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2015 Autism Awareness: Highlights From Around the Network

Hill Briefing on Autism and the Aging Out Crisis:

Last week, Congressmen Chris Smith (R-NJ) and Mike Doyle (D-PA), Co-Chairs of the Bipartisan Autism Caucus, hosted a congressional Hill briefing on "Autism and the Aging Out Crisis." The briefing featured experts on Autism Spectrum Disorder (ASD) and transition planning, including AUCD member Dr. Anthony Antosh, Director of the Paul V. Sherlock Center on Disabilities at Rhode Island College (UCEDD) and self-advocates including Jonathan Kratchman, a high school senior. Dr. Antosh spoke specifically about the gap in services young adults with ASD and other developmental disabilities experience when they graduate from high school, and how federal and state agencies can help bridge this gap. He also highlighted a monograph developed by the AUCD network entitled A Collaborative, Interagency Approach to Transition, available on the Association's website. Dr. Paul Shattuck of the the A.J. Drexel Autism Institute also discussed a recently published report entitled "National Autism Indicators Report: Transition into Young Adulthood," which focuses on transition for youth with ASD. The full briefing can be viewed on YouTube.

AUCD monograph on transition Exit Disclaimer

Drexel report on Transition Exit Disclaimer

DMCHWD Grantee Spotlights:

Georgia Leadership & Education in Neurodevelopmental Disabilities (GaLEND)

Georgia LEND group

Georgia LEND Group

GaLEND is an interdisciplinary training program for future professionals, disability advocates, and family members. GaLEND operates as a program of the Center for Leadership in Disability (CLD) at Georgia State University (GSU), in collaboration with the Satcher Health Leadership Institute at Morehouse School of Medicine (MSM) and the National Center on Birth Defects and Developmental Disabilities of the Centers for Disease Control and Prevention.

Autism Conference & Exposition of Georgia

The Autism Conference & Exposition of Georgia is a product of a powerful alliance of leading autism agencies, self-advocates, and family members. This statewide conference is an important strategy in the implementation of the Autism Plan for Georgia.

Autism Conference & Expo of Georgia Exit Disclaimer


Highlighting Developmental Behavioral Pediatrics

Stanford University: "Parent-reported Shared Decision-Making: Autism and Other Neurodevelopmental Disorders"
DBP Fellow: Lauren M Hubner MD MPH
Dr. Hubner, a second year fellow in DBP, undertook a secondary data analysis to understand the perceptions among parents of children with autism about their engagement in... Read More


photo of Neha Patel

University of Oklahoma: Our 3rd year fellow, Neha Patel, is currently working on her fellowship research study, which involves exploring how families who have a child with autism participate in family rituals, or activities that are meaningful for families. Decreased engagement in family rituals results in loss of family identity and cohesion. Past studies in families with members affecteds... Read More


photo of Anacani Fonseca

Medical University of South Carolina: Anacani Fonseca is a first year fellow in Developmental and Behavioral Pediatrics training program at the Medical University of South Carolina. She is also participating as a LEND trainee this year and her group project has focused on the improvement of transition planning for adolescents and young adults with Autism Spectrum Disorders... Read More


photo of Marisa Toomey, MD

The Children's Hospital of Philadelphia: "Preliminary Validation of the PROMIS® Pediatric Parent-Proxy Peer Relationships Measure in Children with Autism Spectrum Disorder: A Developmental Behavioral Pediatrics Research Network Study" One of the core features of Autism Spectrum Disorder (ASD) is impairment in social interactions, which often creates difficulties... Read More


photo of Thusa Sabapathy, MD

Children's Hospital Los Angeles: Thusa Sabapathy, MD is a second year MCHB Developmental-Behavioral Pediatric (DBP) fellow at Children’s Hospital Los Angeles who is studying the use of strength based approaches with families of children with autism spectrum disorders (ASD). She also completed the CA-LEND long term training last year. As more and more families are presenting... Read More


