The Cross of Autism

This article was first posted with the Mission of Saint Thorlak in April, 2019.

by Aimée O’Connell

When Good Friday gives us pause to consider Jesus’ Passion and Crucifixion, our attention is most naturally focused on suffering, even to the extent where the words “cross” and “suffering” have become intertwined in the Christian lexicon.  For much of my life, I have equated “the cross of autism” with enduring the suffering particular to this condition and accepting it as my lot.  Perpetual anxiety, painful sensitivities to light and sound, headache and nausea in noise and crowds, inability to express emotions, difficulty speaking… all of these have been realities for me, along with debilitating exhaustion and a heavy measure of self-loathing when I fall short in acting up to social expectations.  All of this seemed in line with how I took Jesus’ Passion and Crucifixion to be.  In my spiritual immaturity, I saw Jesus’ suffering as a demonstration of “walk it off.” Take what life deals us, even when it’s unfair, and carry on without complaining.

Perfection in suffering, to me, seemed that I should do it so that nobody knew I was suffering at all.  I reinforced this idea with Mother Teresa’s admonishment to “do everything with a smile,” and with Matthew 6:17, which exhorts us to fast and sacrifice without making a show of ourselves.  I also tried to rationalize this through St. Therese’s Little Way, proposing that “doing things with great love” meant doing them so as not to bother the people around me with my problems.

Through the grace of God, and the fruits of my time spent in prayer this Lent, I am learning to see now that this is not at all correct.  It is an overly literal distortion of what is actually meant by each of those spiritual maxims.  My view has been rooted in manipulation – that is to say, manipulating my suffering to such a degree that I denied it, and I denied myself the chance to experience it fully.  In denying the truth of what I suffered, I paid the triple price of ordinary exhaustion plus the extra work of maintaining an untruth plus enslaving myself to standards I cannot possibly reach or maintain (and in the process, unfairly raising the expectations of others).

I see now that Jesus never “walked it off.”  He knowingly faced his accusers with complete vulnerability.  He told the truth of who he was, knowing it would be rejected, mocked, ridiculed and punished.  He made no pretense that the scourging was mortally painful.  He did not suggest he had the strength to carry the cross.  He did not say he would not die if he was crucified.  He knew every one of his limitations, and he offered them to the extent he could.

The actual cross of autism is embracing what I can and cannot do, in the same plain nakedness as Jesus.  To do this, as St. Therese implores, “with love,” it is not to pretend it is fun or easy.  Rather, it is to accept and believe that I am loved as I do.  Even in my weakness and shortfall, God loves me fully… right here, right now.

And, guess what?  This new way is harder.  Walking it off is nothing compared to checking my pride and admitting that I can’t do something, especially when it’s someone I don’t want to disappoint, like a friend or a superior or a family member.  Admitting the truth would actually spare me the pain of sensory overload and trying to do what I don’t have the energy or adequate capability to do, but it requires stripping myself of the clothing of my pride.  In that moment of truth, it is so tempting to heed the voice of the thief tempting me to avoid the cross and save myself from revealing my vulnerability. But, as we saw with the two thieves beside Jesus, one embraced his need and brought God present; the other sneered, preventing God’s grace from saving him.  Even on Calvary, where two or more acknowledge their need before God, there He is with them (Matthew 18:20).

The ordinary suffering of autism remains the same.  The anxiety, the exhaustion and the sensory overload are part and parcel of our condition. But in the absence of acknowledging this truth about ourselves, the suffering becomes dead weight… a thankless burden we adopt in exchange for the chance to look strong, to avoid being naked in our need, to not be mocked, criticized, or accused of being lazy. Yet, we know what’s true.  Are we willing to stand up for that truth, as Jesus did?  We begin by accepting God’s immediate, unconditional love in these weakest, most naked moments of truth… and discovering, to our surprise, that God’s love alone is real and plentiful enough to withstand the insults of those who refuse to believe, and to sustain us through all of our needs – good measure, and flowing over.

May each of us experience the reality of this love, abundantly, as we meditate upon the mystery of the Cross.

 

Prayer: Let Me Be Leaven

A new addition has been made available on our Prayer page, entitled “Let Me Be Leaven,” based on the very brief parable in Matthew 13:33 –

“The kingdom of heaven is like leaven which a woman took and hid in three measures of flour,

till it was all leavened.”

There are many, many times when we find ourselves in situations where we ask whether or not we should stay, or whether we would be missed if we leave.  Oftentimes this has something to do with our neurodivergence – our being misunderstood, or not noticed, or not able to participate because our needs exceed the accommodations available.  It is an awful feeling, to say the least.  There are times when it is obvious that it is appropriate (maybe even necessary) to leave.  Other times are more ambiguous.  We may want to stay for many valid reasons, but question whether it’s worth the cost.  We may feel a sense of loyalty and belonging, even if that is not always reciprocated.  It may be important to follow through on principle.  Or, we may very simply want to be there because we are there – which is valid reason enough!

