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From the
Vancouver Sun in Canada:
Ava and Hanna (pictured) both had a handful of words at about eight months old. “But then Ava just stopped and Hanna kept going,” said Hornbeck, who was doing graduate studies on early childhood education at Rutgers University in New Jersey when she became pregnant.
“I tried to teach the girls to sign when they were about 12 months old and Hanna picked them up and Ava didn’t,” Hornbeck said. “She just wasn’t learning language.”
Ava, now five, was passive and hard to motivate. She didn’t play with other children.
“I had been worried about Ava and I took her to a neurodevelopmental pediatrician with all my concerns and was told she had anxiety,” Hornbeck recalled. “I thought, really? Anxiety?”
“It makes me crazy, because most parents would love to hear that and carry on as though nothing was wrong,” she said.
Ava was two years old before Hornbeck finally got a diagnosis of PDD-NOS, a developmental disorder in the autism spectrum.
“It’s a bit frustrating how little research seems to inform what’s happening on the ground,” said Hornbeck. “Right from the get-go I was amazed.”
Although autism disorders are highly variable, most children begin to exhibit symptoms by six months and characteristic symptoms are well-established by the age of three.
People with autism often have difficulty with social interaction, show delays in certain brain functions and impaired language development. Autistic people may avoid eye contact and some perform repetitive behaviours such as hand-flapping or rocking.
“You always hear about the importance of early intervention,” Hornbeck said. “But you can take your kid to a specialist and not get a diagnosis.”
Luckily Hornbeck had months earlier devised her own therapy program for Ava. Though her success may have delayed Ava’s diagnosis, Hornbeck may also have headed off many of her daughter’s symptoms before they even started.
When certain behaviours and ways of thinking become ingrained in the mind they can be very difficult to dislodge, according to Brain Research Centre scientist Adele Diamond.
“The brain gets used to working in particular ways so you’ve got to start early, but there’s more to it than that,” said Diamond, a leader in the field of developmental neuroscience.
“If a child has trouble developing language or normal social interactions, you begin to get feedback from the environment that you are odd or weird,” she explained. “It starts a dynamic that leads down a path that is hard to reverse and leads to worse outcomes.”
Hornbeck ensures that Ava is practising interaction and language as much as humanly possible — with a million little tricks — to ensure that she never shuts down socially.
“It can be simple things,” she said. “When we go on a trip I give the crayons to Hanna, so that if Ava wants a crayon she has to ask for it.”
“If she had her own crayons she would just disappear,” Hornbeck said.
Therapeutic programs are designed based on a model call Applied Behavioural Analysis, which employs scientifically derived principles to improve social behaviour and thought processes.
“Everything you read about the ABA model says that you need to put in 40 hours a week on therapy, but no one anywhere is providing 40 hours a week in therapy,” Hornbeck said. “The most we ever got was six hours a week, so as parents we had to fill that void and figure it out on our own.”
Ava’s father Chad Hornbeck is a chiropractor and was able to take on his daughter’s physical therapy, while Amy put in as many hours as possible on social therapy. The Hornbecks also employ a student, Meghan, to put in therapy hours with Ava so that they can keep up with the requirements of running a household and, of course, spend time with Hanna. During her senior year in high school, Meghan spent three hours each afternoon with Ava and comes back to help out during college breaks and holidays.
“Being the parent of a child with autism is essentially a full-time job,” Hornbeck said. “We used to keep a log of how many contact hours she got.
“Depending on the severity of the case, you really can’t leave an autistic child alone for any length of time,” she said. “If you do they just retreat into their own world; you have to engage them constantly.”
Having a twin turned out to be a huge blessing for Ava, because she always had a playmate and someone who would engage her socially. In a one-child household, vital social interaction and basic play with other children might amount to only a few hours a week, perhaps at a pre-school.
Ava attended a Tools of the Mind preschool, which supports learning through social interaction, role-playing and play.
Diamond’s work with Tools of the Mind students has found that children who spend time in “social pretend play” outperform children who receive just academic instruction in what scientists call “executive function,” the ability to plan, concentrate, control physical impulses and follow social rules.
Tests of executive function can more accurately predict academic achievement than IQ tests.
Diamond is now conducting longer term studies on the effect.
That play could turn out to be so important to the development of any child is not a surprise to Diamond, who waxes homespun rather than technical despite the complexity of her field of inquiry.
“If you look at all human cultures for tens of thousands of years, kids have played,” she said. “Kids today don’t play nearly as much as they used to.”
Today, she explained, parents are afraid to let their kids out to play in the neighbourhood, leaving children in one-on-one playdates or alone in front of the computer or the TV.
“Children need that social interaction,” she said. “It’s important and schools are far too ready to get rid of it for more academic instruction and parents are far too ready to let their children be alone.”
For Diamond there is no special science to raising the healthiest possible child and it forms the heart of any therapy for children who need more help.
“My mother would never give out child-rearing advice,” Diamond said. “She would always say, ‘Just love your child: Spend time with them, play with them, listen to them, talk to them.’”
“That will carry you a long way,” she said.
Diamond watches the real world for clues to the workings of the mind and uses what she learns to form new lines of inquiry.
“The real world will tell you if what you are doing in the lab isn’t fitting quite right,” she said. Diamond published a research paper recently inspired by her observations of her husband and son, who both have Attention Deficit Hyperactivity Disorder. Diamond’s research concludes that ADD without hyperactivity is a completely different disorder without the frantic, energetic behaviour that characterizes ADHD.
“I could see that ADHD simply didn’t fit and took it back to the lab,” she said.
The same applies in her work with the Tools of the Mind preschools, where real children, their challenges and successes provide the clues.
Social play rules the day for children, autistic or not.
From the Vancouver Sun in Canada:
