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Leveraging Feedback from Autistic Adults to Develop an App to Access Healthcare Services

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Title: Leveraging Feedback from Autistic Adults to Develop an App to Access Healthcare Services
Language: English
Authors: Megan Best, RaeAnne Lindsay, Sarah Demissie, Isabelle Burakov, Saury Ramos-Torres, Meghan M. Burke (ORCID 0000-0001-5287-2351)
Source: Journal of Developmental and Physical Disabilities. 2026 38(1):143-164.
Availability: Springer. Available from: Springer Nature. One New York Plaza, Suite 4600, New York, NY 10004. Tel: 800-777-4643; Tel: 212-460-1500; Fax: 212-460-1700; e-mail: customerservice@springernature.com; Web site: https://link.springer.com/
Peer Reviewed: Y
Page Count: 22
Publication Date: 2026
Sponsoring Agency: Health Resources and Services Administration (HRSA) (DHHS)
Contract Number: UT2MC39440
Document Type: Journal Articles
Reports - Research
Descriptors: Feedback (Response), Autism Spectrum Disorders, Adults, Computer Oriented Programs, Access to Health Care, Health Services, Computer Software, Access to Information, Help Seeking
DOI: 10.1007/s10882-025-10017-9
ISSN: 1056-263X
1573-3580
Abstract: Autistic individuals are more likely to have co-occurring healthcare conditions and experience a cascade of health disparities compared to those that are not autistic. While ample research continues to be conducted to decrease these disparities, it is often done without the input from autistic individuals. In this qualitative study, we interviewed 15 autistic participants to explore how a healthcare services app could be adapted for autistic adults. Overall, participants agreed that a healthcare services app specific to autistic adults could be beneficial. In addition, participants provided feedback on healthcare services, filter options, and software features to include in the app. Participants reported what they found to be most valuable within a healthcare services app prototype designed for autistic adults, such as having all healthcare information in one place, receiving support when seeking accommodations from healthcare providers, and accessing resources. Implications for research and practice are discussed.
Abstractor: As Provided
Entry Date: 2026
Accession Number: EJ1508537
Database: ERIC
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  Value: <anid>AN0191658798;jdp01feb.26;2026Feb20.06:02;v2.2.500</anid> <title id="AN0191658798-1">Leveraging Feedback From Autistic Adults to Develop an App to Access Healthcare Services </title> <p>Autistic individuals are more likely to have co-occurring healthcare conditions and experience a cascade of health disparities compared to those that are not autistic. While ample research continues to be conducted to decrease these disparities, it is often done without the input from autistic individuals. In this qualitative study, we interviewed 15 autistic participants to explore how a healthcare services app could be adapted for autistic adults. Overall, participants agreed that a healthcare services app specific to autistic adults could be beneficial. In addition, participants provided feedback on healthcare services, filter options, and software features to include in the app. Participants reported what they found to be most valuable within a healthcare services app prototype designed for autistic adults, such as having all healthcare information in one place, receiving support when seeking accommodations from healthcare providers, and accessing resources. Implications for research and practice are discussed.</p> <p>Keywords: Autism; Healthcare; Technology; User-centered design; Medical and Health Sciences Public Health and Health Services</p> <p>Supplementary Information The online version contains supplementary material available at https://doi.org/10.1007/s10882-025-10017-9.</p> <p>Individuals with developmental disabilities (DD), including autism, experience a cascade of health disparities (Krahn et al., [<reflink idref="bib23" id="ref1">23</reflink>]). Especially during the COVID- 19 pandemic, adults with (versus without) autism struggled to access healthcare services (Baweja et al., [<reflink idref="bib3" id="ref2">3</reflink>]). The need for healthcare services may be compounded for autistic adults as they are significantly more likely to have co-occurring health conditions including epilepsy, anxiety, depression, abnormal sleep patterns, diabetes, and cardiovascular disease (Brookman-Frazee et al., [<reflink idref="bib6" id="ref3">6</reflink>]; Davignon et al., [<reflink idref="bib12" id="ref4">12</reflink>]). Despite the increased likelihood of co-occurring health conditions which may necessitate more healthcare services, there are many barriers to accessing healthcare services. Such barriers include lack of knowledge about healthcare services (Williamson et al., [<reflink idref="bib47" id="ref5">47</reflink>]), challenges in executive functioning and planning to access healthcare services (Mason et al., [<reflink idref="bib29" id="ref6">29</reflink>]), and systemic barriers in navigating complex bureaucracies with unique norms and regulations for each provider (Taylor et al., [<reflink idref="bib43" id="ref7">43</reflink>]).</p> <p>Technology (e.g., mobile apps) may help improve access to healthcare services among autistic adults. To date, research has shown that apps can be helpful for autistic adults. For example, some apps help autistic adults stay organized for their daily tasks and appointments (Haoues & Mokni, [<reflink idref="bib16" id="ref8">16</reflink>]). Indeed, autistic adults often benefit from the structure, routine, and predictability which is embedded naturally in technology (Valencia et al., [<reflink idref="bib44" id="ref9">44</reflink>]). Further, studies show that autistic adults like using technology because interactions with technology occur in safe and trustworthy environments (Valencia et al., [<reflink idref="bib44" id="ref10">44</reflink>]). Unfortunately, even though there is evidence that apps can be successful among autistic adults, there are no extant apps that aim to increase access to healthcare services (e.g., general doctor, sleep clinician, reproductive healthcare, nutritionist) among autistic adults. Prior research suggests that the limited accessibility of healthcare information makes it difficult for autistic adults to determine healthcare decisions (Nicolaidis et al., [<reflink idref="bib31" id="ref11">31</reflink>]). The purpose of this study was to garner feedback from autistic adults to develop an app that improves access to healthcare services.</p> <p>At the most basic level, it is important to understand whether autistic adults believe an app could improve their access to healthcare services. Eliciting feedback from end users is not novel. Coined as human-centered design (Mohr et al., [<reflink idref="bib30" id="ref12">30</reflink>]), it is important to gain input from end users (e.g., autistic adults) when initially developing a technology. Unfortunately, input from end users is often not considered when designing technology (Dabbs et al., [<reflink idref="bib11" id="ref13">11</reflink>]). Indeed, individuals with disabilities are often excluded in the development process (Kim et al., [<reflink idref="bib22" id="ref14">22</reflink>]). By co-developing a program with the end user, technology is more likely to be successful as the technology is more likely to be accessible, appropriate, and effective (Dopp et al., [<reflink idref="bib13" id="ref15">13</reflink>]). The autistic community (Benevides et al., [<reflink idref="bib4" id="ref16">4</reflink>]) and the Interagency Autism Coordinating Committee ([<reflink idref="bib18" id="ref17">18</reflink>]) report that if technology were to incorporate the feedback of autistic adults, technology (including apps) could increase access to health services.