Duke Center for Autism and Brain Development 2021 Impact Report Letter from the Director
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Research Highlights Understanding the Pandemic’s Effects on Children’s Mental Health and Behavior
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Innovative Solutions Aim to Improve Screening and Diagnosis, Reduce Healthcare Disparities
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Does This Student Have a Diagnosis of Autism? What Matters May Surprise You
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Center Partners on Largest Autism Research Grant in National Institutes of Health History
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Experts in Autism and ADHD Join Forces to Address the Unique Needs of Neurodiverse Children
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Using Data Science to Detect Autism in the First Year of Life
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New Research Suggests Early Intervention Based on the Early Start Denver Model Promotes Brain Activity Supporting Imitation
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Hormone Widely Used as an Autism Treatment Shows No Benefit
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Novel Techniques Unveil How Altered Genes Affect Pathways in the Brain
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By the Numbers Duke Center for Autism and Brain Development Highlights July 2020–June 2021
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Clinical Care Agile Shift to Telehealth Brings Silver Linings
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Clinic Spotlight
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Training A Lost Generation?
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Trainee Spotlight
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Advocacy & Community Cultivating Diverse Voices to Create Meaningful Research
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Duke Center for Autism Stays Closely Connected in a Year of Distancing
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Duke Center for Autism and Brain Development Exchange on Erwin 2608 Erwin Road, Suite 300 Durham, NC 27705 Hock Plaza 2424 Erwin Road, Suite 501 Durham, NC 27705 For Clinical Appointments: 919.681.7148 For Research Inquiries: 888.691.1062 autismresearch@dm.duke.edu Website: www.autismcenter.duke.edu Twitter: @DukeAutismCtr Facebook: @dukeautismcenter Insta: @dukeautismctr
Director Geraldine Dawson, Ph.D. William Cleland Distinguished Professor Department of Psychiatry and Behavioral Sciences Associate Director Nicole Heilbron, Ph.D. Associate Professor Department of Psychiatry and Behavioral Sciences Associate Director Linmarie Sikich, M.D. Associate Consulting Professor Department of Psychiatry and Behavioral Sciences Director, Early Intervention Services Jill Howard, Ph.D. Assistant Professor Department of Psychiatry and Behavioral Sciences Director of Operations Samantha Bowen, Ph.D. Director, Data Management and Analysis Core Scott Compton, Ph.D. Associate Professor Department of Psychiatry and Behavioral Sciences Liaison, Duke Pediatric Primary Care Jeffrey Baker, M.D., Ph.D. Professor Department of Pediatrics
Dear Friends and Colleagues, We are proud to share highlights of our research, clinical services, training activities, and community outreach, which remain active and impactful despite the challenges of the pandemic. In fact, the unique challenges of the pandemic have provided insights about our systems of care for people on the autism spectrum and motivated us to adapt in new and unexpected ways. For one, the pandemic has revealed healthcare system inequities that favor urban, English speaking, economically advantaged, educated families who have greater access to medical care. In reality, autism affects all ethnic, cultural, and socioeconomic groups. Diagnosis can be made reliably as early as age two but most often is made at age four or later. Typically, children of color and in low-resource communities are diagnosed much later. Our research has been aimed at closing this gap by developing innovative, objective methods for autism screening that can reduce healthcare disparities. Evidence-based early interventions improve learning and social and communication skills, and positively impact educational success. However, these services can only start once a diagnosis is made, and then, only if the services are attainable, affordable, and provided within a system that can adapt to meet unique family situations and individual needs. Our research discoveries play a pivotal role in finding solutions to address healthcare disparities, increase access to screening and diagnosis, and create innovative, affordable ways to expand evaluation and treatment service delivery. With funding from the National Institutes of Health Autism Centers of Excellence (ACE), we are working to address these complex challenges. In this year’s Impact Report, we highlight our interdisciplinary team of neurobiologists, computer engineers, data scientists, psychiatrists, psychologists, and pediatricians conducting groundbreaking research to create more accurate and scalable methods of early detection, test new treatments, and make discoveries in genetic and molecular science. Now, perhaps more than ever before, our research discoveries must inform public policies that support healthcare options and systems that prioritize historically underrepresented populations, the autism community, and families living in low-resource communities. This year, we expanded our services, adapted multiple research study protocols to virtual platforms, and secured funding to investigate the effects of the pandemic on the autism community. We believe that meaningful scientific discoveries are made when we empower families, self-advocates, and community stakeholders to share their experiences to help shape research study design, goals, and dissemination efforts. This year we established our Duke ACE Community Engagement Advisory Board, a stakeholder group including autism self-advocates, educators, business leaders, family members, disability rights leaders, rural health providers, and community leaders, who help shape the priorities of our research. This board joins our ACE External Advisory Committee, an external team of autism research experts, selfadvocates, and parents, who have informed and advised our research for the past several years. We were pleased that we could use virtual platforms to offer several community outreach events, including our Autism Acceptance Month celebration and our monthly Autism Speaker Series, which have been popular with staff, faculty, and students at Duke University, as well as with the broader community worldwide. I hope you enjoy this year’s Impact Report. You will see that our work is a collaboration among families, scientists, advocates, partners, and organizations. Our hope is that the center’s work will make a meaningful difference in lives of those on the autism spectrum—as well as those who care for and care about them. Thank you for your continued support.
Geraldine Dawson, Ph.D. Director William Cleland Distinguished Professor Department of Psychiatry and Behavioral Sciences Duke University School of Medicine
Research Understanding the Pandemic’s Effects on Children’s Mental Health and Behavior
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t’s no surprise that the COVID-19 pandemic has profoundly impacted children’s lives worldwide; however, surveys show that children with neurodevelopmental conditions and their families have been disproportionally negatively affected, experiencing more emotional and behavioral problems during this difficult time. Changes in familiar routines, disruptions in treatment services and supports, and online schooling issues combined to disproportionately stress autistic individuals and their families.
“Our team is eager to support our families throughout the pandemic,” said Duke Center for Autism psychologist Naomi Davis, Ph.D., an investigator on the center’s National Institutes of Health (NIH) Autism Center of Excellence (ACE) study. “We remain incredibly grateful to those families who have participated in our research projects during the past year, despite the many added challenges associated with the pandemic. We have also been inspired by families’ commitment to partnering with our center to conduct research that will improve the lives of those on the spectrum.” In keeping with the center’s mission to support families in the research community, the research team has been working to better understand
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the impact of COVID-19 on the experience of families of young children. Marika Coffman, Ph.D., psychologist at the Duke Center for Autism, is leading a research investigation funded by the Autism Science Foundation to study whether autistic children who have been diagnosed with both autism and ADHD or both autism and anxiety are having more difficulty coping with the pandemic than children with autism alone.
“We are committed to contributing to scientific understanding about how pandemic interruptions and disruption directly impacted our research participants and their families.” Marika Coffman, Ph.D.
