Autism Consecrated

Author: Autism Consecrated

  • Pastoral Ministry to Autistic Christians

    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.

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

    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

    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.