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2017 Autism Awareness: Highlights From Around the Network

DMCHWD Grantee Spotlights

Children’s Hospital of Philadelphia (CHOP) LEND

Children’s Hospital of PhiladelphiaThis Autism Awareness Month the Children’s Hospital of Philadelphia (CHOP) LEND is celebrating the success of its advocacy efforts in New Jersey. Five years ago, the fellows and faculty took on an important advocacy project to help families in New Jersey with Autism transition services. It started from a community project one of the LEND faculty members proposed. Living in New Jersey with a child with Autism who was getting older, she was hearing from other parents in the community that the transition services in New Jersey were scarce. That year, the CHOP LEND faculty decided they were going to help in this advocacy effort and offered a community project that would energize and train this parent community. Three fellows in the cohort helped organize community meetings to train the families to advocate and work with other community groups to bring Autism Spectrum Disorder (ASD) transition to the attention of local lawmakers.

Assemblywoman Pam Lampitt and Assemblyman Louis Greenwald representing Camden County heard this community and wanted to champion this effort. They brought together a group of community stakeholders, including families who were trained through the LEND project. In addition, after attending the Disability Policy Seminar and learning how to advocate with lawmakers, Jonathan Kratchman, the LEND faculty member’s son, decided he was interested in politics and was able to secure a supported internship with Assemblywoman Lampitt and Assemblyman Greenwald’s office where he became familiar with the work they did, and their staff got to see first-hand the benefits of utilizing job coaches for people with ASD. Jonathan also brought to their attention the fact that some New Jersey colleges and universities have Autism Support Programs but there were very limited funds to support them.

After hearing from Jonathan and others in their constituent community, the lawmakers convened a roundtable of post-secondary programs in New Jersey to hear about the barriers they were facing and what supports they would need to help more New Jersey residents with ASD who were aging out of the school system. Last year, they introduced Bill A3432 to the State Assembly and S1825 to the State Senate to create a taskforce, which would identify barriers young adults with ASD have in New Jersey in accessing transportation, post-secondary programs, vocational opportunities and other needs within the transition age Autism community. Just last month the bill unanimously passed the State Assembly and Senate and is on its way to the Governor to be signed.

LEND teaches fellows a very important fact that they carry with them throughout their practice, which is “nothing about us without us.” This message was sent to Assemblyman Greenwald and Assemblywoman Lampitt as they were writing the Bill. As a result, there will be an appointed position on the task force for a young adult with Autism Spectrum Disorder, clearly demonstrating that this is an important and necessary voice to have at the table.


Kennedy Krieger LENDKennedy Krieger Institute

The Kennedy Krieger LEND sponsored a continuing education course on Autism, March 20-22, 2017. This interdisciplinary course was planned by representatives from 4 LEND programs and was attended by approximately 300 professionals. Speakers addressed issues in identification, diagnosis, and management and represented the disciplines of education, epidemiology, genetics, neurology, pediatrics, psychiatry, psychology, and speech and language. Some of the talks presented included, “The Case for Universal Targeted Screening for Autism” by Daniel Coury, MD, “Early Identification, How Early is Early?”, “Children who ‘Outgrew’ their Autism, Successful Intervention, Maturation or Misdiagnosis?” by Catherine Lord, PhD, “Food Selectivity, Restrictive Diets, and Supplements” by Eric Levey,MD , “Sleep Disorders: Interdisciplinary Management ” by Jennifer Accardo, MD, “Treatment Approaches for Preschoolers with ASD” by Samuel Odom, PhD ,”Meeting the Challenges of Middle School” by Jill Locke, PhD, CCC-SLP, “Transitional Issues, A Practical Approach” by Deepa Menon, MD.

In Trainees' Words

Georgia LEND

Marvin So, MPH (Public Health)

Five years ago, I was a health navigator in San Francisco’s emergency shelter system. I was fresh out of college, bright-eyed and eager to help families find some semblance of stability during a frequently harrowing period of their lives. But, I soon realized how little good intentions meant when systems of care could not meaningfully communicate or collaborate to meet the medical, socioemotional, and basic needs of developing children and families. I was trained to help families optimally reach available services, but I began to wonder: how can we structure available services to optimally reach families?

