It’s About Time

Subscribers may have noticed it has been quite some time since we last posted any content.  There is no deliberate reason for this: no extenuating circumstances, no vacations, no staged pause before unveiling our next initiatives.  As much as this approach flaunts the rules of content writing, web marketing and brand building, these stretches of time between new posts reflect the fact that Autism Consecrated is a contemplative apostolate.  This post is for those who may be less familiar with the contemplative way of doing things, and a reassurance that Autism Consecrated is still very much present, alive and breathing.

Our world operates on time and action.  It is absolutely necessary to have structure, agendas and expectations – just ask any family who, six months later, is still adjusting to remote school learning and working from home!  Simultaneously, however, God seems to call a portion of us, at any given point in history, to be ones who step back and notice Him in wonderment and reflection.  Some of us are naturally endowed with artistic sense, thinking in poetry rather than prose, seeing abstractly more than directly.  Others are easily caught up in marvel over things that most people accept as fact, and move on.  In terms of neurodiversity, large numbers of these dawdlers and daydreamers eventually wind up being pegged on the autism spectrum.  In  the spiritual life, such folks are the ones we call contemplatives.

Much writing and scholarship has been devoted over the years to defining contemplative spirituality.  There are formulas based on centuries-old texts and teachings, but some assert  that contemplation is nothing more complicated than noticing the presence of God in every situation.  For me, it’s about time.  When I focus on the things bound by time, I’m fulfilling the active elements of my vocation.  When I focus on the eternal, I’m fulfilling the contemplative.

Many times, an idea will come to me, perhaps via the contact form on the website, or in something that I read, or experience during the work week, about which I think to myself: this would be relevant for Autism Consecrated.  Most of these thoughts are rooted in some timeless and universal aspect of the human condition… in other words, in matters that are eternal.  And, when we are dealing with things that are eternal, they exist outside the framework of time.  What is eternal today remains eternal tomorrow, and next week, and next year.  Eternity has no deadline, needs no marketing, and transcends brand building.

Being part of the temporal world, however, I also appreciate the public’s desire for fresh content, especially when it comes to offering resources (such as our Youth Ministry section, still actively under development).  These will indeed get there.  As a contemplative, both in spirituality and in neurotype, I trust that the fruit will only appear when it is ripe, and I thirstily drink in the pondering of God during each moment of that ripening process.  For every day I set to work, I might be surprised by encountering a new aspect of God’s goodness, or a fresh understanding of the redemptive nature of suffering, or be graced with hearing the story of someone previously unknown to me… and taste a bit of eternity in each.  While I do not believe myself superior to, nor hold any grudge toward, those Rudyard Kipling calls The Sons of Martha, I can find fewer things as reassuring, satisfying or edifying as seeking after the gaze of God, and I offer no shame or excuse in spending long stretches of time pursuing this eternal delight.

Yes, I promise, there are outlines in progress of content we intend to post on the Autism Consecrated resource areas. As Fr. Nolette and I have been discussing our ideas, we keep coming back to the fact that there are not many resources out there for contemplatives.  But… what would those resources look like?  Is there such a thing, for example, as a contemplative model of youth ministry, when most YM programs are group- and activity-based?  In terms of pastoral support for autism, how can we emphasize the vital importance of just-being, when most parish staff and inquirers to our website want things TO DO with autistics, not ways to just be with us?

Perhaps time will tell.

Our Stories: Connections to God Through One Another

RESOURCE LIBRARY UPDATE:

In the three months since Autism Consecrated put out the call for presentations, we have noticed something interesting.  In the same way most of what we do tends toward the personal, the human and the deeply subjective, so too has our pursuit of assembling a symposium on autism and spirituality.  Our in-person event, “Autism Through the Eyes of God” never made it past the first planning meeting, thanks to the worldwide pandemic.  Our next thought was to shift our focus to the online platform, sending out an open call for presentations which we intended to curate and post in a freely accessible resource library on our website.  The result?

Barely anything.

But in the meantime, we have engaged behind the scenes of the website in multiple conversations about autism, spirituality and disability theology which keep coming back to the same theme: OUR STORIES.

