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Autism’s heterogeneity on display at INSAR 2019

INSAR 2019 logo

At the INSAR Annual Meeting, presentations from around the world share a common goal: finding better ways to support and care for people with autism.

There are countless aspects of autism spectrum disorder (ASD) to study, as evidenced by the 1,800-plus abstracts accepted at the 2019 International Society for Autism Research’s (INSAR) annual meeting. Presentations from investigators around the world ranged from pre-clinical studies of the genetic and biological underpinnings to community-based studies of diagnosis, assessment and treatment.

Along that broad spectrum of autism research, the work at Children’s National emphasizes better understanding of the clinical implications and community experiences of autism, with a particular focus on:

  • How well diagnostic and assessment tools capture the many differences between subpopulations of children with autism, whether based on sex/gender identity, cultural background or age
  • Understanding what children and adolescents with autism, and their parents, really need to help them thrive, and how to target supports to their unique needs
  • Finding the best ways to deliver vital information to autistic youth and their families in clear and accessible ways.

Researchers from Children’s Center for Autism Spectrum Disorders (CASD) presented nearly 20 scientific panels, oral presentations and posters at INSAR highlighting their most recent findings in these areas.

In addition to their own research, the CASD team attended sessions from INSAR’s global community of researchers, clinicians, and others with vested interest in the study of ASD. Lauren Kenworthy, Ph.D., CASD’s director, shared some of her key takeaways from the meeting with the ASD-focused publication Spectrum.

“At many levels of analyses, we are learning that a diagnostic label may not always be the best construct for identifying, treating or probing the biology underlying a person’s problems,” she said. “The keynote by Jason Lerch, professor at Oxford University, for example, was an elegant synthesis of imaging and genetic findings that made a strong case for the importance of exploring subtypes within autism and across developmental and psychiatric problems.”

“We also received another powerful reminder of our field’s complex heterogeneity,” Dr. Kenworthy noted. “Katherine Gotham, assistant professor at Vanderbilt University, was able to divide groups of autistic individuals in a study according to different criteria than the study’s initial design and effectively erase what appeared to be clear, statistically significant differences between typically developing and autistic participants. Her presentation demonstrated once more the importance of looking deeply at our data from many angles before drawing conclusions based on study outcomes.”

These studies, both at Children’s and elsewhere, all share one common theme: the importance of asking these questions and exploring the answers, with the goal of finding better ways to support and care for the millions of people around the world with autism and their families, no matter what autism looks like for them.

CASD presentations at INSAR 2019

Panel presentation: Clinical Presentation of ASD and Access to Care Among Girls

Allison Ratto, Ph.D., chaired a panel focused on the differences in performance on standard diagnostic tools based on the sex of autistic youth. The panel included presentations such as:

  • Sex Differences in Youth with ASD: Language Phenotype and Relation to Autism Behaviors from the ACE GENDAAR Network, presented by Sara Jane Webb of the University of Washington
  • Social Strengths of Autistic Girls: Sex Differences in Clinician-Rated and Parent-Reported Autistic Traits, presented by Dr. Ratto
  • Gender and Psychiatric Symptoms among Youth with ASD and ADHD, Alyssa Verbalis, Ph.D.
  • Evidence for Undertreatment of ADHD in Girls with ASD in the National Survey of Children’s Health, Kelly Register-Brown, M.D., MSc.

Oral and poster presentations

Oral session: Comparing Online and in-Person Parent Trainings to Support Executive Function and Self-Regulation: Feasibility, Acceptability, and Outcomes, presented by Lauren Kenworthy, Ph.D.