</p> <p>With respect to a healthcare services app specifically, it is important to identify the services that should be reflected in the app. Regardless of whether an adult has autism, certain healthcare services may be warranted such as a primary care physician, a dentist or, depending on the gender of the adult, a gynecologist. Unique healthcare services may be needed for autistic adults. Such services may include neurology, gastroenterology, speech therapy, occupational therapy, and physical therapy (Zerbo et al., [<reflink idref="bib48" id="ref18">48</reflink>]). Most of the extant research about access to healthcare services relies on administrative datasets and/or caregiver reports establishing the disparities in access (e.g., Baweja et al., [<reflink idref="bib3" id="ref19">3</reflink>]; Brookman-Frazee et al., [<reflink idref="bib6" id="ref20">6</reflink>]); research does not elicit feedback directly from autistic adults themselves (Benevides et al., [<reflink idref="bib4" id="ref21">4</reflink>]). By interviewing autistic adults, we can better understand, from their perspective, which services are most needed and difficult to access.</p> <p>It is also important to elicit feedback from autistic adults about what filters may be beneficial in an app. Filters can help individualized the usefulness of the app by allowing the user to set relevant parameters (Jo et al., [<reflink idref="bib19" id="ref22">19</reflink>]). For example, geographic proximity is one of the most consistent predictors of choosing healthcare providers (Li et al., [<reflink idref="bib27" id="ref23">27</reflink>]; Love & Lindquist, [<reflink idref="bib28" id="ref24">28</reflink>]). Also, across the general population, a predictor of healthcare service access is the provider's accepted types of payment for the service (O'Connor, [<reflink idref="bib33" id="ref25">33</reflink>]). In addition, given the increase in the use of telehealth since the COVID- 19 pandemic (e.g., Haque, [<reflink idref="bib17" id="ref26">17</reflink>]), the availability of telehealth may be another filter in an app. Other potential filters may relate to accessibility such as the language spoken by the provider (Stahmer et al., [<reflink idref="bib41" id="ref27">41</reflink>], [<reflink idref="bib42" id="ref28">42</reflink>]) or whether the provider is neurodiverse-friendly (Nicolaidis et al., [<reflink idref="bib31" id="ref29">31</reflink>]). By identifying filters specific to the autistic community, an app can be more useful.</p> <p>Technology can only be effective if it has accessible software features. Raymaker and colleagues ([<reflink idref="bib36" id="ref30">36</reflink>]) partnered with The Academic Autism Spectrum Partnership in Research and Education (AASPIRE) to identify the physical, intellectual, and social accessibility guidelines that should be followed when creating an app for autistic people. Physical accessibility guidelines include different color palette options, consistency, no background clutter, and different font options. Intellectual accessibility guidelines include keeping everything simple, using examples when needed, including navigation help, and having concise content. Social accessibility guidelines include offering: specific language and clear and simple definitions of terms (Raymaker et al., [<reflink idref="bib36" id="ref31">36</reflink>]). Unfortunately, to date, few apps reflect the accessibility guidelines (Valencia et al., [<reflink idref="bib45" id="ref32">45</reflink>]).</p> <p>Finally, an app needs to be socially valid. Social validity is the practical significance of an intervention for its users (Ledford et al., [<reflink idref="bib25" id="ref33">25</reflink>]). In the context of an app for the autistic community, it is important to understand whether autistic adults value the goals, procedures, and outcomes of the app. By including autistic individuals in developing an app, it can help ensure that the app is not only practically significant but also unharmful (Schuck, [<reflink idref="bib39" id="ref34">39</reflink>]). Unfortunately, most intervention studies exclude the autistic perspective (Leadbitter et al., [<reflink idref="bib24" id="ref35">24</reflink>]; Pukki et al., [<reflink idref="bib34" id="ref36">34</reflink>]). By identifying the aspects of an app most socially valid to autistic adults, it can inform priorities in app development.</p> <p>Compared to the general population, autistic individuals often require more healthcare services (Gilmore et al., [<reflink idref="bib14" id="ref37">14</reflink>]). Yet, autistic adults face several barriers in accessing healthcare services (Nicolaidis et al., [<reflink idref="bib31" id="ref38">31</reflink>]). While not examined in relation to service access among autistic adults, other research has suggested that apps can be effective and feasible among autistic adults (e.g., increasing physical activity, Lee et al., [<reflink idref="bib26" id="ref39">26</reflink>]; accessing public transportation, Rezae et al., [<reflink idref="bib37" id="ref40">37</reflink>]). However, a common barrier to accessing technology is inaccessible design (Keates & Clarkson, [<reflink idref="bib20" id="ref41">20</reflink>]; Keates et al., [<reflink idref="bib21" id="ref42">21</reflink>]). If an app is refined using human-centered design (Mohr et al., [<reflink idref="bib30" id="ref43">30</reflink>]), the app may be more likely to be accessible, effective, and feasible among autistic adults. In this qualitative study, we explored how a healthcare services app could be adapted for autistic adults. Our research questions were: (<reflink idref="bib1" id="ref44">1</reflink>) How could an app be beneficial for autistic adults to access services?; (<reflink idref="bib2" id="ref45">2</reflink>) What healthcare services should be included in an app for autistic adults?; (<reflink idref="bib3" id="ref46">3</reflink>) What filters should be included in an app for autistic adults?; (<reflink idref="bib4" id="ref47">4</reflink>) What software features should be included in an app for autistic adults?; and (<reflink idref="bib5" id="ref48">5</reflink>) What do autistic adults find to be most valuable in an app?</p> <hd id="AN0191658798-2">Method</hd> <p></p> <hd id="AN0191658798-3">Participants</hd> <p>Altogether, there were 15 participants in this study. To be included in the study, participants were required to have a professional medical or self-diagnosis of autism and be 18 years of age or older. All but one participant had a professional medical diagnosis of autism (<emph>n</emph> = 14; 93.33%) and about half of participants received a professional medical autism diagnosis when they were an adult (<emph>n</emph> = 7; 46.67%). On average, participants were 37.93 years of age (<emph>SD</emph> = 10.00; range from 20 to 51). Most of the participants were White (<emph>n</emph> = 11; 73.33%). Participants were from 11 states across the United States. Slightly more than half of participants had a graduate level degree (<emph>n</emph> = 8; 53.33%). About half of participants identified as female (<emph>n</emph> = 7; 46.67%) and had co-occurring disabilities (<emph>n</emph> = 7; 46.67%). See Table 1. Most participants identified as "autistic," while also using terms such as "people with autism" or "aspies." Given the self-identification of participants and a review of the literature, we elected to utilize identity-first language throughout the manuscript.</p> <p>Table 1 Participant demographics and characteristics</p> <p> <ephtml> <table rules="groups"><thead><tr><th align="left"><p>Pseudonym</p></th><th align="left"><p>Racial/Ethnic background</p></th><th align="left"><p>Age</p></th><th align="left"><p>Gender</p></th><th align="left"><p>Highest education</p></th><th align="left"><p>Diagnosis type</p></th><th align="left"><p>Co-occurring disabilities</p></th></tr></thead><tbody><tr><td align="left"><p>Jordyn</p></td><td align="left"><p>Black</p></td><td align="left"><p>25</p></td><td align="left"><p>Woman, Non-binary, Genderqueer</p></td><td align="left"><p>Some college</p></td><td align="left"><p>Medical</p></td><td align="left"><p>Emotional or behavioral disorder</p></td></tr><tr><td align="left"><p>Timothy</p></td><td align="left"><p>White</p></td><td align="left"><p>20</p></td><td align="left"><p>Man, Transgender</p></td><td align="left"><p>Some college</p></td><td align="left"><p>Medical</p></td><td align="left"><p>Emotional or behavioral disorder</p></td></tr><tr><td align="left"><p>Sam</p></td><td align="left"><p>White</p></td><td align="left"><p>38</p></td><td align="left"><p>Prefer not to disclose</p></td><td align="left"><p>Some college</p></td><td align="left"><p>Medical</p></td><td align="left"><p>Multiple disabilities</p></td></tr><tr><td align="left"><p>Grant</p></td><td align="left"><p>White</p></td><td