Your Duke Center for Autism News & Updates
What's in this issue?
 
                     
welcomeWelcome!

Thank you for signing up for our electronic newsletter. Our team at the Duke Center for Autism and Brain Development is excited to share news from our research, clinical, and training programs! It is a true pleasure and privilege to serve as an Associate Director for the Center. In this role, I oversee our clinical services and training programs for psychology graduate students (externs and interns), postdoctoral fellows, psychiatry residents, and child psychiatry fellows. We have an incredibly dedicated team of faculty who provide expert guidance and mentorship to a growing team of trainees. As we celebrate the accomplishments of the cohort that will graduate this spring, we will welcome a new group into our training program this summer.  

In this fourth edition of the newsletter, we have highlighted many new developments from across our Center. In reflecting upon these updates, I am reminded of our stated mission and vision for each person on the autism spectrum to reach his or her full potential, living a life of meaning, purpose, and dignity. Our faculty, staff, clinic trainees, and research fellows continue to be inspired by this mission and vision, and we look forward to a busy summer ahead!

Sincerely,

   Nicole Heilbron, PhD
   Associate Director
   Duke Center for Autism and Brain Development
 
clinicClinic Spotlight: Can Visual Supports Improve Primary Care Doctor's Visits?
Leonczyk  (right) poses for a photo featured in a Doctor's visit  "social story".
Caroline Leonczyk, MA, is a clinical psychology intern at the Duke Center for Autism and Brain Development. In addition to providing clinical services at the Duke Child and Family Study Center, Leonczyk is collaborating with Dr. Jeffrey Baker, Pediatrician and Professor in the Department of Pediatrics, to conduct a quality improvement project focused on the use of visual supports for individuals with autism in the primary care setting.
 
T he project was inspired by the strong need for better tools that will help children with autis m prepare for their doctors' visits. Routine and necessary procedures , such as blood draws and blood pressure, can be scary and uncomfortable - partic ular ly for some children with autism. This can cause so much distress that the family and provider are unable to complete the procedure with the child altogether. Over time this can be a great disadvantage to children, as they are less likely to get the preventative care they need. 

Reward at the "end" of a visit in the "social story".
"We know from parent reports, clinical experience, and the scientific literature that visual supports can be an effective tool to help individuals with autism, particularly when participating in a new activity or routine," says Leonczyk.  

Despite their widespread use in educational and recreational settings tailored to individuals on the autism spectrum, visual supports have not yet been widely integrated in medical settings. 

"Our goal is to figure out how to adapt and implement these supports in the primary care setting. We know that there are different considerations in a medical setting than at school, for example. The partnership between the Duke Center for Autism and Brain Development and Duke Children's Primary Care is ideal for answering this question, as it allows collaboration between medical professionals who are familiar with the difficulties that arise during medical visits, clinicians who specialize in intervention for individuals with autism, and families and children who are the experts on their own experience."  

The pilot project is being completed through Duke Children's Primary Care. Leonczyk, Baker, and a team of psychology graduate students have created visual supports for medical professionals to use during visits and for families to use at home in advance of subsequent visits. Questionnaires will be given to parents, nurses, and physicians for feedback that will allow the team to refine the visual supports as needed. To measure how "successful" visits are, the team will also track how many planned procedures were successfully completed among patients. The project is one of many ways that our Center hopes to inspire collaborations between our research team and clinical experts, as well as provide training opportunities in interdisciplinary settings to improve the lives of families with loved ones on the spectrum. Leonczyk is hopeful that if the supports are feasible and helpful they will be able to replicate them in other Duke clinics.
researchspotResearch at Duke Center for Autism - Partner With Us!
The aViation study will test an investigational medicine that blocks a hormone receptor in the brain thought to play a part in socialization, stress, anxiety and aggression in autism.
 
This study involves taking a study medication or a placebo (no active medication) daily for 24 weeks in addition to visiting our center approximately 7 times. These visits involve physical exams, blood tests and questionnaires. In between these visits, a nurse may visit your home to collect more blood samples and check on the participant. The entire study will last approximately 39 weeks.

