Autism Consecrated

Author: Autism Consecrated

  • Raise your hand if you’re not here

    Raise your hand if you’re not here

    by Aimée O’Connell

    Next time you go to church, look around and get an idea of how many neurodivergent (i.e., autistic and/or ADHD) people are in attendance.  It’s a number you’ll want to know if ever you are asked how your parish might offer sensory supports and accommodations for neurodivergent parishioners.

    Right away, the difficulty of such a task becomes evident.  Counting ourself, the number is… one? More, maybe, depending on how many of our family members are with us?  How can we truly tell, without falling back on stereotypes?  Somehow, tabulating any “problem behaviors” we see feels unfair… and yet, this is usually how people begin considering what neurodivergent needs exist in any community.  Catechists can usually pick out the students whose sensory and processing needs don’t work well with the way classes and instruction are expected to run, for instance.  Parishioners learn to recognize which little ones have the most difficulty sitting still and staying quiet during the liturgy.  But that only takes into account the younger members of the parish.  Where would we look for the neurodivergent teens and adults?  Youth ministry? CYO? Bible study? Social ministry and volunteer committees?

    Mmm… not exactly.

    In many parishes, neurodivergent teens and adults simply do not participate.  Sometimes this is voluntary avoidance on their part… and, sometimes, this is the result of participation being discouraged by the parish.

    Yes, you read that correctly.

    Sometimes subtly, sometimes directly… sometimes by deliberate omission… sometimes by an accumulation of unkind gestures which finally reach a breaking point.  Sometimes by fellow parishioners, and sometimes by parish staff.

    It is not an exaggeration to say that a large portion of people who reach out to Autism Consecrated do so in distress and sorrow after being told, in one form or another, that their sensory needs are a nuisance, a distraction, a burden… or a sign of bad character.  The prevailing belief seems to be that autism and ADHD are childhood conditions, and those parishes offering support and accommodations only do so for children.  Teens and adults are expected to either have no further needs or to meet their own needs for themselves.

    How can this be? Is it that parish resources are limited, and what few helps exist must go to the children first?

    More often, the reason given is that there aren’t any [or, aren’t enough] teens or adults with special needs to justify further supports. Making accommodations for a small number of adults is considered catering, and nobody wants to give preferential treatment to one or two fussy parishioners. Better they should learn how to cope, like the rest of us.

    But, you say, maybe the parish does not yet understand what the needs are, and would do better if they had a better explanation!

    You’d think.  But it has also been our experience in hearing story after story that these explanations are anything but helpful.  Many neurodivergent people have taken great pains to describe their needs and find ways to meet parishes halfway in finding accommodations for them to be able to attend liturgies and social events.  The response has been tepid at best and callous at worst.  Teens have been cut from youth group rosters rather than efforts made to adapt existing programs.  Adults have been asked to leave Bible study for asking too many questions or taking too long to respond in small-group sharing sessions.  Priests have given homilies sarcastically asking if people leaving Mass early enjoy their early bird dinners and sporting events, when in fact there are some who have left on the verge of sensory meltdown after enduring overload from the lights, music and pressures of having to suppress their neurodivergent needs.  Ear defenders have been yanked from people’s heads for being disrespectful.  When people have asked for basic accommodations ahead of planning meetings and volunteer events, their messages are not returned, and the meetings go ahead without them – finding them afterward branded as a no-show.

    Other times, it’s a Catch-22.  When neurodivergent adults have availed themselves of the supports offered, such as a cry room, they are summarily told these spaces are for children, not to be taken advantage of by bored or restless adults looking for more legroom.  Or, parishes have offered a designated sensory support space for neurodivergent parishioners, only to “borrow” the space during Masses for other purposes, acting surprised when someone wants to use the room that was supposed to be for their needs.  Some parishes offer adaptive First Communion prep and pictorial guides designated for children.  A good start, yes, but when those autistic children have grown into teens, they find that there are no similar supports for participation and sacramental prep as teens and young adults.  For that matter, many parishes have adaptive catechetical resources for young children, but nothing adaptive for RCIA.  (In fact, if you search online for “adaptive RCIA,” the results all point to how to make RCIA accessible to children, not adults).

    These are not hypothetical situations.  These have all actually happened… and are actually happening.  Many neurodivergent teens and adults have tried their best to participate but find themselves left out anyway.  Many now simply stay home because the combined demand of participation and fielding criticism is too much.

    Recent estimates suggest one in fifty adults may be neurodivergent.  That number is likely too low, as it is extremely difficult for adults to be formally assessed for autism and ADHD, even when they show a majority of the defining characteristics of either or both. Some have proposed that a better estimate  assumes one autistic/ADHD adult for every autistic/ADHD child we know.  (See more in the articles linked at the end).  If that’s the case, it’s safe to say that every parish has at least one person with sensory needs, with the actual number being much higher.

    It’s hard to count how many of us there are when parishes keep turning us away.  Where is the spirit of John 18:9, “I did not lose a single one of those whom you gave me”?

    We must pray all the more that our parishes awaken to the words of Luke 19:10, “The Son of Man came to seek and save the lost.”  May we especially apply this to the lost generation of neurodivergent adults.

    * * * * * * * * * * * * * * * * * * * * * *

    A sampling of articles for further insight:

     

     

  • An update on the Virtual Café

    An update on the Virtual Café

    It is nearly two months after Autism Consecrated introduced our Virtual Café, and the concept is doing exactly what we had hoped it would.

