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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.”

INSAR 2019 logo

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