A Comparison of Parent-Reported Severe Autism With Mild/Moderate Autism Among US Children

Area of Science:

• Neurodevelopmental Disorders
• Child Psychology
• Public Health

Background:

• A new definition of "profound" autism has been proposed for children with severe autism spectrum disorder (ASD) characteristics.
• It remains unclear if parental descriptions of "severe" autism align with this proposed definition.
• This study investigates the overlap between parent-reported severe autism and the proposed "profound" autism criteria.

Purpose of the Study:

• To estimate the prevalence of parent-reported severe autism in the US.
• To identify characteristics associated with severe autism in children.
• To compare healthcare utilization, caregiver stress, and resilience in families of children with severe versus mild/moderate autism.

Main Methods:

• Utilized data from the 2018-2019 National Survey of Children's Health (NSCH).
• Compared school-aged children with parent-reported severe autism to those with mild/moderate autism.
• Employed descriptive statistics, chi-squared tests, and logistic regression for analysis.

Main Results:

• 10.1% of parents (1 in 333 children) reported severe autism.
• Children with severe autism were more likely to have intellectual disability, language delays, and self-care difficulties.
• Despite increased needs, children with severe autism did not have higher rates of specialist visits or autism-specific therapy; their caregivers reported higher stress and lower resilience.

Conclusions:

• Parent-reported "severe" autism significantly overlaps with the characteristics of "profound" autism.
• The NSCH is a valuable resource for studying this vulnerable population.
• Children with profound/severe autism may benefit from increased access to behavioral therapy, specialty care, and family support.