PTOTSLPQualitativeJournal of developmental and behavioral pediatrics : JDBP2024

Elucidating the Perspectives of Autistic Youth About Their Health Care Experiences: A Qualitative Study.

Belinda O'Hagan, Sarah Foster, Amy Ursitti and 4 others

PMID 37871276

WHAT IT FOUND

Autistic youth prioritized sensory accommodations, clear communication, and patient involvement in care decisions.

They valued clinicians who offered choices, used visual prompts, and built trust over time. Waiting rooms and unexpected procedures were common barriers to comfort.

Key findings

01Participants preferred clinicians who offered care options, used visual prompts, and provided sensory accommodations like stress balls or alternative waiting spaces.

02Sensory stimuli in waiting rooms, such as noise and smells, and unexpected medical procedures were significant barriers that increased anxiety.

03Building trust required repeated positive interactions over time, with participants valuing clinicians who went beyond the immediate appointment scope to support well-being.

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 sample was small (8 participants) and consisted only of English-speaking autistic youth who could vocally communicate in a group setting. Participants did not represent minimally verbal autistic individuals, who make up about 30% of the autistic population. Most participants’ autism diagnoses were self-reported without formal verification. The study was conducted in the northeastern United States, which may limit the transferability of findings to other geographic or socioeconomic contexts.

Declared interests

The authors declare no conflict of interest.

The easy way to misread this

Do not generalize these findings to all autistic individuals, particularly those who are minimally verbal or non-speaking, as the study only included participants who could vocally communicate in a group setting.

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