These days, I listen to families more often through data than casework, trying to answer this enormous question. The work is just as precious, and I take particular pride in being able to shepherd facets of people’s lived experience - from diagnosis codes to patient narratives - to shine a light on the needs of those at the margins. My time with LEND has allowed me to share tables and conversation with those who might use this light in their clinical decisions, their parenting, and their advocacy, which is a gift. And most importantly, I’ve been able to see with clarity how we can ensure those with lived experience are represented in these conversations, and support them in illuminating the issues that carry meaning to them.

Five years from today, I don’t know where I’ll be. Heck, even the next five months is questionable! But I hope to continue advancing these conversations where they may be lacking, keeping the voices of the families we serve always in the back pocket.


Kurt Vogel (Individual Advocacy)

I have appreciated that people in GaLEND want to get to know me for who I am. I have seen that people with disabilities can be leaders and that there are many opportunities. My experiences in GaLEND and in the Georgia Tech Excel program have really opened my eyes to the possibilities that exist for me. I am open to the connections that I will make through the GaLEND Program that I may not even be aware of yet.


Claire Dees (Family Advocate)

I see the GaLEND experience as an opportunity to improve lives in a community in which all might live, work, worship and play together. My passion for helping families impacted by disability is fueled even more by this rich interdisciplinary experience. It is stretching me at a time when most beneficial to my work as the Executive Director for Spectrum Autism Support Group (www.atl-spectrum.com) This quote says it all! "I want to make a difference doing something that makes a difference, with people that make a difference, at a time that makes a difference." --John C. Maxwell


Jorge Verlenden, PhD (Psychology)

What have I learned in these two short months at GaLEND? So much. Most fundamentally though, I have learned that it is time for a shift in the way we think about individuals with disability. It’s time to move beyond our focus on intervention and a few basic school supports. It is time to focus on equity. What does that look like? From the stories that individuals at GaLEND have shared thus far, it encompasses full inclusion into our communities -- our school settings, (child care, preschool, K-12 and universities as well), our neighborhoods, our work places, and our arts. And that means provision of the resources that will enable this inclusion, so all individuals, regardless of disability status, can have the opportunity to pursue their dreams and aspirations, to pursue love, family, and friends. Going forward in my career, I plan to leverage my skills as a researcher and teacher to advocate for this advancement by listening closely to the lived experiences of individuals, by sharing those stories, and by working collectively to address needs so equity can one day be achieved.


Angela Miles, MS, CCC-SLP (Speech- Language Pathology)

In five years, I hope to be fully engaged in connecting people in collaboration and helping them share their resources to address regional and national issues of importance to children with special health care needs, children with autism and related disorders and their families.


Minnesota LEND

Jocelyn Bessette Gorlin: Research on Lived Experience of Families

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.

There is limited literature on the experiences of families when a child has severe autism as distinct from milder autism and that also includes the voices of multiple family members. She visited the homes of families to interview many family members who would share their story, including mothers, fathers, siblings, and grandparents. 

Family members were willing and eager to talk. Many said they hoped to break the cycle of isolation by sharing their story and hoped to additionally improve health care. Gorlin states that several families expressed joy that finally their story would be shared with the public when she let them know of the publication. She would like to thank the families who opened their homes and lives to her and to the LEND staff who also ultimately assisted the families in telling their important stories.  Her article can be located here. Exit Disclaimer


Jack Reagan

John “Jack” Reagan, current 2016-17 MNLEND Fellow, recently co-published a brief based at UIC, based on the FINDS 2010 data surveying family caregivers. The data he analyzed within the FINDS survey focused on the emotional and physical markers affecting family caregivers.  These markers have both positive and negative associations to their related outcomes for family caregivers. He helped assess how caregivers reported their respective health status based on these positive or negative markers. Within the caregiver group, he focused on sibling caregivers for this brief. He looked at how the reported disability group effects reported health status, stress levels, demographics, and living arrangement.

