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Transitions Over the Life Course For Individuals with Autism

Early identification of and intervention for autism spectrum disorder (ASD) have traditionally garnered a significant portion of public attention and spending. However, with an estimated 60,000 youth on the autism spectrum turning 18 years old in 2016*, understanding the factors associated with risk and resilience in adulthood is of significant public health importance. Notably, both research and anecdotal accounts indicate that adults with autism tend to suffer from poor life course outcomes, including but not limited to unemployment, underemployment, and social disengagement. The Health Care Transitions Research Network (HCTRN) was thus designed as an interdisciplinary, multi-center research forum for scientific collaboration and infrastructure-building, with a focus on research designed to improve health care transitions and promote an optimal transition to adulthood among youth and young adults with ASD .



Language Barriers Impact Access to Services for Children with Autism Spectrum Disorders Journal of Autism and Developmental Disorders

Racial and ethnic disparities in accessing health care have been described in children with autism spectrum disorder (ASD). In a retrospective chart review of 152 children with ASD, children of parents whose primary language was English were significantly more likely to have both social skills and communication goals within their individualized education plan (IEP) compared to children of parents whose primary language was not English.



Transitioning Together: A Multi-family Group Psychoeducation Program for Adolescents with ASD and Their Parents (WI UCEDD/LEND)

Currently there are few evidence-based programs available for families of individuals with ASD during the transition to adulthood. The present study provided a preliminary evaluation of a multi-family group psychoeducation intervention using a randomized waitlist control design (n = 41). Families in the intervention condition participated in Transitioning Together, an 8-week program designed to reduce family distress and improve social functioning for adolescents.



Android Robot-Mediated Mock Job Interview Sessions for Young Adults with Autism Spectrum Disorder: A Pilot Study

The feasibility and preliminary efficacy of an android robot-mediated mock job interview training in terms of both bolstering self-confidence and reducing biological levels of stress in comparison to a psycho-educational approach human interview was assessed in a randomized study.Young adults with ASD were randomized to participate either in a mock job interview training with our android robot system or a self-paced review of materials about job-interviewing skills.



Do Early Caregiver Concerns Differentiate Girls with Autism Spectrum Disorders?

Given that early caregiver concerns may be different for children who go on to receive a diagnosis of autism spectrum disorder versus another developmental disability, early caregiver concerns may differ for girls. Using a community-based sample of children (n = 241), we examined the extent to which gender differences may be related to caregiver concerns prior to a diagnosis of autism spectrum disorder or other developmental disability.



Mid-life Social Outcomes for a Population-based Sample of Adults with ASD

Adults with autism spectrum disorders (ASD) fall short of social outcomes of non‐ASD peers in mid‐life, as documented by currently published research. The aim of the current study was to extend what is known about social functioning, employment, independent living, and use of social services by examining details of the current life status for a population‐based sample of adults with ASD (mean age = 35.5 years, range = 22.2�51.4). We collected outcome data via direct assessment and informant report for 169 individuals. Three‐fourths of the sample had cognitive abilities in the intellectually disabled range. Social functioning outcomes, as a single measure, mirror those reported previously for other samples, including samples with a high proportion of individuals with normal range intellectual abilities, with 20% achieving the most independent outcomes and 46% requiring high levels of support across most life areas. Participant subgroups who achieved maximal outcomes represented a range of social and intellectual abilities for several outcome metrics. Participants used high levels of public and private supports, yet specific areas of clear, unmet need were also identified.



SPARK: A US Cohort of 50,000 Families to Accelerate Autism Research

The Simons Foundation Autism Research Initiative (SFARI) has launched, a dynamic platform that is engaging thousands of individuals with autism spectrum disorder (ASD) and connecting them to researchers. By making all data accessible, SPARK seeks to increase our understanding of ASD and accelerate new supports and treatments for ASD.



