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.

 

PDA and Lent

Here is a very interesting question: How can we troubleshoot between having a PDA profile and the necessary demands presented by Lent?

 

There are a few guiding thoughts to help tailor Lent to the demand-anxious neurotype while keeping the intention and integrity of the season.

 

Creativity: Try to plan for Lent as a response to a design challenge.  The Church outlines three staple ingredients: Prayer, fasting and almsgiving.  What we do with them, how we bring these to life and in what way, is up to us.

 

Autonomy: For the most part, we get to decide what we do and how we do it.  The boundaries provided by the Church pertain to Ash Wednesday and Good Friday (where we are asked to begin and end the season with meatless fasting), and Fridays during Lent (where we are asked to abstain from meat).  We might think of these as signposts and checkpoints employing the method Our Lord used in preparing for His public ministry to mark off this time as our own period of sacred preparation.  We might also think of how we find ordinary places closed to commemorate certain occasions every year, and, likewise, our regular meal habits are “closed” on Ash Wednesday and Good Friday, and “partially closed” on regular Fridays during Lent, in commemoration of Our Lord’s sacrifices.

 

Low-Key: As with everything else, our Lenten practices will be more successful and meaningful if we strive to keep them nonchalant, low-impact and not all that drastic.  Aim for small steps rather than big ambitions.

 

Short-Term: Yes, Lent is 40 active days (and 46 days all together).  We can still make our plans day by day.  With demand anxiety and time blindness, sustaining anything more than a few days at a time runs the risk of not going well.

 

Rephrase: Words like “discipline” and “obligation” can be our downfall.  When we come up against these terms, why not turn to a thesaurus, or an etymology reference?  When we realize that “discipline” means “learning” and “obligation” gets its roots from the concept of giving thanks, the sense of demand is lessened.

 

Flexible terms: Be prepared for multiple contingencies.  Similarly, keep a wide field around the bull’s eye, so that coming close is an acceptable alternative to perfection.

Novelty: Related to creativity, this is a reminder to keep things interesting so that we feel motivated to continue.  Lent does not have to be monotonous.  Change it up often enough to keep going.

 

Menu approach: Sometimes, there are too many choices.  Sometimes, there is not enough structure.  Yet, too much structure feels confining and restrictive.  One way around this is to make a Lent menu to consult day by day, whereby we strive to balance our practices between variety and predictability.  A menu also allows us to put a check mark next to the things we’ve done so that we can see our progress and where our strengths are.

 

Spark love: Similar to that other phrase used in a popular and patented home management program, try to keep those things in our routine which “spark love” in our hearts for God, and move on from those things which do not.  Love is a good choice here because it can be both joyful and sacrificial.  When we strive to do things for the sake of love, chances are, these will be things we will find worth doing.

 

Equivalent substitutions: Many Lenten practices can become prickly, such as dietary changes or trying to give things up which help regulate our functioning.  Being hungry is one thing; being hangry is another.  We are sometimes not able to fast the way others can, and this is where creativity comes to the rescue again.  The idea is not to circumvent what’s difficult, but rather, to decide prudently what is and is not possible.  When we simply cannot fast, we can calculate the equivalent and make an offering with what we can – such as, matching (or exceeding) what we eat that day in a donation to a food pantry, or donating money/time-per-calorie to assist a cause in our area – either in person, or through prayer, remotely.

 

Pilgrimage: We can’t always make a retreat, keep up with Bible studies or attend prayer services.  We can, however, design our own spiritual pilgrimage in the form of any kind of sequential progression during the Lenten season.  We can move forward on this at our own pace, some days a little and some days a little more, and some days not at all.

 

Growth mindset: Instead of looking at what we do as pass/fail, growth mindset accepts that we do not yet have all the skills to be successful all of the time, but believe we can gradually move in the direction we want to go.  Essential to this is resolving not to compare ourselves to others or set our progress by others’ standards.  Curiosity, openness, humility and freedom from pressure are our tickets to growing in our spiritual lives as much as in any other area.

 

May God bless our efforts and reveal His love to us, in all that we do this Lent!

 

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!