Monday, May 7, 2007

Mark Twain on Autism II: It's Personal

In my last post, I offered part one of a two-part interview with the amazing wordsmith, Mark Twain. What follows is part two:

Mr. Twain, I see that you have more than just a cursory familiarity with some of the science behind current knowledge of autism causation and treatment. But I would like to diverge from that topic for a while and discuss what autism is really all about. This is where your opinions as a wise and venerable ethicist and humanist are so valuable.
When I first learned that my oldest son was autistic, I was, well, crushed. I well remember the ensuing days of scrambling for answers, for understanding. I have been quoted as saying that I will always regret my initial response, in that I failed to understand that the diagnosis did not rob me of the "perfect" son, but instead that it had rewarded me with a son who is perfect - in his own ways. This realization has brought much joy and relief into what was a difficult situation.

Every man is a suffering-machine and a happiness-machine combined. The two
functions work together harmoniously, with a fine and delicate precision, on the
give-and-take principle. For every happiness turned out in the one department
the other stands ready to modify it with a sorrow or a pain--maybe a
dozen.

But I still must acknowledge my sorrow, as it were. Though I have come to learn otherwise, it was as real and intense a feeling as I have ever known.

Grief can take care of itself, but to get full value of a joy you must have
somebody to divide it with.

Yes, and that's exactly what happened. Not only my wife and I , but also my son's wonderful grandparents kind of banded together at the outset and determined that we would, no matter what, provide for his happiness. At the time, we weren't quite sure how to judge what form that happiness would take.

You cannot depend on your judgment when your imagination is out of
focus.

Thank you for iterating the problem so well. I, at that point, had no "imagination" as to what Jason's outcome might look like. And therefore I did not know how to approach it. So there we were, trying to connect with Jason, and poring over all available literature and pursuing the list of resources that had been given to us at Children's Hospital at the time of diagnosis. Wow, what a mental exercise it was to try to accommodate all of this new information.

When you fish for love, bait with your heart, not your brain.

With all due respect, that is easier said than done, Mr. Twain! But I see your point. And very soon, as we began to understand the nature of Jason's ways of interacting with the world - and how they differed from ours - we began to set aside our initial prejudices and see Jason for who he really was all along.

When we do not know a person--and also when we do--we have to judge his size by
the size and nature of his achievements, as compared with the achievements of
others in his special line of business--there is no other way.
His achievements were indeed noticeable and significant. We began to venture out with him more often, we learned to grow thick-skinned against the inevitable scorn that came from having a beautiful, physically healthy child who was apparently unruly and undisciplined to the unacquainted observer.

Each man is afraid of his neighbor's disapproval--a thing which, to the
general run of the human race, is more dreaded than wolves and death.

Yes, well, as any parent of a young autistic child will tell you - that is a hurdle which must soon be overcome if the parents are to fulfill their role of exposing their child to fun and interesting experiences in the community. And, with all due respect, I don't believe your statement holds true for all people, perhaps most especially autistic people who may not be as "honed in" on gaining the approval of their social contacts. At least in the case of my son, just spending some time by himself and pursuing a favorite hobby makes him, well...

...as happy as a dog with two tails.

Well said, though he probably won't express his happiness quite so emphatically. I still do worry about his future, though. Well, if the truth be known, I worry just as much about my other two boys, but in Jason's case the worries are more ... well ... targeted. Things such as bullying. Things like gaining a fulfilling job as an adult. Things like developing close friendships that will help him through the harder times in his life. Well, time will tell how each of these circumstances bear out, but we believe that if self-esteem and self-respect are in place, everything else is eminently possible. And that, therefore, will be the focus of our goals for our son.

We can secure other people's approval if we do right and try hard; but our
own is worth a hundred of it, and no way has been found out of securing
that.

I see you do understand what I mean by this, then. And also you see my ultimate challenge as a father to this great kid.
Well, Mr. Twain, as opposed to an interview, this seems to have turned into somewhat of a dad-therapy session. Thank you for offering your time-tested insights, and I would like to offer you the final word on this broad subject.

People are different. And it is the best way.




5 comments:

Ms. Clark said...

Nice. :-)

Another Voice said...

Well done Steve.

"When you fish for love, bait with your heart, not your brain."

You have learned to be open and wear your heart on your sleeve for all to see.

I hope that many parents find your site and reflect a little while.

mamamia said...

Ditto ms. clark and another voice, and blessed is the child who has parents like Jason and your other sons. God speed and good luck as the rest of your journey unfolds.

Anonymous said...

"People are different. And it is the best way."

Yup. And it seems like there is more diversity in more densely populated areas, though it may only be that it's more visible in our cities. As a result, cities can be much more interesting and have more to offer.

Estee Klar-Wolfond said...

"Grief can take care of itself, but to get full value of a joy you must have somebody to divide it with."

Absolutely.

From Joy of Autism.