Bill Long 10/3/06
The Dilemma for Parents
Of all the people I admire in the world, highest on my list are parents of children with autistic spectrum disorders. The range and difficulty of issues they face, from installing inside locks on almost every door of the house, to having to exercise constant vigiliance lest their child do something socially inappropriate, dangerous or even criminal, are such as to exhaust the most hardy and committed parent. But still they must live with their autistic child or children, often even mortaging their homes in order to try to secure care or treatment for this mysterious disorder.
By now our society is gradually waking up to the burgeoning number of children being diagnosed with autistic spectrum disorders. While three decades ago not more than 4 in 10,000 people were diagnosed with autism, now the Center for Disease Control in Atlanta says that 1 out of 166 children has some kind of autistic spectrum disorder. Debate rages over whether this massive increase is the result of an expanded diagnostic category (for example, diagnosticians now include a range of autistic-like symptoms as evidence of being on the "spectrum, while 30 years ago the definition was quite narrow), greater physician awareness of the disorder or, in contrast, whether we are in fact in the midst of an autism "epidemic." I am not prepared to enter further into this debate. The hard and enervating reality of autism is in our midst, however, and no one is quite sure what to do about it.
Now that my children are mostly grown (I say "mostly," because they seem to make it home for greater or lesser periods of time even though they have finished high school), I have a lot more time to observe other families "in action." Tonight while shopping I observed what you might consider a "typical" young family. Mom and dad were in their late 20s, and "junior," an infant of about six months, was quietly sleeping in his seat in the basket. But as the parents bagged the groceries I noted a distinct weariness in both of them. The wife forced a wan smile when the checker asked her how old her baby was; the husband seemed grimly resigned to trying to fit all the groceries in the basket without disturbing the baby. Both looked as if they could use a series of long nights' sleep...and this at 8:00 p.m. on a Tuesday night.
Then I thought to myself of a recent conversation I had with two acquaintances in the Portland area. Tom and Mary (not their real names) are a highly educated and accomplished couple in their mid-40s with not one, but two autistic children--14 year-old male twins. They are both blessed with enormous energy, drive, commitment to each other and to the task of trying to raise their family (they also have two "neurotypical" children--the name for "normal" kids in the autistic community). As I talked with them to learn more of the realities of raising autistic children, Tom looked at me and said, "Bill, you cannot believe how all-consuming it is to try to raise these children. The one thing parents of children with autism need, almost more than anything else, is respite. When he said the word "respite," his shoulders hunched forward, as if he was trying to feel the very thing he said parents most needed. His wife then looked at me and said, "In a 'normal' family, if you have one parent and one disobedient child, you as a parent have them outnumbered. But, with autistic children it takes two of you for every one of them. Thus, our two autistic children outnumber us, even sometimes when we have our housekeeper working with us."
Tom and Mary were just trying to explain their "reality." And they have comparatively more resources to "deal" with their kids. than most parents with an autistic child. Though Tom is the "stay-at-home" parent (the twins are both in the public schools), they have hired educational consultants, doctors, counselors and childcare workers to help them take advantage of all their resources to help their twins. And, they are aware that they have two other children, whom they have a responsibility to raise, too, and not just let them "raise themselves" because of the demands of the twins.
A Story from Australia
It was in the context of seeing exhausted parents, both when the parents are outnumbered and when they outnumber their kids, that I read the following story, appearing today in Australian news. Well, the original story broke a few weeks ago. A Queensland couple had decided to give up their children to the state. Why? Well, here was the story from Sept. 19.
"A GOLD Coast couple are giving away their seven-year-old daughter.
Benowa couple Robert and Debbie Lachlan say they have reached 'breaking point' and can no longer care for their daughter, Emma, who suffers autism and needs constant supervision.
She is likely to be instutionalised.
Disability support agencies say hundreds of other Gold Coast families are also in crisis and that services for the disabled are woefully inadequate because of a State Government funding shortfall of $300 million.
Although Mr Lachlan said the family was financially secure, they had made the decision because they were unable to cope with the situation.
"This is a parent's worst nightmare," an emotional Mr Lachlan, a primary teacher at The Southport School, told The Gold Coast Bulletin yesterday.
"We love Emma, she's a beautiful child but the fact is we are at breaking point.
"This is not a stunt and it's not an easy thing to do. We have to give her up, she's going to become a ward of the state because we just can't go on.
"I'm a desperate man. I have nowhere left to turn. It's wrecking our family. Emma is only getting harder to control as she gets older and giving her up is the only choice I can see."
Mr Lachlan said Emma could not speak or learn how to behave or communicate as a result of her neuro-biological disorder.
She bangs walls and draws on them, runs away, does not obey instructions and needs constant supervision, he said."
Well, the follow-up story appeared today. Here it is:
"A GOLD Coast family who threatened to give up their autistic daughter to the state if they did not receive additional help are "coping a lot better" after being offered some respite care.
Two weeks ago Rob Lachlan and his family were suffering under the daily stress of constantly attending to their youngest seven-year-old daughter Emma.
He called for at least a day of respite each week to relieve the stress of providing the constant care.
He said the Government, through Disability Services Queensland, had provided little help and the family were stuck on a waiting list for an increased funding package.
But after two meetings with agency officials, the Lachlans' household contentment is slowly improving with an offer of respite for seven hours each Saturday."
Maybe there is a little lesson in this story for the American autism community. Parents need respite, and our efforts should be going into ways to make that possible. It won't "solve" things, but it might do wonders for those who are on the front lines: mom and/or dad.
Copyright © 2004-2007 William R. Long