There is no justification for killing your own child. Not autism. Not even the worst possible disease you can imagine.
And still, we are left to make sense of cases like that of Superior mom Stephanie Rochester, in hopes of avoiding future tragedies like hers.
Rochester has been accused of smothering her 6-month-old son due to fears that he had autism. According to media reports, Rochester planned to commit suicide, but feared that the baby would be a burden to her husband. A mental health professional, some speculate she may have had contact with parents whose children were autistic and might have seen firsthand how hard a family’s life can be when a child is autistic.
Local parents who have children with autism acknowledge that having a child with autism can be extremely difficult. They say that Rochester’s story, even if she is found innocent, even if her baby didn’t have autism, is an opportunity. It is an opportunity to highlight the need for more support and resources for such developmental disabilities — not just financial, but emotional, and not just for the patient, but for the families.
And they say there are success stories that should give parents of autistic children a light at the end of the tunnel.
Abigail
“No one in the autism community would condone killing a child,” says Jill Tappert, a Boulder mother who helped secure the passage of a new law that will require insurance companies to cover more autism treatments starting July 1. “With that said, it’s hard. It’s overwhelming. There were days when I wasn’t sure I was going to make it to the next day.”
Tappert says her daughter Abigail was diagnosed with autism when she was 2. And that was actually a good thing, since most kids with autism don’t get diagnosed until around age 5, even though parents often suspect it earlier. A diagnosis within the window of about 1 to 3 years old means that various treatments can be significantly more effective in improving the child’s condition.
If you can afford them. Tappert says Abigail suffered from self-injurious behavior, meaning that she would hit herself, and sometimes others, often giving herself bruises around her forehead and hips. Because of the possible injuries, her daughter could not safely be left alone. She would have a meltdown when her mother would leave the room, and she would often throw a tantrum when she was interrupted while playing with her animal toys.
“We would walk on egg shells,” Tappert says of those days, the low points. “I’d dehydrate myself, because I couldn’t go to the restroom … I couldn’t get the mail from the damn mailbox.”
She was getting only three or four hours of sleep, because her daughter constantly woke up in the middle of the night. On top of being sleepdeprived, demands during the day included shopping for her daughter’s special diet, research on the disorder, doctor appointment schedules and advocacy efforts. She also spent a lot of time with her daughter, helping build coping skills for overcoming small challenges and making accommodations when challenges were too steep.
“I used to work an 80-hour-a-week job,” Tappert says. “This is harder.”
Ask her about the high point, and you can hear her smile over the phone. “I took her to the library yesterday,” Tappert says of her daughter, who is now 7 and likes to go swimming. “She used to refuse to leave the house. … I can walk away from her and her brother playing, and it’s safe. I can go make lunch.
“There is hope, and we’re an example of that,” she continues. “We were in a dark place.”
Legislative effort
Abigail got better because Tappert invested a lot of her own time and a lot of money in a variety of treatments. She estimates that the family was spending almost $100,000 a year on treatments, which range from special diets to applied behavior analysis (ABA), a treatment that has proven effective, especially in young children.
But most people can’t afford that, and insurance companies often don’t cover the treatments, which is why Tappert helped spearhead a legislative effort in 2009 that resulted in the passage of SB 244, also known as “Health Insurance Mandated Autism Treatment,” or HIMAT.
Thanks to that bill, private group health insurance companies subject to Colorado law will have to start covering seven types of autism treatments for children under 18 years old, starting with policies that are issued or renewed after July 1 of this year. The covered treatments include ABA, in addition to evaluation and assessment; occupational, speech and physical therapy; psychological care, including family counseling; pharmacy care; and psychiatric care.
“It was a big effort by a number of people,” Tappert says. “It was nice to see people come together and give their time, which is stretched thin already.”
Tappert says the new law is an improvement, but more is needed. She points to support and resources for families as an area that sorely needs more funding and attention.
“People can get through it, and kids can make progress, but families need more support,” she says, adding that if she just had a bit of assistance from a nonprofit or another charitable organization with things like running basic errands, it would have made a huge difference.
And it’s not just support for parents and their marriage, but siblings as well. Tappert says Abigail will likely outlive her parents, and her 3-year-old brother will likely have to watch out for her when she is an adult.
