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:

 

 

The Urgent Need: Autistic Mission

by Aimée O’Connell

Earlier this week, I referenced a recently published book intended as a field guide for bishops and seminary faculty in guiding and supporting autistic men discerning and responding the call to the priesthood.  As an autistic person, I feel the need to call attention to all that this book represents and its implications for the Church at large.  As a married woman, I am in no way qualified to speak about the priesthood or seminary formation – nor do I intend to.  However, as a member of the laity, I am charged with the same call to holiness and prayer as all my brothers and sisters in Christ.   I am the mother of a son who one day may himself feel a vocational call, if that is God’s plan for him.  I am a member of a Church begging for new vocations, more priests, pleading with Matthew 9:38 that the Lord will send more laborers to the harvest.  I may not be a seminarian, but I most certainly have a stake in the lifeblood of the Church – as is true for all members of the laity, men and women, all ages, all abilities, all neurotypes.

It does not matter who wrote this book or who endorsed it – by name, anyway.  This is not anything personal.  My observations are global, pointing to the big picture, and casting no blame on anyone in particular.  I pray that those reading this will follow likewise in seeing the system view rather than seeking out individuals.  We are all members of this same Body of Christ, with the same mission of actualizing the love of Christ in the world we live in.

In short: This book, Autism and Holy Orders, may fairly be characterized as a de facto policy statement of sorts, written in conjunction with and on behalf of Church leadership.  It makes public the working model which the Church holds on what autism is and how it is to be lived.  It bears the seals of approval by representatives of the Catholic hierarchy as well as those of Catholic religious orders, Catholic academia, Catholic seminaries, the Catholic diaconate and the secular field of clinical psychology.  This takes in a very wide swath of predominantly Catholic representation from on high, and one can assume that endorsements at this level trickle down through the ranks to each tier of leadership and staffing, eventually shaping the actions and opinions of staff and volunteers at even the parish level.

It is fair, then, to conclude that the prevailing approaches, attitudes, and beliefs of our Church toward autistic people are at least twenty years behind where the current and reputably acceptable understanding of autism is in the rest of academia, the healthcare and helping professions, and actual lived experience.  And this is a huge problem.

One need conduct very minimal research to see how autism has progressed from grossly misguided and stigmatizing treatment to much more humane, compassionate and accurate approaches informed by neuropsychology and the collective stories of actually autistic individuals.  The collective dialogue about autism has grown substantially and the global understanding is slowly coming around to see that autistic people thrive when allowed to be autistic, rather than following a pathology-driven model of symptom elimination.  Though the challenges of an autistic neurotype remain the same, contemporary approaches draw on personal assets rather than deficits and encourage autonomy through identifying those skills which would be most helpful to each individual.  Emotion regulation, distress tolerance, interpersonal effectiveness and coping ahead are skills that any person needs, but can also be tailored individually to fit the configuration of autistic people based on where they are finding the most difficulty. But, lest this paint too rosy a picture, I will add that it is still an uphill climb.  Meltdowns, burnout, shunning and stereotypes still exist all over the place.  The difference is that we as a collective society have more tools and better ways to frame things than we did twenty years ago, so there is better hope for better growth and thriving than in the darker days of autistic history.  People finally know that Rain Man is not the last word on, or the most accurate picture of, autistic life.

Enter, then, this book – published September 1, 2022, as a long-awaited guide for the Church in shaping and forming autistic men for holy orders.  In fact, once I started reading it, I realized the Church has waited TOO long to start looking at these questions.

Again, I emphasize that I read this book as a member of the laity who takes my call to pray for priests and vocations seriously, and as the mother of at least one person who may – who knows? – one day hear that call for himself.  And so it is that I speak up as one who is very concerned, who wants very much to support priests and vocations to religious life, and who recognizes that the pool of prospective members likely reflects the same demographics as we see in the mainstream population.  If we go with the one-in-44 estimate, debatable or not, we can safely assume we have several autistic people among us in every parish, in every diocese.   How many autistic people are called to religious vocations?  Only the Holy Spirit can answer that.  But it is our responsibility as fellow members of the Church to support all vocations, including those stirring in autistic individuals.

Thus, I raise the alarm.

Alarm? Isn’t that a bit melodramatic?  Not really.  Take a look at this review of the book by an autistic priest, and tell me afterwards if I am being dramatic.  Considering he was ordained 35 years ago, it is fair to deduce that he came of age during that time when autism was less understood and widely pathologized.  His words suggest that he has endured a lot of pain as a result.  While we can shrug and say that this was an unfortunate matter of people not knowing about autism like we do now, how can we reconcile that when this book – filled with the same pathologizing characterizations – was just published?

This needs to stop.

I have no answers.  I have no idea how to bring the Church up to speed so that she can work hand in hand with her autistic members in a way that is accurate, compassionate and truly nurturing of who we are.  I just know that if this book is commensurate with a policy statement, we’re in trouble.  I would feel the same way and make the same statements if a book like this came out in any other context – school boards, medical societies, secular academia – and I would issue the same call that I am now.

The Church is in the dark about autism. We, as autistic Catholics, need to be light.  We need to be visible.  We need to be who we are, as brightly as possible – because the Church is not seeing clearly.  The Church is stuck in the same rut that paints autism as a burden, a puzzle, something to be swept under the rug or passed over as quickly and deftly as possible so as not to draw attention to anything that looks or sounds different.  The Church is not comfortable with us as we are.  And this is not just limited to holy orders; ask any autistic person who has tried to participate in ministries, leadership roles, youth groups, sacramental preparation, faith sharing… and found them inaccessible, impenetrable and immutable.  Has nobody yet heard of universal design, or is it too scary to think of introducing something new at the institutional, diocesan, seminary or parish level?

We autistics have spent our lifetimes learning ways to grow and thrive and accept that non-autistic people do things differently.  We have been explicitly taught scads of social skills and social graces, scripts that help us come across in ways that supposedly pass muster so that we are taken seriously.

It’s time to model this for the Church.

It’s time to model compassion, active listening, comprehension, acceptance.  It’s time to model patience with a system that appears to us as lacking empathy, slow to understand and rigid in its ways.   But hey… we’ve been there.  We have both the experience to teach and the capacity to forgive.

If I may, allow me to paraphrase Ross Greene in closing: The Church’s stance on autism is challenging because it lacks the skills to not be challenging.  Skills do not just drop out of the sky; grace, however, makes all things possible.  As autistic Catholics, our mission seems clearer and clearer: We must be the light that is currently lacking. We must pray, be visible, and be the truth that makes up for twenty-plus years of systemic turning away and not seeing the pastoral necessity of understanding neurodiversity.

May God help us all in our mission.

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.

 

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.