Cleveland Clinic Children’s psychologist and her team are investigating effectiveness of training programs that empower families to play a vital role in interventions

1 April, 2024, CLEVELAND: Innovative models of care that leverage telehealth and parent-mediated interventions can play a significant role in increasing access to care and improving the outcomes in children with autism spectrum disorder (ASD), says an expert from global health system Cleveland Clinic ahead of World Autism Awareness Day on 2 April.

According to the World Health Organization, around 1 in 100 children globally has ASD.

“In recent years, there has been a focus on the role of parent-mediated interventions for children with ASD. Families can be a really powerful resource to help children learn developmentally appropriate skills, enhance their independence, and harness their unique abilities,” says Cynthia R. Johnson, PhD, Director of Cleveland Clinic Children’s Center for Autism in Cleveland and Professor of Pediatrics.

 “As parent training can be provided through the various telehealth platforms, development of these programs gained momentum during the pandemic. This delivery method is now being evaluated as a potential solution for families who have limited or no access to specialized autism centers. Research undertaken by our Cleveland Clinic Children’s Team and others has shown the outcomes to be comparable with in-person delivery,” Dr. Johnson adds.

Leveraging telehealth to deliver parent training has many benefits including decreasing barriers to parental involvement, Dr Johnson says, highlighting that easy scheduling of virtual visits encourages multiple family members to engage in the therapy plan.

Dr. Johnson and colleagues from Cleveland Clinic and Case Western Reserve University have been working on two large-scale research projects on telehealth and autism studies. Their sleep intervention study has already been published, while findings from the other will be released soon. The preliminary results have been encouraging, demonstrating that family involvement is beneficial and that many families prefer to be engaged in the child’s therapy. In addition, the sleep study showed outcomes from telehealth programs for parent training were comparable to those delivered in person.

Parent training programs instruct parents in applied behavior analysis principles and provide targeted strategies for – among others – behavioral, feeding and sleep problems. Dr. Johnson points out these interventions not only benefit the child but the overall family well-being. Parental involvement has also been shown to significantly reduce parental stress and improve parents’ sense of competency.

Importance of early intervention

Whichever form the intervention takes, Dr. Johnson emphasizes that timing is key, as early interventions maximize optimal outcomes, so all parents need to be aware of the signs to watch.

There are two key components to ASD, with diagnosis possible as early as in the first year of life, according to Dr. Johnson. First, there is a deficit in communication and/or a deficit in using communication socially, for example, not making conventional eye contact and not using non-verbal cues such as pointing and waving. Second, restrictive or repetitive behaviors are present.

“Parents with toddlers and preschool-aged children should be on the lookout for delayed speech and unusual communication development. Possible symptoms can include lack of use of gestures, repetitive speech or phrases; limited imitation of other people’s actions and emotions; atypical, repetitive and restricted play; engaging in repetitive motor movement such as hand flapping or finger flicking; or oversensitivity to sound,” says Dr. Johnson. “The earlier that we can identify ASD, the faster we can address these children’s differences and help to avoid a cascade of disruptions in early development.”

Diagnosis comes after interviews with parents and teachers, along with specialized autism-specific tests. Depending on the specific circumstances, these assessments are another potential area that could be offered in part or fully through telemedicine.

Commenting on applying the learnings from the ongoing studies, Dr. Johnson concludes, “Our research and others are demonstrating that telehealth delivery of parent-mediated interventions has the potential to improve access to care for children with autism, while benefitting the family as a whole. Some families actively want to be more involved, so as healthcare providers, we can work towards offering them this choice. We could research different models to see what best meets the need of each specific child and family, for example, a hybrid model with in-person and telemedicine interventions could be an option.”