When diagnosis and treatment are not enough

by Aimée O’Connell, T.O.Carm., and Fr. Mark Nolette

 

Maybe you’ve sat with a doctor or therapist and gone over questionnaires. Maybe you’ve done your own research in books and online. Maybe it’s for your own needs, and maybe it’s for a loved one. But here you are, with the name of something concrete – Autism, ADHD, Anxiety, Depression, Bipolar, Borderline, OCD, or similar and related diagnoses – along with a list of best practices, a plan for therapy, maybe even a prescription. It is a relief to know what you’re dealing with, and to have an outline of how to deal with it.

 

Then, you’ve got your faith to get you through. You’ve got church, the sacraments, a support network of wonderful, caring people, and a wealth of spiritual reading and podcasts to encourage you. You might have a gratitude journal and some Scripture quotes at hand, and inspirational books by renowned authors who remind us that with God, all things are possible, and we can do all things through Christ who strengthens us.

 

So, why isn’t it working?

Why do we still feel empty?

 

Two possibilities: Burnout, and spiritual impostor syndrome.

 

“Burnout” here is not the idea that we need a vacation or that we’ve gone too long without having fun. “Burnout” here refers to neurological exhaustion, below the conscious level, which is not something we can manipulate with willpower or even completely prevent, if we are neurodivergent. Our bodily processing systems run 24/7, and anything we do that requires executive functioning (which is… everything) will add to the neurological processing load. Negotiating our sensory environments, both by having to filter out the excess stimuli imposed by our surroundings and by having to seek baseline stimuli in places we are forced to be still, contribute to that load. As our executive functioning begins to suffer, our capacity to be chipper and peaceful diminishes, and criticism from those around us increases. Burnout is whenever our load has been maxed out longer than we have been able to keep up. Basic neurological rest, a necessity for neurodivergent people, is portrayed as a luxury in the minds of most people, and not something we are typically allowed to do until after burnout begins.

 

In short: For neurodivergent people, depression and anxiety (and other mental health crises) are more often symptoms of burnout than standalone diagnoses.

 

To use an analogy, physical pain is often a symptom of something more complex at work. We can diagnose pain and treat it, and even take steps to prevent it, but if there is something beneath that pain – like, say, cancer – then treating the pain alone will not solve the problem, and our health will continue to deteriorate.

 

Here are some specific reasons why focusing only on depression, anxiety, and other mental health crises, is problematic when burnout is at play.

 

  • Most therapy techniques and self-help books on depression, anxiety and mental illness, including spiritual books, describe and employ behavioral approaches which require conscious control over our emotions and motivation – giving no thought to the health or capacity of our neurological infrastructure.

 

  • Any coaching, advice, therapy or self-help/spiritual book ought to account somewhere for the fact that moods, motivation and executive functioning depend on the health of our neurological infrastructure. Some do get there eventually, but usually it’s after a lot of focus on and unpacking surface symptoms, behaviors, and “attitudes.” Meanwhile, our neurological burnout continues unaddressed and depletes us (or adds to the deficit) even further.

 

  • Expecting anyone to feel gratitude, maintain motivation, or make resolutions when our neurological infrastructure is maxed out is unrealistic, a recipe for failure, and potentially harmful.

 

  • Neurological exhaustion is treatable with significant lifestyle adjustments and accommodations which need to be available at all times, not just until “things get better.”

 

To date, I know of no Catholic or any spiritual resources specifically addressing neurological exhaustion and burnout, or its effects on our spiritual lives. (Please, tell me if they are out there and I have missed them!) Which then leads to the next point: Spiritual impostor syndrome.

 

Neurodivergent people have very likely grown up being corrected and taught how to act in ways that are prescribed to and imposed on us, not spontaneous or authentic. We learn social scripts, and how to suppress big emotions, and how to behave well enough to be accepted by others. The cumulative effects of masking are just now beginning to be researched, and the impacts are dire. Human beings are not meant to follow scripts, nor are we meant to do things to earn other people’s approval – but this has been the thrust of most therapies and therapeutic techniques, even those best-intentioned, and it is what most people think of as “the right thing to do.”

 

A lifetime of masking our authenticity and working for other people’s approval takes a big spiritual toll. “Impostor” syndrome is what happens when scripts are “imposed” on us by people in charge. Their love or affirmation of us is entirely dependent on whether we follow their scripts. These scripts do not reflect our true needs, but nearly always reflect the “needs” of the people in charge to control and manipulate us. As a result, even when we follow the scripts and earn the approval of these people, we feel empty and hollow. We feel like impostors. If this was our experience as children, we are very likely to imagine God as also imposing scripts on us that have no relevance to who we really are and that His love and acceptance of us are wholly dependent on our following the scripts.  It’s what happens when the scripts become God.

 

How, then, do we take ourselves to prayer before God? Can we trust that we do not have to earn His love, too? Can we face God after we have unknowingly cooperated with our own shunning, cloaked in the idea that our neurological needs and expressions need correction (or that our traits are loathsome, bothersome, too much, not enough)? How can we forgive ourselves, and those whom we trusted?