In the broad scheme of looking at autism’s belonging in the Body of Christ, there is no formula to disseminate, no paradigm to discuss, other than that of merely being human.  There is nothing more fundamental to building an inclusive spirituality than to be with each other and enter into one another’s stories.  The act of being-with invites us to draw closer through empathy and mutual vulnerability, and to experience God’s presence – first in one another, then in our midst, and then in the depths of our own heart.

Anything beyond this runs the risk of being formulaic, impersonal and not able to fit the actual needs of the person in front of us… or the needs we ourselves have.

We have known this since the inception of the Mission of Saint Thorlak and its expansion into Autism Consecrated.  We have often repeated our catch-phrase when asked what is needed in our churches to accommodate autistic people: “less programming, more relationship.”  Likewise, when I was offered the task of writing St. Thorlak’s biography, I opted to tell his story as a person rather than give another academic treatment of his achievements or attempt to parse out those aspects of historical record which suggest he had autism.  Historical fact is relevant, but in presenting St. Thorlak as a man to whom we can relate even eight hundred-plus years after his lifetime, it seemed most relevant to simply tell his story.  What good are facts without a personal reason for wanting to know them?  That same question applies to any and every person, autistic or not, who approaches our faith communities.  What good is gathering facts, diagnostic labels, symptoms, needs, accommodations – without a personal reason for wanting to know them?  Chances are, if we get to know the whole person first, some of those other facts quickly become superfluous, even if that flies in the face of what we have been told are “best practices to follow in helping autistic people.”

In truth, we hoped to gather essays and video presentations discussing these points.  It hasn’t happened.  We did, however, receive a number of submissions of personal stories, which is, frankly, exactly perfect.

For the academics among us (including myself, I confess), there are discussions and academic papers in the field of disability theology which are accessible in book format, formal presentations and websites online.  We are striving to continuously maintain and add titles of interest in our Further Reading section, to keep those conversations going.  Furthermore, we actively welcome reaching out to other like-minded groups and individuals for dialogue, discussion and input to our resources.  One such organization, the Kairos Forum, is headed by Cristina Gangemi, whose research ties directly in with the point we are making.

And so, once again, we extend to everyone here a call to contribute.

Wanted: OUR STORIES – How have we encountered God?  What helps, or hinders, us from encountering God in our daily lives, or our faith communities?  How would we describe our spiritual lives?

Format: However we best share ourselves.  Words, visual art, music, or any other channel of expression.

What to do: Send them to Autism Consecrated along with a signed Release Form (required for any submission to be posted).

We will begin posting stories soon where our Resource Library would have been.  We look forward to hearing from you!

Thorlak of Iceland: Apostle of Autistic Theology

by Aimée O’Connell

We are nine days away from celebrating the summer feast day of St. Thorlak, and the Catholic Church in Iceland is taking this time to observe the Novena of St. Thorlak at the conclusion of each weekday Mass at the Cathedral of Christ the King in Reykjavik between now and July 20.  The text of that Novena is available for daily prayer on our website.

Autism Consecrated references St. Thorlak throughout all that we do, starting with our tagline, “Living the Way of Saint Thorlak.”  An entire section of our website is dedicated to the ways his life inspires and directs our work and the manner in which we strive to live, autistically, in the Body of Christ.

Many have asked why we turn to Saint Thorlak before some of the other saints who appear autistic, or whose devotional specialty centers around matters of behavior and mental health.  Thankfully, there is no competition between and among the saints.  The holy women and men of God are all on the same team, and it is impossible to have too many benefactors praying for us.  What sets St. Thorlak apart for us is the way he lived in the time he did.  Thorlak was a child prodigy groomed by medieval Iceland’s political elite to be someone of power, both through his academic superiority and the offices he attained within the Catholic Church.  While he never denied his achievements, he considered them a reflection of his love of God and a reminder of his duty to share that love with everyone, equally, regardless of social status.  He steadfastly held to doing what was morally right, to the detriment of his political security.  His deep love of theology also lent itself to a more contemplative lifestyle, and thus he was further misunderstood by his fellow clergy who, like all Icelanders of that time, placed top priority on that which was practical and concrete.  It is not difficult to see why a life structured around prayer might seem foolish in twelfth-century Scandinavia, where physical survival depended on daily labor and economic survival on favorable political connections. Yet, Thorlak’s love of theology, coupled with a child-like air of wonder, made him the kind of priest whose mere presence drew people closer to God and the practice of their faith.  How?  He was physically weak and a poor speaker, easily ridiculed by political rivals who more closely resembled their Viking ancestors – but Thorlak was not ashamed of his marginality.  Rather, he consecrated it to God, offering that very weakness to Divine Love.  His accomplishments, and his sainthood, are the rich fruits of that contemplative life mocked by his contemporaries.

