Tag Archive for: Lauren Kenworthy

Drs. Wells and Kenworthy

Center for Neuroscience and Behavioral Medicine announces new leaders

Drs. Wells and Kenworthy

Elizabeth M. Wells, M.D., M. H. S., was named Senior Vice President of the Center for Neuroscience and Behavioral Medicine, and Lauren Kenworthy, Ph.D., was named division chief of Neuropsychology.

The Center for Neuroscience and Behavioral Medicine at Children’s National Hospital recently announced the appointment of two new leaders. Elizabeth M. Wells, M.D., M. H. S., was named Senior Vice President of the Center for Neuroscience and Behavioral Medicine, and Lauren Kenworthy, Ph.D., was named division chief of Neuropsychology.

Dr. Wells obtained her undergraduate degree in psychology and biology at Harvard University and her medical degree at the George Washington University School of Medicine and Health Sciences. She was an Intramural Research Training Award fellow at the National Institute of Mental Health and holds a master’s in Health Science from the NIH/Duke Clinical Research Training Program. She completed pediatrics and neurology training at Children’s National and joined the faculty in the Brain Tumor Institute in 2011.

Dr. Wells has led the Children’s National Inpatient Neurology program and developed the hospital’s multidisciplinary Neuro-immunology program into a destination program for unsolved neuroinflammatory diseases. She serves on numerous national and international associations and working groups and is a member of the scientific selection committee for the Child Neurology Society.

Dr. Wells has served in leadership roles for the Clinical and Translational Science Institute at Children’s National and the District of Columbia Intellectual and Developmental Disabilities Research Center. She is principal investigator for a 10-year translational research study within the Children’s National partnership with the National Institute of Allergy and Infectious Diseases and was the Children’s National Hospital Medical Staff President from 2020-2022.

Dr. Kenworthy received a B.A. from Yale University and Ph.D. from the University of Maryland. She completed her internship and residency training in clinical psychology/pediatric neuropsychology at Harvard Medical School, Children’s Hospital Boston, Johns Hopkins Medical School and Mount Washington Pediatric Hospital. She has been on the faculty at Children’s National and GW since 1995. She is a national leader in autism research, as well as a distinguished author and speaker.

Young girl with paints

Autism Center of Excellence finds tools to avoid late diagnosis of women, others

Young girl with paints

Longitudinal data shows that girls and women are the most likely to be misdiagnosed or missed using traditional methods of assessment for autism.

The National Institute of Mental Health awarded $12.5 million to three institutions, including Children’s National Hospital, to become an Autism Center of Excellence. The goal of the research is to help autistic adolescents and adults receive timely and appropriate services and supports to improve overall outcomes. It is co-led by Lauren Kenworthy, Ph.D., at the Center for Autism Spectrum Disorders at Children’s National, Kevin Pelphrey, Ph.D., at the University of Virginia, and Allison Jack, Ph.D., from George Mason University,

The research will focus on developing screeners to identify people for autism assessment who traditionally have a high risk of a late or missed diagnosis.

Why it matters

Late or missed diagnosis puts people with autism spectrum disorder at greater risk for depression, anxiety and self-harm. It can also prevent access to supports through schools or other community organizations. Some people are misdiagnosed with other mental health conditions such as bipolar or borderline personality disorder leading to inappropriate treatments.

Longitudinal data shows that girls and women are the most likely to be misdiagnosed or missed using traditional methods of assessment for autism.

The hold-up in the field

There are two big reasons why truly autistic people fail to be identified. First, previous work to understand and diagnose autistic people was done based on data from mostly white, young, male participants. The tools do a very good job identifying autism that presents similarly to those study participants.

Kenworthy says the research community took a very long time (too long, perhaps) to recognize that many people with autism have a wide range of experiences both positive and negative that can inform diagnosis.

This relates to the second big hold-up in the field: that researchers have also been slow to recognize the importance of listening to the experiences of autistic people. Dr. Kenworthy says that for years, clinicians have known that diagnosing anxiety means asking the person how they feel inside. That same approach was rarely used with autistic people. “We need to listen to the people who are experiencing this or we are going to miss a lot,” she points out.

What’s next

The new Autism Center of Excellence has three main aims for the 5 years of funding.

  • Collect large amounts of behavioral and cognitive phenotyping data
  • Conduct qualitative interviews with autistic people using those data
  • Validate the development of the Self-Assessment of Autistic Traits — a tool that seeks to do a better job accelerating identification of people who need to be assessed for autism spectrum disorders but don’t necessarily meet the criteria of the current screeners.

Children’s National leads the way

This collaboration continues previous work the Center for Autism Spectrum Disorders has done with neuroimagers including Pelphrey and Jack to understand how autism and autism interventions affect the brain and builds on it by adding the experience of researchers from the autistic community.

The neuroimaging teams will use technology such as functional magnetic resonance imaging (fMRI), data analysis and genetic tools to find biomarkers and phenotypes that reflect what is learned from people with autism who experienced a missed or late diagnosis.

The end result will be a validated tool developed with people who experience autism, that gives people with autism, clinicians and researchers a unique new tool for identifying autistic strengths and challenges.

Kenworthy says it’s the two pieces coming together that will be the game-changer. “The technology, the biomarkers and phenotypes are really important, but aren’t meaningful until we understand how that maps onto the lived experience of autism.”

Paper cutouts of silhouette

Successful autism and ADHD tools go digital

Paper cutouts of silhouette

A team is working to implement a successful, evidence-based online training and tele-support system for the Unstuck and On Target (UOT) program.

