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Autistic people experience disparities in employment which may be exacerbated for individuals in skilled employment. Little is known about the experiences of autistic people in skilled employment or how they define success. We used a community-based participatory research approach to conduct a thematic analysis with an inductive approach at a semantic level through a critical realist paradigm. We interviewed 45 autistic people with skilled training, 11 supervisors, and 8 key informants. We purposively sampled to maximize variation. We addressed trustworthiness through multiple coders and peer debriefing. Common themes included high stakes of disclosure, unconventional pathways to careers, disconnects with service and support systems, mental health challenges from trauma/burnout, autistic advantages in the workplace, and complex dimensions of discrimination. Participants defined success as opportunities for growth, work/life balance, financial independence, sense of community, and feeling valued, accepted, and like their work had meaning. Strategies to facilitate success suggested a multi-faceted and wholistic approach including attention to the role of supervisors. Our findings suggest a highly customizable, systems-focused, multifaceted approach to autism employment intervention could be useful in improving skilled employment outcomes. We recommend further work particularly in the areas of disclosure and destigmatizing disability in the workplace.

Background: Adults with intellectual disability experience disparities in social determinants of health and health outcomes. While new knowledge can advance health equity, adults with intellectual disability are frequently excluded from being direct respondents in research. Their inclusion requires addressing scientific and ethical challenges that contribute to their exclusion. Method: We describe our multi-phased process, inclusive of community-engagement, to develop a self-report survey for adults with intellectual disability and share findings from an institutional ethnography conducted to identify strategies for facilitating inclusion. We also assessed indicators of the quality of these strategies. Results: We identified building trust, showing respect, designing in accessibility, maximising flexibility and allowing individualised accommodations as strategies that foster inclusion. Multiple indicators validate the effectiveness of these strategies. Conclusions: Researchers can promote first-person decision-making and direct research participation by focusing on promoting accessibility, trust, respect and engagement.

Background: This study examines recent trends in the age-at-death disparity between adults with and without intellectual and/or developmental disabilities in the United States. Method: Data were from the 2005-2017 U.S. death certificates. Average age at death was compared between adults whose death certificate did or did not report an intellectual and/or developmental disability. Results: Age at death increased minimally for adults without, but markedly for adults with intellectual and/or developmental disabilities. As a result, the age-at-death disparity decreased: 2.2 years between adults with/without intellectual disability; 1.9 years between adults with/without Down syndrome; 2.7 years between adults with/without cerebral palsy; and 5.1 years between adults with/without rare developmental disabilities. Conclusion: Evidence from this study demonstrates that the age-at-death disparity between adults who did or did not have an intellectual and/or developmental disability reported on their death certificate continues to decrease, but the magnitude of the remaining disparity varied considerably by type of disability.

Background: Young adults with intellectual/developmental disabilities and co-occurring mental health conditions (IDD-MH) experience significant mental health disparities. Barriers to services include transportation and stigma associated with services. Peer mentoring (PM) may be one solution to these barriers. Methods: We conducted exploratory research to develop a PM intervention for young adults with IDD-MH by partnering with 3 young adults with IDD-MH and a seven-member advisory board. In addition, we conducted focus groups with mental health clinicians (n = 10), peer providers (n = 9), and transition specialists (n = 20) to identify the desired PM outcomes and features and content that may facilitate these outcomes. Results: Prioritized outcome: identifying and utilizing leisure activities as coping strategies. PM features: mentors should use relationship- and outcome-driven actions to operationalize a mentee-centred approach. Features and content considerations: safety, mentor matching, degree of structure, mentor training and support, and collaboration with mentees' support teams. Discussion: Findings are aligned with previous research on PM. [This article was co-authored by the Young Adult Mental Health/Peer Mentoring Research Team.]

People with intellectual disability experience disproportionately high rates of interpersonal violence (IPV) due, in part, to disability-related risks that often can be minimized through targeted intervention. In this article, we describe using an academic and community participatory research approach to develop and test the feasibility of an accessible IPV prevention program for people with intellectual disability. "The Safety Class," which is an interactive, structured, eight-session, weekly face-to-face group program, was found feasible for implementation in an efficacy study. Working in partnership with the intellectual disability community through all phases of the project helps ensure the relevance, inclusion, and accessibility of "The Safety Class."