Overall, the families that completed this survey indicated that they experience a large amount of total stress, both physical and emotional. The most influential factors on the reported health status for family members were guilt, loneliness, physical fatigue, and costs of caregiving. Stress is only one indicator of the many markers that make up the negative effects of caregiving. In the future, it will be important to recognize the difficulties of caregiving in order to provide better family support. This report illustrates the need for improved services for families and it will be critical that we begin to provide basic mental health options for families to access. Click to view the UIC Fall 2016 brief. Exit Disclaimer


Utah Regional LEND

Meet Lisa Latten

Lisa is a current UR LEND trainee, a family advocate, and the mother of a son with autism spectrum disorder. She is employed by AutismUp as a Family Navigator and currently works full-time in Developmental and Behavioral Pediatrics Exit Disclaimer at the University of Rochester. Her time is devoted exclusively to working with families of children with autism and other developmental disabilities. She knows all too well the fear and shock that is associated with an autism diagnosis. This month, Developmental and Behavioral Pediatrics services will move into a new space Exit Disclaimer designed specifically for children with autism and other developmental disabilities. Lisa will be found in the Family Library in our new space, where she will be able to provide support and guidance.

“You hear autism and that’s all you can think about. But I want to [. . .] tell [people] that it’s not terrible. It’s not awful. It doesn’t mean your child won’t be happy or won’t have a place in the world. That feeling that you’re all by yourself – it’s not true. It’s just that your reality will be a little bit different now.”

Learn more about UR LEND Exit Disclaimer


Arizona LEND

As part of their Arizona LEND leadership project, Page Buekelman, Whitney Mast, Joelle Fang, and LeAnna Lucero have been actively involved in helping the board members of the Autism Society of Southern Arizona organize the 11th annual Autism Walk in Tucson, AZ. The walk, which takes place on April 1, 2017, is the largest event for Autism in Southern Arizona, with an expected turn out of over 2,000 participants. There are also more than 50 community resources represented at the walk, providing valuable information for families of children with Autism, and many fun events for children of all ages to partake in. Each trainee has been working with a different board member throughout the planning process to organize different aspects of the event, including site coordination, volunteer organization, and entertainment. Trainees have attended bi-weekly planning meetings to consistently assess progress and determine future needs. Tasks have included but are not limited to: contacting local vendors for quotes and sponsorship, recruiting volunteers from various organizations, organizing registration set-up, compiling sponsor bags, promoting the walk via social media and flyers, and helping with informational booths at community events. Arizona LEND trainees have been encouraged to give their own input on new ideas throughout the planning process and have been actively engaged in all email communications with other board members.


UC Davis LEND and DBP

LEND Me Your Ears… by Morgan White, MD

photo of Morgan WhiteAs the tenth year of my post-undergraduate training draws to a close, I am able to reflect admirably on my past experiences.  After attending medical school at the University of Oklahoma, residency whisked me and my fiancé away to St. Louis University.  Three short years later, my now husband, a human baby (in addition to our fury ones) and I were westward bound for fellowship. 

Arriving to the University of California at Davis was like a dream come true.  All these long years working toward becoming a Developmental Behavioral Pediatrician (DBP) had finally culminated.  I could start focusing on what I am most passionate about, helping children and families with neurodevelopmental disabilities. 

As I became embedded into the inner workings of the MIND Institute, I learned about the hard-earned federal grant funding that makes it all possible.  My fellowship program is funded by the Maternal Child Health Bureau (MCHB).  The UC Davis MIND Institute is both a University Center for Excellence in Developmental Disabilities (UCEDD) and an Intellectual and Developmental Disabilities Research Center (IDDRC). 

When we learned that the MIND Institute would also become a training site for Leadership Education in Neurodevelopmental Disabilities (LEND) in 2016, it was the icing on the proverbial cake.  We had reached the quadfecta (yes, this is a word) which very few other institutions have been able to achieve. 

I am exceedingly grateful for these programs, which sponsored, supported, and enriched my fellowship training.  The combination of education and training in research, clinical skills, community outreach, and advocacy has enabled me to be well prepared for anything the future may hold.  

With so many conflicting feelings, I face what comes ahead with my head held high and my family by my side.  Confident, yet humble.  Elated, yet anxious.  Bittersweet.    