Poster sessions:

  • Executive Function and School-Based Interventions
    • Self-Report and Parent-Report Reveal Similar Patterns of Executive Function Problems in Autistic Adolescents, presented by Rachael Clinton and Charlotte Jeppsen
    • What Services Are Families of Children with Executive Function Challenges Getting? What Do Parents Say They Want?
    • A Mixed Methods Approach to Evaluation of Student Acceptability of the School-Based Interventions Unstuck and on Target and Parents and Teachers Supporting Students
    • A New Way to Help Parents? Exploring the Impact of School-Based Interventions on Parenting Outcomes
    • Executive Function and Academic Achievement in Autism Spectrum Disorder
    • Development of an Interactive, E-Learning Tool to Support Parent Implementation of an Executive Function Intervention
    • The Moderating Effects of Implementation Factors on Improvement in Classroom Behaviors in Unstuck and on Target and Contingency Behavior Management
  • Youth with ASD making the transition to adulthood
    • Preliminary Outcomes of a New Executive Function Treatment for Transition-Age Youth with ASD, presented by Cara Pugliese, Ph.D.
    • Self-determination in transition-aged individuals with autism spectrum disorder.
  • ASD population subgroups, including gender and ethnically diverse:
    • Parent-Teacher Discrepancy in Ratings of Executive Functioning in Black and White Children with ASD, presented by Serene Habayeb
    • Capturing the Autistic Experience: Self-Advocates Develop Self-Assessment Tools to Inform Autism Diagnosis and Validate Neuroimaging Findings across the Gender Spectrum
    • Comparing Parent-Report of Non-Intellectually Disabled Asian-American Youth with ASD and ADHD to Their White Peers
    • Autistic Traits in Transgender Youth: Dysphoria, Stigma, and Barriers to Care
    • Higher Rates of Gender Diversity in Children with ASD Based on Self-Report, Not Parent Report
Pediatric Neurology Update Attendees

Pediatric neurologists get a primer on the state of ASD research and care

Pediatric Neurology Update Attendees

Neurologists who attended the 2019 Pediatric Neurology Update received a broad look at autism spectrum disorders, ranging from biology to clinical care and advocacy.

Autism spectrum disorders (ASD) took center stage for the afternoon sessions of the annual Pediatric Neurology Update in April. The meeting, hosted by the Center for Neuroscience and Behavioral Medicine at Children’s National Health System, brings together 150-plus pediatric neurologists each year to discuss critical research and clinical care of pediatric neurological conditions.

Led by the Center for Autism Spectrum Disorders Director Lauren Kenworthy, Ph.D., the afternoon’s slate of presentations sought to give broad perspective of the current state of ASD research and treatment best practices.

“We know that the brain is different in autism, but many times we continue to define autism by behavioral traits,” Dr. Kenworthy told the crowd in her introduction. “Sitting between the brain and behavior often is cognition – how do you understand your world and interpret it?”

The afternoon’s presentations were organized to provide the audience with a clear picture of many facets of ASD research and treatment. Highlights included:

  • Joshua Corbin, Ph.D., director of the Center for Neuroscience Research, offered “New Insights into the Neurobiologic Underpinnings of Autism,” which mapped out some of the biological mechanisms of autism.
  • Adelaide Robb, M.D., and Dr. Kenworthy presented current clinical care outlines, with Dr. Robb focusing on pharmacological therapies and Dr. Kenworthy sharing successful strategies to improve executive functioning and day to day task management for school-aged children.

Attendees also received a taste of two current “hot topics” in autism research and care:

  • Kevin Pelphrey, Ph.D., presented recent findings on “Gender Differences in Autism Spectrum Disorders: Girls with Autism” calling attention to the fact that the current diagnostic standards may not capture some female-associated phenotypes of ASD.
  • Julia Bascom of the Autistic Self Advocacy Network brought the autistic person’s point of view to the table via her presentation: “Autism: Society and Government Challenges and Solutions,” which focused on her organization’s efforts to improve inclusivity in advocacy and research, which she sums up as, “Nothing about us without us.”

The session concluded with a real-world focused “Autism-Friendly Hospital Roundtable,” of six panelists from the clinical, advocacy, community and technology fields, who are all involved in hands-on practices to improve medical experiences for autistic children and adults.

