As we mourn in lonely exile here

by Aimée O’Connell

 

Autistic theologian Grant Macaskill, speaking on the difference between inclusion and belonging, says:

 

“To belong, you have to be missed;

to belong, you have to be named,

and enjoyed,

even in bodily absence;

and your absence has to be acknowledged

as an absence only from the physical space

and not an absence from the presence or from the workings of God.”

 

(Excerpted from The 2023 Scottish Episcopal Institute lecture, “Disabling Norms and Acentering Churches: Autism, Long Covid and the Return of the Old Normal” – October 26, 2023)

 

 

Advent is upon us, and we revisit the liturgical theme of waiting in hope: mournful, weary waiting; darkness, yearning for light; the forgotten, longing to be remembered; the invisible, seeking to be known. Advent is a natural fit for neurodivergent people who are already familiar with “exile” in our ordinary lives. All too often, we feel this separation most acutely from the margins of our parishes and church communities, having wandered there after learning we must check our vulnerabilities at the door in order to gain access, and finding the task insurmountable.

Armand Léon Van Ommen, a colleague of Grant Macaskill at the Centre for Autism and Theology at the University of Aberdeen, has published a book addressing this problem, Autism and Worship: A Liturgical Theology (Baylor University Press, 2023). What follows here is Fr. Mark Nolette’s review of this book, which also appears on his blog, The Anchorite.

 

Autism and Worship (A Book Review)

 

Look down from heaven and regard us

from your holy and glorious palace!

Where is your zealous care and your might,

your surge of pity?

Your mercy hold not back!

For you are our father.

Were Abraham not to know us,

nor Israel to acknowledge us,

You, Lord, are our father,

our redeemer you are named from of old.

Oh, that you would rend the heavens and come down,

with the mountains quaking before you!

Isaiah 63:15-16; 19

 

In a recent survey, nearly a thousand Protestant pastors were asked if people with disabilities would feel welcome in their churches. About 98 percent responded yes, of course they would feel welcome. How could anyone dare to hint otherwise? I know of no similar survey done of Catholic pastors, but I have every reason to believe that the result would be the same. Moreover, nearly every convention or workshop that I have seen advertised on the topic of ministry to disabled people always makes it a point to thank Catholic parish leaders for the splendid work they are already doing in this area. Many parishes like to use hymns such as “All Are Welcome” to bolster this conception. We’re there, or so we are to believe. Our doors are open. Ramps are in place. What else is there to do?

When we look at statistics from the point of view of autistic people, however, a very different picture emerges. Disabled people attend Sunday Mass less frequently than the typical Catholic. Some people have physical disabilities that make going to church or being there simply too difficult. Many are shut-ins, and have the Eucharist brought to them. Statistics consistently show us that, of all the varieties of disabilities that are out there, autistic people attend Mass (or services in Protestant churches) less often than any other group of disabled people. This is true even though many autistic people are physically capable of going to church.

 

Why is this? Are autistic people simply too lazy? Are they looking for an excuse to not go to Mass? Do they need to try harder?

 

Since I became involved with Autism Consecrated, I have seen messages from other autistic people who share their experiences of dealing with parish leadership. The stories are heartbreaking. It takes a great deal of faith to continue to seek a connection with the Church when one is constantly running into cement walls of misunderstanding and being ignored. We would all love it if the Lord would rend the heavens and come down, and thus become our shepherd!

Some parishes have lighting reminiscent of interrogation rooms. Some turn up their sound systems way too loud. Many parish communities show no patience or empathy for those who have differing needs. Harsh lighting actually causes some of us pain; it disables us so we cannot stay. Loud sound systems do this for others. Still others are overwhelmed by the sheer number of people and the seeming impossibility of meeting all their expectations. Youth ministry groups meet in loud gyms and presume that all teens love noise and physical activity – the kinds of things that have caused autistic teens humiliation before.

It’s not that we haven’t tried. However, we can’t seem to find the right password to get anyone to listen to us. We propose a sensory friendly Mass and are told that there are too few of us for them to bother with that. Some parishes offer a sensory-friendly room, which is a start, but it keeps autistic folks out of sight and out of mind, and lets everyone else think that all is well. Imagine a family where one child had to eat meals in a separate room, out of sight of the others. Would that child feel like a part of the family?

How, then, can we have a situation where the overwhelming majority of Church leaders believe that their communities are welcoming, while the majority of autistic people feel most unwelcome no matter what they say or do? How can we feel like we matter to the Church when no one will listen to our genuine needs? When no one even misses us when we are not there, or blames us if we are not there on Sunday?

Seeking to address such cognitive dissonance, Armand Léon van Ommen offers us his latest book, Autism and Worship. Dr. van Ommen is co-chair of the Centre for Autism and Theology (CAT) at the University of Aberdeen, Scotland. The other co-chair of CAT, Dr. Grant Macaskill, has already given us the excellent Autism and the Church – as much a must-read as this book, Autism and Worship, is for anyone who deals with community worship on any level.