"Time With TAG"

Holly Hodges

photo of Holly HodgesOne's life journey is largely shaped by one’s life experiences, and for me, my passions and career interests are in the broader context of life with a younger sibling with autism spectrum disorder. Seeing him struggle with some aspects of functioning while uniquely excelling in other areas has taught me that in the setting of uncertainty, setbacks, or perceived weakness, one can always find hope, potential, a change worth making or a goal worth pursuing. Experiencing this journey with him and my family fuels my desire to pursue better understanding of neurodevelopmental disorders, to seek effective treatments for these disorders, and to support patients and families in the process of living with their diagnoses.

Growing up I loved mysteries – taking the clues and trying to bring them together to solve a puzzle – so the study of medicine was an obvious fit. My love of investigation coupled with a passion for serving children and families led to a career in Pediatrics and ultimately to my current MCHB training program which is a fellowship in Developmental and Behavioral Pediatrics at Boston Children’s Hospital. Within my MCHB funded training program, I have the opportunity to gain expertise in clinical diagnosis and management of developmental disorders while also formulating and investigating a research question relevant to the field. I am currently working to describe and characterize toddlers diagnosed with autism via the DSM-5 criteria and ultimately hope to follow these patients through school entry to determine their ability to access services and their functional outcomes.

I recently had the privilege of connecting with many other MCH trainees and former trainees at the 2017 Making Lifelong Connections Meeting. This experience afforded the opportunity for meaningful networking and exchange of ideas, and I left the conference excited about the connections I made and eager to further develop my ideas. In my experience as a Maternal Child Health Trainee thus far, I have been continually impressed and encouraged by the creativity and commitment I have witnessed in my interactions with other trainees. Among these peers, I sense a mutual drive to understand what we do not know or to take what we have learned and turn it into meaningful change, all with the common goal of bettering the health of children, mothers, and families. There are so many ways to serve and so many different career pathways that can lead to the successful promotion of the health of this population. The fact that the Maternal Child Health Bureau Training Programs bring together such a diverse group – both in life experiences and in educational background – united behind a common goal is a unique and valuable strength. I feel so honored to be a part of this team.

 

EVENTS:

Meet the Doctors

Date: April 1, 2017 10 am – 1pm

Location: Hilton Garden Inn 220 India St. Providence RI

Description: Meet and speak with some of the leading minds in Autism Treatment Research. This is a drop-in style event where families and individuals can meet area clinicians and researchers, members of the Rhode Island Consortium for Autism Research and Treatment (RI-CART), and staff of The Autism Project. Clinicians, researchers, and staff are available to speak with attendees individually as they learn more about appropriate community resources, as well as explore how physicians, service providers, educators, individuals with ASD and their families can collaborate in a broad range of research projects in the RI area. This event is co-sponsored by RI-CART and The Autism Project.


Revelfest Exit Disclaimer

Date: April 1, 2017 7pm-10pm

Location: Revel Factory 249 Roosevelt Avenue, Pawtucket, RI Event

Description: Multi-Media Arts Festival in support of The Autism Project's Camp WannaGoAgain.


WAAALK For Autism

Date: Sunday, April 2nd, 10 am - 2 pm

Location: Marina Park, Kirkland

Description: A fun-filled inclusive day with activities for all families and resources for families impacted by autism and developmental disabilities. Includes a 3K walk along the Kirkland waterfront.


Team Bailey Comedy Fundraiser in Support of Imagine Walk

Date/Time: April 1, 2017 7pm – 10pm (doors open at 7 pm, show starts at 8 pm)

Location: Platforms 165 Poe St. Providence, RI Event

Description: Comedy Fundraiser featuring New England’s best Comedians; snacks provided, cash bar available, raffles and 50/50 drawing For more information please contact Toni Goff 401-263-7073 or Maria Aponte 401-749-0297, tickets are $25.00


Getting an Autism Spectrum Disorder Diagnosis: Where Do I Go From Here? Exit Disclaimer

Date: Monday, April 3, 2017, 9:30 – 11:30 AM ET

Location: Center for Autism and Related Disorders (CARD), Kennedy Krieger Institute, Baltimore, MD

Description: Cathy G. Groschan, LCSW-C is a clinical social worker at the Center for Autism and Related Disorders (CARD) at Kennedy Krieger Institute (KKI). She has worked at CARD since it began and started her social work at KKI in 1977. Cathy will present in-depth information about autism spectrum disorders (ASD) and discuss resources available in Maryland. Cathy is open to questions from the audience. After the presentation, she will provide handouts that offer guidance related to getting a diagnosis, finding services, the education system and more.