align="left"><p>21</p></td><td align="left"><p>Man</p></td><td align="left"><p>Some college</p></td><td align="left"><p>Medical</p></td><td align="left" /></tr><tr><td align="left"><p>Michael</p></td><td align="left"><p>Asian</p></td><td align="left"><p>41</p></td><td align="left"><p>Man, Transgender</p></td><td align="left"><p>Graduate</p></td><td align="left"><p>Medical</p></td><td align="left" /></tr><tr><td align="left"><p>Harper</p></td><td align="left"><p>White</p></td><td align="left"><p>48</p></td><td align="left"><p>Woman</p></td><td align="left"><p>Graduate</p></td><td align="left"><p>Medical</p></td><td align="left"><p>Multiple disabilities; Other health impairment; Orthopedic impairment</p></td></tr><tr><td align="left"><p>Tabitha</p></td><td align="left"><p>White</p></td><td align="left"><p>37</p></td><td align="left"><p>Woman</p></td><td align="left"><p>High school diploma</p></td><td align="left"><p>Medical and Self</p></td><td align="left"><p>Intellectual disability; Visual impairment</p></td></tr><tr><td align="left"><p>Lawrence</p></td><td align="left"><p>Human</p></td><td align="left"><p>47</p></td><td align="left"><p>Man</p></td><td align="left"><p>Graduate</p></td><td align="left"><p>Medical</p></td><td align="left" /></tr><tr><td align="left"><p>Katrina</p></td><td align="left"><p>White</p></td><td align="left"><p>44</p></td><td align="left"><p>Woman</p></td><td align="left"><p>Graduate</p></td><td align="left"><p>Medical</p></td><td align="left" /></tr><tr><td align="left"><p>Juliana</p></td><td align="left"><p>White</p></td><td align="left"><p>43</p></td><td align="left"><p>Woman</p></td><td align="left"><p>Graduate</p></td><td align="left"><p>Medical</p></td><td align="left" /></tr><tr><td align="left"><p>Jocelyn</p></td><td align="left"><p>White</p></td><td align="left"><p>42</p></td><td align="left"><p>Woman</p></td><td align="left"><p>Graduate</p></td><td align="left"><p>Medical</p></td><td align="left"><p>Orthopedic impairment</p></td></tr><tr><td align="left"><p>Abby</p></td><td align="left"><p>White</p></td><td align="left"><p>51</p></td><td align="left"><p>Woman</p></td><td align="left"><p>Graduate</p></td><td align="left"><p>Medical</p></td><td align="left"><p>Multiple disabilities; Other health impairment</p></td></tr><tr><td align="left"><p>Vance</p></td><td align="left"><p>Black and White</p></td><td align="left"><p>33</p></td><td align="left"><p>Non-binary, Agender, Transgender</p></td><td align="left"><p>Bachelor's</p></td><td align="left"><p>Self</p></td><td align="left"><p>Blind</p></td></tr><tr><td align="left"><p>Daniel</p></td><td align="left"><p>White</p></td><td align="left"><p>49</p></td><td align="left"><p>Man</p></td><td align="left"><p>Graduate</p></td><td align="left"><p>Medical</p></td><td align="left" /></tr><tr><td align="left"><p>Shane</p></td><td align="left"><p>Black</p></td><td align="left"><p>32</p></td><td align="left"><p>Man</p></td><td align="left"><p>Bachelor's</p></td><td align="left"><p>Medical</p></td><td align="left" /></tr></tbody></table> </ephtml> </p> <p>Total sample size <emph>n</emph> = 15</p> <hd id="AN0191658798-4">Recruitment</hd> <p>Participants were recruited in a variety of ways. Recruitment methods included word-of mouth as well as sharing information about the study via social media, flyers, and websites. Participants were specifically recruited from autistic self-advocacy organizations, both nationally and at state levels. When recruiting from these organizations, we often completed requests for posting our flyer that included providing IRB approval and confirming that our team was conducting research alongside co-researchers with disabilities, specifically autism. For each interview, each participant received a $25 gift card for a total of $75 if they participated in three interviews. Recruitment ended when redundancy of themes was reached.</p> <hd id="AN0191658798-5">Procedures</hd> <p>University Institutional Review Board (IRB) approval was received for this study. Upon receiving information about the study, interested individuals either contacted the research team and/or completed an interest form via REDCap. A researcher conducted a screening to ensure the individual met the inclusionary criteria (e.g., over the age of 18, professional medical or self-diagnosis of autism). If the individual met the inclusionary criteria, the researcher sent the consent form and demographic questionnaire to the participant. The demographic form included specific accommodations participants could select or self-report to have available during the interview (e.g., visually supported text, opportunity for breaks). Three interviews were conducted with each participant to build trust and double check statements (Seidman, [<reflink idref="bib40" id="ref49">40</reflink>]). After completing the questionnaire, the research team scheduled the date and time of the first interview, as preferred by the participant. At the end of the first interview, the second interview was scheduled; the third interview was scheduled at the end of the second interview. Participants were given the option of conducting the interview over Zoom or phone.</p> <p>All interviews were conducted and recorded, via Zoom, by trained members of the research team. The majority (<emph>n</emph> = 37; 82.22%) of interviews were co-conducted by two researchers (e.g., first, second, and third authors), including a co-researcher with a disability. The remaining interviews were conducted by one researcher due to limited research team availability. The first and third authors had prior experience with conducting individual interviews. At the beginning of the first interview, the research team member(s) introduced themselves and their connection to autistic adults. At the start of the second and third interviews, the research team member(s) asked rapport building statements (e.g., "How is your week going?"). During each interview, the research team members took detailed field notes. At the end of each co-conducted interview, the researchers debriefed together. In addition, all interviews were debriefed during a weekly meeting by the research team. On average, the first interview lasted 41.60 min (range 18–82 min), the second interview lasted 47.20 min (range 28–76 min), and the third interview lasted 54.80 min (range 28–94 min). Fidelity to the interview protocol was 100% (i.e., each participant was asked each of the protocol questions).</p> <hd id="AN0191658798-6">Instrumentation</hd> <p></p> <hd id="AN0191658798-7">Demographic Questionnaire</hd> <p>All participants completed a demographic questionnaire which included questions about themselves (e.g., gender, co-occurring disabilities). Participants were asked to indicate if they needed any accommodations during the interview(s) (e.g., receive interview questions in advance, enlarged text, app materials read aloud). The questionnaire took about 5–10 min to complete.</p> <hd id="AN0191658798-8">Interview Protocol</hd> <p>The interview protocols were developed based on extant literature about healthcare access and experiences for autistic adults (Calleja et al., [<reflink idref="bib8" id="ref50">8</reflink>]; Nicolaidis et al., [<reflink idref="bib32" id="ref51">32</reflink>]) and human-centered design (Dopp et al., [<reflink idref="bib13" id="ref52">13</reflink>]; Mohr et al., [<reflink idref="bib30" id="ref53">30</reflink>]). The protocols were co-developed by co-researchers with and without disabilities, including autism. As a result of this co-development, additional questions pertaining to advocacy and healthcare were added. The protocols were reviewed by faculty with expertise in autism. The protocol was also piloted with an adult with autism. As a result of the pilot, small changes were made to the protocol (e.g., minor wording changes to increase clarity, format, or arrangement of interview protocol questions).