CARD April 2014 Newsletter

3901 Greenspring Avenue, Baltimore, Maryland 21211

card.kennedykrieger.org

April 2014 • VOL. 7, ISSUE 2

Why I ROAR

By Jewell Thompson, CARD Staff and ROAR volunteer It’s that time of year again to ROAR for Autism! This will be my fourth year attending CARD’s annual event where family, friends, neighbors, and co-workers come out to have fun while raising funds and awareness of autism. Each year I serve as a volunteer assisting with registration and anything else that needs to be done.

It is a pleasure seeing all the families and teams who come to the event in support of one of their own children, or for the children as a whole.

Volunteering last year was especially moving for me because of the newly added 5K run. I, along with a few other co-workers, was responsible for rallying the runners into their respective lanes at the finish line. Oh what joy filled my heart when I saw some of our CARD patients coming over the hill racing towards the finish line! Not only did that animate me to jump up and down and cheer them on, but inside my heart was leaping for them. I could see their excitement and enthusiasm as they pushed their way to make it across the line. The sense of accomplishment and achievement on their faces brought sunshine to my day!

Come ROAR with us on Sunday, April 27 at Oregon Ridge Park for CARD’s only annual fundraiser!

Inside this issue Director’s Welcome

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National Children’s

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Study

Upcoming STAR Trainings

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New this year!  The 2014 5k course is newly redesigned and will feature a complete road race.  The Cara Becker Fundraising Award will be given to the child or adolescent who best encompasses Cara's spirit through fundraising initiatives.

As always, you can join us for the:  25-mile bike ride  5k race  Low mileage fun walk  Family festival Visit http://roar.kennedykrieger.org or scan the QR code for more information!

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CARD is Helping with the National Children’s Study

By Emily Watkins, MS The Center for Autism and Related Disorders (CARD) has teamed with researchers across the country to help determine how best to screen for autism spectrum disorder (ASD) in the National Children’s Study, which is funded by the National Institutes of Health. The National Children’s Study is a multi-year research study that will examine the effects of environmental influences on the health and development of more than 100,000 children across the United States, following them from before birth until age 21. The goal of the study is to improve the health and wellbeing of children. One of the many things this study will be screening for is the presence of ASD. CARD, along with ten universities across the United States, is comparing three different ASD screening tools to help determine the most appropriate screener to be used in the National Children’s Study. One of these three tools is Dr. Rebecca Landa’s own Video-Guided Parent Report (VGPR). This is an online tool through which parents watch videos of children’s behaviors and answer questions about their child’s behavior, based on what they see in these videos. The second screener is a brief parent interview in which an interviewer asks parents specific questions about their child’s development. The third screener is an observation of the child by an examiner during a short play activity. Each individual screener takes about 30 minutes to complete.

In order to determine which one will be used for the National Chidren’s Study, research participants come to our lab to complete all three screeners. The data from these screeners is then compared to the participant’s clinical evaluation given by doctors and clinicians here at CARD or in Kennedy Krieger Institute’s Center for Development and Learning. Upon the culmination of this project, the ten collaborating sites will determine which of these three screeners most consistently and accurately agrees with the clinicians’ diagnoses and impressions. Stay tuned for the results!

To learn more about the National Children’s Study please visit: http://www.nationalchildrensstudy.gov Dear Friends, It is April and that means Autism Awareness Month! This is a time to share insights about ASD with family and friends, and to extend our hand to those whose lives are touched by ASD when they need a lift. It is also a time when those of us dedicated to improving the lives of individuals with ASD kick it up a notch! During April, we offer weekly free lectures by autism experts. We also have our only and annual fund raising event for autism research- ROAR. This event is important for many reasons, and here are but a few:

3. As findings emerge from our research, we share our knowledge with other scientists, families, and providers. We have two studies underway right now that involve translating evidence-based interventions for use in public school settings. The impact of this work is enormous, and would not have been possible without the support of donors and the ROAR event! In this newsletter, we have listed our publications from 2013. In addition, we have given scientific and educational presentations, workshops and trainings all over the world.

