CARD Newsletter April 2015 by Kennedy Krieger Institute

3901 Greenspring Avenue, Baltimore, Maryland 21211

Help Us Celebrate 20 Years

card.kennedykrieger.org

April/May 2015 • VOL. 8, 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 and click on the Donate Now button.

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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 (ASD) field!

The Importance of Gaze Expression By Joshua Haworth, PhD The eyes are much more than a window to the soul. Arguably, the eyes (and related brain networks) are the fundamental basis for our social being. The health of the brain is critical for the development of our social thinking ability. How much can be said with a simple glance to the ground when one is asked, ―Who took the cookies from the counter?‖ or when the location of a hide-n-seeker is accidently revealed by a quick glance from an accomplice who has just been caught? The former is an example of gaze use for emotional expression and the latter is an example of using gaze to reference something or someone. Each of these uses can be expressive (telling another about one’s mood or where I would like them to look) or receptive (seeing and understanding another’s mood or where they would like Inside this issue me to look). Interestingly, the social understandings and expressions that occur through the eyes are generally learned without being taught . For those of you who are familiar with the social gaze behavior of individuals with ASD, you know that it can be difficult “20 4 20” Partnership 4 to help foster these skills of sending and understanding signals sent by the eyes. April Events

Research Findings

Expressive gaze offers a feeling of connectedness to others by letting them in on feelings and directed interests. Receptive gaze is important to fully appreciate the emotional state of another, or to properly associate spoken words and simultaneous gaze being used to refer to some thing or person. Our previous work has shown that very young children with ASD tend to use expressive gaze less often than children without ASD. Because they differ in expressive social gaze behavior, children with ASD can be mistakenly labeled as socially disinterested or aloof as they grow older. Continued on page 2 1

The Importance of Gaze Expression (continued) Gaze behavior is inherently tied to other aspects of development. Our eyes help us to familiarize ourselves and interact with the world around us. They help us bridge the sensory, motor, cognitive, and social domains as we gain experience with people and objects. For example, handling toys and other objects often leads to social engagement, such as showing the toy to others. In a recent study at CARD, we noticed this connection was not the same for children with ASD. We are working to discover innovative ways to help those with ASD to increase the use of their eyes in social communication. Also, we are developing interventions to help school-aged children with ASD understand social cues expressed by other people's eyes We hope this will help children with ASD to improve their social comfort and provide them a means to discover new ways to interact with others. Stay tuned for more information about opportunities to participate in this study. We will give details in the next newsletter.

For more information about research studies at Kennedy Krieger Institute, visit kennedykrieger.org/research-training/participate-in-research Happy Spring, everyone! As you all know, April is Autism Awareness Month. It is so exciting to see the amount of sharing and outreach focused on ASD that flows forth to the community in April each year. Baltimore's Light It Up Blue at City Hall will happen with the Mayor on April 2 at 7:45 PM. I hope to see a huge crowd out there this year. Also, please note the special speaker we have this year for CARD's annual ROAR Distinguished Scholar event: Dr. Joseph Piven from the University of North Carolina, Chapel Hill. Dr. Piven leads a national network of scientists who are using neuroimaging techniques and behavioral assessments with infant siblings of children with autism. The babies enter the study as early as 3 months of age, and participate in multiple assessments until they are 36 months old. The findings from this study so far have been astounding. Dr. Piven's presentation at CARD on April 7th at 3:30 PM is free, so please come! You will learn a great deal about the development of the brain in individuals with autism, and important clues to the causes of ASD. Dr. Piven's visit is sponsored by ROAR funds, which have also led to major discoveries about motor functioning in autism, the development of an innovative new autism screener, the development of an intervention for infants at risk for ASD, and much more. Please support ROAR via sponsorship, donation on the ROAR.kennedykrieger.org website, forming a team to join in the 5K, or volunteering for the

event! Every dollar helps us to help individuals on the autism spectrum. Please stay on the lookout in upcoming newsletters for news about at least two new intervention studies starting this summer. One will focus on infant siblings of children with ASD, and one will involve social robotics for children with ASD between 5 and 10 years of age. Research helps us to understand how to help individuals on the autism spectrum achieve great things, and comes in many forms. One of our current research studies focuses on the impact of a free Care Navigator on families' attainment of health care information and services for their child with ASD. The Care Navigator meets with families during their assessment at CARD and helps families understand their child's medical, mental health, and ASD diagnoses; she also helps families connect with other health care providers within and outside of Kennedy Krieger Institute. And as always, we connect families with Pathfinders for Autism. For those of you who've participated in autism-related research at Kennedy Krieger Institute or elsewhere, you can know that you have done a great thing for others. I hope to see many friends and families turn out at the ROAR event on April 26th at Oregon Ridge! Warm regards,

