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:

 

 

Prayer: Let Me Be Leaven

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

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

till it was all leavened.”

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

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

Here is the text of the prayer.

 

Lord, let me be leaven.

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

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

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

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

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

 

Amen.

 

 

 

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.

 

What is – and is not – on our Youth Ministry Resource Page

The following text comes directly from our Youth Ministry and Catechesis link, which may be found here.

A Message From Autism Consecrated’s Co-Founder, Aimée O’Connell:

I know that many people who click through to this page will be looking for concrete resources.  Having been a youth ministry volunteer myself, I’m guessing you are here because you have a tried-and-true youth ministry program which reaches a fantastic group of young people – and yet, there are still some who are not participating in group activities or connecting well with their peers, and you suspect autism might be a factor.  Perhaps you are looking to intentionally welcome and invite the autistic youngsters in your parish to participate.  Maybe, too, there are one or two who have brought their autism to your attention, and you would like to know what can reach and help these kids in particular.

I need to start off by letting you know that you are not going to find answers or solutions on our website.  It is my belief that the ideas you have and the programs you are using are exactly right, exactly as they are.  Furthermore, it is also my belief that any program or activity designed solely for autistic people will either fall short or miss the mark entirely, which is why we do not offer such resources here.

How is it that I have such strong convictions, especially considering that I have a master’s degree in school psychology and extensive background in working with, and developing accommodations for, autistic youngsters?

For starters, I am autistic myself, and so I’m what I would call “insightfully biased.”  I also know, from many years of experience, that autistic people benefit far more from people getting to know them than from pre-packaged curricula and activities.  While we can speak generally about autistic tendencies and what might or might not be helpful, we autistic people don’t always match the assumptions others make about us, even those made in the best of intentions.  We often feel unknown because our needs and preferences fall outside the norm and are hard to guess… and, because we have a difficult time letting people get to know us.  Pre-designed activities may be just fine if they are a good fit for our personality and processing style, so long as you remember there is no single autistic personality or processing style.

In the bigger picture, youth ministry is often a difficult fit for autistic people for practical reasons relating to our sensory needs and social anxiety.  Group activities are hard, period.  They can be (but are not always) confusing, unappealing, loud, too fast, and difficult to connect to the concept or object lesson you’re trying to teach.  Many of us like the idea of faith-sharing but not the games.  Others like the games but not the vulnerability of faith-sharing!  Some of us would like to dive more deeply into our faith than youth ministry is able to go.  And some feel an enormous amount of pressure trying to be “faith-filled” and “have fun” at the same time, when we have been drilled for years that we need to behave differently in each scenario.  (These are not just hypotheticals; I have heard these comments, and plenty more, from autistic teens who would love to participate but find it too confounding).

What else might keep autistic teens from attending?  Group activities require a lot of social energy, which is often in short supply among autistics.  If we have already had a long day where most of our “socializing and behaving properly” energy has been spent, we might not have a lot left for youth group.  Or, if we only have one day when we can recharge between all the other things we do, we might decide it’s too much to plug youth group into that day.

So, what can you do, if you want to reach out to autistic kids and engage them in youth ministry?  Above anything else, GET TO KNOW THEM INDIVIDUALLY.  Meet with them on their terms, and do so enough that you really have a sense of who they are, what they like, and what they don’t like.  Get to know their processing style, their relationship style, their prayer and spiritual style.  Are they introverts or extraverts?  Do they like to pray silently, or out loud?  Do they enjoy music?  Do they enjoy singing?  What ways do they learn best – by reading, listening, visuals or activities?  Do they have particular interests or questions about the faith?  What ideas do they have as to what they would like to see or do to share their faith?  Do they enjoy service projects?  Individually, or with others?  It is not just autistic people who can benefit from questions like these.  Most people will be able to engage better when there is a balanced blend of  visual, academic and experiential spirituality!

What about those who are introverts, who need alone time to process information, who feel especially anxious in group settings?  The richness of our faith allows for many ways to meet these needs and still foster community.  As a professed Third Order Carmelite, I can vouch that prayer is a powerful act of service and a meaningful way to engage with the community, even if this is done by one’s self.  Consider inviting those with higher social anxiety to pray for each week’s youth group theme, or to be someone who takes intentions from the members of the youth group and dedicates time to pray for these needs, on their own schedule and terms.  Consider pairing prayer partners between autistic and nonautistic youth – because this, too, is faith sharing in the community, and, where two or three gather in Jesus’ name, He is there among them (Matthew 18:20).