Using a participatory research approach, we enlisted 12 U.S. Centers for Independent Living (CILs) to recruit and enroll 170 adults with intellectual disability (ID) to be randomized to either "The Safety Class," an abuse prevention group program, or usual care. Participants were asked to complete pre, post, and 3-month follow-up questionnaires. CIL staff members facilitated the eight-session, interactive program. Quantitative and qualitative findings suggest that participation in a brief safety program may improve safety protective factors among men and women with ID. "The Safety Class" serves as one model for delivering an abuse prevention and education intervention to adults with significant safety needs but extremely limited access to relevant community resources. [Co-written with the Safety Project Consortium.]

Our objective was to use a community-based participatory research approach to identify and compare barriers to healthcare experienced by autistic adults and adults with and without other disabilities. To do so, we developed a Long- and Short-Form instrument to assess barriers in clinical and research settings. Using the Barriers to Healthcare Checklist--Long Form, we surveyed 437 participants (209 autistic, 55 non-autistic with disabilities, and 173 non-autistic without disabilities). Autistic participants selected different and greater barriers to healthcare, particularly in areas related to emotional regulation, patient-provider communication, sensory sensitivity, and healthcare navigation. Top barriers were fear or anxiety (35% (n = 74)), not being able to process information fast enough to participate in real-time discussions about healthcare (32% (n = 67)), concern about cost (30% (n = 62)), facilities causing sensory issues (30% (n = 62)), and difficulty communicating with providers (29% (n = 61)). The Long Form instrument exhibited good content and construct validity. The items combined to create the Short Form had predominantly high levels of correlation (range 0.2-0.8, p < 0.001) and showed responsiveness to change. We recommend healthcare providers, clinics, and others working in healthcare settings to be aware of these barriers, and urge more intervention research to explore means for removing them.

Scientific advances can improve the lives of adults with intellectual disability, yet concerns that research participation may impose harm impede scientific progress. What counts as harmful can be subjective and perceptions of harm may vary among stakeholders. We studied perspectives on the harmfulness of research events among adults with intellectual disability, family members and friends, disability service providers, researchers, and Institutional Review Board members. We found considerable variance. For example, adults with intellectual disability see exclusion from research as more harmful, but most psychosocial harms as less significant than others. All stakeholders agree that having someone else make the participation decision is harmful. Findings provide insights into the concept of harm and ethical research with adults with intellectual disability. [This article was written with The Project ETHICS Expert Panel, which includes: Anna Carroll, Marty Cuddy, Micah Fialka-Feldman, Dan Flanigan, Pat Fratangelo, Lance Gonzalez, Michael Kennedy, Kathleen King, Chris Mansfield, Deb McGowan, Rachel Romer, Margaret Turk, Shquria Velez, Pamela Walker, and Priscilla Worral.]

The article focuses on the challenges of equity in precision medicine research (PMR), specifically analyzing the Genomics England's 100KGP and the All of Us Research Program. It explores exclusionary factors both upstream and downstream, emphasizing the risk of exacerbating health disparities, and highlights the often-overlooked population of people with disabilities in PMR, addressing issues related to disability and intersectionality.

Including adults with intellectual disability in research promotes direct benefits to participants and larger societal benefits. Stakeholders may have different views of what count as benefits and their importance. We compared views on benefits in research with adults with intellectual disability among adults with intellectual disability, family and friends, service providers, researchers, and institutional review board members. We found that adults with intellectual disability value direct and indirect research benefits, and want to participate in research that offers them. Other stakeholders generally see less value in direct benefits and predict more tempered interest in research participation as compared to adults with intellectual disability. To promote respectful research participation, research policy and practice should incorporate the views of adults with intellectual disability. [This article was written with "Project ETHICS" Expert Panel, which includes Anna Carroll, Marty Cuddy, Micah Fialka-Feldman, Dan Flanigan, Pat Fratangelo, Lance Gonzalez, Michael Kennedy, Kathleen King, Chris Mansfield, Deb McGowan, Rachel Romer, Margaret Turk, Shquria Velez, Pamela Walker, and Priscilla Worral.]

