Creating Accessible Survey Instruments for Use with Autistic Adults and People with Intellectual Disability: Lessons Learned and Recommendations.
Christina Nicolaidis, Dora M Raymaker, Katherine E McDonald and 9 others
PMID 32355908WHAT IT FOUND
Autistic adults and people with intellectual disability often find standard survey questions confusing, anxiety-inducing, or culturally invalid.
Researchers must adapt language, response options, and context with community partners to get accurate data, rather than relying on unvalidated general-population measures.
Key findings
01Community partners reported that unadapted instruments caused significant confusion, frustration, anxiety, or anger, leading them to offer unreliable answers or drop out.
02Standard Likert scales with vague terms like 'sometimes' were problematic, as dichotomous yes/no options were also rejected by autistic partners for lacking nuance.
03Existing measures often failed to capture autism-specific barriers, such as sensory sensitivities or communication differences, requiring the addition of new items.
STILL TO COME
How it was doneWhat they foundWhat it means for SLPs
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What it does not show
The findings are based on the experiences of two specific academic-community partnerships, which may not represent the broader autism community. The review relies on historical artifacts and recollections, some of which may be incomplete or lost. The community partners involved were selected for their interest in research, which may bias the findings toward those who are more comfortable with survey methods. The paper does not report the results of the studies themselves, only the process of creating the measures.
Declared interests
The work was supported by the National Institutes of Health (AASPIRE) and the Centers for Disease Control (Partnering Project). The authors include both academic researchers and community partners (autistic adults and people with intellectual disability) who co-led the work.
The easy way to misread this
Do not interpret this paper as evidence that adapted surveys improve patient care or clinical outcomes directly. It reports on the methodology of research instrument creation, not on the efficacy of any therapeutic intervention.