April is Autism Awareness Month: 
Tackling Service Delays with Telehealth

Jessica Simacek in ICI's Telehealth Lab, working online with a client.

A squirming toddler having his hair brushed uses an electronic communication device to signal he has reached his limit. Another child holds up a picture card with a banana and practices saying “ba,” her snack request, at the family table.

Without these and other essential communication tools, often lacking due to barriers in accessing services, young children with autism experience stress and frustration. Thanks to ICI’s Telehealth Lab, however, more families are learning these interventions earlier.

And timing, particularly with very young children who are waiting for services, is everything.

When a parent or professional identifies possible signs of autism spectrum disorder (ASD) in a child’s behavior, for example, families routinely wait many months for a confirmed diagnosis. Then they wait again, for an average of nine more months, to receive intensive intervention services.

A severe shortage of service providers in Minnesota and around the country creates long wait times, particularly in rural areas, said Jessica Simacek (pictured), director of the Lab. As a result of the COVID-19 pandemic, the need is even more urgent today, she said.

“Telehealth is a tool that is helping bridge that gap people are experiencing before receiving services,” said Simacek. Together with ICI researcher Adele Dimian, Simacek leads a team of professionals who study and measure the effectiveness of telehealth-based assessments and early intervention methods and provide training and technical assistance in these areas. With a secure internet connection and a camera, the team can coach parents in their homes on intervention techniques. The process involves more hands-on time from parents, which is an important factor to monitor so as not to contribute to parental stress or make it difficult for families to participate, Simacek said. It also has the potential to build parents’ confidence and sense of accomplishment as they learn strategies that work to help their children, she said.

The American Academy of Pediatrics recommends rigorous, professional intervention for 25 hours per week as early as possible around the time of diagnosis. Because of the service delays, however, a relative few families can access that level of service.

Through telehealth, however, ICI can offer interim coaching and assistance with the most promising, research-based interventions.

Both Simacek and Dimian are former fellows of ICI’s interdisciplinary Minnesota Leadership Education in Neurodevelopmental and Related Disabilities (MNLEND) program, and continue to serve as faculty mentors. Marianne Elmquist, who trained with the team as a LEND fellow, is currently using videoconferencing to collect data on the home use of augmentative and alternative communication as part of her dissertation in special education at University of Minnesota.

“There is also a fellow this year who adapted a survey we had conducted on barriers to intervention and replicated it in the physical therapy area,” said Simacek. “Coming up with these innovative intervention solutions won’t replace that 25 hours of intensive intervention, but it will provide a bridge so that more kids can get access to services as soon as possible while they wait.”

Focusing on high-priority communication skills is the key to success, she said.

“A child’s quality of life is directly impacted by their ability to communicate. While we do provide intervention around challenging behaviors, we focus hard on making sure children have a way to communicate their wants and needs.”

In recognition of Autism Awareness Month, as well as the home confinement and service disruptions so many families are experiencing now due to the virus, Simacek and Dimian shared the following suggestions for parents and caregivers to support children with complex communication needs:

  1. Notice when your child is doing something that you want them to do. Praise them and celebrate it, instead of focusing on what they shouldn't be doing.
  2. Tell children what TO do instead of what NOT to do. If your child is coloring on the walls, get out some paper and ask your child to draw you a picture of an elephant (or show them how).
  3. Strive for providing structure and predictability throughout the day.
  4. Offer choices. This can include non-verbal communication, such as reaching for a toy when given a choice between several options, or selecting a picture of an activity they would like to do.
  5. Respond to your child's communication attempts, whether verbal or non-verbal. Try to expand on what they are communicating with you. For example: "Oh, you pointed outside, let's get shoes and go" (and show them how to point at shoes).
  6. Give your child planned and proactive times to do things that they like to do. For example, if they like to go and jump on the trampoline, plan to do this every couple of hours instead of waiting for them to get bored or upset.
  7. Explore new activities. Start small and make it fun! If you are playing with car tracks, let your child watch you play with them first. The next time you get the tracks out, have a child put just one car down a ramp and over time, continue adding on as your child likes the activity more.

“Don’t worry too much about doing everything on the list,” Simacek said. “This is a good time to be flexible with your child and yourself. You are both doing the best you can while experiencing a lot of change.”