Much has changed this year, and what hasn’t has certainly been modified or adjusted. We are all having to find new and creative ways to gather with family, friends, and neighbors during this time of social distancing. What hasn’t changed is our commitment to the community we serve.
At the Duke Center for Autism and Brain Development, we continue our impactful research and clinical services by pivoting to effective telehealth services – even across oceans. We continue to advocate, at the state and federal levels, for individuals on the autism spectrum, especially during this health emergency, when difficulties weigh most heavily on those with developmental disabilities, and those in rural communities and in communities of color. Given the profound events with which our nation has been reckoning, the Center has reaffirmed its commitment to equal access as a human right, sharing our Statement on Diversity and Inclusion. We continue to plan our popular events, such “Music 2 the Max,” and our video series featuring “Dr. Scott and Dr. Lauren’s Tips for Families Living with COVID-19, ADHD & ASD,” as we shift these to virtual activities. Most importantly, we continue to direct investigations and publish scientific research that helps people with autism spectrum disorder (ASD) to live their lives and contribute to society to their fullest potential. We hope you enjoy reading this newsletter and follow us on Facebook and Twitter, to stay in touch with us and to learn about the many ways we continue to look ahead.
Geri Dawson, Director, Duke Center for Autism and Brain Development
Advocacy, Opinion & Global Impact
Duke Center for Autism and Brain Development and Duke ADHD Program efforts to serve the community, continue cutting-edge research, and provide top-notch telehealth clinical care are going strong, even during the COVID-19 pandemic! Here, Autism Center Director Geraldine Dawson, Ph.D., and ADHD Program Director Dr. Scott Kollins, Ph.D., led the weekly, all-staff Zoom meeting for nearly 100 faculty and staff, sharing updates and new ways studies and services are pivoting to serve the community.
Center Leadership Meets with Congressional Coalition for Autism Research Rep
Kate Werley, Health Policy Advisor for Congressman Mike Doyle (D-PA), met with Duke Center for Autism Director Geraldine Dawson, Ph.D., and Child Psychiatrist and Duke Autism Center of Excellence Researcher Lauren Franz, MBChB, MPH, to discuss the need for increased support during the COVID-19 pandemic for individuals with ASD. US Rep. Doyle co-chairs the 180-member Coalition for Autism Research and Education (CARE), a bipartisan US Congressional organization dedicated to autism advocacy on Capitol Hill. At the June 4th meeting, Drs. Dawson and Franz shared concerns that the current national health emergency could worsen disparities in access and availability of services for individuals with ASD.
“During this national health emergency, it is imperative that individuals with ASD be reassured that they are a priority,” said Dr. Dawson. “Clear public health protocols should ensure that, in places with scarce medical resources, access to care does not discriminate against individuals with ASD.” Learn more about the Congressional Autism Caucus.
Center Researchers Share Impact of COVID-19 Research Globally
Duke Center for Autism researchers Drs. Geraldine Dawson, Lauren Franz, and Jill Howard shared their unique perspectives - including the resilience and resolve of the autism research community - in a recent commentary, COVID-19 and Autism Research: Perspectives from Around the Globe, published in the International Society for Autism Research journal's June issue. Drs. Dawson, Franz, and Howard pointed out how the adaption of online formats for ASD evaluations and interventions that has occurred out of necessity during the COVID-19 pandemic could ultimately lead to increased community impact around the world. In the same issue, Dr. Lauren Franz contributed an article explaining how pre-existing digital and socio-economic disparities magnify disparities in access to services in South Africa.
Partnership with Marbles Kids Museum Enhances Sensory-Friendly Experiences
The Center for Autism has partnered with Raleigh’s Marbles Kids Museum to enhance its sensory-friendly experiences for children with ASD. Center Recruitment and Outreach Coordinator Lori Reinhart-Mercer, RN, and a team of Center clinicians and research staff assessed Marbles’ interactive exhibits, events, theatre, layout, resources, and digital platforms to make recommendations for more inclusive experiences. Recommendations focused on preparing families prior to visits, providing enriched in-museum experiences, and improving processes to better gather feedback from families’.