“He’s going to have an additional job, and that’s hard, and that’s not fair, but that’s where we are,” Tappert says.
More support needed
Local organizations like Imagine! provide a wealth of resources and support to those with developmental disabilities and their families, and parents of children with autism spoke highly of them.
But Megan Richardson of Longmont, whose son Adam was 2 years old when he was diagnosed with autism, says more support is needed, especially in the early stages. She says she was on her own from the start, from the time her son’s slow development was brushed off by pediatricians to the time a doctor at The Children’s Hospital told her it was autism on her way out the examination room door, hurrying to her next appointment.
Richardson says she feels fortunate to be wealthy enough to be able to afford the different treatments she discovered in her research and to have an insurance company in Florida that is covering many of those expenses, albeit belatedly and with constant
roadblocks.
“We
make a good living. We’re lucky,” she says, adding that if she won a
million bucks she would give it to a poor family that is dealing with
autism. “It’s a very expensive crapshoot.”
Richardson says the new Colorado law is good
news because it covers ABA, a treatment that insurance companies have
deemed “experimental and unproven,” an assessment she calls “complete
bullshit.”
She
suspected something was awry when Adam was 15 months old and wasn’t
pointing at things, wasn’t making eye contact.
“There was just something
missing,” Richardson says.
Now, he has made so many strides that to the untrained eye, you
would never guess that he has autism, she says. It was due to the
treatment and her constant efforts to engage him, like making him say
“ma” before she would turn the pages of a book.
“The first time he pointed
at something, I couldn’t contain it,” Richardson says. “The laundry
doesn’t get done, the dishes don’t get washed, but I have a kid who
looks at me.”
She
acknowledges that she got depressed and lonely, but can’t imagine taking
the step that Rochester is accused of taking, especially if the reports
that Rochester worked with families struggling with autism are true. If
those reports are true, she should have known that you can’t
diagnose autism at six months, Richardson says. Even if it was autism,
she points out that the child could have had a mild case that was
largely treatable.
The
disability is now referred to as “autism spectrum disorders,” because
it occurs across a broad spectrum, ranging from minor to severe, from
simple restlessness to what one parent described as wiping fecal matter
on the walls.
“What
if I said that if my kid’s going to have cancer, I’m going to snuff him
out?” she asks. “We’ve all gone through the ‘why us,’ ‘why me,’ but
they’re your kids.”
Richardson belongs to a local support group for parents of
children with autism, and a few of the mothers get together at least
once a month “to have a few drinks, laugh at what the kids did, and cry,
if you need to.”
Aidan
Another member of that
support group, Shari Watson, says she started getting mad when she read
reports that Rochester was worried that she and her husband wouldn’t
have fun anymore if they had a child with autism. Like Richardson,
Watson agrees that having children is a gamble, and you never know what
you’re going to get.
“You can’t give them
back, but you can give them away,” she says.
Watson’s son Aidan, who is 11 years old, was
diagnosed with a type of autism spectrum disorder called Asperger
syndrome. Aidan is intelligent, bright and inquisitive. But emotionally
he’s about half his age, she says.
“At age 11 and five feet tall, he can still fall on
the floor and scream in a public place,” Watson says.
Aidan attends a special
school in Englewood where there are three other students and three
teachers. Watson gets daily written reports on how he is doing, and she
says it is not unusual to see comments like “left class without
permission and didn’t tell staff where he was going” or “locked staff
out of the kitchen and yelled and screamed.”
“For us a good day is when he didn’t hurt
anybody,” she says. “We worry about what’s going to happen when he’s an
adult.”
Still,
during a photo session at the Boulder Public Library, Aidan is perfectly
well-behaved, explaining why he prefers the simplicity of his
cassette-tape player to his iPod, asking questions about the
photographer’s camera, suggesting places to take photos and striking new
poses with his mother.
Watson says that Aidan’s inquisitiveness has rubbed off on her,
and that she has learned an immense amount about a variety of topics
simply because of his curiosity.
“You can’t take a walk without him turning over every
rock he sees,” she explains. “I don’t believe that autism is the worst
thing that can happen to you.”
As for insurance, Watson says her previous carrier
wouldn’t cover treatments, contrary to its own rules, so she appealed,
and the state’s division of insurance has fined the company twice as a
result.
