PTOTSLPSurveyJournal of developmental and behavioral pediatrics : JDBP2024

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

Paul S Carbone, Carole H Stipelman, Michele E Villalobos and 4 others

PMID 39413304

WHAT IT FOUND

Children with parent-reported severe autism had higher rates of intellectual disability, language delays, and emergency visits, but were no more likely to receive behavioral therapy or see specialists than those with mild/moderate autism.

Caregivers faced significantly higher stress and financial burden.

Key findings

01Children with severe autism were approximately 3 times more likely to visit the emergency department but were hospitalized in similar proportions.

02Parents of children with severe autism were not more likely to report their child receiving autism-specific behavioral treatment or taking medication for autism, emotions, concentration, or behavior.

03Parents of children with severe autism had a 4-fold greater likelihood of needing to stop or reduce work hours due to their child’s health.

STILL TO COME

How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs

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What it does not show

The study is cross-sectional, so it cannot prove that severe autism causes these outcomes, only that they are associated. All data relies on parent reports, which were not verified by medical records. Parents may underreport intellectual disability due to stigma or lack of formal diagnosis. The definition of 'severe' autism was based on parent rating, which may not align perfectly with clinical definitions of profound autism. The survey excluded institutionalized children, so it does not represent the most severe cases who may live in care facilities.

Declared interests

The authors declare no conflicts of interest.

The easy way to misread this

Do not assume that children with severe autism are receiving more intensive therapy because they have more complex needs. This study found they were no more likely to receive behavioral therapy or see specialists than children with mild autism, despite higher rates of emergency visits and caregiver stress.

Read it on PubMed →