For those times, the parable of the leaven in the Kingdom of God seems an apt comparison.  Aside from any physical parallels between how we feel and what dough endures (need we mention kneading, punching or pulling?), the idea of leaven makes an interesting meditation.  Our Lord spoke of leaven to describe how something small and humble grows into something grand and nourishing to great numbers, referring to how the Kingdom of God grows with each simple “yes.”  And yet, the process of leavening is also worth pondering, if we consider how yeast works alongside and within the popular and easily recognizable pantry staples.  Indeed, the sometimes silent, sometimes turbulent action of yeast is absolutely essential to the growth, expansion and full expression of the finished product.

Here is the text of the prayer.

 

Lord, let me be leaven.

When I am unseen, unheard, unknown in my community: Let me be leaven.

Let the full spectrum of me be present, if undetected, exactly as I am: stimming or still, restless or recollected, vocal or silent, vibrant or subdued, needy or fulfilled.

Hide me deep within surrounding measures of activities and committees and busyness and social gatherings.  May my presence permeate and thrive within the community, even when it is not perceptible.

Take into Your Loving Hands my yearning to belong, my desire to serve, the gifts I would share if given the opportunity – and rest them safely beneath the warmth of Your gaze, to rise and expand and thrive in the time You appoint.

Lord, hide me in the places You need me to be, and let me be leaven, wherever You lead me.

 

Amen.

 

 

 

We Interrupt This Lent…

by Aimée O’Connell

 

Nearly three weeks into the Lenten season, I come to our readers with the following string of thoughts, under the category heading: NOTHING WE HAVE EVER HEARD ABOUT LENT WAS IMAGINED WITH NEURODIVERSE INDIVIDUALS IN MIND.

(Okay… since I am a stickler for avoiding absolutes, let’s say “Almost Nothing.”)

 

While the better time to post this might have been before Lent began, there’s something to be said about solidarity in the trenches.  By “trenches,” I mean the places where we find the people who…

  • Are still trying to think of what to do for Lent
  • Have tried adding things but have not yet made it happen consistently
  • Have tried giving things up but realize we don’t function well without them
  • Have sat staring at examinations of conscience and wondered when we will ever find one that applies to our lives
  • Have abandoned stacks of planners, devotionals, penitential calendars and mini-retreats which seemed like a great idea when we picked them up
  • Find Lent JUST TOO MUCH

 

Maybe this doesn’t apply to you (… congrats!).  Or, maybe you’re reading this and thinking this is not exclusively an autism or ADHD thing (… but I will say, even if that’s the case, I guarantee, we feel it much more intensely!)  Bottom line is, I don’t see much written about the particular challenges of Lent for the neurodiverse, and so, for those who find Lent penitential for the sake of its being unattainable: you are not alone!

 

My intention here is not to say that Lent should be jettisoned altogether, or that neurodiverse people should be dispensed from Lent.  What I do wish is that we could have some real resources available for the neurodiverse, a list of Lent Hacks for us to familiarize ourselves with and practice here and there so that when the actual season rolls around, we have something proven to work with.  I don’t claim to have the answers, but I do have a growing list of thoughts.

 

For starters: We need to define Lent consistently and concisely.  What IS Lent?  We know it is a time of prayer, fasting and almsgiving, intended to remind us that our purpose in life is to love God with all our hearts, minds, souls and strength, and to pattern our lives around loving God, particularly in how we treat others.  Some will say it is a time to steer our focus back to God and away from the distractions of worldly entertainments and luxuries.  Some will say it is a time to make room for God amidst the clutter of our lives.  Some will say it is a time to discard the things that tempt us away from God, or a time to develop habits of prayer, meditation and contemplation.  All of this sounds good, in a very general sense; but, for the neurodiverse, it can also sound too broad… not specific enough… not tangible, not measurable – and, therefore, not anything we can grasp, physically or conceptually.

 

What about when the things other people consider “luxuries” are, for us, necessities?  Who decides what constitutes luxury? If we go by what the devotional guides say, we end up going without things that we absolutely rely on, such as grocery delivery and prepared meals.  Even more difficult is teasing out what others consider “entertainments” which, again, for us, are necessities.  Many, many neurodiverse people can regulate, cope and function better with help from electronic devices with screens.  Many of us communicate and connect with others over electronic devices in ways we simply cannot do in person.  Who gets to decide what is adaptive and assistive, and what is “luxury” or “entertainment”?  I never see that distinction made in suggested acts of penance or fasting… just the same urging to switch off our screens so that we can be more present to the people around us.  (If that were possible, we’d have already done it).  Where is the line drawn between acts of penance and denying ourselves basic needs?  And why is it okay to lump the things that neurodiverse people successfully rely on to function, in with the things deemed superfluous by neurotypical people, without some kind of qualification?  Does anyone ever suggest giving up other assistive and adaptive accommodations that are acceptable standards for other disabilities?  Is it ever printed in a Lenten devotional, “Just for today, leave your walker or cane home” – or, “For these forty days, stop relying on closed captioning, and rely on God instead” – ?

