Research In Action

Research In Action

Standing Up to Bullying for Youth with Autism Spectrum Disorder: A Quality Improvement Approach
October 26, 2021

Over the past two years, our team of several members of the Center for Violence Prevention (CVP) and Injury Science Research Experiences for Undergraduates (REU) students, used a quality improvement process to address how Developmental and Behavioral Pediatrics (DBP) providers at Children's Hospital of Philadelphia (CHOP) screen for and address the issue of bullying in children with high-functioning autism spectrum disorders (HF-ASD).

The DBP Provider’s Perspective

To build upon our own clinical observations that youth and adolescents with HF-ASD experience bullying victimization at a high rate, and that this is often a major concern for families, we surveyed DBP providers to gain their perspective. What we found was that:

  • Virtually all providers thought that youth with HF-ASD are victimized by peers at school, with the majority saying at least ‘often.’
  • The top five contributing factors toward bullying victimization of children with HF-ASD were felt to be difficulties with reading social cues; understanding common social conventions; picking up on others’ intentions; taking things too literally; and entering peer groups.
  • The most commonly reported form of bullying was verbal, followed by relational and cyber. The least frequently reported form was physical. Providers viewed all four types of bullying as harmful to extremely harmful for youth with HF-ASD.
  • While providers indicated that they are quite likely to address all forms of bullying (other than cyber), they rated themselves as “slightly” to “somewhat” confident addressing all forms (other than cyber).
    • When addressing cyberbullying, providers rated themselves between “not at all” and “slightly” confident.
    • Less than half of providers reported being aware of resources for HF-ASD and bullying victimization.

Learning How to Address Bullying Among Youth With HF-ASD

Using this information, we shifted to the development of interventions to help DBP providers feel more comfortable discussing bullying with youth with HF-ASD. We used quality improvement tools to choose the most beneficial strategies, which initially focused on provider education at divisional meetings and making a CVP psychologist available for bullying-related consults.

This past summer, our intervention focused on the creation of additional HF-ASD-specific resources for providers to share with families. Our aim was to encourage discussion with families about bullying prevention and mitigation strategies. We also  hoped that by increasing available resources, providers would feel better equipped to have those discussions. We found that compared to the two months prior to this intervention, bullying was discussed more often in follow-up visits (38% of visits vs 25% of visits). This short-term progress has been especially motivating for our team.

Lessons Learned

The major lessons we’ve learned from this process center around the importance of clinical outcomes.

  • Choose outcome measures that reflect true clinical outcomes. In order to monitor our project’s impact, we chose to measure how often DBP providers used standardized bullying screening questions. In tracking this measure over time, we learned that this did not necessarily reflect whether bullying was addressed, as DBP providers may screen for bullying without using these standardized questions. In the future we will consider better outcome measures that reflect true clinical outcomes, such as provider confidence in addressing the topic of bullying.
  • Provide direct support to families. During the project, we also realized that concrete next-steps to empower families would have a more meaningful impact than provider-focused interventions, so we shifted to the creation of patient resources. 

In a future post, I will provide some tips that providers can share with families of youth with HF-ASD who are experiencing bullying. With our lessons learned propelling us forward, our team will continue to evaluate ways to support youth with HF-ASD and their families around bullying.

We will need to consider the impact of the COVID-19 pandemic, which brought changes to the educational setting for many students and potentially the loss of opportunities to practice building social skills. We will also need to fine-tune the screening questions used by DBP providers in order to streamline the process of referral to appropriate resources. Eventually we hope to offer a social skills-based curriculum designed for youth with HF-ASD who are at-risk for bullying in order to develop self-advocacy skills and peer relationship skills in those situations.