Iceland is especially blessed to have Thorlak as its patron saint, and the autistic community worldwide is likewise blessed to know his story and example.  Holy Saint Thorlak: Pray for us!

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.

It’s No Better To Be Safe Than Sorry (…or, My A-Ha Moment)

Shamelessly, I out myself in that one statement as both a product of 1980s culture and an Aspie who, on seeing that iconic video of the song Take On Me, found it thrilling to think that somewhere, in some anonymous cafeteria, the portal does exist where one may cross from our lives as we know them to the stories of who we secretly long to be, kept safe under the disguise of ordinary comics.

My family never knew this… my classmates never knew this… and, I’d say my friends never knew this either, save for the fact that I didn’t really have any friends at this point in my high school career… but, I have tacitly been a secret agent for quite some time now.  At least, according to the comics I created in seventh grade and beyond.  It began nearly by accident – both the comics and the thrust of the main storyline – and yet, as I wrote more and more, the story of my odd identity took on life, and buoyed me, day after day, in my own anonymous cafeteria seat.

30+ years later, I see what those comics were to me: a coping mechanism and creative outlet, for starters.  But more so, they were my way to tell myself who I really am beneath the trappings of the environment in which I lived and functioned.  These comic stories freed me to be and say everything I felt.  I had a place in them.  I belonged.  And interestingly, the plot lines rarely revolved around acceptance or adulation.  Most of the time, I was a lone operative, and even within my own fictional setting, I was often not accepted.  My ways were different.  I was tolerated by my comic-peers because, somehow, I got the job done before they’d even started planning their routes.  It was not a matter of being accepted… it was a matter of agency.  I wrote the story, I took the chances, and I accepted the consequences.  Not all of my episodes ended well, but in each story, I was satisfied I had given my all… and, I eagerly awaited the next installment.  A far cry from my actual story at the time, which found me a high academic achiever with no social life and no sense of agency.  I did what was expected, and I did it well… but I was profoundly unhappy.  Hour by hour I pleased others to perfection, but never considered myself as an agent.  Funny, how I built my secret comic stories around agency.  Did I somehow know that this was the one thing missing from my true story?

As I think about that more, it’s true for many autistics.  We are seen from early on as needing help, needing therapy, needing intervention, needing the roadmap for how to live like others live… and, when we complete these exercises, we are praised for becoming more like we are told we ought to be.  We are just as often marginalized, even bullied, for being different, which only adds to our sense of non-agency.  We don’t always have bad childhoods, of course, but I dare say there is not one autistic who has not felt excluded in one way or another at least once.

What is “agency”?  It is the capacity to choose and act for one’s self.  Sure, there are social norms and societal expectations which are there for the common good of all and which ought to be known and followed.  But those finer points, such as what makes us happy, what makes us comfortable, and what makes us look different, are not critical to the functioning of the community.  “Agency” is just as much about the choice to wear comfortable clothing as it is applying for a job, even if our colors clash or our fabrics aren’t trendy.

I know I was very unhappy in high school because I had been taught, overtly and subtly, that ridicule and exclusion is for the weak, the lazy and the dorky.  If I sat alone in the cafeteria, it was that I did not try hard enough to socialize, or that my hair was combed flat and pulled back rather than teased high.  When my peers called me unflattering names, I yielded my agency to their version of the story, and I was ashamed I did.

But is it any better to be safe than sorry?  I tried and tried to rise to the standard of other stories that did not match mine, and I kept my “real” self hidden in my comic universe.  It was safe.  I was sorry.  And it was no better.

Today, I want to claim that agency, after all these years.  I want to be the one who decides what I do, because I trust that I do it for very good reasons.  I want to be who I always have been.  I may still be ridiculed or excluded, but I want to remember that those things – painful as they still are – do not affect the integrity of my story arc.  Perhaps wearing a fleece hoodie on the hottest day of the year makes others chuckle… but I am not writing it from their point of view.  I am writing it from mine, and that extra layer gives me superpowers they don’t see.  It regulates me.  It helps me feel safe.  And, when I feel safe, I function better.