  • CASD’s Yetta Myrick talked about her work to engage families of autistic children in discussions of research and clinical care programs, including the start of CASD’s first-ever Stakeholder Advisory Board.
  • Julia Bascom talked about some of the less-often discussed challenges for many autistic people who seek medical services.
  • Kathleen Atmore, Psy.D., and Eileen Walters, MSN, RN, CPN, provided an overview of Beyond the Spectrum, the clinical service at Children’s National that coaches providers and families in techniques to reduce the stress of routine medical visits for patients with autism and other developmental disabilities.
  • Amy Kratchman, director of the LEND Family Collaboration at Children’s Hospital of Philadelphia, talked about some of the autism-friendly strategies underway at her institution.
  • Michael O’Neil, JD, MBA, founder and CEO of the GetWell Network, Inc., previewed how GetWell and Children’s National are partnering on a new tool that harnesses app technology to bring better information to autistic children and their families after a new autism diagnosis.
  • Vijay Ravindran, CEO and co-founder at Floreo, demonstrated how it might be possible to reduce stress and create a calm peaceful autism-friendly environment even in the busiest of waiting rooms, by allowing the patient to escape via virtual reality.

The roundtable showcased how Children’s National and other health care institutions are using evidence-based strategies to improve medical care experiences for autistic people and their families. Ideally any provider, including pediatric neurologists, who cares for people from the autism community, can incorporate any or all of these strategies as a way to meet the unique needs of this patient population.

The content was so timely and relevant to the audience that many attendees stayed past the official end of the meeting to continue discussing best practices with the panelists and each other.

CASD Posters

Bridging gaps in autism care through technology

CASD Posters

CASD Faculty Member and Clinical Psychologist, Dr. Allison Ratto (top left); Postdoctoral Fellow, Dr. Marissa Miller, (top right); and Research Assistants, Eleonora Sadikova (bottom left) and Laura Saldana (bottom right) presented posters at ABCT.

Technology’s potential to improve care delivery and reduce human suffering were the key focus of discussion at the recent Annual Convention of the Association for Behavioral and Cognitive Therapies (ABCT), held in Washington, D.C.

Within ABCT’s Autism Spectrum and Developmental Disabilities Special Interest Group (ASDD SIG), presentations showcased tools that leverage technology to better meet the needs of both autistic people and the clinicians who care for them. Researchers from the Center for Autism Spectrum Disorders (CASD) at Children’s National took center stage at the ASD focused group to share information about novel developments underway that harness technology for children and families.

Lauren Kenworthy, Ph.D., director of CASD, served as the keynote speaker for the ASDD SIG Meeting. She also chaired a panel, “Leveraging Technology to Improve Autism Acceptance and Treatment” and presented, ” Online Parent Training Modules to Improve Executive Function in Autistic Children” about the e-Unstuck and On Target Parent Training Study, which adapts CASD’s successful classroom-based Unstuck and On Target toolkit for children ages 5 to 10 to an online platform so more families can benefit from the program’s skills and strategies.

Dr. Kenworthy was honored with the 2018 Transformative Contribution Award from the ABCT Autism Spectrum and Developmental Disabilities Special Interest Group for her lifetime of contributions to better understanding and better interventions for young people with ASD.

“It was a special honor to receive this recognition from ABCT this year, when the annual meeting is here in our home city,” says Dr. Kenworthy. “The Center for Autism Spectrum Disorders is focused on developing technology solutions that deliver therapies to everyone who needs them, no matter where they live, and technology is one powerful and promising way we can bridge care gaps both in the Washington, D.C. region and really, around the world.”

CASD Talks

Dr. Lauren Kenworthy presenting during the panel she chaired (top); presenting to the ASDD SIG (bottom left); and receiving the ASDD SIG Transformative Award from ASDD SIG Awards Committee Chair, Dr. Tyler Hassenfeldt (bottom right).

