Autism: A Mother Looks at Diagnosis
I realize I've gone on kind of at length about how easily I slipped into feeling offended at that time, but it's for a reason: I want to make it clear how incredibly fragile and wounded the diagnosis had left me.
The truth was, of course, that every friend and relative I spoke to was kind and sympathetic. They all offered help and support. I just couldn't see it, because I was one raw gaping wound, an exposed nerve, a total wreck.
You are, you know, when you get that diagnosis. You're a wreck. There's this huge thing in your life that wasn't there before. It sits there looking at you, and you try not to spend all your time thinking about it, but it just takes up too much space. You can't not think about it all the time.
The worst is in the middle of the night, when you lie awake wondering what the future holds for your kid. You want to be positive, but you just keep coming back to Dustin Hoffman in Rain Man, with his institutionalization and staccato speech and no social life and just this awful bleak nothing of a future.
Was that going to be my son? I'd never seen an adult with autism in real life. Was that because they all ended up in institutions? I honestly didn't know. Say Andrew did have to be institutionalized one day. Would we ever be able to save up enough money to keep him in a good institution for the rest of his life? Or would he end up in a snake pit, beaten and tortured and starved into some sort of brain-dead submission? What about his little newborn brother would he have to work hard his whole life to support his brother in an institution?
Which led, of course, to a far worse thought what if his baby brother had autism, too? Could I ever survive two diagnoses?
Middle-of-the-night anxieties, all of these, but sometimes the morning isn't all that much better, because you wake up and there's so much still to deal with: the therapies you have to drive to and have you chosen the right ones? the kids who say mean things at your son's school, the school parents who don't talk to you because your kid is weird and they think you're a bad parent, the baby you adore but never have any time to play with because your other kid needs so much of your attention....
Man, it's hard. If you're going through it now, you know how hard it is.
But know this, too:
It gets better.
Getting Better All the Time
Not long ago, when Andrew was ten, my husband and I went away overnight without the four kids, for the first time in ages. We stayed at a small hotel in Malibu, and as we walked along the beach that evening, we held hands and fantasized about retiring to a small cottage near the beach one day, just the two of us, when the kids were all grown up and on their own.
It was a nice dream. And hours later, it suddenly hit me we had stopped worrying about Andrew's future.
For years, any discussion about the future was tempered by the nagging fear that we might still have to take care of Andrew, that he might be living with us or, worse, in an expensive institution. But gradually, as Andrew's skills grew and he started to catch up to his peers in most areas, that concern slowly faded away. Somehow, the thought, "He'll probably need us to always take care of him" became "Of course he'll be an independent adult."
Admittedly, no one knows what the future holds, and it's possible that any one of our kids might still be living with us into his or her forties (hey, it happens). But the fear is gone, and the future looks pretty bright at the moment.
More on: Learning Differences
From Overcoming Autism by Lynn Kern Koegel, Ph.D. and Claire LaZebnik. Copyright ฉ 2004. Used by arrangement with Penguin Group (USA) Inc.
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