The relation of abuse to physical and psychological health in adults with developmental disabilities.

BACKGROUND: People with developmental disabilities are at disproportionately high risk of abuse. Although considerable evidence exists on the health-related consequences of abuse in the general population, little is known about those consequences in people with developmental disabilities. OBJECTIVE: To examine the relation of abuse with psychological and physical health outcomes in adults with developmental disabilities. METHODS: We used an accessible audio computer-assisted self-interview to collect anonymous data on demographic and disability characteristics, childhood and adult abuse experiences, and physical and psychological health from 350 women and men with developmental disabilities. Abuse experience was reflected by five factor scores consisting of three child abuse factors (childhood sexual abuse, childhood physical abuse, childhood disability-related abuse) and two adult abuse factors (adult sexual abuse, adult mixed abuse). We examined each of four health outcomes (depression, post trraumatic stress disorder, physical health symptoms, secondary health conditions) separately to determine the extent to which childhood and adult abuse experiences uniquely predicted psychological and physical health outcomes above and beyond demographic and disability-related characteristics. RESULTS: All five abuse factor scores were significantly related to all four health outcomes. When examined simultaneously, childhood disability-related abuse and adult mixed abuse accounted for unique variance in outcomes. Exploratory analyses revealed no difference in the impact of abuse by gender. CONCLUSIONS: In this study, childhood disability-related abuse and adult mixed abuse significantly predicted lower levels of psychological and physical health in a sample of adults with developmental disabilities. Our findings highlight the importance of addressing abuse and its sequalae in the developmental disabilities community.

Development of the AASPIRE Web Accessibility Guidelines for Autistic Web Users.

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.

Barriers to healthcare: Instrument development and comparison between autistic adults and adults with and without other disabilities.

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.

The Role of Gender in Violence Experienced by Adults With Developmental Disabilities.

Violence against people with developmental disabilities is a highly prevalent yet understudied phenomenon. In particular, there is a paucity of literature surrounding the role of gender and the experiences of men. Using a cross-sectional study design, we surveyed 350 people with diverse developmental disabilities about experiences of abuse, perpetrators of abuse, and their physical and mental health status. These data were analyzed to determine whether gender influenced these domains. Statistical methods included chi-square, independent t tests, logistic regression, and hierarchical multiple regressions. Male and female participants reported abuse at high rates, with 61.9% of men and 58.2% of women reporting abuse as children and 63.7% of men and 68.2% of women reporting abuse as adults. More women than men reported adult sexual abuse, but there was no gender difference in the prevalence of any other form of abuse. Women were more likely than men to identify an intimate partner as their abuser, although intimate partners represented the minority of abusers for both men and women. Violence was associated with worse health status regardless of participant gender. These findings confirm that violence is an important issue for both men and women with developmental disabilities. Although some expected gender differences arose, such as higher rates of adult sexual abuse and intimate partner violence against women, these differences were less pronounced than they are in the general population, and the overall picture of abuse was one of gender similarities rather than differences.

The Development and Evaluation of an Online Healthcare Toolkit for Autistic Adults and their Primary Care Providers.

BACKGROUND: The healthcare system is ill-equipped to meet the needs of adults on the autism spectrum. OBJECTIVE: Our goal was to use a community-based participatory research (CBPR) approach to develop and evaluate tools to facilitate the primary healthcare of autistic adults. DESIGN: Toolkit development included cognitive interviewing and test-retest reliability studies. Evaluation consisted of a mixed-methods, single-arm pre/post-intervention comparison. PARTICIPANTS: A total of 259 autistic adults and 51 primary care providers (PCPs) residing in the United States. INTERVENTIONS: The AASPIRE Healthcare toolkit includes the Autism Healthcare Accommodations Tool (AHAT)-a tool that allows patients to create a personalized accommodations report for their PCP-and general healthcare- and autism-related information, worksheets, checklists, and resources for patients and healthcare providers. MAIN MEASURES: Satisfaction with patient-provider communication, healthcare self-efficacy, barriers to healthcare, and satisfaction with the toolkit's usability and utility; responses to open-ended questions. KEY RESULTS: Preliminary testing of the AHAT demonstrated strong content validity and adequate test-retest stability. Almost all patient participants (>94 %) felt that the AHAT and the toolkit were easy to use, important, and useful. In pre/post-intervention comparisons, the mean number of barriers decreased (from 4.07 to 2.82, p < 0.0001), healthcare self-efficacy increased (from 37.9 to 39.4, p = 0.02), and satisfaction with PCP communication improved (from 30.9 to 32.6, p = 0.03). Patients stated that the toolkit helped clarify their needs, enabled them to self-advocate and prepare for visits more effectively, and positively influenced provider behavior. Most of the PCPs surveyed read the AHAT (97 %), rated it as moderately or very useful (82 %), and would recommend it to other patients (87 %). CONCLUSIONS: The CBPR process resulted in a reliable healthcare accommodation tool and a highly accessible healthcare toolkit. Patients and providers indicated that the tools positively impacted healthcare interactions. The toolkit has the potential to reduce barriers to healthcare and improve healthcare self-efficacy and patient-provider communication.