In addition to Dr. Kenworthy, several other CASD researchers presented research during panels and poster presentations, including:

  • Panel Presentation: Efficacy of a Parent-Mediated Sexual Education Curriculum for Youth With ASD”– Cara Pugliese, Ph.D.
  • Poster presentations:
    • “Evidence of Enhanced Social Skills in Young Dual-Language Learners on the Autism Spectrum”- Allison Ratto, Ph.D. (first author)
    • “Exploring Contributors to Parents’ Ideal and Realistic Goals for Involvement in School Training”-Marissa Miller, Ph.D. (first author)
    • “Examining Caregiver Well-Being and Service Use between Latino and Non-Latino Caregivers”-Laura Saldana (first author)
    • “Pre-Pubertal Signs of Future Gender Dysphoria in Youth with ASD”-Eleonora Sadikova (first author)

The Association for Behavioral and Cognitive Therapies Annual Convention has been held for more than half a century. The gathering includes 3,500-plus mental health professionals and students who specialize in cognitive and behavioral therapies.

Research and Education Week awardees embody the diverse power of innovation

cnmc-research-education-week

“Diversity powers innovation” was brought to life at Children’s National April 16 to 20, 2018, during the eighth annual Research and Education Week. Children’s faculty were honored as President’s Award winners and for exhibiting outstanding mentorship, while more than 360 scientific poster presentations were displayed throughout the Main Atrium.

Two clinical researchers received Mentorship Awards for excellence in fostering the development of junior faculty. Lauren Kenworthy, Ph.D received the award for Translational Science and Murray M. Pollack, M.D., M.B.A., was recognized in the Clinical Science category as part of Children’s National Health System’s Research and Education Week 2018.

Dr. Kenworthy has devoted her career to improving the lives of people on the autism spectrum and was cited by former mentees as an inspirational and tireless counselor. Her mentorship led to promising new lines of research investigating methods for engaging culturally diverse families in autism studies, as well as the impact of dual language exposure on cognition in autism.

Meanwhile, Dr. Pollack was honored for his enduring focus on motivating early-career professionals to investigate outcomes in pediatric critical care, emergency medicine and neonatology. Dr. Pollack is one of the founders of the Collaborative Pediatric Critical Care Research Network. He developed PRISM 1 and 2, which has revolutionized pediatric intensive care by providing a methodology to predict mortality and outcome using standardly collected clinical data. Mentees credit Dr. Pollack with helping them develop critical thinking skills and encouraging them to address creativity and focus in their research agenda.

In addition to the Mentorship and President’s Awards, 34 other Children’s National faculty, residents, interns and research staff were among the winners of Poster Presentation awards. The event is a celebration of the commitment to improving pediatric health in the form of education, research, scholarship and innovation that occurs every day at Children’s National.

Children’s Research Institute (CRI) served as host for the week’s events to showcase the breadth of research and education programs occurring within the entire health system, along with the rich demographic and cultural origins of the teams that make up Children’s National. The lineup of events included scientific poster presentations, as well as a full slate of guest lectures, educational workshops and panel discussions.

“It’s critical that we provide pathways for young people of all backgrounds to pursue careers in science and medicine,” says Vittorio Gallo, Ph.D., Children’s chief research officer and CRI’s scientific director. “In an accelerated global research and health care environment, internationalization of innovation requires an understanding of cultural diversity and inclusion of different mindsets and broader spectrums of perspectives and expertise from a wide range of networks,” Gallo adds.

“Here at Children’s National we want our current and future clinician-researchers to reflect the patients we serve, which is why our emphasis this year was on harnessing diversity and inclusion as tools to power innovation,” says Mark L. Batshaw, M.D., physician-in-chief and chief academic officer of Children’s National.

“Research and Education Week 2018 presented a perfect opportunity to celebrate the work of our diverse research, education and care teams, who have come together to find innovative solutions by working with local, national and international partners. This event highlights the ingenuity and inspiration that our researchers contribute to our mission of healing children,” Dr. Batshaw concludes.

Awards for the best posters were distributed according to the following categories:

  • Basic and translational science
  • Quality and performance improvement
  • Clinical research
  • Community-based research and
  • Education, training and program development.

