I’ve always struggled a lot over what might seem very basic things. I always have but for most of my life I didn’t get it – I didn’t understand that it could just be part of the way my brain works and that I can’t force myself to be different. I think that’s what I used to do before – try to force myself to be the way I thought everyone was supposed to be. Now my attitude and approach are very different. I am aware of the every day struggles but I relax into it. I don’ t sit back passively but I don’t force myself either. It’s more like try to gently steer myself into another direction. And sometimes frankly I don’t even have the energy for that. For me this is a much more peaceful and sane way to live.
-the blogger called "autistica."
Of course, one can learn to minimize this. It's something I'm still learning to do. The above quote deals with executive function in kids, but let me tell ya, it's there in adults as well. And we have to learn how to control this scatteredness in the workplace if we want our jobs.
- emotional control – being able to manage emotions and control behavior
- response inhibition – the capacity to think before acting and choose an appropriate response
- flexibility – the ability to deal effectively with changes in plans, transitions, and obstacles
- working memory – being able to hold information in memory while performing complex tasks
- sustained attention – paying attention and staying on task despite distraction or fatigue
- planning/prioritization – knowing how to formulate a plan and what’s important/what’s not
- task initiation – the ability to begin tasks in an efficient and timely fashion
- time management - working within time limits or establishing a schedule to meet deadlines
- organization – the ability to create and maintain systems and keep track of information/materials
- goal-directed persistence – the capacity to set goals and follow them through to completion
- metacognition – self-awareness and self-monitoring skills
A recent op-ed by psychiatrist Paul Steinberg about Asperger's Syndrome is getting a lot of attention with in autism circles, most of it negative. Steinberg is a little wary of the Asperger diagnosis, saying that it is not "true" autism. He notes:
Considered to be at the high-functioning end of the autism spectrum, Asperger syndrome has become more loosely defined in the past 20 years, by both the mental health profession and by lay people, and in many instances is now synonymous with social and interpersonal disabilities. But people with social disabilities are not necessarily autistic, and giving them diagnoses on the autism spectrum often does a real disservice. An expert task force appointed by the American Psychiatric Association is now looking into the possibility of changing the way we diagnose Asperger. True autism reflects major problems with receptive language (the ability to comprehend sounds and words) and with expressive language. Pitch and tone of voice in autism are off-kilter. Language delays are common, and syntactic development is compromised; in addition, there can be repetitive motor movements.
For Steinberg, Aspergers or high-functioning autism is not really autism because, these folks can talk. For him classic autism is the version we have been most familiar with, the kid who can't talk or do much of anything except live in their own world. Language is the key factor that separate the "real" autism from the "fake" one. When talking about Aspergers, he sees people who can talk, but who have a "social disability" something that might be an issue, but is not autism.
Of course, I beg to differ. Steinberg uses a pretty narrow definition, limiting it to language and not to the larger issue that affects anyone of the spectrum, and that is communication problems. People who are autistic have issues communicating exactly to others. Some who are higher functioning might learn those skills later, but it is still not inate, which causes a whole bunch of issues for people.
What Steinberg is doing is that he is failing to separate the cultural phenomenon that is Aspergers from real, live people who have it. He talks about "South Park" and how some people are claiming this or that historical figure had Aspergers and sums up that clearly it has to be the illness du jour that people are dreaming up to make the odd somewhat fashionable.
But there's another side to all of this, the side that deals with real people. I've heard enough stories to know that a lot of folks with Aspergers are not fashionalble or cute, they are real people who live real lives and the face real struggles because of their autism.
And that includes me.
Before my diagnosis, I really wondered what was wrong with me, I stumbled in and out of jobs, and relationships with me were challenging. I'm not saying it's all roses and gumdrops now, but life has become a lot better knowing why I acted so oddly to others. I knew where my limits were and tried harder to smooth over the rough edges. Aspergers wasn't cute or trendy in my life; it was barrier and at times dragged me down. I'm not saying that it was all bad, but being even "a little autistic" means that you struggle with things that are so much more easier to others.