photo of Boston DBP Fellows

Boston Children’s Hospital: It is well-documented that children with Autism Spectrum Disorder (ASD) require increased health care services even when compared to other children with Special Health Care Needs. However they often have difficulty accessing appropriate care. At Boston Children’s Hospital (BCH), anecdotes of delayed or missed care are common for patients with ASD... Read More


photo of Dr. Ayesha Cheema-HasanRhode Island Hospital: "Evaluation of PROMIS Self Report for Peer Relationship and Psychological Distress in Teens with High Functioning Autism Spectrum Disorders"
Autism Spectrum Disorder (ASD) affects as many as 1 in 68 children. Despite the fact that ASD is this common, there are no widely accepted way to measure the outcome... Read More


photo of Morgan WhiteUniversity of California, Davis "Sex Differences in Maternal Auto-antibody Related (MAR) Autism"
The Autism Spectrum is a heterogeneous group of disorders encompassing a wide range of atypical behaviors. Distinct clinical patterns of behavior and co-morbidity may allow for some differentiation of disease within this spec... Read More


EVENTS:

Autism Awareness Month Webinar-SPHARC Webinar
April 28th, 1-2PM ET
As part of its Autism Awareness Month activities, the State Public Health Autism Resource Center (SPHARC) will host a webinar that highlights programs to improve ASD/DD screening, early identification and evaluation services.

Autism and Children's Mental Health
Mon, Apr 27, 2015
2:00 PM - 3:00 PM EDT

The Autism SIG will host a webinar which focuses on autism and co-morbid mental health conditions in children. We will focus on the challenges families face in accessing comprehensive services, as well as community and school based interventions.

Act Early Forum Webinar: Text4Baby Mobile Information Service and Act Early Collaboration Opportunities Exit Disclaimer
Thursday, April 16, 2015 2:00pm ET - 3:00pm ET
Learn about the Text4baby service and how the program provides information on important developmental milestones for babies and the importance of screenings. Information will be presented on Text4Baby collaboration opportunities for the Learn the Signs. Act Early. (LTSAE) Ambassador and State Act Early Teams programs. Attendees will also become familiar with the research on the effectiveness of text messaging in reaching underserved populations, young moms, and how Text4baby is making women feel more prepared for motherhood because they are armed with the knowledge that leads to better health for them and their babies.

Act Early Network Virtual Networking Event Exit Disclaimer
Thursday, April 23, 2015
3:00 p.m. - 4:00 p.m. ET
Celebrate Autism Awareness Month with the Act Early Network and attend the Act Early Network Virtual Networking Event on Thursday, April 23, 3pm-4pm ET. By attending, you will gain knowledge on effective program methods and strategies that have improved the early identification of autism and other developmental disabilities. The virtual networking event will bring together public health, health care, developmental disability, and additional professionals from the Act Early Network and Friends of NCBDDD coalition to share and discuss developmental screening, monitoring, and early detection practices through interactive posters and presentations. There will be six brief presentations with discussion opportunities in between, so attendees are able to virtually meet new professionals in the field.

Registration Now Open!  2015 Autism CARES Grantee Meeting: Implementing Evidence-Based Practices in Real World Settings Exit Disclaimer
This bi-annual meeting is an opportunity for MCHB-funded Autism CARES legislation grantees representing research, training, and state implementation stakeholders to share information about activities within their respective networks, discuss emerging trends, and facilitate meaningful collaboration. This meeting is hosted by ITAC, in collaboration with SPHARC and HRSA-MCHB.
Thursday, July 16, 2015- Friday, July 17, 2015
Location: Bethesda, MD

CDC Autism Awareness Month Activity
Date: April 16, 2015, 5:30pm – 8:00pm
Location: Tom Harkin Global Communications Center, Atlanta Georgia
Featuring: Jonathan Izak (Entrepreneur and founder of SpecialNeedsWare); The Sibling Perspective: A panel discussion on what it means to be a sibling in a family living with autism; Christopher Duffley (Singer and multi-instrumentalist)
For more information, : 404-498-2322