What is Transition Planning for a Teen with an ASD Diagnosis? Exit Disclaimer

Date: Monday, April 3, 2017, 1:00 – 3:00 PM ET

Location: Center for Autism and Related Disorders (CARD), Kennedy Krieger Institute, Baltimore, MD

Description: This presentation is for parents who have teens with ASD who are planning for a transition from school to college, employment, and/or community. Transition planning can be confusing and here is an opportunity to learn about the process. Resources will be shared.


Beyond the Classroom: Strategies for Businesses & Communities to Accommodate, Support, and Encourage Inclusion Webinar Exit Disclaimer

Date: Tuesday, April 4, 2017, 1:00 – 2:00 PM EDT

Description: Presenter: Claire Schutte, PsyD, BCBA-D


Toilet Training for Children with Autism: Strategies for Success Exit Disclaimer

Date: Wednesday, April 5, 2017, 11:30 AM – 12:30 PM ET

Location: Center for Autism and Related Disorders (CARD), Kennedy Krieger Institute, Baltimore, MD

Description: This presentation will provide user friendly strategies and practical tools for parents of children with developmental concerns to facilitate their children’s toilet training skills. Parents are encouraged to bring questions!


Let’s Talk about the Money: Planning for College Exit Disclaimer

Date: Thursday, April 6, 2017, 3:00 – 4:00 PM EDT

Description: These two financial advisors, pulling from personal and professional experience, will share their expertise about how to do that. There are many sources of money to pay for college that many people may not be aware of.


Deaf Children with Autism Spectrum Disorders Exit Disclaimer

Date: Wednesday, April 12, 2017, 11:30 AM – 12:30 PM ET

Location: Center for Autism and Related Disorders (CARD), Kennedy Krieger Institute, Baltimore, MD

Description: This presentation is designed to explain the characteristics of autism spectrum disorders in deaf children and help pinpoint the struggles deaf children with autism spectrum disorder most often experience. Everyday examples and tips for providing support and practice in specific skill areas will be discussed.


Research Updates: Immunological Issues In ASD – Gestational Influences, with Dr. Judy Van de Water Webinar Exit Disclaimer

Date: Wednesday, April 12, 2017, 1:00 – 2:00 PM EDT

Description:Join Judy Van de Water, PhD to learn about gestational influences on neurodevelopment.


Autism Awareness Day: Acceptance, Support, Empowerment Exit Disclaimer
Sponsored by CAAC

Date: April 12, 2017 10am – 12pm

Location: The Connecticut State Capitol 210 Capitol Avenue, Hartford, CT; Capitol Building Room 310

Description: 10am-11am breakfast and meet & greet 11am-12pm Program and press conference. Please contact your State Representative and State Senator and ask them to attend this important event.


3rd Annual Autism Awareness Contest Exit Disclaimer

Date: April 12, 2017

Location: Capitol in Hartford

Description: Please make arrangements to join us for breakfast and to celebrate the positives we have made in our state regarding services and programs.


#Jobs4ALL Twitter Chat: Autism in Academia Exit Disclaimer

Date: Tuesday, April 18, 2017, 2:00 – 3:00 PM ET

Description: Join a Twitter Chat on Autism in Academia with host @TimGordenJr and moderator @AUCDNews. Timotheus Gordon Jr. is a freelance writer and blogger specializing in autism acceptance, social commentary, sports, cosplay, and comic/anime conventions. He has been published in online publications such as Football.com, Creative Loafing Atlanta, and Yahoo Contributor Network. In addition, he takes event pictures at anime/comic conventions, rallies, college events, class reunions, 5K races, and church functions. Along with those two professions, he is currently an independent marketing representative, where they utilize social media and word-of-mouth to provide essential productions and show people how they can gain financial independence.


