Category: General Updates

  • When diagnosis and treatment are not enough

    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.

     

     

  • A Prayer for the Autistic Souls

    A Prayer for the Autistic Souls

    For All Souls Day, let us offer this prayer for the autistic souls:

     

    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.

     

     

     

  • The Urgent Need: Autistic Mission

    The Urgent Need: Autistic Mission

    by Aimée O’Connell

    Earlier this week, I referenced a recently published book intended as a field guide for bishops and seminary faculty in guiding and supporting autistic men discerning and responding the call to the priesthood.  As an autistic person, I feel the need to call attention to all that this book represents and its implications for the Church at large.  As a married woman, I am in no way qualified to speak about the priesthood or seminary formation – nor do I intend to.  However, as a member of the laity, I am charged with the same call to holiness and prayer as all my brothers and sisters in Christ.   I am the mother of a son who one day may himself feel a vocational call, if that is God’s plan for him.  I am a member of a Church begging for new vocations, more priests, pleading with Matthew 9:38 that the Lord will send more laborers to the harvest.  I may not be a seminarian, but I most certainly have a stake in the lifeblood of the Church – as is true for all members of the laity, men and women, all ages, all abilities, all neurotypes.

    It does not matter who wrote this book or who endorsed it – by name, anyway.  This is not anything personal.  My observations are global, pointing to the big picture, and casting no blame on anyone in particular.  I pray that those reading this will follow likewise in seeing the system view rather than seeking out individuals.  We are all members of this same Body of Christ, with the same mission of actualizing the love of Christ in the world we live in.

    In short: This book, Autism and Holy Orders, may fairly be characterized as a de facto policy statement of sorts, written in conjunction with and on behalf of Church leadership.  It makes public the working model which the Church holds on what autism is and how it is to be lived.  It bears the seals of approval by representatives of the Catholic hierarchy as well as those of Catholic religious orders, Catholic academia, Catholic seminaries, the Catholic diaconate and the secular field of clinical psychology.  This takes in a very wide swath of predominantly Catholic representation from on high, and one can assume that endorsements at this level trickle down through the ranks to each tier of leadership and staffing, eventually shaping the actions and opinions of staff and volunteers at even the parish level.

    It is fair, then, to conclude that the prevailing approaches, attitudes, and beliefs of our Church toward autistic people are at least twenty years behind where the current and reputably acceptable understanding of autism is in the rest of academia, the healthcare and helping professions, and actual lived experience.  And this is a huge problem.

    One need conduct very minimal research to see how autism has progressed from grossly misguided and stigmatizing treatment to much more humane, compassionate and accurate approaches informed by neuropsychology and the collective stories of actually autistic individuals.  The collective dialogue about autism has grown substantially and the global understanding is slowly coming around to see that autistic people thrive when allowed to be autistic, rather than following a pathology-driven model of symptom elimination.  Though the challenges of an autistic neurotype remain the same, contemporary approaches draw on personal assets rather than deficits and encourage autonomy through identifying those skills which would be most helpful to each individual.  Emotion regulation, distress tolerance, interpersonal effectiveness and coping ahead are skills that any person needs, but can also be tailored individually to fit the configuration of autistic people based on where they are finding the most difficulty. But, lest this paint too rosy a picture, I will add that it is still an uphill climb.  Meltdowns, burnout, shunning and stereotypes still exist all over the place.  The difference is that we as a collective society have more tools and better ways to frame things than we did twenty years ago, so there is better hope for better growth and thriving than in the darker days of autistic history.  People finally know that Rain Man is not the last word on, or the most accurate picture of, autistic life.

    Enter, then, this book – published September 1, 2022, as a long-awaited guide for the Church in shaping and forming autistic men for holy orders.  In fact, once I started reading it, I realized the Church has waited TOO long to start looking at these questions.

    Again, I emphasize that I read this book as a member of the laity who takes my call to pray for priests and vocations seriously, and as the mother of at least one person who may – who knows? – one day hear that call for himself.  And so it is that I speak up as one who is very concerned, who wants very much to support priests and vocations to religious life, and who recognizes that the pool of prospective members likely reflects the same demographics as we see in the mainstream population.  If we go with the one-in-44 estimate, debatable or not, we can safely assume we have several autistic people among us in every parish, in every diocese.   How many autistic people are called to religious vocations?  Only the Holy Spirit can answer that.  But it is our responsibility as fellow members of the Church to support all vocations, including those stirring in autistic individuals.

    Thus, I raise the alarm.

    Alarm? Isn’t that a bit melodramatic?  Not really.  Take a look at this review of the book by an autistic priest, and tell me afterwards if I am being dramatic.  Considering he was ordained 35 years ago, it is fair to deduce that he came of age during that time when autism was less understood and widely pathologized.  His words suggest that he has endured a lot of pain as a result.  While we can shrug and say that this was an unfortunate matter of people not knowing about autism like we do now, how can we reconcile that when this book – filled with the same pathologizing characterizations – was just published?

    This needs to stop.

    I have no answers.  I have no idea how to bring the Church up to speed so that she can work hand in hand with her autistic members in a way that is accurate, compassionate and truly nurturing of who we are.  I just know that if this book is commensurate with a policy statement, we’re in trouble.  I would feel the same way and make the same statements if a book like this came out in any other context – school boards, medical societies, secular academia – and I would issue the same call that I am now.

    The Church is in the dark about autism. We, as autistic Catholics, need to be light.  We need to be visible.  We need to be who we are, as brightly as possible – because the Church is not seeing clearly.  The Church is stuck in the same rut that paints autism as a burden, a puzzle, something to be swept under the rug or passed over as quickly and deftly as possible so as not to draw attention to anything that looks or sounds different.  The Church is not comfortable with us as we are.  And this is not just limited to holy orders; ask any autistic person who has tried to participate in ministries, leadership roles, youth groups, sacramental preparation, faith sharing… and found them inaccessible, impenetrable and immutable.  Has nobody yet heard of universal design, or is it too scary to think of introducing something new at the institutional, diocesan, seminary or parish level?

    We autistics have spent our lifetimes learning ways to grow and thrive and accept that non-autistic people do things differently.  We have been explicitly taught scads of social skills and social graces, scripts that help us come across in ways that supposedly pass muster so that we are taken seriously.

    It’s time to model this for the Church.

    It’s time to model compassion, active listening, comprehension, acceptance.  It’s time to model patience with a system that appears to us as lacking empathy, slow to understand and rigid in its ways.   But hey… we’ve been there.  We have both the experience to teach and the capacity to forgive.

    If I may, allow me to paraphrase Ross Greene in closing: The Church’s stance on autism is challenging because it lacks the skills to not be challenging.  Skills do not just drop out of the sky; grace, however, makes all things possible.  As autistic Catholics, our mission seems clearer and clearer: We must be the light that is currently lacking. We must pray, be visible, and be the truth that makes up for twenty-plus years of systemic turning away and not seeing the pastoral necessity of understanding neurodiversity.

    May God help us all in our mission.