anonymous cafeteria seat.

30+ years later, I see what those comics were to me: a coping mechanism and creative outlet, for starters.  But more so, they were my way to tell myself who I really am beneath the trappings of the environment in which I lived and functioned.  These comic stories freed me to be and say everything I felt.  I had a place in them.  I belonged.  And interestingly, the plot lines rarely revolved around acceptance or adulation.  Most of the time, I was a lone operative, and even within my own fictional setting, I was often not accepted.  My ways were different.  I was tolerated by my comic-peers because, somehow, I got the job done before they’d even started planning their routes.  It was not a matter of being accepted… it was a matter of agency.  I wrote the story, I took the chances, and I accepted the consequences.  Not all of my episodes ended well, but in each story, I was satisfied I had given my all… and, I eagerly awaited the next installment.  A far cry from my actual story at the time, which found me a high academic achiever with no social life and no sense of agency.  I did what was expected, and I did it well… but I was profoundly unhappy.  Hour by hour I pleased others to perfection, but never considered myself as an agent.  Funny, how I built my secret comic stories around agency.  Did I somehow know that this was the one thing missing from my true story?

As I think about that more, it’s true for many autistics.  We are seen from early on as needing help, needing therapy, needing intervention, needing the roadmap for how to live like others live… and, when we complete these exercises, we are praised for becoming more like we are told we ought to be.  We are just as often marginalized, even bullied, for being different, which only adds to our sense of non-agency.  We don’t always have bad childhoods, of course, but I dare say there is not one autistic who has not felt excluded in one way or another at least once.

What is “agency”?  It is the capacity to choose and act for one’s self.  Sure, there are social norms and societal expectations which are there for the common good of all and which ought to be known and followed.  But those finer points, such as what makes us happy, what makes us comfortable, and what makes us look different, are not critical to the functioning of the community.  “Agency” is just as much about the choice to wear comfortable clothing as it is applying for a job, even if our colors clash or our fabrics aren’t trendy.

I know I was very unhappy in high school because I had been taught, overtly and subtly, that ridicule and exclusion is for the weak, the lazy and the dorky.  If I sat alone in the cafeteria, it was that I did not try hard enough to socialize, or that my hair was combed flat and pulled back rather than teased high.  When my peers called me unflattering names, I yielded my agency to their version of the story, and I was ashamed I did.

But is it any better to be safe than sorry?  I tried and tried to rise to the standard of other stories that did not match mine, and I kept my “real” self hidden in my comic universe.  It was safe.  I was sorry.  And it was no better.

Today, I want to claim that agency, after all these years.  I want to be the one who decides what I do, because I trust that I do it for very good reasons.  I want to be who I always have been.  I may still be ridiculed or excluded, but I want to remember that those things – painful as they still are – do not affect the integrity of my story arc.  Perhaps wearing a fleece hoodie on the hottest day of the year makes others chuckle… but I am not writing it from their point of view.  I am writing it from mine, and that extra layer gives me superpowers they don’t see.  It regulates me.  It helps me feel safe.  And, when I feel safe, I function better.

That’s the story in which I thrive.   That’s the story in which we ALL thrive.

Maybe, for some, our agency remains secret.  For others, maybe not.  But, for everyone: It’s ours to claim, here and now.  Comics welcome, but not required.

– Aimee O’Connell