Category Archives: april

5 questions with Mike – autism awareness month

A few weeks ago, Nancy and I had lunch with Sue and Greg.
That’s no big deal, I suppose, except for the fact that they live in Ottawa and were traveling fourteen hours to Indianapolis and stopping for lunch.
In the course of lunch, I asked them what they knew about autism. After the odd look, I explained that I was trying to learn about autism for Autism Awareness month. They answered what they knew and then said, “You need to talk with Mike.”
Sue introduced us. And I’m very grateful she did.
This is my “5 questions” interview with Sue and Greg’s friend Mike:

1. When you describe yourself, are you someone who is ____ or someone who has ______? Or is that a distinction that matters?
I describe myself as someone who “has Asperger’s”, and I think the distinction is very important.  When I was first diagnosed, I became very depressed.  I had always felt apart from the rest of the world, as if I was stranded in a different culture and though I couldn’t understand what was really going on, my only choice was to smile and try to fake it as best I could.  Being diagnosed seemed like a sentence of sorts.  “Don’t bother trying.  You’ll be this way forever, anyway.”
I talked to a friend of mine about it, and he pointed out that while Asperger’s most certainly accounts fro some of my personality quirks, so do my parents, my interests, and even my friends.  Saying ‘I am Autistic’ rather than ‘I have Autism’ implies that Autism is the whole of myself, the only thing worth knowing about me.  I have far more to offer someone than a condition.
2. Susan said that you were diagnosed as an adult. Does having a diagnosis feel like it created a barrier “Oh, you have ____.” or that it provided an open door “Finally, I understand what’s going on.”
A little of both.  Being diagnosed explained much of the problems I’ve had my entire life.  My awkwardness, my tendency to forget about people if I don’t see them regularly, and the like.  It was a bit of a load off at the time.  Most people’s first reaction to someone who does these things isn’t “He must be Autistic”.  It’s usually more along the lines of “He’s a jerk”.  Being diagnosed helped people, myself included, realize that it’s not always in my hands.  That said, I still have it, and it’s a struggle everyday to fit in.  I oftentimes have to mentally plan social situations to a level Batman would be proud of, and it can be exhausting.
3. Do you ever wish that you had known sooner? How would that have made your life different?
I wish that every day.  It would have definitely helped with many relationships, especially with girlfriends.  That, and jobs.  Turning the crazy level of focus I can muster in different directions than what I tended to focus on could have really helped in my early years.
4. Do you want to be an expert on Asperger’s or do you want to be an expert on you living your life doing lots of things, with Asperger’s being one of the things that is part of your life?
I want to be an expert on lots of things.  I want to be fluent in another language.  I want to know everything there is to know about quantum mechanics.  I want to get a black belt in a martial art.  I could really care less about the ins and outs of Asperger’s.  Knowing more about the condition doesn’t help me deal with it any more than being an oncologist helps you deal with having cancer.  Knowing that this is a condition, something that must be accepted and worked around, rather than something that can just be ‘trained’ out of me, is all the information that I really need.  The rest is just knowing what I have to do to mitigate my problems.  My wife is more into the different aspects of Autism, mainly in hopes of finding a cure.  I’ll stick with just being an expert on living my life.
5. As you look at other people living their lives, thinking themselves normal, complaining about not accomplishing anything, sitting watching TV all the time, is Asperger’s in any way an asset for you? (A very odd question, I know.)
Asperger’s can be a tremendous asset at times.  I like to think of it as being ‘min-maxed’.  For those who have never played a RPG, let me explain:  Say, you’re designing a car.  You have to take several factors into account, including comfort, speed, traction, and reliability.  You can balance those things, or you can build the worlds fastest car.  It might not be as comfortable, or a tight in the turns, but it’s the fastest thing on four wheels.  Normal street driving is out of the question, but that car can be very effective in a drag race.  That’s how I’m built.  I may not be the life of a party, but if you need something figured out, I can fix it faster than most in my position can.  I can muster a level of focus most can’t.  Don’t get me wrong.  I’m rarely happy that I have this condition.  It’s just that, thankfully, it can be rather useful in certain situations.
Thank you, Mike.
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awareness isn’t expertise, and needn’t be

autism societyIt’s Autism Awareness month. I’ve been planning to write about autism. The month is half over. I’ve written twice: once to say “I’m writing” and once to say “Here’s what I think I know.” The comments on those posts have taught more than the posts.

I have a list of related posts, germs of ideas, things I want to find out. But, it seems, other projects and responsibilities intrude. I can’t do the research that I would like to do be offer answers here, to have great insights.

I wanted, for example, to find out what it is like when autism is part of a family. What’s it like to be a mom, for example?

Katie Donahue Bevins answers those questions, writing as a poet.

I dragged Sean into the house, his voice screeching, saying over and over,

“I want a new Mommy!”

All I could think was, “Good luck with that. You’re stuck with the one you’ve got.”

From brothers.

Chantal Sicile-Kira answers those questions as an “author, speaker, autism expert:”

When he was little, it was very hard figuring out how to reach him, how to teach him basic skills. Nothing seemed to work for Jeremy as it did for other children with autism. I had to quit my work (in TV and film production) in order to teach him and to do physical therapy exercises with him every day.

To this day, although he has proven how smart he is, his motor skills and sensory processing challenges are such that he requires supports for many aspects of every day life. We are working on helping him become as independent as possible, by trying different therapies to work on motor skills and sensory processing.

from “Autism mom shares her knowledge”

Tammy Lesick, answers these questions by getting autism posts from people like Katie and Chantal on her site, “autismlearningfelt.com

I wanted to offer insight, that is, until I realized that awareness isn’t about being an expert, about having the most profound insights. Sometimes being aware is about stopping long enough to notice.

