Tag Archives: spectrum

Thinking about God and Aspergers

I’m being more autobiographical than I usually am when writing a piece like this. My interest in Aspergers and Autism developed in seminary when a young boy in the congregation, I was an intern with, was facing the challenges of Autism Spectrum Disorder (ASD). In learning about ASD it became evident that I shared a number of similar characteristics. While I have never been officially diagnosed, I recognize something of myself in those accounts of those who have been.

To highlight a few characteristics: “Those with Asperger’s syndrome have problems with the social aspect use of language. They see language as a way to share facts and information (especially about special interests), not as a way to share thoughts, feelings, and emotions. They may have a narrow range of interests which predominate their life. Individuals have difficulty with gross and fine motor skills. The difficulty is not just the task itself, but the motor planning involved in completing the task.”

Other characteristics can include mind-blindness, or the inability to make inferences about what another person is thinking, face blindness, awkwardness in social relationships and heightened sensory sensitivities. Because we’re talking about a spectrum, some may have some or all of these characteristics in varying degrees. ASD never looks the same for any one person.

I wanted to highlight the above characteristics because they relate to what an issue a number of researchers have run into. That is the predominance of atheism and agnosticism among those with ASD. And for those of us who are theists, the unique ways in which God is conceived. For most believers a number of studies have suggested, God is a personal agent with intentions and feelings and your interaction with God is best understood as an interaction with another mind, whereby you imagine their intentions towards you. And these interactions, whether in prayer or worship, excite the same areas of the brain as if I was to have a personal conversation with my neighbor or a good friend on the phone.

One can see how a weakened theory of mind will already weaken one’s personal sense of God as a personal agent. But it isn’t just God. For many believers, events, even ordinary ones, are occasions for purpose and intention. Why did you win the lottery, get into the car accident, or even why did someone call you at the exact same moment you were attempting to call them? There was a broader intention afoot, which led to this. Thus good events are not just bare events, they generate a sense of something bigger.

And bad events raise existential questions. How could a good God allow x to happen? In either case, those without ASD are primed to look for intentions while those with ASD are not likely to think in this manner. It was interesting that while religious believers saw events having a purpose, a teleology, atheists had to reach for anti-teleogical reasoning to argue why there was no larger purpose to an event. For those on the spectrum, it never occurred to them to think there was anything behind an event happening in the first place. You can imagine how seeing God’s activity in the world would be impacted by how you think about events.

Now I want to backtrack to my own experience of religion. I grew up Lutheran and Presbyterian. They were heady churches, that is, we sang from written texts, read responsive readings, including our prayers, most features of church life responded to our cognitive skills. The one area that was lacking was lots of emotion and feeling, which fit well with my own personality.

It wasn’t until I was in college, when my faith was continually questioned by evangelicals, that I had to think why it was that I was a Christian in the first place. They certainly questioned my left leaning politics and the fact that I believed God was at work in other religions. But I also think there was a question about my lack of “feeling”. I would attend evangelical gatherings with friends as well and you would see students, practically in tears, sweating, crying out to God and Jesus. That always baffled me and I suspect made me suspect in their eyes.

On top of that, the way people talked about God, as their personal friend who they would share any number of conversations with and in which God would always respond back verbally had no connection point in my experience. If I said I was a Christian because I was baptized, confirmed, spent my life in the church it would be met with derision. Actions were of no consequence, having a personal emotional experience of God was. At the time I thought my response was inadequate, but looking back, it was a perfectly fine response. That is, I’m more convinced that actions and what we do in community says who we are in our religious life.

I don’t want to speak ill, though, of those evangelical friends in my life while in college. They started me on a bit of a journey. I started to read theology, as much as I could get my hands on. I started to try to piece together a vision of God and religious faith that was not just inherited but made sense to me. In that I had a number of campus ministers that encouraged my questions, my journey, even my doubts. That was key for remaining in the church and finding myself in campus ministry at this time.

Later I would I come across the writings of Mordechai Kaplan, who was the founder of Reconstruction Judaism. And soon after that I came across what was known as the Empirical school of theology. It starts with the premise that we can know and experience God by looking at what it is that God does in the world. For instance, if we say God is the source of salvation, then we would ask, what works in experience to produce salvation and transformation? That would be divine! Or if we say God is the creator, then we could ask what grounds creativity, what are the processes involved that leads to the creation of the new? There you will find God. Or if God is the source of individuality and community both, then finding what leads to creating free individuals who are able to share their gifts in community will be of central religious importance.