Each winner illustrated promising advances in the development of new therapies, diagnostics and medical devices.

Diversity powers innovation: Denice Cora-Bramble, M.D., MBA
Diversity powers innovation: Vittorio Gallo, Ph.D.
Diversity powers innovation: Mark L. Batshaw, M.D.

Little girl eating

Daily tasks harder for girls with ASD

Little girl eating

Researchers found that girls with autism struggle with day-to-day functioning and independence skills more than boys.

Researchers at the Center for Autism Spectrum Disorders at Children’s National found something surprising in their recent study of executive function and adaptive skills. Girls, who often score well on direct assessments of communication skills, struggle more than boys with crucial tasks such as making a plan, getting organized and following through, as well as basic daily tasks like getting up and getting dressed, or making small talk.

“When parents were asked to rate a child’s day-to-day functioning, it turns out that girls were struggling more with these independence skills. This was surprising because in general, girls with ASD have better social and communication skills during direct assessments. The natural assumption would be that those communication and social skills would assist them to function more effectively in the world, but we found that this isn’t always the case,” says Allison Ratto, Ph.D., a psychologist in the Center for Autism Spectrum Disorders and one of the study’s authors. “Our goal was to look at real world skills, not just the diagnostic behaviors we use clinically to diagnose ASD, to understand how people are actually doing in their day to day lives.”

Conducted by a team within the Center for Autism Spectrum Disorders, the National Institute of Mental Health and The George Washington University, the study is the largest to date examining executive function and adaptive skills in women and girls with autism spectrum disorders (ASD).

The study collected parent-reported data from several rating scales of executive function and adaptive behavior, including the Behavior Rating Inventory of Executive Function, Parent Form (BRIEF) and the Vineland Adaptive Behavior Scales-II (VABS-II). The group included 79 females and 158 males meeting clinical criteria for autism spectrum disorders, ranging in ages from 7 to 18 years old. The groups were matched for intelligence, age and level of autism and ADHD symptoms.

Little is known about autism in females

The findings are part of a growing body of research focused on how ASD may affect females differently than males. The ratio of girls to boys with autism is approximately one to three. As a result of the larger numbers of males, existing data is predominantly focused on traits and challenges in that population. This is especially true in clinical trials, where enrollment is overwhelmingly male.

“Our understanding of autism is overwhelmingly based on males, similar to the situation faced by the medical community once confronted with heart disease research being predominantly male,” notes Lauren Kenworthy, Ph.D., director of the Center for Autism Spectrum Disorders and the study’s senior author. “We know how to identify signs, symptoms and treatments for autism in males, but we know very little about unique aspects of it in females.”

The historical lack of specific discovery around how autism presents in females may contribute to misdiagnosis or delay, and prevent implementation of necessary interventions. Such delays can have a major impact on outcomes, as recent research has demonstrated the critical importance of early diagnosis and intervention in ASD.

“Our focus in caring for children with autism is equipping all of them with strategies and skills to allow them to function and succeed in day-to-day living,” Dr. Kenworthy continues. “This study highlights that some common assumptions about the severity of challenges faced by girls with ASD may be wrong, and we may need to spend more time building the adaptive and executive function skills of these females if we want to help them thrive.”

“Enhancing our understanding of how biological differences change the presentation of autism in the long term is crucial to giving every person with ASD the tools they need to succeed in life,” she concludes.

Laura Anthony and Lauren Kenworthy IMFAR

Tools for diverse populations with autism

Laura Anthony and Lauren Kenworthy IMFAR

Laura Anthony, Ph.D., and Lauren Kenworthy, Ph.D., from Children’s Center for Autism Spectrum Disorders shared their knowledge and research findings at the International Meeting for Autism Research.