What Dr. Steinberg fails to note is that autism is a dail, a spectrum where some are "mildly affected" and others are "profoundly affected." It's a range, not a switch that turns on or off.
I wish that Dr. Steinberg would have spent time with some of us who do have Aspergers. Maybe he would see that we aren't trendy fashionistas faking autism, but real people, who really, really struggle in life, and who are glad to know we aren't crazy, we aren't alone and we can take what has limited us and use it make us soar.
To paraphrase what several people wrote: It's hard enough being black, let alone being black and different. I think that may well be true. I suspect some black Aspergians learned how to fit in - just as I did - because they were not offered the "gentler special needs accommodations" afforded to middle class white kids.
It is this second group that interests me. If it's true that a good many young black Aspergians manage to blend in, wouldn't the rest of us benefit from knowing how they did it? I think so. I suspect they learned many of the same techniques that I and other middle aged Aspergians had to figure out, because there was no Asperger diagnosis when we grew up and it was sink-or-swim in the social pool for us, with no special accommodation.
When I was a kid , I spent several years on the junior usher board at church. Of course, back in the 70s, neither I nor my parents knew I was autistic, but they knew things were a bit off with me.
Anyway, being an usher in the African American church is an artform. You wear certain uniforms and there were certain hand signals that you would use to indicate a certain need. When the time came for prayer, you were supposed to cross your arms over your chest and bow your head. I can remember the feeling of cocooning myself into this little ball and it felt good. Once I was in that position, I would start twisting or rocking my torso, to the left and then to right. Back and forth, back and forth. It felt good to me, but it must have looked damn weird to the people in the pews. I can distinctly remember one day being in my happy place and rocking back and forth until a pair of hands touched my shoulders indicating that it was time to stop. Looking back 30 years later, that was a vivid example of kid with autism in the church. I don't know if what the person did was correct or not, but I do wonder if people were disturbed at what I was doing. Now that I am a pastor and someone with autism, I have started to wonder how those with autism are treated in the church. In talking with a good friend who has two children on the spectrum, I have found out that churches have a long way to go in welcoming people and families where one or more persons are on the spectrum. I stumbled upon this blog post by a special-ed teacher in Georgia, who shares the struggles he and his wife have faced when it comes to the church accomodating his son who is autistic:One would think that the safest place in the world for children with disabilities would be in houses of worship, among people dedicated to God, love, mercy, grace, compassion, faith, and forgiveness. But this is not true at all. The worship service itself, with constant demands for compliance and conformity, is hostile for those who are inherently different from everyone else. Anyone who is unable to conform to the structures of the service is not welcome and asked to leave. The larger the church, the more true this will be. I may editorialize more on my feelings toward church and those with disabilities later, but I want to talk a bit about how churches attempt to deal with this unique and growing population. In this particular church spoken about above, they attempted to recruit helpers in order to help Thomas participate in the same activities as his peers. I think the intent of the program was excellent, and it started out well enough. But without diligence by a committed coordinator, it becomes just another chore to dread like ushering, parking lot duty, being a greeter or assorted other mundane tasks and ministries in the church. Yes, we are the boy’s parents and he is our responsibility which we take seriously. But no one was caring much about our own spiritual growth or struggles. Staying home is a more Holy, peaceful and rejuvenating experience for many families that have children with disabilities. Church is often a hostile, hellish experience where families are segregated or ostracized. I don’t think Jesus would approve.
Ouch.
Sundays for a pastor can be long and grueling. For someone on the spectrum they can cause a meltdown or a shutdown.
Now, I have to say first off that I love being a pastor. I love being of service to God in this way. But having Aspergers means that I have limits to what I can do pastorally and some days, I get stretched to those limits.
Part of what stretches those limits include is having lots of facetime with folks. In the few hours I am at church, I spend a lot of time greeting folks and engaging in small talk (something I've had to learn over the years which I still don't get). Throw in an occasional meeting after church and I'm running towards home and a nap (decompression time).