Our objective was to obtain an in-depth understanding of autistic adults' experiences with healthcare and their recommendations for improving care. Our academic-community partnership used a community-based participatory research approach to conduct semi-structured, open-ended interviews with 39 autistic adults and 16 people who had experience supporting autistic adults in healthcare settings. Participants identified patient-level, autism-related factors that impact healthcare interactions, including verbal communication skills, sensory sensitivities, challenges with body awareness, slow processing speed, atypical non-verbal communication, and challenges with organization. However, the success of healthcare interactions largely depended on the interplay between patient- and provider-level factors, as well as the larger context in which patients were receiving care. Provider-level factors included providers' knowledge about autism in adults, incorrect assumptions about individual patients, willingness to allow written communication, use of accessible language, openness to providing other accommodations, and skill in appropriately incorporating supporters. System-level factors included the availability of supporters, complexity of the healthcare system, accessibility of healthcare facilities, and stigma about autism. Further efforts are needed to empower patients, adequately train providers, increase the accessibility of the healthcare system, and decrease discrimination.

People living with physical, sensory, intellectual, and/or developmental disabilities experience complex social, environmental, political, and cultural challenges along with stigma and marginalization in education, employment, and community life. These multiple and complex barriers often hinder their full and effective participation in society. In this reflection, we curated articles on physical, sensory, intellectual, and/or developmental disabilities published in the American Journal of Community Psychology from 1973 to 2022. We reviewed titles and abstracts to identify themes that grouped manuscripts in relevant community psychology core concepts and values. From our analysis, five themes emerged: (a) promoting empowerment and advocacy; (b) promoting organizations and settings that support people with disabilities; (c) including people with disabilities in knowledge production; (d) promoting social justice in disability research, and (e) promoting support networks of families of people with disabilities. We conclude this reflection with a discussion of recommendations for future research, practice, and a call to action. Highlights: Community psychologists have made important contributions to the study of disability.Disability research in AJCP has emphasized core community psychology perspectives and values.Future research needs to elevate the voices of people with disabilities, their lives, experiences, and perspectives. [ABSTRACT FROM AUTHOR]

Provoked by decades of grassroots activism, anti-ableist work is underway to advance disability rights. Intellectual disability (ID) researchers can integrate these social changes into their work by interrogating and transforming the beliefs and practices that underpin ID research. We share actionable ideas to foster anti-ableism and allyship in ID research. These include: (1) Learn from and nurture long-term, mutual relationships with people with ID; (2) Amplify the voices of people with ID in institutional structures that influence research; (3) Infuse anti-ableist frameworks into our own research; and (4) Embody a career-long commitment to disability rights, reflexive practice, and growth. [ABSTRACT FROM AUTHOR]

The acceptance and inclusion of persons with intellectual disability can vary across cultures, and understanding attitudes can provide insight into such variation. To our knowledge, no previous study has explored attitudes toward people with intellectual disability among Pakistani community members and disability service providers. We administered the Community Living Attitudes Scale (Henry et al., 1996), a measure of attitudes toward people with intellectual disability developed in the United States, to 262 community members and 190 disability service providers in Pakistan. Confirmatory factor analysis found a 4-factor solution (empowerment, similarity, exclusion, and sheltering) fit the Pakistani sample. More positive attitudes were observed in staff serving people with intellectual disability, females, Christians, Hindus, Sunnis, and people with greater education. We discuss implications for research, theory, and practice.

There are important benefits to including adults with intellectual disabilities in research. Calls for their increased participation in research co-occur with notable discussion about how to conduct ethically strong research with adults with intellectual disabilities, a population widely considered vulnerable in the context of research. The authors systematically researched the peer-reviewed literature on ethical practices in research with adults with intellectual disabilities to identify and analyze conceptually and empirically supported ethical approaches to research in the area of research with adults with intellectual disabilities. They conducted a thematic analysis of the 37 articles that met inclusion criteria. They identified three overarching themes: (1) guiding frameworks and approaches; (2) strategies to promote accountability to ethics; and (3) making decisions about participation, including considerations for coercion, capacity to consent, surrogate decision-making, and promoting understanding. From the review, they noted diverse recommendations for ethical research practices, characterized by a lack of consensus, entrenched tensions in value orientations, and gaps in knowledge and practice. Attention to promising strands of scholarship that emphasize attention to strengths, autonomy, dignity of risk, and a contextually based framing of consent capacity may be particularly fruitful. Similarly, bringing to the forefront the role of accommodations in promoting participation, systematically studying diverse ethical aspects of research, and identifying and considering the perspectives of persons with intellectual disabilities may represent critical next steps. They suggest that research collaborations between academics and persons with intellectual disabilities present opportunities to further strengthen the ethical integrity of research in the field.

