Phantoms, Ghosts, Masks, Crickets

by Aimée O’Connell

For word puzzle lovers, a list like this might bring the daily New York Times Connections game to mind. We might drop them into the yellow “straightforward” group, assuming the category to be elements of a haunted house, or things associated with Halloween, especially at this time of year.

Actually, I do place these four together in one category, but they fall into the purple “tricky” group. The category heading is “What we get when we ask for accommodations.” I could easily amend that to say What we get when we ask FELLOW CATHOLICS for accommodations, but I know it’s a universal enough problem that it applies to far more situations than just those we encounter in the Church. Even more precisely, I could say What we get when we ask fellow Catholics for accommodations when they ask us what autistic people need in order to belong in the Church. That gets to be more cumbersome than most people are looking for in a word puzzle – and, indeed, than most people want to look squarely at in their own diocese.

Over the past year and a half, I have been invited to discuss matters of autism and the Church by a variety of people and organizations, ranging from local to international. Sometimes I am asked to give a blog interview or to contribute to an article. Other times, I have been asked to sit on committees whose goals are to find concrete ways to improve autistic life in the Church, from sensory supports in the pews to bigger issues like vocation support. I am most eager to say yes, and to contribute what I can from both my professional and personal experience.

And then, I get to the part where I describe the accommodations I need. I do not process auditory information well. I can’t do phone or video calls. I need extra time to reflect on questions and a format where I can respond in writing (such as chat, text, or email). If we meet in person, I need the lights lower, and I may need more frequent breaks. I need to opt out of icebreakers and activities which heavily rely on speaking. I don’t need anything more fancy or complicated than that.

Here is where I encounter phantoms, ghosts, masks, and crickets.

Phantoms: People often agree to provide transcripts and copies of meeting agendas ahead of time, but then, these fail to materialize. Or, responses and interviews I have submitted suddenly vanish, lost somewhere in someone’s inbox.

Ghosts: It would astonish most people to know how many group email threads have gone abruptly silent shortly after I state what I will need in order to participate. It is odd, because other group members ask for flexibility and get multiple, immediate responses. My requests, on the other hand, get ghosted.

Masks: Even after describing in detail what I need in order to participate, people still expect me to “suck it up” – especially if they have not been able to arrange the accommodation I need. Sometimes, the glitches are out of everyone’s control – but the prevailing belief is that I can switch off my autism for that day and just go with the flow until the person in charge of accommodations returns from vacation, or whatever the case may be. People do not comprehend that accommodations are not preferences, nor are they perks, or luxuries. Those same people seem miffed when I do not go along and participate like everyone else. I am promised accommodations but am expected to keep my mask on hand, just in case.

Crickets: Most of my experience in asking for accommodations has resulted in silence. I tell people ahead of time what I need, and I get no response. I offer to do this, that, or the other thing, and I get no response. I ask whether or not my emails are being received, and, yes, they are. Oh. I see. Crickets.

This is a light-hearted slant on looking at something which is not in the least bit funny. More to the point: This month has been especially bad for seeing how autistic people are brushed off. A webinar sponsored by Catholic organizations to discuss autistic vocations found panelists sharing personal (and frankly, embarrassing) information about autistic family members by name, ostensibly without their knowledge or consent. A podcast which asked to interview me via email – for which I spent several days researching and preparing my responses – told listeners that I asked not to be interviewed, and went on to discuss the material I’d sent as though I were not part of the conversation. Never mind that the hosts sent me a long list of questions ahead of time, and that I personally and carefully responded to each one.  No – apparently, this does not constitute an interview, and I may as well have been a ghost or phantom, for the way I was completely left out of the rest of the podcast. (We won’t get into the irony of it being a podcast purporting to offer insights in supporting autistic people. In fact, we’ve already suspended irony for all the other examples, since they originated with committees and blogs aiming to support autistic people in our parishes and dioceses).

Folks, I am not a complainer. I probably tend to wait too long before I start making noise. My point in writing this is to acknowledge this ongoing problem in the hope that, if enough of us bring it into the open, maybe it will finally stop. I know what I describe here is more the rule than the exception. I know that most of the people reading this have had (and are having) similar frustrations. I want you to know that you are not alone. We as Church can, and MUST, do better. The mission of autistic people in the Church needs to grow beyond convincing other members of the validity of our needs and experiences… and in some cases, of our very humanity. We have so much more to offer the Body of Christ, if only we would be allowed to unmask and get to work.

Saint Thorlak: Pray for us!

 

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:

 

 

Prayer: Let Me Be Leaven

A new addition has been made available on our Prayer page, entitled “Let Me Be Leaven,” based on the very brief parable in Matthew 13:33 –

“The kingdom of heaven is like leaven which a woman took and hid in three measures of flour,

till it was all leavened.”

There are many, many times when we find ourselves in situations where we ask whether or not we should stay, or whether we would be missed if we leave.  Oftentimes this has something to do with our neurodivergence – our being misunderstood, or not noticed, or not able to participate because our needs exceed the accommodations available.  It is an awful feeling, to say the least.  There are times when it is obvious that it is appropriate (maybe even necessary) to leave.  Other times are more ambiguous.  We may want to stay for many valid reasons, but question whether it’s worth the cost.  We may feel a sense of loyalty and belonging, even if that is not always reciprocated.  It may be important to follow through on principle.  Or, we may very simply want to be there because we are there – which is valid reason enough!

For those times, the parable of the leaven in the Kingdom of God seems an apt comparison.  Aside from any physical parallels between how we feel and what dough endures (need we mention kneading, punching or pulling?), the idea of leaven makes an interesting meditation.  Our Lord spoke of leaven to describe how something small and humble grows into something grand and nourishing to great numbers, referring to how the Kingdom of God grows with each simple “yes.”  And yet, the process of leavening is also worth pondering, if we consider how yeast works alongside and within the popular and easily recognizable pantry staples.  Indeed, the sometimes silent, sometimes turbulent action of yeast is absolutely essential to the growth, expansion and full expression of the finished product.

Here is the text of the prayer.

 

Lord, let me be leaven.

When I am unseen, unheard, unknown in my community: Let me be leaven.

Let the full spectrum of me be present, if undetected, exactly as I am: stimming or still, restless or recollected, vocal or silent, vibrant or subdued, needy or fulfilled.

Hide me deep within surrounding measures of activities and committees and busyness and social gatherings.  May my presence permeate and thrive within the community, even when it is not perceptible.

Take into Your Loving Hands my yearning to belong, my desire to serve, the gifts I would share if given the opportunity – and rest them safely beneath the warmth of Your gaze, to rise and expand and thrive in the time You appoint.

Lord, hide me in the places You need me to be, and let me be leaven, wherever You lead me.

 

Amen.

 

 

 

“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.