 

What about when our executive functioning does not know the difference between “distractions” and “important items”?  Do the authors of Lenten devotionals realize that, for some people, what you call “distractions” are an integral part of our panoramic, multisensory processing, and can’t just be given up?  Moreover, if what others call distractions are a way of life for us, is any spiritual growth even possible?  All I’ve seen are essays and dissertations saying that distractions are our downfall.  There goes another category of things that sound good for typical people, but don’t apply to us, unless difficulties with executive functioning really do disqualify us as saints.

 

Another question: How can we know which way to pray best, when the suggestion is to “pray more”?  What if we have difficulty keeping all our tasks in mind for any given day, and are doing well, but do not have the cognitive flexibility to stop midstream and pray?  What if our functioning is stretched to its limit already? What can we give up, to make time for prayer, when we struggle with time-blindness?  What if praying feels too verbal for us on any given day?  We are taught that mental prayer takes focus and years of discipline, and requires things like stillness and interior silence which does not often come easily to the neurodivergent.  We may be outwardly silent, but inwardly, the trains of thought are running on multiple tracks at full capacity.  We don’t have the cognitive ability to just stop.  Where is that accounted for, in Lenten guides and spiritual direction?

 

As an autistic adult, I find the Lenten guides for children easier to use and follow than those intended for grown-ups.  It is easier for me to concretely count out some of my possessions with the idea of donating them, or to budget out a certain percentage of my income or savings for charity.  It is easier to count prayers or minutes or check-boxes than to try and do an assessment of my life and my habits – because my environment and my routines are all wrapped up in the wild and crazy way I make sense of the world and function in it.  And yet – when I pray by rote, and write checks because it’s the time of year to do so… it doesn’t feel any different afterward.  I’ve done my duty.  How does that bring me closer to God?

 

Making a list of Lenten Resolutions has likewise proven ineffective for many of us, mainly because it is the equivalent of taking our familiar flight plan and adding in several detours and extra stops – without the allowance of more time in the itinerary.  Calling our routines “autopilot” is not a bad thing at all.  Autopilot is a reliable means of getting from Point A to Point B in the face of all kinds of variables, interference and conditions.  Taking a plane off autopilot is not a guaranteed disaster, but it requires an enormous and constant expenditure of attention, energy and action.  While we can fairly say it will develop discipline among the flight crew, it will also put everyone on high alert and raise the potential for going off course and encountering difficulties, and demands our full, constant and immediate attention.  We all know that voluntarily adding stress to our already-stretched-too-thin processing systems is a straight line to crash and burn.  Changing our routines for Lent – at least, among the neurodiverse – is not a very useful idea; and yet, that seems to be the overarching theme to most Lent devotionals and calendars.

 

More and more, I see the need – a desperate need – for new wineskins for neurodiverse people.  We need guidance on how to approach Lent in the ways we are wired to approach anything.  We need permission to pass up the devotionals, calendars and suggested penances which are written for neurotypical lifestyles.  We need better examinations of conscience, written by neurodiverse individuals for neurodiverse individuals, so that we do not keep treating our failure to align with neurotypical standards as sinful.  Of course we sin, of course we are in need of forgiveness – but how many sinful habits have evolved from trying to do things in ways not suited to our wiring?  How much confusion comes from compromising our needs because we have been conditioned from the youngest age that it is of utmost importance to satisfy others?  How many times has our character been called into question over things we genuinely cannot change about ourselves?

 

We need to hear more from neurodiverse clergy, supported by more and better understanding of neurodiversity by the Church.  This is something I pray for every day.  I would like to see a prayer calendar with forty days’ reflections on how our Church can grow in this understanding and need for support.  I would imagine this would benefit the entire Body of Christ, not just the neurodiverse.

 

For now, my working plan is to see Lent as a season during which we invite Our Lord to show Himself to us in our lives, and to show us the ways our lives can be offered (i.e., made meaningful) to Him.  How does He use our neurodiversity to build the Kingdom of God?  How does the witness of our lives reflect Him to those in our orbit?  Do we spend more of our energy trying to know, love and serve Him in neurotypical ways than in ways that we are naturally wired to be?  Do we trust that He does not ask us to extend ourselves past our neurodivergent limits?  Do we trust that it is better to say “no” to resolutions that are not compatible with (and even harmful to) our physical, sensory or social processing?

 

It takes real courage to step out of the boxes other people would have us in, and be authentically and vulnerably who we are.  To me, that is the most radical offering we can make.

 

Neurodivergent hospitality is not a contradiction

by Aimée O’Connell

One of the things we strive to do at Autism Consecrated is look at the many contradictory aspects of neurodivergent life in the hopes of finding solutions.  Universal design is a core value of ours, at times as much for the sport of the challenge as for the gratifying payoff each time the entire community can benefit from something which might instead have gone the way of an easily forgotten one-and-done accommodation.

