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

The Anchorite: Such a Deal!!! (Seventeenth Sunday in Ordinary Time – C)

by Father Mark Nolette

In last Sunday’s episode from The Adventures of Abraham, we found him sitting in the shade of a tree near his encampment as the day is growing hot.  He sees three men nearby, not coming to him but on a journey elsewhere. Abraham runs to the three men, practically begging them to give him the honor of allowing him to give them food and drink. Abraham knows well that a journey in the hot sun could be perilous.  They would need food and water to survive.  Abraham provides the nourishment.  His guests in turn, promise him that he and his wife Sarah, in spite of their advanced years, would have a son by this time next year.

In this Sunday’s episode, two of the men move on.  The third, now revealed as the Lord, decides to tell Abraham the purpose of this journey.  The people of Sodom have been accused of serious sins.  The Lord means to find out if the accusations are true and then to pass judgment on Sodom.

By this point in the story, we may be asking questions based on our Catholic doctrine about God.  If this is God, wouldn’t He already know about the evils committed in Sodom? Wouldn’t He know what He was going to do? What’s the purpose of His conversation with Abraham in the first place?  If we recall that God is beyond the boundaries of space and time, that raises still more questions for us.  How do we resolve this? Where do we find light to help us?

This story of the Lord and Abraham is similar to many of Jesus’ parables in that  it’s the story as a whole that tells us something important about God and humanity.  The picture that emerges from the entire story is the focus.  All the details are brushstrokes that paint a multilayered portrait that repays our contemplative gaze.

What can we see in this story?

First, we have Abraham, the man of faith. He proved ready, at God’s invitation, to leave everything he knew to walk toward a future that was impossible by any human standard. Abraham, having emptied himself of nearly everything, was open to God in a profound way. God then takes Abraham into His own heart, His own confidence.  Abraham is invited to be a part of God’s own inner conversation, so to speak.  God is not offended when Abraham raises questions.  In fact God seems to want these questions.  In how Abraham responds, he shows himself to be a man after God’s own heart, a Beloved of God.  Abraham speaks what is already in the Heart of God.

Then there is the conversation itself.  Abraham believes that God intends to destroy Sodom for its evils. Abraham objects that God should not treat the innocent and the guilty in the same way. “Lord”, he asks, “if there are fifty innocent people in Sodom, will you still destroy it?” The conversation goes on, until God affirms that if He finds even ten innocent people in Sodom, He will not destroy the city.

This reminds us of Jesus’ parable of the weeds and the wheat.  In that parable, the landowner does not want the workers to uproot the weeds for fear that the wheat will also perish.  Both must grow together until the harvest. We can also recall Jesus’ journey to Jerusalem, and how a Samaritan village would not welcome Him because He was on His way to Jerusalem. Jesus’ disciples wanted to destroy the village for this, but Jesus rebuked them and moved on.

The story in our Abraham saga, then, affirms that God will not destroy willy-nilly because of the sins of the people.  He will offer grace and mercy.  If only ten good people can be found in the city, God will spare it.  In the same way, God does not desire any one of us to perish, no matter what our sins may have been.  If He finds even a small amount of goodness, faith the size of a mustard seed, He will forgive and offer new life.

God’s mercy is not the only part of the story.  There is also God’s justice.  As it happens, God does not find even ten innocent people in Sodom. For the sake of Abraham, God does rescue Lot and Lot’s family before destroying the city.  It is as though Sodom as a whole had rejected God completely.. Yet, it is unclear whether or not Lot is among the innocent or the guilty.  He resists the call to leave Sodom and has to be practically forced out.  His wife is too attached to Sodom and she perishes. Their daughters do not act in an exemplary way, either.  Yet God offered them one more chance.

Let’s return to our story of God and Abraham one last time. God will spare the whole city for the sake of fifty, forty, or even only ten good people. Suppose that there were fifty, forty or even only ten good people in Sodom. They would not be following the example of the others. Their beliefs score poorly on all the Sodomese opinion polls. These few people would be looked down upon, despised, by their neighbors.  Nevertheless, the city’s survival depends on these few holy ones.

