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!

 

The Pastoral Needs of Autism: Not-So-Great Expectations

The Pastoral Needs of Autism: Not-So-Great Expectations

by Aimée O’Connell

 

I write this from the United States, where many Catholic churches are in the early stages of re-opening after months of pandemic shutdown.  The health departments of each municipality have strict guidelines which churches must follow to ensure their ability to resume public gatherings, and the sheer magnitude of tension, both good and bad, is palpable.  People are desperate to have their normal routines back.  Many remain afraid of virus exposure.  Others feel the restrictions are excessive.  I’m not here to debate that, but the fact is, emotions are very high right now, and as such, the conditions under which we are returning to the routines we knew are strict, tense and rigidly enforced.

Against this backdrop are those in the autistic population who have high resting anxiety.  That phrase, “resting anxiety,” is itself an oxymoron we live with as ordinarily as we breathe.  Our perceptual system is fine-tuned to pick up every signal and report it to the brain as something needing immediate attention.  We “rest” very anxiously.  For some of us, it looks like a fast idle, never being comfortable sitting perfectly still.  For others, it comes across in constant thought, ruminating, second-guessing, running scenarios, anticipating, and exhausting ourselves interiorly.  Anxiety saps our coping resources as quickly as they build up.

There are many in the autistic community who become overwhelmed by the pressure of expectations.  It stems from the need for more time to fully review and comprehend the expectation and then match that with our ability to respond.  Within our response, there will be aspects we know we can do and aspects which will challenge us to push ourselves, to try what we do not know, or to attempt tasks at which we have previously failed.  We might compare it to the outrageous competition shows like American Gladiators and American Ninja Warriors, or even the lower-key shows like Minute to Win It, in that expectations can feel like disproportionately outsized obstacle courses or nonsensical, complex challenges that have to be completed under the pressure of time regardless of our ability to do so.  While these game shows are staged as fun, there is no fun whatsoever in the autistic home version, especially when there is no reward to what we face and no studio audience rooting for us.  In fact, more people than not tell us to “get over it” and “get going.”

There must be help for this kind of anxiety in the diagnostic community, right?  Well, yes and no.  As enlightened as practitioners are in our time, our culture as a whole is not very supportive.  Anxious people are mocked colloquially all over the place.  People who rely on routine are still called “anal,” thanks to Freud’s work one hundred years ago.  People who need more time to process, comprehend and shore up our responses are called “slow,” or “bad team players,” or “lazy.”  Now consider that people who feel genuine terror and overwhelming pressure when considering expectations can actually do okay if we are given time to let the tidal wave of anxiety crash and subside, to let our emotions spike and return to baseline, then to work either ourselves or with an advocate to form a plan for rising up and meeting these expectations.  Sounds reasonable, and supportive, and cooperative… right?

The problem is, that tidal wave of anxiety ain’t pretty.  Nowhere in human history is panic experienced as something polite, refined and orderly.  People fleeing giant monsters are never portrayed as pondering their options quietly and discussing plans in calm voices.  The same is true, interiorly, for those of us with expectation anxiety.  The pressure triggers panic, and we react accordingly.  Oftentimes, that is fight (explosive anger), flight (storming off) or freeze (unable to act).  And, those in our vicinity, who are able to cope where we are not, see us as out of control and refusing to calm down, which creates more tidal waves.

Compounding this is the likelihood that when we anticipate this and ask for help ahead of time, we are dismissed as feeling entitlement, seeking to be excused or above the law for inquiring about accommodations and exceptions.  The fact is, we are most often NOT coming from an attitude of superiority, but just the opposite: we feel keenly inferior.  The bulk of our panic is not a response to the expectation itself, but rather, the menace of our self-accusations.  We know we are different, we are weaker, we are easily confused… and self-loathing is a harsh taskmaster.  We are usually not very loving towards ourselves.  Our reflexive response is shame at our inadequacy, especially when we see everyone else gets it and can do it without difficulty.  If they can, why can’t we?

Historically, diagnostic terminology has been rooted in the reactions of the community, not the individuals experiencing the anxiety.  We have categories of “personality disorders.”  We have terms like “oppositional” and “defiant.”  Even expectation anxiety has been recognized (good!) but termed “pathological demand avoidance,” which just perpetuates the shame rather than solving anything together.  Sadly, such terminology validates our self-loathing.  Diagnoses may help the community feel like we have named the beast so that we can tame it, but the problem lies in the semantic branding as troublemakers, both in the eyes of the community and in our own minds.

Where does this leave us?  How are we to get better… how are we to learn to love ourselves in our needs, and maybe break the cycle of self-loathing that manifests in outbursts… when this expectation is not yet modeled by the communities in which we live?  While the world rages about outdated concepts and terminology in matters such as policing and racial discrimination, the mental health arena lags far behind.