Special Needs Planning – Caring for All of Your Family Members Exit Disclaimer

Date: Wednesday, April 19, 2017, 11:30 AM – 12:30 PM ET

Location: Center for Autism and Related Disorders (CARD), Kennedy Krieger Institute, Baltimore, MD

Description: Understanding special needs planning. This presentation is designed to educate people on the planning process. Learn how to begin the development and integration of a traditional financial plan with special needs life plans. Participants will obtain tips to assist with special needs planning, develop a greater understanding of legal needs and issues and learn steps to preserve government benefits. Proper planning can provide caregivers peace of mind in knowing loved ones will be cared for as they grow into adulthood.


Latino Public Radio of Rhode Island (LPRRI)

Date: April 19, 2017 9am to 10am

Location: 1290 AM (radio station)

Description: Our bilingual Family Support Specialist and our Family Support Specialist manager will join Dr. Pablo Rodriguez for a one hour show about ASD and related developmental disabilities from the perspective of a parent/family navigator. The show will focus on what Autism Spectrum Disorder means, sharing concerns that a family might have about their child’s development, and how to take the first step in accessing screening and resources in our communities. Latino Public Radio (LPR) is a 501(c)(3) not-for-profit organization, whose mission is to inform, educate and entertain the bilingual radio audience through the production and distribution of intelligent, high quality, cultural and educational programming that reflects the diversity of the Latino community.


Telehealth and Autism Coffee Talk Exit Disclaimer

Date: April 19, 2017 2pm – 3 pm

Location: Webinar

Description: Please join AMCHP State Public Health Autism Resource Center (SPHARC) for an exciting Coffee Talk with Mei Kwong, Policy Advisor and Project Director for the Center for Connected Health Policy, to learn more about telehealth and autism across state levels!


Social Communication Challenges in School-Aged Children with ASD: What Do They Look Like and How Can We Help? Exit Disclaimer

Date: Thursday, April 20, 2017, 10:30 – 11:30 AM ET

Location: Center for Autism and Related Disorders (CARD), Kennedy Krieger Institute, Baltimore, MD

Description: School-aged children with Autism Spectrum Disorders (ASD) often have difficulty with initiating and maintaining conversations and considering the perspectives of communication partners. In this presentation, Dr. Greenslade will explore some of these challenges and provide treatment strategies to improve social communication in everyday interactions.


CDC’s Autism Awareness Month Event 2017 Exit Disclaimer

Date: Thursday, April 20, 2017, 6:00 – 8:00 PM EDT

Location: CDC Global Communications Center, Aud. B 1600 Clifton Rd. NE Atlanta, GA 30329

Description: Keynote speaker: Daniel Share-Strom, Public speaker, Asperger educator, and advocate will share his perspective on increasing awareness and his experience living with autism and transitioning as an adult.   Panel discussion: Young autistic adults will share their experience transitioning into adulthood.  Autism through the Arts segment:  The Hope Squad from Jacob’s Ladder will perform theater improvisation under the direction of Andy Jones.


#Jobs4ALL Twitter Chat: Autism and Industry Exit Disclaimer

Date: Monday, April 24, 2017, 2:00 – 3:00 PM ET

Description: Join a Twitter Chat on Autism and Industry with host @VRFerose and moderator @AUCDNews. V. R. Ferose is the Senior Vice President, Head of Globalization Services, SAP SE. Based in Palo Alto, CA, Ferose is responsible for the adoption of SAP products worldwide through the delivery of solutions targeted at individual local markets. By providing functional localization, translation, product compliance, and product support across several countries, Ferose's team enables SAP's global footprint. Ferose founded SAP's Autism at Work (online) initiative Exit Disclaimer after the diagnosis of his son. This groundbreaking program integrates people with autism into the workforce, and currently includes over 100 colleagues in Australia, Brazil, Canada, the Czech Republic, Germany, India, Ireland, South Korea, and the United States.