Please share the word with friends and family about the opportunity to become an agent of change for autism by supporting ROAR. There are many ways to enjoy this special 1. Discoveries made through high quality research into the event: come out to beautiful Oregon Ridge to walk, run, bike, causes, diagnosis, prognosis, and treatment of ASD is essential hike, or play and picnic with family and friends. Or- if life is to promoting a high quality of life for individuals with ASD too busy or you need to simply rest at home that day- give and their family members. online as you 'snore for ROAR'! Thank you for doing what 2. To fund this research, community support is essential. With you can to help others experience joy and fulfillment in their funds raised through your generous gifts, no matter what size, lives. You CAN make a difference! we purchase essential state-of-the-art research equipment and Sincerely, train the next generation of researchers. We also conduct pilot studies that provide results needed to secure larger, federal funding for large-scale scientific studies. In 2013, we secured four new grants (described in the insert of this newsletter).

Questions or Comments? Please email: CARDnewsletter@kennedykrieger.org

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Beyond the Book: A Multifaceted Approach to Reading

By Hattie DeLisle, teaching assistant in the Early Achievements classroom After enduring an extremely cold and snowy winter, we are all ready for the spring thaw.

One of the many benefits that accompany spring is that reading books can become an active, outdoor learning experience. After your child has read or listened to you read, take the story outside and use three-dimensional examples to support the characters, objects, or events present in the book. This activity is one that can be modified to meet a wide range of educational needs and affords cognitive, developmental, and social opportunities by connecting book examples to tangible things that occur in the world. Below are several different methods for adapting this book reading strategy.

Early Learners: Pick a spring-related book like The Very Hungry Caterpillar or Mouse’s First Spring that will reflect things present in nature during this season. After reading, take the book outside on a walk or wagon ride and point out, label, and explore objects mentioned in the story.

Young Adventurers: Read a nature-themed book like Ouch! or It’s Spring and then take your child outside for a scavenger hunt for the items mentioned in the story. Recreate the book by placing objects that were in the book outside for your child to find, or go somewhere you might find them naturally, like a park, playground, or beach.

Those with Creative Imaginations: Give your child a choice of two different spring-related adventure books. You can choose books from a variety of reading levels for this activity, from Abe Lincoln at Last and Leprechauns in Late Winter to The Magic Tree House series, or something short like Tommy dePaola’s The Prince of the Dolomites. After reading, choose a part of the book to reenact using costumes and props from around the house. This activity can be modified to fit your child’s specific needs, and can also work as a way to encourage play with friends. Different ways to vary this activity include helping to assign character roles, asking questions like “What could we use as a cape?” or “Which one do you want for your magic wand: a wooden spoon or a pencil?” and helping to come up with lines or a script.

Advanced Life Skills: Encourage your son or daughter to read a book that relates to one of his or her preferred spring outings, like a trip to an ice cream shop or a picnic. After finishing the book, allow your child to contribute to planning the outing and then execute the plan. This can be as simple as giving your child a budget for ice cream and having him or her plan the time, location, and transportation. You can modify this activity by adding steps that involve earning money for the trip, estimating trip cost, and listing needed materials. Refer your child to the book for help in execution when possible.

Employee Spotlight—

Free Upcoming STAR Trainings for April and May Making Sense of Sensory Processing - Wednesday, April 9, 11:30 a.m. to 12:30 p.m., presented by Meghan Hinderer, MOT, OTR/L, and Sarah Welch, MS, OTR/L Sleep Issues in Children with Autism Spectrum Disorder - Wednesday, April 16, 11:30 a.m. to 12:30 p.m., presented by Jennifer Accardo, MD, MSCE ADHD Symptoms in ASD: Symptom Evaluation and Medication Choice - Wednesday, April 23, 11:30 a.m. to 12:30 p.m., presented by Rajneesh Majahan, MD Gastrointestinal (GI) Problems in Children with ASD - Wednesday, April 30, 11:30 a.m. to 12:30 p.m., presented

by Eric Levey, MD Understanding the Parent-Child Feeding Relationship - Wednesday, May 14, 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 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.”