Rebecca Landa

Nearly One Third of School-Aged Children with ASD Have ADHD Symptoms By Patricia Rao, PhD A recent study conducted at CARD found that 29 percent of school-aged children who met research diagnostic criteria for ASD also had symptoms of ADHD, a rate three times higher than the general population of children. Participants in this study included 162 children between the ages of four and eight years enrolled in our longitudinal study of child development. Participants were first divided into ASD and non-ASD groups. The groups were further categorized into ASD-Only and ASD plus ADHD groups according to parent-reported symptoms of ADHD on the Behavioral Assessment System for Children, Second Edition, a questionnaire that identifies the core symptoms of ADHD, such as whether or not children have trouble paying attention, waiting their turn, or remaining seated for extended periods of time. Although ASD can now be diagnosed as early as two years of age, ADHD is rarely diagnosed before the age of four years. We looked at young school-aged children because earlier identification of this subset of children will aid in the design of specialized interventions for children with both ASD and ADHD. Previous studies on the co-occurrence of ASD and ADHD were based on patients who typically had more complex or severe impairments. By recruiting patients as infants or toddlers, well before ADHD is typically diagnosed, our study offered novel insights into the earlier development and wider range of severity of ADHD symptoms in children with and without ASD. The results of the study also revealed that children in the co-occurring ASD plus ADHD group scored lower than the ASDOnly group on measures of cognitive and social functioning, and in the ability to function in everyday situations. They also were more likely to have more severe autism mannerisms and repetitive behaviors. These findings suggest that children with both ASD and ADHD may need different treatment modalities or intensities than those with ASD–Only in order to achieve better outcomes. According to Dr. Rebecca Landa, co-author of the study: ―We are increasingly seeing that ASD and ADHD co-occur. Understanding how ASD and ADHD relate to each other could ultimately lead to treatment that could improve outcomes and quality of life for this subset of children.‖ Study published in Autism: The International Journal of Research and Practice, Vol 13, 2014.

Free Upcoming STAR Trainings Sleep Issues in Children with Autism Spectrum Disorders–Wednesday, April 1, 11:30 a.m. to 12:30 p.m., presented by Jennifer Accardo, MD, MSCE Augmentative and Alternative Communication Supports for Children with Autism Spectrum Disorder– Wednesday, April 14, 11:30 a.m. to 12:30 p.m., presented by Melissa Subock, MS, CCC-SLP and Sharon Conty, MS, CCC-SLP Gastrointestinal (GI) Problems in Children with ASD–Wednesday, April 22, 12:30 p.m. to 1:30 p.m., presented by Eric Levey, MD Reading with Your Child: How to Make Books Fun and Interactive for Children with ASD–Wednesday, May 20, 11:30 a.m. to 12:30 p.m., presented by Megan Myatt, MS, CCC-SLP, and Stacey Booker, MS, CCC-SLP Taking Action to Sustain the Level of Care for Our Loved Ones: Peace of Mind Knowing You Are Doing the Right Thing–Wednesday, June 3, 11:30 a.m. to 12:30 p.m., presented by James W. Curran III, CFP, senior vice president, financial advisor for Morgan Stanley, and Monty Knittle, CFA, financial advisor for Morgan Stanley For more information or to register, visit kennedykriegercard.eventbrite.com. Did you know that all of our previous STAR trainings can be viewed online? To access the archive, visit the Outreach & Training section of the CARD website and click on ―STAR Parent Trainings.‖

”20 4 20” Partnership with Local Businesses During April, CARD is partnering with local businesses to promote ASD awareness and to raise funds for our clinical and research programs. Called ―20 4 20,‖ participating businesses will donate a percentage of their proceeds. For more details, visit kennedykrieger.org/CARD20 or scan the QR code to the right. Prior to visiting the businesses, be sure to download the flyer found on the website and present it at the business to ensure the proceeds go to CARD. Participating businesses include: Sunday, April 19 to Sunday, April 26, all day Available at all locations in the United States and online In-store customers: must identify that they are there for CARD's fundraiser Online: visit BN.com/bookfairs and enter the Bookfair ID, 11594769, at checkout

Tuesday, April 28, from 5 p.m. to 9 p.m. 1700 South Fountain Green Road, Bel Air, MD 21015

Monday, April 20, all day 7105 Reisterstown Rd, Baltimore, MD 21215

Tuesday, April 21 from 5 p.m. to 9 p.m. 21 E Cross St, Baltimore, MD 21230

Wednesday, April 22 from 3 p.m. to 8 p.m. 2849 Smith Avenue, Baltimore MD 21209

Monday, April 20 to Friday, April 25, will take donations 1615 Sulgrave Ave, Baltimore, Maryland 21209