That’s the story in which I thrive.   That’s the story in which we ALL thrive.

Maybe, for some, our agency remains secret.  For others, maybe not.  But, for everyone: It’s ours to claim, here and now.  Comics welcome, but not required.

– Aimee O’Connell

Life and Legacy

by Aimée O’Connell

When we hear “end-of-life planning,” we likely imagine meetings involving wills, property, funeral instructions and burial site selection.   It is not something we face with great enthusiasm.  For parents with children whose cognitive, emotional, behavioral and communicative skills are limited by autism and other conditions, end-of-life planning bears the additional question of how those children will be cared and provided for in their own adulthood.   It is a process which draws deeply on faith and hope that plans can be followed and provisions can be made to ensure that adult, disabled children can live the best and fullest lives possible.

And then… what will happen at the end of THEIR lives?

In many cases, planners take that question into account, and provisions are made to cover financial costs and instruct caregivers in general terms regarding the family’s faith background, place of worship and burial site.

One mom of an adult autistic daughter recently thought about this further, imagining what the end of her child’s lifetime might look like.  Who, in the family, will still be living?  Where will they be, geographically?  How many times will her caregivers have changed by then?  Will they be as familiar, as patient, as loving as those there now?

Who will be left, who truly knows her, at the end of her life?

The more this mom considered those questions, the more she realized that the core group of family, friends and caregivers who know her daughter now are the ones who appreciate her to the fullest extent.  These are the people who assist in carrying her daughter’s story – and, for the most part, they are a generation ahead, which means they will not likely be alive at the end of her daughter’s life.

With so great a focus on the pragmatic side of end-of-life planning, there is usually an assumption that, even if the deceased could not afford or arrange the particulars for themselves, they at least will have friends and family to memorialize them.

Here’s the point: What happens to people whose ability to be known is limited to being-with-them?  How do we memorialize lives lived beautifully by people unable to work, unable to speak, unable to plan and attend social gatherings for themselves, unable to make… unable to do those things which we typically rely on to describe a person’s legacy after they are gone?

Memorialization is a vital part of our human existence.  One need only look at monuments, national holidays and the persistence of obituary pages even as the rest of our newspapers scale back content in the digital age.  Death may silence our voices, but our stories live on.  Yet, when it comes to the severely impaired, our voices are not always heard even in our lifetimes.  How do we provide autistic and disabled people not just a funeral and burial, but an actual memorial, a lasting gift affirming that their lives were indeed of great and wonderful value?

This mom has started building a portfolio for her daughter, while friends and family are still healthy and within reach.  She is filling it with stories, memories, photographs, artwork and song, all by those who know her daughter and can describe her in beautiful detail.  When it is complete, this collection will leave no doubt in anyone’s mind who her daughter is and what she means to those who know her.  And, of course, this master scrapbook will be something she will have, and keep, throughout the remaining course of her lifetime.  Even if the end of her life finds her surrounded by people who only care for her or encounter her casually, her story will be a vivid window into who she is at her deepest core.

When we think about helping plan for an autistic person’s future, how very insightful to realize that their voice may not be remembered by the time their future fully unfolds.  Accommodations are not limited to those things we can do for a person now.  Assisting in telling a person’s legacy can be just as meaningful a gesture to their heart as helping them navigate their ordinary activities of daily living.

 

 

 

 

“Welcome” Seems To Be The Hardest Word

Autism Consecrated is kicking off our Pastoral Inclusion of Autism Series!

Whether you are reading this as an autistic person or someone who serves the community in some way, this next wave of posts on pastoral inclusion of autism will hopefully spark thoughts and ideas applicable to anyone.  While many of these points seem simple, their implications run quite deep.

