Fixed: Email subscribers glitch

A note to email subscribers: We are attempting to fix the glitch which has prevented our recent notifications for new blog posts from sending.  If you have not received our latest notifications, we direct your attention now to our two most recent posts:

April: A Puzzling Month 

Autistic Egypt

Additionally, we invite readers to see Fr. Mark Nolette’s guest blog post on the National Catholic Partnership on Disability webpage: Autism Appreciation: Lessons from Horton Hears A Who

Thank you!
Aimee O’Connell – Autism Consecrated

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.

“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.

 

 

 

To Recognize and Value the Autistic Members of the Body of Christ

by Aimée O’Connell

The shift from Mission of Saint Thorlak to Autism Consecrated may seem to have come quickly from the front-end point of view.  However, the people behind the websites have felt the need for changes for some time now.  Adopting a new name and look reflects far more than simply rebranding or moving to a permanent webhost.

“We” – that is, myself, Father Mark Nolette and the people who regularly engage with us – are acutely and personally aware of the need for a better discussion of the theology of autism.  Where does autism fit into God’s plan?  Where do autistic people fit into God’s plan?  It’s not that the questions need asking… these questions have been asked about autism and every other disabling condition for decades, if not centuries, in some form.  It’s more the fact that the answers have remained the same, and are just as unsatisfactory, starting with the conceptualization of “disability” itself.  When a person approaches the community, the wider Body of Christ, with a condition that requires particular accommodations to facilitate their engagement and participation, we can just as easily say the community is “handicapped” [definition: “having a circumstance that makes progress or success difficult”] as many still call people with needful circumstances.

It is usually not helpful to debate if autism is a disability because autistic people find that our success often hinges on the amount of support and understanding we receive from those around us.  Difficult tasks are not as challenging when others recognize and adapt to our needs, and simple tasks seem impossible when we are held to the standards of images we do not fit.

Where, when, why, how does this discussion enter our parish lives?  Our communities?  Our dioceses?   As we prayed about how to fulfill our call as “missionaries” of the themes we promoted on the former website, it became clear that the need goes all the way down to the very foundation of our faith as Christians.  We cannot support one another without first asking How is autism experienced in the Body of Christ?   The answer tends to vary quite widely.  Some communities are living, thriving models of such natural inclusion that it is evident their identity rests in Christ Himself, as described by St. Paul.  Other communities are not there yet, for numerous reasons which deserve exploration without presuming the worst conclusions.

People of all ages and walks of life have a habit of forgetting that God creates life from love and fulfills in perfection.  Humans, by comparison, make objects.  It is appropriate to evaluate these objects, and even the materials from which they are made, in terms of purpose, utility and quality.  God has no need of such assessment.  From perfection comes perfection; therefore, all that God creates is useful and purposeful by the mere fact that God is God.  We do well to keep that in mind when considering the value of including, understanding, inviting and adapting to the needs of one another, as individuals and as communities.  Exclusion arises when we slip into seeing one another in terms of what we can do, how well we function, or where we fit in… instead of recalling that we all bear the same value as children of God by virtue of our personhood.  People are not objects.  We do not have utility.  Perhaps we have skills and ideas which can be judged as useful or superfluous, but in terms of our membership in any community, we have all been endowed with inherent value by God.

Autism does not exist independent of those who bear the traits qualifying them for that description. Autism only exists in the context of a common humanity: the autistic persons + how they are valued by the community. Click to Tweet
And so, we come together as Autism Consecrated, to recognize and value the autistic members of the Body of Christ.