Saturday, December 31, 2016

A pause to reflect, look ahead

As we take a moment to reflect on 2016, we have a lot to be proud of and grateful for!

Thanks to the generous support of families who participate in CAR studies or contribute to our Center's work through financial donations, CAR has continued to meet the needs of families in numerous ways over the past year. 

Among our most exciting advances in 2016 are several large-scale studies that will broaden our understanding of the great variability of ASD from one person to the next, and pave the way for more personalized treatment strategies. Here are some highlights from the past year:

  • In 2016, CAR ran 23 active studies serving all age ranges from infancy through adulthood.
  • Nearly 3,000 people participated in studies at CAR this year, many of whom received expert clinical guidance and  support.
  • CAR researchers published more than 75 peer-reviewed journal articles to guide new therapies, improve clinical care, and better meet the needs of individuals on the autism spectrum and their families.

2017 will bring some exciting new programs and advances at CAR! We look forward to having you as a partner as we move to our new home at CHOP’s state-of-the-art Roberts Center for Pediatric Care on Schuylkill Avenue in March,  and as we expand our research into more community-based settings, such as schools and camps.

We’re so grateful to you for being a part of our Center, and send our warmest wishes to you and your family for a happy, healthy, and fulfilling 2017. We look forward to seeing you in the new year!

Tuesday, October 4, 2016

CAR Researcher Dreams of a Better Night's Sleep for Children With Autism, Their Families

Children and adolescents need a healthy sleep pattern to fully develop and to perform their best during the day, but – as many reading this know all to well- sleep difficulties plague as many as  50%-80% of children with autism spectrum disorder (ASD)- and by default, their parents! And the consequences overflow to nearly every aspect of waking life.

Research has shown that children and adolescents with ASD who sleep poorly are more likely to engage in problematic daytime behaviors than children who get enough sleep, and that sleep disturbance is connected to anxiety, heightened sensory responses, aggression and poorer health outcomes in kids with ASD.

CAR researcher and developmental pediatrician Amanda Bennet, MD, MPH, empathized with the parents she’d see in her office, whose children’s sleep troubles were taking a difficult toll on the family over extended periods of time. With support from the Autism Speaks Autism Treatment Network, Dr. Bennett and her team set out to conduct the first large-scale study to look at the prevalence of sleep problems and patterns of sleep medication use in children with ASD patients and their families.

The team collected data from more than 1500 children and their parents, and it revealed a significant “disconnect” between parents and clinicians. Parents reported sleep problems in 71% of the children, but clinicians only diagnosed 30% of the children with a sleep disorder, indicating that parents’ concerns about sleep may not be reflected in the information gathered during a clinical visit.

Of the 30% of children who were diagnosed with a sleep disorder by a doctor, a little less than half (46%) were prescribed at least one medication to support better sleep; but these children who took sleep medications had more troublesome behaviors during the day and poorer quality of life overall.

Given this evidence that sleep concerns are both common and associated with problematic daytime symptoms, it is important that primary care providers be vigilant to sleep concerns voiced by parents,” the researchers wrote in the study.  However, there are barriers to this discussion on both sides of the exam table. Parents may think that sleep problems are “just a part of autism” or might be focused on other “daytime” behavioral concerns that could be the result of poor sleep. On the other side, health care providers may not have received training to implement behavioral sleep interventions for children with ASD, and given a lack of other options, turn to recommending medication when faced with parent’s concerns over a challenging sleep problem.

The causes of sleep difficulties in children with ASD are often complex. They may be related to health conditions like epilepsy or gastroesophageal reflux, which are fairly common in children with ASD; or it may be that challenges unique to autism, like difficulty with transitions or with understanding parent expectations regarding sleep, exacerbate problems with sleep hygiene or pediatric insomnia. Although some children require medications for treatment, a behavioral intervention might be more appropriate for others.   

While the study findings will come as no surprise to families living through this first-hand, Bennett and her colleagues see this study as a starting point for improving support for families and improving screening tools and training for clinicians.

In the meantime, some factors that have been shown to improve quality of sleep include calming bedtime routines and relaxing bedtime environments. Sleep medications can have their benefits, but establishing a nightly routine can ease the anxiety and stress of sleep disturbances. Parents learning sleep education can also help their child develop nighttime routines that ease the difficulties of sleep. Visit the CAR Autism Roadmap ™ for more information and tips on improving sleep for children with ASD.

