Eric Rubenstein1,2, Sarah Furnier1,3. 1. Waisman Center, University of Wisconsin-Madison, Madison, Wisconsin, USA. 2. Department of Epidemiology, Boston University School of Public Health, Boston, Massachusetts, USA. 3. Department of Population Health Sciences, University of Wisconsin-Madison, Madison, Wisconsin, USA.
Abstract
Internet-based online surveys are a crucial tool for researchers to learn about the understudied and often overlooked population of autistic adults. The recruitment and administration of online surveys can be cheaper, quicker, and have a wider reach compared with more traditional in-person methods. As online surveys become more prevalent, it is important to place strengths in the context of limitations and biases that can arise when recruiting and administering surveys online. In this perspective, we discuss two common issues that often appear in studies that use online tools to recruit and administer surveys to autistic adults and nonautistic volunteers: selection bias and sample identifiability. Selection bias is the distortion in effect estimates (e.g., relative risk, risk ratio, incidence rate) resulting from the factors that influence why a person chose to participate or how the researcher recruits and selects participants in a study. Sampling identifiability is the ability (or inability) to quantify and define the population of interest. We use a case example of an online survey study of suicidal ideation in autistic adults and describe how issues in selection bias and sample identifiability arise and may lead to challenges unique to studying autistic adults. We conclude with recommendations to improve the quality and utility of online survey research in autistic adults. Using online resources to recruit and collect data on autistic adults is an incredible tool with great potential; yet, authors need to consider the limitations, potential biases, and tools to overcome systematic error at each stage of the study. LAY SUMMARY: What is the purpose of this article?: Our purpose was to describe challenges in conducting and analyzing data from surveys of autistic adults, recruited and completed online.What is already known on the topic?: Health outcomes for autistic adults are understudied by crucial areas of autism research. While researchers are interested in the outcomes of autistic adults, this type of research is difficult because many autistic adults are not formally diagnosed, so not available to recruit for studies through clinic registries. Furthermore, study participation can be a long, inconvenient, and stressful process. It is not surprising then that we are seeing internet surveys of autistic adults become a popular tool to reach this population. We wanted to offer an overview and recommendations of these issues to researchers and people who read research about topics pertaining to autistic adults.What are the perspectives of the authors?: We are epidemiologists at Boston University and the University of Wisconsin-Madison. We both conduct research centered in improving health and well-being for autistic people across the life span. As people who study research methods, we have seen a lot of new research using survey methods. This research is intriguing, but all too often the articles need more information so we can be sure that the research is high quality. We want to share ways to improve this type of research and to help people in understanding the strengths and limitations of online survey research.What do the authors recommend?: We offer a few considerations for researchers working in this area. (1) Make the steps you took to do the research as clear as possible. (2) Be specific about who you intend to study and who you ended up studying. (3) Present the demographics and characteristics of the participants. (4) If possible, consider using data analysis methods to account for selection bias and sample identifiability issues. (5) Do not make statements that are not supported for your study results. (6) Acknowledge that we are at the beginning of studying autistic adults. (7) Advocate for more funding for research in autistic adults.How will these recommendations help autistic adults now or in the future?: Online surveys are an important tool for researchers to generate hypotheses and connect with a wider range of participants. However, online surveys have unique methodological challenges. We hope that this perspective raises the topic of bias and misinterpretation in online surveys and researchers continue to produce valid and meaningful work that is crucial to improving lives of autistic adults. Copyright 2021, Mary Ann Liebert, Inc., publishers.
Internet-based online surveys are a crucial tool for researchers to learn about the understudied and often overlooked population of autistic adults. The recruitment and administration of online surveys can be cheaper, quicker, and have a wider reach compared with more traditional in-person methods. As online surveys become more prevalent, it is important to place strengths in the context of limitations and biases that can arise when recruiting and administering surveys online. In this perspective, we discuss two common issues that often appear in studies that use online tools to recruit and administer surveys to autistic adults and nonautistic volunteers: selection bias and sample identifiability. Selection bias is the distortion in effect estimates (e.g., relative risk, risk ratio, incidence rate) resulting from the factors that influence why a person chose to participate or how the researcher recruits and selects participants in a study. Sampling identifiability is the ability (or inability) to quantify and define the population of interest. We use a case example of an online survey study of suicidal ideation in autistic adults and describe how issues in selection bias and sample identifiability arise and may lead to challenges unique to studying autistic adults. We conclude with recommendations to improve the quality and utility of online survey research in autistic adults. Using online resources to recruit and collect data on autistic adults is an incredible tool with great potential; yet, authors need to consider the limitations, potential biases, and tools to overcome systematic error at each stage of the study. LAY SUMMARY: What is the purpose of this article?: Our purpose was to describe challenges in conducting and analyzing data from surveys of autistic adults, recruited and completed online.What is already known on the topic?: Health outcomes for autistic adults are understudied by crucial areas of autism research. While researchers are interested in the outcomes of autistic adults, this type of research is difficult because many autistic adults are not formally diagnosed, so not available to recruit for studies through clinic registries. Furthermore, study participation can be a long, inconvenient, and stressful process. It is not surprising then that we are seeing internet surveys of autistic adults become a popular tool to reach this population. We wanted to offer an overview and recommendations of these issues to researchers and people who read research about topics pertaining to autistic adults.What are the perspectives of the authors?: We are epidemiologists at Boston University and the University of Wisconsin-Madison. We both conduct research centered in improving health and well-being for autistic people across the life span. As people who study research methods, we have seen a lot of new research using survey methods. This research is intriguing, but all too often the articles need more information so we can be sure that the research is high quality. We want to share ways to improve this type of research and to help people in understanding the strengths and limitations of online survey research.What do the authors recommend?: We offer a few considerations for researchers working in this area. (1) Make the steps you took to do the research as clear as possible. (2) Be specific about who you intend to study and who you ended up studying. (3) Present the demographics and characteristics of the participants. (4) If possible, consider using data analysis methods to account for selection bias and sample identifiability issues. (5) Do not make statements that are not supported for your study results. (6) Acknowledge that we are at the beginning of studying autistic adults. (7) Advocate for more funding for research in autistic adults.How will these recommendations help autistic adults now or in the future?: Online surveys are an important tool for researchers to generate hypotheses and connect with a wider range of participants. However, online surveys have unique methodological challenges. We hope that this perspective raises the topic of bias and misinterpretation in online surveys and researchers continue to produce valid and meaningful work that is crucial to improving lives of autistic adults. Copyright 2021, Mary Ann Liebert, Inc., publishers.
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