“The Marbles team shared openly about the areas in which they wanted support,” said Margaret McAllister, a Center Clinical Research Specialist. “Their focus on learning and building community aren’t just policies, but also practices that we saw in action.” Center recommendations such as online ticket sales, “cool down kits,” and website enhancements will enhance museum resources already in place – such as noise canceling headphones, maps with moveable stickers to plan one’s visit, and sensory-friendly nights. The Center continues to work with Marbles to positively impact families to engage in creating lifelong, playful memories.
Center team members created social stories to help Marbles campers understand important COVID-19 rules.
Autism Center Clinicians Pivot to Telehealth – Keeping Diagnostic Assessments Going
The rapidly evolving challenges associated with the COVID-19 pandemic have caused countless disruptions for families who seek diagnostic assessments and support for their children who may have ASD. In response, Center for Autism clinicians, as part of research and clinical services, have rallied in recent weeks to adapt clinical practices to the necessary physical distancing constraints of the COVID-19 crisis. Rachel Aiello, Ph.D., a licensed psychologist with the Duke Autism Clinic and an investigator with the NIH-funded Duke Autism Center of Excellence/A+ Study, has supported efforts to convert diagnostic assessments of toddlers to telehealth evaluations using TELE-ASD-PEDS tool, built for this purpose and under evaluation in an ongoing trial at Vanderbilt University. TELE-ASK-PEDS, in conjunction with extensive clinical interviewing with the caregiver, can allow a trained clinician to conduct diagnostic evaluations of children at significant risk for ASD. Using the TELE-ASD-PEDS, Dr. Aiello coaches a caregiver through several basic tasks with their child via Duke-approved video conferencing technology and using toys and materials found in the child’s home. These tasks allow the clinician to observe for the presence of ASD symptoms and include social activities, or “social bids,” including opportunities for free play, physical play routines (e.g., peek-a-boo, tickling), and activities (e.g., snack) that may prompt a child to request.
Many caregivers have positively commented about their level of comfort in completing the tasks, convenience and safety with completing the telehealth evaluation in their homes, and their confidence of the diagnostic assessment results,” said Dr. Aiello. “Leveraging telehealth for the purpose of ASD assessment and diagnosis may address barriers families face in accessing early assessment and diagnosis during COVID-19, and in turn, this increased access can facilitate early access to interventions, resources, and family support, promoting long-term developmental outcomes and family functioning.”
Research Spotlight & Clinical Research Opportunities
Cord Blood Study Provides Insights on Potential Benefits for Autism Treatment: Some children with ASD may benefit, but more research is needed
In the Duke ACT funded by The Marcus Foundation, Duke Center for Autism researchers tested whether a single infusion of a unit of a child’s own or donor cord blood could improve social communication skills in children, aged 2-7, diagnosed with ASD. Of the 180 children in the study, the subgroup of children with ASD who did not also have an intellectual disability showed improvements in language communication, ability to sustain attention measured via eye tracking, and increased alpha and beta EEG power, a measure of brain function. However, those who also had an intellectual disability did not show social communication function improvement after the infusion. It is uncertain whether the lack of improvement in the group of children with ASD who also have an intellectual disability is because the treatment did not help or the measures used to assess improvement were not sensitive enough to pick up improvements in children who had intellectual disability. The team is currently conducting a new trial to evaluate the possible benefits of cell therapy for improving outcomes of children with ASD ages 4-7. Read more on our website, and read the published findings in the May 19 online issue of The Journal of Pediatrics. Those interested in the new trial can find out more information here or read more below.
It’s no surprise that COVID-19 has significantly impacted ASD clinical research and disrupted critically needed access to intervention services for children and families globally. Prior to the pandemic, Duke Center for Autism researchers already were working across the Atlantic to help caregivers in Cape Town, South Africa, sharing an adapted coaching version of the Early Start Denver Model (ESDM) for implementation by non-ASD specialists. When COVID-19 lockdowns began, South Africa implemented one of the strictest in the world. While a phased reopening is underway, children with ASD remain largely cut off from services and support. Adding to the challenge, less than 25% of the region’s households own a computer —and even fewer connect to the Internet. To find a solution and improve access to telehealth as an option for these families, the Center’s researchers adapted the study, and the coaching sessions and resources they provide, to real-time, clinician-caregiver telehealth interactions using smart phones equipped with pre-paid mobile broadband data.
“Identifying feasible solutions to support remote delivery of proven interventions could improve access and care for everyone with ASD, and it has the potential to expand access and inclusion for future research studies, as well,” said Dr. Lauren Franz, MBChB, MPH, a lead investigator for Center research.