I've been thinking what church can be for other persons on the spectrum and I have to think that it can be equally tiring if not moreso. Any type of religious gathering, be it in a mosque, synogogue or church is a communal event and that means meeting people. It's a lot of sensation that hits you in the face and can not only be draining, but probably overwhelming.
There's really no other point to this article except that when we think of persons with autism who go to church, we might want to be mindful of them as they try their best to worship with others.
If folks have been following me, you know that my political viewpoints tend to skew conservative/libertarian. So, at times I like to read things from conservative writers like Heather MacDonald. That said, what she wrote recently regarding a New York Times article on two autistic young adults trying to learn to be in a relationship is totally off the mark. I personally thought it was a great piece about these two persons who have communication issues learn to...communicate. For some reason, Ms. MacDonald could only see it was sloppy writings about sex that didn't warrant a front page article. Here's a little of her venom:
The feminization of journalism reached a new low this week with the New York Times’ front-page story on a sexual relationship between two teenagers with Asperger’s Syndrome. The article began:
The first night they slept entwined on his futon, Jack Robison, 19, who had since childhood thought of himself as “not like the other humans,” regarded Kirsten Lindsmith with undisguised tenderness.
. . .
So far they had only cuddled; Jack, who had dropped out of high school but was acing organic chemistry in continuing education classes, had hopes for something more. Yet when she smiled at him the next morning, her lips seeking his, he turned away.
“I don’t really like kissing,” he said.
Kirsten, 18, a college freshman, drew back. If he knew she was disappointed, he showed no sign.
It gets worse. Next up: the couple’s erotic proclivities, recounted in excruciating detail.
From the beginning, their physical relationship was governed by the peculiar ways their respective brains processed sensory messages. Like many people with autism, each had uncomfortable sensitivities to types of touch or texture, and they came in different combinations.
Jack recoiled when Kirsten tried to give him a back massage, pushing deeply with her palms.
“Pet me,” he said, showing her, his fingers grazing her skin. But Kirsten, who had always hated the feeling of light touch, shrank from his caress.
“Only deep pressure,” she showed him, hugging herself.
He tried to kiss her, but it was hard for her to enjoy it, so obvious was his aversion. To him, kissing felt like what it was, he told her: mashing your face against someone else’s. Neither did he like the sweaty feeling of hand-holding, a sensation that seemed to dominate all others whenever they tried it.
“I’m sorry,” he said helplessly.
They found ways to negotiate sex, none of them perfect. They kept trying.
Inexplicably, the Times fails to give us Jack and Kirsten’s favorite coital positions, or the details of their foreplay; such matters await in another article, no doubt.
The first thing that's wrong about this is Ms. MacDonald making this out to be an article about two persons with autism having sex. That's not what it's about. Where there is talk about sex its pretty brief, but MacDonald acts as if this was some kind of bawdy romance in the middle of the Times. When I read some of this, I was thinking about how different kinds of touch can bother me. That doesn't immediately mean I'm talking about me being naked with my partner. Persons, with autism have sensory issues and those happen when we are in love and when we are not, when we are clothed and when we are not.
My guess is that Ms. MacDonald doesn't really care about the intricacies of being an adult with autism. Reading the rest of her diabtribe, this article is simply the launching point for "what wrong with the world" which in her case is the "feminization of the New York Times." Whatever.
The Times is not always my favorite thing to read because it leans too far to the left in my view. But I also think they can do good stories and this is one of them. There are a lot of people like Jack and Kirsten, and myself who try to stumble through the complexities of dating on top of being autistic. That makes dating (and I'm not talking about knocking boots here) a challenge. Most people know how to "be" in a relationship, but for persons with autism this is not easy. That's what this article was trying to show, not what was someone's favorite coital position.
I can't say whether or not it was right for the Times to place the article on the front page. I can say bravo for writing it and publishing it. I only wish Ms. MacDonald would have spent more time getting to know those of us with autism instead of brushing us off.
