Autisms Parent Trap

The New York Times
By Cammie McGovern
June 5, 2006

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

On April 12, in Hull, England, Alison Davies and her 12-year-old 
son, Ryan, fell to their deaths from a bridge over the River 
Humber, in an apparent murder-suicide. (A note was found in Ms. 
Davies's kitchen.) On May 14, in Albany, Ore., 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 May Sunday, in Morton, Ill., Dr. Karen 
McCarron admitted to the police that she had, the day before, 
suffocated her 3-year-old daughter, Katherine, 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 Dr. McCarron's  a fellow member of her local 
autism-support group  told a columnist for The Journal Star
of Peoria, Ill., that Dr. 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 
re-arm 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 in out-of-pocket 
expenses for medical treatment, therapy and education. With
50 new diagnoses of autism in this country 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 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, Dr. 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 to families: 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.

Cammie McGovern is the author of "Eye Contact," a novel.

______________________________________________________________

For more Education news issues, see:
www.aapd.com/News/education/indexeducation.php

# # #

DISCLAIMER: The JFA Listserv is designed to share information
of interest to people with disabilities and promote dialogue
in the disability community. Information circulated does not
necessarily express the views of AAPD. The JFA Listserv is
non-partisan. 

JFA ARCHIVES: All JFA postings from 1995 to present are 
available at: http://www.jfanow.org/jfanow/

MODERATOR, Gwen Gillenwater, JUSTICE FOR ALL -- A Service of
the American Association of People with Disabilities. To 
contact Gwen, please email her at JFAgwen@aol.com.

JOIN AAPD! There's strength in numbers! Be a part of a national
coalition of people with disabilities and join AAPD today at 
http://www.aapd.com.

                  Justice-For-All FREE Subscriptions
                     To subscribe or unsubscribe,
                send an email to majordomo@JFAnow.org
            with subscribe justice OR unsubscribe justice
                 in the body of your email message.