I am not going to deny that expectation anxiety is problematic.  It most certainly is, and in large public gatherings, that tidal wave of anxiety plus self-loathing creates chaos and can provoke dangerous situations.  High emotions need to be contained safely, no matter who we are, for the good and safety of ourselves and the entire community.  But there is no reason we cannot strive toward looking critically at our broken system with love.  It is a radical suggestion to begin with such seemingly subjective sentiment as “love,” but if we stop to realize that love is a choice of our human faculties and not merely an emotion, perhaps we can find a place where the mental health system can become a healing model.

Back to the beginning: This month, many parishes are opening again, with high tension as people’s expectations are enormously magnified.

Many people in the autistic community are experiencing expectation anxiety.  We are panicking at the thought of wearing masks for that length of time… of following marked spaces in orderly lines… of being told that deviations from the rules cannot be tolerated… of having our normal coping helps, such as lobbies and bathrooms and cry rooms off limits… of having extra staff watching us… of knowing that we are only allowed to be there if we can guarantee our best behavior… and we are finding it too much.  We come down harshly on ourselves and take the blame before it is even issued, and just stay home.  So much for inclusion.  Is it anyone’s fault?  No.  But is it anyone’s responsibility to help?

Only the community can decide that.

And then, when these strict routines begin to fade back to ordinary time once again, will we remember this discussion, when an autistic person has an outburst during regular activities, when internal tension builds to a breaking point, when the ability to take a bathroom break means the difference between exploding and calming down?  Or will we go back to sighing and commenting that someone that age ought to be able to sit for thirty minutes without excusing themselves, in the earshot of the person whose inner critic thrives on that kind of validation?

Only the community can decide that.

Autism In The Pandemic: When We Don’t Conform

TL;DR: Crisis situations amplify society’s demand for conformity, which under normal circumstances is already a challenge for autistics.  The thoughts and feelings of divergent thinkers are valid and welcome even when these fall outside the norms being set by the pandemic.

This post, I’m sure, is not for everyone.  It may be for some, in parts, and others in other parts.  It is not meant to be a universally applied patch, but I offer it for those who will find it helpful.

Over the past three weeks, great good has unfolded in the world as people come together and support one another in many hours of need.  But there are social perils afloat in the community as we rally together.  Without exaggeration, some autistics are feeling now more marginalized than ever before.  But, why?  Can we really point a finger at the pandemic?

Yes.  Crisis situations amplify society’s demand for conformity, which under normal circumstances is already a challenge for autistics.  Furthermore, the ways we are not easily understood outside of crisis situations can become greatly magnified when tensions run high.  Yet, our needs have not changed, and we cannot put them on hold because everyone is somehow expected to cope with valor “because it’s a crisis.”  It is just as acceptable to be needy now as it was before the orders came to postpone all nonessential matters.

Another point to address: Autistic people do not automatically feel vindicated by either “stay-home orders” or “social distancing.”  In fact, many of us are keenly aware of how this new way of living is creating great pain and frustration for ourselves and others, and for us to wish that on anyone is absurd.  Autistics do not routinely stand six feet from our friends… many of us do enjoy hugs, when we expect them… and no, we have not all longed for the day when we are ordered to stay home.  (Some autistics are even extroverts who are struggling greatly right now!) There are many days autistics will retreat to recover our spent energy, but being part of the community is as important to autistics as anyone else.  If anything, autistic anxiety is likely much higher with all the new and rapidly changing rules, frightening images, panic buying and shortages of supplies we need, and the tremendous suffering we are now aware of, day after day.  Also, those of us who need a set amount of personal space to stay regulated are finding it most challenging to be home with other people, day after day, without the ability to have any truly “alone” time.  The assumption that quarantine is an autistic’s dream come true brings us right to the brink of crying foul in the name of cultural appropriation.

How, then, are autistics adapting to the new normal?  As best we can.  All these changes in our routines take time to assimilate and process.  The pervasive sense of fear is unnerving wherever we go, so our anxieties are likely a lot higher from that alone.  And then there is this: Video messaging is not easy for everyone.  Many (not all) autistics find Skype and Zoom highly provocative of our natural social anxiety.  Now, instead of only feeling self-conscious, we get to see that awkwardness in real-time.  If we have been told repeatedly that our poker-face puts people off, seeing it is not only awkward, but can feel shameful… even though it ought not to be.  It is ridiculously hard to navigate smalltalk on the grid screen, and even more so when the smalltalk is now centered on the pandemic.  In face to face encounters, autistics often go inwardly on “screensaver” during smalltalk as a way of coping and hanging in until a relevant topic begins, but we have little choice when we are on display.  With video chat now the preferred way of maintaining relationships, school and employment, those who are forging through are doing so at great cost to our energy level.