The New York Times has a great post in its ongoing series about young adults with autism about a young couple where both partners have Aspergers. The article focuses on Jack Robison and his girlfriend Kirsten Lindsmith as they try to navigate the ups and downs of having a relationship and being autistic. Jack is the son of John Elder Robison, who has written two great books on being a person with Aspergers. (To keep the name association going, Jack's uncle is one of my favorite writers, Augusten Burroughs.) The article is interesting because of the thoughts and feelings it brought up in me when it comes to dating and now, marriage. Part of my issues with dating were because I never really dated much before my late 20s. A lot of that was dealing with my own sexuality which slowed things down. When I finally came out in my late 20s I then started dating regularly, and that's when the fireworks began. A few years ago, as I was trying to determine if I had Aspergers, I asked my friend Erik to write something about it. Erik was my first boyfriend and this is part of what he wrote:
Dennis and I dated for two years and I found it both enjoyable and frustrating. Enjoyable because he is a good person; frustrating because he didn’t seem to “read signals” very well, if at all. For a while I thought this was because I am the youngest child in my family and therefore had gotten used to everyone figuring out what I wanted and liked. Looking back now, though, “reading” me was apparently not difficult for the others I had dated before Dennis and those I’ve dated since. There were times when Dennis would be absorbed for hours in his computer screen as I sat across the room thinking that at some point he would come sit by me—that did not happen unless I verbally asked for it. There were times when Dennis would put a CD on and it would play three times through, and would have gone more times had I not objected.
And it got better after that. The worst was dealing with flirting. I didn't get it. I still don't. I could see how others did it with ease. But it never made sense to me to make small talk, let alone talk that is all about puffing up the other person. Add to that, I could never really "read" folks at all. I didn't know that people were communicating to me in ways that didn't involve talking. I stayed in my little world, not knowing how to really talk to people. I seemed to stumble along and finally in 2005 met a guy who seemed to like me in all my strangeness. Not that it has been a cakewalk there. Daniel is still at times amazed by my oddball behavior, but it seems to be working for now. What I do know is that even with all the problems, I'm glad for dating and being a relationship. It's from these encounters with others that I learn a little bit better what it means to be human.
I've recently noticed something about myself in relation to my having Aspergers. I tend to be someone that can be doggedly persistent about something. Where as others can be focused on something for a while and then give up, I tend to persist...and persist.
For example, whenever I've been without work, I've been dillegent in looking for work. I'm basically running like clockwork.At church, I've noticed that others don't tend to have much hope the church will continue. Even though there are those that I think want change, because others tend to not be that interested in changing there is a sense that there is no hope and that we should just learn to die well. Now, they could just be realistic. However, in my view, I tend to think that if there are some people that want change, then you just keep at it and ignore those who don't want to change.In the whole conversation, I've been the one that seems to be the one that wants to damn all the naysayers and keep trying. I want to believe that God is not done with First Christian and that if we are just open to what God is saying, a miracle will happen. Even the Senior Pastor based on the evidence is not hopeful the church will survive.Maybe they are all correct and I'm all wet. When I was leading Community of Grace, I held on to that project with all my stregnth. I did finally give up and closed the ministry, but I still look back and think I didn't try hard enough.I'm hardly an Pollyana. But I think because my Aspie brain is so focused, I can't really see other options. Of course that can be a bad thing. Sometimes you have to see other options and understand that what we want and hope for might not come true. But I also think it has a good side. As I journey within mainline Protestantism, I tend to see a lot of what I would call defeatism. We look backward at the past and long for the "good 'ol days" when the pews were full. We look at our small flock and think there is no hope.But what if the church saw things like someone with Aspergers? What if we were single-focused on doing God's will in our particular setting? What if we believed all those stories told to us about how God took all those "uncool" people like Gideon and performed a mighty deed? My brain is wired in a way that I'm a doer. I might not be the best person socially, but I can do the work required. I really do believe with faith in God and hard work, there are still good days ahead for First Christian. Maybe I'm an idiot, but I don't think God is done with First Christian in Minneapolis. I have to believe that God is just waiting for us to know that we still have much to give to the service of God's kingdom.I think we can, I think we can...
