Study Reveals Wide Gap in Awareness of AAC Devices for Children With Autism
New research from Children’s Hospital Los Angeles has uncovered a significant disparity in access to augmentative and alternative communication (AAC) devices—a critical technology for minimally verbal children with autism.
In families with minimally verbal children, the study found that 84% of white families had access to an AAC device, compared to only 32% of racial and ethnic minority families. Even more concerning, more than half of families from racial or ethnic minorities reported not knowing what an AAC device is.
The study results were recently presented at the Gatlinburg Conference in San Diego and at the International Society for Autism Research meeting in Seattle.
“These are striking numbers,” says Charlotte DiStefano, PhD, Lead Psychologist for Autism and Neurodevelopmental Services at Children’s Hospital Los Angeles and the principal investigator of the study. “The gap is not just about access to the device. The gap is in not even being aware that AAC devices exist and that you could ask for one for your child.”
A glaring disparity
Approximately 30% of individuals with autism are nonverbal or minimally verbal, with little to no spoken language. An AAC device—typically a tablet with special software—can be a vital tool to help these individuals communicate and to promote spoken language.
To better understand disparities in AAC access, Dr. DiStefano and her team identified more than 4,000 CHLA patients who had an autism diagnosis in their electronic medical record (even if they were seen at CHLA for other reasons).
The team then sent an anonymous survey to those families, with 475 families responding. Of those, 106 reported that their child was minimally verbal and completed the full survey.
Not surprisingly, families who reported being from a racial or ethnic minority, or who spoke a language other than English at home, were much less likely to access an AAC device for their child.
But the team was startled at the glaring disparity in families’ knowledge of the device. The study found that:
- 64% of white, non-Hispanic families had an AAC device for their child, and another 20% had had one in the past.
- Only 30% of families from minority groups currently had a device, and only 2% had had one in the past.
- 55% of families from racial or ethnic minorities reported having no prior knowledge of ACC devices—versus just 12% of white families.
- The disparity between the groups was similar based on home language—with English-only families having a much higher use and knowledge of AAC devices than those who speak a language other than English at home.
Dr. DiStefano notes that the ages of the children in the study were comparable, so age was not an explanation for the differences between the two groups.
Promoting language and communication
The disparity is particularly concerning because AAC devices are increasingly recognized as promoting communication and spoken language in children with autism.
“My own studies as well as many others have found that when you give these kids access to some type of AAC, they actually make more spoken language progress than their counterparts who don’t have access to the device,” says Dr. DiStefano, an investigator in the Kids with Neurogenetic and Developmental Disabilities (KINDD) Lab at CHLA.
Sometimes, use of AAC can even reveal that a child has much higher language capabilities than previously perceived. More commonly, families report higher quality of life and improvements in their child’s challenging behaviors and frustration levels.
“These devices can make a significant impact on a child’s life,” she says. “The goal is for more children to be able to access these devices, and to do so at much younger ages.”
Charlotte DiStefano, PhDWe want to better understand what’s contributing to these disparities so we can develop interventions that allow more children to access this critical tool.
Overcoming barriers
Dr. DiStefano’s team hopes to next delve into the reasons behind this. As part of the study, researchers conducted in-depth interviews with several surveyed parents to get an idea of the barriers families are facing. The team is now analyzing that data.
One possible barrier is that kids typically access the device through their school district, a process that may not always work as intended. And while CHLA has neurologists who specialize in autism and routinely educate parents about AAC, many providers and pediatricians may not feel knowledgeable enough to inform parents about this option.
“My guess is that everyone thinks someone else is informing the family,” Dr. DiStefano says. “We want to better understand what’s contributing to these disparities so we can develop interventions that allow more children to access this critical tool.”
Additional investigators on this research were Shafali Spurling Jeste, MD; Madeleine Hare; Emily McFadd, PhD; and Sydney Jacobs.