Changes in familiar routines, disruptions in treatment services and supports, and online schooling issues combined to disproportionately stress autistic individuals and their families. In another study, funded by the NIH, the center’s investigators are reviewing survey data completed by parents of children participating in the research program. Surveys from two groups are included and compared: Families who enrolled in the study before the start of the pandemic and those who enrolled during the initial months of the pandemic. Parents responded to questions about their emotions, such as challenges they might be experiencing in their role as a parent and feeling overwhelmed by parenting responsibilities, as well as questions about experiences of their children and balancing parenting with other aspects of life. Initial review of the data shows that families of toddlers reported significantly more stress specific to parenting during the pandemic as compared to families of toddlers surveyed before the pandemic. This was especially true for parents of autistic toddlers. The team is studying this data further, to understand specifically how the pandemic affected
“We remain incredibly grateful to those families who have participated in our research projects during the past year, despite the many added challenges associated with the pandemic.”
young autistic children’s behaviors, interactions, and progress. “We are committed to contributing to scientific understanding about how pandemic interruptions and disruption directly affect young children and their families,” said Coffman. “What we learn can help inform improvements to services and interventions to help autistic children build resilience.”
Here’s an Idea! For caregivers struggling with big questions during the COVID-19 pandemic, Duke Autism Clinic providers created the new Here’s an Idea! “mini video” series featuring center child development experts sharing practical tips in response to challenging situations facing neurodiverse individuals and those who care for them. In the threeminute videos, shared across social media platforms on the Duke Center for Autism and Brain Development YouTube channel, real-world advice is geared specifically to four audiences: parents/caregivers of young children with neurodiversities, parents/caregivers of neurodiverse teens, neurodiverse adults, and those who care about or work with neurodiverse individuals. Most-watched episodes include “Big Changes,” “Staying on Track Remotely,” and “Dealing with Disappointment.”
Naomi Davis, Ph.D.
Impact Report 2021
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Research
Innovative Digital Solutions Aim to Improve Screening and Diagnosis, Reduce Healthcare Disparities Early identification of autism is key, but the journey to diagnosis is not equal for everyone.
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or many families, the road from initial concern to evaluation to autism diagnosis can be confusing, slow, and riddled with delays. Approved screening tools, although effective, are subjective measures, partially reliant upon caregiver questionnaires that have been shown to underperform with people of color, those with literacy barriers, and those who have lower educational backgrounds. Once a referral is made, a trained child development expert conducts a diagnostic assessment relying on observations of the child’s behavior during semi-standardized behavioral tasks. Access to licensed diagnosticians can be extremely limited, and in many rural and low-resource areas—including in the United States—there are no licensed providers.
Duke Center for Autism and Brain Development investigators are working to reduce these disparities with digital, accessible, and userfriendly autism detection tools that improve screening techniques, open doors to access in low-resource communities, and help doctors track children’s progress. “Today the playing field is not level. Those who gain easier access to screening tools and clinical diagnosis get the jump on evidence-based interventions and the benefits they bring,” said Duke Center for Autism Director Geraldine Dawson, Ph.D. “With creative, cross-disciplinary research, we can find innovative solutions that bring about equal access and reduce healthcare disparities.”
A digital health approach to autism screening eye gaze facial landmarks expression social communication head turn/response to name
Child watches strategically designed brief movies on a smartphone or tablet
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Child’s responses to the movies are recorded and automatically quantified via computer vision analysis.
Machine learning uses multiple behaviors to create an objective screening algorithm.
Infants on the autism spectrum tend to pay more attention to the world of objects. During the infant-toddler stage, they show more difficulty sustaining attention and their “gaze duration” differs with various visual stimuli.
Tracking Eye-gaze in Toddlers “One of the first indications of autism is that an infant does not pay attention to the social world,” Dawson notes. “How young children visually engage with others in social settings affects how brain circuits responsible for social interactions develop. When these circuits don’t develop as they should, it can lead to increased challenges for successful social engagement and communication later on.” Infants on the autism spectrum tend to pay more attention to the world of objects. During the infant-toddler stage, they show more difficulty
sustaining attention, and their “gaze duration” differs with various visual stimuli. Leveraging this knowledge, a transdisciplinary team of scientists including Dawson, Guillermo Sapiro, Ph.D., James B. Duke Distinguished Professor of Electrical and Computer Engineering, and Zhuoqing Chang, Ph.D., postdoctoral associate in Duke University’s Pratt School of Engineering, developed a digital app that successfully detects this telltale characteristic of autism in young children and could one day become an inexpensive, scalable early screening tool. In a study published in the Journal of the American Medical Association Pediatrics, the team showed that the app successfully measured Impact Report 2021
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Research In a sample clip from one of the digital app’s strategically designed movies, a man blows bubbles in the same frame that shows an inanimate object. The Duke University research team created the app to assess the eye-gaze patterns of children while they watched short movies on an iPhone or iPad, then applied computer vision analysis and machine learning to determine whether the child was looking more often at the person in the video, or objects.
whether a young child is more interested in looking at people or objects. The innovative, user-friendly app assesses the eye-gaze patterns of children as they watch short movies on an iPhone or iPad, then applies computer vision analysis and machine learning technology to determine what the child is paying attention to. The researchers worked with clinicians in pediatric primary care clinics to make sure the research is applicable to real world settings, such as an exam room, not just controlled lab environments. Eye tracking has been used previously to assess gaze patterns in children. However, it has required special equipment and expertise to analyze the gaze patterns. This app, which takes less than 10 minutes to administer and uses the front-facing camera to record the child’s behavior, only requires an iPhone or iPad, making it readily accessible to primary care clinics in rural or economically disadvantaged communities and useable in home settings.
It Makes Sense to Know about Your Child The eye-gaze tracking app is at the heart of the center’s Duke Sense to Know (S2K) Study, funded by the National Institutes of Mental Health, and currently underway. For the multi-year study, a multidisciplinary team is investigating the appbased assessment’s ability to identify differences in infants who are later diagnosed as being on the autism spectrum or as having neurodevelopmental conditions. In this longitudinal study, hundreds of infants are using the app, which records the baby’s behaviors, such as attention span, motor skills, emotional expressiveness, vocalizing, and interest in social cues. Using machine learning techniques, the team’s computer scientists analyze the videos 10
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of the child’s behavior to understand and compare eye-gaze and behavioral patterns. “We hope that this technology will eventually provide greater access to autism screening, which is an essential first step to intervention. Our long-term goal is to create a well-validated, easy-to-use app that providers and caregivers can download and use, either in a regular clinic or home setting,” Dawson said. “We have additional steps to take, but our research suggests it might one day be possible.” Chang Z, Di Martino JM, Aiello R, Baker J, Carpenter K, Compton S, Davis N, Eichner B, Espinosa S, Flowers J, Franz L, Harris A, Howard J, Perochon S, Perrin EM, Krishnappa Babu PR, Spanos M, Sullivan C, Walter BK, Kollins SH, Dawson G, Sapiro G. Computational methods to measure patterns of gaze in toddlers with autism spectrum disorder. JAMA Pediatr. 2021 Aug 1;175(8):827-836.
Does This Student Have a Diagnosis of Autism? What Matters May Surprise You
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t is well established that autistic children have unique ways of learning which often require adaptations to the classroom and teaching methods. New research suggests that in North Carolina, race, geography, and community resources influence whether a child is classified as having a diagnosis of autism versus developmental delay, putting children on different educational trajectories that could have lifelong effects. Duke Center for Autism and Brain Development investigators Drs. Lauren Franz, Jill Howard, and Gary Maslow, along with Duke Global Health Institute’s Dr. Eunsoo Timothy Kim and Dr. Danai Kasambira Fannin of NC Central University, published research showing that NC students’ autism or developmental delay classification is influenced by the state’s urban-rural resource divide, the student’s race and/or ethnicity, and the availability of local resources.
