Wednesday, September 20, 2017

Notes from the Field- Treatment Options for Co-occurring Anxiety and Autism

Since there are very few studies on how to treat anxiety in patients with autism spectrum disorder (ASD), it can be challenging for families to find a clinical specialist. So, what should clinicians do to help children with a dual diagnosis?

Traditional treatments for anxiety include medication with selective serotonin reuptake inhibitors (SSRIs), cognitive behavioral therapy (CBT), or a combination of the two. When children have co-occurring ASD and anxiety, these traditional treatments often need to be modified. Researchers are working to establish evidence-based methods to treat anxiety in patients with ASD.

 Modifying CBT can help 
patients with anxiety and ASD. 

In the meantime, Dr. John Herrington, a researcher and psychologist at CAR who specializes in the intersection of ASD and anxiety, has found it effective to modify aspects of CBT to meet the unique needs of patients with a dual anxiety and ASD diagnosis. “Anecdotally, I find individuals with ASD make more progress toward managing anxiety symptoms when the focus of CBT treatment shifts more toward the behavior-change aspects, rather than the more abstract concepts involved with modifying cognition –- thought processes,” says Dr. Herrington. “Children with ASD and anxiety have a harder time expressing their emotions and perspective-taking- so for them, challenging and restructuring their thoughts can be challenging.” He suggests focusing on the targeting a specific behavior (for example, social interactions with peers), then using gradual exposure techniques to address the child’s anxiety. Dr. Herrington also cautions that the treatment timeframe may be lengthier than the traditional CBT since it may take a while to uncover the situations that trigger a child’s anxiety.

More research is needed to determine effectiveness of CBT for children with ASD and anxiety. While CBT is likely to be effective, the treatment approach will need to be modified to address the unique needs of children with ASD. For example, CBT often involves “homework” for the patient, usually with the support of family members. For children with autism, this is challenging for two reasons: (1) they typically have trouble with focused attention and (2) it may be unsustainable to add additional homework tasks for families already overburdened with behavioral and academic assignments that must be integrated into their daily routines.

Many children with ASD are treated with SSRIs to manage symptoms of anxiety. Here, too, more research is needed to determine how these medications affect the brain in children with ASD and how they may impact anxiety or other behaviors.

Untangling Anxiety and Autism

All children experience fears and worries at some point. Maybe it’s jitters brought on by the first few days of school or riding their bike again after a fall. However, if the child has autism spectrum disorder, they may be especially fearful of particular sights, sounds or places. Small changes in their routines can leave some children with ASD extremely distraught and can sometimes trigger challenging behaviors. Interacting with people can be so anxiety-provoking, they’re unable to make eye contact or communicate at all.  Many parents might start to wonder:  is there something going on with my child in addition to autism? CAR’s Dr. John Herrington has long been interested in the intersection between autism and anxiety. He and his colleagues recently published a set of studies that sheds some light how people with autism experience symptoms of anxiety.

Approximately 40% of children with ASD
receive a dual diagnosis of anxiety

What does the research say  regarding co-occuring anxiety and autism? 

Approximately 40% of children with autism spectrum disorder (ASD) receive a dual diagnosis of anxiety, but researchers have long puzzled over a central question: is anxiety is a condition that occurs in addition to autism, or is anxiety one symptom among the constellation of symptoms that contribute to ASD? On the surface, it may seem like splitting hairs. However, the answer has important implications for how we treat anxiety in people with autism.

To answer this question, scientists have looked to differences in the brain. Findings from neuroscience show that the amygdala, the region of the brain responsible for processing emotions, plays a role in both anxiety and autism. However, the amygdala’s role in both diagnoses has remained unclear until new research from a team at CHOP's Center for Autism Research uncovered variations in its shape and structure in children with and without anxiety, and with and without ASD.

Dr.  John Herrington
In separate studies published in Biological Psychiatry: Cognitive Neuroscience andNeuroimaging and in the Journal of Autism and Developmental Disorders, Dr. Herrington and colleagues found the amygdala to be smaller and more active in children who have ASD as well as an anxiety disorder. These findings suggest that symptoms of anxiety are not merely a facet of the core ASD symptoms, but suggest that anxiety can co-occur as a separate diagnosis in children with ASD. 