ARCHIVE NOW AVAILABLE!
2015 NIMH Autism Awareness Special Lecture

Original Date: April 6, 2015
Speaker: Dr. Thomas Insel

RESOURCES:

MN LEND Brief on ASD and Culture Released
Edited by A. Hewitt and K. Nye-Lengerman
A growing body of research in the United States identifies differences between children from diverse cultural, ethnic, and linguistic backgrounds who have neurodevelopmental disabilities. There are differences in estimated prevalence; access to early identification, assessment and diagnosis; as well as access to various forms of intervention and treatment. The latest edition in the bi-annual LEND Brief series provides information about how diverse communities view, understand, and experience Autism Spectrum Disorder (ASD) and other neurodevelopmental disabilities. It showcases projects and programs that recognize dimensions of culture, socioeconomics, and language through the services and supports they deliver to children with neurodevelopmental disabilities and families. Articles in this LEND Brief offer a range of topics and perspectives for families, service providers, educators, policymakers, researchers, and others. Published by the Minnesota LEND (Leadership Education in Neurodevelopmental and Related Disabilities) Program at the Institute.

New Resource: Is It Autism and If So, What Next? A Guide for Adults Exit Disclaimer
Autism Speaks has published Is It Autism and If So, What Next? A Guide for Adults. The guide is designed for adults recently diagnosed with or who suspect they may have an autism spectrum disorder. The guide provides an overview of autism and associated conditions, information about diagnosis and next steps in accessing services, and resources regarding employment, support, and advocacy.

Interdisciplinary Technical Assistance Center (ITAC) on Autism and Developmental Disabilities at AUCD Exit Disclaimer
The purpose of the Interdisciplinary Technical Assistance Center (ITAC) on Autism and Developmental Disabilities at AUCD is to improve the health of infants, children, and adolescents who have, or are at risk for developing, ASDs and other developmental disabilities. The Center accomplishes this by providing technical assistance to interdisciplinary training programs (i.e., the LENDs and Developmental-Behavioral Pediatrics (DBP) programs) to better train professionals to utilize valid and reliable screening tools to diagnose or rule out and provide evidence-based interventions for children with ASD and other developmental disabilities.

IN THE NEWS:

JAMA: Autism Occurrence by MMR Vaccine Status Among US Children With Older Siblings With and Without Autism Exit Disclaimer

Dr. Insel Reflects on Autism Awareness Month
In recognition of this year’s Autism Awareness Month, Dr. Insel, who serves as Chairman of the Interagency Autism Coordinating Committee (IACC), wrote his inaugural IACC Chairman’s blog post . Dr. Insel describes advancements in research and large-scale collaborative efforts related to autism spectrum disorder (ASD), including: plans for the newly reauthorized IACC; public-private partnerships to centralize efforts for biobanking tissue for ASD research, identifying biomarkers and risk factors, and data sharing; promising results from clinical studies investigating genetic risk factors and new therapeutic approaches.

From the White House: Presidential Proclamation -- World Autism Awareness Day, 2015
On World Autism Awareness Day, our Nation recognizes all those around the globe who live on the autism spectrum. We celebrate the countless ways they strengthen our communities and enrich our world -- and we reaffirm their fundamental rights to participate fully in society, live with respect, and achieve their greatest potential.

First Connections: Training and Technical Assistance to Support Community Agencies in Underserved Communities to Conduct Developmental Screening and Linkage for Young Children (CA UCEDD/LEND) Exit Disclaimer
The University of Southern California UCEDD was awarded a Training and Technical Assistance 3 year grant, funded by First 5 Los Angeles, to work with six community based agencies to develop replicable and sustainable models for standardizing screening for autism and other developmental disabilities for young children in underserved communities, linking families with early intervention services, and educating parents about developmental milestones and the early intervention service system.

Microsoft set to hire people with autism Exit Disclaimer
Microsoft has announced plans to hire people with autism. Working with specialist employment agency Specialisterne, which trains and finds positions for people diagnosed on the autism spectrum, the pilot program begins in May with 10 full-time positions in the company's Redmond, Wash., corporate headquarters.

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