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Spring Into Awareness!

By Jessica Elwell, MS, CCC-SLP After a long and cold winter, it’s time for everyone to dust themselves off, breathe in some fresh air, and take action in their communities! Why not start by bringing awareness to communication disorders which impact the social, academic, and vocational lives of millions of people?

Next month marks the 87th annual Better Hearing and Speech Month, designated by the American SpeechLanguage-Hearing Association (ASHA). This event was created in order for parents and professionals to help raise awareness of communication disorders. It’s also a great way to promote treatment that can help improve the quality of life of individuals who experience difficulties with understanding, speaking, or hearing.

Many parents are uninformed about what steps to take to better help their children learn, socialize, and communicate to the best of their abilities. Without access to essential services, people with communication disorders can be at a lifelong disadvantage. However, research shows that early identification and intervention programs can positively impact outcomes across various areas of development (e.g., language, cognition, social-emotional).

Speech-language pathologists and audiologists are professionals certified in prevention, identification, and treatment of communication impairments. Communication disorders in children often go unnoticed for months or even years due to lack of public awareness. Some early signs of speech, language, and hearing difficulties in children are listed below.

Signs of Speech and Language Difficulties: Signs of Hearing Difficulties:  Does not interact socially (infancy and older)  Lack of attention to sounds (all ages)  Does not follow or understand what you say (starting at  Does not follow simple directions/respond when called 1 year) (10-12 months)  Says only a few sounds, words, or gestures to  Delays in speech and language development (starting at communicate with others (18 months to 2 years) 12 months)  Words are not easily understood (18 months to 2 years)  Socially isolated and unhappy in school (starting at  Does not combine words into phrases (starting at 2 preschool) years)  Pulls or scratches at their ears (all ages)  Struggles to say sounds or words (3 to 4 years)  Persistent ear discomfort after exposure to loud noise (all ages) Parents who think their children are displaying some of these warning signs should contact a certified speech-language pathologist and/or audiologist in order to learn how to best support their children’s needs. It’s vital for parents and professionals to spread the word in order to encourage others to seek help when needed.

At the Center for Autism and Related Disorders (CARD), our speech-language pathologists are multifaceted and provide many specialized services including individual and team evaluations, individual and group treatment, social skills training, consultations, and parent training for children of all ages. If you or someone you know has concerns about a child’s development, schedule an appointment with us today at 443-923-9400.

What will you do to help spread awareness this year? For more information about speech-language pathology, audiology, and Better Hearing and Speech Month, please visit the American Speech-Language-Hearing Association (ASHA) website at: http://www.asha.org/bhsm

Registration is now open for CARD’s 14th Annual Autism Conference!

The conference will take place on October 16-17, 2014 at the North Baltimore Plaza Hotel in Timonium. Early bird rates are in effect!

Visit http://www.autismconference.kennedykrieger.org or scan the QR code to the left for more information!

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Everyone wants to experience life to its fullest. We rely on good solid scientific information to be sure that we provide our children and ourselves with experiences that will enrich learning and healthy brain development, and are able to detect problems early so that appropriate interventions can be put into place for optimal outcomes. To get this solid scientific information, we need research. Researchers at CARD are busy applying for grants every year, and conducting the science that these grants support. Obtaining these grants is extremely competitive and receipt of a funding award indicates that the proposed research was stellar.

U.S. Department of Health and Human Services—Health Resources and Services Administration (HRSA) In August of 2013, the U.S. Department of Health and Human Services, Health Resources and Services Administration awarded the Center for Autism and Related Disorders (CARD) a R40 MCH Autism Intervention Research grant for a threeyear project. The specific objective of this project is to advance solutions that address barriers impeding the delivery of evidence-based (EB) early intervention (EI) services to toddlers with or at risk for autism spectrum disorders (ASD) and their caregivers, particularly those from minority and under-resourced families. The goal is to address these barriers through the provision of EB EI training and coaching of practitioners in the Baltimore County Infants and Toddlers program. This research will lead to methods that will better equip early intervention providers to enhance child outcomes. Ms. Emily Watkins serves as the project coordinator, and Ms. Natasha Lawson as the research assistant.

