It’s No Better To Be Safe Than Sorry (…or, My A-Ha Moment)

Shamelessly, I out myself in that one statement as both a product of 1980s culture and an Aspie who, on seeing that iconic video of the song Take On Me, found it thrilling to think that somewhere, in some anonymous cafeteria, the portal does exist where one may cross from our lives as we know them to the stories of who we secretly long to be, kept safe under the disguise of ordinary comics.

My family never knew this… my classmates never knew this… and, I’d say my friends never knew this either, save for the fact that I didn’t really have any friends at this point in my high school career… but, I have tacitly been a secret agent for quite some time now.  At least, according to the comics I created in seventh grade and beyond.  It began nearly by accident – both the comics and the thrust of the main storyline – and yet, as I wrote more and more, the story of my odd identity took on life, and buoyed me, day after day, in my own anonymous cafeteria seat.

30+ years later, I see what those comics were to me: a coping mechanism and creative outlet, for starters.  But more so, they were my way to tell myself who I really am beneath the trappings of the environment in which I lived and functioned.  These comic stories freed me to be and say everything I felt.  I had a place in them.  I belonged.  And interestingly, the plot lines rarely revolved around acceptance or adulation.  Most of the time, I was a lone operative, and even within my own fictional setting, I was often not accepted.  My ways were different.  I was tolerated by my comic-peers because, somehow, I got the job done before they’d even started planning their routes.  It was not a matter of being accepted… it was a matter of agency.  I wrote the story, I took the chances, and I accepted the consequences.  Not all of my episodes ended well, but in each story, I was satisfied I had given my all… and, I eagerly awaited the next installment.  A far cry from my actual story at the time, which found me a high academic achiever with no social life and no sense of agency.  I did what was expected, and I did it well… but I was profoundly unhappy.  Hour by hour I pleased others to perfection, but never considered myself as an agent.  Funny, how I built my secret comic stories around agency.  Did I somehow know that this was the one thing missing from my true story?

As I think about that more, it’s true for many autistics.  We are seen from early on as needing help, needing therapy, needing intervention, needing the roadmap for how to live like others live… and, when we complete these exercises, we are praised for becoming more like we are told we ought to be.  We are just as often marginalized, even bullied, for being different, which only adds to our sense of non-agency.  We don’t always have bad childhoods, of course, but I dare say there is not one autistic who has not felt excluded in one way or another at least once.

What is “agency”?  It is the capacity to choose and act for one’s self.  Sure, there are social norms and societal expectations which are there for the common good of all and which ought to be known and followed.  But those finer points, such as what makes us happy, what makes us comfortable, and what makes us look different, are not critical to the functioning of the community.  “Agency” is just as much about the choice to wear comfortable clothing as it is applying for a job, even if our colors clash or our fabrics aren’t trendy.

I know I was very unhappy in high school because I had been taught, overtly and subtly, that ridicule and exclusion is for the weak, the lazy and the dorky.  If I sat alone in the cafeteria, it was that I did not try hard enough to socialize, or that my hair was combed flat and pulled back rather than teased high.  When my peers called me unflattering names, I yielded my agency to their version of the story, and I was ashamed I did.

But is it any better to be safe than sorry?  I tried and tried to rise to the standard of other stories that did not match mine, and I kept my “real” self hidden in my comic universe.  It was safe.  I was sorry.  And it was no better.

Today, I want to claim that agency, after all these years.  I want to be the one who decides what I do, because I trust that I do it for very good reasons.  I want to be who I always have been.  I may still be ridiculed or excluded, but I want to remember that those things – painful as they still are – do not affect the integrity of my story arc.  Perhaps wearing a fleece hoodie on the hottest day of the year makes others chuckle… but I am not writing it from their point of view.  I am writing it from mine, and that extra layer gives me superpowers they don’t see.  It regulates me.  It helps me feel safe.  And, when I feel safe, I function better.

That’s the story in which I thrive.   That’s the story in which we ALL thrive.

Maybe, for some, our agency remains secret.  For others, maybe not.  But, for everyone: It’s ours to claim, here and now.  Comics welcome, but not required.

– Aimee O’Connell

Life and Legacy

by Aimée O’Connell

When we hear “end-of-life planning,” we likely imagine meetings involving wills, property, funeral instructions and burial site selection.   It is not something we face with great enthusiasm.  For parents with children whose cognitive, emotional, behavioral and communicative skills are limited by autism and other conditions, end-of-life planning bears the additional question of how those children will be cared and provided for in their own adulthood.   It is a process which draws deeply on faith and hope that plans can be followed and provisions can be made to ensure that adult, disabled children can live the best and fullest lives possible.

And then… what will happen at the end of THEIR lives?

In many cases, planners take that question into account, and provisions are made to cover financial costs and instruct caregivers in general terms regarding the family’s faith background, place of worship and burial site.

One mom of an adult autistic daughter recently thought about this further, imagining what the end of her child’s lifetime might look like.  Who, in the family, will still be living?  Where will they be, geographically?  How many times will her caregivers have changed by then?  Will they be as familiar, as patient, as loving as those there now?

Who will be left, who truly knows her, at the end of her life?

The more this mom considered those questions, the more she realized that the core group of family, friends and caregivers who know her daughter now are the ones who appreciate her to the fullest extent.  These are the people who assist in carrying her daughter’s story – and, for the most part, they are a generation ahead, which means they will not likely be alive at the end of her daughter’s life.

With so great a focus on the pragmatic side of end-of-life planning, there is usually an assumption that, even if the deceased could not afford or arrange the particulars for themselves, they at least will have friends and family to memorialize them.

Here’s the point: What happens to people whose ability to be known is limited to being-with-them?  How do we memorialize lives lived beautifully by people unable to work, unable to speak, unable to plan and attend social gatherings for themselves, unable to make… unable to do those things which we typically rely on to describe a person’s legacy after they are gone?

Memorialization is a vital part of our human existence.  One need only look at monuments, national holidays and the persistence of obituary pages even as the rest of our newspapers scale back content in the digital age.  Death may silence our voices, but our stories live on.  Yet, when it comes to the severely impaired, our voices are not always heard even in our lifetimes.  How do we provide autistic and disabled people not just a funeral and burial, but an actual memorial, a lasting gift affirming that their lives were indeed of great and wonderful value?

This mom has started building a portfolio for her daughter, while friends and family are still healthy and within reach.  She is filling it with stories, memories, photographs, artwork and song, all by those who know her daughter and can describe her in beautiful detail.  When it is complete, this collection will leave no doubt in anyone’s mind who her daughter is and what she means to those who know her.  And, of course, this master scrapbook will be something she will have, and keep, throughout the remaining course of her lifetime.  Even if the end of her life finds her surrounded by people who only care for her or encounter her casually, her story will be a vivid window into who she is at her deepest core.

When we think about helping plan for an autistic person’s future, how very insightful to realize that their voice may not be remembered by the time their future fully unfolds.  Accommodations are not limited to those things we can do for a person now.  Assisting in telling a person’s legacy can be just as meaningful a gesture to their heart as helping them navigate their ordinary activities of daily living.

 

 

 

 

“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.