Monday, April 20, all day 2622 Quarry Lake Dr, Baltimore, MD 21209

Monday, April 20 to Sunday, April 26, all day 9811 York Road, Cockeysville, MD 21030

Wednesday April 22, from 5 p.m. to 10 p.m. 3920 Pulaski Highway, Abingdon, MD 21009

Saturday, April 11, from 8 p.m. to 2 a.m. 133 W North Ave, Baltimore, Maryland 21201

Monday, April 20, all day 8706 Belair Road, Nottingham, Maryland 21236

Wednesday, April 22, all day 5 Bel Air South Parkway Bel Air, MD 21015

Saturday, April 25 from 7 a.m. to 8 p.m. 1700 Reisterstown Rd, Pikesville, MD 21208

4 Are you a business owner who wants to get involved? Contact Joy Johnson at 443-923-7616 for more information!

April Events in Honor of Autism Awareness Month Light It Up Blue: Kennedy Krieger will join Mayor Stephanie Rawlings-Blake and the Baltimore City Health Department for a press conference and countdown to flip the switch to illuminate City Hall in blue lights. Light It Up Blue is an international campaign launched by Autism Speaks, to have more than 200 notable buildings turn their lights blue in recognition of families affected by ASD.  

When: Thursday, April 2 from 7:45 p.m. to 9 p.m. Where: War Memorial Plaza, located in front of Baltimore City Hall, 100 N. Holliday Street

5th Annual ROAR Distinguished Scholar Lecture Event: This annual event educates the community and professionals about ASD and issues within the ASD community. This year, we are honored to host Joseph Piven, MD, who will give a talk titled Insights into Early Brain & Behavior Development in Autism. Dr. Piven is the Thomas E. Castelloe Distinguished Professor of Psychiatry, Pediatrics, and Psychology, and director of the Carolina Institute for Developmental Disabilities (CIDD) at the University of North Carolina.   

When: Tuesday, April 7, from 3:30 to 4:30 p.m., with a reception to follow Where: CARD large conference room, 3901 Greenspring Ave., Baltimore, MD 21211 Register at kennedykriegercard.eventbrite.com Paint for Autism: CARD has partnered with the Painted Palette to host ―Paint for Autism.‖ A custom painting will be created exclusively for the event and a qualified Painted Palette instructor will give show everyone how to create the masterpiece themselves! Fifteen percent of each ticket purchased will be donated to ASD research at CARD. When: Friday, April 17, at 7 p.m. Please arrive before 7 p.m. to allow for parking and check-in. Where: Bennett Gymnasium (L.E.A.P. Building), 3825 Greenspring Ave., Baltimore, MD 21211 Cost: $35 per person (includes all materials needed for the painting) Advanced Ticket Purchase Required. Register at kennedykrieger.org/paintforautism! 

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Honestly Autism Day: Kennedy Krieger School Programs and CARD are both proud sponsors of Honestly Autism Day, which is presented by the Partnership Project. The day brings together parents, families, caregivers, and individuals with ASD for activities, learning and fun.    

When: Saturday, April 18, from 7:45 a.m. to 4:00 p.m. Where: Radisson Hotel (formerly North Baltimore Plaza Hotel), 2004 Greenspring Dr., Timonium, MD 21093 Cost: $45/person Register at 123signup.com/HonestlyAutismDay2015

Trenditions Salon Cut-a-Thon: For the third consecutive year, the Trenditions hair salon is hosting a cut-a-thon to benefit CARD. The event will also include a raffle and 50/50 contest, with 100 percent of the proceeds going to Kennedy Krieger Institute.    

When: Sunday, April 19, from 10 a.m. to 6 p.m. Where: 1834 E. Joppa Road, Parkville, MD 21234 Cost: Shampoo, cut, and style will be $25. Shampoo and style will be $15. To make an appointment, call 410-661-4399 or visit kennedykrieger.org/cut-a-thon for more information.

See page 7 for information on ROAR, our annual fundraising event!