In that, I was experiencing God all along. Not as a being but rather as a name which encompasses all sorts of saving activities in the world. Not as an otherworldly cosmic person, but in the concrete stuff of life that is experienced, in my life in the church, family, friends, my loves and passions, the larger environing world.

This is not because I became teleological in my thinking, suspending contingency. Rather I could see God as the interplay of events out of a contingent situation where the good could happen as a result. A divine factor in the mixture of life, neither omnipotent nor the sole factor but nonetheless a quite real result when something good, true, and beautiful happens. Not a thing but a relation between what is and what can be, not a noun but a verb, not a determiner but rather that which lures us to cooperate in the creation of the better.

I suppose it could be said that I’ve developed a non-personal concept of God that is not in sync with the norm, which itself could fit an Asperger profile. Though I think it’s important to raise a distinction between persons and the personal. Persons are distinct individuals, organisms with brains, bodies, etc. But to be personal is share in some of the characteristics of personality. For instance, consistency of action, a character that one can depend on over time, that which is affected by its interactions, etc. For me God is not a person but God is very much personal.

It may not be a God who is a pal to have chats with, but it is a God in which I engage in prayer. Such prayer has a way of naming and reminding who I am and who God is and what follows from that as a result. Sacraments have the same power for me, visible signs of what God is up to when we share a meal together, when we make promises to one another, when we seek reconciliation. Much of the church calendar does this as well for me, it marks time and its meaning. And life in the church has a way of connecting me to both the past and the future in a visible way. You can see a kind of intentionality, in hearing the stories of those who built the building, refurbished the Sunday school rooms, as much as in anticipation of what future generations will do.

So yes I seem to buck the trend in embracing the idea of God, at least  for those who are on the spectrum. And despite not recognizing faces and still missing social cues I find myself in the position of being a pastor and seeking to open up a tradition to those who have seen it closed to them, because somehow they have been told that they don’t fit in. Could be a calling of sorts.

Different experiences, different lives, different language

It is a joy to be working together on this blog with Danae. Danae and I are both members of The Young Clergywomen’s Project which is how we met originally, but her husband Henry and I go way back–more than ten years ago–to a church in Newton, Massachusetts where I was the Associate Minister and Henry was the Minister of Music.

Danae and I have a lot in common, and we’re good friends. We have a few differences, too. She is an Episcopal Priest; I am an American Baptist minister. Her church experience is more liturgical (what some may call “high church”) and my church experience is more free-flowing (what some may call “low church” or “free church”).

We also have different experiences with autism. Danae’s work has been with adults, and of course her marriage to Henry. Danae’s experience is more with high-functioning people on the spectrum. Typically, many adults and youth who are higher-functioning self identify as “autistic.”

My experience has been primarily with children as a mom to my son AJ. AJ has what is often called “classic autism” in that he is delayed with verbal communication (although he is growing leaps and bounds every day) and other basic functions. My husband and I prefer to say “AJ has autism.”

The difference here is language, and for some, this is just semantics. But for us, person-first language is important so that we remember AJ is one child on the autism spectrum. Also, because he is not speaking for himself and we are speaking for him at this time, it is a conscious choice we have made to say he “has autism” rather than he “is autistic.” The Arc, a national organization for persons with disabilities, has a great article on person-first language.

Nonetheless, as deaf and blind communities have reminded us, you cannot separate out your identity. You are who you are. And youth and adults are reminding us that their identity is important to them. Calling themselves “autistic” is empowering, and sometimes our attempts to lift up the person first have failed to lift up the most important part of their identity, how they perceive and function in our world.

So on this blog, we will use both terms. Neither use is meant to be offensive or demeaning at all, but rather to empower others who identify using the term “autistic” or those who prefer to say “I have autism.” As my son grows, I imagine we will continue to have this conversation and speak about him the way he prefers, which of course is to always begin with his name. He is AJ. He is just one person on the autism spectrum, but he is the one I know best.

And of course, we are going to invite individuals to write for our blog as well and speak about their experiences in the church, what is helpful for them and what we need to do as a church to be more inclusive of all of God’s children.

Marriage + Church + Autism = Forever?

I (Danáe) am not an expert on autism. I’m a person, probably like you, who is affected by relationships with folks who are on the autism spectrum. I’m an Episcopal priest and my husband (who is on the spectrum and has what was formerly known as Asperger’s) is a professional musician who is the part-time music director at a local church (not mine). We are not unlike a clergy couple because we both have to find calls (jobs) in churches and sometimes that is difficult.