Those of you who are autistic or who have some other disability may see yourselves here. You are too often ignored, even despised. Even churches organize their liturgies and their ministries with scarcely a thought to your needs, unless they are forced to do so.  You may have been told, in many ways, that you have little of value to offer.

What if this city… this parish… this country… this world exists only because the Lord loves you so much that he will show mercy on all because of you?

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.

 

How can we re-form “awareness”?

Here we are at another April and countless hashtags promoting autism awareness, acceptance and affirmation.  The non-autistic world is most familiar with “awareness” as a positive way to remind the community of things often forgotten in the day-to-day, perhaps taken for granted or not particularly visible.  There is nothing inherently wrong with that, and, if we think about it, that concept does very much apply to autism.

Why, then, do most autistics prefer not to promote “autism awareness”?

Historically, public discussion of autism took place without autistic input.  For decades, autism has been looked at as a condition needing to be treated, rehabilitated, overcome and eliminated.  That mindset arose from lack of understanding of the neuropsychological reality of autism, when people considered this a mental illness that could one day be cracked and solved.  We know better now.  We know that autism is a complex interplay of hyperattuned sensory input, increased processing demands and reflexive high-alert states resulting in our brains and bodies doing exactly what humans are programmed to do under such circumstances.  Anyone who finds themselves in a state of vigilance knows what it means to pause, freeze and not speak, and to laser-lock our focus on details we feel are essential to our safety.  We know better than to take autism personally, and not to assume autistic people are being difficult because we feel entitled to preferential treatment or because we are snobby, shy or seeking attention.

Or… do we?

See, this is why we shouldn’t throw “awareness” out the window just yet.  Yes, absolutely, let us accept and affirm autism as well, but we really do need to reboot our cultural sense of awareness of what autism is, now that we know what it is not.

To be blunt: Autistics know when “autism awareness” is nothing but a token nod from non-autistics who have no intention of learning what autism really is.  In those cases, yes, we do need to move into acceptance and affirmation.  But, how will non-autistics know us and understand us without first becoming truly aware of us and all that neurodiversity is?

Perhaps one day this will evolve into “neurodiversity month.”  Or, even better, we can hope for communities who embrace us as we are so that we can happily be autistic – and they can be aware of how to support us – all twelve months of the year.

Novena in Honor of St. Thorlac

by Aimée O’Connell

 

The summer Feast Day of Saint Thorlak is observed each year on July 20, which commemorates the translation of Bishop Thorlak’s relics which took place in the summer of 1198.  Such a date would be necessary for any exhumation in the twelfth century, but also reflects a season when pilgrims from all parts of Iceland would be able to make the journey to Skálholt to attend the ceremony and have the opportunity to personally venerate the relics of Iceland’s newly-declared patron saint.  More details about the summer feast day can be found in this blog post of the Icelandic National League of the United States (INLUS).

The Novena in Honor of Saint Thorlac (which uses the Latinized spelling of Thorlak’s name) was approved by the Bishop of Iceland, Most Rev. David B. Tencer, in 2018, and is a nine-day prayer and reflection on St. Thorlak’s life and example.  The English text of this prayer is available for free viewing and download on the Autism Consecrated website, and is now also available in spoken English audio on each day’s page for those who prefer to listen to the words or move about as you pray.  Furthermore, the spoken prayers of the novena have been uploaded to our YouTube Channel with ambient background music and photo slideshows of Iceland for each day’s devotion.

May we join our prayers to St. Thorlak’s, for the physical and spiritual wellbeing of Iceland, and may St. Thorlak pray for each of us in our own particular needs!

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

April: A Puzzling Month

Get out your symbols: April is here, and that means it’s Autism SOMETHING Month.  One pass over social media affirms that April is [choose one] Autism: Awareness-Acceptance-Celebration-Heavy Marketing-Conference Planning -Token Mentioning-Gross Misunderstanding-Online Arguing-No Two People Say or Feel The Same Way About It …. Month.

We see light bulbs, puzzle pieces, infinity symbols, rainbows, profiles shaded blue, profiles shaded red, profiles sparkling gold, the periodic table symbol Âû augmented with ctrl+shift+^… and a few more I’ve probably forgotten.