Autism and Worship is a scholarly work, with plenty of footnotes and an extensive and fine bibliography. At the same time, the book remains readable for most educated laypeople. The writing style is generally easy to follow. Dr. van Ommen is not Catholic, but he cites a number of Catholic authors. He also quotes Vatican II’s Constitution on the Liturgy, Sacrosanctum Concilium. I say this to affirm that there is very little here that is not in harmony with basic Catholic teaching on the Church and the liturgy. In fact, Dr. van Ommen argues that one major factor of the cognitive dissonance that many autistic people feel when it comes to church participation is a refusal to be consistent with the theology and the liturgy that we already claim to believe in.  The other factor is a refusal to listen to and take seriously the stories that autistic people themselves tell.

Too often, as is the case with other kinds of disabled people, the tendency in church settings (and many other settings) is to talk about autistic people and not with them. This habit is based on a medical approach, describing anything that is common to autistic people as pathological in nature, usually without bothering to hear from autistic people as to what such behaviors actually reflect. Most parish communities use the medical model as a justification in the exclusion of autistic people (passively or actively) instead of personally relating to them. In fact, churches do not need diagnoses, workshops or programs to minister to autistic people; they need vulnerability and compassion. As Dr. van Ommen shows, this goes a very long way.

This book begins by offering its readers an orientation to help them best understand the issues at hand. The first chapter deals with the need to be sensitive in the language we use to speak of autistic people. It introduces the emerging field of autism theology and introduces stories by autistic people about how they experience liturgy.

The second chapter wrestles with the nature and definition of autism, showing why the definition has shifted over time. This helps explain the confusion and lack of knowledge about autism today, as many of these explanations of autism exist side-by-side, even in the psychology community. It also shows that there is a real opening for us to speak theologically about autism.

The third chapter offers an explanation for what has become the major obstacle for Christian communities of all kinds to truly welcome autistic people (and others). The obstacle? Most people have been co-opted by the “cult of normalcy”, a phrase van Ommen gets from Lennard Davis and Thomas Reynolds. They no longer value people according to the Gospel, but according to the dictates of the god Normal and the goddess Average. The argument of this chapter is not unlike that which St. Paul makes to the Corinthians who have become divided because they have forgotten Christ and adopted the ways of the surrounding culture. The argument in this chapter is eye-opening and compelling. Once you see it, you cannot “un-see” it.

The fourth and fifth chapters are the heart of this book. Here is where Dr. van Ommen makes his argument from philosophy, theology and liturgy. We learn of the French philosopher Gabriel Marcel’s concept of availability. We are led from there to the Christian idea of kenosis (the self-emptying of Christ) and how this makes real availability possible by anyone who graciously lives this out. This kenosis cleanses us from our fear of deviating from the cult of normalcy and emboldens us to embrace a new (or better, the original) definition of who we are as Church, allowing it to shine forth in all its splendor. This, then, becomes the Church that is reflected in its liturgy, for liturgy (among other things) shows the Church who and what it is. If autistic people (among others) are not truly welcomed in liturgy, the Church is not truly itself.

The sixth chapter tells the story of how one community, the Chapel of Christ Our Hope in Singapore, has been making an effort to truly welcome the autistic people in their midst. This community has about 25-30 autistic members. It tries to live out a theology of availability by listening to autistic people and offering what accommodations it can to help them worship. (It should be noted that such accommodations are not “unusual”, but are no different than wheelchairs, hearing aids, or eyeglasses.) One of the striking things about the experience of this worshipping community is that these accommodations did not involve any change in the structure of the liturgy itself, but were all about changes in the attitudes of the community as a whole and its leaders.

Who, then, should read this book? Autistic Catholics (and Christians in general) will find this book encouraging. Someone listens; someone gets it. Parish and diocesan leadership should read this book in a spirit of kenosis. There is a group of people they have excluded (knowingly or unknowingly) not only from liturgy but from the overall life of their communities. Repentance and conversion are needed. This is no time to maintain the usual spin. In this sense, this book would be a good read for Advent or Lent. Anyone in any kind of training for ministry should read this book. Anyone who would like to begin to see all this from the angle of their autistic sisters and brothers should read this book.

In short, I cannot recommend this book highly enough. I found myself pausing at nearly every page to reflect on some statement or insight. Dr. van Ommen says that he is not autistic, but he has modeled what he advocates. He has listened extensively to autistic people. Their voices matter in this book. It shows. Read it!

– Fr. Mark Nolette

 

The Leaky Cup: A Parable

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

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

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

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

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

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

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

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

 

How do people respond to your leaky cup?

 

Raise your hand if you’re not here

by Aimée O’Connell

Next time you go to church, look around and get an idea of how many neurodivergent (i.e., autistic and/or ADHD) people are in attendance.  It’s a number you’ll want to know if ever you are asked how your parish might offer sensory supports and accommodations for neurodivergent parishioners.

