“Nothing about us without us”—a refrain often heard in autism and disability communities—reflects the notion that, to effectively meet the needs of these communities, members of these communities must be invited to participate in and help inform research and policies.
Autistic people span a wide spectrum of differences in characteristics and abilities. About 30 to 40% of autistic individuals have co-occurring intellectual disabilities, and an estimated 25 to 30% have very limited or no spoken language ability. Many autism studies set an IQ cutoff so researchers can better tell which findings are related to autism rather than overall intellectual ability.
Gaining a better understanding of this group of autistic people is essential as we seek to develop a more complete picture of autism. If research doesn’t include autistic people with intellectual disability, it may describe autism in general but miss what’s unique to them. That means the findings from that research might not apply to those who weren’t represented.
That’s why researchers at the Duke Center for Autism & Brain Development proactively recruit research participants with intellectual disabilities and work to make the experience as smooth as possible for them and their families.
In the COMET study at Duke’s Autism Center of Excellence, three to five year old children watch a series of videos while an electro-encephalogram (EEG) measures their brain activity. One goal of the study is to distinguish patterns of brain activity between different sub-categories of autism, to better understand distinct needs and inform care. Including a representative portion of participants with intellectual disabilities is critical to identifying and distinguishing categories across the autism spectrum.
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Computer-vision for Multimodal EEG Technology (COMET) Study Investigators Kimberly Carpenter, PhD, director of the Duke ACE neurophysiology laboratory David Carlson, PhD, associate professor of biostatistics and bioinformatics Geraldine Dawson, PhD, founding director of the Duke Center for Autism and Brain Development |
Barriers to Participation
For families with a child who has special needs, going anywhere – school, the doctor, shopping – can be a struggle. Families must assess the burden of the extra time and effort it takes to participate in an activity. For some families, the benefits of research participation may not be worth the discomfort, especially if a clinical environment is already a source of anxiety.
Researchers, too, might be tempted to leave out participants who would have a harder time completing the study. They’re on a tight timeline to include as many participants as possible, and they need to collect consistent, accurate data from each participant.
Co-occurring intellectual disabilities can make it more difficult for an autistic child to understand and follow instructions and answer questions in a study.
“We may not be able to accurately capture other aspects of their intelligence when we’re giving them verbal instruction. They may be able to do the task, but we can’t measure that if we’re not communicating with them effectively,” said senior clinical research specialist Elias Peters.
Adaptations for Inclusion
The COMET research team takes care to ensure that every child has a comfortable experience and completes as many of the study activities as possible. “Many of us [on the research team] have some familiarity with autism and with intellectual disability; it’s what brought a lot of us here to study this,” said senior clinical research specialist David Akinsooto.
Accommodations to support inclusion of children across the autism spectrum start with pre-visit phone calls with caregivers to learn about their child’s needs and sensitivities. They find out what the child responds to, how they might react to the environment, and what snacks and toys would comfort or motivate them as they participate in study activities. The team also provides the family with handouts that describe what to expect in the visit.
For participants with co-occurring intellectual disabilities, the most important accommodation is time. Team members start those phone calls earlier and ask more questions about how the child communicates. They allow more time during the visit for the child to warm up and process each activity.
The extra time allows the staff to shape how they interact with that child. Researchers are flexible with how some of the tasks are administered, without affecting how data is collected. For example, a child can use a weighted blanket or sit in their caregiver’s lap while they complete study activities.
“We can put the EEG net on a caregiver first, or on ourselves, as that really helps some kids warm up to it,” said Peters.
Research program leader Samantha Major, MHSc, added, “It's important to get on their level and make eye contact when communicating, showing visual timers and schedules, and modeling the behaviors we want from the children- such as wearing the EEG net, sitting still, and watching the video- and then finishing with prizes or preferred activities as a reward.”
COMET asks families to come in for two or three in-person visits to complete the series of study activities. “If something is not working out, we don’t push it. We can try again next time,” said Akinsooto.
Why Inclusion Matters
One goal of the COMET study is to find a brain activity measurement that can be used to distinguish between different groups of autistic people, informing care and intervention strategies.
“In the clinic I see kids who are the same age, same diagnosis, respond to treatment differently. They’ll have different outcomes. Finding these biomarkers could lead to different personalized supports or therapies. We could save families a lot of questions, heartache, and frustrating trial-and-error if we could tell them exactly what will work best,” said Alexandra Bey, MD, PhD, an assistant professor of psychiatry and behavioral sciences who works on the COMET research team and sees patients in the Duke Autism Clinic.
This goal is only possible through including kids that, collectively, reflect all expressions of autism.
Children without developmental disabilities are also important to the study. “We want to measure how this group is different. Are we picking up features of autism, or particular features of intellectual disabilities? To do that, we need an accurate representation of the entire population. For neurotypical families, it’s a way to help those who are different. Every family brings something different to the table,” said Akinsooto.
About Duke’s ACE Studies
COMET is one of three research programs at the Duke Center for Autism and Brain Development supported by the NIH ACE grant. All three projects focus on autism detection in early childhood.
These interdisciplinary projects use the team’s psychiatric expertise along with computer engineering and artificial intelligence to develop more effective autism screening tools, outcome measures, and brain-based biomarkers. The shared goal is to develop more accurate and objective ways of detecting autism early. Early detection allows providers to refer families to supports and services as early as possible, helping to give autistic children the opportunity for better outcomes throughout their lifetime.