In the beginning of our marriage, my husband was willing to move wherever I got a call because he felt like he would be able to work anywhere. You see, he typically works part-time at a church (he is an excellent music minister–truly compassionate and collaborative) and fills the rest of his time touring with different groups, renting and repairing historical keyboards, and composing. His thought was, “As long as I have an airport, I’m fine.” Well…not quite, as we discovered.

Our first move was to a rural area an hour south of Rochester where I served seven village churches with another colleague (traveling hundreds of square miles) and my husband tried to get different musical projects going and they just didn’t work–not because of his lack of effort or expertise (he pretty much rocks in the self-motivation department and, being on the spectrum, is of course an expert at what he does), but because of the area we were located. When you take someone who has laser-beam focus and ambition and have every door close in their face, you end up with a depressed person whose same focus turns inward. Perseverating, catastrophizing, (“I’m not doing enough! [yes, he was] I’m not working hard enough! [yes, he was] It’s my fault that nothing is working! [no, it wasn’t]”) and meltdowns ensued.  Bad, bad news.

We moved, after only being in that area for eight months, to the Twin Cities where I had taken a new call. This time, we thought, it will be good. Airport? Check. Metropolis area? Check. Known for music? Check. It was good in many ways. Unfortunately, my husband got stuck in a job at a church that squelched all his gifts and we needed the money so badly that he felt he needed to stay (did I mention that being a minister of any kind is not lucrative?). So again, a person with laser-beam focus and ambition is being denied opportunity for self-expression. Same result as last time, although not quite as bad because we had made some wonderful friends that helped alleviate the disillusionment and dismay that was suffered.

Are you noticing any patterns yet? We sure did.

What I did next was to tell my husband that we would move for his job, not for mine. I am not on the spectrum and my personality and skills are a lot more flexible, so I figured that I would find something wherever we moved. So that’s what we did and it seems to be working out better this time. This has not been without stress (I’m working part-time at a church, so money is even tighter), but those stressors are minor compared to dealing with a person on the spectrum not being able to express themselves authentically.

So, we are both wedded to the Church for now, but what is most important is that we are wedded to each other forever. As the non-spectrum spouse, I have found that it’s up to me to be more flexible person because I know that in some ways my beloved just can’t. I’m fine with that, but I know some spouses have a really difficult time with this aspect of being married to someone on the spectrum. Some have asked, “Where have you found God in this?” Everywhere–through relationships with therapists, friends, support groups, and family to every day moments with my husband and our dog. We could not have worked through this without the grace that God has given us in each other and I know God more deeply because of our marriage. For these gifts, I am ever grateful.021

(Un)Resolved

This is a piece I wrote for Edge Pieces, the blog of Open Gathering. Open Gathering is a church started by my husband, J.C., (and I am now on staff there as well) that is open to all people but especially children and adults with disabilities and their families. The vision really began as a dream for our son, a church in which he would be free to worship as he is, and at the same time introducing the Christian story and worship experience to him and others, including neurotypical children and adults as well as people of all abilities.  To learn a little about our church, you can visit our website, and you can click on this article I wrote for the UncoSynchro blog theme for January.

http://opengathering.org/unresolved/

First Steps

I began blogging about our journey with autism over three years ago, just before our child was first diagnosed, over on my site Rev-o-lution.  At the time, in 2011, my family lived in Oklahoma. This first blog entry, “Top Ten things I have learned along the autism spectrum journey” sums up a little of what I had experienced prior to AJ’s diagnosis, as it was written the day before.  The evening after our son’s appointment and diagnosis, I wrote “1 in 110 children, 1 in 70 boys” (which was the diagnosis rate statistics in 2011–it is currently 1 out of 68 children and 1 out of 42 boys according to the CDC).  And about a year later, once we had moved to the Seattle area, I wrote “The Starbucks Welcome” about challenges we have faced, as well as times we were embraced by the church when visiting with our child with autism.

These were my first blog posts. The first steps for anyone to learn about welcoming people with autism into the church is to listen to one’s story. Listen to a family with a child with autism. Meet an adult with autism. Listen to their stories. Learn their challenges as well as their gifts (notice in both blog posts, I listed some of AJ’s gifts). And if you are a parent of someone with autism or you yourself are on the autism spectrum, it is important to share your stories, too.

Welcome to Autism and Church!

Here we will blog about our experiences of having a family member with autism and ways in which church is enhanced by having people with autism as members. We will also blog the challenges and difficulties, suggestions we have for church to be more welcoming, and more. We also invite and welcome individuals with autism to share their experience as well!