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Caregiver Training Helps Children With Autism From Low-Resource Families

June 25, 2014

By Anne Harding

NEW YORK - At-home caregiver training can significantly improve social communication in children with autism from low-resourced families, a new study shows.

After three months, children's joint engagement and initiation of joint attention had significantly improved, as had their symbolic play skills.

"We really aimed to change those core deficits in children with autism, and we were pretty successful in that short period of time," lead author Dr. Connie Kasari of the University of California, Los Angeles told Reuters Health. "It's not enough of course in that you can't just give three months of treatment and expect that all will be fine, but it does help families understand what some of the issues are and to advocate for services for their children in the schools."

While there is an evidence base of early interventions that are helpful for children with autism spectrum disorders (ASDs), Dr. Kasari and her team note in their report, there is less information available on the effectiveness of interventions delivered by caregivers rather than trained therapists. What's more, low-income and minority families are poorly represented in randomized controlled trials of these interventions.

To address these issues, the researchers randomly assigned 147 families of preschool-aged children with ASDs to an individualized caregiver-mediated module (CMM) intervention or a group caregiver education module (CEM) intervention. Families were either low income based on the US Department of Housing and Urban Development index, or had at least one indicator of low resources, such as Medicaid eligibility. They were recruited from five different study centers across the US. Thirty-five families dropped out before beginning treatment, leaving 112 families, 95 of whom completed follow-up.

Families in the CMM group received two one-hour in-home coaching sessions per week. The manualized intervention consisted of helping caregivers establish "dyadic engagement" during three routines, one involving play and two others addressing activities such as chores and grooming, based on the family's preference. The 15% of families who did not speak English at home received the intervention in their preferred language.

In the CEM group, caregivers took part in weekly, two-hour small group training sessions in community centers, clinics, schools, and other neighborhood locations, without the children present.

At three months, children in both groups showed improvements in joint engagement and initiating joint attention, but improvements were greater for the CMM group. For the primary outcome, joint engagement, the increase was clinically meaningful for CMM participants, with a moderate treatment effect size of 0.21. The effect persisted at follow-up, three months after the end of treatment, according to findings published online June 23 in Pediatrics.

Improvements in initiating joint attention were maintained for both groups at follow-up. There were no improvements for either group in functional play. There was some improvement in symbolic play for the CMM group, but this did not remain at follow-up.

"There were a number of strategies that we used in order to reach these families," Dr. Kasari said. "We really went the extra mile." The fact that a substantial number of families wanted to participate but wound up not beginning treatment, she added, "speaks to how difficult it is sometimes to engage families who have a lot going on, who have very few resources, and to stay in the game even when they are interested in doing so."

While families with fewer resources will notice something is wrong if their child has an ASD, Dr. Kasari added, "they get lots of other diagnoses first, or they're not given a real formal diagnosis until much later. This can delay appropriate interventions."

Currently, Dr. Kasari said, she and her colleagues are working with community groups in the South Central Los Angeles area to help families of children with ASDs get treatment. "What we're going to do next is much more community-partnered work, to really understand more of the issues for the community, to see if we can throw the net a little wider," she said.

In another study published in the same issue of Pediatrics, Dr. Tracey Becerra and colleagues, also from the University of California, Los Angeles, found an increased risk of being diagnosed with autistic disorder (AD) among the children of foreign-born mothers who were black, Latin American, Filipino, and Vietnamese compared to children of US-born white women. The researchers also found a greater risk of being diagnosed with autism among children whose mothers were African-American or Hispanic and born in the US compared to children whose mothers were white and US-born. They conclude, "Future studies need to examine factors related to nativity and migration that may play a role in the etiology as well as identification and diagnosis of AD in children."


Pediatrics 2014.

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