Your Duke Center for Autism News & Updates

What's in this issue? Welcome from Director Dr. Geraldine DawsonAdvocacy, Opinion & Global Impact Clinic Spotlight: Itala AzzarelliDuke ACE Center & Current Research OpportunitiesEvents: What We've Been Up To!

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Welcome!

I am very pleased to share our newsletter with you, includinghighlights of recent events, a profile of one of our clinic staffmembers, and current research opportunities. We have been very fortunate to receive funding from federalagencies, such as the NIH, as well as donors and even staffhere at Duke. This funding makes a critical difference in bothour research and clinical missions. We have also remained active in advocacy as the discoursesurrounding autism evolves both in the public arena andacademic field. We are inspired, more than ever, to support andspeak up for individuals with autism, raise awareness, advanceour understanding through rigorous science, and improveavailable therapies and support systems for people with autism.In this newsletter we introduce you to one our very talentedsocial workers - one of several at our clinic whose passion forhelping people with autism and other developmental disabilitiesis evident in the work that she does. We have also planned newkinds of community events, allowing us to engage with a widerage range of individuals on the spectrum at our events. Lastly, I want to personally thank each and every one of you who partner with us in our researchendeavors - without you, what we do would not be possible, as our research, clinical, policy, andeducation missions are interconnected and mutually supportive. Sincerely,

Sincerely,

Dr. Geraldine DawsonDirector, Duke Center for Autism and Brain Development

Advocacy, Opinion & Global Impact

JAMA Pediatrics - Comment & Dawson's Response to Editor:Inappropriate Use of the Term Autism as Analogy In an opinion piece entitled, "The Electronic Health Record and Acquired Physician Autism,"published in the prestigious journal of JAMA Pediatrics, a South Carolina physician wroteabout his experience of using the electronic health record (EHR) in medical practice and howthis affected his clinician-patient interactions. The doctor explained that an increased focus onEHR documentation and expeditiousness in medical practice negatively impacted hisrelationships with patients and his ability to provide compassionate patient care. Hecommented: "Disturbingly, some physicians who adhere to the current standard of clinician-patient interaction act in a manner that mimics autism, exhibiting the same behaviors thatrender this disorder so socially incapacitating for those on the autistic spectrum." In a Letter to the Editor, also published in JAMA Pediatrics, Dr. Geraldine Dawson expressedher opinion on the doctor's inappropriate use of the term autism to suggest a lack ofcompassion, asserting that individuals with autism do in fact have the capacity for kindness,compassion, and warmth. Dr. Dawson made it clear that the use of the term "autism" todescribe a lack of empathy is dismissive, disempowering and incorrect. Read the original article here and Dr. Dawson's response here.

Clinic Spotlight

Itala M. Azzarelli, MSW, LCSW What is your professional training/background?I graduated with a BS in Psychology from Indiana Universityin Bloomington, Indiana and began my training within thefield of autism that summer. Initially, I worked in residentialsettings with adolescents who were considered significantlyimpaired by their autism; several of the children also hadmedical conditions such as seizures and cerebral palsy. Iremained interested in autism and wanted to expand myskills so that I could serve people with many different types ofspecial needs and also eventually gain experience workingwith adults. I was fortunate to have the opportunity to workwith great mentors and supervisors along the way. My search for a graduate school that was actively conductingboth research and clinical practice in the field of autism andchild development led me to UNC-Chapel Hill and theTEACCH program. I would eventually get my Masters inSocial Work from UNC but initially started down the path ofschool psychology.