 

Part One: “Welcome” Seems To Be The Hardest Word

by Aimée O’Connell

In my career, I have done a great deal of consulting: first as a school psychologist, then as a family support liaison for adults living with mental illness, and most recently with ministry volunteers looking to be more welcoming and inclusive toward those on the autism spectrum.  I find it exhilarating to demystify and humanize things like learning disabilities, mental illness and autism, which our culture tends to classify as conditions separating people from the ability to achieve what we collectively call “success” – that is to say, a sense of ease and accomplishment with our lives, our identities, and our relationships.   Our culture so greatly values individual achievement that there is an unspoken sense of “yes, but” when a person needs help to attain what the majority can do independently.  Thus, when someone identifies with one of these conditions upfront, we unconsciously equate that with needing help – whether we are the people disclosing their conditions or the ones standing by.

With autism awareness growing over the past decade, there is a proliferation of information available in print and online to describe autism to those not yet familiar with what this means.  There are descriptions coming from clinical sources which outline the situations most likely to be difficult for autistic people, and there are resources developed by autistics themselves describing which  accommodations are helpful.  Somewhere in the middle are articles and checklists which provide detailed ways to help autistic people feel comfortable and accepted.

I want to make a strange suggestion: I would like to propose skipping over all that information.

Do you want to help your community be more welcoming and accessible to autistics?  Start by asking yourself anthropologically what any community does to express “welcome.”  Some of it is overt, even including signage using that word, but much of it is completely unspoken, with the expectation that those who show up want to be here, are able to participate, and have something worthwhile to contribute.  Generally, “welcome” is a signal that says we are at ease with newcomers joining our group and that we feel confident that participants have the capacity to be here.  “Welcome” is a statement of approval and acceptance into the community.

At the risk of being absurd, I say that “welcome” does not take the time to study newcomers or approach them as puzzles to solve.  “Welcome” does not make clinical assessments at the door or convene task forces to study how to restructure activities, modify the environment or come to the aid of the less-able.

If we know all of this intuitively, then making our community welcoming and accessible to autistics is a matter of signaling that we are at ease with autistics joining our group, and that we feel confident they have the capacity to be here.

All that other stuff can happen further down the road, if it seems helpful or appropriate.  Want to better appreciate what it’s like to be autistic?  Ask us, or read about autism… but, do that after you invite us in and assure us that our being there is important.  Want to make autistic people more comfortable or better able to participate in the activities at hand?  Ask us, or read about ways to do so… but, do that after you invite us in and assure us that our being there is important.

“Solving the problem of autism” ahead of time may be efficient, but it necessarily tags us as a problem.  That does not feel very welcoming.

Of course, it is important to know what makes an autistic person comfortable and optimizes our ability to participate.  That comes after (and because of) the welcome.  A core list of considerations for autistic well-being includes sensory regulation, physical space, preferred communication style, social participation and personal interests.  As part of sensory regulation, it is important to consider lighting, acoustics, decibel level, textures, temperatures, ability to move around, ambient aromas and visual layout. Dietary preferences and supports are also an important consideration.

None of this is terribly cumbersome, and none of this is any one person’s responsibility.  In fact, it ought to be viewed in terms of partnership.  Autistic people want to participate optimally wherever we go, so as a matter of course, we are motivated toward configuring our considerations as best we can in any given situation.  While no community or situation can match every ideal, autistic people are excellent collaborators in anticipating which situations may be more difficult to navigate and which may be made easier.  Knowing that the community is equally interested in supporting our well-being reflects the welcome we received in the beginning.  It is a natural consequence of being genuinely accepted, as implied by “welcome” itself.

Unfortunately, “welcoming” people with differences can quickly morph into, or be supplanted by, anxiety to accommodate.  “Problem-solving” may sound empowering, but in truth, such focus poses a greater barrier to inclusion than any reluctance to understand or accommodate.  Problem-solving defers welcoming the person by looking instead at what the community might be asked to do differently if this person is allowed in.

“Welcome” is a subtle but powerful word.  In keeping with its purest meaning, the challenge then becomes redefining how we carry that out.

