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Cited by 210Survey Methodology and NonresponseAutism Spectrum Disorder ResearchPsychometric Methodologies and Testing

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

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Nicolaidis, Christina, Raymaker, Dora M., McDonald, Katherine E., Lund, Emily M., Leotti, Sandra, Kapp, Steven K., Katz, Marsha, Beers, Leanne M. +4 more·2020·Autism in Adulthood
DOI 10.1089/aut.2019.0074PMC PMC7188318
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Abstract

Despite growing appreciation of the need for research on autism in adulthood, few survey instruments have been validated for use with autistic adults. We conducted an institutional ethnography of two related partnerships that used participatory approaches to conduct research in collaboration with autistic people and people with intellectual disability. In this article, we focus on lessons learned from adapting survey instruments for use in six separate studies. Community partners identified several common problems that made original instruments inaccessible. Examples included: (1) the use of difficult vocabulary, confusing terms, or figures of speech; (2) complex sentence structure, confusing grammar, or incomplete phrases; (3) imprecise response options; (4) variation in item response based on different contexts; (5) anxiety related to not being able to answer with full accuracy; (6) lack of items to fully capture the autism-specific aspects of a construct; and (7) ableist language or concepts. Common adaptations included: (1) adding prefaces to increase precision or explain context; (2) modifying items to simplify sentence structure; (3) substituting difficult vocabulary words, confusing terms, or figures of speech with more straightforward terms; (4) adding hotlinks that define problematic terms or offer examples or clarifications; (5) adding graphics to increase clarity of response options; and (6) adding new items related to autism-specific aspects of the construct. We caution against using instruments developed for other populations unless instruments are carefully tested with autistic adults, and we describe one possible approach to ensure that instruments are accessible to a wide range of autistic participants. Lay summary: Why is this topic important?: To understand what can improve the lives of autistic adults, researchers need to collect survey data directly from autistic adults. However, most survey instruments were made for the general population and may or may not work well for autistic adults. What is the purpose of this article?: To use lessons learned from our experience adapting surveys—in partnership with autistic adults—to create a set of recommendations for how researchers may adapt instruments to be accessible to autistic adults. What did the authors do?: Between 2006 and 2019, the Academic Autism Spectrum Partnership in Research and Education (AASPIRE) and the Partnering with People with Developmental Disabilities to Address Violence Consortium used a participatory research approach to adapt many survey instruments for use in six separate studies. We reviewed records from these partnerships and identified important lessons. What is this recommended adaptation process like?: The adaptation process includes the following: (1) Co-creating collaboration guidelines and providing community partners with necessary background about terminology and processes used in survey research; (2) Collaboratively selecting which constructs to measure; (3) Discussing each construct so that we can have a shared understanding of what it means; (4) Identifying existing instruments for each construct; (5) Selecting among available instruments (or deciding that none are acceptable and that we need to create a new measure); (6) Assessing the necessary adaptations for each instrument; (7) Collaboratively modifying prefaces, items, or response options, as needed; (8) Adding “hotlink” definitions where necessary to clarify or provide examples of terms and constructs; (9) Creating new measures, when needed, in partnership with autistic adults; (10) Considering the appropriateness of creating proxy report versions of each adapted measure; and (11) Assessing the adapted instruments' psychometric properties. What were common concerns about existing instruments?: Partners often said that, if taking a survey that used the original instruments, they would experience confusion, frustration, anxiety, or anger. They repeatedly stated that, faced with such measures, they would offer unreliable answers, leave items blank, or just stop participating in the study. Common concerns included the use of difficult vocabulary, confusing terms, complex sentence structure, convoluted phrasings, figures of speech, or imprecise language. Partners struggled with response options that used vague terms. They also felt anxious if their answer might not be completely accurate or if their responses could vary in different situations. Often the surveys did not completely capture the intended idea. Sometimes, instruments used offensive language or ideas. And in some cases, there just were not any instruments to measure what they thought was important. What were common adaptations?: Common adaptations included: (1) adding prefaces to increase precision or explain context; (2) modifying items to simplify sentence structure; (3) substituting difficult vocabulary words, confusing terms, or figures of speech with more straightforward terms; (4) adding hotlinks that define problematic terms or offer examples or clarifications; (5) adding graphics to increase clarity of response options; and (6) adding new items related to autism-specific aspects of the construct. How will this article help autistic adults now or in the future?: We hope that this article encourages researchers to collaborate with autistic adults to create better survey instruments. That way, when researchers evaluate interventions and services, they can have the right tools to see if they are effective.