Social and cognitive characteristics of adults with intellectual disabilities (ID) place them at risk for inappropriate inclusion in or exclusion from research participation. As we grapple with how to include adults with ID in research in order to secure their right to contribute to scientific advancements and be positioned to derive benefit from ensuing knowledge, it is critical to consider scientific gatekeepers' perspectives on risks of and protections for including adults with ID in research. We surveyed 199 Institutional Review Board members and intellectual disability researchers in the United States to identify their perceptions of specific risks and necessary protections in (hypothetical) research studies. The research studies varied as to whether they included adults with ID in the research sample and the level of harm to which research participants were exposed. Results suggest that identification of psychological, social, and legal risks and necessary protections varied by the disability status of the sample, the level of risk, and the role of the person reviewing the study. For example, participants identified more psychological, information control, legal, and social risks in higher harm research studies. Participants reported a need for more protections in high-harm studies as well as studies that included adults with ID. In some instances the nature of identified risks and protections and respondents' characterization of these risks and necessary protections suggested concerns related specifically to adults with ID. Implications for practice, policy, and future research related to access to research participation are discussed.

Researchers and Institutional Review Board (IRB) members' attitudes influence scientific knowledge about individuals with intellectual disability. We recruited 260 intellectual disability researchers and IRB members to develop a measure of attitudes toward the research participation of adults with intellectual disability, the Participation in Research Attitude Scale. Findings suggest three conceptual domains: Opportunity and Choice, Help in Decision Making, and Beneficence. We also examined individual differences in attitudes and the relationships between general and specific attitudes. In general, intellectual disability researchers and those with closer relationships to individuals with disabilities had attitudes consistent with disability-rights principles. Some dimensions of global attitudes toward adults with intellectual disability predicted more specific attitudes toward their research participation. Implications are discussed.

The client of a student evaluation team has requested that the evaluators provide confidential identifying information gathered in the course of the evaluation. Here, the authors consider their response to the client's request. Specifically, they draw from professional principles developed to guide ethical decision making for evaluators and educators to consider the advantages and disadvantages of denying or meeting this request from a variety of stakeholder perspectives. The authors then use this stakeholder analysis to engage in imaginative thinking about the possible responses from which the student evaluation team can select. They conclude with a review of lessons learned from this challenging situation. (Contains 1 table.)

This article considers key ethical, legal, and medical dilemmas arising for people with disabilities in the COVID-19 pandemic. We highlight the limited application of existing frameworks of emergency planning with and for people with disabilities in the COVID-19 pandemic, explore key concerns and issues affecting the health care of people with disabilities (i.e., access to information and clinician–patient communication, nondiscrimination and reasonable accommodations, and rationing of medical goods), and indicate possible solutions. Finally, we suggest clinical and public health policy measures to ensure that people with disabilities are included in the planning of future pandemic-related efforts. The devastation evoked by the COVID-19 pandemic raises challenging dilemmas in bioethics. It also speaks to social justice issues that have plagued historically marginalized communities in the United States. Responses to the pandemic must be bound by legal standards, principles of distributive justice, and societal norms of protecting vulnerable populations—core commitments of public health—to ensure that inequities are not exacerbated, and should provide a pathway for improvements to ensure equitable access and treatment in the future. [ABSTRACT FROM AUTHOR]

Importance: A key objective of the Americans With Disabilities Act of 1990 (ADA) is community integration; yet, nearly 30 yr later, little is known about the participation of people with disabilities who transition from institutions to the community. Objective: To understand how people with disabilities describe full participation after transitioning from an institution to the community and to identify environmental barriers and facilitators to participation during and after this transition. Design: The ADA–Participatory Action Research Consortium (ADA–PARC), a collaboration among researchers, people with disabilities, and community organizations, is implementing a multimethod, participatory action research study of participation among people with disabilities posttransition. This article presents qualitative findings from semistructured interviews collected as part of the larger ADA–PARC project. Setting: ADA–PARC community partners across the United States. Participants: One hundred fifty-three adults with disabilities. Outcomes and Measures: We used a semistructured interview guide to ask participants about their experiences during and after transition to the community. Results: We identified four themes: (1) the process of transition as ongoing rather than a single event, (2) access to everyday occupations as full participation and what fully represents "living a life," (3) environmental barriers to participation, and (4) social identity as participation as the transformative process of moving from the disempowering isolation of the institution to being integrated into the community. Conclusions and Relevance: As people with disabilities transition into community settings, they require ongoing supports to facilitate their full, long-term participation. What This Article Adds: People with disabilities reported that transitioning from institutions to the community was itself not enough to support their full community participation; rather, they viewed transition as an ongoing process, and they needed services and supports to fully participate. Occupational therapy practitioners working in institutional and community settings can partner with local disability advocacy communities to support their clients' sense of identity and self-confidence during and after transition to the community. [ABSTRACT FROM AUTHOR]