“Black children living in rural, lower-resource communities were more often diagnosed with intellectual or developmental disability, while urban, white children more often received an autism diagnosis,” said Fannin. “These differences may point to disparities that could have significant policy and educational implications.” “Timing matters. Misclassification means missed opportunities,” said Franz. “We know that behavioral interventions and appropriate educational supports can improve social communication and language skills for autistic kids. Starting services and supports when a child is younger can make a dramatic difference, for life.”
“Black children living in rural, lower-resource communities were more often diagnosed with intellectual or developmental disability, while urban, white children more often received an autism diagnosis. These differences may point to disparities that could have significant policy and educational implications.” Danai Kasambira Fannin, Ph.D.
Kim ET, Franz L, Fannin DK, Howard J, Maslow G. Educational classifications of autism spectrum disorder and intellectual disability among school-aged children in North Carolina: Associations with race, rurality, and resource availability. Autism Res. 2021 May;14(5):1046-1060.
Center Partners on Largest Autism Research Grant in National Institutes of Health History
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n autism, a key ingredient in both diagnosis and monitoring treatment progress comes from parent, clinician, and caregiver observations, sharing concerns about developmental milestones using standardized questionnaires. Without validated scientific indices—replicable and quantifiable biological “markers”—decisions about treatments and progress are heavily dependent upon these intrinsically subjective observations. To help find a solution, the National Institutes of Health (NIH) has invested $60 million in the Autism Biomarkers Consortium for Clinical Trials (ABC-CT), the largest autism research grant in its history, to encourage scientific progress toward measurable biomarkers that track improvements in brain function. In the initial five years of the ABC-CT, the Duke Center for Autism and Brain Development, in collaboration with Yale, Harvard,
UCLA, and the University of Washington, helped to find the first two Food and Drug Administrationvalidated biomarkers—an electroencephalographic (EEG) recording and an eye-tracking measure—that can be used to monitor changes in brain function and attention. Renewed funding for an additional five years will allow the multi-site team to follow into adolescence a group of autistic children who were originally evaluated when they were school-age to see how the biomarkers track with children’s development. They will also test the same biomarkers with autistic children who are preschool age. “Having reliable, objective ways of measuring whether a treatment is working is essential to developing new and more effective autism treatments,” said Duke Center for Autism Director Geraldine Dawson, Ph.D.
Impact Report 2021
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Experts in Autism and ADHD Join Forces to Address the Unique Needs of Neurodiverse Children
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t the Duke Autism Clinic, clinicians are frequently asked by parents, “Does my child have autism, attention deficit hyperactivity disorder (ADHD), or both?” The question is common because of the remarkably high degree of overlap between the two conditions; approximately 50% of people on the autism spectrum also have ADHD. Knowing whether a child has one or both will shape the clinician’s recommendations with respect to the type of educational program and intervention approach that will be most helpful.
Tackling Three Big Questions that Have Real-world Impacts Autistic children primarily have challenges navigating the social world, whereas children with ADHD often have difficulty focusing their attention, which in turn can affect their social relationships. It is not surprising that distinguishing between the two conditions can be challenging, especially when the child is young. In fact, when autistic children also have ADHD, they tend to receive their autism diagnosis much later in life, missing out on years of benefits that early interventions are proven to provide. With a $12.5 million grant from the National Institutes of Health (NIH) Autism Centers of Excellence (ACE) program, scientists at the Duke Center for Autism and Brain Development are developing innovative screening tools, diagnostic methods, and intervention approaches to ensure autistic children with ADHD are recognized early and have access to the interventions they may need. The first question: Why are autistic children who have ADHD missed during their routine, early screening for autism? For four years, a research 12
Duke Center for Autism and Brain Development
During the pandemic, the Duke Autism Center of Excellence study continued by adjusting study protocols to allow for intervention services in a telehealth platform.
team comprised of Drs. Geraldine Dawson, Scott Kollins, Naomi Davis, Eliana Perrin, and several other Duke University faculty members, has followed more than 3,000 toddlers from their first autism screening at their 18-month well-child visit in four Duke Pediatric Primary Care Clinics. Working in close partnership with the primary care providers, the center diagnostic team offered all those who did not “pass” the autism screening (considered more likely to be diagnosed with autism) a diagnostic evaluation. Once evaluated, the children were followed and seen again at three years of age when a reliable diagnosis of ADHD can be made. The researchers are then looking backwards to evaluate how current autism screening tools could be improved to better detect toddlers with both autism and ADHD. Discoveries are helping to illuminate a number of novel approaches to early screening, such as the use of a digital app that may help improve early identification of children with both conditions [see story on page 8].
The second question: How can we adjust our current diagnostic methods so they can better discern whether a young child has both autism and ADHD? As part of the NIH ACE research program, Drs. Naomi Davis, Rachel Aiello, Julia Schechter, Saritha Vermeer, and other center clinicians have evaluated hundreds of preschoolers for autism and ADHD, using evidence-based, frequently used clinical evaluation methods. Data gathered is helping to inform new diagnostic guidelines to help child development experts worldwide adjust their practices to accurately diagnose children with both autism and ADHD. The third question: How can we address the unique needs of autistic children who also have ADHD? A research team led by Drs. Lauren Franz, Jill Howard, Linmarie Sikich, and Tara Chandrasekhar is evaluating a new early intervention model that could address the distinctive needs of these children with autism and ADHD. To date, there have been well-validated treatment approaches that address the needs of each individual diagnosis, but none that address the full range of needs of children with both. To meet the unique needs of these children, the research team has adapted and is testing the effectiveness of a naturalistic developmental behavioral intervention, the Early Start Denver Model, developed by Dawson and Sally Rogers, Ph.D., professor emeritus at the University of California Davis MIND Institute.
“This work is crucial because autistic children with ADHD tend to have more difficulties in school and in developing peer relationships than autistic children or those who have ADHD only,” said Jill Howard, Ph.D., an investigator on the NIH ACE study. “We need to find specialized ways to intervene for those families who are asking for our help.”
Duke ACE Advisory Committee The Duke Center for Autism and Brain Development is proud to be a National Institutes of Health Autism Center of Excellence (ACE). This designation, only given to a handful of universities, has provided funding for several studies aimed at developing improved ways to detect, diagnose and treat autism and attention deficit hyperactivity disorder (ADHD). The Duke ACE Advisory Committee members include parents, self-advocates, and leaders in the fields of autism and ADHD research. They serve as advisors to investigators, providing insights across the multiple studies that leverage the ACE award. Russell Barkley, Ph.D. Clinical Professor of Psychiatry Virginia Commonwealth University Medical Center Morénike Giwa Onaiwu Author, Advocate, Speaker Member, Interagency Autism Coordinating Committee Shelagh Kenney Parent Advocate Deputy Director The Center for Death Penalty Litigation Catherine Lord, Ph.D. George Tarjan Distinguished Professor of Psychiatry Semel Institute of Neuroscience and Human Behavior Professor of Human Development and Psychology David Geffen School of Medicine, UCLA
“This work is crucial because autistic children with ADHD tend to have more difficulties in school and in developing peer relationships than autistic children or those who have ADHD only.”