“Most
people don’t have time to do that,” she says. “Most don’t understand the
policies because of how they are written.”
Now, under Blue Cross, Aidan’s autism treatment
is covered, but it is a pre-existing condition.
“So we pay twice as much
for his insurance, even though he hasn’t gotten any treatment from
them,” Watson says.
Environment
or genetics?
Theresa
Wrangham, a co-founder of the Autism Society of Boulder County, says
she was able to fund treatments for her 19-year-old autistic daughter in
part because her husband’s job pays well.
The downside is that he works in Alaska as a
senior software analyst for the Trans-Alaska Pipeline.
Asked about the baby’s
death in Superior, Wrangham says that if Rochester was suffering from
postpartum depression, that could have been a contributing factor. But
she also acknowledges that there have been cases of parents who have
taken their children’s lives and their own after hearing about their
child’s diagnosis.
“It’s
tragic, because it could mean that this parent had no support and
didn’t know where to go for support,” she says. “This is a symptom of a
lack of support for this growing population.”
When her daughter Rachel
was diagnosed at age 6, Wrangham got the distinct impression that she
had “missed the boat” because her daughter had not been diagnosed
earlier. Wrangham was told that her daughter would probably never read,
have friends, go to college or get a job. Her daughter has done all of
those things.
“It’s
very crushing as a parent to get that listed off,” she says. “Nobody
really knows what our kids are capable of.”
She calls for more federal and state money to
make sure things like special education are fully funded and not
approved as “unfunded mandates,” as has been the case with the
Individuals with Disabilities Education Act (IDEA).
“We’re going to have to put
a higher priority on this population, and it’s not just autism, it’s
all developmental disabilities,” Wrangham says. “I can’t believe that
someone would want a child who has a lower capacity to end up homeless
on the street. I refuse to believe that.”
She says autism spectrum disorders are the
fastest-growing developmental disability in the nation, now striking
about 1 percent of the population, and that can’t be attributed entirely
to greater awareness, broadening the term to include a “spectrum” of
disorders or improved diagnosis. She believes that autism is not just
caused by genetics, but increasingly by external, environmental factors
such as vaccines, pesticides, mercury from coal-fired power plants and
phthalates in plastic. Wrangham has given public comment about her
concerns in Washington, D.C., to a National Institutes of Health
committee.
She
points to a 2009 study by University of California at Davis Professor
Irva Hertz-Picciotto as evidence that factors such as enhanced
awareness, the expanded definition and better diagnostics only account
for about 30 percent of the increase in autism seen in recent decades.
“So that means the
other 70 percent is not genetic, it’s environmental,” Wrangham says.
Building awareness
Linda Baran, a
Boulder Community Hospital psychologist at the Mapleton Center who
specializes in autism, notes that there has been a 200 percent increase
in autism cases over the past 30 years, and she agrees that the increase
is due to multiple factors.
“It looks like it’s
more than just genetics, environment or diet,” she says. “It’s probably a
combination of all of them.”
Baran also agrees that autism can take a severe toll
on families, in part because parents begin to feel isolated. They can’t
go to the store. They don’t get invited to kids’ birthday parties. They
can’t attend a barbecue or a picnic because of their child’s behavior.
“Life almost becomes
therapy,” she says.
“Instead
of baseball games or piano lessons, for awhile they’re just taking
their kids to therapy.”
She adds that, the next time you see a child’s meltdown in a
grocery store, think twice before judging.
“Not every child misbehaving in the store is
doing it because of parenting problems,” Baran says. “We all do it.
You’re in there, trying to shop, and you say, ‘I wish they’d rein their
child in.’ And really, they need empathy, not judgment.”
Sue Thomas, who co-founded
the local autism society with Wrangham in 2001 and has a 19-year-old son
with autism, says she was “sick to my stomach” when she heard about the
accusation against Rochester.
“If she cried out for help, nobody heard it,” Thomas
says. “Maybe she never saw any of our population that succeeded. It’s
not a dead-end road. They’re healthy people. They live long lives.
“It’s not the end of the
world,” she continues.
“Yes, it changes your life. I think it’s changed me for the
better. I’m more patient, and I appreciate more things than the parent
of a typical child.”
