Developments, April 2017
Wednesday, April 12, 2017
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Developments is a newsletter for Autism CARES programs funded under MCHB. The content of this newsletter has been generated by program staff and trainees, and does not necessarily reflect the views and policies of HRSA-MCHB. No official support or endorsement by HRSA-MCHB is intended or should be inferred. This publication is funded in part by cooperative agreement #UA5MC11068.
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The New Hampshire-Maine Leadership Education in Neurodevelopmental and Related Disabilities (NH-ME LEND) Program was recently selected to participate in the 2017 Diversity & Health Equity Peer Learning Collaborative, supported by the Maternal and Child Health (MCH) Bureau, Division of MCH Workforce Development. 
MNLEND 2014-15 Fellow, Jocelyn Bessette Gorlin PhD, RN, CPNP, Assistant Professor, Department of Nursing, Saint Catherine University, recently published an article in the Journal of Pediatric Nursing based upon her earlier MNLEND research project and dissertation. Her research examined the experiences of families living with a child with severe autism. 
The Autism Spectrum Center at Boston Children's will celebrate autism awareness month with a number of activities to raise awareness and to promote our Autism Friendly Hospital Initiative. This institution wide effort is aimed to ensure a positive experience for children, families and staff through training, preparation and support during visits and procedures. The initiative includes multiple projects, many led by former and current LEDBP and LEND fellows. 
"Sharing Hope, The stories of our patients and families" is a booklet of personal stories shared by 27 generous families who have family members with developmental disabilities and receive care through the Cincinnati Children's Hospital Medical Center, Division of Developmental and Behavioral Pediatrics (CCHMC-DDBP). This booklet was created by the DDBP-Family Advisory Council (DDBP-FAC) and accomplished through a generous grant from the Jack Rubinstein Foundation. 
An African proverb states "It takes a village to raise a child." However, it also takes parents with a demonstrated passion and relentless drive to impact the success of their children beyond high school, especially when that child has a disability. This past January, Virginia LEND Trainees, Kate Flinn and Tammy Clamann who both have sons in high school who are on the Autism spectrum (ASD), held the first meeting of the Richmond-area Consortium on Level I-II Autism College Student Transition at Virginia Commonwealth University (VCU). 
The Autism Intervention Research Network on Physical Health (AIR-P), led by Karen Kuhlthau, PhD, conducts research on evidence-based interventions to improve the physical health and well-being of children and adolescents with autism spectrum disorders (ASD) and other developmental disabilities, with an emphasis on underserved communities. 
The AIR-B3 network - UCLA, UC Davis, University of Pennsylvania, University of Rochester, and Drexel University - has continued to develop strong partnerships within our local communities. Understanding the importance of community collaboration to design effective interventions for under-resourced communities, the network continues to collaborate and disseminate information about autism through community conferences, community involvement, and direct participation in community organizations.
Current research is beginning to suggest that propranolol, a drug originally developed to control blood pressure and heart rate by blocking beta-adrenergic receptors, which is also used for performance anxiety, might be helpful in autism spectrum disorders (ASD). However, the mechanism by which this occurs is not entirely known. Our team examined how propranolol affected interactions between brain regions, or functional connectivity (FC), with functional magnetic resonance imaging (fMRI). We examined this in both those with ASD and in those without ASD. We found that the effect of this drug depended on the network examined. 
Current research is beginning to suggest that propranolol, a drug originally developed to control blood pressure and heart rate by blocking beta-adrenergic receptors, which is also used for performance anxiety, might be helpful in autism spectrum disorders (ASD). However, in order to move forward to clinical trials, it is important to first establish what measures are most likely to demonstrate a response to the drug. Therefore, we determined whether single doses of propranolol could affect verbal problem solving in ASD. Twenty participants received either propranolol or placebo in a within-subject crossover study performed in a double-blinded, counterbalanced manner.
AMCHP's State Public Health Autism Resource Center (SPHARC) has released several new resources and technical assistance opportunities designed to aid and assist Autism and other Developmental Disabilities (ASD/DD) grantees.
The Center for Leadership in Disability (CLD) led a series of Parent Academies that focused on caregivers of children, ages three to five, who demonstrate persistent challenging behaviors. Eight cohorts of parents completed five 2-hour sessions in settings ranging from public and private schools, to churches and community agencies. The goal of the Parent Academy was to teach participants about positive behavior and visual supports strategies to prepare them to address their child's challenging behaviors and improve developmental outcomes.
Got Transition and the American Academy of Pediatrics released a new 2017 Transition Coding and Reimbursement Tip Sheet to support the delivery of recommended transition services in pediatric and adult primary and specialty care settings. The new tip sheet includes a list of updated transition-related CPT codes, including the new code for transition readiness assessment, and current Medicare fees and RVUs for these services. It also includes a new set of seven clinical vignettes with recommended CPT and ICD-10 codes.
OAR released A Guide to Safety, the newest installment of the Life Journey Through Autism series. Since then, OAR has distributed over 3,000 copies to homes, classrooms, fire and police departments, and resource libraries. Designed with families, educators, and first responders in mind, the goal is to give readers the tools and resources they need to address their autism safety issues. Written in collaboration with key stakeholders and experts within the autism community, A Guide to Safety includes life-saving tips, strategies, and tools to help families strengthen their safety plans. 
Using magnetic resonance imaging (MRI) in infants with older siblings with autism, researchers from around the country were able to correctly predict 80 percent of those infants who would later meet criteria for autism at two years of age.The study, published today in Nature, is the first to show it is possible to identify which infants - among those with older siblings with autism - will be diagnosed with autism at 24 months of age. 
This webinar will provide an overview of the Zika virus infection, updated case numbers for infants with congenital Zika virus infection, and useful resources for families and EI professionals. Findings on the potential clinical manifestations of congenital Zika virus infections will be discussed as well as the still evolving clinical, policy, and research implications for early intervention professionals.
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