One of my high school philosophy teachers (at a Jesuit high school here in St. Louis) used popular music of the time (70’s and early 80’s) as a tool in classes. I mostly remember using Supertramp (Crime of the Century) and some Pink Floyd (“Welcome to the Machine” was a favorite). No surprise, then, that this habit continues to today. Check out the pop-culture label at 29 Marbles for some of my earlier posts using pop-culture as the starting point.

I’ve been a Pink Floyd fan for a long time, and like any true Pink Floyd fan count The Dark Side of the Moon among my favorite albums, by anyone, of all time. The song “Time” is an excellent reflection of the fleeting nature of our time in this world. The second verse includes the following lyrics:

You are young and life is long and there is time to kill today
And then one day you find ten years have got behind you
No one told you when to run, you missed the starting gun.

In the documentary, Roger Waters talks about a teenage conversation with his mother and the realization that it was time for him to start living his own life, that the “starting gun” had fired. One of the most important jobs a parent has is preparing kids for life on their own (however you may define that), a life that they are in control of (to the extent that anyone is control of their own lives).

There is a somewhat well defined path that we typically, though not always, can follow with our normal (in the statistical sense) kids. And many of us have come up with our own ways of preparing our kids for what lies beyond childhood.

But how do we let our kids, especially our autistic kids, know that the starting gun has fired?

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Driving yesterday evening, I passed a bus stop with a United Way advertisement with the slogan, “Autism is a trait, not a debilitation.” Obviously, when I made my way back online, I tried to find out a bit more about this United Way Campaign.

Through Google, I found a link to the campaign on the United Way website. Unfortunately, when I tried the link I received a 404 error. Hopefully it comes back up soon.

There was also a link to a story in the Belleville (Illinois) News-Democrat about the spokesman of the campaign, Tyrin Rencher (pictured at right).

He is on posters, pamphlets and television screens all around the St. Louis region as one of the many faces of the United Way fundraising campaign this season.

Most people probably recognize Tyrin Rencher as the smiling young man in a red apron standing in the kitchen at Pasta Fare in Fairview Heights beneath the slogan: “Autism is a trait, not a debilitation.”

Rencher, 27, of East St. Louis, has autism. He was diagnosed with autism at 2 1/2 years old and was enrolled in the Illinois Center for Autism in Fairview Heights when he was 3. He still receives services through the organization and was selected as a spokesman for the United Way campaign this year and as a spokesman for the Illinois Center for Autism.

He is currently a junior at the University of Missouri St. Louis, where he is working toward a degree in business administration.

When talking to Rencher, a person quickly learns that he’s a man determined to fulfill his dreams, in spite of the autism, and he is an example of the slogan over his head on the United Way posters.

“A lot of the stuff I planned is coming true and I’m speechless that it is all happening,” he said. “I want to open up a restaurant with my degree. Something small, like (Pasta Fare.)”

He is thankful the Illinois Center of Autism was around when he was diagnosed when he was a toddler.

“Without them, I would be lost,” he said. “I really wouldn’t be in a position to go to college right now.”

He is learning to live on his own for the first time, something that he sometimes finds difficult.

“But I’m learning, it’s tough, but I’m trying to adjust to living on my own,” Rencher said. “One of the things my family has taught me is perseverance, and I do that every day.”

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As I mentioned in my last post, I am currently reading Steven Pinker’s latest, The Stuff of Thought, an interesting (so far) exploration of the role language plays in human nature. In preparing to make an argument at one point, he starts off by saying the following:

To truly understand what something is you must understand what it is not. (His emphasis.)

What autism is not:

• Devastation


• Train Wreck


• End of the world


• Caused by mercury poisoning


• Purely environmental


• Purely genetic


• Caused by MMR (or any vaccine)


• A curse


• Punishment from God (whichever one may be yours)


• A disease that can be cured


• Easy to live with


• Easy to explain to friends and family


• Easy to explain to siblings of autistic child


• Easy to explain to the autistic child


• A reason to kill your child

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Earlier this summer I read Douglas Hofstadter’s new book, I Am a Strange Loop. As Hofstadter mentions early in the book, a more appropriate title would have been “I” is a Strange Loop; the book is about the nature of consciousness, that elusive concept of “I”, and not an autobiographical work as the actual name of the book suggests.

Hofstadter’s works have been among my favorites since I read his first book, Gödel Escher Bach: An Eternal Golden Braid, in high school. The new book is, in fact, an updating of the ideas he first expressed in GEB. I have long hoped that he might address issues of the mind and consciousness in terms of atypical minds (such as autism), but aside from some passing discussion of those minds, I Am a Strange Loop does not provide any real insight into how the concept of “I” fits with autism.

On Monday, I was pleased to find a paper that specifically addresses the question of autism and “I”, Self-Referential Cognition and Empathy in Autism, co-authored by Michael V. Lombardo, Jennifer L. Barnes, Sally J. Wheelwright, and Simon Baron-Cohen. From the paper’s abstract:

Background. Individuals with autism spectrum conditions (ASC) have profound impairments in the interpersonal social domain, but it is unclear if individuals with ASC also have impairments in the intrapersonal self-referential domain. We aimed to evaluate across several well validated measures in both domains, whether both self-referential cognition and empathy are impaired in ASC and whether these two domains are related to each other.

Conclusions/Significance. We conclude that individuals with ASC have broad impairments in both self-referential cognition and empathy. These two domains are also intrinsically linked and support predictions made by simulation theory. Our results also highlight a specific dysfunction in ASC within cortical midlines structures of the brain such as the medial prefrontal cortex.

