The holidays are a time for family, friends, joy
UA Family Studies and Human Development
Norton School psychologist Ann Mastergeorge says a 16-week program of activities can help mitigate some of the effects of the disorder.
For reasons still being debated – and there are a lot of them – the number of children with autism spectrum disorder, or ASD, has grown sharply in recent years. Autism, in its various forms, robs children of language, social skills or both.
And while it is a lifelong disability for those who have ASD, as its name suggests, the effects vary from barely noticeable to a form that essentially closes off the world to those affected.
But a University of Arizona researcher is encouraging parents of children with autism to actively do something about it, using strategies that encourage parents to provide a number of opportunities that engage their children in developmentally appropriate activities.
Ann Mastergeorge, a developmental psychologist in the Norton School of Family and Consumer Sciences, is studying the effects of a 16-week program called "parent-mediated intervention" and whether it can make a difference. Early indications, she said, show that many children improve significantly when parents learn techniques to facilitate their child's engagement in activities.
The rate of children in the U.S. with ASD is currently pegged by the Centers for Disease Control at 1 in 110, a worrisome figure for health experts. Just two years ago, the official rate was 1 in 150.
How and why this increase is happening isn't entirely clear. Experts say the causes of ASD can be explained by any number of factors, including changes in how autism is diagnosed, referrals and availability of services, age at diagnosis and public awareness. Environmental risks also haven't been ruled out, although there currently are no standards for assessing them.
The focus of Mastergeorge's research is on young children who have autism or who are at risk for autism, and about alerting people to its early signs. "How can we help physicians provide the surveillance necessary because many young children are seeing their pediatricians," she said.
Some hallmarks of autism appear in children as young as 12 months: not responding to their name, not pointing or showing or sharing objects. "Those are huge red flags, and it's about getting people to pay attention to them," Mastergeorge said. "Early intervention is key to mitigating those factors that you might see in autism."
"It isn't that they're not interested in being near people, just not interested in the social communicative interactions that we are engaged in all day long that we don't even think about that's a part of our being.
"For very young children, it's extremely difficult. For them, it's like being in a foreign country. If you think about yourself being dropped into a country where you don't know the language, customs or anything about the place, that is what it feels like for children with autism. They're very disorganized in their ability to relate to the environment and the people in it."
Child development experts know that there is a large variance in development and so some children develop later than others. But there are those key factors where it isn't normal for kids not to respond to their name or not be pointing or sharing something they find.
"If you watch kids in their environment, they're always pointing things out to people and then looking back at them to see whether or not they get feedback, either verbal or nonverbal. Physicians really have an opportunity to refer very, very early," Mastergeorge said.
"Even if there isn't a concern about developmental disability, but there is a concern about a delay because it is much better to err on the side of providing early intervention for somebody who is at risk, rather than waiting until a child is five, when they've had five years of basically not having the kind of intervention and interaction that they need."
Mastergeorge said some parents want to hear that there is nothing wrong, and only need to wait while their child catches up. Other parents know in their gut that something is wrong, but they've been told to wait.
The importance of early detection and intervention, therefore, is key to providing young children with the opportunity to grow developmentally. Mastergeorge said watching young children come into an intervention and grow in their abilities to interact and develop language and enjoy interaction is huge.
"I have a lens to be able to see light at the end of the tunnel. Families don't always see that light. They get a diagnosis and go into abject panic. Even with a diagnosis, the glass is still half-full, and can be filled with early intervention.
"That is what is important for people to understand. If we have early detection in place, the other important step is that we have early intervention services that are provided to families, that are evidence-based, and include the families in the intervention," she said.
The parent-mediated intervention focuses on joint attention and social interaction that initially was started at the University of California, Davis M.I.N.D. Institute and will be continuing at the UA with recruitment for families with young children with autism beginning in the next few months.
For this intervention, families are given toys and instructions to take home, along with a video camera to capture their interactions with their children. Mastergeorge and her colleagues look at the videos and offer feedback.
Currently there are 30 families in Mastergeorge's research cohort, all of whom are new to the world of autism.
"And we have seen children over the course of 16 weeks go from no interaction and no language to lots of interaction and language. It highlights the importance of families in intervention. A lot of children are sent off to have interventions and the families aren't always involved. That's changing and the more state-of-the-art method now is using parent-mediated intervention, especially for young children."
More information on parent-mediated intervention to be conducted at the Frances McCllelland Institute will be available soon online.
UA Family Studies and Human Development