A Prayer for the Autistic Souls

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All Souls Day, 2020

 

Heavenly Father,

 

We commend to Your loving care

all the autistic souls who have gone before us:

 

Those whom we knew well;

Those we knew only from a distance;

 

Those with whom we worked, as helpers and as colleagues;

Those who were our neighbors;

Those who were our classmates;

Those who stand out in our memories

as quirky, different, eccentric and odd;

Those who were accepted and welcomed;

Those who were marginalized,

bullied,

mocked,

and turned away;

 

Those who communicated easily with others;

Those who communicated without words;

Those whom others found difficult to reach;

Those who were overwhelmed by the sensory demands of their environment;

 

Those within our own families

who succeeded;

who struggled;

who knew that they were autistic;

who wondered why they were different;

who were accepted with love and patience;

who were difficult to connect with;

 

Those who died alone

in group homes;

in mental institutions;

in hospitals;

in nursing homes;

in isolation from others;

in homelessness;

 

Those who died without the benefit of being understood for

who they were;

why they were different;

what their actual diagnosis was;

what their actual capacity for love was;

what their interests were;

what their intellectual capacity was;

what gave them joy;

what brought them sadness;

all that made them who they are;

 

For all autistic souls who have gone before us:

 

May they rest in Eternal love, acceptance and peace,

and may their memory inspire us

to love more, understand better,

and cultivate patience

with ourselves, and with one another.

 

In the Holy Name of Jesus, we pray,

Amen.

 

 

 

Saint Thorlak: A Sermon by a Lutheran Minister from Denmark

Gratefully posted with permission of the author, Pastor René Yde – Denmark.

 

Dearly Beloved,

When we gather in church, we offer the sacrifice of thanksgiving for the praise and worship of God alone, but tonight we also have a kind of themed service because we celebrate the mass in memory of and in honor of an Icelandic saint, namely Saint Thorlak.

Why should we celebrate an Icelandic saint tonight? Because I have the vision for our community that over time we will celebrate all the Nordic saints, not only those from Denmark, but also from Sweden and Norway and therefore also from Iceland. We must get to know them and reflect on them as examples of lived Christian lives.

Saint Thorlak was born in 1133 in Iceland. He was made a deacon when he was fifteen, and ordained a priest when he was only eighteen. When he was twenty years old, he was sent to France and later to Lincoln in England, where he studied for six years. Here he showed astonishing abilities for theological study. He immersed himself in the Bible and in the writings of the Church Fathers with astonishing perseverance. Here he also got to know monastic life and became an Augustinian monk and since then he adhered to the rule with a stubborn tenacity. He returned to Iceland and lived the next six years as a parish priest. In 1168 he entered the first Augustinian monastery in Iceland and later became its abbot. When he was forty years old, he became bishop of the southern of Iceland’s two dioceses and he died on December 23, 1193, aged 60 years.

(For us Danes, who are not under the supremacy of the Roman pontiff, it is a piquant little detail that Saint Thorlak was not canonized by the bishop of Rome, but by the Icelandic Althing. It shows that a canonization may well be a local matter.)

How was Thorlak like as a person? Thorlak was a bookworm who could already read and write as a small child. He was shy and reluctant towards people. He was silent and withdrawn and could seem strange and dismissive if one tried to talk to him. In addition, he was a very complex personality with opposite and seemingly contradictory character traits.

On the one hand, Thorlak was incredibly rigid and regular of personality. To him, things were either right or wrong. He saw things exclusively in black and white. He was an unwavering Christian idealist and judged the world and men based on the ideals of the Christian religion and the revealed law of God in the Bible and in the teachings of the Church. This led to him becoming very unpopular among the priests and the Icelandic nobles.

On the other hand, Thorlak was of a very mild and gentle disposition. He was humble and loving and had a great deal of compassion for his fellow Christians, to whom he showed a great deal of responsibility because of his holly office. He had a big heart for the poor and the weak and for those who had transgressed against the law of God. It even happened that Thorlak, as the confessor, imposed a really hard and severe penance on the sinner in the confession, after which he, as bishop, freed him from the penance and took it upon himself. This made the laity take him to its heart and greatly appreciated him as a pastor and bishop.

Thorlak was in fact a shining example of the excellent pastoral and Christian principle that says: “Strict in theory and mild in practice.” We Christians must be ruthless in our judgment of thoughts and ideas and judge them strictly on the basis of the revealed truth in the Bible and in the tradition of the Church, but we must be compassionate and gracious and gentle towards people, for that is how our Lord Jesus wants us to be.

How can an individual have such a great degree of opposite character traits as Saint Thorlak? That can actually be well explained, because it is overwhelmingly likely that Saint Thorlak was autistic.

Autism is a particularly congenital condition in which one has difficulty functioning in social contexts and is not very good at discerning social conventions and norms between people. One often has a rigid and strict approach to life and one may have difficulty functioning in the ordinary social interactions.

If Saint Thorlak had autism, which is most likely, then he is a good role model for people who are born with this special challenge and can for them be an example that even an autist can be saved and attain holiness and live in God’s love and grace.

Even if you do not have autism, you can use Saint Thorlak as a role model. He was born into the world with a special and difficult challenge. He was autistic and he had his special problems and challenges to contend with, but he overcame them by the grace of God. He sought the peace in the name of Jesus despite his social disability and turned his shortcomings into a love of the truth and of our Lord Jesus. Thorlak sought and found the forgiveness and grace that flows to us from the Holy Cross of Christ. He humbled himself, fought his sins and hardships, and found the saving and sanctifying love of Christ in the preaching and means of grace of the Church.

There is a word that says, “Every saint has a past and every sinner has a future.” Each of us has his special challenges and struggles. We are all born with special faults in nature that we are called to overcome by the grace of God. Each of us must fight against this or that sin or this or that particular challenge in our personality or this or that external circumstance. We are different also on the spiritual level, but the path is the same for everyone. We must all indulge in the grace from Calvary and be filled with the love of God through faith.

Saint Thorlak had autism, but he overcame this particular challenge of his and became a Christian shepherd for the Icelandic people, lovingly guiding them on their journey with God. You have your special challenges and I have mine. Let us together remember Saint Thorlak as a Christian man with a large and heavy cross to bear, but who bore it in love for the crucified and risen Savior. Let us take Saint Thorlak as a model for our Christian life and know that it is not our external or internal circumstances that determine whether we are saved, but only our will to belong to Christ and his church.

I will end my sermon by reading the antiphon that was sung in the medieval office on Saint Thorlak’s day:

“O shepherd of Iceland, you who are the father of truth, the pillar of permanence, the reflection of purity, you who soothe grief and is hope for the despairing, you led us to the meadows of our heavenly Fatherland.”

Glory be to the Father, and to the Son, and to the Holy Spirit, as it was in the beginning, is now, and ever shall be, world without end. Amen.

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.