Thursday, September 22, 2016

CHOP, Drexel Join National Consortium Studying Baby Teeth for Clues to Environmental, Chemical Risks Associated With Autism

CAR's Director, Bob Schultz, PhD, will be the
site leader for 10-site study that will
look at 
the baby teeth of children to learn
exposure to certain chemicals in

the womb is linked to a higher risk for
autism spectrum disorder (ASD)

Two Philadelphia research centers are among 10 centers studying baby teeth of high-risk children to learn about risk factors in the womb

CAR is among 10 research centers nationwide contributing to a study that will use new technology to explore what baby teeth can reveal about children’s exposure to chemicals in the womb, and whether prenatal exposures can contribute to a child’s risk of developing autism spectrum disorder (ASD)-- estimated to affect one in 68 children in the US.
In this national consortium, the researchers will examine the chemical composition of lost baby teeth from infants who go on to develop autism, looking for trace amounts of chemicals that could affect genetic and brain functioning. This study will be the first large-scale effort to determine whether prenatal exposure to specific chemicals plays a role in putting a child at risk for autism. The study will involve infants with older siblings who were diagnosed with ASD, because these “baby sibs” have a 20-fold greater risk of developing autism than children in the general population.
Researchers suspect that one way chemical exposures might affect brain development is by interfering with normal gene function, so examining the interaction among these three factors is extremely important, and has been a limitation of autism research until very recently.
“By joining our existing baby siblings research program with this national consortium, we will be able to establish the largest sample of high-risk children to ever be evaluated for environmental exposures and gene and environment interactions,” said Robert Schultz, PhD, the lead investigator for the CHOP site and director of CAR. The study will have a grand total of 1,713 baby sibling participants and will be led by Drexel University. “This is a monumental endeavor that would not be possible without pooling efforts and collaborating with colleagues across the nation, including colleagues at the A.J. Drexel Autism Institute, with whom we have worked closely since we founded CAR in 2008.”
Chemicals being examined in the study include organochlorine pesticides—like DDT—and polychlorinated biphenyls (PCBs)—formerly used as an insulator for electrical materials. Although banned in the 1970s, these chemicals remain in the environment and human exposure continues. The study will also consider phthalates, a chemical used to make plastics more flexible.
The consortium hopes the study’s findings will advance the understanding of the underlying mechanisms of autism, a crucial and notoriously complex question. Once these mechanisms are better understood, more targeted and effective prevention and treatment strategies can be developed.
“This study represents the best of cutting-edge research, as it focuses on the earliest stages of brain development, the interaction between different potential causes, and involves a large scale collaboration involving thousands of participants,” said Schultz. "This large sample size is critical for a deep understanding of autism, because it is inherently heterogeneous in its causes and clinical manifestations. In order to see patterns emerge, we need to be able to research a very large group of people. This kind of research is what will ultimately help us to discover autism’s causes and develop more effective treatment and prevention strategies.”
For at least the next two years, co-investigators at 10 institutions will be funded as a part of the Environmental Influences on Child Health Outcomes (ECHO) Initiative--a $157 million NIH program devoted to understanding how early exposure to environmental factors influences the health of children and adolescents.The collaborative team is composed of some of the world’s foremost autism experts across 10 institutions, with Drexel University as the lead Center:
• Manish Arora, PhD, Icahn School of Medicine at Mount Sinai
• Kelly Botterton, MD, Washington University in St. Louis
• Lisa Croen, PhD, Kaiser Permanente Division of Research
• Stephen Dager, MD, and Wendy Stone, PhD, University of Washington
• M. Danielle Fallin, PhD and Heather Volk, PhD, Johns Hopkins University
• Rebecca Landa, PhD, Kennedy Krieger Institute
• Daniel Messinger, PhD, University of Miami
• Craig Newschaffer, PhD, A.J. Drexel Autism Institute of Drexel University
• Joseph Piven, MD, and Heather Cody Hazlett, PhD, University of North Carolina at Chapel Hill
• Rebecca Schmidt, PhD, and Sally Ozonoff, PhD, University of California, Davis
• Robert Schultz, PhD, Children’s Hospital of Philadelphia and University of Pennsylvania
Learn more about this new study in the CHOP press release and the Drexel blog post.

Wednesday, August 3, 2016

For youth struggling with social skills, treating anxiety could be key

We all feel anxiety in certain social situations every now and then, but for those with autism spectrum disorder (ASD), social anxiety can be the spark that starts a wildfire.

Anxiety disorders frequently go hand-in-hand with ASD, particularly in adolescents- and the combination of the two disorders can be difficult to manage. As many as 40% of youth diagnosed with ASD also have a diagnosed anxiety disorder, which exacerbates the impaired social skills and feelings of loneliness contributed by ASD.  For example, an individual with an anxiety disorder can experience heightened arousal and fear of negative evaluation, which can lead to inaccurate processing of social interactions and social cues and avoidance of social interactions- which means fewer opportunities to practice social skills.  The takeaway: high levels of social anxiety may impede traditional treatments to improve social skills in children with ASD; so it is important for clinicians to be discerning and to consider treating anxiety separately when social skills treatments aren’t working on their own.

In a recent study, CAR researcher Brenna Maddox, PhD, demonstrated that cognitive behavioral therapy (CBT) that is modified to treat anxiety in children with ASD led to both reduced anxiety and improved social skills over the long term (one year after the treatment had ended). While previous studies had reported on the long-term outcome of anxiety disorder symptoms, no measures were taken for social skill improvement after CBT.