Researchers, doctors and parents of autistic children seem to all agree on one truth: If you’ve met one child with autism, you’ve met one child with autism. That fact helps to explain why every spring, researchers and clinicians from around the world gather for the International Meeting for Autism Research (IMFAR) – it’s a key opportunity to connect with some of the most respected investigators and stakeholder partners in the research community, and to understand the similarities as well as the differences between autistic populations around the world. Through three days of keynote and panel discussions as well as hundreds of poster presentations on a variety of topics, IMFAR aims to exchange and disseminate the latest scientific and clinical progress in Autism Spectrum Disorders (ASD) to this global audience of scientists and trainees.

This year, ten faculty members, staff and volunteers from the Center for Autism Spectrum Disorders (CASD) at Children’s National attended IMFAR, and presented on a variety of topics related to better understanding the complex challenges of ASD, especially in diverse patient populations such as Latinos and young adults with gender dysphoria.

Laura Anthony, Ph.D., clinical psychologist within CASD, led a panel session entitled, “Addressing Disparities through Interventions in Diverse Community Systems,” which highlighted four community based intervention projects aimed at tackling the vast disparities that exist in screening, diagnosis, acceptance, inclusion and access to evidence-based care, based on populations.

“Each of these studies takes place in very different community contexts,” says Dr. Anthony, “but they share common themes of addressing disparities, using intensive stakeholder input and community partnerships to increase successful adoption, and achieving sustainability through harnessing the existing community-based resources to administer the interventions.”

The panel presentations featured studies from Children’s National as well as other research institutions:

  • Anthony’s co-investigation of the Sesame Workshop’s online tools called See Amazing in All Children and their effectiveness at providing useful education and resources for parents of children with ASD and at helping parents of non-ASD children feel more accepting of children on the spectrum.
  • Lauren Kenworthy, Ph.D., presented findings from the first study comparing two school-based cognitive-behavioral interventions developed by Children’s National and Ivymount, a school for children with autism, ADHD and other special needs. The interventions target executive function/problem solving and increase children’s availability for learning at school. As the interventions are provided by school staff in the school setting, they hold promise to reach the many children who otherwise have no access to specialized clinical care for these disorders. As evidence of this, approximately half of the children in this large scale project in low-income public/charter schools had not received a diagnosis of ADHD or autism prior to the study.
  • A study of the impacts of a stakeholder-informed primary care program to increase the rate of screening and referral for young Latino children (Georgetown University).
  • An analysis of one program’s efforts to increase the use of evidence-based practices in publically-funded mental health centers (University of California, San Diego; University of California, Los Angeles; and University of Illinois).
Allison Ratto Poster IMFAR

Allison Ratto, Ph.D., a clinical psychologist at the CASD, presented a poster entitled “Engaging Latino Families in ASD Treatment Research,” the first assessment of this type of effort to bring information and tools to Latino families in a way that makes them accessible.

Despite having vastly different designs, the panel also identified several common learned lessons from the studies. These include the amount of time required to build trusting relationships in previously neglected communities, and the need for creative and adaptive methodologies. Additionally, the importance of including individuals with ASD, their families and people in the community systems that serve them in stakeholder feedback sessions, and the need for specialized adaptations for each community’s unique needs.

Team members also presented ten research posters across a variety of specialty poster sessions, including Allison Ratto, Ph.D., a clinical psychologist at the CASD, who presented “Engaging Latino Families in ASD Treatment Research,” the first assessment of this type of effort to bring information and tools to Latino families in a way that makes them accessible.

“By developing an adaptive and flexible program, we were able to gain high levels of engagement from Latino families, who previously faced significant barriers to participation. The results show that if researchers take additional steps to build community trust and maintain stakeholder engagement, it is possible to recruit and retain study participants, and ultimately, meet the needs of underserved families.” Dr. Ratto concludes. Her poster was featured in a story in Spectrum News.

“IMFAR is definitely the premier opportunity to dialogue across disciplines and study methods,” says Dr. Kenworthy, who directs the CASD. “We hope that sharing our work at this prestigious meeting brings new understanding for our team and our colleagues in how to best meet the unique needs of psychologically, ethnically and economically diverse patients and families.”