The differences seen in the amygdala also help to explain the tendency of children diagnosed with both anxiety and ASD to express different anxiety symptoms than children diagnosed with anxiety alone. “Anxiety disorders in children generally fall into four basic categories: generalized anxiety, phobias, separation anxiety, and social anxiety”, explained Dr. Herrington. “When a child with autism also has anxiety, we tend to see they are more likely to have specific and uncommon phobias, unusual general anxiety especially around changes in daily routines, and social anxiety when compared with their typically developing peers.”

From a clinical perspective, this research increases the probability that traditional anxiety treatments, such as cognitive behavioral therapy (CBT) or medications, will prove effective for children with ASD and anxiety. However, these treatments will need modification to address the differences in symptomology seen in children with ASD. 

Related posts:
Notes from the Field- Treatment Options for Co-occurring Anxiety and Autism

 Social Anxiety or Just Disinterested? (And Why it Matters.)

Social Anxiety, or Just Disinterested? (And Why it Matters.)

Social interactions are a common cause of anxiety among individuals with autism. However, it can be extremely challenging for parents or clinicians to distinguish between social disinterest and social anxiety in someone diagnosed with ASD- and both are very common characteristics among individuals on the autism spectrum. Behaviorally, disinterest and anxiety can look the same in individuals with ASD: avoiding eye contact or retreating from social engagement are both perfectly reasonable responses in either case.

Social anxiety? Social disinterest? The
behaviors can look the same in ASD

So why does this distinction matter? Dr. John Herrington, a CAR researcher and psychologist specializing in anxiety and autism, explains, “While the behaviors of social disinterest and social anxiety are similar, the treatment plan will be very different”. For children disinterested in social stimulus, skill building exercises can help them learn how to engage in appropriate eye contact and social interactions. When a child avoids social stimulus because of anxiety, a modified version of cognitive behavioral therapy (CBT) can be effective

What does the future hold for research on anxiety in children with ASD? Dr. Herrington hopes new research will focus on amygdala studies, looking deeper into its shape and structure as well as its role in anxiety and social disconnection. Scientists should also emphasize treatment outcomes research to determine the impact of anxiety treatments on brain activity and behaviors. Dr. Herrington is currently running two studies related to this line of research: one tests whether a video game can help people acclimate to increasing eye contact and another that tests whether biofeedback techniques can help children recognize the physical signs of stress in their bodies.

For more on autism and anxiety, read Spectrum’s article covering Dr. Herrington’s research: Anxiety may alter processing of emotions in people with autism.

Saturday, September 16, 2017

Join CAR for the Eagles Autism Challenge!

Saturday, May 19, 2018

At a kick-off press conference on September 15th, the Philadelphia Eagles, Mayor Kenney, CHOP, Thomas Jefferson University and Drexel University gathered to announce the first annual Eagles Autism Challenge- a one day bike ride and family-friendly 5K run/walk on Saturday, May 19, 2018. Riders, runners and walkers will join Philadelphia Eagles players, alumni, coaches, executives, cheerleaders and SWOOP to raise funds for autism research and programs at three nationally recognized research institutions – Children’s Hospital of Philadelphia, Drexel University, and Thomas Jefferson University and Jefferson Health. These beneficiary institutions have formed a coalition of the top researchers and scientists in the field in hopes to help drive scientific breakthroughs that will have an impact for generations.

The event will begin with a Kick-off Party at Lincoln Financial Field on Friday evening, May 18th, 2018, and will culminate Saturday with a celebration on the field after crossing the finish line.

Ride: The Eagles Autism Challenge will feature cycling routes of 15, 30 and 50 miles that offer participants a chance to ride through the City of Philadelphia and its suburbs. All the rides begin and end at Lincoln Financial Field. Participants must be 13 or older for the 15 mile ride and 18 or older for the 30 and 50 mile rides.

5K Run/Walk: Runners and walkers will experience a family-friendly course that will begin at Lincoln Financial Field, take them through the surrounding neighborhood and return for the Finish Line Celebration. Children 12 and under may participate free of charge while under the supervision of a registered adult.

Virtual Participant: Not able to participate but still want to make a difference? Be a virtual participant and register as an individual or join a team. You’ll have your own fundraising account and personal fundraising page plus access to the Friday Night Kick-Off Party and the Finish Line Celebration.