 

How can we trust God?

 

Sometimes we might also need to ask –

 

Where has God been in all of this?

Why did God make me this way, only to let everyone tell me I’m defective?

Haven’t I suffered enough? Haven’t I already died to myself, over and over and over, ad nauseam?

If I am beautifully and wonderfully made, why am I still not good enough?

 

Any true “therapy” that deals with “impostor” syndrome begins with a fundamental sense of being loved by God that cannot be contained by or flow from any script. It is analogous to what happened to Saul of Tarsus on the road to Damascus. In the light of the love and grace of God, the scripts lose their power as their inadequacies become evident. The person who has been so touched by God will then need some time to rethink and reprocess his or her whole life in the light of the knowledge of being loved by a gracious God!

 

No spiritual resource on depression, anxiety, mental illness or even neurodivergence can be adequate by itself without looking squarely at these questions and entrusting the answers to God’s merciful love.

In the meantime…

Yes: We are loved by God.

Yes: We are beautifully and wonderfully made.

No: People may not have steered us in the right direction, as far as how we can thrive as neurodivergent people. That is only just beginning to come into the mainstream narrative. Good intentions are still good, but methods can also be re-examined and revised based on what we know better now.

 

No: Our moods or executive functioning capacities are not indicators of our spiritual skills, or our goodness as human beings, or our belovedness by God.

 

Yes: Gratitude journals are good things. But, No: They are not the hinge on which our mental health rests. When we are neurologically rested, we have the capacity to be grateful for many things. When we are neurologically exhausted, we need to focus first on restoring our neurological health, and then we can both think about and authentically feel gratitude. Imposing it on us, however it may be packaged, makes us… impostors.

 

To be continued.

 

 

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.

We Interrupt This Lent…

by Aimée O’Connell

 

Nearly three weeks into the Lenten season, I come to our readers with the following string of thoughts, under the category heading: NOTHING WE HAVE EVER HEARD ABOUT LENT WAS IMAGINED WITH NEURODIVERSE INDIVIDUALS IN MIND.

(Okay… since I am a stickler for avoiding absolutes, let’s say “Almost Nothing.”)

 

While the better time to post this might have been before Lent began, there’s something to be said about solidarity in the trenches.  By “trenches,” I mean the places where we find the people who…

  • Are still trying to think of what to do for Lent
  • Have tried adding things but have not yet made it happen consistently
  • Have tried giving things up but realize we don’t function well without them
  • Have sat staring at examinations of conscience and wondered when we will ever find one that applies to our lives
  • Have abandoned stacks of planners, devotionals, penitential calendars and mini-retreats which seemed like a great idea when we picked them up
  • Find Lent JUST TOO MUCH

 

Maybe this doesn’t apply to you (… congrats!).  Or, maybe you’re reading this and thinking this is not exclusively an autism or ADHD thing (… but I will say, even if that’s the case, I guarantee, we feel it much more intensely!)  Bottom line is, I don’t see much written about the particular challenges of Lent for the neurodiverse, and so, for those who find Lent penitential for the sake of its being unattainable: you are not alone!

 

My intention here is not to say that Lent should be jettisoned altogether, or that neurodiverse people should be dispensed from Lent.  What I do wish is that we could have some real resources available for the neurodiverse, a list of Lent Hacks for us to familiarize ourselves with and practice here and there so that when the actual season rolls around, we have something proven to work with.  I don’t claim to have the answers, but I do have a growing list of thoughts.

 

For starters: We need to define Lent consistently and concisely.  What IS Lent?  We know it is a time of prayer, fasting and almsgiving, intended to remind us that our purpose in life is to love God with all our hearts, minds, souls and strength, and to pattern our lives around loving God, particularly in how we treat others.  Some will say it is a time to steer our focus back to God and away from the distractions of worldly entertainments and luxuries.  Some will say it is a time to make room for God amidst the clutter of our lives.  Some will say it is a time to discard the things that tempt us away from God, or a time to develop habits of prayer, meditation and contemplation.  All of this sounds good, in a very general sense; but, for the neurodiverse, it can also sound too broad… not specific enough… not tangible, not measurable – and, therefore, not anything we can grasp, physically or conceptually.

 

What about when the things other people consider “luxuries” are, for us, necessities?  Who decides what constitutes luxury? If we go by what the devotional guides say, we end up going without things that we absolutely rely on, such as grocery delivery and prepared meals.  Even more difficult is teasing out what others consider “entertainments” which, again, for us, are necessities.  Many, many neurodiverse people can regulate, cope and function better with help from electronic devices with screens.  Many of us communicate and connect with others over electronic devices in ways we simply cannot do in person.  Who gets to decide what is adaptive and assistive, and what is “luxury” or “entertainment”?  I never see that distinction made in suggested acts of penance or fasting… just the same urging to switch off our screens so that we can be more present to the people around us.  (If that were possible, we’d have already done it).  Where is the line drawn between acts of penance and denying ourselves basic needs?  And why is it okay to lump the things that neurodiverse people successfully rely on to function, in with the things deemed superfluous by neurotypical people, without some kind of qualification?  Does anyone ever suggest giving up other assistive and adaptive accommodations that are acceptable standards for other disabilities?  Is it ever printed in a Lenten devotional, “Just for today, leave your walker or cane home” – or, “For these forty days, stop relying on closed captioning, and rely on God instead” – ?

