Imagine a big celebration day in your school, and the teachers have all kinds of fun activities planned. You're looking forward to the change of pace. You enter your first classroom for the day and are surprised to find your student mid-meltdown. "I just don't understand," the teacher says. "Today is supposed to be an easy, fun day. Why is he having these behaviors?"

Sound familiar? If you work with autistic children, it might. You may wonder about effective approaches, particularly in light of the Neurodiversity Movement. Goodwin et al. interviewed 50 families of autistic children who experienced regular anxiety, which the authors connected to “Intolerance of Uncertainty.” This is described as a type of trauma response involving emotional, cognitive, and behavioral distress when situations are uncertain or unpredictable. Autistic individuals may experience intolerance of uncertainty due to the double empathy problem and masking (i.e., having to decipher neurotypical behaviors and adjust their own to fit in) and difficulty with skills like executive function and making predictions.

The researchers asked parents to describe situations that were difficult for their children, including one situation that was non-negotiable (e.g., school or medical visits) and one that the child wanted to be able to do (like birthday parties or extracurricular activities). Frequently reported difficult situations included school and after-school clubs, shopping, visiting new places, family outings, playing with friends, hobbies, and more. 

These distressing events affected both autistic children and their parents in many ways: 

• Children’s reactions included repetitive behaviors, stimming, and distress to the point of shutdown or meltdown. Children often tried to reduce uncertainty by avoiding situations or trying to take control (children who are labeled with escape/avoidance behaviors or described as “rigid” or “bossy” come to mind here). These situations often lead to feelings of guilt and low self-esteem, and missing out on school or activities the children enjoyed.
• Parents reported spending a lot of time and energy trying to make the world comfortable for their children by altering routines, preparing for events, and dealing with school issues (e.g., early dismissals due to behavior). Parents worried about their children’s futures, wished for more hours in the day to help their children, and wanted the world to be more understanding.

“Parents wished that the world would be more tolerant and understanding of their child.”

 

– Goodwin et al., 2021

This article is eye-opening, and we highly recommend reading it to get a deeper understanding of how anxiety can affect behavior. If the descriptions in the article remind you of children on your caseload, consider teaming up with the school psychologist or counselor and discussing a trauma-informed approach to intervention. As SLPs, we might not be as involved in the mental health/anxiety piece, but we can help our students make sense of uncertain situations by learning to make accurate inferences and predictions, solve problems, and communicate their worries and needs effectively. Just as importantly, we should make sure that everyone working with our students knows how to make appropriate accommodations (e.g., by providing consistent schedules in the students’ most successful modality), can recognize and respond empathetically to students’ signs of anxiety when we can’t reduce uncertainty, and understands that behavior is a way for kids to communicate what’s going on inside. 

Neurodiversity note: This study highlighted the autistic experience as well as the parent experience and included autistic adults as equal members on the research team. This is exactly what we need to inform neurodiversity-aligned services!

Goodwin, J., Rob, P., Freeston, M., Garland, D., Grahame, V., Kernohan, A., Labus, M., Osborne, M., Parr, J. R., Wright, C., & Rodgers, J. (2021). Caregiver perspectives on the impact of uncertainty on the everyday lives of autistic children and their families. Autism. https://doi.org/10.1177/13623613211033757 [open access]