CARD Newsletter - February 2016

Help Us Celebrate 20 Years

February 2016 • VOL. 9, ISSUE 1

This year marks 20 years since the Center for Autism and Related Disorders (CARD) was founded! In honor of our 20th birthday, we are asking for gifts of $20. To donate to our “20 4 20” campaign, you can: 

Visit kennedykrieger.org/CARD20 or scan the QR code and click “Donate Now”



Send a check payable to “Kennedy Krieger Foundation—CARD” to Kennedy Krieger Institute, 707 North Broadway, Baltimore, MD 21205, Attn: Office of Philanthropy

With your help, we hope to raise $200,000 so that we can continue advancing the autism spectrum disorder field!

IMFAR

By Rebecca Landa, PhD, CCC-SLP It’s an exciting time for friends of CARD. We are celebrating the coming of the International Meeting for Autism Research (IMFAR) to Baltimore in May. IMFAR is an annual scientific meeting designed to bring researchers from diverse areas of expertise from around the world together to share ideas and findings about the nature, causes, and treatments of autism spectrum disorders (ASD). The sharing and dissemination of peer-reviewed scientific work that happens at IMFAR speeds the discovery process by generating new ideas, fostering the sharing of diverse perspectives, creating innovative solutions to research problems, forming new collaborations, and advancing the work and training of new ASD scientists.

Each year, a pre-conference is held the day before IMFAR to inform community stakeholders of the latest thinking and information generated by leading ASD researchers. As the IMFAR chair for 2016, I have the responsibility of organizing this year’s IMFAR Pre-conference, which will be held at Towson University's West Village Commons on May 11, and hosted by CARD. In this newsletter, we unveil some of the researchers who will speak at this event.

The venue can only accommodate 300 attendees, and I know that tickets will be in high demand. Please do not miss this chance to hear from leading Inside this issue researchers about important findings and practical implications. Registration IMFAR Speakers 2 will open soon—visit KennedyKrieger.org/IMFAR to learn more.

Our New Nutritionist

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2015 Highlights

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Employee Spotlight

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I'd like to acknowledge the team at CARD who worked diligently to organize this event, as well as representatives of state and community ASD groups who joined together to design the content areas and select the speakers for this event.

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IMFAR Pre-conference Day Speaker Highlights Save the Date: May 11th, 2016 AUTISM POLICIES & LEGISLATIVE UPDATES

Paul Shattuck, PhD, Associate Professor, A.J. Drexel Autism Institute There is ever-growing recognition and interest in the importance of life course outcomes and challenges in ASD, which is why we selected a keynote speaker focused on adult outcomes, a topic that will be of broad interest across the autism community. Dr. Paul Shattuck is the leader of the Drexel Institute's research program area on life course outcomes. His research is aimed at understanding services and related outcomes among youth with autism as they leave high school and transition to young adulthood. His research has appeared in high-impact scientific journals including Pediatrics, Psychiatric Services, the Archives of Pediatrics and Adolescent Medicine, the American Journal of Public Health, and the Journal of the American Academy of Child and Adolescent Psychiatry. He also has written op-ed pieces that have appeared in leading national newspapers including The New York Times. In 2009, Dr. Shattuck’s study on the age of diagnosis among children with autism was recognized as one of the most important autism studies of the year by both Autism Speaks and the Federal Interagency Autism Coordinating Committee. Dr. Shattuck's 2011 study on the use of services by adults with autism was recognized as one of the 20 most impactful scientific studies in the field of autism by the Interagency Autism Coordinating Committee. His 2012 study on postsecondary job and education outcomes was recognized by Autism Speaks as one of the Top 10 research advances of the year.