AETNA CARD is excited to announce a partnership with Aetna Clinical Innovation Labs to implement a Clinical Services Navigator (CSN) for children with an ASD and other co-occurring diagnoses. Currently, many health care professionals working with children with ASD primarily focus on ASD symptomatology and related behaviors at the expense of other comorbid concerns (e.g. psychiatric, GI, or sleep issues). The over-arching goal of this project is to improve patient care and family satisfaction with services received at CARD. The CSN aims to assist families as they navigate through the varied services and interventions their child may receive, coordinating appointments and facilitating collaboration between service providers. Additionally, the CSN will follow up to make sure families have their concerns addressed, and needs met. After this initial partnership with Aetna, CARD hopes to secure funding to make a CSN available to all families receiving services in the clinic. The Aetna funding will also support a developmental wellness initiative for infant and toddler-aged siblings of children with ASD. Stay tuned for more exciting information about this project. Dr. Landa is the project leader, supported by Ms. Melanie Pinkett-Davis as co-leader, Ms. Amy Schrembs as project coordinator and CSN, Dr. Deepa Menon as Associate Medical Director, Mr. Jason Neely as informatics coordinator, and Ms. Taylon Johnson as research assistant.

Autism Speaks The prevalence and characteristics of youth and transition-age adults who experience psychiatric crisis will be studied

by Dr. Roma Vasa, child psychiatrist and principal investigator, through funding from Autism Speaks. This study will also examine how parents and providers respond to these crises. Dr. Vasa and her colleagues, Mr. Luke Kalb and Dr. Louis Hagopian, will work collaboratively with the Interactive Autism Network (IAN) to conduct this study. This work will include the development of a psychiatric crisis assessment tool that can be used in clinical and research settings. The findings will advance the ability of physicians and emergency room professionals to improve the psychiatric well-being for people with ASD.

NIH/NIMH Research into abnormalities of sensory inhibition in autism will be studied by Dr. Richard Edden and Dr. Stewart Mostofsky, Medical Director of CARD, with funding from the National Institute of Mental Health. To investigate the relationship between inhibition and sensory dysfunction in autism, the scientific team will use MR Spectroscopy and behavioral psychophysics. This research will lead to new insights into the sensory difficulties that bring challenges to the everyday experiences of many people with ASD.

Publications from CARD Researchers in 2013   

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Accardo J, Reesman J. Can you hear me snore? Journal of Clinical Sleep Medicine 2013, 9(11), 1221-3.

Barber AD, Caffo BS, Pekar JJ, Mostofsky SH. Effects of working memory demand on neural mechanisms of motor response selection and control. Journal of Cognitive Neuroscience 2013, 25(8), 1235-48.

Di Martino A, Yan CG, Li Q, Denio E, Castellanos FX, Alaerts K, Anderson JS, Assaf M, Bookheimer SY, Dapretto M, Deen B, Delmonte S, Dinstein I, Ertl-Wagner B, Fair DA, Gallagher L, Kennedy DP, Keown CL, Keysers C, Lainhart JE, Lord C, Luna B, Menon V, Minshew NJ, Monk CS, Mueller S, Mϋller RA, Nebel MB, Nigg JT, O'Hearn K, Pelphrey KA, Peltier SJ, Rudie JD, Sunaert S, Thioux M, Tyszka JM, Uddin LQ, Verhoeven JS, Wenderoth N, Wiggins JL, Mostofsky SH, Milham MP. The autism brain imaging data exchange: towards a large-scale evaluation of the intrinsic brain architecture in autism.

Molecular Psychiatry 2013 Jun 18, Epub ahead of print.

Fair DA, Nigg JT, Iyer S, Bathula D, Mills KL, Dosenbach NU, Schlaggar BL, Mennes M, Gutman D, Bangaru S, Buitelaar JK, Dickstein DP, Di Martino A, Kennedy DN, Kelly C, Luna B, Schweitzer JB, Velanova K, Wang YF, Mostofsky S, Castellanos FX, Milham MP. Distinct neural signatures detected for ADHD subtypes after controlling for micro-environments in resting state functional connectivity MRI data. Frontiers in Systems Neuroscience 2013, 6, 80.