Research Findings on Siblings of Children with ASD By Eve LeBarton, PhD Through CARD’s research with siblings of children with ASD, we have learned a great deal about early development in children with ASD and their siblings. This research follows the development of siblings from infancy through early childhood and beyond when families opt to remain in the study for a longer period. We have found that the onset of diagnostically sufficient ASD symptoms occurs in some younger siblings of children with ASD by age 14 months while for others, that occurs later.1 In other words, the manifestation of ASD is often gradual, occurring after a period during which development appears, at least on the surface, to be relatively typical. In addition, the timing and pattern of early development in children with ASD is not the same for every child.2 The Baby Siblings Research Consortium, of which we are a member, found that there is a nearly one in five chance that a younger sibling of a child with ASD will also be diagnosed with ASD by three years of age.3 As a group, younger siblings of children with ASD more often show early signs of subtle developmental disruption compared to children with no family history of ASD. The earliest signs of developmental disruption to be detected involve gross motor (e.g., postural control)4,5 and fine motor difficulties (e.g., grasping and manipulating objects)6 appear by age 6 months in some siblings later diagnosed with ASD as well as in siblings who do not develop ASD. Over the second year, indicators of ASD risk include atypical eye contact,1 decreased social initiation and shared smiles,1,7 reduced response to others’ pointing gestures,8 decreased diversity of play behaviors,1 language delays,1,7,8 and motor coordination delays.1,2, 5 Even siblings of children with ASD who are not later diagnosed with ASD are at increased risk for social9,10 and language delays9 that continue through three years for some children.1,11 For instance, within the first year, gross motor skills are more likely to be delayed in siblings of children with ASD than in infants with no family history of ASD, and these early delays relate to language abilities at 18 months.9 Early fine motor difficulties, which can limit object exploration and play,12 have also been observed in these siblings.13 To address this, we designed mittens that could be worn by three-month-olds that helped them ―grasp‖ objects before this skill emerges naturally in development. After infants had experience with these mittens, they showed increased object exploration during play. Research with siblings of children with ASD increases understanding of how children develop and learn, which helps with the design of interventions to support development and guidelines for parents and doctors. References: 1

Landa, R. J., Holman, K. C., & Garrett-Mayer, E. (2007). Social and communication development in toddlers with early and later diagnosis of autism spectrum disorders. Archives of General Psychiatry, 64(7), 853-864. 2 Landa, R. J., Gross, A. L., Stuart, E. A., & Bauman, M. (2012). Latent class analysis of early developmental trajectory in baby siblings of children with autism. Journal of Child Psychology and Psychiatry, 53(9), 986-996. 3 Ozonoff, S., Young, G. S., Carter, A., Messinger, D., Yirmiya, N., ... & Stone, W.L. (2011). Recurrence risk for autism spectrum disorders: a Baby Siblings Research Consortium study. Pediatrics, 128(3), e488-e495. 4 Flanagan, J. E., Landa, R., Bhat, A., & Bauman, M. (2012). Head lag in infants at risk for autism: a preliminary study. American Journal of Occupational Therapy, 66, 577-585. 5 Bhat, A. N., Galloway, J. C., & Landa, R. J. (2012). Relations between early motor delay and later communication delay in infants at risk for autism. Infant Behavior and Development, 35(4), 838-846. 6 Libertus, K., Sheperd, K. A., Ross, S. W., & Landa, R. J. (2014). Limited fine motor and grasping skills in 6-month-old infants at high risk for autism. Child Development, 85(6), 2218-2231. 7 Landa, R., Gross, A. L., Stuart, E. A., Faherty, A. (2013) Developmental trajectories in children with and without autism spectrum disorders: The first 3 6 years. Child Development, 84(2), 429-442.

Sullivan, M., Finelli, J., Marvin, A., Garrett-Mayer, E., Bauman, M., Landa, R. (2007) Response to joint attention in toddlers at risk for autism Spectrum Disorder: A prospective study. Journal of Autism and Developmental Disorders, 37(1), 37-48. 9 Landa, R., & Garrett-Mayer, E. (2006). Development in infants with autism spectrum disorders: a prospective study. Journal of Child Psychology and Psychiatry, 47(6), 629-638. 10 Bhat, A. N., Galloway, J. C., & Landa, R. J. (2010). Social and non-social visual attention patterns and associative learning in infants at risk for autism. Journal of Child Psychology and Psychiatry, 51(9), 989-997. 11 Messinger, D., Young, G. S., Ozonoff, S., Dobkins, K., Carter, A., Zwaigenbaum, L., ... & Sigman, M. (2013). Beyond autism: a Baby Siblings Research Consortium study of high-risk children at three years of age. Journal of American Academy of Child and Adolescent Psychiatry, 52(3), 300-308.e1. 12 Bhat, A.N., Landa, R., Galloway, J. C. (2011) Current perspectives on motor functioning in infants, children, and adults with autism spectrum disorders. Journal of Physical Therapy, 91(7), 1116-29. 13 Libertus, K., & Landa, R. J. (2014). Scaffolded reaching experiences encourage grasping activity in infants at high risk for autism. Frontiers in Psychology, 5, 1-8.