A 501(c)(3) organization, Eagles Autism Challenge, Inc., will direct 100 percent of participant-raised funds to an autism research coalition formed by Children’s Hospital of Philadelphia, Drexel University and Thomas Jefferson University and Jefferson Health.  This coalition will bring fresh ways of thinking and additional resources to the field of autism research. What we learn here will be shared nationally and globally, so that everyone affected by autism can benefit from our collaborative efforts. 

“It is very difficult for a single institution to address the complex medical and scientific issues presented by the condition of autism,” said Chairman and CEO of the Philadelphia Eagles, Jeffrey Lurie. “So the partnership was organized to bring fresh ways of thinking and the necessary resources to the field.

“I have such great respect and admiration for the amazing work that Children’s Hospital of Philadelphia, Drexel and Thomas Jefferson are conducting today,” added Lurie.

Over the last 20 years, the diagnosis of Autism Spectrum Disorder has increased at a startling rate, yet it has historically been underfunded, misunderstood and under-researched. It is one of the fastest-growing developmental disorders in the country with one in 68 children affected and one in 42 boys. Symptoms of Autism Spectrum Disorder range from mild to severe and most individuals with autism experience verbal and non-verbal communication challenges, difficulties in the areas of social interaction and cognitive function, and a propensity to repeat behaviors.

“Teams at Children’s Hospital of Philadelphia care for thousands of children on the autism spectrum each year,” said Madeline Bell, CHOP’s President and CEO. “These patients and their families need answers, solutions and treatments that can only come from breakthroughs in research – and they are counting on us to make those breakthroughs. Fundraising events like the Eagles Autism Challenge give our teams the resources they need to make discoveries that will change our patients' lives today and help them thrive in adulthood.”

There are many ways to get involved, as a walker, rider, or supporter! Visit to see all the ways you can get involved.  By registering for the Eagles Autism Challenge, members will receive access to the Friday Kick-Off Party and Saturday’s Finish Line Celebration at Lincoln Financial Field, free food and beverage for both days, a cycling jersey or 5K T-shirt, honorary medal (riders and runners/walkers only) and more. Plus, Eagles experiences have been added as rewards for participants who hit milestone fundraising markers.

“Finding ways for people on the autism spectrum to pursue fulfilling lives is vitally important work to this community, and I’m deeply grateful that the Eagles Autism Challenge will help us continue our efforts,” said Drexel University President, John Fry.

For more information on the Eagles Autism Challenge, please visit  

Thursday, September 14, 2017

CAR's Dr. Susan Levy Honored with Prestigious Award during 2017 AAP Conference

The Children’s Hospital of Philadelphia’s Dr. Susan  E. Levy recognized for her contributions in the field of children with disabilities

Susan E. Levy, MD, MPH, director of the Regional Autism Center at Children’s Hospital of Philadelphia (CHOP) is this year’s recipient of the Arnold J. Capute Award, given by the American Academy of Pediatrics (AAP). The award was presented to her on September 16th at the AAP conference in Chicago.

Susan E. Levy, MD, MPH

The Arnold J. Capute Award is presented each year to an AAP member for outstanding contributions in the field of children with disabilities. The award is named after Arnold J. Capute, MD, FAAP who has been credited as one of the founding fathers in the field of developmental pediatrics and neurodevelopmental disabilities. Dr. Levy met Dr. Capute when she was a fellow at Kennedy Krieger Institute in 1982.

“I am truly honored to receive the Arnold J. Capute Award, particularly given the outstanding character and accomplishments of previous awardees,” says Dr. Levy.  “It has given me the opportunity to look back on my career to draw insight about the road I have traveled, and appreciate all who have contributed to the health and wellbeing of children with disabilities. 

Dr. Levy has practiced at CHOP for over 30 years, spending her entire professional and academic career in the Division of Developmental and Behavioral Pediatrics. In 1999, she launched the hospitals Regional Autism Center, which evaluates more than 300 new patients for autism spectrum disorder (ASD) every year. Dr. Levy is also a professor of Pediatrics at the Perelman School of Medicine at the University of Pennsylvania, and a member of several organizations focused on treating children with disabilities, including the Division of Developmental where she serves as Chair of the Quality and Patient Safety Committee, working closely with DBP fellows and other divisional staff on division based quality improvement activities to improve care and safety of children with developmental disabilities. Dr. Levy also works with The Center for Autism Research, the Center for Public Health Initiatives at UPENN, and the Institutional Review Board of CHOP. Her research includes early identification of children with ASD, epidemiology of ASD, clinical shared decision-making, and complementary and alternative medical treatments of ASD. She is also chair of the Autism Subcommittee for the Council on Children with Disabilities of the AAP.