 

 

 

Encore: The Autistic Image of God

This post originally appeared on the Mission of Saint Thorlak website in 2019, but serves as a very good capstone on Autism Awareness Month, particularly as it so eloquently describes our vision for the Autism Consecrated community. – Aimee 

Towards a Spirituality of Autistic Life

by Father Mark P. Nolette

The stone which the builders rejected has become the cornerstone. By the Lord has this been done; it is wonderful in our eyes. – Psalm 118:22-23

A thorn in the flesh was given to me, an angel of Satan, to beat me, to keep me from being too elated. Three times I begged the Lord about this, that it might leave me, but he said to me, “My grace is sufficient for you, for power is made perfect in weakness.”  I will rather boast most gladly of my weaknesses, in order that the power of Christ may dwell with me. – 2 Corinthians 12:7-9

Consider your own calling, brothers and sisters. Not many of you were wise by human standards, not many were powerful, not many were of noble birth. Rather, God chose the foolish of the world to shame the wise, and God chose the weak of the world to shame the strong, and God chose the lowly and despised of the world, those who count for nothing, to reduce to nothing those who are something, so that no human being might boast before God. – 1 Corinthians 1: 26-29

What does it mean to be Catholic and autistic? How can autistic people encounter the Lord in their lives? What do autistic Catholics offer to the rest of the Church, to the entire Body of Christ? How does an autistic person exist in the image and likeness of God?  Can God have an autistic face?  If so, what might such a face look like?

First of all, let us recall that autistic people remain human beings. Autistic people are also sinners in need of redemption.  We need the grace, reconciliation and salvation that is found in Christ through His Church.  We need to be incorporated into the very life of the Triune God.  We need the Church. We need the Sacraments.  We need prayer.  We need the example and the inspiration of the saints, both past and present. We need to live lives of committed, faithful, just and persevering love.  In all these ways, we are the same as all other people.

Yet, we are not quite the same.  We are on the autism spectrum.  For some of us, it may be more obvious than for others. Nevertheless, for all of us on the spectrum, autism is a reality that permeates every aspect of our lives.  Autism is a way of being in the world, or perceiving the world, and of responding to the world that makes us “different”. Not better or worse; simply different. We would then expect that our life of faith – the way that we as autistic people encounter God and respond to God – will be at least somewhat different than that of others because of our autism.  Not different in the sense that we experience things that no one else experiences at all. Different in the sense that certain experiences that are present in the lives of most people – at least to a limited extent – are far more prominent in our lives because we are autistic.

Think of these examples. Everyone deals with other people, but only certain people are very social and choose a calling that requires such a social nature.  Everyone is alone – or needs to be alone – now and then, but only certain people choose to live alone as something essential to their calling.  It is the same with us as autistic people when we see ourselves in the midst of humanity as a whole.

What does it mean to be autistic? If we look to the DSM-5 under “Autism Spectrum Disorder “ (note the term ‘disorder’), we will find a description of various characteristics.  Intense special interests. A strong sense of being apart from others. A love of routine and of ritualized behavior, and a hatred of change. Difficulties with empathy.  And so on.

Note that all of these characteristics are considered abnormal and therefore pathological. They are seen as weaknesses, as expressions of a disturbance or disorder, as symptoms that something is not right with us.  To be different from the vast majority of other people makes us somehow disordered, pathological, psychologically unwell. That’s the unspoken implication of the way that all the behaviors that set us apart as autistic are described.

Now, it is possible that any or all of these behaviors could become pathological. This can happen if we do not know or accept that we are autistic, and do not understand why we do what we do or respond as we do.  This can happen if others have somehow abused us or taken advantage of us.  This can happen if we find ourselves in a life situation that is simply too much for us as autistic people. But – and this is a BIG but – autistic behaviors need not be pathological. As Tony Attwood noted in his book on Asperger’s Syndrome, if you leave an autistic person alone – or pair that person with someone who shares one of his/her intense interests – there is no sign of pathology at all. None of our autistic behaviors need be pathological or bad or destructive. In fact, it is my contention that every one of them can become a way for us to encounter the Lord, and for others to encounter the Lord in us.  Yes, that which has marked us off as unlike others, or inferior to others, can become the cornerstone on which the Lord builds His grace in our lives.

Accordingly, I will now explore several experiences or behaviors that are characteristic of us as autistic people, and show how each one has a definite parallel in the story of God’s relationship to His People throughout the Scriptures and the history of the Church.  This will help us, as autistic people, to reframe these experiences and behaviors as encounters with God, and it will help those who are not autistic to see how autistic people, by their very presence in the Church, are reminders to the whole People of God of some fundamental truths about God and about what it means to belong to God in His Church.