Farmer JE, Clark MJ, Mayfield WA, Cheak-Zamora N, Marvin AR, Law JK, Law PA. The relationship between the medical home and unmet needs for children with Autism Spectrum Disorders. Maternal and Child Health Journal 2014, 18(3), 672-80.

Frazier TW, Youngstrom EA, Embacher R, Hardan AY, Constantino JN, Law P, Findling RL, Eng C. Demographic and clinical correlates of autism symptom domain and autism spectrum diagnosis. Autism 2013 Oct 8. Epub ahead of print.

Jacobson LA, Ryan M, Denckla MB, Mostofsky SH, Mahone EM. Performance lapses in children with Attention-Deficit/ Hyperactivity Disorder contribute to poor reading fluency. Archives of Clinical Neuropsychology 2013, 28(7), 672-83.

Landa RJ, Gross AL, Stuart EA, Faherty A. Developmental trajectories in children with and without Autism Spectrum Disorders: the first 3 years. Child Development 2013, 84(2), 429-42.

Libertus K, Landa RJ. The Early Motor Questionnaire (EMQ): a parental report measure of early motor development. Infant Behavior and Development 2013, 36(4), 833-42.

Marsh KL, Isenhower RW, Richardson MJ, Helt M, Verbalis AD, Schmidt RC, Fein D. Autism and social disconnection in interpersonal rocking. Frontiers in Integrative Neuroscience 2013, 7, 4.

Mazurek MO, Kanne SM, Wodka EL. Physical aggression in children and adolescents with Autism Spectrum Disorders.

Research in Autism Spectrum Disorders 2013, 7(3), 455-65.

Mazurek MO, Vasa RA, Kalb LG, Kanne SM, Rosenberg D, Keefer A, Murray DS, Freedman B, Lowery LA. Anxiety, sensory over-responsivity, and gastrointestinal problems in children with Autism Spectrum Disorders. Journal of Abnormal Child Psychology 2013, 41(1), 165-76.

Nebel MB, Joel SE, Muschelli J, Barber AD, Caffo BS, Pekar JJ, Mostofsky SH. Disruption of functional organization within the primary motor cortex in children with autism. Human Brain Mapping 2014, 35(2), 567-80.

Puts NA, Edden RA, Wodka EL, Mostofsky SH, Tommerdahl M. A vibrotactile behavioral battery for investigating somatosensory processing in children and adults. Journal of Neuroscience Methods 2013, 218(1), 39-47.

Rao PA, Landa RJ. Association between severity of behavioral phenotype and comorbid Attention Deficit Hyperactivity Disorder symptoms in children with Autism Spectrum Disorders. Autism 2013, 18(3), 272-80.

Rosenberg RE, Law JK, Anderson C, Samango-Sprouse C, Law PA. Survey of vaccine beliefs and practices among families affected by Autism Spectrum Disorders. Clinical Pediatrics 2013, 52(9), 871-4.

Shiels Rosch K, Dirlikov B, Mostofsky SH. Increased intrasubject variability in boys with ADHD across tests of motor and cognitive control. Journal of Abnormal Child Psychology 2013, 41(3), 485-95.

Wodka EL, Mathy P, Kalb L. Predictors of phrase and fluent speech in children with Autism and severe language delay.

Pediatrics 2013, 131(4) e1128-34.

Zablotsky B, Anderson C, Law P. The association between child autism symptomatology, maternal quality of life, and risk for depression. Journal of Autism and Developmental Disorders 2013, 43(8), 1946-55.

Zablotsky B, Bradshaw CP, Anderson C, Law PA. The association between bullying and the psychological functioning of children with Autism Spectrum Disorders. Journal of Developmental & Behavioral Pediatrics 2013, 34(1), 1-8.

Zablotsky B, Bradshaw CP, Anderson CM, Law P. Risk factors for bullying among children with Autism Spectrum Disorders.

Autism 2013 Jul 30. Epub ahead of print.