 

What about when our executive functioning does not know the difference between “distractions” and “important items”?  Do the authors of Lenten devotionals realize that, for some people, what you call “distractions” are an integral part of our panoramic, multisensory processing, and can’t just be given up?  Moreover, if what others call distractions are a way of life for us, is any spiritual growth even possible?  All I’ve seen are essays and dissertations saying that distractions are our downfall.  There goes another category of things that sound good for typical people, but don’t apply to us, unless difficulties with executive functioning really do disqualify us as saints.

 

Another question: How can we know which way to pray best, when the suggestion is to “pray more”?  What if we have difficulty keeping all our tasks in mind for any given day, and are doing well, but do not have the cognitive flexibility to stop midstream and pray?  What if our functioning is stretched to its limit already? What can we give up, to make time for prayer, when we struggle with time-blindness?  What if praying feels too verbal for us on any given day?  We are taught that mental prayer takes focus and years of discipline, and requires things like stillness and interior silence which does not often come easily to the neurodivergent.  We may be outwardly silent, but inwardly, the trains of thought are running on multiple tracks at full capacity.  We don’t have the cognitive ability to just stop.  Where is that accounted for, in Lenten guides and spiritual direction?

 

As an autistic adult, I find the Lenten guides for children easier to use and follow than those intended for grown-ups.  It is easier for me to concretely count out some of my possessions with the idea of donating them, or to budget out a certain percentage of my income or savings for charity.  It is easier to count prayers or minutes or check-boxes than to try and do an assessment of my life and my habits – because my environment and my routines are all wrapped up in the wild and crazy way I make sense of the world and function in it.  And yet – when I pray by rote, and write checks because it’s the time of year to do so… it doesn’t feel any different afterward.  I’ve done my duty.  How does that bring me closer to God?

 

Making a list of Lenten Resolutions has likewise proven ineffective for many of us, mainly because it is the equivalent of taking our familiar flight plan and adding in several detours and extra stops – without the allowance of more time in the itinerary.  Calling our routines “autopilot” is not a bad thing at all.  Autopilot is a reliable means of getting from Point A to Point B in the face of all kinds of variables, interference and conditions.  Taking a plane off autopilot is not a guaranteed disaster, but it requires an enormous and constant expenditure of attention, energy and action.  While we can fairly say it will develop discipline among the flight crew, it will also put everyone on high alert and raise the potential for going off course and encountering difficulties, and demands our full, constant and immediate attention.  We all know that voluntarily adding stress to our already-stretched-too-thin processing systems is a straight line to crash and burn.  Changing our routines for Lent – at least, among the neurodiverse – is not a very useful idea; and yet, that seems to be the overarching theme to most Lent devotionals and calendars.

 

More and more, I see the need – a desperate need – for new wineskins for neurodiverse people.  We need guidance on how to approach Lent in the ways we are wired to approach anything.  We need permission to pass up the devotionals, calendars and suggested penances which are written for neurotypical lifestyles.  We need better examinations of conscience, written by neurodiverse individuals for neurodiverse individuals, so that we do not keep treating our failure to align with neurotypical standards as sinful.  Of course we sin, of course we are in need of forgiveness – but how many sinful habits have evolved from trying to do things in ways not suited to our wiring?  How much confusion comes from compromising our needs because we have been conditioned from the youngest age that it is of utmost importance to satisfy others?  How many times has our character been called into question over things we genuinely cannot change about ourselves?

 

We need to hear more from neurodiverse clergy, supported by more and better understanding of neurodiversity by the Church.  This is something I pray for every day.  I would like to see a prayer calendar with forty days’ reflections on how our Church can grow in this understanding and need for support.  I would imagine this would benefit the entire Body of Christ, not just the neurodiverse.

 

For now, my working plan is to see Lent as a season during which we invite Our Lord to show Himself to us in our lives, and to show us the ways our lives can be offered (i.e., made meaningful) to Him.  How does He use our neurodiversity to build the Kingdom of God?  How does the witness of our lives reflect Him to those in our orbit?  Do we spend more of our energy trying to know, love and serve Him in neurotypical ways than in ways that we are naturally wired to be?  Do we trust that He does not ask us to extend ourselves past our neurodivergent limits?  Do we trust that it is better to say “no” to resolutions that are not compatible with (and even harmful to) our physical, sensory or social processing?

 

It takes real courage to step out of the boxes other people would have us in, and be authentically and vulnerably who we are.  To me, that is the most radical offering we can make.