The authors talk about the injustice toward people with disabilities in the COVID-19 pandemic. Topics include the most relevant and unique disadvantages that people with disabilities experience in health care and community living that place them at risk for disparate COVID-19 outcome, the need to ensure accurate data collection to better understand COVID-19 disparities, and the need to address concerns on the way intellectual/development disabilities (IDD) is reported on death certificates.

People with intellectual disability (ID) are increasingly involved in stakeholder-engaged research, such as "inclusive research" (IR). To understand the processes that foster and maintain IR with individuals with ID, we used a narrative interview approach with co-researchers with ID (n = 6) and academic researchers (n = 8). We analyzed the data using grounded theory principles. We then developed a model describing how contextual factors and team-level factors and processes coalesce to foster and maintain IR collaborations. We observed that team members' values and characteristics are foundational to IR and drive a commitment to accessibility. Contextual factors, including funding and partnership duration, influence teams' processes and structures. These processes and structures influence the extent to which co-researchers perceive the IR team to be cofacilitated or academic-facilitated. Co-researcher involvement is partially maintained by perceived personal and societal benefits. Optimizing the relationship between these factors may support involvement of people with ID in stakeholder-engaged research projects. [ABSTRACT FROM AUTHOR]

Despite the major advances achieved following the passage of the Americans With Disabilities Act, people with disabilities face persistent inequality and disparities in community living, community participation, and work and economic participation. Work in other areas is advancing frameworks that emphasize environmental determinants of key outcomes and using geographic information and data visualization to induce change. The Americans With Disabilities Act Participatory Action Research Consortium draws from these approaches to study trends in community living, community participation, and work and economic participation using participatory action research, and to help ADA centers and community stakeholders target disparities and increase full participation of people with disabilities, including those with developmental disabilities, in their communities. [ABSTRACT FROM AUTHOR]

Faith communities create community and are important to many individuals with intellectual disability. However, relatively little is known about how intellectual disability is construed among faith leaders and the inclusion of people with intellectual disability in faith communities. To address these gaps in knowledge, we interviewed 12 Catholic priests, parochial vicars, and deacons to explore: their experiences with individuals with intellectual disability; their beliefs towards the involvement of individuals with intellectual disability within faith communities; and how religion informs their understanding of intellectual disability. We identified five religiously-anchored narratives of intellectual disability, and explore implications for individuals with intellectual disability and faith communities. [ABSTRACT FROM PUBLISHER]

Although civil rights legislation designed to remove barriers to and promote full and equal participation in communities has led to some improvements, barriers remain. These barriers create participation disparities among people with disabilities, which in turn contribute to feelings of isolation and poorer health. We used participatory action research to understand present-day accessibility of important and understudied community settings, namely, state and local government facilities, programs, and services. Using an innovative approach to examining accessibility, we were able to compare the experiences of researchers with and without disabilities, thereby allowing us to identify disparities between the two groups. We found that some progress in providing access has been achieved but that other barriers persist; access for individuals with vision-related disabilities may be most problematic. Findings indicate that more needs to be done to achieve full accessibility and inclusion. [ABSTRACT FROM AUTHOR]

Social, scientific, and ethical factors underscore the value of respectfully including people with intellectual/developmental disabilities in research despite significant barriers to their research participation. In pursuit of this goal, we worked with two research advisors with intellectual/developmental disabilities to develop a qualitative study toolkit emphasizing accessibility, flexibility, variety, and responsiveness. The toolkit includes procedures and materials for recruitment, consent, interview locations and questions, breaks, and incentives. We recommend that future research utilizes insights of individuals with intellectual/developmental disabilities in research that impacts their lives, and that researchers systematically improve the use of procedures and toolkits. [ABSTRACT FROM AUTHOR]