</p> <p>In the first interview protocol, participants were asked to share their healthcare experiences. In the second interview, participants were guided to review a pre-existing app designed for parents of young children with autism to access healthcare services for their child (Burke et al., [<reflink idref="bib7" id="ref54">7</reflink>]). This app has proven to increase access to healthcare services for parents of youth with autism. The interview team shared their screen to demonstrate and detail each aspect of the app while providing a verbal description of the purpose and functionality. Participants were asked to provide feedback about the app including aspects that should be kept, removed, or revised when adapting the app for autistic adults. Specifically, participants were asked about the 20 healthcare services included in the pre-existing app (Burke et al., [<reflink idref="bib7" id="ref55">7</reflink>]), the filters when searching for healthcare services (e.g., geographic location, language) and software features (e.g., color, size of text). Participants were asked if there were any accommodations that could be built into an app that would support their access to healthcare services. In the third interview, participants were asked to provide feedback on an app prototype developed by the research team to support healthcare access for autistic adults following the first and second interviews; the prototype reflected digital wire frames of the app. During this interview, the interview team shared their screen to show and provided verbal descriptions of the app prototype. Participants were asked for their opinion(s) on what should be added, removed, or revised in relation to: healthcare services, filters, software features, and accommodations. Probing questions such as, "How would you envision using this aspect of the app?" or "Do you feel this software feature would help increase your understanding of healthcare services and access?" were asked as part of the semi-structured interview protocol. As participants provided feedback, the interview team took live notes on the prototype that the participant could view. In addition, participants were asked questions about the app prototype such as what they considered most beneficial or useful. The interview protocols can be found in the supplemental materials.</p> <hd id="AN0191658798-9">Data Analysis</hd> <p>Interviews were transcribed verbatim. First, we used transcription software (e.g., Descript) to clean transcripts. Then, a research team member reviewed each transcript to ensure clarity, accuracy, and complete de-identification of participants. Six research team members read each transcript multiple times to familiarize themselves with the data (Tesch, 1990). An initial codebook was developed based on a review of the literature (Nicolaidis et al., [<reflink idref="bib31" id="ref56">31</reflink>]) and through constant comparative analysis (Glaser et al., [<reflink idref="bib15" id="ref57">15</reflink>]). Initially, each team member independently coded the same nine interviews from three participants (i.e., three interviews per participant). A line-by-line approach was used to individually code all data. Each piece of data was compared with other data, highlighted, and annotated with a specific phrase (Creswell et al., [<reflink idref="bib10" id="ref58">10</reflink>]). Each new piece of data was then compared with previously coded data to check if the new data was considered a new code or an existing code. For example, a line of data pertaining to adding calendar notifications may be identified as "Software Feature," "Add," "Calendar Notifications." The research team met weekly to compare codes and resolve differences. Once the nine transcripts were coded, the research team finalized a draft of the codebook. Then, all 45 transcripts were coded in pairs by five research team members. For example, a pair of research team members were assigned transcripts to code. Once each team member in the pair independently coded the transcript, the pair met to compare codes and resolve differences. Given that consensus was reached for any differences, intercoder reliability was not documented as part of the coding process. Weekly, all research team members met to discuss and reconcile codes as needed.</p> <p>Once all data were coded, the codes were grouped into categories and organized into themes grounded in the data. For example, the theme of "benefits of a healthcare app" was derived from the following categories: an app could hold all healthcare information, an app could provide different types of communication with providers, and an app could provide information and support when accessing healthcare services. If there were any disagreements when coding, team members met to discuss the codes until consensus was reached.</p> <hd id="AN0191658798-10">Researcher Identity</hd> <p>Our team included two university researchers, one doctoral student, one masters student, and two self-advocates with disabilities, one of whom has autism. Four members of our team identifiy as White, one team member identifies as Hispanic, and one team member identifies as African American. All team members identify as female. In addition, our team consisted of two family members of an individual with autism. Altogether, our author team had experience working alongside autistic adults as family members, advocates, service providers, and mentors; we each value self-determination among autistic individuals. Our professional and lived experiences were strengths in conducting this study. To address our experiences, we conducted whole and small group discussions throughout data analysis. Detailed field notes and meeting notes were taken and revisited alongside interview transcripts to aid group discussions. Each team member engaged in peer debriefing and group conversations to identify and mitigate their biases and to resolve disagreements through discussion.</p> <hd id="AN0191658798-11">Trustworthiness</hd> <p>The research team made several efforts to ensure the trustworthiness and credibility of the data and the themes. For example, member checking was conducted following the interviews (Brantlinger et al., [<reflink idref="bib5" id="ref59">5</reflink>]). Specifically, the research team created a written, 2–3 page summary of each interview for each participant to review. Among 15 participants, 11 responded to the member check; only two had feedback which included minor changes. Names were replaced with pseudonyms and identifiable information has been removed.</p> <hd id="AN0191658798-12">Findings</hd> <p></p> <hd id="AN0191658798-13">Benefits of a Healthcare App for Autistic Adults</hd> <p>All participants reported that an app could be beneficial to access healthcare services. Specifically, participants perceived the following benefits of an app: a central location for all healthcare information and a way of communicating with providers.</p> <hd id="AN0191658798-14">Benefit: A Central Location for All Healthcare Information</hd> <p>Many participants reported that an app could be a sole repository of their medical history, services, and appointments. Jordyn, a Black 25-year-old who lived in a midwestern state, struggled to keep all their healthcare documents and information organized. She shared, "The health app will help me have all of my records and all of my doctor's notes or just health tips that I need in place." Similarly, Lawrence, a White 47-year-old who lived in a Southern state, reported that an app which held his healthcare information would not only be beneficial for him, but also for others with disabilities. Lawrence reported, "If it [app] gives me that data and that summary and I'm able to access it and it interfaces properly, then it's very accommodating for someone with a disability." Many participants commented on an app that is a "one-stop-shop"for autistic adults. Jocelyn, a White 42-year-old woman from a Northeastern state, reported that she has never found an app that meets all her healthcare needs. She shared,</p> <p>Being an adult with autism and knowing that I need to have a to-do list, a calendar, and reminders to have my prescriptions refilled and stuff like that...I don't think any- I can't think of an app that exists that can do that.</p> <p>Overall, participants reported that a healthcare app designed for autistic adults to identify healthcare service providers, manage their healthcare data, and serve as a hub for resources to answer and address individual healthcare support needs would be beneficial to accessing all relevant healthcare information.