A team from Children’s National Hospital, Children’s Hospital Colorado and The Institute for Innovation and Implementation at the University of Maryland, Baltimore is working to implement a successful, evidence-based online training and tele-support system for the Unstuck and On Target (UOT) program. The program is now available for free to any parent or educator who needs it.

What is it?

Since 2020, this team has piloted UOT video training with 293 school-based staff across 230 elementary schools in Colorado and Virginia. The work follows a related PCORI-funded research project, Improving Classroom Behaviors Among Students with Symptoms of Autism Spectrum Disorder or Attention Deficit Hyperactivity Disorder, led by Children’s National and Children’s Colorado researchers. That project demonstrated the effectiveness of UOT at improving the executive functioning – or self-regulation skills including flexible thinking, planning and emotional-control – of school-aged children in Title 1 schools. The training focuses on the executive function of elementary school-aged children with autism spectrum disorder (ASD) or attention deficit hyperactivity disorder (ADHD).

In addition to creating more accessible training for educators, the team created short, free videos highlighting executive functioning tips and tricks that parents can employ at home. These videos, evaluated by 100 parents and revised based on their input, are now available to parents nationwide.

The availability of this training is possible due to a $2 million contract awarded to Children’s Hospital Colorado’s (Children’s Colorado) Pediatric Mental Health Institute and Children’s National by the Patient-Centered Outcomes Research Institute (PCORI) in 2020.

Why it matters

There are many children, including those in low-income or rural settings, that don’t have access to clinics that offer services to support executive functioning skills, such as planning and flexibility, that they need. But all children have access to a school. Now, UOT training is online and accessible so any school with internet access can offer UOT where school staff (including special educators, teachers, paraprofessionals and counselors) can actively teach students how to plan, set goals and be flexible. The team’s next goal is to create a comparable video training for the high school version of UOT.

“These free, accessible and effective tools for improving children’s social-emotional development are building skills that are more important today than ever,” said Lauren Kenworthy, Ph.D., director of the Center for Autism Spectrum Disorders at Children’s National. “The vast majority (96%) of caregivers and educators found these tools useful and relevant. That feedback is a testament to our team’s efforts to make sure these resources were created and validated as usable, approachable and actionable for everyone who needs them.”

More information

For educators – Find resources on Unstuck and On Target, including links to the free trainings, tips and tricks and FAQs. Teachers can also receive continuing education credits (CEUs) for this training.

For parents – Find resources on Unstuck and On Target’s parent training videos

For schools – Add free Unstuck and On Target parent videos to your school district’s relevant websites, landing pages and newsletters.

boy with autism blowing bubbles

Autistic youth self-reporting critical to understanding of executive function challenges

boy with autism blowing bubbles

Young people with autism are distinctly aware of their own challenges in areas such as flexibility, working memory and inhibition—abilities known collectively as “executive function,” according to the first study to measure and compare self-reports in these areas to more traditional reporting from parents.

Young people with autism are distinctly aware of their own challenges in areas such as flexibility, working memory and inhibition — abilities known collectively as “executive function,” according to the first study to measure and compare self-reports in these areas to more traditional reporting from parents. The study appears in the Journal Autism.

While autism research has started to focus on incorporating the experiences of autistic people themselves through self-reporting and greater inclusion in the design and execution of related research, this is the first time that a study has definitively captured self-reports of executive functions directly from young people with autism.

The study, which included 197 autistic youth, found that while both youth and their parents are in basic agreement about which areas of executive functioning that individual youth struggle with most, parents tended to report higher levels of impairment than the youth reported themselves. Executive function is related to a person’s ability to complete tasks such as adjusting to change, making a plan, getting organized and following through, as well as basic daily tasks like getting up and getting dressed or making small talk.

“While parents are reporting on outwardly observed behaviors in the context of home/community, for example, youth are reporting on their inner experiences across many contexts,” said Lauren Kenworthy, Ph.D., first author on the study and director of the Center for Autism Spectrum Disorders at Children’s National Hospital. “Our findings support the idea that autistic youth may be drawing their conclusions from different environmental data and cognitive frameworks than their parents, which adds a new dimension to our understanding of executive function in people with autism.”

The data are especially compelling because youth and parent reports of executive function were gathered on parallel measures with consistent items and factor structure, allowing for a true one-to-one comparison between youth and parent reporting.

“These kids are very aware of the areas where they struggle,” Dr. Kenworthy said. “And the findings from this study further elevate the importance of making sure that assessments of executive function take into account the perspective of the youth themselves, which can provide powerful insights into the interventions that they may benefit from the most.”

The study also compared reports from autistic youth to reports from both neurotypical youth and those with attention deficit hyperactivity disorder (ADHD), another condition where executive functioning skills can be challenged. There were distinct differences between all three groups—and the challenges profiled by youth with autism and those with ADHD were distinct from each other. For example, autistic youth reported greater challenges with flexibility, emotional control and self-monitoring than those with ADHD, who reported greater struggles with working memory.

The authors noted that future studies should include more performance-based measures, as well as larger numbers of females and people with intellectual disabilities to better understand how self-reporting can play a role in understanding and helping these specific groups. Additionally, developing new measures that capture the inner experience of autism by engaging autistic people in their creation could provide deeper insight into how young people with autism experience the world and how interventions designed to assist them are working (or not).

“These data provide clear evidence of the executive functioning challenges actually experienced by autistic youth as well as the primary role inflexibility plays in the lives of these young people,” the authors concluded. “This additional perspective and context for the experiences of these executive functioning challenges are of high clinical value and complement more frequently gathered assessments in ways never captured before.”