The most devastating thing

Here are some quotes from two recent media stories, from two sets of parents, about their children:

First set:
"I try not to dwell on it ... I try not to look at my kids like they're sick. I know they have a problem but I try not to look at them that way. I try not to treat them any different than any mother treats her children."

Second set:
"I started crying and I was just sobbing because I thought there wasn't anything I could do about it... The child you thought you were going to have really dies when you find that out. You've got to become acclimated and accepting of the fact that that person is gone... it was the most devastating thing you could imagine... The public needs to get it that this is a common, expensive and devastating disease that needs the full attention of society."

Well, it's not hard to spot the second set of parents as having an autistic child. The media story is about these parents' "anguish". Here's how their devastating autistic child is described:

Jon likes activities such as rollerblading, swimming and, most recently, riding his new bike. Jon, who has three older sisters, also loves to read. "He seems to read better than he talks... It comes easy to him, so we're trying to run with it."

The first set of parents don't have autistic children, though at one point, one of their children received an autism diagnosis, which turned out to be incorrect. Here is how their non-autistic children are described:

Five-year-old Jamie and two-and-a-half-year-old Carson have Batten disease, a fatal, inherited nervous system disorder that causes the brain to shrink and shut down over time, eventually robbing its young victims of their speech, sight and motor abilities. There is no known cure or prevention for it... Jamie can't speak, see or move much on her own anymore. She has to be fed through a tube and carried wherever she needs to go. Although still sighted and mobile, Carson has lost the few words he had picked up, including "mom."

This story finishes with a short, accurate (so far as I can tell) section of information about Batten's, including that children don't live longer than 8-12 years, 20 at the outside.

In Canada there are autism advocates, including political leaders, who claim there is no worse nightmare for any parent, nothing more devastating, no worse anguish, than to have an autistic child. They also claim that autism is the most severe of all neurological disorders, that is, it is worse than fatal childhood neurological disorders like Batten's. This distortion of reality accurately reflects how they see autistic lives.

Jaime and Carson's parents have been through a lot. Their first child died at one month. Their two other children have a fatal condition. The only treatment offered that might prevent them from dying is very experimental, unproven, expensive, and dangerous. Here is the only statement alluding to the care required for these children, neither of whom speaks, one of whom has no self-care abilities at all:

Keeping's Aunt Suzy and two home care workers help out with Jamie's and Carson's care.

I don't know where the calm, dignity and grace shown by Jamie and Carson's parents comes from, but they provide a perspective that's completely missing from the hysteria surrounding the supposed autism crisis.