The topic of hospitality is an ongoing conversation here.  What does hospitality look like for autistic and neurodivergent people?  Well, that’s not too difficult to answer, in theory.  Hospitality means “the friendly and generous reception of guests, visitors or strangers” (Oxford Dictionary).  Implied in that is a sense of genuine interest in providing a comfortable, safe, inviting setting for those who stop by.  Hospitality for the neurodivergent, then, is no more mystifying than finding out what our needs are, and then striving to provide for them.

Still, that can seem daunting to communities who are used to doing things as they have always been done, and who approach accommodations with a certain trepidation, consciously or not.  Besides that are the apparent contradictions between social ministries and autistic needs.  For instance: What does “fellowship” look like for those with low social energy, or in group settings that cannot provide the level of quiet and space some people need to communicate (that is, to process and participate in conversation)?  Any attempt to answer will be very setting-specific.  But here is a constant across all situations: connection is possible with as few as just two people.  Saint Thorlak often drew the attention of his mentees to what Jesus said in Matthew 18:20 (“Where two or more are gathered in my name, I AM present”).  Jesus is both present in the Sacrament of the Eucharist and in the community of His followers, whom he explicitly says comprise His Body.  In Matthew 18:20, He clarifies that community exists in groups as small as two – thus offering a way toward solving the question of hospitality for autistic and neurodivergent people.  Warmth, invitation, welcome and support can be offered individually to individuals at any place, any time, and community is achieved – that is to say, the Body of Christ is realized.

Saint Thorlak himself was mentored by the Victorine brothers in Paris, renowned for their credo Docere Verbo Et Exemplo – To Teach By Word And Example.  He had the reputation of being a stickler for the priests in his diocese to live what they preached, demonstrating discipline by themselves being well-disciplined, and demonstrating mercy by themselves being merciful.  He was also known to have great difficulty speaking, particularly in large groups (… sound familiar?) Much of his “teaching by word” was accomplished through writing, which was then read by and to clergy as pastoral instruction.  Saint Thorlak used writing to both accommodate his needs and conserve his social and physical energy for the Sacraments and important administrative matters.

Our pondering has led us to see Saint Thorlak’s method of teaching by word – both his frequent reference to Matthew 18:20, and his embracing his communication needs so fully – as his way of “teaching us by example.”  We constantly look for ways to model what we might like to see take shape in terms of universal design and outreach, all the while considering our needs as autistic people, and the needs of any autistic people in ministry and socially-active roles in church life.  It only makes sense to start with the same kinds of accommodations and supports as befit our own sensory and processing needs.  And so, we are going to try rolling out a beta version of one of our ideas.

Saint Thorlak’s Virtual Café is a simple page front offering images suggesting (we hope!) an inviting spot for website visitors to pause and connect, virtually.  If this were in three dimensions, we might picture a small café with comfortable seating, low lighting, a selection of refreshments which both please the palate and consider a variety of dietary needs… and, cats.  We happen to find cats most delightful and spirit-lifting.  If this were in three dimensions, we’d have to have cats, along with a cat-free room for those who find cats distressing or are allergic to cat dander.  (Anything is possible when we build cafés in our imaginations… the virtual model at least offers allergy-free images).  Over time, the cat theme may evolve into something more artfully nuanced; for now, the beta version has plain old snapshots of two feline denizens.

The café of our imagining would offer space to connect with one another, one or two at a time.  We’re not just proprietors here – we want to greet you, share time together and connect with you ourselves.  Your visit brings Christ present, and we are eager to welcome Him!  We genuinely seek the gift of your friendship.

Since this is a virtual café, we thought we might welcome visitors with a contact form.  We realize that has its limitations, particularly for those with low vision or difficulty typing.  It’s a beta version, after all, and our resources are extremely simple.  However, we hope that the technology on our visitors’ end can be of help to them.  Speech-to-text might work for those who need it, and perhaps down the road we can rig up a way to record spoken messages and send them through.  As for us, we rely heavily on typing, so that is a reflection of our own communication and processing styles.  We are happy to receive feedback and ideas if anyone has any to share.

So, what is the point of the form?  Anything our visitors want to say, share or ask.  Over the next few weeks, as Lent begins, we thought we might offer the specific idea of folks sharing their triumphs and frustrations with their Lenten journeys, since that (especially the latter) seems to be a common theme among fellow neurodiverse travelers.  Look for a blog post on that topic in the very near future.  But really, any topic you find relevant is of sufficient interest.

Please click through and give it a go!  May Saint Thorlak’s Virtual Café bless us with an autism-friendly realization of fellowship in the Body of Christ!

 

The Urgent Need: Autistic Mission

by Aimée O’Connell

Earlier this week, I referenced a recently published book intended as a field guide for bishops and seminary faculty in guiding and supporting autistic men discerning and responding the call to the priesthood.  As an autistic person, I feel the need to call attention to all that this book represents and its implications for the Church at large.  As a married woman, I am in no way qualified to speak about the priesthood or seminary formation – nor do I intend to.  However, as a member of the laity, I am charged with the same call to holiness and prayer as all my brothers and sisters in Christ.   I am the mother of a son who one day may himself feel a vocational call, if that is God’s plan for him.  I am a member of a Church begging for new vocations, more priests, pleading with Matthew 9:38 that the Lord will send more laborers to the harvest.  I may not be a seminarian, but I most certainly have a stake in the lifeblood of the Church – as is true for all members of the laity, men and women, all ages, all abilities, all neurotypes.