We hear autism called: a condition, a disorder, a disease, a way of being, a superpower, a neurotype, a diversity.

We see meme after meme telling us what autism is and what autistic people need… followed by explainers about what NOT to say, what NOT to do, and how NOT to help autistic people.  How many are written by autistics, and how many are written about autistics?

As an autistic person / person with autism / Aspie, and a parent of autistic kids (with whom I have checked and are okay with me saying that in a blog post), and a person with a degree in school psychology, I admit – maybe peculiarly – that I am overwhelmed by the fluctuations in rules and algorithms of reference, to the point where I’d rather be silent than risk saying the wrong thing.  Yet, I get why it’s like this.  I know how this storm originated, and I wait for the year the world declares recess on the shouting matches April brings.  Rightly, autistic people (like me) are tired of being told we need to adapt to the clinical consensus of what “typical” people ought to look like.  This model has dominated psychology for some time, but anyone recalling the history of the study of psychology will see that the discipline itself marches forward in phases which last as long as they fit the prevailing thought of the time.  Psychology as a discipline has some downright embarrassing moments in what we have promoted during different stages in the field.  Eventually, better-informed ideas appear in the literature, and what we held as dogma for many years gets jettisoned for what is, hopefully, better dogma in years to come.

The over-arching problem is that autism has never been well understood.  Even autistics have difficulty making sense of why we do what we do, but the one thing we know is that we are not defective.  But in terms of the clinical disciplines, autism remains a puzzle to non-autistics, warranting fretful study and treatment, and giving rise to terms suggesting we are disordered, diseased, trapped, suffering and in need of intervention.  Parents who hear doctors describe autism as something urgent and critical to treat assimilate this as a “disorder” without taking much time to question that angle.  Pair that with the daily task of trying to help a sensory-overloaded child not yet able to explain what’s happening, and parents are all the more susceptible to adopting battle-mindset to combat their imagined worst-case scenarios.  Good? Bad? Right? Wrong?  We can look back and see where that mindset has been detrimental to both children and parents, but we can’t fully accuse parents of ableism when this is how we have been taught to see autism.  Entire generations of people have been immersed in this way of thinking.  That is not going to disappear overnight, nor can all the rallying images of puzzle pieces be instantly obliterated, even as we realize that, for some, these symbols remind us how we have been treated like “puzzles” who don’t quite fit into the rest of humanity.

I risk being very unpopular for holding the belief that we do better to be clear, gentle and compassionate in our assumptions than to battle back with fury.  I know that runs the risk of enabling those who truly refuse to see autism as anything but an aberration, but I genuinely think more people than not are open to considering the advances we have made in knowing what autism is, and what it is not, over the past few decades.  What if most puzzle-piece wearing people never realized we might feel hurt by seeing that?  Those who double down and insist on keeping it prove themselves loyal to their slogans more than the people in front of them, which ends our hope right there; but some, I’m guessing, will express surprise and regret.  For some, the puzzle piece represents a commitment to understanding our point of view, which we well know can be a genuine “puzzle” to non-autistics.  To those, the puzzle piece was directed inward, not outward.  But, how are we to know which is which?  Maybe what we need is Autism Amnesty Month, to talk about and sort out all of this before the next batch of offending t-shirts starts printing again.

Lest I be said to be inauthentic, I truly do speak from both sides.  I completed graduate school in the late 1990s, when protocols and treatment plans still centered around Lovaas’ ABA technique and goals were still written such that autistic children would one day be indistinguishable from their typical, same-age peers.  I myself was raised to believe my number one job was to suppress, mask and conform, and when I did that well, I received multiple awards and copious praise.  I have now come to see that masking erodes my physical and emotional health, and have had to employ therapy techniques myself for recognizing and refraining from these habits while learning how to be autistic, unplugged and needy, in every aspect of my life.  It is as much work as it was learning to mask in the first place.  Many times, I slip and use the old terms I committed to memory back in my early career.  I notice myself using the wrong terminology especially when I feel too tired or anxious to pause and speak more accurately.  I am not an ableist.  I am an imperfect human being, in need of patience and forgiveness.  As such, I try extend that same amnesty to others in my path: Not everyone is an ableist.  Many are imperfectly trying to understand better, after years of being fed only incorrect information about autism.