</p> <hd id="AN0191658798-15">Benefit: A way of Communicating with Providers</hd> <p>Several participants reported that a healthcare app could improve their communication with providers. When asked about specific filters to seek healthcare services or accommodations that would be beneficial in an app, multiple participants reported being able to type or write to a provider or opt for telehealth options when able. Some participants reported that an app could replace or supplement verbal communication with providers. Timothy, a White 20-year-old college student in a northeastern state, reported struggling to call healthcare providers. He stated, "I think that an app could be helpful. I also don't like making phone calls in order to manage my health...I have to kind of script them [phone calls] out ahead of time." Juliana, a 43-year-old White woman from a large city on the west coast, reported that using an app would be, "much better than the old way of having to call them [providers] on the phone and then wait on hold for an inordinate amount of time. Or worse, have to actually go over to the office."</p> <hd id="AN0191658798-16">Diverse Types of Healthcare Services Should be Included in a Healthcare Services App</hd> <p>The majority of the participants (<emph>n</emph> = 12; 80%) reported that 19 of the original 20 services should be retained in the app. Specifically, most participants reported keeping the following services: allergist/asthma, assistive technology, audiologist, cardiologist, chiropractor, dentist, dermatologist, endocrinologist, gastrointestinal doctor, nutritionist, occupational therapist, obstetrics/gynecologist, optometrist, physical therapist, primary care physician, psychiatrist, pulmonologist, speech therapist, and urologist. See Fig. 1.</p> <p>Graph: Fig. 1 Services to be included in the app</p> <p>Notably, the service with the most mixed responses was applied behavior analysis (ABA). When asked about if ABA should be kept as a service, Lawrence responded hesitantly, "That [ABA] could be a very thorny topic to some people. I'm just not sure about that one." Across participants, about half responded that ABA could be kept as a service (<emph>n</emph> = 7), while the remaining participants stated they would like it removed (<emph>n</emph> = 4) or revised (<emph>n</emph> = 4). Of those who responded to keep ABA, most reported a desire to keep it for individuals who may benefit from ABA—even though they would not. Juliana, reported, "I know there's controversy about ABA, whether it's beneficial, whether it's appropriate, but I also know there are people who do feel that they benefit from it. If you're one of those people, you should have that option." While most participants stressed the inclusivity of the app, there were some participants who shared strongly that ABA should be removed from the app. When Harper, a 48-year-old White woman with multiple disabilities and health impairments, was asked if ABA should be kept, removed, or revised, she responded, "No. Unless you're going to put 'dominatrix' on there, I would not put applied behavior analysis because at least a dominatrix is, desired by some people and applied behavior analysis really just shames us for being who we are." Notably, some participants recommended revising ABA. Daniel, a 49-year-old White male who identified as a strong advocate for the autism community, provided greater context of the history of ABA and its harm to the community. Daniel shared, "And that's one of the reasons why the community is in such an uproar. But what is currently accepted as ABA is nothing like that. And so, there is good or modern ABA." Daniel went on to discuss revising ABA to include a description:You could say like, 'Modern ABA in some cases is beneficial, but if you don't want it, you don't need it, you don't have to get it.' You know, something that basically says this is here for those people on the spectrum who benefit and want ABA.</p> <p>Some participants reported adding services to the app. Specifically, participants requested adding: addiction specialist (<emph>n</emph> = 7), sonologist (<emph>n</emph> = 7), mental health counselor (<emph>n</emph> = 6), neurologist (<emph>n</emph> = 6), orthopedics (<emph>n</emph> = 6), podiatrist (<emph>n</emph> = 6), gender specialist (<emph>n</emph> = 5), geneticist (<emph>n</emph> = 5), ophthalmologist (<emph>n</emph> = 5), rheumatologist (<emph>n</emph> = 5), ear/nose/throat (ENT) doctor (<emph>n</emph> = 4), emergency room services (<emph>n</emph> = 4), geriatric doctor (<emph>n</emph> = 4), pediatrician (<emph>n</emph> = 4), psychologist (<emph>n</emph> = 4), urgent care (<emph>n</emph> = 4), oncologist (<emph>n</emph> = 4), oral surgeon (<emph>n</emph> = 3), orthodontist (<emph>n</emph> = 3), and proctologist (<emph>n</emph> = 3). For example, Harper explicitly called for adding a gender specialist because, "We [autistic adults] are more likely than the general population to have gender differences, to be even intersex, and that could cause other problems." To a lesser extent, participants suggested adding: education disability resource centers (<emph>n</emph> = 2), light therapy (<emph>n</emph> = 2), reiki (<emph>n</emph> = 2), testing options (<emph>n</emph> = 2), insurance providers (<emph>n</emph> = 1), scoliosis (<emph>n</emph> = 1), transportation (<emph>n</emph> = 1), vocational rehabilitation (<emph>n</emph> = 1), gerontology (<emph>n</emph> = 1), vaccines (<emph>n</emph> = 1), case manager (<emph>n</emph> = 1), dietitian (<emph>n</emph> = 1), healthcare consultant (<emph>n</emph> = 1), home healthcare aide (<emph>n</emph> = 1), nephrologist (<emph>n</emph> = 1), neuropsychology (<emph>n</emph> = 1), alternative medicine (<emph>n</emph> = 1), massage therapy (<emph>n</emph> = 1), and Rolfing (<emph>n</emph> = 1).</p> <hd id="AN0191658798-17">Preferred Filters in the Healthcare Services App</hd> <p>Among the participants, 40% (<emph>n</emph> = 6) reported that the app should have filters related to whether the provider conducts appointments via telehealth, language spoken of the provider, and payment (e.g., type of insurance) taken by the provider. Regarding telehealth, several participants reported the importance of telehealth. Simply put by Vance, a non-binary 33-year-old living in a midwest state who is also blind, "I would definitely ask to see if telehealth is a thing [something offered by a provider]." Vance reported that given the inconsistency of paratransit to attend in-person appointments, telehealth should be listed as an option for providers. In addition, some participants reported a filter is needed about the languages spoken by a provider. When asked about keeping the language filter, Sam, a 38-year-old White male living in a midwestern state, responded, "Yes, because right now I'm living in a multi-language household." Grant, a 21-year-old White male shared similarly: "Yes, [having a] Spanish speaking option does help. It is something that may be important to some people." Further, many participants reported that the app should have an insurance filter; participants reported that insurance greatly impacted their search for providers. When asked if an insurance filter should be included, Shane, a Black 32-year-old from a southern state, responded, "I think it is quite resourceful." Meanwhile, Abby, a 51-year-old White woman, identified that the payment filter should also include whether the provider accepted payment on a sliding scale as she was currently uninsured.</p> <p>Only 20% (<emph>n</emph> = 3) of participants reported wanting to revise a feature; specifically, three participants reported revising the zip code feature. Having recently moved from the city to the suburbs, Jordyn shared about the difficulties she faced in finding a good provider. Jordyn suggested, "I would love if there could be an option where you can turn your location on and find someone [provider] that's closer to you and where you live." Jocelyn shared a similar recommendation, "Maybe instead of geographic location, it could be within X miles of zip code, whatever. That seems to be a ubiquitous option for searching for anything located near you." While the geographic location was a meaningful filter option, there were opportunities to strengthen how it could be used and accessible for future users.