It does not matter who wrote this book or who endorsed it – by name, anyway.  This is not anything personal.  My observations are global, pointing to the big picture, and casting no blame on anyone in particular.  I pray that those reading this will follow likewise in seeing the system view rather than seeking out individuals.  We are all members of this same Body of Christ, with the same mission of actualizing the love of Christ in the world we live in.

In short: This book, Autism and Holy Orders, may fairly be characterized as a de facto policy statement of sorts, written in conjunction with and on behalf of Church leadership.  It makes public the working model which the Church holds on what autism is and how it is to be lived.  It bears the seals of approval by representatives of the Catholic hierarchy as well as those of Catholic religious orders, Catholic academia, Catholic seminaries, the Catholic diaconate and the secular field of clinical psychology.  This takes in a very wide swath of predominantly Catholic representation from on high, and one can assume that endorsements at this level trickle down through the ranks to each tier of leadership and staffing, eventually shaping the actions and opinions of staff and volunteers at even the parish level.

It is fair, then, to conclude that the prevailing approaches, attitudes, and beliefs of our Church toward autistic people are at least twenty years behind where the current and reputably acceptable understanding of autism is in the rest of academia, the healthcare and helping professions, and actual lived experience.  And this is a huge problem.

One need conduct very minimal research to see how autism has progressed from grossly misguided and stigmatizing treatment to much more humane, compassionate and accurate approaches informed by neuropsychology and the collective stories of actually autistic individuals.  The collective dialogue about autism has grown substantially and the global understanding is slowly coming around to see that autistic people thrive when allowed to be autistic, rather than following a pathology-driven model of symptom elimination.  Though the challenges of an autistic neurotype remain the same, contemporary approaches draw on personal assets rather than deficits and encourage autonomy through identifying those skills which would be most helpful to each individual.  Emotion regulation, distress tolerance, interpersonal effectiveness and coping ahead are skills that any person needs, but can also be tailored individually to fit the configuration of autistic people based on where they are finding the most difficulty. But, lest this paint too rosy a picture, I will add that it is still an uphill climb.  Meltdowns, burnout, shunning and stereotypes still exist all over the place.  The difference is that we as a collective society have more tools and better ways to frame things than we did twenty years ago, so there is better hope for better growth and thriving than in the darker days of autistic history.  People finally know that Rain Man is not the last word on, or the most accurate picture of, autistic life.

Enter, then, this book – published September 1, 2022, as a long-awaited guide for the Church in shaping and forming autistic men for holy orders.  In fact, once I started reading it, I realized the Church has waited TOO long to start looking at these questions.

Again, I emphasize that I read this book as a member of the laity who takes my call to pray for priests and vocations seriously, and as the mother of at least one person who may – who knows? – one day hear that call for himself.  And so it is that I speak up as one who is very concerned, who wants very much to support priests and vocations to religious life, and who recognizes that the pool of prospective members likely reflects the same demographics as we see in the mainstream population.  If we go with the one-in-44 estimate, debatable or not, we can safely assume we have several autistic people among us in every parish, in every diocese.   How many autistic people are called to religious vocations?  Only the Holy Spirit can answer that.  But it is our responsibility as fellow members of the Church to support all vocations, including those stirring in autistic individuals.

Thus, I raise the alarm.

Alarm? Isn’t that a bit melodramatic?  Not really.  Take a look at this review of the book by an autistic priest, and tell me afterwards if I am being dramatic.  Considering he was ordained 35 years ago, it is fair to deduce that he came of age during that time when autism was less understood and widely pathologized.  His words suggest that he has endured a lot of pain as a result.  While we can shrug and say that this was an unfortunate matter of people not knowing about autism like we do now, how can we reconcile that when this book – filled with the same pathologizing characterizations – was just published?

This needs to stop.

I have no answers.  I have no idea how to bring the Church up to speed so that she can work hand in hand with her autistic members in a way that is accurate, compassionate and truly nurturing of who we are.  I just know that if this book is commensurate with a policy statement, we’re in trouble.  I would feel the same way and make the same statements if a book like this came out in any other context – school boards, medical societies, secular academia – and I would issue the same call that I am now.

The Church is in the dark about autism. We, as autistic Catholics, need to be light.  We need to be visible.  We need to be who we are, as brightly as possible – because the Church is not seeing clearly.  The Church is stuck in the same rut that paints autism as a burden, a puzzle, something to be swept under the rug or passed over as quickly and deftly as possible so as not to draw attention to anything that looks or sounds different.  The Church is not comfortable with us as we are.  And this is not just limited to holy orders; ask any autistic person who has tried to participate in ministries, leadership roles, youth groups, sacramental preparation, faith sharing… and found them inaccessible, impenetrable and immutable.  Has nobody yet heard of universal design, or is it too scary to think of introducing something new at the institutional, diocesan, seminary or parish level?