Action research-research collaborations between professional researchers and community members to address community concerns-has become increasingly popular in developmental disability research. Advocates of these approaches argue that they reflect the value of including people with disabilities in matters that affect them and generate benefits for people with disabilities and for research. However, it is not clear how well action research with adults with developmental disabilities reflect core action research principles. The authors identified 21 action research projects with adults with developmental disabilities in English-language referred journals. The authors found that the majority of these projects took place in the UK or the United States, with individuals with intellectual disabilities, were published in or after 2005, and used qualitative methods to examine research aims on social issues important to adults with developmental disabilities. They reviewed common challenges, facilitators, and indicators of success described by authors and found that relatively few projects can be classified as high on the continuum of shared power. Based on these findings, the authors recommended a continued focus on the accurate understanding and application of action research models, building our knowledge of and evidence base for effective tools, strategies, resources, and personal characteristics for action research with adults with developmental disabilities, adequately funding this research, and pursuing a broader array of research methods. The projects studied herein provide evidence for the promise and possibility of action research with adults with developmental disabilities. [ABSTRACT FROM AUTHOR]

The article describes the practice of state attorneys general hiring of outside counsel in Arkansas and examines the merits and demerits of permitting states to use contingency-fee arrangements with outside counsel. It discusses section 25-16-702 of the Arkansas Code that provides the Attorney General with the power to hire outside counsel to represent the State and reflects that the section must be amended to create greater transparency in selecting firms to represent the State.

L'Arche communities offer faith-centered, shared community living for individuals with and without intellectual disabilities. L'Arche communities focus primarily on deepening social ties for persons with intellectual disabilities in an international context that increasingly focuses on the empowerment of this group. Several theoretical distinctions between sense of community and empowerment point to natural tensions between the two concepts. However, a further analysis uncovers the potential for positive interplay between them. Here, we present a narrative informed by experience that explores the differential effects of a deepened sense of community on empowerment within a faith-centered setting, L'Arche. Implications for creating theory and settings that promote synergy between sense of community and empowerment are discussed. [ABSTRACT FROM PUBLISHER]

Objective: This article describes the use of community-based participatory research (CBPR) to foster bidirectional and equitable academic-community partnerships in two studies related to interpersonal violence and disability., Method: We analyzed our methods and experiences in conducting these studies to focus on the ways in which CBPR methodology was used to jointly promote and enhance research and advocacy surrounding violence and disability in the research processes themselves and the resulting assessment and intervention products., Results: Our use of CBPR methodology allowed us to identify and address critical issues related to violence in the disability community, such as disability-related forms and experiences of violence, concerns and barriers linked to mandated reporting laws, and inaccessible measures and interventions, and to address them in research products. Additionally, our bidirectional academic-community partnerships led us to address overall accessibility of the research process itself as a means by which to amplify advocate voices in science., Conclusions: Full, meaningful, and equitable participation of people with disabilities at every stage of the research process allows for the creation of partnerships that jointly advance research and advocacy around violence and disability. (PsycInfo Database Record (c) 2022 APA, all rights reserved).

Competing Interests: No competing financial interests exist.

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., Competing Interests: No competing financial interests exist., (© Christina Nicolaidis et al., 2020; Published by Mary Ann Liebert, Inc.)