"Respect the way I need to communicate with you": Healthcare experiences of adults on the autism spectrum.

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.

Comparison of healthcare experiences in autistic and non-autistic adults: a cross-sectional online survey facilitated by an academic-community partnership.

BACKGROUND: Little is known about the healthcare experiences of adults on the autism spectrum. Moreover, autistic adults have rarely been included as partners in autism research. OBJECTIVE: To compare the healthcare experiences of autistic and non-autistic adults via an online survey. METHODS: We used a community-based participatory research (CBPR) approach to adapt survey instruments to be accessible to autistic adults and to conduct an online cross-sectional survey. We assessed preliminary psychometric data on the adapted scales. We used multivariate analyses to compare healthcare experiences of autistic and non-autistic participants. RESULTS: Four hundred and thirty-seven participants completed the survey (209 autistic, 228 non-autistic). All adapted scales had good to excellent internal consistency reliability (alpha 0.82-0.92) and strong construct validity. In multivariate analyses, after adjustment for demographic characteristics, health insurance, and overall health status, autistic adults reported lower satisfaction with patient-provider communication (beta coefficient -1.9, CI -2.9 to -0.9), general healthcare self-efficacy (beta coefficient -11.9, CI -14.0 to -8.6), and chronic condition self-efficacy (beta coefficient -4.5, CI -7.5 to -1.6); higher odds of unmet healthcare needs related to physical health (OR 1.9 CI 1.1-3.4), mental health (OR 2.2, CI 1.3-3.7), and prescription medications (OR 2.8, CI 2.2-7.5); lower self-reported rates of tetanus vaccination (OR 0.5, CI 0.3-0.9) and Papanicolaou smears (OR 0.5, CI 0.2-0.9); and greater odds of using the emergency department (OR 2.1, CI 1.8-3.8). CONCLUSION: A CBPR approach may facilitate the inclusion of people with disabilities in research by increasing researchers' ability to create accessible data collection instruments. Autistic adults who use the Internet report experiencing significant healthcare disparities. Efforts are needed to improve the healthcare of autistic individuals, including individuals who may be potentially perceived as having fewer disability-related needs.

Collaboration strategies in nontraditional community-based participatory research partnerships: lessons from an academic−community partnership with autistic self-advocates.

BACKGROUND: Most community-based participatory research (CBPR) projects involve local communities defined by race, ethnicity, geography, or occupation. Autistic self-advocates, a geographically dispersed community defined by disability, experience issues in research similar to those expressed by more traditional minorities. OBJECTIVES: We sought to build an academic-community partnership that uses CBPR to improve the lives of people on the autistic spectrum. METHODS: The Academic Autistic Spectrum Partnership in Research and Education (AASPIRE) includes representatives from academic, self-advocate, family, and professional communities. We are currently conducting several studies about the health care experiences and well-being of autistic adults. LESSONS LEARNED: We have learned a number of strategies that integrate technology and process to successfully equalize power and accommodate diverse communication and collaboration needs. CONCLUSIONS: CBPR can be conducted successfully with autistic self-advocates. Our strategies may be useful to other CBPR partnerships, especially ones that cannot meet in person or that include people with diverse communication needs.