To learn more, contact autismresearch@dm.duke.edu.

Sensory Processing and Anxiety in Preschool Age Children with and without ASD

Studies suggest that sensory over-responsivity - a set of symptoms characterized by heightened and unusual reactivity to sensory stimuli that occurs more frequently among children with ASD than typically developing children - is associated with anxiety in individuals with ASD. The goal of this study is to conduct an in-depth study of the relationship between sensory over-responsivity and anxiety symptoms in preschool age children with and without ASD . Diagnostic and cognitive evaluations with a written report and feedback to caregivers are conducted as part of this study. If you are interested in participating, please contact autismresearch@dm.duke.edu.
 
 
Duke is one of five universities conducting a multi-center research study to better understand social development in children with autism spectrum disorder (ASD) and children with typical development. The goal of this study is to develop a better understanding of children's social communication abilities so that improved measures of social communication can help clinicians diagnose, track, and assess treatments in children with ASD. Diagnostic and cognitive evaluations with a written report and feedback to caregivers are conducted as part of this study. To learn more about the study and how to participate, please contact autismresearch@dm.duke.edu.
 
Join Our Autism Research Family

Through our registry, we have been pleased to connect families and individuals with research opportunities. To date, close to a thousand families have joined our registry. We also host events and activities to connect with the community.

By enrolling in our
Volunteer Registry for Autism Research , we can share information about upcoming events and emerging study opportunities that may be a good fit for you or your family. The registry is open to individuals of all ages with and without autism. Your participation is always voluntary, and you may withdraw at any time. To enroll in our registry, you can request an enrollment call using our online webform. You may also call us at 1-888-691-1062 or send an email to autismresearch@dm.duke.edu. We will answer any questions you may have and help you get registered!  

dukeabcResearch Findings
Results from DukeABCs study published in Stem Cells Translational Medicine

The DukeABCs study is the first open-label trial evaluating the use of cord blood infusions as a potential treatment to improve outcomes in pre-school aged children with ASD. Results were published on April 5th, 2017 in the scientific journal Stem Cells Translational Medicine.The primary aim of this phase I study was to determine the safety and feasibility of a single infusion of a child's own cord blood. Changes in communication skills and severity of ASD symptoms in children ages 2 to 5 were measured up to one year after the infusion. Although the findings indicate that this treatment is safe and well tolerated, a phase II study is needed to determine if the improvements detected in this study can be attributed to cord blood. To answer this question, our team is in the process of conducting a phase II randomized placebo controlled clinical trial ( DukeACT) that will assess the efficacy of a child's own cord blood and best match donor cord blood against placebo. The phase II study is no longer recruiting as we have enough families already enrolled in this study. The scientific article detailing the results from the Phase I study published in the journal Stem Cells Translational Medicine can be found here. The study was also covered by CNN.

eventEvents: What We've Been Up To, What You Won't Want To Miss
Autism Speaks Walk

The Triangle Walk Now for Autism Speaks will be held on Duke's East Campus on Saturday, April 29th.
The Duke Center for Autism will again be supporting and walking as part of Team Vanilla Ice, the team set up by Duke Professor Scott Kollins, PhD, and his wife Katharine, which is in its 5th year of fund raising. Since 2013, Team Vanilla Ice has raised over $60,000 and has been the top fundraising team for the Triangle Walk event every year! We hope to see you there!
 
Sports Clinic with Duke Women's Basketball 

The Duke Center for Autism was thrilled to partner with Duke Women's Basketball to host our fourth sports clinic on Thursday, April 20th. Over thirty youth attended the 90-minute event, which was tailored for individuals on the autism spectrum and their families. Participants learned basketball techniques from members of the Duke Women's Basketball team and received autographs from the Blue Devils.

We look forward to continuing a tradition that brings together families of individuals with autism and creates a welcoming, inclusive space for children and teens of all abilities.

