Creating Accessible Survey Instruments for Use with Autistic Adults and People with Intellectual Disability: Lessons...

Area of Science:

• Autism research methodology
• Participatory research in disability studies
• Survey instrument adaptation

Background:

• Most survey instruments are not validated for autistic adults, hindering research on their needs.
• Effective research requires accessible tools that accurately capture the experiences of autistic individuals.
• Collaborative adaptation of surveys is crucial for improving the lives of autistic adults.

Purpose of the Study:

• To share lessons learned from adapting survey instruments in partnership with autistic adults.
• To provide recommendations for researchers on making survey instruments accessible to autistic adults.
• To promote participatory research approaches in autism studies.

Main Methods:

• Institutional ethnography of two research partnerships (2006-2019).
• Participatory research approach involving autistic adults and individuals with intellectual disabilities.
• Review and adaptation of multiple survey instruments across six studies.

Main Results:

• Identified common issues with existing instruments: difficult vocabulary, complex structure, imprecise options, context-dependent responses, anxiety, lack of autism-specific items, and ableist language.
• Common adaptations included simplifying language, clarifying structure, adding definitions (hotlinks), incorporating graphics, and developing new autism-specific items.
• Cautioned against using non-adapted instruments, emphasizing the need for rigorous testing with autistic adults.

Conclusions:

• Collaborative adaptation is essential for creating accessible and valid survey instruments for autistic adults.
• Researchers should partner with autistic individuals to ensure instruments accurately measure intended constructs.
• Improved survey methodology will lead to more effective interventions and services for the autistic community.