1) The Experience of Otherness

We autistic people – even before we know ourselves as autistic – experience ourselves as ‘other’, as different in some definite but almost inexpressible way from other people. There is often a profound sense of being disconnected from other people.  We may want to connect with others or fit in now and then, but may have no clue how to do so.  Looking at other people, we may feel like anthropologists studying some newly-discovered primitive tribe. (What are they doing? Why are they doing that?) Usually, we are content to be alone, even though we value our friends and want to be with them from time to time.  Even among friends, however, we feel ‘other’; we feel different.  Others tell us that we are different, and that is rarely said as a compliment. We feel misunderstood, isolated, alone.  If we do not understand what this sense of ‘otherness’ can point to in a positive sense, we will end up seeing it as a negative reflection on ourselves.  We then feel hopelessly flawed, or hopelessly unseen.

Can we find an experience of otherness in our Catholic tradition? Definitely! From the very beginning, God is called holy. We usually associate holiness with great goodness, but that was not the original meaning of ‘holy’. ‘Holy’ meant ‘other’.  “I am God and not man, the Holy One in your midst.” God was seen as the Radically Other.  God was not like anything else we could know in our world.   God is Other.  If God is holy in the sense of being Other, then His People must also be Holy. They must be Other.  They cannot be like the nations that are all around.  Here is where the sense of holiness as goodness enters the picture.  We are Other as God’s people.  Therefore, we cannot live like everyone else. No, we must live according to God’s ways.  This sense of God as Holy, as Other, and the sense of God’s People as also Holy and Other, is found in both Old and New Testaments.

In this light, we can say that one important reason why we as autistic people, because of our unusual sensitivities, feel like we are ‘other’ is because we have an unconscious sense of the presence of God who is Other. Moreover, our presence among the people of God is meant to remind them that they, too, must be ‘other’. They cannot live like everyone else does.  They belong to God, who is Other. Their lives need to be in harmony with the ways of God, which are not necessarily the ways of nations and cultures.  This is not a popular message in a society that claims to honor diversity but demands uniformity. Followers of Christ must be different. We must be Other.  We autistic people help remind our sisters and brothers of this.

2) Repetitive Behaviors/Love Of Routines/Hatred of Change

We autistic people tend to like doing things in a certain way.  We usually like to have things in certain places, and to follow certain routines.  The unexpected can be very hard on us. It takes time and effort to adapt to any change. We may soothe ourselves with repetitive motions.  In a society that values newness and change, such behaviors and attitudes appear as problems. Other people cannot understand why we act as we do, or why change is so painful for us.  They only see it negatively.

Can our Catholic tradition enlighten us? Yes. We have already spoken of the holiness of God in our tradition.  How do people respond in the presence of the Holy? In the Old Testament, they did special washings, they followed certain rules, and they maintained a certain distance between the Ark of the Covenant (which symbolized God’s presence) and everyone else.  In the New Testament and in the Church since then, we have liturgies, sacraments, and various styles of prayer.  In other words, we have established routines, repetitive behaviors that rarely change, when we are in the presence of the Holy. That’s what liturgy is.  That’s what ritual is.  That’s how people have instinctively responded to the presence of the Holy for thousands of years.  That’s how we as Catholic Christians respond to the Holy among us now.

In this light, we can say that our routines and repetitive behaviors – though they do soothe us – may also flow from an unconscious or subconscious sense of the presence of the Holy, of God, among us.  We can see them as reminders that we are in God’s presence always.  Other people, who are not autistic, can learn to see these behaviors as reminders that they, too, are always in the presence of the Holy – God – no matter where they are or what they do.

3) Special Interests

We autistic people, from our earliest memories, have had a sense of otherness, of separation from people in general and the world around us.  We perceive ourselves as unique in ways we cannot define or express. This sense of otherness would appear to lead us into the direction of total isolation.  But then, something draws our attention. Something that attracts and fascinates us.  This thing becomes the first breach in our isolation, a crack through which the beauty of the world first captures our notice and through which our wonder and awe first pour forth.  This is not obsessive.  This is falling in love with the beauty of reality.  The thing that enraptures us could be something generic, like dinosaurs, or something more specific, like a specific part of a vacuum cleaner. To others who do not share this love, our focus seems excessive and obsessive. To us, it is sheer delight.  Our greatest act of love is to share it with someone else.  Here is where we first learn to love.