“We are extremely proud Dr. Levy’s contributions to understanding the diagnosis, treatment, and epidemiology of autism spectrum disorders,” says Nathan Blum, MD, Chief of the Division of Developmental and Behavioral Pediatrics at CHOP. “Dr. Levy has spent her career focused on improving the health and well-being of children with disabilities. She is an international leader in autism clinical care and research and her work has improved the lives of countless children with autism and their families.”

Tuesday, September 5, 2017

Taking Flight for Autism Fundraiser Contributes $1.6 Million to Children’s Hospital of Philadelphia and the Center for Autism Research

Taking Flight For Autism 2017
The second annual Taking Flight for Autism event was held at Lincoln Financial Field Wednesday, August 30, 2017 and raised money for the autism support programs at Children’s Hospital of Philadelphia (CHOP) and the research programs at CHOP’s Center for Autism Research. Since 2016, the event has now raised $1.6 million for CHOP, announced Philadelphia Eagles Chairman/CEO Jeffrey Lurie and the Eagles Charitable Foundation (ECF) today.
Christina Weiss Lurie

At Taking Flight for Autism, more than 600 guests joined the entire Eagles organization – players, coaches and front office executives – for an intimate dining experience at Lincoln Financial Field. Attendees enjoyed a cocktail hour and dinner on the field, as well as a full program of football conversation and remarks from Lurie, head coach Doug Pederson and 2016 Eagles Hall of Fame inductee Merrill Reese. The evening’s guests purchased tables to support the cause. 

Eagles Quarterback, Carson Wentz,
with a guest
Autism Spectrum Disorder is a critical public health issue that is now being recognized as one of the fastest-growing developmental conditions in the United States,” said Jeffrey Lurie, Philadelphia Eagles Chairman and CEO. “Autism touches the lives of millions of people around the world, including within my family. Over the years, we have made great progress with advanced research and treatment options, but there is so much more we can learn. 

“I commend the Center for Autism Research at Children’s Hospital of Philadelphia for their progressive vision in this field and am confident that this financial support will contribute to their innovative work focused on autism research and programs.” 

Autism is a bio-neurological developmental disability that is typically recognized by the age of three. Individuals who have been touched by autism often experience verbal and non-verbal communication challenges, along with difficulties in the areas of social interaction and cognitive function. Autism is now being identified at a rate of one in 68 births – one in every 42 boys – making it the largest developmental disorder in the world. While there is no genetic test or cure for autism, its numbers continue to grow at an alarming rate. 

Eagles' Hall of Fame inductee, 
David Akers (L) with 
Jeffrey Lurie, Eagles Chairman 
and CEO (R)

CHOP’s Center for Autism Research is conducting research to discover the earliest “biomarkers” or biological signs of autism, as well as developing novel treatments and therapies, with the ultimate goal of improving the quality of life for people with autism not just in childhood, but over the course of a lifetime. 

“Our experts are committed to making breakthroughs in care and research that will transform the lives of children with autism,” said Madeline Bell, President and CEO of Children’s Hospital of Philadelphia. “This donation from the Eagles Charitable Foundation will make it possible for our doctors and scientists to find the answers that children and families need to thrive.”

In addition to 2017 Eagles Hall of Fame inductee David Akers, who attended the event and will be formally enshrined into the team’s Hall of Fame on October 23, a very special guest was also introduced – Anthony Starego. Starego is a Brick, NJ native who became the first varsity football player with autism in the United States to play in a high school state championship game and contribute points in the contest.  
Anthony Starego (L) with
 Eagles Place Kicker Caleb Sturgeis (R)

A placekicker like Akers, Starego is a 2015 graduate of Brick High School where he played football from 2009-13. Today, the 23-year-old Starego is the kicker for two minor league teams in the region, the Jersey Shore Hurricanes and the New Jersey Pitbulls. He was the leading kicker last year with the Pitbulls in extra points and set an NEAFL record seven extra points in one game.  

To download video footage and photos of last night’s event, please click here.