We are in the concluding days of Lent, where the public ministry of Jesus is coming to a dramatic end.  His message has been missed by the elders and authorities, who rigidly adhere to what they know and have been taught, refusing to consider that there might be a way of seeing salvation that is completely different from their expectations and conditioning.  Rather than shouting them down, Jesus remains gentle, and silent, and asks God to forgive their rigidity and misconceptions… trusting that God’s justice flows not from violence, but from mercy.

I’m not suggesting autistics remain silent about what we know is true, and I’m not against correcting misconceptions and manners of reference which, knowingly or unknowingly, diminish our dignity and value as human beings.  I am, however, wishing this could be done in less confrontational and hostile ways.  I don’t mean harm against myself or my fellow autistics if I slip and say “disorder,” as it’s still called that in the diagnostic literature.  On a weary day, I might talk about the challenges of being anxious and sensory-overloaded more than the gifts of being perceptive, thinking outside the box and committed to my causes, which could give others the impression that autism is a condition to pity or cure.  Sadly, in acting to correct the seemingly ableist majority, autistics often employ the same techniques we are asking non-autistics to stop using with us… perhaps, ironically, because that was how we were conditioned by those driven to make us seem more normal.  Mea culpa.  But let’s not stop there.

Perhaps April will eventually become Neurodiversity Month, fostering the idea that we’re all part of the same humanity, and we all have a great deal to learn together, neurotypical and autistic alike.  Idealistic?  Yes.  But that’s how my autism speaks.

Autistic Egypt

The Lenten season of 2021 is just ahead, with all the usual encouragements of prayer, fasting and almsgiving – all of which are very good exercises, and necessary for our spiritual growth.  But for many of us (and not just autistics), too formulaic of an approach can separate Lent from its true roots, which stretch all the way back to the Exodus from Egypt.   Furthermore, many autistics find ourselves feeling lost and frustrated as we diligently apply these formulas and still find nothing but spiritual desert.  Perhaps a survey of the desert itself can provide perspective to help map out the right journey in the first place.

The Exodus took place when Moses led his enslaved Israelite brethren from Egypt to a place they could worship God.  The key here is that God desired communion with His people, free from coercion and distraction, to the point where He would escort them out of the land of their oppressors into an area of wilderness.  The gross oversimplification of this story finds many and varied reactions among those making the journey.  Some found it hardest to leave conveniences behind.  Others were challenged to believe this was really and truly the will of God.  Others questioned the trustworthiness of Moses.  And some were steadfast in their belief that such an unfathomable series of events could only be possible if God were leading them.  But the purpose of this journey was the same for everyone: Leave the spiritually empty rituals of slavery behind, no matter how familiar they are, and simply be with God, and let God speak to their hearts.

With that as our focus as seekers today, Lent is about leaving behind what is spiritually empty to simply be with God and let God speak to our hearts.

Easier said than done – especially for those of us who rely heavily on concrete, visual, and activity-based processing!

Let us then look, then, at the experiences of the Israelites in the Exodus story which we may recognize in our own lives today.

  • Repeating spiritually empty routines
  • Working primarily to satisfy others
  • Dismissing, or delaying, our own needs of body, mind and spirit
  • Accepting our status as “less-than”

Again, at the risk of oversimplifying, the Israelites lived in 13th century (BCE) Egypt as slaves, compelled by harsh drivers who judged their worth as laborers without regard to human dignity.  The Israelites had no choice but to wake up, day after day, and please those who had no concern for anything but the quality of their performance.  Their work had no dignity but to serve the Egyptians, whose spirituality was based more in appeasement and demand than anything resembling love.  The rituals to the false gods were devoid of meaning to the Israelites who were pressed into compliance with their overlords.  In order to survive, the Israelites adapted to their status as slaves and labored away in great emptiness.