We autistics have spent our lifetimes learning ways to grow and thrive and accept that non-autistic people do things differently.  We have been explicitly taught scads of social skills and social graces, scripts that help us come across in ways that supposedly pass muster so that we are taken seriously.

It’s time to model this for the Church.

It’s time to model compassion, active listening, comprehension, acceptance.  It’s time to model patience with a system that appears to us as lacking empathy, slow to understand and rigid in its ways.   But hey… we’ve been there.  We have both the experience to teach and the capacity to forgive.

If I may, allow me to paraphrase Ross Greene in closing: The Church’s stance on autism is challenging because it lacks the skills to not be challenging.  Skills do not just drop out of the sky; grace, however, makes all things possible.  As autistic Catholics, our mission seems clearer and clearer: We must be the light that is currently lacking. We must pray, be visible, and be the truth that makes up for twenty-plus years of systemic turning away and not seeing the pastoral necessity of understanding neurodiversity.

May God help us all in our mission.

Dr. Hahn: It’s not funny

by Aimee O’Connell

 

I have recently become aware of a book just published, Autism and Holy Orders, touted as a long-overdue resource for helping autistic men navigate the process of priestly formation, ordination and service in the Church.  I could not wait to start reading… until I hit the foreword by Scott Hahn.

Scott Hahn’s name always brings a smile to my face.  I have an entire shelf devoted to his books.  I have attended his conferences and speaking engagements.  I relish with guilty pleasure every single Dad joke he has made and refer many, many people to his writing, as I feel he has a gift in being able to explain Church doctrine in a way that is memorable, relevant and relatable to anyone.  I don’t know him personally, but it’s no exaggeration to say he is a part of my Catholic fabric.

The foreword made me gasp.

In an instant, this well respected, well recognized, NON AUTISTIC writer / speaker / scholar, to whom so many look for guidance and encouragement, dismissed the condition of being autistic as a fad, a marketing ploy, a source of confusion.  His flippant tone made me want to shrink, mask, camouflage, hide.  If he said this in one of his public talks, any autistic person in the crowd would wish to become instantly invisible.

He goes on to qualify his thoughts along the lines of some of his best and brightest students have had autism, and it pains him to see them suffer needlessly from a lack of understanding.  His departure from Dad jokes to full-on irony hit me like a hard smack in the face, and I’m still not laughing.

The rest of the book, I’m sad to say, followed suit.  You can read my review here.  On the one hand, it’s a consolation to know that a book like this has a very narrow target audience, so Dr. Hahn’s insensitivity won’t necessarily be felt by as many people as it might if he wrote this in a more mainstream book.  On the other hand, how many autistic people know what sort of attitude Dr. Hahn holds toward us, and perpetuates – knowingly or unknowingly – through his example?

Certainly, Dr. Hahn is entitled to believe and feel whatever he does.  It is not my place to police his comments.  However, it is within bounds to remind everyone who is not autistic that autism is no picnic.  We aren’t broken, yet people still look at us that way.  Alexithymia and sensory anxiety still make it very difficult for us to feel we are “enough” in the eyes of God, let alone the eyes of the Church.  Our intellect may know that God loves us as we are, but our bodies send signals of constant doubt which we have to consciously recognize and counteract if we want to maintain any kind of spiritual life.  It is a thousand times worse when our community sends us signals that feed this doubt (… such as when a renowned Catholic speaker belittles autism as a fad).  And, it’s amazing to see that even the people who consider autism a disability still speak about it as though they know everything about it, yet have zero knowledge of what it’s like from the inside, or any seeming desire to truly listen to those of us who talk openly about it it (… especially if they so quickly dismiss that as attention-seeking).

Dr. Hahn: It’s not funny.  I’m not laughing.  I pray that you may grow in compassion, offering Jesus’ prayer on your behalf: “Father, forgive him; he does not know what he is doing.”

 

 

From The Anchorite: An Open Letter To My Beloved Church

An Open Letter To My Beloved Church

By Fr. Mark Nolette

 

To all Catholics, and all people of good will: May grace and peace be yours from the Father, through the Son, in the unity of the Holy Spirit!

I am an autistic Catholic priest.

My unusual identity gives a particular twist to how I am called to live out my priesthood. In the ancient world, one of the images used to describe the priest was pontifex, Latin for bridge-buulder. We still use this term when we refer to the Pope as the Supreme Pontiff. The role of the priest was seen as building a bridge between divinity and humanity. Since Jesus Christ, by His Passion, Death, and Resurrection, reconciled us to the Father in the Spirit, He became known as the true High Priest, the ultimate bridge-builder between God and humanity.  All Catholic priests, from that time on, have been given a share in His work of bridge-building. Some exercise this in parish ministry. Others serve as hospital or prison chaplains. Still others dedicate themselves to specific groups of people who are in need of shepherds and bridge-builders.

