Tag Archives: autism

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.

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.

What I think I know about autism.

It’s autism awareness month. I want to be more aware.

So I decided to start by listing everything I think I know. That way, when I learn more, I can see what I have learned.  Please note that these are what I think I know, rather than anything I have evidence for. Yet.

1. It’s a neurological thing

2. It’s environmental somehow.

3. Can’t directly diagnose, have to work from symptoms.

4. Can’t cure, have to accommodate.

5. More cases are showing up. But I don’t know if it’s because more are being diagnosed or more are happening.

6. Therapy is a conditioning thing

7. It’s somehow related to Dustin Hoffman in “Rainman”

8. Not an IQ issue.

9. Not genetic.

10. Often invisible to people looking.

11. Often involves repeated motions.

12. Doesn’t usually result in institutionalization.

13. Can’t just snap out of it, but can seem to snap into it.

14. Lack of awareness by other people adds to the frustration parents already feel.

15. There are a bunch of related conditions.

16. I don’t know what to call autism.

17. I have friends for whom autism isn’t an abstract concept.

So, if you don’t have personal contact with autism, what do you think you know about autism? Don’t look it up. Just leave a comment.

And, you may want to get this window into what autism looks like.

Depending on old information

I spent the winter of 1978 sleeping. Not the whole winter. Just big parts of 75 minutes in the afternoon in Blanchard Hall. I was in class.

I took Child and Adolescent Psychology because I thought I needed a psych course and it sounded more interesting (and less invasive) than General Psychology. I think Jean Rupp was the professor. I think the class was on third floor Blanchard. I’m not sure because I slept in class, sitting in the back, next to the warm, sleep-inducing heating pipe.

I remember little. I do remember writing a paper on autism, a paper in which I was intrigued by the effects of autism, a sense of being overwhelmed by sensory input. Or that’s what I think I remember from the paper about autism.

I’m dragging you down this potholed lane of my memory to make a confession.

Based on that paper in college, the content of which I little remember, from a class I little remember, I act as if I understand autism. I smile and nod sympathetically when it is mentioned, as if I know that 1 in 110 children is affected by autism. But I am basing my pretended awareness on having looked at the subject for an assignment more than 30 years ago.

I’m guessing that we do that a lot. We think we understand something based on a brief experience years ago. Often, we don’t go beyond that. This time I want to.  April is Autism Awareness month. I’m going to increase my awareness. If you keep coming here, you are too.

Starting next week.