David Mandell, Sc.D. Kenneth E. Appel Professor of Psychiatry Director, Penn Center for Mental Health Perelman School of Medicine University of Pennsylvania Craig Newschaffer, Ph.D. Raymond E. and Erin Stuart Schultz Dean Professor of Biobehavioral Health Penn State College of Health and Human Development
Jill Howard, Ph.D. Impact Report 2021
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Using Data Science to Detect Autism in the First Year of Life
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ith an autism diagnosis, sooner really is better than later. When young children can access behavioral interventions, science tells us that their developmental outcomes improve, including improvements in social skills, language, and cognitive skills. Today, the mean age of autism diagnosis in the U.S. is 51 months, even though autism can be reliably diagnosed in toddlers at 18–24 months. About 50% of children receiving an autism diagnosis also have symptoms of attention deficit hyperactivity disorder (ADHD). Can we harness the power of data science to detect risk factors so children get the chance of an earlier diagnosis? In a Duke Center for Autism and Brain Development study, researchers used ten years of data collected from 30,000 patients’ electronic health records, some of whom were diagnosed with autism and/or ADHD. The researchers found that by examining a baby’s pattern of health care during the first year of life, before a diagnosis was made, it was possible to predict whether an infant would later be diagnosed with autism and/or ADHD. The study, appearing in the journal Scientific Reports, provides evidence that healthcare utilization patterns in a baby’s first year can be gleaned from electronic medical records, serving as a roadmap to provide timely diagnoses and treatments that could improve outcomes and reduce healthcare costs.
“This study provides evidence that autistic children who have ADHD are on a different path from the beginning,” said lead author Matthew Engelhard, M.D., Ph.D., assistant professor of biostatistics and bioinformatics at Duke University. “We have known that children with these diagnoses have 14
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“This study provides evidence that autistic children who have ADHD are on a different path from the beginning. This could provide an opportunity to intervene sooner.” Matthew Engelhard, M.D., Ph.D.
more interactions with the healthcare system after they’ve been diagnosed, but this indicates that distinctive patterns of utilization begin early in these children’s lives. This could provide an opportunity to intervene sooner.” For the infants who were later found to have one or both of the diagnoses, their births tended to result in longer hospital stays compared to other children. Autistic children were three times more likely to be treated by an endocrinological, gastroenterological, neurological/sleep, cardiac, audiological, or ophthalmological specialist. Children who were later found to have ADHD had more procedures, more hospital admissions, and more emergency department visits.
The study, appearing in the journal Scientific Reports, provides evidence that healthcare utilization patterns in a baby’s first year can be gleaned from electronic medical records, serving as a roadmap to provide timely diagnoses and treatments that could improve outcomes and reduce health care costs.
7 Adjusted Odds Ratio
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Researchers used ten years of data collected from 30,000 patients’ electronic health records and found that healthcare patterns for babies later diagnosed with autism, ADHD, or both, had unique utilization patterns, suggesting that it may be possible to identify autism and ADHD earlier than previously thought. Autistic children were three times more likely to be treated by an endocrinological, gastroenterological, neurological/sleep, cardiac, audiological, or ophthalmological specialist. The figure above is adapted from the journal article in Scientific Reports, October 19, 2020.
“Understanding that there are signals available in a Engelhard MM, Berchuck SI, Garg J, Henao R, Olson A, child’s electronic health record could help lead to Rusincovitch S, Dawson G, Kollins SH. Health system utilization earlier detection and more targeted therapies,” said before age 1 among children later diagnosed with autism or Engelhard. “We plan to conduct further analyses ADHD. Sci Rep. 2020 Oct 19;10(1):17677. to explore fully what specific health concerns prompted the extra doctor and hospital visits.”
Impact Report 2021
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New Research Suggests Early Intervention Based on the Early Start Denver Model Promotes Brain Activity Supporting Imitation
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ome autistic children often have difficulty imitating others. Imitation plays a big role in how individuals learn to interact with others. Through imitation, we learn about others’ facial expressions, gestures, and other nonverbal behaviors that are important for communication and social interaction. Thus, it is not surprising that helping autistic children learn to imitate others can have a positive influence on their social development. In a study published in the Journal of Autism and Developmental Disorders, Duke Center for Autism and Brain Development Director Geraldine Dawson, Ph.D., and her co-investigators showed that children who receive an autism intervention called the Early Start Denver Model (ESDM) displayed changes in brain activity in a part of the brain dedicated to imitation, the “Mirror Neuron System.” Brain cells in this area “light up” when we imitate other people. The investigators used electroencephalography (EEG) to measure activity of the Mirror Neuron System and found that autistic children who received the ESDM intervention
“ESDM is focused on the caregiverchild interaction and helps promote young children’s developmental rates in cognitive, social-emotional, adaptive, and language skills.” Geraldine Dawson, Ph.D. 16
Duke Center for Autism and Brain Development
Imitation plays a big role in how individuals learn to interact. Through imitation, we learn about others’ facial expressions, gestures, and other nonverbal behaviors that are important for communication and social interaction.
learned to imitate others and also showed increased activity of the Mirror Neuron System. ESDM, a naturalistic developmental behavioral intervention designed by Dawson and Sally Rogers, Ph.D., leverages understanding about child development and learning to improve developmental outcomes for autistic children. “ESDM is focused on the caregiver-child interaction and helps promote young children’s developmental rates in cognitive, social-emotional, adaptive, and language skills,” explained Dawson. “At the center, we provide ESDM and other evidence-based interventions to help each individual and their family address their unique needs and goals.” Publicly available ESDM caregiver-coaching modules are offered on the center’s website to all families and providers. Aaronson B, Estes A, Rogers SJ, Dawson G, Bernier R. The Early Start Denver Model intervention and mu rhythm attenuation in autism spectrum disorders. J Autism Dev Disord. 2021 Jul 26; Epub ahead of print.
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Hormone Widely Used as an Autism Treatment Shows No Benefit Multicenter study finds that oxytocin is safe, but ineffective at boosting social skills among autistic children
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xytocin, a naturally occurring hormone that acts as a chemical messenger in the brain, showed no evidence of helping autistic children to gain social skills, according to a large National Institutes of Health (NIH)-funded study led by Duke Center for Autism and Brain Development psychiatrist Linmarie Sikich, M.D., an associate consulting professor for Duke University School of Medicine. While disappointing for those holding hope that oxytocin could be beneficial, the long-awaited finding, which appeared in the New England Journal of Medicine, provides clarity for a treatment that has shown mixed outcomes in smaller, less robust studies.