</p> <p>To a lesser extent, some participants suggested additional filters. Requested filters included: whether the provider uses American Sign Language (ASL) (<emph>n</emph> = 2), whether the provider is neurodivergent affirming or autism friendly (<emph>n</emph> = 1), the public rating of the provider (<emph>n</emph> = 1), and whether the provider is accepting new patients (<emph>n</emph> = 1). Harper, an autism community group leader, recommended including ASL as part of the language filter: "Language is also important to whether they [provider] can use ASL, because if they're used to deaf people coming in, they'll know [they need] to face someone when they speak to them and things like that." With respect to whether the provider was autism friendly, Katrina, a 44-year-old White woman who leads an international autism group for autistic individuals and allies, suggested, "A rating from the client's perspective of how autism friendly this particular provider is- that would be super valuable to have in the app." Regarding a public rating of the provider, Daniel reported, "I would say it actually would want to do three [ratings] in this case... my rating, the rating of other people using the app, and then the general services ratings...that's all useful information."</p> <hd id="AN0191658798-18">Valuable Software Features</hd> <p>Participants consistently reported that for the app to be accessible to all autistic adults, it will need to include many software features. Grant summarized, "I'm thinking of how to make it [the app] as inclusive as imaginable." Accordingly, suggested software features included software features that promoted accessibility and software features that supported user knowledge and access when seeking healthcare services.</p> <hd id="AN0191658798-19">Software Features that Promote Accessibility Within the App</hd> <p>Participants often commented that the app should include a variety of accessibility features. Vance shared that an app must have a way to interface with a common screen reader: "Because I'm blind, I do most everything online with apps. I use it a lot. As long as there's a way for my screen reader to be able to read everything, I'm good. I'll use it." Meanwhile, Lawrence considered different aspects of the app that could be included, such as videos, stating,If there's videos, make sure you have audio descriptions or if you're hearing impaired, you know, just checking everything appropriately and making sure it meets all disability inclusivity as much as possible. You know, keeping those things in check so we meet everyone's needs and not leaving anyone behind.</p> <hd id="AN0191658798-20">Software Features that Promote user Knowledge and Access of Healthcare Services</hd> <p>Many participants requested specific software features be added to the app that could facilitate organization of information, showcase potential accommodations for health appointments, and provide resources about healthcare. Regarding organization, some participants suggested that the app include software features such as a healthcare to-do list, a calendar for appointments, and the ability to house personal and medical information in a user-profile. When reflecting on the addition of a user profile that included personal and medical history, Tabitha, a 37-year-old White woman with an intellectual disability, considered how this feature could benefit her since her mom lives in a different state sharing,This is really cool because like, I'm not the type of person to actually keep this all in my head. I mean my mom can do it, but this would be really good. Next time she's around, I can have this up and have her put in all the information...that way I could just use the app and whatever is required of me.</p> <p>Some participants also reported that the app should include software that suggests potential accommodations an individual may need before (e.g., details of what to expect at the appointment, appointment materials available before the appointment), during (e.g., healthcare staff available to support paperwork, lights dimmed or off), or after a healthcare service (e.g., after appointment summaries provided in plain language, healthcare staff provide support to lobby or parking lot). Jordyn shared her need for specific accommodations when seeing a provider: "[I need] an easy-to-read summary after my doctor's visit because I deal with a lot of auditory processing issues, I would also love to see, um, doctors be able to talk slower." Michael, a 41-year-old from a southwestern state and a self-advocate, shared that he knew individuals with sensory needs that may benefit from waiting in the parking lot rather than in the waiting room. Michael stated, "The meet in the parking lot one sounds good especially if someone has anxiety about a certain type of medical procedure or something they haven't seen before...I think that's a really nice one to add, to have in there." Upon thinking of all the potential accommodations, Abby suggested organizing the list of accommodations chronologically (i.e., before, during, and after the appointment). Abby stated, "As I'm getting ready for an appointment, I am walking through the steps of preparing to go to the appointment, so my mind is kind of walking through what I will need."</p> <p>Some participants also suggested adding a resources tab to the app. Timothy shared, "I've seen guides for autistic people to healthcare. Maybe linking to some of those would be helpful... like how to ask for accommodations at the doctor, bringing a care person...like those kinds of more general autism and healthcare resources." Abby shared about the benefit of having visual and auditory explanations of healthcare providers. Abby stated, "Not only benefit, but a necessity of having a video rather than just a definition of things because of the importance of multimodality input. If you just put a definition of what something is, people may have trouble with reading comprehension." Michael reported excitement about adding a resources tab. He suggested the tab could include, "education disability resource centers," "state developmental disability councils," and "centers for independent living." Additional recommendations for the resources included: disability organizations that provide healthcare, phone numbers for crises and emergencies, healthcare advocacy tips, healthcare social stories, tips about the frequency they should see healthcare providers, legal services, mental health resources, a list of neurodivergent providers, reproductive and sexual health, transportation tools, and ideas of what users may need to bring to appointments.</p> <hd id="AN0191658798-21">Perceptions of the most Valuable Aspect of the App</hd> <p>Participants found the most valuable aspects of the app were: serving as a central location for all information; suggesting potential accommodations; having resources; reflecting accessibility; and being searchable by filters. Six participants reported that the most valuable feature of the app was having everything all in one place. Timothy shared, "The idea that it's all together, I feel like is the most important part. Everything in one place takes the anxiety away from trying to figure out how to find a provider...I wish I had this [the app] right now." A third of participants (<emph>n</emph> = 5) reported that the software features, such as the accommodations within the user profile, were the most valuable aspect of the app. Katrina found great value in the accommodations and how they could be easily accessible during appointments. She shared, "I like having this on an app [accommodations] that you can come in or tell the people in advance that I'll need these accommodations. This will be helpful." Four participants shared that the resource tab was the most beneficial as it educated users about supports and services. Lawrence reported, "I think a resource tab is very beneficial, a lot of people may not know there are resources out there that they can access. Knowledge is power... I think that enlightens them [users] and gives them wisdom." Three participants reported that software features were the most valuable. Shane shared, "This feature would keep me informed and on track with my appointments. I feel that would really come in handy a majority of the time." Three participants reported that the filters were the most valuable. Vance shared, "I'd say the thing I love the most is that you can filter by all these different, specific needs and you can add in accommodations. Like that combination is very holistic." Overall, participants valued a variety of different aspects and features of the app as they worked individually and collectively to facilitate access and knowledge related to healthcare services. When Tabitha was asked what the most valuable part of the app was, she simply exclaimed, "Yes! Yes to all of it!" See Fig. 2.