My first time through I Am a Strange Loop was to soak in the big concepts. I typically wait a few months before re-reading something like this so I can get into the details, but I think I’ll start again sooner than that. (At the moment, I’m reading Steven Pinker’s latest book The Stuff of Thought.) Now that I have a bit more information about autism and “I”, I’ll have a better context for processing what I read.

Another interesting note about the paper, it was originally published by the Public Library of Science under a Creative Commons license. The PLoS home page describes it as a “A new way of communicating peer-reviewed science and medicine”, so I will assume the paper has been appropriately peer reviewed. But I think I will do a bit more checking just to be sure. (Of course, any insight from readers here would be greatly appreciated.)

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Just over 2 1/2 years (and just over 200 posts) ago, I started an autism related blog called 29 Marbles. Writing that blog helped me better understand not only autism, but my thoughts and feelings about autism. As I’ve come to better understand these things, I’ve found that I’m writing less and less. I was considering just stopping, but like Kev I just couldn’t bear the thought. I was very happy to take Kev up on his offer of participating in an autism team blog.

The “c” word – cure – was back in my mind this week thanks to Kristina Chew’s post The Cure Question earlier this week. By way of introduction (for those who don’t know me), I thought it might be good to give you my thoughts on this question.  (This is an update of an earlier post on 29 Marbles.)

= = = =

In any discussion about autism, especially with parents of newly diagnosed children or friends/family who have no direct experience with autism, the subjects of cure and prevention will inevitably come up. “Can you fix him?” “What went wrong?” “I’m trying to get pregnant, is there anything I can do to make sure my kid isn’t autistic?”

The answers to these questions depend quite a bit on whom you ask, and also when you ask them. In one of my early posts to 29 Marbles, I wrote the following:

“We can give your child a shot now, and when he wakes up tomorrow he will no longer be autistic. Would you like us to give him the shot?”

Pose this question to a group of parents of children just diagnosed with autism, and chances are you would get a very quick, passionate, and nearly unanimous response of YES Ask this question to those parents of older children, though, and the responses would likely be more hesitant, not quite as passionate, and definitely not unanimous.

When Bud was initially diagnosed, I viewed autism as “other” – an interloper, a roadblock, an obstacle. I saw it as something to take care of and to get rid of as quickly and as efficiently as possible.

Later, I began to see autism as a part of Bud (and not apart from him). I saw it as a small part, but a significant part.

But as I came to understand Bud better, I learned that his autism is not…one small part of him. It infuses every part of him and it shapes who he is in this world. It makes some things terribly difficult for him. It makes other things laughably easy.

If you had asked me the question 13 years ago, I would have had to decide. Not knowing then what I know now, I have no doubt that I would have quickly and unreservedly said, “Yes.” But if I had known then what I know now, what would my answer have been?

pregnant pause

In many ways, asking the cure question at the initial diagnosis (assuming it was early enough) is the same as ‘preventing’ autism in the child; if the autism is removed before it has a chance to “infuse every part of him and it shapes who he is in this world,” then the autism will have been prevented from being a defining part of the child. Is prevention a ‘bad’ thing? Again, it depends on whom you ask.

If you are talking about pre-natal testing, the discussion will range from “with this test you can determine if your child will be autistic or not and decide whether or not you want to have him” to “this is the first step to eugenics and wiping out of autistics.” I’m choosing not to engage in this discussion in this post, though I’m sure it will come up in the comments and in later posts.

If, however, you are talking about prevention through a “shot” like I mentioned above (I know, I know, this is not the way it would probably work – please bear with me), how would you answer the question. What factors would you consider?

I can’t help but go back to the questions in my mind that prompted me to write To hear or not to hear. What do I want life for my son to be like? What options do I want him to have? What will he think of my decision when he gets old enough to understand what I have done?

If I had a child who was born deaf and I was told by the doctors that through surgery my child would be able to hear, but the longer I waited the harder it would be for my child to transition from a non-hearing world to a hearing world, I must admit that I wouldn’t hesitate any longer than it took me to figure out how to pay for it. Why should I think any differently about autism?

By saying I would prevent autism at an early age if I could, I’m not saying that I don’t value my child as he is now. I can’t imagine these past 15 years without him (or his autism), and it is safe to say that my career path, my wife’s career path, and my other son’s life would be completely different had we not lived in Autismland all this time. But at the same time, I have no doubt that life without autism would have been just as enjoyable and rewarding, yet filled with the more ‘typical’ challenges that parents of teenage boys experience.

Parenting is hard, mainly because it is a long-term investment of time and effort (and money, of course) with a high degree of uncertainty about the final outcome. The things I do today will have impacts years from now that I could never imagine. I see one of main roles as a parent as the one who sets the path along which my children will begin their journey in life. Along with that, it is my job to help them understand the path they are on, the future paths that lie before them, and an understanding of how to navigate the world.

Or, as MOM-NOS says in (R)evolutionary parenting:

I will try to help him build the foundations that will serve him best [as an autistic person in a largely neurotypical world] – foundations of relationship, flexible thinking, broadband communication, mindfulness. And then, ultimately, I will need to step aside and let him use the things he’s learned.

Or not use them.

My goal, I suppose, is to help Bud have options, to let him know that his life need not be driven by fear and limitations, nor by the prejudices of small-minded people.

In the end, parents answer only to themselves (obvious legal/moral exceptions aside) and, when they get older, their children. I’ll leave it to them to judge.

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