“There was a great deal of hope that oxytocin would be effective,” said Sikich. “All of us on the study team were hugely disappointed, but oxytocin does not appear to improve social abilities in autistic people.” Oxytocin is typically used to induce labor, but because of its activity in the brain, it has been investigated as a treatment for autism. Evidence has been conflicting, with several smaller studies suggesting it improved social and cognitive function among some children on the autism spectrum, while other studies showed no benefit. With funding from the NIH, the research team designed the multi-site trial to provide the best evidence yet about whether oxytocin was a safe and effective treatment for autistic children. The study aimed to see if the regimen of oxytocin would have a measurable impact on the children’s social abilities based on screenings and assessments at the start of the trial, midway through the study, and at the end. While the oxytocin was well tolerated and had few side effects, it showed no significant benefit among the group of children who received it compared to those who received the placebo. “This work underscores our commitment to rigorous research to support families making critical decisions,”
“This work underscores our commitment to rigorous research to support families making critical decisions. Parents and caregivers deserve strong evidence about the safety and benefit of new treatments before they are offered as solutions.” Linmarie Sikich, M.D. explained Sikich. “Thousands of autistic children have been prescribed intranasal oxytocin before it was adequately tested. Now, we have data showing it is safe. Parents and caregivers deserve strong evidence about the safety and benefit of new treatments before they are offered as solutions.” She explained that no further study is likely of oxytocin, given the negative findings. “Our consensus as investigators is that there is no evidence in this large study that is strong enough to justify more investigation of oxytocin as a general treatment for autism,” said Sikich. “We will continue to examine additional data gathered in the study to see if there are biologic markers or concurrent therapies that are associated specifically with response to oxytocin and not with response to placebo.” Sikich L, Kolevzon A, King BH, McDougle CJ, Sanders KB, Kim SJ, Spanos M, Chandrasekhar T, Trelles MDP, Rockhill CM, Palumbo ML, Witters Cundiff A, et al. Intranasal oxytocin in children and adolescents with autism spectrum disorder. N Engl J Med. 2021 Oct 14;385(16):1462-1473. Impact Report 2021
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Novel Techniques Unveil How Altered Genes Affect Pathways in the Brain
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utism falls on a spectrum, meaning its symptoms show up in a wide variety of ways around its hallmark differences in social and communication abilities. Scientists understand a great deal about how these develop within biological systems and have linked about 100 genes to autism. In fact, about 20% of autism diagnoses are the result of identifiable genetic alterations. Now, Duke Center for Autism and Brain Development investigators including Scott Soderling, Ph.D., a cell biologist, neuropsychopharmacologist William Wetsel, Ph.D., and clinical geneticist Yong-hui Jiang, M.D., Ph.D., are studying how a single genetic variant plays a major role in social and communication differences for those on the spectrum.
“We study how signaling pathways are organized and how a single genetic mutation, such as a mutation in a sodium channel gene (SCN2A), can lead to neurodevelopmental conditions, including autism,” said Soderling, the George Barth Geller Distinguished Professor for Research in Molecular Biology at Duke University. “What we are learning could set the stage to find more targeted treatments that could improve quality of life for autistic individuals.” The team is using animal genetic models and novel genome engineering techniques to understand how an SCN2A genetic mutation in humans influences molecular brain functions and alters pathways in the brain, leading to differences in social behavior, communication, and other behaviors associated with autism. The multi-year investigation could reveal novel insights into how a small, significant change in the SCN2A gene influences brain function.
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Using a gene editing technique called CRISPR (clustered regularly interspaced short palindromic repeats), the team created genetically modified animal models that carry the same Scn2a modification in mice that appears in autism in humans. Now, the researchers are assessing the behavior of the mice with modified genes, using tests designed to assess motor performance, learning and memory processes, anxiety, communication, social behavior, and repetitive behaviors. When compared to genetically typical mice, the mice with the Scn2a genetic modification performed similarly in experiments for rudimentary learning and memory. In tests designed to evoke anxiety, typical mice appeared anxious, while the mice with the Scn2a mutation did not respond to
“Every detail we analyze gets us closer to unraveling the secrets of how this gene governs complex brain mechanisms that lead to behaviors characteristic of autism.” William Wetsel, Ph.D.
Using a new gene editing approach called CRISPR (clustered regularly interspaced short palindromic repeats), the team created genetically modified animal models that carry the same Scn2a modification in mice that appears in autism in humans.
the anxiety-inducing conditions. Similarly, some autistic individuals do not show fear responses in situations that others likely would find fearful. Mice with the Scn2a genetic mutation showed differences in their communication patterns and engaged in more repetitive behaviors than animals who did not have the mutation.
“It appears that SCN2A genetic mutations in mice primarily affect communication, and this occurs more often in males than females,” said Wetsel. “Every detail we analyze gets us closer to unraveling the secrets of how this gene governs complex brain mechanisms that lead to behaviors characteristic of autism.”
Impact Report 2021
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Duke Center for Autism and Brain Development Highlights
By the Numbers Research > $33 million in total sponsored autism research funding
16 awards, including 8 led by junior faculty as principal investigators
5 clinical research studies 1 > 6,000 individuals enrolled in
Duke Autism Volunteer Research Registry
Clinical Services 5 17 diagnostic evaluations provided across all clinic and research programs
3 ,863 clinical service appointments 1 ,183 patients served in the Duke Autism Clinic 6 types of clinical intervention services offered
to autistic people from infants through young adults: caregiver coaching, early behavioral intervention, social skills training, emotional and behavioral regulation, Cognitive Behavioral Therapy, and medication management
1 2,384 telephone inquiries responded to by the clinic staff
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9 Other trainees
22 Post baccalaureate research assistants
36 Faculty
14 ndergraduate U students 34 Staff 4 Graduate students 5 Postdoctoral Students
124
Faculty/students/staff employed full or part time
2 Residents 1 Intern
3 Fellows
5 Postdoctoral trainees
4 Graduate students
14 Undergraduate students
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1 Graduate practicum student 1 Visiting graduate student 1 Graduate medical student
Trainees
6,615 Followers across Facebook, Twitter, and Instagram social media platforms Impact Report 2021
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Clinical Care
Making an impact through clinical services and treatment research
Agile Shift to Telehealth Brings Silver Linings When the COVID-19 pandemic disrupted clinical and research activities at the Duke Autism Clinic, the team transitioned quickly and adeptly to telehealth to ensure continuity of services and supports.
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egarded by many as a potential “silver lining” of the pandemic, telehealth has the potential to increase access to services and supports to rural, low-resource communities. A few significant barriers initially affected the telehealth transition, such as provider unfamiliarity with the platform and availability of diagnostic tools. For example, a widely used diagnostic autism assessment tool was found to be incompatible with remote delivery. In response, clinicians and researchers worldwide came together to compile and disseminate trainings on telehealth adaptations to assessment and treatment approaches that could overcome implementation barriers. With strong university, departmental, and center leadership; a substantial technology infrastructure; and dedicated faculty, trainees, and staff, the Duke Center for Autism and Brain Development team adapted clinical and research programs to align with emerging best practices in telehealth.