</p> <p>Graph: Fig. 2 Most valuable features in the app</p> <hd id="AN0191658798-22">Discussion</hd> <p>Autistic adults face greater barriers in accessing healthcare services. To help improve access to services, we sought feedback from autistic adults about a healthcare app. By including the perspectives of end users (i.e., autistic adults) as the app is developed, we can help ensure its success in the real world (Mohr et al., [<reflink idref="bib30" id="ref60">30</reflink>]). Altogether, this study had two main findings. First, some of the suggestions from autistic adults would benefit everyone (regardless of whether they have autism). This finding aligns with extant research suggesting that universal design benefits everyone (Rose, [<reflink idref="bib38" id="ref61">38</reflink>]). Specifically, our findings about the importance of having filters related to geographic location (Li et al., [<reflink idref="bib27" id="ref62">27</reflink>]) and type of payment for services (O'Connor, [<reflink idref="bib33" id="ref63">33</reflink>]) are generalizable to the general population who also consider location and payment as important determinants of healthcare service access. Similar to curb cuts and other accessibility design features, they often benefit everyone, disability or not (Charlton, [<reflink idref="bib9" id="ref64">9</reflink>]).</p> <p>However, there were specific features and filters that may be especially relevant for autistic adults. Such features and filters included having a neurodiversity-friendly provider, a list of potential accommodations, and healthcare services that may be more commonly needed among autistic adults. This finding underscores that eliciting feedback directly from the intended user of the app (i.e., autistic adults) is useful as, without their feedback, the app may not be customized to meet their needs. This finding should be considered in light of other findings that, while some unique features may be needed, autistic adults reported wanting and valuing an app to assist them in accessing healthcare services. Thus, this study extends current research (Haoues & Mokni, [<reflink idref="bib16" id="ref65">16</reflink>]) suggesting that apps may be useful for autistic adults in accessing services.</p> <p>Second, there is a need to consider balancing different perspectives in relation to types of services. The most controversial service (ABA) was debated among the sample with some participants wanting to: keep it, revise it, or remove it, respectively. Recent research has similarly found that some autistic adults consider ABA as harmful and unnecessary (Anderson, [<reflink idref="bib2" id="ref66">2</reflink>]). In response, the ABA community needs to listen and reconcile their beliefs with the voices of autistic individuals (Veneziano & Shea, [<reflink idref="bib46" id="ref67">46</reflink>]). As suggested by some participants, there may be a middle ground by revising the description of ABA to include context about its use and history. However, future research should explore the perspectives of autistic adults about whether such a description ameliorates their concerns.</p> <p>The finding about services is not limited to ABA—there are other concerns surrounding whether to include different services in a healthcare services app. Put simply, this study raises questions such as: What is a healthcare service? And does the service need to reflect evidence-based practice? Participants suggested some commonly used healthcare services (e.g., ENT doctor, psychologist). Such services may easily be characterized as healthcare. However, there were suggestions for other services such as transportation, case management, and education disability resource centers. Although such supports may facilitate access to healthcare services, they may not be services themselves. Other suggested healthcare services lack research documenting their effectiveness among autistic adults (e.g., light therapy, Rolfing, reiki). The absence of evidence of effectiveness does not make a service ineffective; however, it is unclear whether such untested services should be included in an app as they may be ineffective (or even harmful) for individuals.</p> <hd id="AN0191658798-23">Limitations</hd> <p>Although an important jumping off point, this study has a few limitations. First, participants did not actually use the app; they only viewed prototypes. Other feedback may materialize upon actually using the app. In addition, there may be specific challenges to aggregating healthcare information across all providers without contextualizing the legal and fiscal challenges that are likely associate with this aggregation. Despite these challenges, these findings contribute to what autistic adults are seeking or would find beneficial when accessing healthcare services. Second, the sample was homogenous with respect to whether individuals also had an intellectual disability. By not reflecting the entire spectrum of autism, the transferability of findings may be limited. In addition, there may be limited transferability of the findings due to limited diversity of our sample across race and education. Our sample was mostly White and highly educated, thus there is a need to gain the perspective of those from diverse racial, ethnic, and educational backgrounds. Given that healthcare disparities are more significant for autistic people of color and twice/three times marginalized groups, there are additional healthcare app services, filters, and software features that may be missing that could support these individuals. Third, the interviews were conducted three times within a small window of three months. A longitudinal perspective may help in understanding how an app can be effective across the lifespan.</p> <hd id="AN0191658798-24">Implications for Research</hd> <p>Research is needed that meaningfully includes and elicits feedback from autistic adults with significant support needs. To ensure that an app can be accessible across the spectrum of functioning, it is important to elicit feedback from autistic adults with more significant support needs (e.g., an intellectual disability, augmentative and alternative communication users). Due to the extent of support needs among autistic adults with co-occurring intellectual disability, for example, navigating and accessing healthcare services may be even more difficult (Taylor et al., [<reflink idref="bib43" id="ref68">43</reflink>]). Yet, in research about autistic adults most individuals with significant support needs are often excluded. Altogether, research is needed with autistic adults to identify the types and number of features of the app as well as navigation challenges to ensure that apps can be useful across a range of support needs.</p> <p>Future research should consider developing and testing the app with autistic adults. Research has documented that eliciting feedback about an app needs to be done in a variety of ways including actually using the app to inform its full usability (Author, submitted). It may be that, by using the app, the autistic adult will identify additional suggestions to improve its usefulness for the autistic community. In addition, it is critical to develop and test the app with autistic adults of color and from twice/three times marginalized groups to ensure the correct healthcare services and app filters, features, and resources are included (Ames et al., [<reflink idref="bib1" id="ref69">1</reflink>]). Further, given the focus on the ability of an app to improve communication between an autistic adult and the healthcare provider, it may also be useful to test the app with healthcare providers. Given that communication is bidirectional, it may be helpful to have buy-in and input from healthcare providers to ensure they deem the app as helpful and may use it with autistic adults.