I had been in parish ministry until the effects of my autism and my growing sense of a calling to devote myself to a more contemplative form of priesthood led me to retire from parish ministry. However, my calling to build bridges remains. The Lord has shown me that an important part of my vocation now is to be a bridge-builder between the Lord, the Church, and autistic people. I seek to do this through this blog.  I seek to do this through the Autism Consecrated website. I seek to do this through a life devoted to prayer as a contemplative hermit in the Lord’s presence. It is in this role as bridge-builder that I address you now.

Autism is considered to be a disabling condition. If you are diagnosed with Autism Spectrum Disorder and meet certain criteria, you can qualify for Social Security Disability in the United States. As a nation and as a Church, we still struggle to make our churches and public spaces accessible to people with disabilities in general. Many of our churches may have wheelchair ramps. Some may have people who can interpret the words of the Mass in sign language for our deaf members. It’s the rare parish that offers more than this.

What about the needs of autistic Catholics? Most of the books written (so far) on autism and Church have been written by Protestants.  Those written by Catholics are chiefly focused on how to adapt a faith formation curriculum for autistic children.  People forget that those children grow up! A few parishes have set up “sensory-friendly” rooms (anti-cry rooms, so to speak), separate from the main worship area. These rooms feature (ideally) softer lighting, lower audio volume, and a TV screen for watching Mass.  Having spent time in one, I can say that such rooms cut both ways. On the one hand, they are a positive help. On the other, people who use these rooms are easily forgotten by the parish community, even its leaders, because they are unseen. A few dioceses are trying “sensory-friendly Masses”. These are Masses in parish churches, in their usual worship space, which feature lower audio volume, softer lighting, and other tweaks. These Masses are a step in the right direction.

The biggest challenge, however, isn’t about buildings or programs or even sensory input. It’s about attitude. Do you want us? Do you, my dear fellow Catholics, want us autistic Catholics as part of your faith communities? If the attitude is there, the rest will follow.

This is an extremely important question. One recent survey has shown that over 80% of autistic Christians (Catholic, Protestant and Orthodox) do not attend services in their local churches. This is the highest percentage of non-attendance of any group with a disability that still leaves them capable of going to church. Slipping into my logical brain, I would assume that this statistic alone would make autistic Catholics (and other autistic people) a prime focus of the New Evangelization. I would assume that this would make autistic Catholics an ideal target for the New Apologetics that Bishop Robert Barron and his Word on Fire community speak about. The harvest is indeed rich. Where are the laborers?

When I could see that I could no longer do parish ministry, I proposed to officials in my diocese that I could be a consultant or liaison for ministry to autistic people in my diocese. No one showed interest in this. Diocesan officials say that the local parishes should do something about this. Local parishes say that they lack the resources for this.

That is not all. I regularly hear from autistic people who have tried to connect with their parishes and find that they are ignored, their needs minimized, and their behaviors (over which they may have little control) ridiculed or mocked – even by pastors and lay parish leaders. Many autistic Catholics end up feeling like they have to pastor themselves. Is this right? Is this what Christ had in mind for His Church?

It doesn’t help that autism is seen by many as a “mental illness”. Even in 2022, when people see the term “mental illness”, they are much more likely to think of serial killers and mass shootings than the story of a group of Down’s Syndrome adults who had a foot race in a Paralympics.  The ones who took the lead then slowed down so that all the runners could cross the finish line together and win together.

Let me be blunt. If we autistic people were all wealthy, parishes and dioceses would beat a path to our doors. If we were members of a favored group in our culture, some Church ministers would reach out to us, if only to score points with society as a whole. Far too often, Church leaders take their cues (even without realizing it) from the prevailing cultural standards and not from the Gospel. We matter only if the surrounding culture says that we matter.

The Gospel has a different narrative to propose to us. Christ offers us the parable of the man who had a hundred sheep. One of them runs off. In first-century Palestine, anyone wealthy enough to have a hundred sheep could easily replace the missing one. Yet the shepherd leaves the ninety-nine in search of this one sheep that had no worldly value.

Saint Paul gives us more guidance. The community he founded in Corinth was beginning to think highly of itself from a worldly point of view. They believed that they had “made it” in the world, and looked down on those (even of their own Christian community) who had no worldly status. Saint Paul reminded them, first of all, that most of them had little worldly status when they first embraced the faith. Moreover, they are now members of the Church, the Body of Christ, where all cultural values are inverted. Those who seem to be worthless in the culture’s eyes are all the more valued by Christ and should be all the more honored by all His disciples.  Every Catholic community, from then until now, shows its understanding of the Gospel by how they love those people who are deemed to be lowest in the society around them.

Autistic people, at first glance, may not seem attractive or promising candidates for a Catholic community. We have trouble reaching out and expressing our feelings, even feelings of love. We may seem cold and uncaring to those who do not know us. We can move in odd, repetitive ways, make sounds unexpectedly, or have meltdowns in public. We wear headphones to church to protect us from the audio volume (which may be too loud even for you) and we are accused of disrespect as you assume we’re listening to music.