TECHNOLOGY & APPLICATION

Peter C. Mundy, PhD, Director of Educational Research Lisa Capps Endowed Chair in Neurodevelopment and Education Professor, School of Education and Department of Psychiatry and Behavioral Sciences University of California Davis MIND Institute Peter Mundy, PhD, is a developmental and clinical psychologist who has been working on defining the nature of autism and developmental disabilities for the past 30 years. His work began in 1981 at the UCLA Neuropsychiatric Institute. At that time, little was known about the characteristics of the social deficits of autism. His studies with collaborators Marian Sigman and Connie Kasari contributed to the understanding that impairments in the early development of infants’ ability to coordinate their visual attention with other people (i.e., joint attention) is a fundamental feature of early onset autism. This observation was first published in 1986 and it has contributed to significant improvements in the early identification, diagnosis, and treatment of children with autism. In the years since he has studied the behavioral and neurocognitive processes involved in a model of joint attention, and its role in learning, social cognition, and developmental disorders. Along with colleagues at the MIND Institute (Sullivan & Mastergeorge) he has been advancing a new neurodevelopmental model of joint attention, social cognition, and autism. One new avenue of application of this model is to attempt to advance research on school readiness among preschool children. He has published over 100 journal articles and chapters on early social development, autism, and social cognition. He has received federal funding for his research continuously since 1982 across 16 different projects.

For more information go to: KennedyKrieger.org/IMFAR 2

DELIVERING AUTISM SERVICES

Amy M. Wetherby, PhD, CCC-SLP Professor, Department of Clinical Sciences, Florida State University Laurel Schendel Professor, Department of Communication Disorders Director, Autism Institute in the College of Medicine Amy M. Wetherby has 30 years of clinical experience and is a fellow of the American SpeechLanguage-Hearing Association. Dr. Wetherby has published extensively and presents regularly at national conventions on early detection of children with ASD and intervention for children with ASD using the SCERTS® model. She is the project director of a doctoral leadership training grant specializing in autism funded by the U.S. Department of Education. She served on the National Academy of Sciences committee for educational interventions for children with autism and is the executive director of the Florida State University Center for Autism and Related Disabilities. Dr. Wetherby is the project director of the FIRST WORDS Project, a longitudinal research investigation on early detection of ASD and other communication disorders, funded by the U.S. Department of Education, National Institutes of Health, and Centers for Disease Control and Prevention. She is also the principal investigator of an early treatment study teaching parents of toddlers with ASD how to support social communication and play in everyday activities funded by Autism Speaks and the National Institutes of Mental Health.

Kristie Patten Koenig, PhD, OTR/L, FAOTA Chairperson, Department of Occupational Therapy Associate Professor of Occupational Therapy, New York University Dr. Koenig is an occupational therapist who examines the efficacy of interventions utilized in public schools for children and adolescents with ASD. Her research focuses on using a relationship-based paradigm to help enhance the individual with ASD's ability to understand the impact of relationships on their quality of life. The approach employs person-centered interventions, in inclusive settings, that build on the individual’s strengths. Dr. Koenig is the principal investigator (PI) of the NYU Steinhardt's ASD Nest Program, an inclusive program for children and adolescents with autism in the New York City Department of Education. She is also PI of the GIFTED project, a three-year grant project aimed at developing women leaders in public schools in Ghana. Dr. Koenig teaches professional and postprofessional courses in the area of pediatric intervention, school-based practice, and sensory processing and regulation. Dr. Koenig has published and presented nationally and internationally on topics related to examining the efficacy of sensory and motor interventions that impact one's ability to regulate behavior in home and community environments.

CLOSING KEYNOTE

Peter Gerhardt, EdD, Director of Education-- Upper School McCarton School, NYC Dr. Gerhardt has over 30 years experience utilizing the principles of applied behavior analysis in support of adolescents and adults with ASD in educational, employment, residential, and community-based settings. He is the author or coauthor of articles and book chapters on the needs of adolescents and adults with ASD and he has presented nationally and internationally on this topic. In addition, Dr. Gerhardt serves as chairman of the Scientific Council for the Organization for Autism Research, is on the editorial board of Behavior Analysis in Practice, and is on numerous professional advisory boards, including the Autism Society. Dr. Gerhardt received his doctorate from the Rutgers State University of New Jersey Graduate School of Education. Dr. Gerhardt’s research interests include issues related to intensity of behavior analytic instruction with adolescents and adults, community integration and employment, development of adaptive behavior competencies, positive behavior supports with complex individuals, and the use of technology to support community safety and independence.

