conuly

Autism's parent trap: When false hope can be fatal

In recent weeks, three stories have hit the news with grimly similar plot lines: parents accused of killing their autistic children.

On April 12, in Hull, England, Alison Davies and her son, Ryan, 12, fell to their deaths from a bridge over the River Humber, in an apparent murder-suicide. (A note was found in the Davies's kitchen.) On May 14, in Albany, Oregon, Christopher DeGroot, 19, was trapped inside a burning apartment. He died in a Portland hospital five days later, and his parents are charged with murder, accused of locking their son in the apartment alone. And on the same day, in Morton, Illinois, Dr. Karen McCarron admitted to the police that she had, the day before, suffocated her daughter, Katherine, 3, with a plastic garbage bag.

Family and friends have come to the defense of two of the parents involved. "Ryan was the focus and the purpose of her life," Alison Davies's sister told The Sunday Times, calling the double bridge jump "an act of love."

A friend of McCarron's - a fellow member of her local autism-support group - told a columnist for The Journal Star of Peoria, Illinois, that McCarron had devoted her life to Katherine. "She never took a night off," the friend said. "She read every book. She was trying so hard, pursuing every lead."

Chilling words to any parent of a child with autism who remembers, as I do, reading every book, pursuing every lead and never taking a night off - because autism feels like a war you rearm yourself nightly to wage. The comments suggest the parents may have been trying too hard. Perhaps they were frustrated that their efforts did not lead to greater improvement in their children. That would not be surprising, because dramatic improvement is what too many parents are led to expect.

Clearly there is a message in the recent deaths about the urgent need to increase support for the rising number of families struggling with autism. Having an autistic child is estimated to cost a family $10,000 to $50,000 a year for medical treatment, therapy and education. With 50 new diagnoses of autism in the United States every day, support services are already too stretched to meet the need.

But as much as I'd like to fault government policy, I suspect it is not entirely to blame. There's another issue that hits closer to home and is harder for most parents of autistic children to be candid about.

When your child's disorder is initially diagnosed, you read the early bibles of hope: "Let Me Hear Your Voice," "Son-Rise" and other chronicles of total recovery from autism. Hope comes from a variety of treatments, but the message is the same: If you commit all your time, your money, your family's life, recovery is possible. And who wouldn't do almost anything - mortgage a home, abandon a career or move to be closer to doctors or schools - to enable an autistic child to lead a normal life?

Now, as the mother of a 10-year-old, I will say what no parents who have just discovered their child is autistic want to hear, but should, at least from one person: I've never met a recovered child outside the pages of those old books. Not that it doesn't happen; I'm sure it does. But it's extraordinarily rare and it doesn't happen the way we once were led to believe.

According to her friend, McCarron was in despair in recent weeks because Katherine's language had regressed markedly. Every parent of a child on the autism spectrum knows this feeling: I've done everything possible; why isn't he better?

The answer is simple: Because this is the way autism works. There are roadblocks in the brain, mysterious and unmovable. In mythologizing recovery, I fear we've set an impossibly high bar that's left the parents of a half-million autistic children feeling like failures.

I don't mean to sound pessimistic about the prospects for autistic children. On the contrary, I see greater optimism in delivering a more realistic message: Children are not cured, but they do get better.

And better can be remarkable. At 10, my son is a far cry from the toddler who melted down when the sand was the wrong texture for drizzling. These days he embraces adventure, rides his bike, and repeats any story he tells five or six times. I remember thinking maybe we'd laugh someday at the lengths we went to when we were teaching him language - the flashcards, the drills, the repetitions.

Now he's 10 and talking at last in his own quirky ways, and we don't laugh about the drills (though we laugh about plenty of other things). Language is a victory. So is connection and purposeful play. So are the simpler things: a full night's sleep, a tantrum-free day.

Parents working toward these goals will one day be surprised and delighted by their children's funny new obsessions, odd fixations and tentative but extraordinary connections with other children.

Being more realistic from the start might make it possible to enjoy the journey and to see it for what it is: helping a child who will always function differently to communicate better and feel less frustrated.

To aim for full recovery - for the person your child might have been without autism - is to enter a dangerous emotional landscape. For three children, the disconnect between parental determination and limited progress may have been lethal.

And another article which is only interesting to me by virtue of being in the SI Advance, and relating to Staten Island.

Islanders back autism research
Monday, June 05, 2006
By MAURA YATES
ADVANCE STAFF WRITER

Staten Island families touched by autism gathered together yesterday for the 2nd annual Walk for Autism Research, sponsored by the National Alliance for Autism Research and Autism Speaks.

A large contingent of Staten Island families gathered to ride the Staten Island Ferry to Manhattan, where the walk wound from South Ferry to the marina in Battery Park City and back.

More than 60 supporters of Danny Flynn, 4, of New Dorp, turned out to cheer on his family as they made the walk. Danny, who will turn 5 later this month, is autistic.

The team all wore white T-shirts with Danny's picture on the front, and "Walking for Daniel 2006" written on the back.

The incidence of autism is growing, now accounting for one in every 104 male births, and one in every 166 births overall.

"Everybody should help out and figure out what's going on," said Danny's mother, Teresa.

Danny's brother, David Jr., 6, helped the cause by bringing fliers to school to drum up support. He sported a blue puzzle piece painted on his cheek yesterday, a symbol of the puzzle of autism, a developmental disability that knows no cause or cure, and can only be managed through therapy.

With the help of 30 to 40 hours of therapy a week, Danny "has made a ton of progress," Mrs. Flynn said. "This is the one thing they know that helps these kids."

"It's a rough thing when you have an autistic kid," said Danny's father, David Sr., a dentist. "My patients have kicked in so much money," he said.

Danny's friends and family pooled together more than $14,000. As of yesterday morning, the Flynns were in fourth place out of about 200 teams in terms of fund-raising, Mrs. Flynn said.

"It's great to be able to help kids," said Tony Ciotola of New Dorp, who walked with his wife, Joan, and daughter, Deanna, 7. "This hurts a lot of people. Something's got to be done to help them correct this."