As One: The Autism Project Exit Disclaimer

Date: Tuesday, April 25, 2017, 6:00 - 8:15 PM ET

Location: Lipsett Amphitheater, Building 10 (Clinical Center), NIH Main Campus, Bethesda, MD

Description: The National Institute of Mental Health and Office of Autism Research Coordination are pleased to invite you to attend our annual special event to recognize National Autism Awareness Month. We will be hosting a screening of the documentary film As One: The Autism Project, which was commissioned by Her Highness Sheikha Shamsa bint Mohamed bin Zayed Al Nahyan of the United Arab Emirates (UAE) to raise awareness of autism spectrum disorder. The event will feature a screening of the film followed by a discussion with the film director, Ms. Hana Makki, and Ms. Sharifa Yateem, a behavioral therapist who worked with the children and families featured in the film.


Autism, Intellectual and Developmental Disabilities, and Law Enforcement Interactions Exit Disclaimer

Date: Wednesday, April 26, 2017, 11:30 AM – 12:30 PM ET

Location: Center for Autism and Related Disorders (CARD), Kennedy Krieger Institute, Baltimore, MD

Description: This presentation will provide an overview of the steps the Montgomery County Department of Police have taken to ensure positive, effective interactions between law enforcement and the Autism/Intellectual and Developmental Disability (IDD) communities. Attendees will be provided safety informational tools they can pass on to those they serve, and will leave with an increased understanding of the dynamics of Law Enforcement and the Autism/IDD communities.


15th Annual Imagine Walk & Family Fun Day for Autism 2017 Exit Disclaimer

Date: April 30, 2017 9am – 1pm

Location: Dusk Goddard Memorial State Park Warwick RI

Description: Registration at 9 a.m., walk begins at 10 a.m.; The Imagine Walk is followed by a Family Fun Day event that features an assortment of free activities designed for children and teens with autism and their families including: a reptile show, an obstacle course, bounce house, face painting, arts and crafts and NEW this year…a sensory tent! All funds raised by the walk will benefit The Autism Project.


Autism Conference and Exposition of Georgia Exit Disclaimer

Date: May 3-4

Location: Loudermilk Conference Center Event

Description: The Autism Conference & Exposition of Georgia, ‘Innovation to Action: Connecting the Pieces with Practical Strategies’, will specifically focus on the best thinking in the autism community, and will provide practical strategies relevant to individuals living with autism and their family members. The conference will offer educational and engaging forums for professionals, parents and self-advocates, and will feature dozens of sessions, posters, exhibitors and unlimited networking opportunities for all attendees. The Autism Conference & Expo of Georgia is guided by 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.


Public Meeting on Patient-Focused Drug Development for Autism Exit Disclaimer

Date: Thursday, May 4, 2017, 1:00 – 5:00 PM EDT

Location: Silver Spring, MD

Description: On May 4, 2017, FDA is conducting a public meeting on Patient-Focused Drug Development for Autism. FDA is interested in obtaining patient perspectives on the impact of autism on daily life and patient views on treatment approaches. Patient-Focused Drug Development is part of FDA’s performance commitments made as part of the fifth authorization of the Prescription Drug User Fee Act (PDUFA V). The public meeting is intended to allow FDA to obtain patient perspectives on the impact of autism on daily life, patient views on treatment approaches for autism.


11th Annual Autism Education Conference Exit Disclaimer

Date: May 5, 2017 9am – 3pm (Doors open at 8am for networking and light breakfast)

Location: Langley’s Restaurant 28 Lamphere Road, Waterford, CT 06385

Description: Regular rate to register is $75. Please register by 4/21/2017.


Supporting Sensory Needs in Children & Teens with ASD Webinar Exit Disclaimer

Date: Monday, May 8, 2017, 1:00 – 2:00 PM EDT

Description: Sensory issues are a complex and often overlooked issue for individuals on the autism spectrum. Join occupational therapist Lindsey Biel - co-author of the book Raising a Sensory Smart Child: The Definitive Handbook for Helping Your Child with Sensory Processing Issues, to learn tips for successfully supporting children and teens who struggle with sensory discomfort and pain.