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A Nutritional Resource for CARD

By Andrea Heyman, MS, RD, LDN Nutrition can affect health, growth, attention, and behavior in children, including those with ASD. Since June, CARD has had a registered dietitian nutritionist available to see patients. Several patients have already benefited from working with the nutritionist. For more information about nutritionist Andrea Heyman, please see the Employee Spotlight on page 6.

The nutritionist can help with nutrition-related concerns seen in children with ASD, including specific nutrient deficiencies; overweight or underweight tendencies, food selectivity, and food or fluid refusal. Ultimately, the nutritionist aims to implement the best diet for the patient while considering possible limitations, such as sensory issues, medical or dental problems, food allergies, social factors, and family eating habits.

What to Expect At each initial evaluation, the nutritionist collects detailed information about the child’s eating habits, including: possible food allergies; symptoms such as diarrhea, vomiting, or gagging with eating; use of vitamins; and the child’s growth history. The nutritionist determines the nutritional adequacy of the child’s diet and creates a nutrition plan with specific recommendations. If appropriate, nutrition education will be provided to the patient or the caregiver. Recommendations for follow-up are also provided.

Learn social skills through a new technology program! Researchers at Kennedy Krieger’s Center for Autism and Related Disorders (CARD) are investigating the effectiveness of an interactive robotics program, Milo, aimed at improving social skills. Families of children with ASD between the ages of 4-8 years are invited to participate in this research study.

If interested, please contact us at 877-850-3372 or Reach@KennedyKrieger.org.

Principal Investigator: Rebecca Landa, PhD Protocol Number: IRB00067744

Dear Friends,

attitude, our best plans will waste away. So here, at the Valentine's season, I want to send out a note of We are two months into the new year. How are we doing encouragement to all of us who share our love of with our resolutions? If you are falling a little behind on individuals on the autism spectrum. Let's try a mantra of your expectations for yourself, don't become discouraged. I patience and understanding in those moments when things like to think of a resolution as a process. I find myself seem overwhelming or unsure. And in every opportunity saying, all the time, "Life is a process" or "Things unfold". we encounter, we can send a verbal or silent valentine: Have you noticed that the 'quick fixes' don't seem to work- a kind word, a smile, a helping hand. Send us your ideas for and sometimes they actually break a thing or two along the sharing the "love" - CARDnewsletter@kennedykrieger.org. way? Resolutions are reached through a process of And PS- I hope to see lots of you at the IMFAR reflection. In our day to day lives, there is little time for pre-conference! reflection. We experience, we decide, we do... but do we reflect? Maybe down deep we are filtering through all the Warmly, emotions and experiences that we have had during the past year and at the end of the year- at the last moment - some clarity bubbles to the top. We try to take that clarity, put it into words, write it down so that we don't lose the insight, and then translate it into an action or new attitude plan. At the heart of it all, attitude reigns. Without the positive

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Center for Autism and Related Disorders 2015 Year in Review CARD did some amazing things in 2015! Here are just a few of our major accomplishments:

 Completed a study funded by the United States Department of Education’s Institute of Educational Sciences that enabled us to translate the Early Achievements (EA) model for use in public school preschool classes for children with ASD

 Funded by Delaware to train teachers and a school system coach in the implementation of the EA model in toddler and preschool classes for children with ASD

 Opened our preschool classroom for 4-year-olds in under-resourced homes (no requirement for having ASD)  Invited to present at the annual American Speech-Language-Hearing Association (ASHA) convention and in the United Kingdom regarding early identification of ASD and early intervention for children with ASD

 Acquired funding to begin a social robotics intervention program with ‘Milo the Robot’ from RoboKind; study has started for 4- to 8-year olds. For more information, see page 4.