Largest Group of Act Early Ambassadors in History Complete Annual Training at NCBDDD/CDC

Twelve newly selected Act Early Ambassadors joined forces with a veteran cohort of forty-three Act Early Ambassadors representing 50 states and 4 territories on the campus of the Centers for Disease Control and Prevention (CDC) for the Annual Act Early Ambassador Training on March 14 & 15, 2018 hosted by the Learn the Signs. Act Early. Team at the National Center on Birth Defects and Developmental Disabilities (NCBDDD)/CDC along with project partners from the Association of University Centers on Disabilities (AUCD) and the Association of Maternal and Child Health Programs (AMCHP).



Vanderbilt Kennedy Center (TN UCEDD, LEND, IDDRC) TRIAD Study Affirms Effectiveness, Promise of Telemedicine for Autism Evaluations

Researchers at the Vanderbilt Kennedy Center (TN UCEDD, LEND, IDDRC) Treatment and Research Institute for Autism Spectrum Disorders (TRIAD) have found that autism spectrum disorder (ASD) can be accurately diagnosed in young children via remote, telemedicine assessments, a method that could significantly increase access and reduce wait times for autism services.



The Center for Leadership in Disability Co-Hosts 10th Annual Georgia Positive Behavior Support Conference (GA UCEDD/LEND)

The Center for Leadership in Disability (CLD) in the School of Public Health at Georgia State University (GSU), co-hosted the 10th-annual Georgia Association of Positive Behavior Support (Georgia APBS) conference on November 28-29, 2017. The 2017 Georgia APBS Conference had over 100 presentations and 1,400 registrants. Georgia APBS is a network state under the national Association for Positive Behavior Support ( According to the Association for Positive Behavior Support, positive behavior support is defined as "a set of research-based strategies used to increase quality of life and decrease problem behavior by teaching new skills and making changes in a person's environment.



Vanderbilt Consortium LEND

The Vanderbilt Consortium LEND program has provided far reaching opportunities for trainees to gain expertise in family-centered care, to become familiar with community resources, and to develop an interprofessional problem solving mindset. In addition to providing rigorous leadership training and an intensive 24-week core series on topics ranging from life course to ethics, from specific diagnoses to medical home, from newborn screening to policy, the core curriculum and leadership seminars have reinforced the importance of interprofessional and family-centered care within the healthcare setting. These learning experiences have aided our understanding of our role as part of a healthcare team and have helped expand our knowledge of the roles of other professionals we work alongside.

Photo: Joanna Onorato, Outreach Coordinator for the MVMC, and Audrey Graham, Developmental Specialist for the South East Early Intervention Program.


South East Early Intervention Program Receives Award (UT UCEDD)

The South East Early Intervention Program at the Center for Persons with Disabilities was recently honored as the Community Partner of the Year by the Moab Valley Multicultural Center (MVMCC) for its efforts in "building bridges across language and culture through family support, community collaboration, and education." The program, which began in 2011, is a home-based program serving children from birth to 3 who are at risk of having developmental delays, or are diagnosed with a disability.



Expanding Statewide Developmental Screening and Monitoring through Deputy Ambassador Network

By Robin Hansen, MD

Our AMCHP State Systems grant has identified "LTSAE Deputy Ambassadors" from across the state to assist the State Ambassadors in disseminating information about LTSAE in order to support the use of these resources as a component of Child Find and parent supported developmental monitoring. During our first two years of this grant, we have recruited thirty "Deputy Ambassadors" canvasing the entire state of California. We have worked with the California Autism Professional Training and Information Network (CAPTAIN), which is an existing statewide network of trainers from our education system, developmental disabilities (Part C) system and family resource centers.



Women Investing in Nebraska invest in Munroe-Meyer Institute (UCEDD/LEND)

An $85,000 grant from Women Investing in Nebraska (WIN) will boost efforts to help infants who spent time in a neonatal intensive care unit get needed medical assessment and treatment through the University of Nebraska Medical Center's Munroe-Meyer Institute (MMI).



Reducing Relapse Focus of New Study at MMI (NE UCEDD/LEND)

The Munroe-Meyer Institute's Brian Greer, Ph.D., will be the site PI on a new grant written with principal investigator Timothy Shahan, Ph.D., of Utah State University, that will explore ways to reduce relapse in children who engage is severe problem behavior.

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