First of all, apologies. This site has been silent for some time. Other things have taken up my time.
Thirdly, I hope to get more interest in this blog again so we can continue on.
First of all, apologies. This site has been silent for some time. Other things have taken up my time.
Thirdly, I hope to get more interest in this blog again so we can continue on.
So I’d like to share what I take as good news. The question of whether I was on the autism spectrum has been raised ever since seminary. And as a child I was diagnosed with ADHD. After this issue had been raised in several ministry settings I’ve worked for I decided to get tested and found confirmation in what others saw. I was diagnosed with Autism (lvl 1) or what would have been known as Aspergers and ADHD.
Now when Aspergers had been raised I went into full research mode. And the results was that light was shed on all the issues I struggled with growing up as a kid and as a young adult. It was so revealing that when I sought a diagnosis there was a concern whether I had become too attached to this diagnosis. Yes I had but it was a relief to make sense of my life and my self image has been shaped accordingly.
ADHD was different. I assumed that this was a childhood diagnosis that went away with adulthood. It’s hard to diagnose many adults who have ADHD or Autism since they (and I) have learned skills to relate to the work place and to social life. We may be different and quirky but most folks in adulthood can accept that.
Childhood was different. My obsessions with maps, with countries and geography and with politics set me a part as a child. My inability to negotiate social life made it such that I used to pretend I was a country engaged in the process of foreign policy. Some countries are large and bullies. Others are not. And the rules for engagement could be set by that pattern which helped me negotiate the travails of junior high.
So adulthood has been better. Especially in negotiating a career path. In my case ministry. But something happened along the way. While most workplaces probably considered me quirky, in a social position that is filled with professionals, my differences have moved beyond something to be noticed. And that something can produce a great amount of anxiety in a congregation.
When I have obvious face blindness where I don’t remember regular church visitors, when I take people literally without realizing the underlying dynamic afoot, when my self presentation has to be perpetually fixed by members of the church, we move from a dynamic of clear ministerial leadership to a congregation that has to take care of its pastor. It, instead, should be thinking about its own needs.
But I did and do have the benefit of being a social extrovert who readily seeks other people and their advice. And in growing up that has served me well. I had many friends who could take me aside and explain social situations and tell me what is “cool” which helped me negotiate childhood. And your average Asperger book and support group is great in connecting with people over shared concerns.
But here’s the deal. The assumption is there is nobody on the spectrum to be found in ministry. And when I read autism books they assumed that folks on spectrum will work in a library, in computer science, in engineering, or in some field that does not require heightened social skills. So there are no books about aspies who are social workers, counselors, teachers, and ministers.
That is, for someone who thrives in finding common experiences and shared ideas, I find that there are no resources for those of us who are autistic and work in the church. I’m not even sure if there are clergy resources for those of us who have ADHD. This is unfortunate and it fails to open the church up to the leadership and gifts of those of us who are not neurotypical. And it sends unfortunate signals to parishioners who are also working through disabilities while they wish to serve.
But my guess is, I’m not alone. There must be other clergy and religious leaders in the church who likewise find themselves on the spectrum. Some may be “out of the closet”. For some, that may not be possible. But like the clergy project which tries to connect closet naturalists in the church, we need some way of providing support and share ideas in a safe environment.
So this is an open call. For those who are out and on the spectrum who serve the church to help build the basis of an organization of mutual support and the sharing of ideas that can provide an outlet for all, including those that remain professionally in the closet. My e-mail address is firstname.lastname@example.org and my church phone number is 405-534-1100. Let’s make this happen so that no one faces these challenges alone.
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.
“Nothing About Us Without Us.” This is such an important statement when it comes to disability advocacy. In my journey as a mom of a child with autism, I have had to change my thinking and my way of speaking about AJ, my child with autism. AJ has been nonverbal in the past but he has used an iPad to communicate along with a picture board, and now is becoming much more verbal. As he grows in being able to tell us what his needs and wants are, I am growing in my understanding that I can advocate for him, but I do not really speak for him. He does speak for himself, in words and in other forms of communication.
There is a great blog I want to share from Ivanova Smith, an intern at the ARC of King County here in Washington State where Danae and I live, who writes these very words: “Nothing About Us Without Us.” She also writes that we need to move away from Autism Awareness to Autism Acceptance. Read her article here.
For parents, when their child is first diagnosed with autism, they are given a packet of resources from the doctor or diagnosing team, full of information about services and parent support. I was never given information about how to connect with adults with autism or others to hear their experiences. I knew autism was a spectrum disorder, but all I knew at that time was my child, and later, other parents of children with autism. As much as we want to advocate for our children, sometimes our voice ends up being advocating for ourselves. We complain about lack of resources, but our complaints can turn towards our children, instead of advocating for them.
Now that I know autistic youth and adults, I realize where I have been speaking for others with autism, instead of listening. In the church, we need to include all people of all abilities. We need to include disabled people not only in worship, but in leadership. We need to be better about including people with autism, especially our pastors, youth leaders, music directors and others.
So I am writing now, but we are reaching out to invite others with autism to share their experiences of church, to build a more inclusive vision of who we ought to be as the body of Christ. I invite you to comment here and introduce yourself, and perhaps you can share your story as well.
April is Autism Awareness Month. Two years ago, I wrote this post for [D]mergent on how to raise awareness and acceptance of individuals with autism in your congregation. I have included the text below, and hope that we will continue to add to this to raise awareness in our congregations.
Note that this article was geared towards children with autism and their families–we definitely need to expand the welcome, awareness and acceptance to adults with autism in our congregations and leadership as well.