Tuesday, August 29, 2017

Lagging Skills May be Behind Challenging Behaviors in Children with Autism

CAR research suggests a promising framework for helping children with ASD overcome challenging behaviors

In school-aged children with autism, oppositional or aggressive behaviors- called “challenging behaviors” in the clinical literature- are among the most common difficulties reported by parents and teachers. Challenging behaviors can include hitting, teasing and other types of physical and verbal aggression as well as oppositionality, such as defiance, stubbornness, or argumentativeness. These behaviors can result in mounting levels of frustration and stress for family members, teachers, and classmates-as well as for the child him or herself.

A study recently published in the journal Autism by researchers from the Center for AutismResearch (CAR) at the Children’s Hospital of Philadelphia (CHOP) suggests challenging behaviors may arise when children lack certain skills required to cope with a problem or situation in an adaptive manner.

Brenna Maddox, PhD
“It is a common misconception that challenging behaviors are only seen in young children or children with cognitive impairments. In reality, many school-age children with autism, including children with average or higher cognitive abilities, struggle with challenging behaviors as well," said Brenna Maddox, PhD, the study’s lead author. “We wanted to understand if there were specific skills that were lagging in development, and contributing to challenging behaviors in children with autism.”

For their study, the research team looked at challenging behaviors using the Collaborative and Proactive Solutions (CPS) framework, developed by Dr. Ross Greene and formerly known as Collaborative Problem Solving. CPS is an evidence-based cognitive-behavioral treatment to reduce challenging behaviors in school-age children with oppositional defiant disorder and ADHD, but it has never been tested for effectiveness in children with autism. CPS is based on the premise that children display challenging behaviors when their skills do not match the demand of the situation or environment. In particular, children who react with challenging behaviors often have difficulty with situations requiring cognitive flexibility and adaptability, frustration tolerance, and problem solving. When these situations arise, a child quickly overwhelms their capacity to cope adaptively and therefore reacts with a challenging behavior.

Challenging behaviors may be a result
of mismatched coping skills and
environmental demands.
Using the CPS framework, CHOP researchers examined data from 182 parents of children with autism without intellectual disability. Parents completed several questionnaires evaluating their child’s challenging behaviors, executivefunction (time management, focusing attention, multitasking and behavior control), emotion regulation, language, and social skills. The study results showed that children with autism who had more impaired executive function and emotion regulation skills displayed higher levels of challenging behaviors. Specifically, children who experienced the greatest difficulty with emotion regulation, impulse control, and cognitive inflexibility were the most likely to show challenging behaviors.

This study is the first to use the CPS framework with children with autism, and while more rigorous studies are needed, researchers are hopeful the findings will shift the way people view and interact with children with autism displaying challenging behaviors.

“Instead of viewing a child’s challenging behavior as willful, we can focus on the incompatibility between environmental demands and the child’s lagging skills,” says Dr. Maddox, a postdoctoral fellow at the University of Pennsylvania and CAR. “For example, consider a child with executive function impairments who lacks the skills to independently complete his homework in a brief time period. When this child’s parent insists that he complete his homework before dinnertime, a mismatch between the child’s skills and environmental demands occurs, and might cause a “melt down” in which he screams at his parent and refuses to join his family for dinner.”

If borne out by further testing, these findings could help us understand the skills that a child needs to manage real world demands effectively. However, research is needed to understand how other people may set the stage for challenging behaviors by creating a situation where expectations are outpacing the child’s skills. While this research on how challenging behaviors occur is important, it is also important to recognize that CPS treatment may provide a new option for supporting individuals with autism and their families.

Benjamin Yerys, PhD
We plan to test an adaptation of the CPS treatment with children on the autism spectrum in a future study to learn whether it is clinically effective,” says Dr. Benjamin Yerys, the study’s co-author and CAR scientist. “In the meantime, we encourage family members and professionals who support individuals on the autism spectrum to consider potential mismatches between their skill set and what is being asked of them in a given situation and to engage children in coming up with a plan for how to adjust the demand and build skills in order to bridge that gap.”

The authors say that by viewing challenging behaviors through the lens of lagging skills, parents, teachers and caregivers can take steps to teach their child the necessary skills to cope with stressful situations in healthier ways. “An important component of this approach is that it gives agency to the person on the autism spectrum,” explains Dr. Maddox. “By helping them to communicate their needs and participate in the solution, they are gaining crucial skills for greater independence as they grow older.”

For more information and resources about autism, visit the CAR AutismRoadmap™, which includes several clinician-reviewed articles on challenging behaviors. For more information about the Collaborative and Proactive Solutions approach, visit