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.

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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.

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. Clinical Impact StatementDespite being at higher risk for violence, people with disabilities are often left out of academic conversations around violence, and their experiences and concerns go unheard. To address this, academic researchers partnered with community members with disabilities to create accessible assessments and interventions that addressed the lived experiences of violence in disability Emily M.