Communication Research Priorities for Autism Research: Insights from a Caregiver Survey

Area of Science:

• Developmental Psychology
• Speech and Language Pathology
• Autism Spectrum Disorder Research

Background:

• Stakeholder involvement in autism research is increasing.
• Limited understanding exists regarding research priorities within the autism community.
• Caregiver input is crucial for directing relevant autism research.

Purpose of the Study:

• To identify caregiver priorities for autism research focusing on language and communication in children.
• To explore barriers and incentives for caregiver participation in autism research.
• To understand how child language skills relate to caregiver research priorities.

Main Methods:

• Online survey administered to 73 caregivers of autistic children.
• Caregivers ranked 15 communication research topics by importance.
• Follow-up feedback sessions conducted with 14 participants.

Main Results:

• Caregivers highly prioritized research on word learning, echolalia, and reading acquisition.
• 87% of caregivers would participate in non-intervention autism studies.
• Time was the primary barrier, while virtual study format was the top incentive.
• Research on word learning was crucial for children with limited verbal skills; abstract language research was important for those with advanced skills.

Conclusions:

• Caregivers of autistic children place significant value on pediatric language and communication research.
• Priorities align with clinical therapy goals (e.g., word learning) and understanding complex communication (e.g., echolalia).
• Findings can guide future autism research by incorporating caregiver-identified priorities.