Autism Awareness in Your Congregation
April is Autism Awareness Month. As you may have figured out by now if you are regular readers here, JC Mitchell and I are the parents of AJ, a 4-year-old with autism. We’re not the first parents to have experienced not-so-welcoming churches, and we’re not the first clergy parents of a child with special needs to advocate for their child. There are some great resources available and I encourage you to check out resources on welcoming people of all abilities. You can also read back through JC Mitchell’s posts or mine, especially The Starbucks Welcome.
But here are a few tips to help get you started when a family with a special needs member asks about coming to your church or shows up on Sunday morning:
–First, welcome them. Greet the family like you would anyone else. Do what you would normally do for new visitors to help them feel welcome. In one church I visited, a few members chose to sit with me in the back where I was sitting, so I was not a visitor with my child by myself. It’s a good idea for any visitor to have someone sit with them and worship with them!
–Ask questions about what would make them comfortable and what would be helpful. For example: “What is the best way to interact with your child?” “How can we help you this morning?”
–If the family has a child and you have childcare or Children’s church during worship, invite them to those places but don’t pressure them. Some families prefer to have their children in worship with them, some children won’t leave their parents and go with strangers. All churches are different, and many newer churches are including of all generations. If a child goes to a different space than the worship service, ask questions about what their needs are and what can be done to help. Don’t assume you have to have professional child care workers who know about autism or other special needs (most parents haven’t had professional training, either!) Just ask basic questions about their needs, especially any dietary restrictions or allergies (just like you would for any other new child) and assure the parents their child will be safe with you. Make notes and listen if there are any specific concerns (for example, our child will wander if he is in an open area—he likes to explore). It is ok to ask a parent to help with a specific situation—such as using the bathroom if the child has toilet issues. But by all means, do your best to allow a parent to return to worship or Adult Sunday School as you would with any parent.
–Have child and adult “helpers,” if you have other children in your church. Identifying a slightly older child or youth who likes to help with children can be a great asset. For example, there is one older child in my husband’s church whose job it is to keep a specific eye on AJ so he doesn’t wander off during Children’s Church. Other adults who maybe don’t want to be drafted for Sunday School might be willing to help out with a child with specific needs.
–If a person with special needs remains in church, know that they will not all respond the same. Some may be sensitive to loud noises; others (like my child) may make some loud noises. Some people have to get up and move around. Some families choose to sit in the back and others choose to sit up front. As I have always shared, I often hear the sounds of adults saying “Shhh!” louder than I have heard any child’s noise. Know that there may be some distractions, but as a special needs person gets used to the worship, the routine and structure, they will be more comfortable and surprise reactions will be reduced.
–Don’t assume all families of people with special needs want to immediately connect with other families of special needs—most likely, they just want to connect with this new congregation! If they ask about other families with special needs, then help make the connections, but otherwise, introduce them and get to know them like you would anyone else.
–If a family looks like they have had an uncomfortable experience, ask them what you can do next time to help be more welcoming. Show that you are willing to listen and learn.
See a pattern here? Most families with special needs simply want to be welcomed like everyone else. And all too often, they aren’t. There’s an assumption made by well-intentioned church members that the needs are greater than what we can care for, than what we can provide. There’s worry about situations that might come up. Most of the time, parents have thought this through before even stepping through the door. Most families are aware of what information needs to be shared to make a comfortable experience for everyone.
I know that as a pastor, I don’t always have it right. There are times I still have failed to make people feel welcome, but I try to learn and work with my congregation to help make children and adults of all abilities feel more welcomed and included in worship. So this month, for Autism Awareness, let’s all try to do what we can to be a little more welcoming of people of all abilities, members of the family of God.
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.
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.
I had intended to try to post every day, starting January 1st, for a year. That was broken yesterday because my son AJ fell at school and broke a bone in his right foot. After spending the afternoon and evening in the local ER, we came home with his foot in a splint and are off to Children’s today.
This post doesn’t have much to do with church, but it is so difficult for a child with autism who is non-communicative to understand what is going on and to explain to him why he can’t put weight on his foot and has to wear a big splint. He kept trying to pull it off for most of the evening and kept taking our hands and putting them on the splint, indicating his desire for us to remove it, and we kept having to say “no, sorry.”
My child is usually very active, running, jumping and climbing everywhere–and it is heartbreaking to see him unable to stand up, unable to move around easily, and he is clearly frustrated by it.
It was also frustrating to have to repeat “he has autism, he doesn’t communicate” to several of the doctors and nurses yesterday. Most got it. But one nurse did not understand, and when they called in an order for pain meds, we told her (as we had told the intake nurse) that he will not take medication orally. She was frustrated and basically stomped out of the room. Incredibly rude, and not helpful–and never came back to offer another solution so he was never given pain meds in the hospital. Something we will have to report later.
But the ER doctor and the other staff were great. And AJ was able to communicate somewhat. He said “scary, scary” to us. He said, “Mommy, mommy,” when the nurse started to wheel him away (I was right behind him but he couldn’t see me) and he said, “Help, help.” He let us know what he needed, and exhausted and tired at home, he let us know he wanted juice and peanut butter and jelly, his favorite.
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.
This was a piece originally published on [D]mergent back in April 2014 for Autism Awareness Month, about a time my son wandered off (and we had to call the police, but we did find him about a block away) and thinking of the time Jesus wandered off at the end of Luke chapter 2. As we near the end of the Christmas season (the Twelve Days of Christmas in the Christian tradition) and away from Jesus’ childhood, I thought of this and wanted to share.