 Celebrated our Odenton site’s one year anniversary  Published articles in Rehabilitation Psychology, Journal of Pediatric Health Care, Journal of Autism and Developmental Disorders, Journal of the American Academy of Child and Adolescent Psychiatry, Frontiers in Psychology, Journal of Child Psychology and Psychiatry, and Molecular Autism

 Grossed $3,556 in donations through the 20-4-20 restaurant campaign  Sharon Conty, MS, CCC-SLP earned the ASHA Ace award  Dr. Anna Maria Wilms-Floet was voted one of Baltimore magazine’s Top Doctors for 2015  This year we welcomed 21 new CARD staff members!

Aishah AlFadhalah, Clinical fellow—SLP Elgiz Bal, Neuropsychologist I Sarah Belivakici, Therapeutic assistant Shakita Brown, Therapeutic assistant Karen Chavez, Therapeutic assistant Belinda Chen, Data entry specialist Martha Davis, Speech-language pathologist I Jacqueline Dolan, Speech-language pathologist I Ebony Holliday, Research coordinator IV Courtney Klima, MICC teacher Lindsay Kraft, Data entry specialist Summer Lane, Neuropsychologist I Participants in the 11th annual ROAR for Autism event. We Leanne Lixfield, Therapeutic assistant raised nearly $125,000 for autism research last year!

Hilary May, Clinical fellow—SLP Katherine McCalla, Psychologist I Alexander McKenzie, Database manager I Do you love CARD? Let us know!

Erin Murray, Speech-language pathologist I Rachael Plotkin, Neuropsychologist I Email Carly Solle, Early intervention coordinator CARDNewsletter@kennedykrieger.org Pearl Teeratananon, Speech-language pathologist I Alexandria Travis, Research assistant I and your quote may be seen in an upcoming issue!

Julia Virtue, Therapeutic assistant of our newsletter!

Welcome to the team!

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Free Upcoming STAR Trainings Taking Action to Sustain the Level of Care for Our Loved Ones:: Peace of mind knowing you are doing the right thing Wednesday, February 17th, 11:30 a.m. to 12:30 p.m., presented by James W. Curran, III, CFP and Monty Knittle, CFA Using iPads in the Classroom Wednesday, March 23rd, 11:30 a.m. to 12:30 p.m., presented by Deidre Rabuck, MS, and Shaun O’Branski Weight Management and Autism Spectrum Disorders Wednesday, April 6th, 11:30 a.m. to 12:30 p.m., presented by Andrea Heyman, MS, RD, LDN For more information or to register, visit kennedykriegercard.eventbrite.com

ROAR for Kids 2016 Please join us for Kennedy Krieger Institute’s ROAR for Kids 2016 on April 30 at Oregon Ridge Park in Cockeysville, MD. This 5K and low mileage fun walk will feature a family fun festival filled with games and a Mascot Challenge. You can support the Center for Autism and Related Disorders by joining our team – The CARD Dream Team OR by starting your own team and then selecting Team Program: Center for Autism and Related Disorders.

Visit ROARforKids.KennedyKrieger.org for sign up. If you have questions, please contact Joy Johnson at 443.923.7616 or Stacey Duvall at 443.923.7680.

Employee Spotlight Andrea Heyman, MS, RD, LDN Andrea Heyman is a registered dietitian and licensed dietitian nutritionist who has been practicing in Maryland for 18 years. She obtained her Master of Science in Epidemiology from the University of Maryland. She is certified in childhood and adolescent weight management and adult weight management by the Commission for Dietetic Registration. Andrea was hired

by Kennedy Krieger Institute approximately three years ago to develop and implement the Weight Management Program. Her responsibilities have grown to include providing nutrition assessment and recommendations in the Spina Bifida Clinic, working with employee wellness initiatives, and working with patients at CARD. In October, she attended the American Academy of Cerebral Palsy and Develepmental Medicine’s annual conference where she presented a poster describing her work with the Fit and Healthy Kids Group: A Multidisciplinary Fitness and Nutrition Education Program for Children with Neurodevelopmental Diagnoses and Obesity.

For more information about research studies at Kennedy Krieger Institute, visit 6

kennedykrieger.org/research-training/participate-in-research