Looking Ahead: A message from Director Geraldine Dawson, Ph.D.
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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. You can view my latest message to families, on our website here.
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 in 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 to help people with autism spectrum disorder (ASD) live their lives and contribute to society to their fullest potential. We hope you enjoy reading this issue of our Connections 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.
Sincerely,
Geri Dawson, Director
Duke Center for Autism and Brain Development
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Center Leadership Meets with Health Policy Advisor to the Congressional Coalition for Autism Research & Education
Shares concerns over access and availability of services during pandemic
Kate Werley, health policy advisor for Congressman Mike Doyle (D-PA), met with Duke Center for Autism Director Geraldine Dawson, Ph.D., and Child and Adolescent Psychiatrist and Duke Autism Center of Excellence Investigator 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.
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Duke Center for Autism and Brain Development and Duke ADHD Program efforts to serve the community, continue cutting-edge research, and provide high-quality telehealth clinical care are going strong, even during the COVID-19 pandemic! Here, Duke Center for Autism Director Geraldine Dawson, Ph.D., and Duke ADHD Program Director Scott Kollins, Ph.D., led the weekly, Zoom meeting for nearly 100 faculty and staff, sharing new ways studies and services are pivoting to serve the community.
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Center Researchers Share Global Impact of COVID-19 Research
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Marbles Partnership Enhances Sensory-friendly Experiences
The Duke 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, theater, 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 for Autism 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.
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Clinic Spotlight
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Center Clinicians Pivot to Teleheath
Keeping Diagnostic Assessments Going
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Rachel Aiello, Ph.D.,
Duke Autism Clinic
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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, Duke Center for Autism clinicians, as part of research and clinical services, have rallied to adapt clinical practices to the necessary physical distancing constraints of the COVID-19 crisis. Rachel Aiello, Ph.D., a psychologist with the Duke Autism Clinic, 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-ASD-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."
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"Our quick adoption of telehealth services provided a new platform to connect. As a child psychiatrist, telehealth allows me to see patients from the Blue Ridge Mountains to the Atlantic coast without any families driving hundreds of miles for an appointment. While I miss the face-to-face interactions and the 'kids-say-the darndest-things' moments between appointments and in the hallways - the moments that could re-energize and reaffirm the humanity of our profession. I've found a new appreciation for seeing kids while they are playing with their favorite Legos or while parents are cooking lunch. I hope telehealth continues to be available as a tool. It can reduce barriers to care and allow us as health professionals a place in families' homes." - Nathan Copeland, M.D.
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Research Spotlight
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Cord Blood Study Provides Insights on Potential Benefits for Autism Treatment
In the Duke ACT research study, funded by The Marcus Foundation, Duke Center for Autism and Brain Development 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. We want to thank all of the children and caregivers who participated in this study. Without your partnership, studies like this, designed to test new treatments for autism, would not be possible. Read more on the Duke University School of Medicine website, and in the published findings in The Journal of Pediatrics.
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Center Researchers Support Caregivers Across the Globe
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 adapted 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.
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Join Our Autism Research Family - Get Connected with Research Opportunities
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 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 autismresearch@duke.edu for questions or assistance.
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Marcus Center for Cellular Cures & Duke Center for Autism Conducting 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*: 1) 4 to 7 years of age, 2) Diagnosis of Autism Spectrum Disorder, 3) Able to cooperate with testing. *Other requirements will apply. Interested in participating? Contact the Duke Cellular Therapy Team at: cordbloodtherapyinfo@dm.duke.edu. Principal Investigators: Drs. Joanne Kurtzberg, Geraldine Dawson and Jessica Sun.
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Coming Events & New Resources
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COVID-19 Resources for People with ASD & Families
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Dr. Scott & Dr. Lauren's
"Living with COVID-19,
ASD & ADHD"
Episode 2 - Back to School
Join Duke ADHD Program Director Scott Kollins, Ph.D., and Duke Center for Autism Child and Adolescent Psychiatrist Lauren Franz, MBChB, MPH, as they share another installment of their popular, 20-minute video series providing advice on structure, home learning, IEPs, and sleep - Just in time for back-to-school! Children diagnosed with ASD and ADHD are the focus of the Center's NIH-funded Autism Center of Excellence study. The recorded video goes live next week on our website! Miss the first episode? View it here.
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COVID-19 Art Gallery - View the World during the Pandemic through the Eyes of Those with ASD & ADHD
Welcoming new submissions now!
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Morenike and her children
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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. Dates and details will be shared on social media, on our website and in upcoming issues of Connections.
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Join us for Music 2 the Max 2020
Back by popular demand! Join Duke 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 information about registration.
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"Early Intervention Strategies for ASD"- Wake AHEC Live Webinar Series for pros working with children - CMEs provided
Are you a speech-language pathologist, occupational therapist, social worker, educator, or another professional working with young children diagnosed with or at risk for ASD? This four-part webinar series, presented by the Wake Area Health Education Center provides early intervention strategies for those working with young children. CMEs are provided. The featured speaker is Dr. Lauren Franz, MBChB, MPH, a child and adolescent psychiatrist and a lead investigator for the Duke Autism Center of Excellence. Register at wakeahec.org.
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