Remote Delivery Keeps Clinical Services and Research on Track Since the initial transition in March 2020, the Duke Autism Clinic has continued to offer diagnostic 22
Duke Center for Autism and Brain Development
evaluations, medication management, family and individual therapy, and care coordination services via telehealth to hundreds of families. Now, after 18 months of doing so, the advantages of delivering clinical services remotely are becoming clearer. One size does not fit all, however. Those who need in-person services can access these supports in adherence with Duke University Health System COVID-19 safety precautions. “As long as it is feasible to do so, we hope to continue to offer a telehealth option into the future,” said Jill Howard, Ph.D., director of early intervention services at the Duke Center for Autism. “It really is a ‘game-changer’ for many families who need more flexibility accessing interventions and treatment.” One of the center’s ongoing research studies, the National Institutes of Health (NIH) Autism Center of Excellence (ACE) study, is designed, in part, to examine the impact of Early Start Denver Model (ESDM)-informed caregiver coaching to support social skills in autistic children with attention deficit hyperactivity disorder (ADHD). Prior to the pandemic, all caregiver coaching sessions and assessments were conducted in-person at the center. During the temporary shutdown in the
“We had a great experience participating in the Duke A+ Study, and we are super grateful for everything that it has taught us about our son. It has really helped open doors for helping him be successful, especially with his communication skills and in interactions with our family. All of our visits were done through telehealth, which ended up being really helpful. We were in a more comfortable environment for my son and that allowed our practitioner to work with us in his typical, daily environment.” - Mother of a child on the autism spectrum
“We noticed that the telehealth platform provides families a bit of comfort, because the child and caregiver are interacting in the familiarity and comfort of their home environment. ” Maura Sabatos-DeVito, Ph.D. summer of 2020, the ACE team adapted the coaching approach and assessments for remote ESDM homebased delivery. Coaching in the child’s natural environment, typically their home, is central to ESDM principles and can further enhance the impact of this coaching approach. Live coaching through online applications such as Zoom has allowed therapists to maintain the coaching session content and structure. “We have traditionally measured behaviors in a standard lab environment. When the pandemic began, we worked creatively to adapt that task from the controlled environment of the lab to the unique environment of each participant’s home, keeping some things standard, while adjusting for individual family’s differences,” explained Maura SabatosDeVito, Ph.D., assistant professor in Psychiatry and Behavioral Sciences and an ACE study investigator. “We noticed that the telehealth platform provides families a bit of comfort, because the child and
caregiver are interacting in the familiarity and comfort of their home environment. It allows for more natural interactions between the caregiver and child. Scheduling appointments is more flexible and easier for caregivers too. As researchers, we have been able to maintain the goal of both coaching and measuring behavior in a consistent environment, which is important for observing change.” At the same time, center clinicians designed a parent coaching approach tailored to families without highspeed internet access and adapted the caregiverchild interaction task (a key outcome measure for the ACE study) for remote delivery. Doing so allowed researchers to leverage the telehealth delivery experience to explore how coaching in the child’s natural home environment affects the engagement and child support strategies caregivers put in place during joint activity routines.
Worldwide Impacts Force Creative Solutions to International Collaborations During the pandemic, Duke Center for Autism faculty continued to support research and training activities in South Africa. In a study at the Centre for Autism Research in Africa at the University of Cape Town, prior to the pandemic limits, caregiver coaching that utilizes ESDM materials and an open-access, webbased tool was adapted for non-specialist delivery. Shifting the task of coaching to non-specialists is crucial in low-resource environments because of its potential to dramatically increase reach and access to services and supports to children who would otherwise do without assistance. As with the NIH ACE study, the team in South Africa transitioned all coaching and assessments to a telehealth platform
Impact Report 2021
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Clinical Care Transitioning to Adulthood
Shifting the task of caregiver-coaching to non-specialists is key to helping increase reach and access to services and supports for families living in low-resource environments, but training their supervisors is equally important. Pictured here: Introductory Early Start Denver Model (ESDM) training participants with the Western Cape Education Department Autism Outreach Team, in Cape Town, South Africa, during summer 2021.
during the pandemic. This is particularly powerful in places such as sub-Saharan Africa, where the “digital divide” is stark. Few households own a computer, and even fewer have access to highspeed internet. However, many caregivers have smartphones and connect to the internet with prepaid mobile data. In response to the pandemic, the study team clinicians adapted coaching to leverage smartphone delivery with session materials shared via WhatsApp, a low-cost messaging software widely used in South Africa. “The pandemic has forced us into action to create strategies that increase access,” said Duke Center for Autism child and adolescent psychiatrist Lauren Franz, M.B.Ch.B., M.P.H. “We cannot let
“The pandemic has given us a remarkable opportunity to understand how telehealth can ‘fit’ diverse contexts.” Lauren Franz, M.B.Ch.B., M.P.H. 24
Duke Center for Autism and Brain Development
resource availability and access disparities direct who receives services and supports, and who does not; who gets the chance to participate in research studies and novel treatments, and who does not. The pandemic has given us a remarkable opportunity to understand how telehealth can ‘fit’ diverse contexts. We can leverage low-cost apps to keep necessary supports in place and still ensure valid scientific results. These fresh ideas and new approaches can facilitate development of new strategies with broad global impact.”
“Tips for Families Living with COVID, ADHD & ASD” Video Series Throughout the year, Duke Center for Autism researchers Lauren Franz, M.B.Ch.B., M.P.H., and Scott Kollins, Ph.D., investigators on the center’s NIH ACE study, connected with caregivers to share strategies and advice to help tackle difficulties arising during the pandemic. The popular, 20-minute video episodes shared on the center’s YouTube channel included “Four Simple Strategies,” “Back to School” and “Adult and Child Sleep & Self Care,” featured expert advice from center psychiatrists and psychiatrists, and vetted resources from community services organizations.
Clinic Spotlight: Akemi Huynh, M.Ed., Ed.S.
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ach year, hundreds of families seek help at the Duke Autism Clinic. Many of them are at a crucial turning point on their journey, and many are feeling anxious and apprehensive. For caregivers of neurodiverse children, the stress of making important decisions about intervention options and medical needs, navigating evaluation and diagnosis, understanding available community supports and special educational services, and unraveling insurance policies can be overwhelming. Armed with a compassionate manner and her training as a school psychologist, clinic coordinator and psychometrician Akemi Huynh, M.Ed., Ed.S., and her clinic colleagues respond to every phone call, meeting each individual “where they are,” addressing their unique concerns, and providing concrete, “nextstep” information.
“When COVID-19 brought lockdowns early on, stress levels rose for our families,” said Huynh. “What they needed most was transparency, empathy, and action—and we worked hard to deliver all three.” Looking for innovative ways to continue needed autism evaluations during the pandemic, Duke Autism Clinic psychiatrists and psychologists began telehealth assessments, and once approved, began studying a unique model to deliver early behavioral
interventions virtually. After COVID-19 protocols permitted inperson visits, Huynh and the clinic team contacted waitlisted families, shrinking wait times by more than half. When not responding to calls, Huynh provides support to clinic psychologists during their on-site evaluations, including preparing materials, scoring assessments, and navigating medical record transfers to other care providers.
“The best days are when I am able to help a distressed caller be more calm and hopeful,” said Huynh. “Caregivers often shared how their loved ones had been negatively impacted by pandemic disruptions and virtual schooling demands. Many have noticed a decline in mental health. It is rewarding to end these types of calls with the person feeling empowered, validated, and optimistic.”
Impact Report 2021
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Training A Lost Generation?