Itala M. Azzarelli, MSW, LCSW

school psychology. Over the years my work experience has given me incredibleopportunities to learn in the areas of developmental delay,chronic illness, physical and mental health conditions,typically developing children, and of course, autism, whichhas remained closest to my heart. What is your current role here at the Center?My current role in the Duke Autism Clinic as a clinical socialworker is broad and can involve any of the following:screening and assessment of needs for children suspectedto have ASD and assistance with accessing more formalevaluation (either at Duke or another facility); providingsupport to parents and children who have recently been diagnosed with ASD; and providingsupport to families who are experiencing a myriad of challenges with their child/teen or youngadult on the autism spectrum. Parent education/training and connecting families to long-termcommunity supports are also very important to my role. What brought you to the Center? I started working at Duke as a Clinical Social Worker (CSW) in the Duke University Hospital in2010 and spent my first 2+ years in the Special Care Nursery and the Transitional CareNursery, moving to Pediatric Oncology in 2012. In the fall of 2016, I came to the Department ofPsychiatry and Behavioral Sciences with the hope of joining the Duke Autism Clinic, which wasin the process of being expanded. I wanted to be part of the wonderful clinical team thatincluded both the Duke Children's Evaluation Center (DCEC) and the Child Development andBehavioral Health Clinic (CDBH). What brought me to outpatient psychiatry was a desire to domore directed work with the children/teens I was seeing who needed more long-term andindividual support. I also dreamed of doing group work with teens and have recently been ableto do this here in the Duke Autism Clinic as well! What do you enjoy most about the work that you do?I most enjoy interacting with the children and families, as well as my co-workers and clinicalteam. More specifically to the children we serve, I treasure anything they share that is part ofsomething joyful for them, including their pets, dolls, songs, poses, and artwork galore. It fillsme with joy and gratitude when I see them smile, and it helps me understand how to supportthem, how to help them imagine their futures, and how to remind them of the best of who theyare. The other wonderful thing that happens in our work is that we witness families gettingconnected to the services they need and gaining mastery over skills to best support theirchild/teen, and we see their child/teen gaining skills to be more successful in many differentsettings. All of these things are incredibly rewarding and would not be possible without theteam approach that we take in the clinic. Tell us about a fun fact, aspiration, or pastime! When I am not at work I am balancing my need for nature, creativity, growth, and order, so thatI can be at my best with my two main jobs: parenting and working at Duke. I currently enjoy(among other activities) learning to play the electric bass, riding my bike, and practicing yoga. Idream about how to combine nature, movement, and music into therapy for individuals on thespectrum and for anyone that would benefit most from a multimodal approach to growth andhealing.

Research at Duke Center for Autism - Partner with Us!

A+ Treatment StudyThis study is sponsored by the National Institute of Health.

The goal of this study is to investigate an intervention strategy for families with children with autismand ADHD between the ages of 3 through 10. By combining a drug normally used to treat ADHDwith Early Start Denver Model informed parent coaching, we hope to provide an innovative way toimprove attention and communication in children with these two disorders.

The overall purpose of this study is to provide essential information about the impact of treating co-occurring ADHD and ASD with combined medication and behavioral intervention. This mayinfluence the treatment approach practitioners take with therapy and medication for children withASD and ADHD. To learn more, please contact us at 1-888-691-1062 or autismresearch@duke.edu.

Pro00085435

Join Our Autism Research FamilyThrough our registry, we are pleased to connect families andindividuals with research opportunities. We also host events

individuals with research opportunities. We also host eventsand activities to connect with the community. To date, over1,500 families and more than four thousand uniqueparticipants have joined our registry. By enrolling in our Volunteer Registry for Autism Research, wecan share information about upcoming events and emergingstudy opportunities that may be a good fit for you or yourfamily. The registry is open to individuals of all ages with and withoutautism. Your participation is always voluntary, and you maywithdraw at any time. To learn more about the registry and

sign up, you may read the consent form, enroll, and submit your information through oursecure online enrollment survey. You may also call us at 1-888-691-1062 or send an email to autismresearch@duke.edu. We willanswer any questions you may have and help you get registered! Pro00054178

Events: What We've Been Up To

Hitchhikers Robotics Group and Duke Center for Autism Partner to HostFirst Robotics Workshop for Youth on the Autism Spectrum Over 35 children on the autism spectrum and their families gathered at the Duke Institute for BrainSciences (DIBS) "Cube" on August 10th, 2019 to participate in a Robotics Workshop co-hosted bythe Duke Center for Autism and the Department of Psychiatry and Behavioral Sciences. The activities were led by the Hitchhiker's Robotics Group (HRG) in partnership with the DukeCenter for Autism and Duke Psychiatry staff. Dr. Tyler Hassenfeldt, a clinical psychologist at theDuke Autism Clinic, took initiative in leading and organizing the event, working collaboratively withDepartment of Psychiatry colleague, Jashi Abhirajan, and her son Akshar Shrivats, who is an HRGmember. Participants took part in three unique workshop stations that gave them the opportunity to build withLegos, play with Robots, and learn programming. We look forward to more events like this in thefuture!

Participants and Hitchhiker's Robotics Group members gather for a picture next to the 2059 robot at the end of the event.

Participants building at the Lego station.

Participants learning to code on tablets.

Participants catching basketballs thrown by the 2059 robot created by the Hitchhiker's Robotic Group.

Charlotte Stoute and Dr. Tyler Hassenfeldt greet event participants at the Duke Institute for Brain Sciences.

Dr. Tyler, HRG member Akshar Shrivats, and participants gather around the 2059 robot.

