Autism & Developmental

Using self-report to explore the relationship between anxiety and quality of life in children on the autism spectrum.

Adams et al. (2019) · Autism research : official journal of the International Society for Autism Research 2019
★ The Verdict

Difficulty handling uncertainty is the top anxiety reason autistic kids feel lousy across life areas—treat that skill first.

✓ Read this if BCBAs running social-skills or anxiety groups with elementary-to-middle-school autistic clients.
✗ Skip if Clinicians serving only non-verbal teens or adults; uncertainty tools differ.

01Research in Context

01

What this study did

Adams et al. (2019) asked 71 autistic children aged 6-13 to fill out simple anxiety and quality-of-life forms. The kids circled answers about how they felt at school, with friends, and in their bodies.

The team then used stats to see which anxiety signs best predicted lower life-quality scores.

02

What they found

Difficulty with uncertainty was the strongest predictor of poor quality of life. It hurt social, emotional, physical, and school domains alike.

Other anxiety traits mattered, but the "I hate not knowing what will happen" feeling carried the biggest punch.

03

How this fits with other research

Waldron et al. (2023) saw the same uncertainty link in preschoolers, showing the pattern starts early. Dawn’s work extends that finding up through middle-school years.

Potvin et al. (2015) already proved autistic kids reliably report lower quality of life than peers. Dawn adds the why: anxiety, especially around uncertainty, is a key driver.

Menezes et al. (2021) mapped irritability and withdrawal to matching life-quality drops. Dawn’s anxiety lens dovetails with that domain-specific story, pointing clinicians toward a concrete target—uncertainty tolerance—instead of broad "anxiety management."

04

Why it matters

If a child melts down over schedule changes or new foods, you may be seeing uncertainty distress that quietly drags down every life domain. Screen for it with a quick child self-report, then teach flexibility scripts, preview upcoming changes, and reinforce calm coping. Small boosts in tolerance can ripple into better school, social, and emotional outcomes.

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Add one "preview card" to your session: show the day’s agenda with picture icons and mark any change with a bright star, then rehearse a calm phrase like "A change means I can be okay."

02At a glance

Intervention
not applicable
Design
survey
Sample size
71
Population
autism spectrum disorder
Finding
negative
Magnitude
large

03Original abstract

Anxiety is now recognized as one of the most common conditions that co-occur with autism. While there has been increased research describing the typical and autism-specific anxiety symptomatology and assessing the effectiveness of potential interventions, there has been less research exploring the impact that elevated anxiety may have on an individual and their quality of life (QoL). This study aimed to explore the impact of anxiety on the QoL in children on the autism spectrum. Children and young adolescents on the spectrum were invited to participate in a self-report study measuring anxiety and health-related QoL (HRQoL). The sample consisted of 71 children, aged 6-13. Children who scored above the cut off for elevated anxiety on the autism-specific measure of anxiety (ASC-ASD) had poorer total HRQoL and poorer scores on the social, emotional, physical, and school functioning QoL domains. Regression analyses indicate that children's self-reported ratings of difficulties with uncertainty on the ASC-ASD predicted all domains of HRQoL, with higher levels of difficulty with uncertainty predicting poorer HRQoL. Elevated levels of anxious arousal were also predictive of poorer physical functioning. This study highlights the importance of exploring the impact of anxiety on individuals on the spectrum and suggests that using carefully planned interventions to reduce difficulties with uncertainty may be a potential way to work toward improving the QoL of children on the spectrum. Autism Res 2019, 12: 1505-1515. © 2019 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: Research has shown us that individuals on the autism spectrum are more likely to have poor "quality of life" or general well-being. Because many individuals with a diagnosis on the autism spectrum also receive a diagnosis of anxiety, this study looked at whether a child's autism symptoms or their anxiety have a bigger impact on their quality of life. Children on the autism spectrum completed questionnaires and the results showed us that one factor, difficulty with uncertainty, had the biggest impact on the child's quality of life.

Autism research : official journal of the International Society for Autism Research, 2019 · doi:10.1002/aur.2155