Pandemic Disruptions Affect Early-career Research Paths and Global Autism Investigations
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hile the COVID-19 pandemic has created challenges for global autism research, early career researchers have been particularly vulnerable to the impact of the pandemic on job security and career development. Loss of productivity from this pool of young investigators who drive future breakthroughs impedes research discoveries. In a study capturing the challenges facing early career autism researchers, neuroscientist Kim Carpenter, Ph.D., an investigator at the Duke Center for Autism Of the 150 early career researchers included in the and Brain Development, provided insights into the study’s survey data, 85% reported reductions in effects of COVID-19 on research studies, and on productivity. The biggest impacts included difficulty investigators’ productivity, training, and mental recruiting study participants, increased needs at home, health. The study showed that autism researchers and personal mental health. in the earliest phases of their career, specifically postdoctoral fellows through individuals in help ensure autism research does not suffer from a assistant professor (or equivalent) positions, have lost generation of researchers. been particularly vulnerable to long-lasting effects of pandemic-related disruptions, which may limit “Future scientific discoveries rely on well-trained, their ability to continue as autism researchers. Of motivated, engaged, and productive researchers,” the 150 early career researchers included in the said Carpenter. “To advance our understanding of study’s survey data, 85% reported reductions autism, it’s critical that early career clinicians and in productivity. The biggest impacts included scientists get the support, flexibility, and resources difficulty recruiting study participants, increased they need to keep at it. We cannot lose this needs at home, and personal mental health. In fact, generation of scientists.” the study noted a “three-fold increase in burnout,” and suggested that supports, such as funding, Harrop C, Bal V, Carpenter K, Halladay A. A lost generation? The impact of the COVID-19 pandemic on early career ASD flexibility, and tenure extensions, are needed to researchers. Autism Res. 2021 Jun;14(6):1078-1087.
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Trainee Spotlight: Raj Shah, M.D.
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ore than half of individuals on the autism spectrum have additional mental health care issues, such as anxiety or depression. Ideally, all have equal access to child-development and autism expertise providing high-quality care to help. In reality, persistent disparities and provider shortages exist worldwide. The Duke Center for Autism and Brain Development, a part of the Duke University School of Medicine, offers a unique blend of clinical practice and clinical research to post-graduate medical students who are working to change that. Post-doctoral resident Raj Shah, M.D., now a child psychiatrist at Eastover Psychological & Psychiatric Group, joined the Duke Autism Clinic team as a post-doctoral fellow, working with children and families seeking help with psychiatric concerns, behavioral issues, anxiety and other mental health care challenges.
“I had a chance to work with so many great families, and my time with them helped me truly appreciate the need for an individualized, child-centered approach to effective treatment,” said Dr. Shah. “Collaboration was a central piece of my work—not only with our families, but also with the clinic’s faculty and staff. The support of the entire team— and our dedication to the highest level of care—helped make visits with patients and caregivers
meaningful and effective. Once we transitioned to virtual visits, the ability for additional providers to join visits and provide help with just the ‘click of a button’ was priceless.” This year, Dr. Shah began treating children in private practice near Duke University, in Durham, NC, and calls his experience at the Duke Autism Clinic “invaluable.” “My post-doc work at the clinic cemented the fact that there really is no such thing as a ‘onesize-fits-all approach.’ Whether it is a new patient evaluation, a follow-up patient who requires additional diagnostic clarity, or a long-term patient who is returning for a routine visit, the knowledge and understanding of autism that I have taken away from my time at
Duke is priceless. My hope is that the experience I’ve gained will directly translate to an improved ability to care for my patients here in Durham.” The Duke University School of Medicine Department of Psychiatry and Behavioral Sciences Fellowship Program trains leaders in clinical and academic psychiatry with an emphasis on integrating an evidence-based approach to care for children and adolescents. Fellows benefit from exposure to a variety of clinical settings and specialty clinics, involvement in cutting-edge research, and mentorship by faculty who are invested in their professional development.
Impact Report 2021
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Advocacy & Community Cultivating Diverse Voices to Create Meaningful Research
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here is a diversity problem in autism research. Much of autism research has been conducted with white, upper-middleincome families living in North America and Northern Europe. Until recently, the perspectives and opinions of autistic individuals have rarely been included in the autism research agenda or within research study design. This approach has provided only a fragment of the story of autism. This is a problem because autism exists across all races/ethnicities, and affects people regardless of age, socioeconomic status, and nationality. The Duke Center for Autism and Brain Development has a long-standing commitment to neurodiversity, and the center includes autistic individuals as part of its research team and across its many stakeholder partners. The center is committed to positively influencing neurodiversity policy and practice at Duke University at all levels, including faculty training, student support, accommodations, and employment and hiring. Center faculty and staff have worked collaboratively with neurodiverse students to understand how best to partner to identify needs and to raise awareness and acceptance on campus and in the broader community. In alignment with the Duke University Moments to Movement Initiative, the center created its Task Force for Racial Equity, which sponsored internal efforts and professional development opportunities for staff, faculty and students throughout the year.
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Duke Center for Autism and Brain Development
“We strive to build a community of researchers, staff and students who are as diverse as the communities we serve,” said Duke Center for Autism Director Geraldine Dawson, Ph.D. “We believe that great science happens when diverse talents, experiences, perspectives, and cultures are welcomed and celebrated.” The center has recognized the key role of community partnerships from the earliest phase of the research cycle, which starts with defining research priorities. This year, the center established the Community Engagement Advisory Board which meets quarterly, with the purpose of creating strong, two-way, open dialogue among
“We envision a world that moves from acceptance of neurodiversities to one that celebrates the unique differences in all of us.” Tara Chandrasekhar, M.D.
The Duke Center for Autism and Brain Development has a long-standing commitment to neurodiversity, and the center includes autistic individuals as part of its research team and across its many stakeholder partners.
and between board members, sharing preliminary research findings, and inviting conversations focused on the needs and gaps in research and resources for the autism community. Board members include self-advocates and other key stakeholders and leaders in the disability field in the broader North Carolina community in the areas of education, health care, government, policy, and advocacy. [See story, page 31.] “We recognize that in order to create equitable access to services and supports that positively impact quality of life for autistic people and their families, it is imperative that we ensure autism research is inclusive of diverse voices, perspectives, and lived experiences,” said Lauren Franz, M.B.Ch.B., M.P.H., a child and adolescent psychiatrist at the Duke Center for Autism. The center has shown its commitment to equal and open access for all, especially those that are historically under-represented in autism research. Collaborating with the Duke Clinical
and Translational Science Institute Equity in Research Core, the center has enhanced study consent form language to substantially improve transparency and inclusion. The center partners with community primary care clinics who serve diverse and low-resource populations, offers materials and assessments in Spanish, provides flexible options for diagnostic evaluations, and offers telehealth treatment to better reach its rural communities. Additionally, the center strives to use materials and messages that reflect the diverse autism community. “We have a long way to go, but we are committed to this important process,” said Tara Chandrasekhar, M.D., Duke Center for Autism child and adolescent psychiatrist and co-chair of the Duke University initiative, Neurodiversity Connections. “We envision a world that moves from acceptance of neurodiversities to one that celebrates the unique differences in all of us.”
Impact Report 2021
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Advocacy & Community
Duke Center for Autism Stays Closely Connected in a Year of Distancing Although the pandemic locked us into a “year of social distancing,” the Duke Center for Autism and Brain Development stayed closely connected to our community partners and to the autism community, coordinating our popular, public events and special programs, and initiating engaging professional development opportunities. Music 2 the Max! The center brought its popular, public special events to the virtual platform, including Music 2 the Max! 2020, attended by more than 250 people across the globe. In collaboration with music educator William Dawson from Duke Arts & Health and a crew from Duke Technical Services, the center coordinated the free, month-long series featuring live welcome and closing events and three video episodes. In each, viewers participated in sing-alongs, learned the “science of sound,” and made musical instruments with common household items. The entertaining episodes can be viewed at autismcenter.duke.edu/Music2theMax.