As far as the challenge of thinking outside the pandemic: It is okay to NOT feel afraid, to NOT enjoy online events, and to hold different and creative ideas for carrying on and engineering what we ordinarily would have done.  This one seems obvious, but it is huge and vitally important to say.  Why?  Because our social environment has become greatly limited to online interactions and brief actual conversations.  The same dynamics that marginalize people in everyday situations are now highly concentrated and nearly unavoidable.  Here’s how:  A pandemic is, by definition, a life-or-death situation.  The majority of any group are the ones who determine the rules for safety and standards of “right” conduct.  When anxiety is high and fear of infection is at play, ordinary allowances for diverse opinions are suspended.  It is how crisis management works.  However, when crisis management takes over the social setting as it has by the need for social distancing, the risk is extremely high for anyone who does not match the standards of the majority to be shunned, both overtly and subtly.  But, what if you honestly feel well prepared, resourceful, and have a good grasp on the expected operating procedures? What if you are not afraid?  That does not mean you are reckless, thoughtless, indifferent or skeptical… but the larger community may portray you that way.  The problem is, those who are not afraid become frightening to people who are already frightened.  One of the common responses to that is accusation and scapegoating.  We have seen enough of these dramatizations on shows like “The Twilight Zone,” when neighbors turn on one another in response to fear and failure to conform.  Autistic or not, there are many who feel confident, prepared and calm… and, therefore, marginalized. It is hard to participate in conversations dominated by fear and rumination when we do not feel that way.  Pockets of friends who are applying themselves to “the cause” turn angry toward the one in the group who feels their energy is better used elsewhere.  Creative ideas challenge the lockdown mentality and become a threat rather than the tremendous help they ought to be.  In short, people are much less likely to “live and let live” when they perceive a crisis at hand, and this is a hugely difficult time for divergent thinker.

Through all of these trials, may we remember that this time will eventually pass.  One way or the other, we and our communities will find ourselves wiser on the other side.  May we continue consecrating our autism, all the ways it shapes our minds and hearts, and trust that these areas of divergence will be gateways for God to form deeper and stronger relationships through our daily doings.

A Word from Father Mark Nolette

(Ordinarily, Father Mark Nolette’s posts appear on his blog, The Anchorite.  If you have not yet seen his page or subscribed to his blog, it is well worth checking out.  Since his post today offers very timely support and validation for the autistic community, I am cross-posting here.  – Aimee O’Connell)

I begin with a statistic.  The New York Times reported this morning that the number of confirmed cases of COVID-19 worldwide, as of yesterday, is 160,000.  About half of these are in China.  On the one hand, if we focus on this number only, it seems rather small compared to the total population of the planet, which is estimated at over seven billion people.  This number is, for the moment, far smaller than the number of people who are infected with a typical late winter flu outbreak.  However, that’s not the number that has experts worried.  They believe that the number of cases will explode geometrically, becoming many times that number before the outbreak peaks.

How many times?

There we find a difference of opinion.  Last week, the New York Times reported on four possible scenarios for how many people in this country could be infected with coronavirus, and how many could die.  The estimates of infection range from 15% to 50% of the population.  The number of deaths range from 500k to 2 million.  The experts acknowledge that containment efforts, if applied, could reduce these estimates.  Moreover, because coronavirus is novel, no one knows if some people might have some immunity to it or not.

The fear we are feeling is not so much about the numbers of people who now have it, a number we can safely estimate.  The fear is about the uncertainty of how many people will eventually get it, and how bad it will be.  Moreover, given that a sizable number of people in this country do not trust scientific or medical experts, that compounds the uncertainty.  Moreover, the very existence of this virus among us makes us feel vulnerable.  All the king’s horses and all the king’s men (and all the king’s money) cannot drive it away.  No wall can keep it out.  We Americans are not used to feeling vulnerable.  This only heightens the anxiety.

What do we have, then? A grave level of fear and anxiety.  An overwhelming sense of impending doom. People grasping at any straw, even to the point of stockpiling toilet paper, in order to feel some sense of security or preparedness.  A sense of panic that may be more severe than the virus itself.

Welcome to the world of autistic people.

What I am seeing, as a priest and an autistic person, looks very much like autistic anxiety.  Some of the reactions I see look very much to me like autistic meltdown.  The anxiety I often feel before a weekend liturgy is something like this.  The anxiety I feel when something unexpected, like a funeral, enters my life is something like this.  The anxiety I feel when some future plan is still uncertain is something like this.  As an autistic person, I have needed to grapple with anxieties like these, learn to decipher them, and learn to live with them.  Therefore, I may be able to offer something from my experience as an autistic person that could help many other people during these trying times.

