Perceptions of Individuals with Autism Spectrum Disorder on How Health Care Providers Address Sexual Health.

OBJECTIVE: Medical providers report barriers that prevent them from discussing sexual health with patients with autism spectrum disorder (ASD). No investigations have examined the perspectives of adults with ASD about their sexual health care experiences. METHODS: Twenty-five verbal young adults diagnosed with ASD and 40 young adults without ASD participated. An 8-item self-report survey assessed frequency of health care visits, age when sexual health was first discussed, and frequency/content of discussions with providers. RESULTS: The likelihood of discussing sexual health topics did not differ by group, χ2s < 3.25; ps > 0.07, except sexual victimization, which the ASD group reported having discussed less than the non-ASD group (32 vs 9%), χ2 (1, N = 57) = 4.36, p = 0.04. Groups did not differ in their reported comfort level discussing sex/sexual health, having a primary care provider, or frequency of visits. The non-ASD group was significantly more likely to have received sexual health counseling (81%) than ASD group (52%), χ2 (1, N = 58) = 5.33, p = 0.02. Participants in both groups reported having received sexual health information from similar sources except the ASD group was more likely to receive information from parents than the non-ASD group (68% vs 30%), χ2 (1, N = 65) = 8.99, p = 0.003. CONCLUSION: Participants in the ASD and non-ASD groups reported similar comfort levels with sexual health discussions and access to health providers. Yet, the ASD group received less counseling related to sexual health-particularly sexual victimization screening-suggesting that critical information may be missing. Future studies should determine how to help providers overcome barriers to providing young adults with ASD sexual health aligned with their needs.

Centering the Inner Experience of Autism: Development of the Self-Assessment of Autistic Traits.

Current tools for identifying autism are critiqued for their lack of specificity and sensitivity, especially in autistic people who are older, have higher verbal ability or significant compensatory skills, and are not cisgender boys. This may reflect the following: the historical focus of autism research on White (cisgender) male, upper and middle class children; limited interest in the inner, lived experience of autism; and the predominance of a deficit-based model of autism. We report here on the first attempt of which we are aware to develop a clinical self-report measure of autistic traits as described by autistic people. We believe this is an advance in methodology because prior work in the development of autistic trait/diagnostic measures has prioritized the perspectives of nonautistic clinicians and scientists. The measure was developed under the leadership of two autistic researchers and constructed by leveraging descriptions of autism by autistic people to generate items designed to encompass the range of the autistic experience, using strength-based, accessible language. The team utilized iterative feedback from a panel of autistic experts to refine and enhance the measure, called the Self Assessment of Autistic Traits (SAAT). It is intended for people 16 years or older and uses a format that is designed to increase its accessibility and acceptability for autistic respondents. Future work will report on the preliminary psychometrics of the SAAT, with a long-term goal of advancing our understanding of the inner autistic experience and enhancing the clinical and scientific assessment of autism.

Why is this topic important?: Some people, especially older people, and those who can "mask" their autism, are missed by the current autism assessment tools. This can keep them from getting supports or getting connected to autistic communities. This can harm their well-being and independence. The tools we currently have to assess autism are important, but they were not developed with people who represent the full range of genders, ages, abilities, and cultural identities that characterize autism. Furthermore, current tools emphasize behaviors that other people observe, for example, making eye contact, and do not fully explore the lived or inner experience of autism. What is the purpose of this article?: This article describes the first attempt we know of to begin developing a self-report measure of autistic traits as described by autistic people. What did the authors do?: The authors started by reading what autistic people had to say about autism. They used those readings to come up with initial ideas about autistic experience. Then they used those ideas to write questions for a questionnaire about autistic traits. They asked autistic experts to review the questionnaire and made changes based on what they said. How did the authors work together?: This project was led by two autistic researchers who worked with a team of nonautistic researchers experienced in different research methods. A panel of autistic experts, including both autistic scientist and community leaders, also provided important input. Some of those methods were community-based research, Delphi panels, cognitive interviewing, and measure development. The research team made decisions together. The autistic researchers made the final decisions if there was disagreement. What did they produce?: They produced a preliminary version of the Self Assessment of Autistic Traits (SAAT). The SAAT is a questionnaire that asks if a person has common autistic experiences and traits. It has 58 items that are written with the aim of being respectful and using accessible language. The questionnaire is designed to work with common autistic thinking styles. How will this help autistic adults now or in the future?: The long-term goal is to create a reliable and valid self-report questionnaire that people 16 years old and older can complete to measure their autistic traits. We believe that this could be an important tool for advancing our understanding of the inner autistic experience of autism. This could improve how we assess autistic adults and how we research and think about autism.

Meeting the needs of autistic adults in Qatar: Stakeholder perspectives on gaps in services and priorities for future programming.

LAY ABSTRACT: Qatar is expanding the services that it offers for autistic people, but these services focus mainly on diagnosing and treating young children. Because there are not enough autism providers in Qatar and few opportunities for autistic youth to participate in the community, more and more autistic teens and young adults have unmet needs during their transition to adulthood. The goal of this study was to conduct a needs assessment of transition-age autistic youth in Qatar and their families in order to inform the development of an adult respite care and support center. Respite care is a service that provides families with stress relief and time to participate in activities that are more difficult to do when their loved one with a disability is with them. The objective of this study was to use family and stakeholder input to identify the needs and preferences for respite care for autistic youth in Qatar. The project was conducted with a local research team in Qatar and a team of clinical researchers in the United States specializing in autism. Stakeholders, including parents of autistic people and providers working with individuals with autism, completed surveys and participated in focus groups. Families and providers in Qatar were very interested increasing services for young adults with autism to improve quality of life, although wanted to make sure the service providers would be reliable and trustworthy. Implications from this study may substantially improve the lives of autistic adults in Qatar.

Dual Language Learning Predicts Improved Executive Functioning in Youth with Autism.

Previous findings show executive functioning advantages associated with dual language learning (DLL) among neurotypical individuals, yet few studies have investigated these effects in youth with autism spectrum disorder (ASD). The present study investigated effects of DLL and socioeconomic status (SES) on parent-reported executive functioning, verbal ability, and social-emotional functioning using a sample of DLL (n = 53) and monolingual (n = 106) youth with ASD without intellectual disability, matched on gender and full-scale IQ scores. After controlling for the effects of SES, results showed that monolingual youth had better outcomes on verbal ability, while DLL youth had fewer parent-reported problems with executive functioning and unusual behaviors. These findings indicate that bilingualism may mitigate executive functioning deficits in youth with ASD.