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.

 

Fixed: Email subscribers glitch

A note to email subscribers: We are attempting to fix the glitch which has prevented our recent notifications for new blog posts from sending.  If you have not received our latest notifications, we direct your attention now to our two most recent posts:

April: A Puzzling Month 

Autistic Egypt

Additionally, we invite readers to see Fr. Mark Nolette’s guest blog post on the National Catholic Partnership on Disability webpage: Autism Appreciation: Lessons from Horton Hears A Who

Thank you!
Aimee O’Connell – Autism Consecrated

The Pastoral Needs of Autism: Healing Prayer

by Aimée O’Connell

 

To those expecting this post to contain words meant to step in and undo anyone’s autism diagnosis, we apologize: our subtitle this week begins with a gerund, not an adjective.  We aim to suggest ways our manner of prayer might itself be healed.

Why?  Ask any autistic.  There are few things more alienating than hearing from members of our faith community that we are broken or unacceptable as we are.  Yet many prayers for autism purport to fix what the community finds wrong in us… to cure us of the things that seem frightfully different… to imagine what we want for ourselves, without asking us if that is correct.

This is not to say that intercessory prayer is wrong.  On the contrary!  Praying for one another is a beautiful and life-giving aspect of community and belonging.  Likewise, it is unlikely to ever be without need of prayer, in one way or another.  Prayer, in its purest form, is both conveyance of gratitude for and acknowledgement of our interdependence as a faith community.  But more often than not, autistic people (and many others with disabling conditions) hear how little our community knows us in the prayers offered on our behalf.  Not only is it disheartening to be so overtly misunderstood, but it is starkly marginalizing.

In fairness: Yes, there is a time and a place to pray for reversal of illness, for recovery of wellness and for remission from the kind of suffering that impairs our quality of life.  Yes, it merciful to pray for those experiencing pain or distress.  Sometimes, the anxiety and sensory overload secondary to autistic wiring falls under that category, to be sure.  But then, our prayer ought to focus on our merciful wish to relieve distress, and not to condemn the person for being distressed in the first place.  To wit: “Heavenly Father, come to the assistance of this person in their hour of need” upholds the person’s dignity within the community, as does, “… heal this person of that which causes them pain.”  Contrast that with, “… remake this person in Your image to be whole once more” and “… heal this person of the autism which imprisons them,” and you have a declaration of unfitness in the community, condemning a neurological type which, by itself, is neither physical disease nor mental disorder.

The following questions are meant to help illuminate the spirit in which we might offer prayer, regardless of who we are or what our particular conditions might be.

 

  • Does our prayer focus on alleviating any discomfort or dissatisfaction WE FEEL, or is it focused on needs expressed by the person we are praying for?
  • Does our prayer PRESUME TO KNOW what the person wants us to pray for, or is our prayer based on actual, known, expressed needs of this person?
  • Does our prayer echo GENERALIZATIONS we have heard about a particular condition, or does it reflect how we know this person as a unique individual?
  • Is our prayer rooted in any FEAR or DREAD of the situation? Is this fear or dread ours, or the person’s?
  • Does our prayer surrender to asking God what is best for the person, or does it seek to define what WE think would be best?
  • Would the words of our prayer be viewed as uplifting in love and dignity, or listing our grievances and pity, when heard by the person we pray for?
  • Does our prayer portray the person as a Beloved Child of God, “fearfully and wonderfully made”? Or, does it presume fault or defect?
  • Does our prayer reflect our gratitude for the gifts this person brings to the community, or to the burdens we feel from this person’s struggles and needs?

 

May these thoughts guide us on our journeys toward healing the way we pray… for ourselves, for others, and for our community.

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!