</p> <p>Finally, it is critical for researchers engaged in autism research to conduct research with and alongside co-researchers with autism. This research was strengthened and elevated by being conducted alongside a researcher with autism. Our participants expressed increased trust and comfort during the interview process given that there was a researcher with autism present that could related to their lived experience. By having a co-researcher with autism on our team, interview protocols and materials were developed that were accessible, reflective, and appealing to our autistic participants. The interview protocol itself evolved to include questions related to self-advocacy and the impact on healthcare access. In addition, our recruitment efforts were not only informed by the experience of our co-researcher, but more accepted and trusted by autism and self-advocacy agencies. When considering data analysis, our discussions were rich and led to informative and reflective conversations about ableism in healthcare access for autistic individuals. By prioritizing meaningful research with and alongside co-researchers with autism at all phases of research, researchers without autism can work to address their own biases and ensure the research being conducted is aligned with the goals and experiences of the autistic community (Nicolaidis et al., [<reflink idref="bib31" id="ref70">31</reflink>]).</p> <hd id="AN0191658798-25">Implications for Practice</hd> <p>Healthcare providers and agencies may consider expanding their mobile healthcare applications or webpages to include additional features beyond test results, messaging a provider, and scheduling appointments. Mobile health applications have been found to enhance information sharing and improve communication and engagement between patients and providers (Qudah & Luetscch, [<reflink idref="bib35" id="ref71">35</reflink>]). While these features were also recognized and valued by participants in this study, they communicated a strong desire for more features that increased access and made navigating healthcare systems easier, such as the ability to list needed accommodations to providers or housing personal and medical histories. Healthcare providers and agencies may leverage their current mobile health applications to include these features which may not only improve healthcare experiences for autistic adults, but also benefit those with and without disabilities.</p> <p>Healthcare providers and agencies may also consider the resources they have available to patients. Many providers have resources that share information about conditions treated, services provided, or what insurance is accepted. While these resources can inform healthcare decisions, they often exclude additional information needed in accessible formats that may be beneficial to autistic adults, such as what to expect or what questions to ask when seeing specific providers, visually-supported materials, or how to advocate for healthcare services (Nicolaidis et al., [<reflink idref="bib31" id="ref72">31</reflink>]). In this study, most participants highlighted the resource tab as a strength and necessity within the app to increase and access healthcare services. In recent years, resources have been developed that seek to empower autistic individuals to access healthcare services such as the Academic Autism Spectrum Partnership in Research and Education (AASPIRE) healthcare toolkit (Nicolaidis et al., [<reflink idref="bib32" id="ref73">32</reflink>]) or hospital initiatives such as the Autism Friendly Initiative at Boston Medical Center or the Autism-Friendly Health System Initiative at Rady Children's Hospital in San Diego. Healthcare providers and agencies can help support autistic patients to access additional information that may be required to make informed decisions by linking these resources to their own webpages.</p> <hd id="AN0191658798-26">Author Contributions</hd> <p>MB and MB conceived and designed the research. MB (first author) conducted the majority to the data collection and writing. MB (First author) coordinated the research team. RL assisted with data collection and analysis and some writing in the manuscript. SD assisted with data collection and analysis and some writing in the manuscript. IB contributed with data analysis and some writing. SR contributed to data analysis and writing in the manuscript. MB (last author) reviewed the manuscript and finalized edits.</p> <hd id="AN0191658798-27">Funding</hd> <p>This project is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under the Autism Intervention Research Network on Physical Health (AIR‐P) grant, UT2MC39440. The information, content and/or conclusions are those of the authors and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.</p> <hd id="AN0191658798-28">Data Availability</hd> <p>The de-identified data are in the process of being uploaded to an online storage platform.</p> <hd id="AN0191658798-29">Declarations</hd> <p>We confirm that all the authors have had material input into the submission. We confirm that, to our knowledge, all the claims, statements and conclusions are true and are our jointly held opinions. We confirm that we all accept the terms of publication of the publisher.</p> <hd id="AN0191658798-30">Conflict of Interest</hd> <p>There were no potential conflicts of interest in this study.</p> <hd id="AN0191658798-31">Ethical Approval</hd> <p>This study was approved by the Institutional Review Board. All procedures were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.</p> <hd id="AN0191658798-32">Informed Consent</hd> <p>Participants provided informed consent for this study.</p> <hd id="AN0191658798-33">Supplementary Information</hd> <p>Below is the link to the electronic supplementary material.</p> <p>Graph: Supplementary file1 (DOCX 20 KB)</p> <hd id="AN0191658798-34">Publisher's Note</hd> <p>Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.</p> <ref id="AN0191658798-35"> <title> References </title> <blist> <bibl id="bib1" idref="ref44" type="bt">1</bibl> <bibtext> Ames JL, Morgan EH, Giwa Onaiwu M, Qian Y, Massolo ML, Croen LA. Racial/ethnic differences in psychiatric and medical diagnoses among autistic adults. 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  Data: Leveraging Feedback from Autistic Adults to Develop an App to Access Healthcare Services
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  Data: <searchLink fieldCode="DE" term="%22Feedback+%28Response%29%22">Feedback (Response)</searchLink><br /><searchLink fieldCode="DE" term="%22Autism+Spectrum+Disorders%22">Autism Spectrum Disorders</searchLink><br /><searchLink fieldCode="DE" term="%22Adults%22">Adults</searchLink><br /><searchLink fieldCode="DE" term="%22Computer+Oriented+Programs%22">Computer Oriented Programs</searchLink><br /><searchLink fieldCode="DE" term="%22Access+to+Health+Care%22">Access to Health Care</searchLink><br /><searchLink fieldCode="DE" term="%22Health+Services%22">Health Services</searchLink><br /><searchLink fieldCode="DE" term="%22Computer+Software%22">Computer Software</searchLink><br /><searchLink fieldCode="DE" term="%22Access+to+Information%22">Access to Information</searchLink><br /><searchLink fieldCode="DE" term="%22Help+Seeking%22">Help Seeking</searchLink>
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  Data: Autistic individuals are more likely to have co-occurring healthcare conditions and experience a cascade of health disparities compared to those that are not autistic. While ample research continues to be conducted to decrease these disparities, it is often done without the input from autistic individuals. In this qualitative study, we interviewed 15 autistic participants to explore how a healthcare services app could be adapted for autistic adults. Overall, participants agreed that a healthcare services app specific to autistic adults could be beneficial. In addition, participants provided feedback on healthcare services, filter options, and software features to include in the app. Participants reported what they found to be most valuable within a healthcare services app prototype designed for autistic adults, such as having all healthcare information in one place, receiving support when seeking accommodations from healthcare providers, and accessing resources. Implications for research and practice are discussed.
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            – Type: issn-print
              Value: 1056-263X
            – Type: issn-electronic
              Value: 1573-3580
          Numbering:
            – Type: volume
              Value: 38
            – Type: issue
              Value: 1
          Titles:
            – TitleFull: Journal of Developmental and Physical Disabilities
              Type: main
ResultId 1