Judge Not Lest Ye Be Judged

In Why Can't We Face the Truth? in the January 15th Daily Mail, Carol Sarler describes the more than harried life of her friends Cath and John and their autistic son, Tom. According to Sarler, both parents are unable to work full-time to take care of Tom and attempts to educate him at special schools have not been successful; if it weren't for Cath's mother, Helen, they'd have no one to babysit Tom who, as he gets older is "getting worse." Sarler writes of "brave and devoted mothers" like Charlotte Moore who "have clung to the positives brought into their lives by their children. But when she gave Cath and Tom George and Sam, Moore's book, "they simply could not see Tom in George and Sam."

Sarler's article is written in response to the recent speculation about a prenatal test for autism, in the wake of new research under Simon Baron-Cohen (research which was not about, or intended to be about, a prenatal test). Based on her assessment of Cath's, John's, and Tom's lives---or rather, as she seems to see it, the wreck of their lives----Sarler concludes:

......... looking on, as a relatively dispassionate observer; looking at the damage done, the absence of hope and the anguish of the poor child himself, do I think that everyone concerned would have been better off if Tom's had been a life unlived?

Unequivocally, yes.

What to make of this account?

First, as I think has been noted, I seek too to "cling" (if you want to use that word) to those "positives" brought into my life by my son Charlie.

"Acceptance is the beginning of hope" I said on in a special on neurodiversity and autism rights on Good Morning America back in June. But wasn't all this talk of acceptance just "a beautiful way of justifying heartbreak," a consternated Diane Sawyer asked at the end.

I can assure you, everything Sarler says about Tom's life, and Cath's and John's, we've been through. I'm not going into all the messy details, as they are quite clearly described in Sarler's article some of it just in the past few week since Charlie started to have trouble, serious trouble at times, and, really, Jim and I have never had to hang onto him so tightly. With a lot of attentiveness, a change in medication, the hard work of teaching, and just a lot of love, things have been much better for the past week, with Charlie himself seeming to do as much as he can, too.

Yes, there's been "damage done," even an "absence of hope" and a lot of, what can I call it, dark night of the soul sort of despair that maybe Jim and I had reached the end of the road we promised Charlie and ourselves that we'd always walk together. Charlie has been going through a lot in these past few months, the massive changes occasioned by puberty and the realities of his growing up. I have been beyond grateful for everything I've been learning about policy and services and community inclusion for adults on the autism spectrum---these make me hopeful and these are the things I know we need to focus on and work for, on doing what we can to help those on the autism spectrum have good lives.

But judging that some children's, some people's lives, would have been best left "unlived"?

This is Sarler's judgment from the outside, as she herself notes. What Cath and John, her friends, think about this matter is not noted. Perhaps Sarler did not wish to include this information in her piece. But her assessment of her friends' lives makes me keenly aware of how others who don't live with Charlie, who don't know Charlie, might be judging Jim's and my life. Do people think it's a life of one tantrum, one catastrophe, after another, with a child, a child growing up too fast, and unable to communicate a single thing---excuse the expression, a tall young man who's a "perpetual toddler" inside?

Such impressions of life with an individual on the autism spectrum only persist, and exist, as long as that is all that we hear. There's little positive said about Tom in Sarler's article other than a (somewhat stereotpyical) reference to his being an "amazingly beautiful child (they often are)." And it is possible for me to write about the tough things and that's part of a day (of anyone's day; who has great days all the time?), but really, life with Charlie is not only good and full and rich and packed. It's fun----piggy-backing Charlie in the pool per his request on Sunday afternoon (yes, I mean I was piggy-backing Charlie) inbetween him swimming half-laps and splashing water into the bleachers and my contacts with his kick; the three of us run-rushing down a street down by the Jersey City waterfront with a cold wet wind blowing on us, on our way to the kind of diner that just makes you think of that last episode of The Sopranos.

Yes, when Charlie's very upset and the anxiety is working its way through all of his body, it's been hard to hold him. But how much better to have him to hold and to love, than the empty alternative, a life without our son, Charlie.