Can nonverbal autistics be included too?  Absolutely.  Taking the time to get to know someone who has difficulty interacting can feel intimidating and challenging, but be patient with yourself.  Most of us speak and interact so automatically that we do not stop to consider other ways of just-being with one another!  Once we do, it is surprising to realize how many ways exist to share the love of Christ.  Engaging less verbal and nonverbal youth will yield good fruit for the entire community, and once you get to know them well, it will be much easier to see how they would like to be included.

While I can’t promise answers or solutions, I would love to offer insights and ideas that are compatible with the programs that you already use.  I believe it is very possible to create space within the existing community to welcome and encourage people on the autism spectrum – be they youth, adults or volunteers – by both recognizing the wonderful individuality of each person and considering ways that typical fellowship and faith sharing formats may be made easier on the senses to allow the quieter, more reflective participants to thrive.

If you have specific questions or topics that are of particular interest to your ministry area as pertains to autism, please use our contact form.  I am also very happy to pray for you and your ministry!  I would love to hear from you.

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.

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.

Pastoral Ministry to Autistic Christians

by Allie Mason

 

Sometimes, to share that we are autistic with our church family can feel daunting, especially if we have experienced any negativity in the responses of others that we have told before. However, it is important to remember that God does not make mistakes, and the Church is a place that He intends to be welcoming. Just look to John 9:2-4. Jesus is asked if a man is blind because of his own sin, or the sin of his parents. “Neither”, is Jesus’ reply, “this happened so that the works of God might be displayed in him” (NIV). Do not take this simply to mean that the man was born blind so that, at the appropriate time, Jesus could heal him. Rather, consider how God works through our lives as disabled Christians, how our lives themselves display the works of God. If possible, try to consider disability as a vehicle of light, where God is communicating through us and with us to the world.

With this in mind, once we have shared that we are autistic with our church family, we can begin to build pastoral relationships based on a mutual understanding of the possible impacts that our disability might have. The indicative features of autism across the spectrum are impaired social skills, difficulties in communicating and repetitive behaviours. I will briefly touch upon these below, in relation to both ourselves as autistic Christians and the minister with whom we wish to speak. This could be in the context of biblical counselling, marriage preparation, faith formation or beyond.

 

Recommendations for the autistic Christian:

  • If stimming (self-stimulatory behaviour) is calming, or helps with focus, make sure to take along a favourite stim object. I personally have a collection of small stones and always feel soothed by having one held in the palm of my hand during a conversation.
  • If it would help, invite somebody else along who already understands the support needs associated with autism, especially to a first meeting. This could be a partner, a family member or a close friend. I would discuss this beforehand with the minister but have no fear in asking for this accommodation just because it isn’t the usual way things are done.
  • Finally, it is important for us to be our own advocate in such situations. We know what is right for us better than anyone else. For example, prayer for healing is often a delicate topic within the disabled Christian community. If, as I do, you feel that being autistic is not a deficit, but rather the way that we were made by God Himself, then don’t be afraid to say ‘no, thank you’ if someone offers prayer for healing, and explain why. By the same token, if such prayer would be welcome, feel comfortable in asking for that too.

 

Recommendations for the minister:

  • Be receptive when asked to make accommodations to support the needs of an autistic member of your congregation. As it says in James 1:19, “everyone should be quick to listen [and] slow to speak” (NIV). Should no accommodations initially be requested, check at the beginning of the meeting that they feel comfortable with the situation and environment, as it may be that they were not confident in being the first to address this.
  • Keep in mind that what feels normal or insignificant for you can often feel chaotic for somebody who is autistic. For example, if a lawnmower starts outside the window, appreciate that this will likely be distracting or possibly even overwhelming, as our brains struggle to differentiate between foreground and background noise.
  • As mentioned above, an offer to pray for healing may be made with the best of intentions, but it is not always welcome and can also be perceived hurtfully. I would recommend always waiting for your autistic congregant to invite such prayer themselves or offering to pray more generally for whatever might be on their heart at that time.
  • If you are unfamiliar with autism and how it manifests in different support needs for different people, please feel that you can be honest about this. It is always preferable that you would ask questions and learn from our experiences than remain silent.
  • Be aware that many autistic brains understand language literally, so supplement any reference to metaphor by taking care to explain both your own ideas and Scripture in a straightforward manner. Encourage your congregant to ask questions, allowing them to seek clarification if they are confused or to express further interest in something that they have found compelling.

 

 

 

Allie Mason is a postgraduate student and freelance research consultant from the UK, currently studying for an MSc in Education at the University of Oxford and working with a start-up neurodiversity consultancy. She first became a Christian in her teenage years and, since a recent diagnosis of autism, has begun to pursue a keen interest in the relationship between disability and faith.