These moms are worth noticing.

local

I went to lunch with a friend last week. We met in a small town diner. We talked for two and a half hours, which means that at some point we went from lunch to afternoon break.

Our previous longest conversation was about 10 minutes, so this was fun. We were able to compare notes on our similar situations. He was able to help me understand how my place relates to his place. It was the ideal kind of real-time extended conversation. It was local.

The coffee mug was local, too. The form is classic diner, but the text on it is incredibly local. In fact, at least one of the ads shown doesn’t even have an area code for the phone number. If you wanted to order me flowers, you would have to make some inferences (not the least of which is, of course, that I would like flowers).

I’m struggling to understand how to be publicly local. To have real relationships with real people wherever they live.

Here’s why it is a challenge:

I living with a calling and desire to love my neighbor like I love myself. Our tendency is to sort through and limit who our neighbor is. We like to make the definition of neighbor conform as much as possible to the image in our mirror. And we like to make that circle pretty small. And, when that calling was first uttered, conversations were all geographically local.

But that small circle and geographic localness isn’t an option for me, somehow.  I mean, I’m wanting to understand how the fact that local extends around the world relates to the reality that neighbors can therefore extend around the world. I’m wanting to figure out how to not be committed only to people who are like me (or who like me). I’m wanting to figure out how to have long conversations when that is impossible.

I have no questions about the significance of interactions between people who never talk. We can, without ever exchanging voices, change each other’s lives.  Not just make money, not just make people smile or cry, but fundamentally change the direction and outcome of lives.

Which is the point of love.

Good people day.

Some people are picky eaters. They search a perfectly good bowl of taco meat for any trace of green peppers, for example. Any parent would be appalled by such behavior, right?

Unless, of course, the parent is thrilled by the good humor of the searchers, by their cooperation in the search, by their sense of humor in (almost) posing for the picture.

Gary Vaynerchuk is calling for today, April 3, to be Good People Day. He wants us to look for–and identify–good people around us. Sometimes finding goodness seems as hard as finding green peppers where none exist. But maybe, today, the point of the search is that we spend the time searching…and commenting…together.

I’m reflecting this month on loving God completely and loving my neighbor, and doing it as if I only had one month to live. What Gary is doing, for me at least, is inviting me to do what I ought to be doing. And in the process, while I’m looking for good, maybe I’ll see it where I wouldn’t expect it.

Maybe, it’s in the loving that the good shows up. Even in picky eaters.

pull up a chair

Heart aches are sometimes real.

I went to the hospital on Monday for a visit. A woman had felt chest pain and decided to follow up. So far, after tests, everything looks okay. However, medication was given which is part of everything being okay. Which means that everything wasn’t exactly okay.

I talked with her husband who had been sick a couple years ago. She finally talked him into going to the doctor. He had a problem which was much worse than expected. He was okay, but it took treatment.

I went to a funeral on Saturday for a friend who had been experiencing indigestion for several months. After she finally went to the doctor, she ended up with needing a bypass which came too late to help.

We want our aches to go away, to heal themselves. We think that there isn’t anything a doctor can do because we’ve tried doctors and they were all quacks. The problem is that sometimes there is something that actually needs to be worked on.

There are times that people don’t want to talk with me, or someone like me. There is an ache, a heart ache. They think that maybe it will go away, maybe it will heal itself, maybe it isn’t really there.  Or they think that there isn’t anything really inside, nothing that can really be addressed. (Or maybe that there isn’t really anything outside). And so, the chair stays empty, the coffee cup full.

Or sometimes, people talk with me like I talk with a doctor. Sometime I tell the doc what the symptoms are and then I take care of the diagnosis and then I decide what the prescription should be. And then I walk out.  And I’m feeling better because I can say I talked with the doctor, but nothing has changed. I haven’t taken anything…to heart.

But when I’m wanting to actually find out what is wrong,  I listen. I talk descriptively and then listen actively. I take the medication all the way to the end. I start walking. I pay attention to what I’m eating. Because I acknowledge to the doctor and to myself the possibility that there are things that I don’t understand, that I don’t know, that I’m not the expert on.

And sometimes it’s worth talking with someone who, though the words make no rational sense,  can suggest some answers for heart aches.

no fooling

I started the most challenging job of my life on April 1. It wasn’t the best job of my life. In fact, it taught me much about areas of weakness in my life. I haven’t resolved all of those areas, but I am, on average, less driven by career, more aware of the need for followthrough, more aware of my inability to make institutions change by sheer force of will or by weaseling. So maybe, like “take this medicine, it’s good for you”, it was one of the best jobs for my life.

I think that I may be in for another of those learning processes, though this time I’m doing it on purpose.

I’m going to try to live April as if I only have one month to live.

I haven’t received any bad news, any diagnosis, any warnings. My job isn’t on the line, my family isn’t sick, I have received no warning dreams or visions. I am not worried about turning fifty this summer. Our kids aren’t moving out any time soon. I haven’t heard about any comets or other cataclysmic events. I am not aware of any biblical prophesy that will be fulfilled by destruction of me or of my family or of our country or of the universe on April 30.

And yet.

What if, just for a month, I lived on purpose?

I’m reading 40 Days Living the Jesus Creed, a book where Scot McKnight reflects on the words that Jesus would have spoken morning and night, as emended BY Jesus (“Love the Lord your God with all your heart and all your soul and all your mind and all your strength and love your neighbor as yourself”). That statement can become a purpose statement. Yes, it is the summary of the commandments, but what if rather than doing it because we have to (“Okay, I’ll love my neighbor, but this better be worth it” “Who exactly counts as my neighbor … and who can I ignore”) we decided that it was a way to live?

So what if I decided to live for a month as my last, choosing to live the way Jesus lived his last month?
We’ll see.

(the Jesus Creed on the Jesus Creed blog is here)

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