Autism Consecrated

Category: The Way of Saint Thorlak

  • 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.

     

     

     

  • Phantoms, Ghosts, Masks, Crickets

    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!