Another shot of the 2059 robot showing how it works by feeding the basketball at the bottom. Large rubber bands move topush the ball up to the top and then propel it out.

Lego station with Rubik's cube solver.

To learn about events hosted by the Center, please contact autismresearch@duke.edu.

Duke Emergency Department Raises Funds for Duke Center forAutism We are very grateful to the Duke Emergency Department for the support they showed ourCenter in honor of Autism Awareness Month this year. Led by Vicki Sutter, BSN, RN, thedepartment raised over $200 for the Duke Center for Autism and Brain Development in April! The Emergency Department was interested in donating to the Duke Center for Autismbecause of their frequent engagement with patients with autism. In light of this, Ms. Sutterasked if members of our Center's clinical team could provide the ED staff with guidance forinteracting with people on the autism spectrum in medical settings. Psychiatrist TaraChandrasekhar, MD, psychologist Jill Howard, PhD, and intern Sarah Edmunds, MS, enjoyedmeeting with the ED team to give them some tips on best practices. Small changes in thelighting of an exam room or ways of communicating with a patient with autism, who aresometimes nonverbal, can make a real difference. Sutter remarked, "In the Emergency Department, we encounter patients with autism in variousage groups. Working with this special patient population encouraged us to reach out to theDuke Center for Autism for more education. We also really wanted to raise awareness in ourdepartment and sold autism ribbons and buttons, with all proceeds going to the autism center.Working at Duke has been so amazing, and the collaborative effort between our departmentand the autism center has been a wonderful experience for our patients and our staff!"

Back row: Keith Valentine, Jillian Padilla, [a visiting nurse], Stephanie Hannah, Tracie Hazelett, Liz Indence, VickiSutter, Breanne Hamlett; Front row: Dr. Jill Howard, Mackenzie Hathaway, Shelby Ferry, Dr. Tara Chandrasekhar,

Sarah Edmunds.

Autism Speaks Triangle Walk The Autism Speaks Triangle Walk was held on April 7, 2019 at Duke University's EastCampus. The Duke Center for Autism walked in support of Team Vanilla Ice, which is in its 7thyear of fund raising. The team is led by Duke Professor Scott Kollins, PhD and his wifeKatharine. Congratulations to Team Vanilla Ice, who this year raised nearly $15,000, bringingtheir 7-year total to almost $130,000!

Dr. Scott Kollins addresses the crowd at the walk.

Lori Reinhart-Mercer, Sarah Sipe, Dr. Lin Sikich, Dr. Tyler Hassenfeldt, and Dr. Jill Howard answered questions fromwalk attendees at the Duke Center for Autism table.

Autism Awareness Month Guest Speaker, Hon. Mike Lake In celebration of Autism Awareness Month, the Duke Center for Autism invited the HonourableMike Lake, a Member of Canadian Parliament and a global autism advocate, to speak at Duke.His presentation centered on life with his 23-year-old son Jaden Lake, who has autism. Mr. Lake delivered an inspiring presentation titled, "Expect More: An Autism Adventure." Theevent took place on Monday, April 15, 2019 at 6:30 pm in the DIBS Cube on Duke's WestCampus. Community members, self-advocates, researchers, health providers and leaders atDuke were in attendance. In sharing Jaden's personal story, Mr. Lake inspired us to change the way we think about thepeople around us - their abilities, their challenges, and the unique contributions that they canmake that benefit all of us. Read more about Mr. Lake and Jaden in a Duke Today article thatcan be found here.

The Hon. Mike Lake, Jaden Lake, and Dr. Geri Dawson.

The Hon. Mike Lake and his son Jaden during their presentation.

Nick Nickerson and 3,000 Miles for Autism Donate to Duke Center forAutism

We want to say a big THANK YOU to Mr. Nick Nickerson, founder of 3,000 Miles for Autism.Mr. Nickerson is the father of Adam, an adult with autism, and a passionate advocate forautism research. At age 73, Mr. Nickerson has nearly completed his goal of running 3,000miles to raise funds for autism research. "In 2017, I decided to dedicate the rest of my life toraising money to be donated to autism research," he said. The Duke Center for Autism and Brain Development has been the fortunate recipient of nearlyfour thousand dollars raised by Mr. Nickerson that have gone toward our research program.We are amazed by his athletic achievement and truly appreciate the support we have receivedfrom 3,000 Miles for Autism!

Nick and Adam Nickerson present Dr. Geri Dawson with a check from 3,000 Miles for Autism fundraising.

Duke Center for Autism and Brain Development | autismcenter.duke.edu

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