Aspergers and the DSM

National Public Radio had a story yesterday about the upcoming changes to the Diagnostic and Statistical Manual or DSM, which will come out with a new edition in a few years.  The DSM is basically the bible of psychiatry, so whatever gets into the DSM makes a big impact in the wider society.

Back in 1994, when the DSM was last updated, Aspergers was added.  I think for people like myself who stumbled around for years wondering what was wrong with them, adding Aspergers to the DSM was a godsend.  However, some don't think it was a good idea. 

In a small condo on the beach in San Diego lives Allen Frances, who blames himself for what he calls the "Epidemic of Asperger's." Frances edited the last edition of the DSM, and he's also the new DSM's most prominent critic.

Frances is the one who put the word Asperger's in the DSM in the first place, thereby making it an official mental disorder.

In the editions before Frances was editor, there was an entry for autism, but it was defined by severe symptoms. Frances says doctors felt the diagnosis for autism didn't cover a more mild disorder they were actually encountering.

"Pediatricians and child psychiatrists would see kids who could talk but who had social discomfort — severe social discomfort — and awkwardness and a very restricted and impairing level of interests and activities, and they wanted a diagnosis for this," Frances says.

A study was done to figure out how common Asperger's was, and the results were clear: It was vanishingly rare. Then Frances put it in the DSM, and the number of kids diagnosed with the disorder exploded. Frances remembers sitting in his condo reading articles about this new epidemic of Asperger's that was sweeping the nation.

Frances then talks about how schools have created an incentive to allow kids that might be a bit eccentric the chance to have one-on-one learning instead of being mainstreamed.


A few thoughts:

My mother told me shortly after I got my diagnosis that she had asked doctors on more than one occasion if something was going on behaviorally.  The doctors all assured her things were okay, and to some extent, they were.  But this was also the 1970s and early 80s and if anyone knew about autism, it was about the more severe Kanner's Autism.  I was a kid who could talk pretty early and the only issue was that I was a bit odd.  That didn't fit what was the definition of autism back then.

Moving to the present, I can say that it has been incredibly helpful to know what I'm dealing with.  For years, I bounced from job to job doing things that would enrage my associates and not knowing why.  I would try certain jobs that just were a disaster.  After ordination, I would do things that would upset people and not even know I was doing something to piss people off until it was too late.

The thing is, having a diagnosis has allowed me to see what I can do, what I can't do, and what things I need to learn and overcome.  I don't have to stumble around in the dark anymore thinking that I'm a terrible person.

Has the diagnosis been overused?  I don't know.  But we've also seen a spike in people getting diabetes and we aren't suggesting those diagnoses are overused.

Maybe there are problems when a new illness enters the DSM, but I think I'd rather err on the side of doing too much instead of too little.  The costs of diagnosing someone with Aspergers might be high, but the cost of not doing anything results in loss productivity, stress, depression and other problems. 

My life has been changed for the better because I got a diagnosis of Aspergers.  It would be nice if Dr. Frances saw that.

Come and Visit My Church

A few years ago, I got a call from someone who wanted to visit Community of Grace, the church start that I did a few years ago.  The person wanted to know about the church and it seemed they were interested in benig part of a church with a big choir and all that.  Well, we didn't have all that.  At best, we were a bunch of folks who came together to worship God.  The person didn't sound pleased, and hung up right away.

Part of being a pastor is trying to create relationships that hopefully will bring people into the doors of a church or gathered community.  I've been fascinated to see how Steve and Rebecca Haney who are leading a new Disciples church plant in Rochester, Minnesota are growing their community.  Steve has told me about how he has gone to various community meetings to strike up conversations that then lead at some point to faith. 

I look on all that with envy, because it's not something I can do.  I've said this time and time again, but being autistic makes the kind of social engagement that Steve does very hard for me.  I don't want to give the impression that I'm blaming Asperger's for everything, I'm just stating what I know.  But I don't think it's impossible for someone with Aspergers to be able to talk about their faith: it's just harder.

But this all means trying to learn the artform of talking and sharing that seems so foreign to me.  What I'm good at is sharing information, which is what I do for a living.  But sharing information and sharing your life with someone are two different things.  I think I'm learning to share my life with others, but it's still an uphill climb.

This all leads to inviting someone to come to First Christian in Minneapolis.  Again, I'm not good at the art of persuasion, just sharing information.  But I think I can use my information, my observations to paint a story on why this church is special, so here goes.

First Christian is not a big church.  We are a small church of about 100-120 members.  We were a big church a long time ago, but people left and the church has grown smaller.  So, we aren't the big, downtown church.  We are the small, urban church.

If you come to our present building on a Sunday morning you will see about 80 people gathered in a sanctuary that seats about 800.  That might seem rather pathetic and I know it saddens a lot of the long time members.

But I think that this church still rocks and I think you should come to this church.  And it's not because it has two, slammin' pastors. ;)

First are the kids.  We don't have a lot of kids, but these kids are special to us.  They are the "little theologians" who teach us how to be followers of Jesus.  They aren't just trotted out during a service to show off how cute they are, but they are becoming a part of our worship and formational life.  In their simple words of faith, they can run circles around those of us with advanced degrees in church stuff.

Second, is the mission.  This church likes to think it is not engaged in mission- not like the big churches down the street.  No, we don't do mission that way.  But I've never seen a more engaged bunch of folks willing to "get dirty for Jesus."  When I ask people to pack food for hungry kids around the world, people show up.  When I ask them to spend a day at food pantry or donate items for former homeless persons, they are present and accounted for.  When asked to help a ministry half-way around the world, they do so.  This church has people involved in refugee resettlement, prayer shawl ministry and other works of compassion.  They tend to "punch above their weight" in how many people in the church participate in acts of mercy and justice.