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  • In research on autistic individuals, it is essential to adapt the survey format, such as using precise language, providing the option to take breaks, or allowing respondents to complete it on their personal devices.

    “In research on autistic individuals, it is essential to adapt the survey format, such as using precise language, providing the option to take breaks, or allowing respondents to complete it on their personal devices [32].”

    From The Entry of Autistic University Graduates into the Labor Market in the Era of Generative AI: Their Concerns and Strategies Regarding the Technology. Research in Progress: The Entry of Autistic Graduates into the Labor Market in the Era of GenAI (2026) · cites this paper as [32]

    The Discussion recommends adapting surveys for autistic adults and paying close attention to precise, concrete language. The passages in our copy do not support the additional examples of allowing breaks or completion on respondents’ personal devices. (LLM, conf=0.87)

    Experimental — accuracy not yet measured

  • For autistic people, co-occurring mental health difficulties can lead to negative outcomes including poor quality of life.

    “For autistic people, co-occurring mental health difficulties can lead to negative outcomes including poor quality of life3–5”

    From Approaches to improving mental healthcare for autistic people: Systematic review (2024) · cites this paper as [5]

    The Introduction (page unavailable) mentions mental health and other adult outcomes, while the Discussion (page unavailable) discusses adapting a quality-of-life measure for autistic adults. Neither passage says that co-occurring mental health difficulties can lead to poor quality of life. Searches for that relationship, including depression, anxiety, and life satisfaction, found no supporting passage in our copy. (LLM, conf=0.76)

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Research works printed but not linked: 1

  1. [48]Chavis D, Lee K, Acosta J. The sense of community (SCI) revised: The reliability and validity of the SCI-2. Paper presented at: 2nd International Community Psychology Conference, Lisboa, Portugal; 2008

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Authors
Nicolaidis, C., Raymaker, D. M., McDonald, K. E., Lund, E. M., Leotti, S., Kapp, S. K., Katz, M., Beers, L. M., Kripke, C., Maslak, J., Hunter, M., & Zhen, K. Y.
Affiliations
  • Portland State University (US)
  • Syracuse University (US)
  • University of Alabama (US)
  • University of Portsmouth (GB)
  • University of Montana (US)
  • Partnering with People with Developmental Disabilities to Address Violence Consortium, Missoula, Montana.
  • University of California, San Francisco (US)
  • Academic Autism Spectrum Partnership in Research and Education, Portland, Oregon.
Corresponding author
Nicolaidis, Christina
ORCID
Venue
Autism in Adulthood
Publisher
SAGE Publications
Published
2020-03-01
Volume
2
Issue
1
Pages
61-76
ISSN
  • 2573-9581 (ISSN-L)
  • 2573-959X
DOI
10.1089/aut.2019.0074
PMC
PMC7188318
OpenAlex
W3008675651
Cited by
210
References
59
Citations by year
2026: 54 · 2025: 52 · 2024: 42 · 2023: 22 · 2022: 21 · 2021: 14 · 2020: 5
FWCI
20.72
Type
journal article
Language
en
Open access
Licence
Locations
  • Autism in Adulthood (publishedVersion, cc-by-nc)
  • PubMed Central (publishedVersion, cc-by-nc)
  • PubMed (publishedVersion)
  • PDXScholar (Portland State University) (submittedVersion)
Funders
  • Portland State University
  • National Institutes of Health (RR024140, KL2TR002370)
  • Centers for Disease Control and Prevention
  • Oregon Clinical and Translational Research Institute (UL1RR024140, RR024140)
  • National Institute of Mental Health (R34MH111536, R34MH092503)
  • National Institute of General Medical Sciences (UL1GM118964, TL4GM118965, RL5GM118963)
  • National Center for Research Resources (UL1RR024140)
  • National Center for Advancing Translational Sciences
Topics
  • Social Sciences › Sociology and Political Science › Survey Methodology and Nonresponse
  • Life Sciences › Neuroscience › Cognitive Neuroscience › Autism Spectrum Disorder Research
  • Social Sciences › Decision Sciences › Management Science and Operations Research › Psychometric Methodologies and Testing
Keywords
autistic adults, intellectual disability, accessibility, participatory research, community partnerships, research collaboration, co-creation, institutional ethnography

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