If there is anything you can learn about us, let it be this. We are like you in many ways.  The things that bother you, bother us. Where we differ from you is not in kind, but in intensity. Imagine an equalizer. In some areas, our settings are like yours. In others, the settings are turned way up – or way down. Some of us are extremely sensitive to sounds, or colors, or certain smells or the feel of certain things. Some of us are very sensitive to inconsistencies and incongruities and cognitive dissonance. If you claim to believe one thing and live another, we see it immediately.  Given our lack of social skills, we might even say so.  This may not ingratiate us to you!

Nevertheless, we have souls and hearts.  We are human beings. Christ died for us as He did for you. Our salvation is as important as yours.  The fact that we are human, like you, should be more than enough for you to reach out to us and work with us to help us become part of our Catholic communities as best we can.

Now I’ll let you in on a little secret. We have a special gift that comes from being autistic. Think of the odd behaviors we may exhibit – the movements, the noises, the meltdowns, the anxieties. Some of these, at least, are in fact given to us for the community as a whole. How so, you ask?

Think of the old story of how miners would bring caged canaries with them into the mines. The canaries were more sensitive to poisonous gases than the miners, so the gases affected the canaries first. When the miners saw this, they knew they had to leave that mine, and quickly.  In the same way, if an autistic person reacts very strongly to the sound volume, or to poor sound quality, this is a problem that will affect everyone eventually. Rather than blame the autistic person, look at the problem this person perceives. If an autistic teenager can’t deal with youth ministry as most parishes do it, maybe the problem is with the way youth ministry is done. I read about a teacher who decided, as an experiment, to change the way she ran her classroom to accommodate her two autistic students.  When she did so, she found that everyone did better, not only the autistic students.

What the world deems foolish is often wisdom before God.

There is much more I can say; much more I can offer in regard to all this.  If you want to pursue this, you’ll find some other posts in my blog and a lot of the material in Autism Consecrated to be most helpful.  Please remember: Christ died for us autistic people, too!

May the Lord generously bless all of you, all that you do and all that you are!

Father Mark

Three Simple and Meaningful Ways for Parishes and Churches to Promote Autism Awareness in April (And Beyond)

(Note – the graphic is designed primarily for Catholic viewers and readers, but the text here has been adjusted to apply more universally to any Christian worship community. Feel free to share in your own circles!)

Three Simple and Meaningful Ways for Parishes and Churches to Promote Autism Awareness in April – And Beyond!

  1. Plan one homily or sermon acknowledging God’s wisdom in creating neurodiversity: noting the role of autistic people in the Body of Christ, dispelling myths many people still have about autism, and setting the tone for the parish as a place that recognizes and cherishes its neurodiverse members – seen and unseen, heard and unheard.

 

  1. Consider offering a sensory friendly worship service as part of the regular services one weekend… then, consider how that could become a recurring option throughout the year.

 

  1. Host a brainstorming session for autistic people in the church, asking what would make it easier to participate in church events, sacraments, leadership and ministry. Plan this so that input can be received in writing or pre-recorded as well as in person, to include input from non-speaking persons.

 

First, Define “Leadership.”

When addressing the question of where autism fits into the Church, it has been said – and rightly so – that inclusion is not just a special project, but rather, should be something that flows from the top down.  For this to be authentic, then autistic people need to be included in the leadership of that community.

While this is easily said, it is not something that is easily attainable.  How so?

When we look at the question of how autistic people can have more representation in decision-making, the first step is to ask what is meant by leadership.  People normally think of the leader as the one on top, the one who is in charge.  That is one kind of leadership, but not the only one.  Let us use The Lord of the Rings as an example.  Aragorn is the one destined to be king.  He gradually moves into that role.  However, Gandalf also exercises a great deal of leadership though he is not a king or ruler in the usual sense.  As a wizard, he is an outsider – not man, elf, dwarf or hobbit; yet all recognize his wisdom and discernment, his prophetic leadership (if you will).

As a rule, autistic people do better in Gandalf’s role than in Aragorn’s.  But that requires a culture that values that kind of insight and prophetic speech and therefore values those who have such gifts.  In a parish, the pastor may ultimately be in charge, but others also exercise other kinds of leadership.  Deacons lead in one particular way.  The parish council is meant to exercise another kind of leadership as an advisory group to the pastor, assisting in forming the parish vision and in discerning how best to implement it.  All of this requires an openness from the pastor and the parish as a whole for collaborative leadership, and a focus on the individual gifts of each participant, rather than defaulting to pre-defined ideas of what “leadership” roles should be.

Autistic people are very well-suited to act as advisors and consultants to those in roles of parish and diocesan decision-making.  This is one way in which we can exercise a kind of leadership that is consistent with our autistic nature, valuing the gifts we bring rather than requiring us to conform to the system already in place (which, many times, excludes people like us).  A first step toward inclusion at the leadership level, then, is to invite autistic input at every level, starting with the roots – that our ideas and needs may permeate whichever entry point our comfort level may be, and be championed upward from there.

 

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.