Specialty Spotlight: Occupational Therapy By Sarah Welch, MS, OTR/L, and Erin Schultz, MS, OTR/L April is Occupational Therapy (OT) month! The OT department at CARD offers a variety of services that support children and adolescents’ participation in activities of daily living through direct intervention, group treatment, and caregiver training. The OT department at CARD is excited about some of our more recent accomplishments and programs. Last fall, we hosted the Assessment of Motor and Process Skills (AMPS) training course, which was attended by OTs from various states as well as other countries. The AMPS is a standardized assessment tool that evaluates a person’s quality of motor and process skills while performing everyday activities. After attending this intensive weeklong training, the OTs at CARD are working toward certification in administering this assessment. We plan to use this evaluation tool with adolescents and hope to expand services for this population to meet the growing need of this age group. To assist with these services, we are happy to welcome Melissa Teitelbaum. Melissa joins the OT department at CARD after 10 years working in other Kennedy Krieger School Programs. Melissa brings to the CARD team extensive expertise working with adolescents with a focus on addressing independence with age-expected life skills. Back row: Sarah Welch, Melissa Teitelbaum, Meghan Hinderer, Erin Shultz; Front row: Megan Owens, Valerie Hagerty, Teresa Anderson

Come ROAR with Us on Sunday, April 26 at Oregon Ridge Park for CARD’s Only Annual Fundraiser! As always, you can join us for the 5k race, low-mileage fun walk, and family festival! You can also double your impact on autism research by joining us in the ROAR for Autism CareFirst Challenge. CareFirst will match all funds raised on Wednesday, April 8th, up to $10,000! Why support ROAR? 

The proceeds from ROAR for Autism enable us to make major advances in understanding the causes of ASD, as well as in developing methods for earlier detection and more effective treatments of ASD.

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ROAR funds help us to mentor a new generation of young scientists and transfer the latest discoveries into models of clinical care that benefit individuals with ASD.

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ROAR also provides a way for us to come together to remind the community about ASD and the importance of embracing individuals with ASD. Through ROAR, many people have the opportunity to interact with and learn from individuals with ASD and their families in a fun setting. Visit roar.kennedykrieger.org or scan the QR code above to register!

Achievements Experience: Jennifer Jennifer, mother of Aiden, Elijah, and Elliot, has had all of her children participate in CARD’s Early Achievements and Achievements intervention programs. Jennifer first learned of these programs when Elliot was evaluated by Dr. Christine Hess as part of the early detection research study. Dr. Hess suggested that Elliot participate in the Early Achievements program, so he could get a jumpstart in development. Jennifer explained that throughout her children’s participation in Achievements, she had a phenomenal bond with all of the teachers and therapists. She said her children’s time at CARD provided them with a strong foundation for the future and taught them important and valuable life skills.

Jennifer (right) with Early Achievements teacher Cathy Walton

One of Jennifer’s favorite aspects of Achievements is that the children are ―in an environment where they are not judged.‖ She also said that her children loved the staff and were comfortable at CARD. Jennifer added that a huge benefit of participating in Achievements is that there are ―always resources available for any issue.‖ Jennifer saw substantial progress in her children during their involvement in Achievements. Her oldest son was nonverbal until the age of four and has since gained language. She also noticed an improvement in all of her sons’ communication and social skills. When asked what advice she’d give other parents of a child with ASD, Jennifer suggested that parents who have a child on a wait list participate in intervention research so they can receive more immediate help. She enrolled her children in every research study available at CARD, explaining that research is ―important as a parent of a child with autism, because it will help all kids with autism, not just your own.‖ She also recommended advocating that your child receive necessary public intervention services and that parents consider all avenues of treatment. Finally, Jennifer said that children have a tremendous ability to learn. She stressed the importance of not limiting your hopes for your children's outcome. ―Autism doesn’t define what your child can and can’t do,‖ she said. Check out our next issue to read about another family’s experience in Achievements!

Social Coaching Tips Eye Contact and Body Language: When giving feedback or redirection to your child, never end on a ―failure.‖ When you note what you would like to see changed, demonstrate or model the behavior, and help guide your child through to a successful experience of that skill, even if at a less complex level than initially targeted. Boundaries and Personal Space: Praise your child when he or she uses appropriate personal space, and remind your child to respect personal space and to back up when he or she is getting too close to others. Triggers and Coping Strategies: By helping your child to prepare for their triggers and utilize coping strategies you are strengthening their confidence that they are able to handle their triggers more effectively. For more on this topic see literature by Michelle Garcia Winner or Scott Bellini