Third, is the committment to inclusivity.  A lot of churches talk about being inclusive, especially to gay and lesbian folk, but this church really practices it.  There aren't a lot of churches that would accept having an openly gay person as one of their pastors and yet this church has.  But it's not just me- this is the kind of church where a kid who grew up in the congregation can feel safe enough come out at the Christmas Eve service.  True story.  This is the kind of church where a straight woman who loves kids decides to start a ministry for gay youth and the church allows her to follow where she feels God is leading.  And they even throw some money at her to help. 

This isn't a "program" church.  First was a program kind of congregation years ago, but it at its present size, it's far more pastoral than program.  So if you come to visit, don't expect a youth program or outreach program.  Instead, you will find a woman who is excitied to teach one or two teens or the young adults coming together to make cookies for persons with HIV/AIDS and the like.

First Christian isn't going to be a church for everyone.  If you want a church with  programs and lot of people your age, then we aren't going to be your church.  If you want a church that's packed with people, then we aren't your church.  There are lots of other churches in the Twin Cities to fulfill those purposes.

But, if you want a church where people will welcome you not just to be nice, but because they really want to know you, this can be a church for you.  If you want to get active in ministies of justice and have ideas, this might be your church.  If you want a community that cares for each other and welcomes those outside its small circle, then this is your place.  If you are a gay person that hasn't felt loved by a church before, this can be your church.  If you are autistic and wonder if a church could accept your "oddities," then this is the place for you.  You get the point?

As a pastor, I'm probably not supposed to brag about the church I serve, but I do think it is pretty awesome how God has used this little church in Minneapolis.  I may not be the best "salesperson" but I hope you will come and visit sometime.  You'll be glad you did.

The Quiet Spirit

If there is anything that I've learned over the last two years as the Associate Pastor is how to be on the lookout for the Holy Spirit moving.  I've learned to try to not be so invested in plans and theories and just watch how God works through the people in this congregation.

It's been cool to see how the Spirit has been moving in a church that so many think is out of energy and spent.  I've seen the Spirit in little kids, young parents and elderly grandmothers.  I've seen the Spirit in a Sunday School class with three little kids, a Wednesday night bible study where two 60-something women learn the Bible anew, a  from an 80-something woman who decided to start a new ministry.

I was reminded of how the Holy Spirit works in a recent blog post I found at the Christian Century.  Written by Steve Wooley, a retired Episcopal priest who goes by the name Country Parson, he writes about the endurance of small, rural congregations.  The last paragraph of this post could also apply to small, urban congregations as well:

It requires an openness to a subtle indwelling of the Holy Spirit. By subtle presence I mean an atmosphere of the Spirit’s presence, unseen and unheard, yet there. I don’t think you can make that happen whether by loud proclamation or through sophisticated consulting. A small rural congregation without that subtle presence may indeed be declining and dying, and we have all seen that happen. One with that subtle presence will probably continue from generation to generation as long as there are generations to be had.

Wooley is saying that what sustains a congregation, what makes it grow (not simply in numbers, but in faith) is that indwelling of the Spirit.  But the thing is, it doesn't happen in a loud way.  It doesn't happen in a way that anyone can see.  It also doesn't happen because of a special method that some transformation consultant is selling.  It happens in quiet and unbecoming ways that are not easy to see, but if someone has a heart that is willing, will see the Spirit and a glimpse of the kingdom of God.

I know that Wooley was talking about rural congregations, but I can see how this could apply to congregations like First Christian.  I've had to learn to put aside expectations for big numbers and just let the Spirit work and I have seen it work.

I think sometimes we can get so wrapped up in numbers, so wanting to find some program or path to change that will make the church what it once was, that we forget God.  In doing that, we miss out on the wonderful journey of God and we miss seeing how God's Spirit is still powering the church after all these years.

The gathered community called church is alive with the Spirit, if we have eyes to see and ears to hear.

Too Much Information

One of the things I've discovered since my Aspergers diagnosis a few years ago is that I have sensory overload.  I know that shouldn't be a shock to anyone that has an autistic disorder  or for someone who knows someone on the spectrum, but there it is.  I see it most often on Sundays after church, but it makes itself known at other times as well.

On Sundays, I will come home and have to take a nap, even on Sundays when I don't preach, which is most Sundays since the Senior Pastor does most of the preaching.  I know other pastors that will chime in and say "me too!" when it comes to preaching.  But while it might be the same, it's a bit different for me. Maybe the best way to describe this is that I feel at times like a laptop that runs on it battery far too long.  After a while, the battery starts to cause the laptop to get hot and soon thereafter, the battery is out of juice.  My brain is sorta like that.  I run low and I need to "plug-in" after worship.

Being pastor, even part-time is a very people-intensive job.  You are constantly dealing with people who want to talk to you about anything and everything.  Then there is the constant worrying that you'll say the right thing during worship or properly greet someone after worship.  Pastors also have to engage in a bit of small talk with their flock and always greet the new folks.

This is draining for neurotypical folks, but it is just deadly for those of us with Aspergers.  The battery is run down to nothing. I come home on Sunday afternoon not as much needing a nap, as needing time with no people to interact with- at least for an hour or so.

Seeing all of this might make one wonder why I'm even a pastor.  I've wondered that myself at times.  But I think that as much as this position can tax my senses, I've learned better people skills and at the very lear, I've learned how to "act human."  Plus, I've learned so much about the people I worship with that it can make some of this all worthwhile.

But this all means that I have to learn my limits.  I have to learn to get away when my brain gets overloaded (or overheated, if I use the laptop analogy).  It means, I can't always give 100 percent when it comes to something people-intensive, but I try to give at least 90 percent. 

Life is a balance: learning to appreciate you limitations and allowing yourself to be stretched as well.  This all reminds me just how complex my life truly is.