Right away, the difficulty of such a task becomes evident.  Counting ourself, the number is… one? More, maybe, depending on how many of our family members are with us?  How can we truly tell, without falling back on stereotypes?  Somehow, tabulating any “problem behaviors” we see feels unfair… and yet, this is usually how people begin considering what neurodivergent needs exist in any community.  Catechists can usually pick out the students whose sensory and processing needs don’t work well with the way classes and instruction are expected to run, for instance.  Parishioners learn to recognize which little ones have the most difficulty sitting still and staying quiet during the liturgy.  But that only takes into account the younger members of the parish.  Where would we look for the neurodivergent teens and adults?  Youth ministry? CYO? Bible study? Social ministry and volunteer committees?

Mmm… not exactly.

In many parishes, neurodivergent teens and adults simply do not participate.  Sometimes this is voluntary avoidance on their part… and, sometimes, this is the result of participation being discouraged by the parish.

Yes, you read that correctly.

Sometimes subtly, sometimes directly… sometimes by deliberate omission… sometimes by an accumulation of unkind gestures which finally reach a breaking point.  Sometimes by fellow parishioners, and sometimes by parish staff.

It is not an exaggeration to say that a large portion of people who reach out to Autism Consecrated do so in distress and sorrow after being told, in one form or another, that their sensory needs are a nuisance, a distraction, a burden… or a sign of bad character.  The prevailing belief seems to be that autism and ADHD are childhood conditions, and those parishes offering support and accommodations only do so for children.  Teens and adults are expected to either have no further needs or to meet their own needs for themselves.

How can this be? Is it that parish resources are limited, and what few helps exist must go to the children first?

More often, the reason given is that there aren’t any [or, aren’t enough] teens or adults with special needs to justify further supports. Making accommodations for a small number of adults is considered catering, and nobody wants to give preferential treatment to one or two fussy parishioners. Better they should learn how to cope, like the rest of us.

But, you say, maybe the parish does not yet understand what the needs are, and would do better if they had a better explanation!

You’d think.  But it has also been our experience in hearing story after story that these explanations are anything but helpful.  Many neurodivergent people have taken great pains to describe their needs and find ways to meet parishes halfway in finding accommodations for them to be able to attend liturgies and social events.  The response has been tepid at best and callous at worst.  Teens have been cut from youth group rosters rather than efforts made to adapt existing programs.  Adults have been asked to leave Bible study for asking too many questions or taking too long to respond in small-group sharing sessions.  Priests have given homilies sarcastically asking if people leaving Mass early enjoy their early bird dinners and sporting events, when in fact there are some who have left on the verge of sensory meltdown after enduring overload from the lights, music and pressures of having to suppress their neurodivergent needs.  Ear defenders have been yanked from people’s heads for being disrespectful.  When people have asked for basic accommodations ahead of planning meetings and volunteer events, their messages are not returned, and the meetings go ahead without them – finding them afterward branded as a no-show.

Other times, it’s a Catch-22.  When neurodivergent adults have availed themselves of the supports offered, such as a cry room, they are summarily told these spaces are for children, not to be taken advantage of by bored or restless adults looking for more legroom.  Or, parishes have offered a designated sensory support space for neurodivergent parishioners, only to “borrow” the space during Masses for other purposes, acting surprised when someone wants to use the room that was supposed to be for their needs.  Some parishes offer adaptive First Communion prep and pictorial guides designated for children.  A good start, yes, but when those autistic children have grown into teens, they find that there are no similar supports for participation and sacramental prep as teens and young adults.  For that matter, many parishes have adaptive catechetical resources for young children, but nothing adaptive for RCIA.  (In fact, if you search online for “adaptive RCIA,” the results all point to how to make RCIA accessible to children, not adults).

These are not hypothetical situations.  These have all actually happened… and are actually happening.  Many neurodivergent teens and adults have tried their best to participate but find themselves left out anyway.  Many now simply stay home because the combined demand of participation and fielding criticism is too much.

Recent estimates suggest one in fifty adults may be neurodivergent.  That number is likely too low, as it is extremely difficult for adults to be formally assessed for autism and ADHD, even when they show a majority of the defining characteristics of either or both. Some have proposed that a better estimate  assumes one autistic/ADHD adult for every autistic/ADHD child we know.  (See more in the articles linked at the end).  If that’s the case, it’s safe to say that every parish has at least one person with sensory needs, with the actual number being much higher.

It’s hard to count how many of us there are when parishes keep turning us away.  Where is the spirit of John 18:9, “I did not lose a single one of those whom you gave me”?

We must pray all the more that our parishes awaken to the words of Luke 19:10, “The Son of Man came to seek and save the lost.”  May we especially apply this to the lost generation of neurodivergent adults.

* * * * * * * * * * * * * * * * * * * * * *

A sampling of articles for further insight:

 

 

An update on the Virtual Café

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

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

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