Families may email autismresearch@duke.edu to learn about future events hosted by the Duke Center for Autism.  
   
The event was covered by ABC11 , The News & Observer , Spectrum News , and Blue Devil Network! 



 
 
 
key
In a Different Key: John Donvan and Caren Zucker speak at Love Auditorium for Autism Awareness Month Event 
 
On April 5, 2017, in hono r of Autism Awareness Month, the Duke Center for Autism and Brain Development and the Duke Institute for Brain Sciences hosted a special event with Emmy Award winning journalists John Donvan and Caren Zucker. Donvan and Zucker have devoted 17 years to reporting on autism for ABC News and PBS and are the authors of In a Different Key: The Story of Autism , a New York Times Best Seller that chronicles the history of autism.

Caren Zucker, Geraldine Dawson, PhD, Director, Duke Center for Autism, Mary Klotman, MD, Dean, Duke School of Medicine, John Donvan, and Allen Song, PhD, Interim Director, Duke Institute for Brain Sciences. 
 

Community members and Duke faculty, staff, and students gathered in Love Auditorium in the Levine Science Research Center on Duke's campus to hear Donvan and Zucker's presentation, entitled "Autism's First Child: Lessons on Acceptance, from a Small American Town." The talk centered on the theme of acceptance of those with autism spectrum disorder by their local communities and by society as a whole. It featured inspiring stories of people's resourcefulness and determination that have had a major impact on those affected by ASD.

John Donvan and Caren Zucker at Love Auditorium, Duke University 
 
Within the broader theme of acceptance, Donvan and Zucker spoke about Donald Triplett, who was the first child diagnosed with autism in the 1943 article by Dr. Leo Kanner which first outlined the condition. Donvan and Zucker reported that Mr. Triplett, now 83 years old, has enjoyed a positive and encouraging life experience, and they attribu
ted this outcome in great part to the caring support of the Mississippi community where he has lived all his life. Mr. Triplett's story, along with other vignettes shared by Donvan and Zucker, illustrated the importance of accepting and valuing those with autism spectrum disorder and welcoming them into our broader communities and society. 
  
advopAdvocacy & Opinion
Invited Commentary in Fortune Magazine: Sesame Street's Julia and Trump's AHCA Proposal

Earlier this year we welcomed Sesame Street's new Muppet, Julia, who has autism. In an invited commentary for Fortune magazine, Dr. Geraldine Dawson explains the value of Sesame Street as a tool for promoting early education. Amidst a political climate that threatens the stability of crucial medical and health services for individuals with autism, Dr. Dawson stresses the importance of continued governmental support for health, medical, and educational programs.

The repeal of the Affordable Care Act (ACA) proposed by President Trump and Republicans would eliminate the ACA's Medicaid expansion, which serves many people with autism and their families. Dr. Dawson warns that cuts in federal funding for medical research in Trump's recent budget proposal will impair our progress in discovering and creating better tools for autism screening and intervention. In addition, Dr. Dawson stresses the importance of government support for individuals with autism throughout the life span, and how the continued public funding of programs such as Sesame Street offers meaningful benefits to individuals on the spectrum and the rest of society.

Dr. Dawson reminds us that children with autism are often targets of rejection and bullying by their peers, which has lifelong health and psychosocial ramifications. Sesame Street's broad reach can help increase autism awareness and the acceptance of those on the autism spectrum, thereby promoting supportive environments and introducing positive attitudes at a young age. In turn, greater acceptance and understanding leads to more opportunities for individuals with autism to demonstrate their talents and form meaningful relationships with their peers throughout childhood and into adulthood. Dr. Dawson also points out that raising awareness and reducing stigma positively impacts parents' willingness to seek autism screening and treatment early on, and may encourage other caregivers to recognize early signs of autism and speak up. You can read the commentary in its entirety on Fortune's website.
 
Duke Center for Autism and Brain Development |  autismcenter.duke.edu
 
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