Join Our Autism Research Family – Get Connected with Research Opportunities
The Duke Center for Autism and Brain Development Volunteer Registry for Autism Research connects families and individuals with research opportunities. Those enrolled in the registry receive information about emerging study opportunities that may be a good fit, as well as announcements about events and activities that are held throughout the year. The registry is open to individuals of all ages with and without autism. Participation is always voluntary and participants may withdraw at any time. To learn more about the registry and sign up, you may read the consent form, enroll, and submit your information through our secure online enrollment survey. You may also call 1-888-691-1062 or email firstname.lastname@example.org for questions or assistance.
Marcus Center for Cellular Cures & Duke Center for Autism Plan Studies Evaluating Cell Therapies
Several research studies evaluating cell therapies in individuals with autism ages 18 months to seven years are currently being designed and conducted. Some of the studies plan to continue during the pandemic, and our research team has worked on modifying procedures based on institutional policies, state guidance, and federal regulations to enhance safety in light of the COVID-19 pandemic.The IMPACT Study is a phase II randomized (flip of a coin), blinded, placebo-controlled clinical trial testing whether an intravenous infusion of hCT-MSCs helps decrease symptoms of Autism in young children. All participants will receive 2 IV infusions given six months apart. One infusion will be hCT-MSCs, and one will be an inactive placebo product. Participants and families will not know the order in which the products are given. Participant reimbursement will be provided after the baseline visit and the one year remote visit.
Initial requirements include*: 4 to 7 years of age, Diagnosis of Autism Spectrum Disorder, Able to cooperate with testing. *Other requirements will apply. Interested in participating? Contact the Duke Cellular Therapy Team at: email@example.com. Principal Investigators: Drs. Joanne Kurtzberg, Geraldine Dawson and Jessica Sun.
Events & Resources
COVID-19 Art – View the World during the Pandemic through the Eyes of Those with ASD and ADHD
Visit the Center’s online COVID-19-Art Gallery where artists of all ages and their siblings tapped into their talents to share unique responses to, “What makes you happy, sad, or angry?” during this challenging time. We welcome new submissions! Submit artwork to firstname.lastname@example.org. Questions? Contact email@example.com.
Duke Autism Center Shares COVID-19 Resources for individuals with ASD and their families
The Center continually updates our Resources for Persons with Autism, Families, and Caregivers related to COVID-19. Bookmark the Center’s website to check back often for autism-specific information and resources developed by our study investigators and clinicians, and gathered from national and state partners. Follow and Like us on Facebook and Twitter, too, where favorites are spotlighted.
Global Advocate, Author, & Educator Coming in Spring 2021
We are thrilled that this year's Autism Awareness Month event speaker, Morénike Giwa Onaiwu, has agreed be a part of our April 2021 event. Morénike is a global self-advocate, educator, and parent on the autism spectrum, and editor of All the Weight of Our Dreams, an anthology of art and writing entirely by autistic people of color. Date and details will be shared on social media, on our website and in upcoming issues of Connections.
Coming Soon! Don’t miss our upcoming events!
2020 Music 2 the Max – Back by popular demand! Join Duke's Musician in Residence and Semans/Byrd Performing Arts Coordinator William Dawson for a free music and learning experience for children. All are welcome! Follow us on Facebook to stay updated and get info about registration.
"Dr. Scott & Dr. Lauren’s Tips for Families Living with COVID, ADHD & ASD" – Join Duke ADHD Program Director Scott Kollins, Ph.D., and Duke Autism Center of Excellence researcher and Child Psychiatrist Lauren Franz, MBChB, MPH, as they share another installment of their popular video series providing advice on structure, home learning, sleep, and self-care.Children diagnosed with ASD and ADHD are the focus of the Center’s National Institutes of Health funded A+ Study. Miss the April video? You can view it here.
Early Intervention Strategies for Autism Spectrum Disorder – Live Webinar Series -This four-part webinar series, presented by the Wake AHEC provides early intervention strategies for those working with young children diagnosed with or at risk for ASD. The featured speaker is Dr. Lauren Franz, MBChB, MPH, a Child Psychiatrist and a lead investigator for the Duke Autism Center of Excellence. Register at wakeahec.org.