Scoble on autism

Thursday 10 May 2007This is 16 years old. Be careful.

A week ago, Robert Scoble posted about autism, with his impressions of how it has affected Zoho CEO’s Sridhar Vembu attitude towards his business:

...when you face something like this in your personal life that life at work seems pretty easy, even when facing challenges that the rest of us would think are pretty scary.

I know where Vembu is coming from. I’m not a CEO of a 600-person company competing with Google and Microsoft, but I know that having a challenging home situation can put work problems into a different perspective. When you have a full-grown 17-year-old who can be unpredictably aggressive, the potential crap you can get from a bunch of business-casual guys around a conference room table just doesn’t seem like as big a deal.

The comments on Scoble’s post are an interesting read in and of themselves. In case you haven’t delved into the autism community lately, it is a complex place. Like any large group of people facing a difficult challenge, there are sub-communities and factions with opposing points of view. Believe it or not, here are some divisions in the community:

  • Not everyone agrees on why autism diagnoses are on the rise.
  • Not everyone agrees on what causes autism.
  • Not everyone thinks autism should be cured.
  • Not everyone thinks autism is bad.

To an outsider (such as Scoble), some of these points seem obvious (who would choose for their child to be autistic?), but the difficulty of autism is being faced by different people in different ways. In some cases, it is being faced by one family in different ways at different times depending on the day’s particular challenges. I know our family does.

If you read Scoble’s comments, you will see that these disagreements can become quite heated, as you would expect. If people can debate to the death about Ruby vs. Python, you can imagine what energy they will put into the problems of their disabled children. Some lingo to get you started: curebie and neurodiversity.

Personally, I don’t have much stomach for these intense debates. I’ve got enough to do with my aggressive son without also dealing with aggressive parents. We are all coping as best we can with autism, I wish them all well.


I also run a challenging business and have an autistic child at home - a very low functioning boy, but who fortunately is not aggressive or self injurious. Two thoughts:

- I am fortunate to have two normal children as well as my autistic son. This makes parenting much easier, as my wife and I have the opportunity to have a "normal" parenting experience along with the challenge of being parents of an autistic child. That means that our parenting efforts are rewarded with the expected results: kids who show love back, and develop on a normal trajectory. It removes some of the self-questioning that we would be experiencing if we didn't have normal kids, i.e. "is my child autistic because I am a bad parent?" My heart breaks for parents whose first child is autistic (and realize it before having another) - they face an agonizing decision as to whether to have more, often while overwhelmed with caring for the first child. I know another couple with three children, the first is Aspergers and the other two more severe. Those second and third children were a roll of the dice. If they had turned out OK then they would be in much better place, but as it turned out they now have a very difficult situation. In my case we started with twins - one autistic, the other not. So we had a "control" kid from the start, which made it much easier to cope with the situation. Our third child was an accident, and happily he is also normal. But we watched him like a hawk for the first two years, and any behavior that seemed autistic was very frightening.

- Running a business is challenging now matter how you cut it. In my case I use my autistic son to motivate me, as I know that I will need money to take care of my son in the future, and the more the better. I probably chose the wrong business when I started 25 years ago (furniture manufacturing) but I have come a lot farther than most, and I refuse to fail.

One last observation: once you are familiar with autism, you see it everywhere. There is a high proportion of autism in engineers and other technically oriented people (and probably a very low proportion amongs actors and theatre types) and many adults who are just considered odd would have been diagnosed if the same standards we use today had been in force 30 years ago. This is undoubtedly part of the rise in autism prevalance - I think it accounts for most of it.

Paul Downs
Paul's is an excellent point about how people often get scared off from having other children or have no sense of how their doing as parents depending on the birth order of their autistic child. So true. And incidentally, it was actually Paul and Nancy's wonderful attitude towards their third son that impelled me to want a third child, as well. They "watched him like a hawk," as Paul said, but they also were incredibly mellow and "we'll take whatever we get and be okay," in their attitude, which empowered me in terms of Benji. So thank you, Paul and Nancy!
Oh, and by the way, well-said, Neddy Sweets!
Great post, Ned.

I'm not a business leader in any way, but one of the kids in our family has anorexia which is also very challenging to deal with.

I do know that some stuff, like having a career and making a lot of money, are in the back burner due to the pressures of dealing with this eating disorder (more so for my wife than me, unfortunately). But on the other hand, you have to deal the hand that's dealt you.

Do I feel envious of parents with "normal" kids? Sure. But if we didn't have this situation I wouldn't be happier. Happiness is relative. If everyone was "normal", we'd worry about grades and drinking and drugs and stuff.

Taking care of your family is the important part.
This article might interest you on the BBC.

- B.

Add a comment:

Ignore this:
Leave this empty:
Name is required. Either email or web are required. Email won't be displayed and I won't spam you. Your web site won't be indexed by search engines.
Don't put anything here:
Leave this empty:
Comment text is Markdown.