What have I learned that may be of help to others?

1) Things are not as bad as they feel. Yes, I am well aware of the danger of minimizing the risk of coronavirus. However, my sense is that the opposite is the greater danger; that people will panic and make the danger more than it really is.  Then, with panic in control, people do not think well. They may make choices that make the situation worse.  They may look for people to blame.  Sometimes, when I am celebrating Mass, it can feel as though I were the deer and the congregation were all hunters.  Now, there’s a kernel of truth in this. Social exposure of this kind is difficult for me.  However, it’s not quite as bad as it might feel for me at that moment.  In the same way, coronavirus is a real danger, but it’s not quite as bad as our panic might make it out to be.

2) We are not powerless. When anxiety becomes panic, we feel overwhelmed. We feel that we have no control, no options.  We learn to step back when this happens and remind ourselves that this is not true.  As an autistic person, I know that there are ways to manage anxiety.  There are also ways to address the outbreak and reduce the risk.  In managing anxiety, there are techniques like cognitive behavioral therapy, which help us examine our thoughts and see if they correspond to what really is.  Many people find that a few moments with camomile tea helps them soothe their nerves and be recollected.  Then, when anxiety and panic are more manageable, we can look at the actual situation and take appropriate action.  There are ways to significantly reduce our risk of catching or spreading coronavirus.

3) We must never deny or ignore our needs. This COVID-19 outbreak reminds us of our fundamental vulnerability as human beings.  We may find it difficult to acknowledge this vulnerability, to ourselves or to others.  We may feel the overwhelming temptation to camouflage those weak spots at all costs.  As an autistic person, I am well aware of my own vulnerabilities and limitations, especially in social situations.  Nevertheless, I have found that the stronger and more courageous thing to do is to acknowledge those vulnerabilities to myself and to others.  Paradoxically, this unlocks a strength in me and in others that makes all of us stronger.  Acknowledging our legitimate needs, and drawing healthy boundaries, are essential for our health and survival.  This is all the more true in the stressful situation we now find ourselves in.

4) We are not alone. Perhaps the greatest danger when we feel overwhelmed with intense anxieties, panic, or depression is the sense that each one of us is alone in this.  No one else could understand, we tell ourselves.  In this kind of isolation, we feel weaker.  We become easier prey to panic, depression and despair.  As an autistic person, I grew up with a profound sense of being “different” without being able to name that difference.  There were things about me that others could not understand, and there were things about others that I could not understand.  Though there is truth in this, there is also a danger – the danger of feeling ultimately alone in a dangerous world.  When I find others who share some of these attributes with me, I know I am not alone.  It is important for us all to share our anxieties and concerns with others so that we know we are not alone.

5) We are saved by Love.  Everything I have tried to say is summed up here.  It is Love that saves us.  It is Love that empowers us.  It is Love that assures us, above all, that we are not alone.  It is Love that we need more than any other thing.  And this Love is God.  As an autistic child, I felt more withdrawn from other people than I do now.  The first things to reach me were what some call “special interests” – my love for astronomy, dinosaurs, history, and many other things I began to discover.  Caught up in love for these things, I could easily talk your ear off, whereas I’d be silent most of the time otherwise.  Some see these interests as excessive and pathological.  Not necessarily.  They are meant, for the autistic person, to be a training ground for love.  Learning how to love these things helps us begin to love other people and, ultimately, to love God with that same total devotion that flows from the very marrow of our bones and the very cardiac tissue of our hearts.  All of us, faced with the fears caused by this outbreak, can renew our love for our own interests and, especially, for God who is Love.  It is this Love that ultimately frees us from panic and fear.  We need to do what we can to open ourselves as fully as possible to this Love.

This is why I have argued, and continue to argue, that we need the Sacraments and, especially, the Mass and the Eucharist at this time.  Yes, we should follow flu protocols and take all reasonable precautions to safeguard ourselves and our loved ones.  However, we cannot deny or ignore our need for Love.  Our need for Christ.  He has told us that we need to eat His Flesh and drink His Blood so that we might have the fullness of His life in us.  Christians of past centuries believed that this need was so fundamental that it was worth risking their lives for it.  That has not changed.  We need the Lord, and we need to follow His own teaching of how we can best receive His love.  Who could know this better than Him?

I leave you with this in the hope that my insight – that our experience of this outbreak parallels autistic experience – will be helpful, as well as my sharing of what I have learned from this.  It may be that this outbreak is a time when people who may have been shunned as eccentric or lacking in social graces may have something most valuable to offer the world.

May the love of the Lord be with us, now and always!