Websites figure predominantly in everyday life. However, many websites remain inaccessible to autistic people, and existing efforts to improve accessibility are in early stages, do not directly include autistic users in their development, or have not been empirically evaluated. The Academic Autism Spectrum Partnership in Research and Education (AASPIRE) used a community-based participatory research approach to create a website to improve health care access for autistic adults. We used the creation of that website as a "living laboratory" to develop the AASPIRE Web Accessibility Guidelines for Autistic Web Users. Our guidelines are grounded in accessibility theory, had autistic end-user involvement at all stages, and were empirically evaluated through a usability study and evaluation surveys. We incorporated what we learned into the design of the website, and compiled the accessibility information into a set of guidelines. The guidelines offer recommendations for increasing the physical, intellectual, and social acceptability of websites for use by autistic adults. In the evaluation of the website by 170 autistic end users, nearly all indicated it was easy to use (97%), easy to understand (95%), important (97%), and useful (96%). Ninety-two percent would recommend it to a friend, and 95% would recommend it to a health care provider. There were no significant associations between usability or understandability and education level, receipt of help using the site, browser type (e.g., IE or Safari), or device type (e.g., PC or tablet). We recommend using the guidelines to improve website accessibility for autistic Internet users., Lay Summary: AASPIRE Web Accessibility Guideline: This guideline is a summary of the accessibility features we identified and implemented during the course of our study. None of these items were difficult or expensive for us to implement. They did not require special expertise beyond basic web programming and technical communications skills. We recommend that anyone seeking to create accessible websites for autistic users follow the Academic Autism Spectrum Partnership in Research and Education (AASPIRE) Web Accessibility Guideline in addition to broader web and communications standards and principles.Physical accessibility:Provide at least one low-contrast neutral color palette option to accommodate sensitive vision.Provide a selection of color palettes, including one with a dark background and one with a light background, again to accommodate color and contrast sensitivity.Provide a no-style option (i.e., no cascading style sheets (CSS) to accommodate browser customization and users who prefer no stylistic formatting.Provide simple consistent navigation and highly consistent site behavior for increased ease of operation.Avoid textured backgrounds, moving images, decorative elements that do not convey information, and other visual and/or sonic "clutter"; these types of elements may make the site difficult or impossible to comprehend.Provide smaller font sizes in addition to larger ones; large font sizes may make the page appear cluttered and difficult to read.Use a plain accessible sans-serif font (e.g., Arial) for ease of readability.Intellectual accessibility:Use the simplest interface possible for ease of understanding.Use simple concrete icons or images to communicate redundant information with text, and accommodate multiple ways of understanding information.Clearly label site elements with their purpose everywhere on the site, even if it seems redundant, to make navigation and site functionality easier to follow.Provide concrete examples where applicable to accommodate difficulties in understanding abstractions or generalizations.Minimize scrolling so the user does not need to rely on assumptions about content to guess what might be on the page.Show all important features and site navigation (as opposed to within combo box drop-down areas) so the user does not need to rely on assumptions to guess whether the item exists and how to access it. For example, completely visible list boxes or radio buttons can be used instead of combo boxes.Make content as short as possible without sacrificing precision and specificity, to reduce cognitive burden.Social accessibility:Be specific and precise in language use; avoid colloquialisms, idioms, and ambiguity to accommodate difficulties with language pragmatics.Explain the reason behind any nonstandard instructions or unusual information; provide additional pragmatic context to accommodate difficulties with language pragmatics.Provide alternatives to definitive response items on surveys and forms, for example, "do not know," "do not wish to say," or "not applicable," to reduce frustration for not being able to produce an exact answer.Use FAQ formats to organize complex information to enhance clarity as to why the information might be useful to the user and how it connects to their life.Define terms that might have different meanings depending on social context, or which might be jargon related to a specialized field (e.g., "drug interactions" and "health care providers"), to accommodate difficulties with language pragmatics.Be mindful of autistic culture and community preferences, including the language used to describe autism and how community-based symbols and history might influence content and perception of site credibility., Competing Interests: No competing financial interests exist., (Copyright 2019, Mary Ann Liebert, Inc., publishers.)

Background: Attitudes toward the research participation of adults with intellectual disability inform research policy and practice, impact interest in and support for research participation, and promote or discourage the generation of new knowledge to promote health among adults with intellectual disability. Yet we know little about these beliefs among the public and the scientific community., Objective/hypothesis: We quantitatively studied attitudes among adults with intellectual disability, family and friends, disability service providers, researchers, and Institutional Review Board (IRB) members. We predicted that adults with intellectual disability, and researchers would espouse views most consistent with disability rights, whereas IRB members, and to a lesser degree family, friends, and service providers, would espouse more protective views., Methods: We surveyed five hundred and twelve members of the five participant stakeholder groups on their attitudes toward the research participation of adults with intellectual disability., Results: We found broad support for research about people with intellectual disability, though slightly more tempered support for their direct participation therein. In general, IRB members and to some extent adults with intellectual disability endorsed direct participation less than others. We also found that adults with intellectual disability strongly believed in their consent capacity., Conclusions: Resources should be directed toward health-related research with adults with intellectual disability, and interventions should be pursued to address ethical challenges and promote beliefs consistent with human rights., (Copyright © 2017 Elsevier Inc. All rights reserved.)