    In offering a Virtual Café, we sought to provide something simultaneously real and imaginary, simultaneously tangible and intangible.  Whereas an actual café might be a building offering an oasis of refreshment, our concept goes one step further by requiring participation of the imagination.  What distinguishes the experience is that it is a shared activity – the formation of a community in the unseen, where empathy and acceptance exist unbounded by tangible limitations.  When we offer a space to rest and recharge without pressure, that space comes from the constructs of our attitudes, our beliefs, our desires, our intentions, and our lived experience.  It is what ultimately drives any sense of refreshment our visitors will experience and take with them.  None of those things are “make believe.”  The hospitality we extend is very real. We know what it is like to live in a world that dismisses autistic needs as irrelevant to the community, as individual hardships to be endured without inconveniencing the many… and we also know that is not the way human beings are designed to live.  Our goal is to make St. Thorlak’s Virtual Café  a place where empathy and compassion are freely and happily given, as often as our cups need refilling.

    We are pleased to have a model at hand showing that neurodivergent hospitality can, in fact, be offered in a readily applicable and sustainable way.  St. Thorlak’s Virtual Café has no other operating cost than the fraction of the web domain devoted to its posting.  The resources needed can be readily found in the imagination… in the unseen… in the creativity that flows from the mere attitude of welcoming one another.  Would that brick and mortar institutions might notice that inclusion and belonging are not prohibited by either the limitations of disability or the lack of physical resources and accommodations.

  • The Cross of Autism

    The Cross of Autism

    This article was first posted with the Mission of Saint Thorlak in April, 2019.

    by Aimée O’Connell

    When Good Friday gives us pause to consider Jesus’ Passion and Crucifixion, our attention is most naturally focused on suffering, even to the extent where the words “cross” and “suffering” have become intertwined in the Christian lexicon.  For much of my life, I have equated “the cross of autism” with enduring the suffering particular to this condition and accepting it as my lot.  Perpetual anxiety, painful sensitivities to light and sound, headache and nausea in noise and crowds, inability to express emotions, difficulty speaking… all of these have been realities for me, along with debilitating exhaustion and a heavy measure of self-loathing when I fall short in acting up to social expectations.  All of this seemed in line with how I took Jesus’ Passion and Crucifixion to be.  In my spiritual immaturity, I saw Jesus’ suffering as a demonstration of “walk it off.” Take what life deals us, even when it’s unfair, and carry on without complaining.

    Perfection in suffering, to me, seemed that I should do it so that nobody knew I was suffering at all.  I reinforced this idea with Mother Teresa’s admonishment to “do everything with a smile,” and with Matthew 6:17, which exhorts us to fast and sacrifice without making a show of ourselves.  I also tried to rationalize this through St. Therese’s Little Way, proposing that “doing things with great love” meant doing them so as not to bother the people around me with my problems.

    Through the grace of God, and the fruits of my time spent in prayer this Lent, I am learning to see now that this is not at all correct.  It is an overly literal distortion of what is actually meant by each of those spiritual maxims.  My view has been rooted in manipulation – that is to say, manipulating my suffering to such a degree that I denied it, and I denied myself the chance to experience it fully.  In denying the truth of what I suffered, I paid the triple price of ordinary exhaustion plus the extra work of maintaining an untruth plus enslaving myself to standards I cannot possibly reach or maintain (and in the process, unfairly raising the expectations of others).

    I see now that Jesus never “walked it off.”  He knowingly faced his accusers with complete vulnerability.  He told the truth of who he was, knowing it would be rejected, mocked, ridiculed and punished.  He made no pretense that the scourging was mortally painful.  He did not suggest he had the strength to carry the cross.  He did not say he would not die if he was crucified.  He knew every one of his limitations, and he offered them to the extent he could.

    The actual cross of autism is embracing what I can and cannot do, in the same plain nakedness as Jesus.  To do this, as St. Therese implores, “with love,” it is not to pretend it is fun or easy.  Rather, it is to accept and believe that I am loved as I do.  Even in my weakness and shortfall, God loves me fully… right here, right now.

    And, guess what?  This new way is harder.  Walking it off is nothing compared to checking my pride and admitting that I can’t do something, especially when it’s someone I don’t want to disappoint, like a friend or a superior or a family member.  Admitting the truth would actually spare me the pain of sensory overload and trying to do what I don’t have the energy or adequate capability to do, but it requires stripping myself of the clothing of my pride.  In that moment of truth, it is so tempting to heed the voice of the thief tempting me to avoid the cross and save myself from revealing my vulnerability. But, as we saw with the two thieves beside Jesus, one embraced his need and brought God present; the other sneered, preventing God’s grace from saving him.  Even on Calvary, where two or more acknowledge their need before God, there He is with them (Matthew 18:20).

    The ordinary suffering of autism remains the same.  The anxiety, the exhaustion and the sensory overload are part and parcel of our condition. But in the absence of acknowledging this truth about ourselves, the suffering becomes dead weight… a thankless burden we adopt in exchange for the chance to look strong, to avoid being naked in our need, to not be mocked, criticized, or accused of being lazy. Yet, we know what’s true.  Are we willing to stand up for that truth, as Jesus did?  We begin by accepting God’s immediate, unconditional love in these weakest, most naked moments of truth… and discovering, to our surprise, that God’s love alone is real and plentiful enough to withstand the insults of those who refuse to believe, and to sustain us through all of our needs – good measure, and flowing over.

    May each of us experience the reality of this love, abundantly, as we meditate upon the mystery of the Cross.