The What, Why, and How of Becoming a Comprehensive Transition Program (CTP) Exit Disclaimer

Date: Wednesday, May 10, 2017, 3:00 – 4:00 PM EDT

Description: In this webinar, we explain what Comprehensive Transition Program, or CTP, is and why programs should consider applying for this approval. We also give practical advice on the application process and how to write a successful application to become a CTP.


International Meeting for Autism Research (IMFAR) 2017 Exit Disclaimer

Date: May 10-13, 2017

Location: San Francisco, CA

Description: The International Meeting for Autism Research (IMFAR) is an annual scientific meeting, convened each spring, to exchange and disseminate new scientific progress among ASD scientists and their trainees from around the world.


Research Update: GI Issues & ASD – Serotonin as a Potential Brain Gut Link Exit Disclaimer

Date: Wednesday, May 24, 2017, 1:00 – 2:00 PM EDT

Description: Kara Gross Margolis is a pediatric gastroenterologist whose clinical subspecialty is gastrointestinal problems in children with autism. She completed her fellowship in Pediatric Gastroenterology at Children’s Hospital of Boston, Harvard Medical School in 2007 and has been in practice at Columbia since that time. She has served on the Gastroenterology Committee of the autism treatment network for Autism Speaks and is part of a national research core at The Center For Discovery, a residential facility for children with special needs. She has conducted clinical research on the association between gastrointestinal problems and problem behaviors in children with autism. Her basic and translational research focuses on the relationship between intestinal serotonin, gut dysfunction and the potential role of serotonin as a gut-brain link in autism. She has been featured in The Atlantic Monthly and speaks regularly at both national and international conferences on these topics.

RESOURCES:

Is Your Autism Safety Plan Ready? Exit Disclaimer

In January 2015, 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. A Guide to Safety online Exit Disclaimer and A Guide to Safety hard copy Exit Disclaimer are available free of charge. Please limit your order to one copy per family. For questions or comments, contact program (at) researchautism.org.

IN THE NEWS:

Autism Science Foundation (ASF) Weekly Science Podcasts Exit Disclaimer

Weekly: The latest autism research news stories with ASF Chief Science Officer Alycia Halladay


Early brain development in infants at high risk for autism spectrum disorder Exit Disclaimer

Abstract (excerpt): In this prospective neuroimaging study of 106 infants at high familial risk of ASD and 42 low-risk infants, we show that hyperexpansion of the cortical surface area between 6 and 12 months of age precedes brain volume overgrowth observed between 12 and 24 months in 15 high-risk infants who were diagnosed with autism at 24 months. Brain volume overgrowth was linked to the emergence and severity of autistic social deficits. A deep-learning algorithm that primarily uses surface area information from magnetic resonance imaging of the brain of 6–12-month-old individuals predicted the diagnosis of autism in individual high-risk children at 24 months (with a positive predictive value of 81% and a sensitivity of 88%). These findings demonstrate that early brain changes occur during the period in which autistic behaviours are first emerging.


Autism Spectrum Disorder Screening Instruments for Very Young Children Exit Disclaimer

Westchester Institute for Human Development LEND faculty Patricia Towle, PhD, Co-Director of Psychology Training, and Patricia Patrick, DrPH, Director of Research, recently published: "Autism Spectrum Disorder Screening Instruments for Very Young Children: A Systematic Review," in Autism Research and Treatment. 

Abstract:  Research on ASD in infancy has provided a rationale for developing screening instruments for children from the first year of life to age of 18 months. A comprehensive literature search identified candidate screening tools. Using methodological probe questions adapted from the Quality Assessment of Diagnostic Accuracy Studies (QUADAS), two Level 1 and three Level 2 screening instruments were reviewed in detail. Research evidence conclusions were that instrument development was in beginning phases, is not yet strong, and requires further development. Clinical recommendations were to continue vigilant developmental and autism surveillance from the first year on but to use the screening instruments per se only for high-risk children rather than for population screening, with considerations regarding feasibility for individual settings, informing caregivers about strengths and weaknesses of the tool, and monitoring new research.


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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