The findings in this new study also support previous findings which found significant posttreatment improvements for adolescents with ASD who participated in the Program for theEducation and Enrichment of Social Skills (PEERS), where parents assisted in the development of social skills by hosting group intervention classes.

Together, the studies contribute to the growing literature supporting CBT for youth with ASD and anxiety. The opportunity for adolescents to practice social skills with a therapist or in a group of other adolescents with ASD can reduce overall anxiety and social anxiety. When a child or adolescent with ASD is struggling with anxiety, it may feel like a hole they can never escape. Fortunately, CBT, backed by research and results, may be the light at the end of their tunnel.

Wednesday, July 27, 2016

Resources for Families and First Responders Following North Miami Shooting

At CAR, we have been following the news coverage of the disturbing incident late last week in North Miami in which a police officer shot the Charles Kinsey, the caregiver of a 26-year-old man with autism named Arnaldo Eliud Rios Soto . While the media coverage of the shooting has raised many concerns about police -community relations, most if it has missed the key point: unlike other recent police-involved shootings, this one was precipitated by an officer's misunderstanding of behaviors common in people with autism.

When Arnaldo, who had run away from the community home where he lived, did not respond to the officer's commands to lie on the ground, the officer mistook Arnaldo's toy truck for a gun, and shot, missing Arnaldo but hitting his caregiver, Charles Kinsey, in the leg. Kinsey is recovering, but Arnaldo was severely traumatized by the shooting and by being taken into police custody afterward..

It's clear that we have a long way to go to educate and prepare first responders- and our loved ones with ASD- about what to expect during an encounter. Training and practice is required on both sides in order to avoid the physical and traumatic harm that resulted from the recent encounter in North Miami. 

We are pleased that Pennsylvania enacted a law in 2015 requiring officers to receive training on best practices for situations involving people with autism, intellectual and developmental disabilities, or mental illness.

Here are some resources we are recommending for families and for law enforcement:

       Policy Support: 

    • Read the Autism Self-Advocacy Network’s Statement, which supports House Bill 2302, which would reduce funding for law enforcement departments that do not provide specialized training for first responders.

    For families:
o   BE SAFE The Movie uses video modeling to show viewers how to interact with the police in everyday encounters.

    For first-responders:

Sunday, May 1, 2016

Huddle Up 2016 Scores a Touchdown!

We were incredibly lucky to have one of the most beautiful days of the spring for the 6th annual Huddle Up for Autism at Lincoln Financial Field on April 17th!

Each year since 2009, the Philadelphia Eagles have partnered with CHOP's Center for Autism Research (CAR) to transform the stadium and field into a carnival-like atmosphere designed specifically with the needs of individuals on the autism spectrum in mind. This year's "sold-out" event attracted more than 3,000 guests and was free of charge to families. Huddle Up is also a fundraiser, and raised more than $40,000 for CAR programs and research!

Families were invited to explore the stadium locker rooms, run drills with Temple and Eagles players, run onto the field through the Eagles “helmet tunnel", kick a field goal, and play a giant game of inflatable life-sized bowling on the field!  Inside, sensory stations, music therapy, and quiet rooms were available to families who needed a break from the action, and child specialists from CAR were on hand to lend assistance when needed. In addition to fun and games, the event provided an opportunity for families to learn about resources and research opportunities with CAR, and to speak with some of the nation's foremost autism specialists and researchers in an informal setting.

"It can be hard for people with autism to enjoy a regular game day at the stadium. The noise, crowds and excitement can be overwhelming. So We pull out all the stops at Huddle Up, so these fans have a chance to meet some of the Eagles players, cheerleaders and SWOOP, and to roam the stadium in a supportive environment," said Robert T. Schultz, PhD, CAR's director. "We’re grateful for the Eagles’ ongoing commitment to supporting CAR’s mission of finding the causes and treatments for autism spectrum disorders, educating families, and training professionals in the field.”
We would especially like to recognize and THANK our top three fundraisers:
  1. Help Rock Autism raised $3,000 and received four pre-game field passes and four tickets to a Philadelphia Eagles home game for the 2016-2017 season!

  2. Team Anthony raised $2,100 and received four VIP Passes to the Philadelphia Eagles Training Camp at the NovaCare Complex!

  3. Team Liam raised $1,621 and received an authentic autographed Connor Barwin Jersey!
We  look forward this event to every year, and we truly think this year was the best one yet! Thank you to our amazing volunteers and the incredible Eagles staff who go above and beyond to make this a such a great experience for everyone who attends! 
Check out this photo gallery for more of our favorite shots from the day.  We also encourage you to post any photos you'd like to share on CAR’s Facebook page!
If you haven't made a donation to CAR and would like to do so, you can visit Huddle Up for Autism's donation page here