Holiday Greeting Art Gallery & Contest Dozens of artists on the autism spectrum and their family members submitted artwork for the Duke Center for Autism 2020 Holiday Greeting Art Gallery & Contest. Artwork was featured on the Duke Center for Autism website in the Holiday Art Gallery. Ten-year old artist Bailey’s artwork, “Let it Snow,” was selected to illustrate the center’s digital holiday greeting card.
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Center Establishes Duke ACE Community Engagement Advisory Board
Morénike Giwa Onaiwu
Autism Acceptance Month Each April, during the United Nations Autism Awareness/ Acceptance Month, the Duke Center for Autism joins with the global community to celebrate neurodiversity. At its featured event on April 7, 2021, Morénike Giwa Onaiwu inspired hundreds of participants with her deeply personal story, sharing her experience as a Black autistic woman, global activist, teacher, and mother of autistic children. Onaiwu encouraged her audience to embrace the diversity of the autism community, explaining, “All autism is ‘real’ autism… Autism is a spectrum, and there is always more than one story to tell. There are dangers in a single story, because there is always more than one story to share and understand.” The center’s #celebrateneurodiversities social media campaign featured Duke Men’s Basketball Coach Krzyzewski, senior members of the Duke University leadership team, autism self-advocates, and the center’s staff and faculty. Throughout Autism Awareness/ Acceptance Month, Duke Center for Autism staff and faculty shared their expertise and advice across multiple community events and national news platforms. The video “What is Autism,” produced by Duke University Communications in collaboration with the Duke Center for Autism, was featured by the YouTube platform on World Autism Awareness Day, April 2nd, and has been viewed more than 380,000 times.
The Duke Center for Autism and Brain Development named 14 members to its newly established Autism Center of Excellence (ACE) Community Engagement Advisory Board. In its first year, the board has partnered with the center to provide perspectives and advice to support community-engaged research priorities, increasing the impact of scientific discoveries on the daily lives of those on the spectrum. Members represent diverse stakeholder perspectives from the community, including self-advocates, parents, educators, public policy leaders, community advocates, healthcare providers, and transition to adulthood/business leaders. Members include: Katherine Boeck, Council Member, NC Council on Developmental Disabilities Jeff Day, Self-Advocate, Principal Consultant PreSales, FICO Kristen Dorsey-Leake, M.D., Medical Director, Rural Health Group Danai Kasambira Fannin, Ph.D., CCC-SLP, Parent Advocate, Associate Professor, NC Central University Shelagh Kenney, Parent Advocate, Deputy Director, Center for Death Penalty Litigation Katharine Kollins, Parent Advocate, President, Southeastern Wind Coalition Jillian LaSerna, Ph.D., Assistant Professor, UNC Charlotte and Member, Chapel Hill-Carrboro Schools Board of Education Sharon Loza, Ph.D., Early Intervention Branch Head, NC Division of Public Health and Member, NC Infant and Young Child Mental Health Association Miles Ndukwe, Duke University Alumnus, Business Analytics Consultant, PNC Portia Pope, Director, Children’s Developmental Services Agency, NC Department of Health and Human Services Tracey Sheriff, Executive Director, Autism Society of NC Jill Sirko, Communications Coordinator, Disability Rights NC Caroline Sullivan, Executive Director, NC Business Committee for Education Madhav Swaminathan, M.D., FASE, FAHA, Parent Advocate, Professor of Anesthesiology, Duke University School of Medicine
Advocacy & Community
Law Enforcement Sensory Bags and Interaction Training Interactions with law enforcement and school resource officers can be stressful to autistic children who need a high level of support. In collaboration with the Brady Valcho Autism Foundation, several Duke Center for Autism clinical research specialists and clinicians, including Dr. Marika Coffman, Jessica Summers, Sarah Sipe, Allie Lerner, and Saskia Bock, presented resource officers in the Town of Holly Springs with training and specially designed sensory kits to promote positive engagements with autistic students and community members. The sensory kits and accompanying training will serve as a model to expand the project to other municipal law enforcement departments.
Autism Speaker Series The center offered seven monthly virtual sessions in its 20202021 Autism Speaker Series, featuring leading investigators, clinicians, and practitioners impacting autism research, interventions, and treatments.
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Triangle Run/Walks The Duke Center for Autism teams raised nearly $9,000 combined for the Autism Society of North Carolina “Triangle Run/ Walk for Autism” and the “Triangle Autism Speaks Walk,” which support the two nonprofits providing services, programs, and community engagement to North Carolinians affected by autism.
Neurodiversity in the Workplace Public Panel Discussion Duke Neurodiversity Connections, a campus-wide initiative that aims to raise awareness and create a community of support for students who identify as neurodiverse, along with the Duke University Career Center, hosted “Neurodiversity in the Workplace,” an event featuring panelists’ perspectives on navigating job interviews and transition to the workforce. Dozens of students, faculty, and staff attended, as well as employers and corporate representatives who are working to enhance and improve their inclusive recruiting, training, and retention efforts.
Thank You We wish to express our gratitude to the following organizations, agencies, foundations, and individuals who generously supported the work of the Duke Center for Autism and Brain Development during Fiscal Year 2021. Department of Defense National Institutes of Health • Eunice Kennedy Shriver National Institute of Child Health and Human Development • National Institute of Environmental Health Sciences • National Institute of Mental Health • National Institute of Neurological Disorders and Stroke • National Institute on Deafness and Other Communication Disorders New Jersey Governor’s Council for Medical Research and Treatment of Autism Autism Science Foundation Cord Blood Foundation Duke Institute for Brain Sciences Ireland Family Foundation National Science Foundation The Marcus Foundation Simons Foundation Ms. Katherine Boeck Mr. James Barrett and Dr. Stacey Coulter Ms. Laura Ann Claburn Ms. Carol Di Marco Dr. Kristen Dorsey-Leake Mr. William Florence and Ms. Joy Seppala Dr. Lauren Franz Ms. Katharine Kollins Mr. William and Mrs. Carol Kozy Mr. Randolph Lawrence Dr. Sharon Loza Mr. Michael MacLeay Mr. Rushabh Modi Mr. Nick Nickerson / 3,000 Miles for Autism Mr. Philip Mintz Ms. Portia Pope Mr. James Schwab and Mrs. Kimberly Schwab Mr. Tracey Sheriff Ms. Jennifer Boscia Smith Drs. Harry and Andrea Stylli Dr. Madhav Swaminathan Ms. Caroline Sullivan WE WELCOME YOUR SUPPORT By giving to the Duke Center for Autism and Brain Development, you join in our mission to help each autistic individual reach his or her fullest potential. As part of Duke University, the Duke Center for Autism and Brain Development is a 501(c)(3) non-profit organization. The Federal Tax ID number for the program is 56-0532129. How to contribute: By secure website: You can make your secure online gift by visiting https://www.gifts.duke.edu and entering “Duke Center for Autism and Brain Development” in the search bar. By check: Please make all gifts payable to “Duke University,” with Duke Center for Autism referenced in the “memo” portion of your check, and mail it to: Duke Health Development and Alumni Affairs Attn: Ms. Morgan Pope 300 W. Morgan Street, Ste. 1200 Durham, NC 27701