Can our Catholic tradition say something about this? Yes, indeed. We have something called the doctrine of election (and I’m not referring to voting). It means that, out of all the peoples of the world, God chose a people – Israel – for Himself. Not because Israel was better in any way, nor because God hated other nations, but because God wanted one people to come to know Him, to witness to Him, and to be the means through which all the nations of the world would find the blessing of faith in Him.  This sense of election continues in the New Testament and beyond. Those who become members of Christ’s Body, the Church, are the new Israel, the new People of God.  We are chosen, not because we are better than others in any way, but for God’s own purposes: that we might witness to the world through our lives the Gospel given us by Our Lord Jesus Christ, especially in His Passion, Death and Resurrection.  We are the “breach”, so to speak, through which Christ can pour forth His love and grace into a wounded world.

In this light, we can say the following.  First of all, we autistic people can think of our special interests – whatever they are – and tell ourselves, “I am one of God’s special interests. God loves me even more than I love my favorite things!” Secondly, our special interests remind others that they, too, are chosen by God to be a part of His Church and that they are loved even more than we autistic people love our interests (and that’s saying something).  Thirdly, our special interests are really a training ground for love.  In first learning to love one thing, we begin to learn how to love other people and God as well.

4) Empathy

We autistic people run into a serious misunderstanding on the part of other people when it comes to empathy. Because we may have difficulty knowing what we feel, let alone expressing it, people may assume that we do not feel for others. The problem here is that people do not realize that there are two kinds of empathy, as Simon Baron Cohen points out in his work: cognitive empathy and affective empathy. Cognitive empathy is the ability to “read” another person and understand what that person is feeling. With autistic people, cognitive empathy is impaired or even absent.  We usually have a very difficult time in reading someone else’s feelings, until we learn to do so after many years of life.  Affective empathy is the ability to care about how the other person is feeling.  Some studies suggest that autistic people often have a high degree of affective empathy, even if they cannot always demonstrate it well to others.  If we are told that someone feels upset or hurt, we will feel upset or hurt.

Combine this with the autistic person’s usual sense of otherness or isolation, and something interesting begins to emerge. If an autistic person acts on his/her feelings of affective empathy, that person is not likely to feel much affirmation for that act of love. This is partly due to the autistic person’s sense of isolation, and partly due to how difficult it is for the autistic person to express feelings or other inner motivations. For example, here is a story about a young autistic man who began to serve at a homeless shelter and soup kitchen. Some of the homeless people accused him of being “a bad man” because he did not seem warm like the other volunteers. Stories like this one suggest that, whenever an autistic person chooses to love, that love (if it is to last) will become an unconditional love very quickly.  The young man had very little feedback or praise, and lots of questions in his own mind. But he believed that this ministry was what God was calling him to do, and that was enough.  If that isn’t unconditional love, I have never seen it.

Here we get to the very core of our Catholic tradition.  Our faith tells us that God is love.  But what kind of love? A total, selfless, unconditional love. A love that seeks a response, to be sure.  Nevertheless, an unconditional love.  We have St. Paul’s meditation on love in 1 Corinthians 13.  We have St. Paul writing to the Philippians about how Christ emptied Himself, took the form of a slave, and died on the Cross out of love for us.  We have numerous other witnesses to this love – not to mention countless saints who incarnated this Love in their lives, each in their own way.

In this light, we autistic people can see our affective empathy, and the misunderstandings we may encounter as we try to serve others, as an invitation from Our Lord to love as He loves, to have His love dwell in our hearts in all its fullness.  People who are not autistic, but who understand that we are, will see in us a model of disinterested love, a love that gets nothing out of it, but loves for love’s own sake.  Is this not the kind of love most needed in our world now?

Now that you’re warmed up, see if you can go on from here. Think of some characteristic of autistic people that I have not mentioned here.  Does it remind you of anything you have ever read in Scripture or learned about your faith? See if you can make a connection like I have here.

It is my hope that these few words will help people both on and off the spectrum to see autistic people in a different light.  God often chooses those whom the world dismisses and works His wonders in and through them. Autistic people are among God’s little ones.  Let no one tell you otherwise.