The conditions of our lives are far from actual slavery, but it’s likely that most of us can name at least one or two ways we relate to the four points above.  So, then, if Lent is meant to echo the Exodus from Egypt, the path to being-with God is likewise an exit from the patterns that drain us of our spiritual connection to the God of Abraham, Isaac and Jacob (who knows and loves each of us individually, to the point of sending Jesus Christ to redeem each of us, individually).

Now, here’s the rub: Our very being autistic can, at times, set us up to operate under these conditions on a regular basis…

  • Repeating spiritually empty routines
  • Working primarily to satisfy others
  • Dismissing, or delaying, our own needs of body, mind and spirit
  • Accepting our status as “less-than”

This is not necessarily true all the time, but I venture there are moments each of us have experienced one or all of those in our schooling, our families, our professional lives and our spiritual formation as a consequence of being autistic.  For instance: Some of us truly strive to understand the meaning behind the teachings and precepts of the Church, but are not yet at a place where we grasp the truths of some of these practices and devotions as pathways to connecting with God.  It may take years for some of us to experience that meaning personally, and yet we continue to follow the rules because, we are told, “that’s what we do.”  Yes… that repetition may be the path to finally, one day, understanding.  But if it feels empty, it can just as easily lead to resentment and apathy.  If that is the case for anyone reading this, then Lent might be a time to ask questions, and persist in the quest to discover spiritual meaning, as in Matthew 7:7.

Autistics are familiar with support services to help us navigate the neurotypical world and the expectations of those around us.  The benefit is learning what others want us to do.  The downside to that is a pervasive sense of not being enough as we are on our own.  It’s hard being autistic and not carrying even a little bit of this sense wherever we go.  Yet, God does not create people to be “less.”  Do we truly believe this?  Perhaps our goal this Lent is to notice how we see ourselves, and where we might have adopted habits of working only to please others, or believing ourselves to be less-than those around us simply because we process differently.  It may not sound like a spiritual exercise, but the foundation of this is to better understand what is pleasing to God – and how that differs from what is pleasing by worldly standards.  Yes, we ought to strive to please God – but only if we understand what that means!  We might start with the first psalm, and realize “the law of the Lord” can be summarized by Matthew 22:35-40.  And that leads to the last point –

How often do we dismiss or delay our own needs of body, mind or spirit?  Isn’t this the whole idea of giving things up for Lent?  Isn’t that the very definition of “sacrifice”?  Well, yes.  But.  In Matthew 9:13, Jesus exhorts the Pharisees to learn what it means when God says, “I desire mercy, not sacrifice.”  There is a time and a place for sacrifice, absolutely.  But it can be very difficult to give from a deficit, and when we have denied our own needs as a matter of course, our deficit is quite large.  It seems counter-intuitive to suggest a Lenten program of finding comfort, but the simple fact is this: “Love our neighbor as ourselves” means that we cannot truly show mercy to others unless we hold ourselves to that same standard.  If our thoughts toward ourselves were audible to those around us, would they be appalled by the way we demand, criticize, ridicule or dehumanize?  We may not even be aware of how often we do this, as these habits develop over time and are shaped by the implicit messages we receive our whole lives.  Autistics, on the whole, generally receive more critical messages than supportive ones, including those from people trying to help us.  Our sensitivity and anxiety can magnify those messages into harsh internal criticism which then filters through how we look at ourselves, how we treat ourselves and how we dismiss our basic needs.  Perhaps what we need most is to study mercy and learn how to apply it to ourselves before anything else.  (Autism Consecrated offers the Autistic Works of Mercy on our Prayer page if this would be a helpful place to start).

So, now, we’ve seen what this desert wilderness is, and we realize why it feels so foreign: It is a place where critical voices are neither heard nor heeded.  It is a place where we are valued just for showing up.  It may seem too simple.  It may be called “desert,” but for those of us living 365 days of going without and pushing ourselves out of our comfort zones, it is a leap of faith to believe we belong in a place this drenching to our souls.  Can this really be the Lenten journey we are asked to make – and are we willing to trust that God really and truly wishes this for us, even if it differs from how we have understood “sacrifice” in years past?

May each of us grow closer to God this Lenten season, in ways that surprise and delight us – and God.