Low-Income Households of Children With Autism and the Economic Safety Net.

OBJECTIVE: This paper examines the distribution, parameters, and determinants of safety net program use among a nationally representative sample of low-income children with autism spectrum disorder (ASD). METHODS: We used data from the 2021 National Survey of Children's Health to produce population estimates of material hardship and safety net program use among 554 low-income households of children with ASD, ages 3 to 17 years, relative to 2831 children with other special health care needs (SHCN) and 8758 children with no SHCN of the same age. Design-adjusted multivariate logistic regression models identified predictors of cash assistance, Supplemental Nutrition Assistance Program, and disconnection from both. RESULTS: There were few significant differences in material hardship between children with ASD and those with other SHCN, although children with ASD experienced significantly higher levels of hardships compared to children with no SHCN. Having a child with ASD did not significantly increase the odds of safety net use. Health insurance and household income were stronger predictors of use than disability. Nine percent of disconnected children lived in households under 100% federal poverty level and experienced some type of material hardship. CONCLUSIONS: Future research about the economic security of children with ASD and their families could focus on the following 3 areas of inquiry: assess how race, ethnicity, or socioeconomic position interact with disability to influence safety net program use; examine the intersection between Medicaid and safety net programs at the state and national levels; and identify specific subgroups of children at risk for disconnection and understand why they are not accessing benefits.

What Category Best Fits: Understanding Transgender Identity in a Survey of Autistic Individuals.

Introduction: Calls for improved measures of gender identity to understand the experience of transgender individuals have grown rapidly in the past 5 years. The need for methodological innovation in this topic area has particular importance for the autistic population since a higher co-occurrence of transgender identities among autistic people has been documented but is not well understood. We use a survey with questions that reflect standards in 2018 to demonstrate how binary conceptualizations of gender did not adequately capture gender identities of transgender autistic individuals. Methods: Using descriptive statistics from a statewide survey of 1527 autistic adults (mean age 27.5 years), this study compared self-reported survey responses to close-ended standard questions at the time about gender identity to understand shortcomings in capturing this population authentically. Results: We found a mismatch between respondents answering that they were transgender, the sex assigned at birth, and gender identity on separate questions. We postulate that transgender men and women were likely selecting binary responses when asked about gender identity. Furthermore, we found that many qualitative responses reported in the self-selected "other" category reflected nonbinary identities and utilized specific terminology that revealed nuance in how they understood gender identities. Conclusions: We urge researchers to provide multiple flexible options when measuring gender identity in autistic populations as they are likely to encompass many identities. We endorse best practices for measuring gender identity for autistic research.

Why is this an important issue?: Autistic people may be more likely to identify as transgender, or a gender identity different from their sex assigned at birth. Transgender autistic people may identify with binary gender identities, as men or women. Some transgender autistic people have nonbinary gender identities or identities that are different from these binary gender identities. If standard measures do not work well for transgender autistic people, their use may result in less accurate research. We present better ways to ask gender identity questions in autism research surveys. What was the purpose of this study?: This study explored how accurately standard questions about sex and gender measure gender identity for transgender autistic people. We looked at how autistic people responded to sex and gender questions in a statewide survey completed in 2018. We suggest improvements in gender identity questions to include diverse gender identities reported by autistic people. What did the researchers do?: We collected 1527 responses from autistic adults using the Pennsylvania Autism Needs Assessment completed in 2018. We examined descriptive statistics for how respondents answered one question about current gender identity, one question about transgender identity, and one question about sex assigned at birth. What were the results of the study?: We found that these three standard questions did not reflect the gender identities of autistic people who took the survey. In response to the transgender identity question, 4% of autistic adults reported that they were transgender or nonbinary. Most (93.9%) of the sample reported binary identities, as male or female. Some autistic adults (2.3%) chose the "other" category on the current gender identity question. They reported a variety of binary gender identities or nonbinary identities. Many autistic adults did not answer questions about sex assigned at birth (26.7%) or transgender identity (27.1%). What do these findings add to what was already known?: We did not know if standard gender identity questions measured transgender identities in autistic people correctly. These findings show that they do not, but also that current measures may not fully address a variety of gender identities, including nonbinary identities. What are potential weaknesses in the study?: We use three survey questions from a survey that had already been used. The measures we used might not have captured how transgender autistic adults see themselves. Autistic adults who had support in completing the survey might have felt pressure from other people, such as caregivers, to answer a certain way. How will these findings help autistic adults now or in the future?: Transgender autistic people have not been studied or supported extensively in the past. Better gender measures could help us learn more about transgender autistic people and possible unmet needs within this population. We suggest best practices that autism researchers can implement in surveys. This will ensure that research more accurately reflects transgender autistic adults' gender identities. Respectful and appropriate methods will improve autism research and translate into better understanding, support, and quality of life for transgender autistic adults.

A Qualitative Study of Self and Caregiver Perspectives on How Autistic Individuals Cope With Trauma.

Background: Coping can moderate the relationship between trauma exposure and trauma symptoms. There are many conceptualisations of coping in the general population, but limited research has considered how autistic individuals cope, despite their above-average rates of traumatic exposure. Objectives: To describe the range of coping strategies autistic individuals use following traumatic events. Methods: Fourteen autistic adults and 15 caregivers of autistic individuals, recruited via stratified purposive sampling, completed semi-structured interviews. Participants were asked to describe how they/their child attempted to cope with events they perceived as traumatic. Using an existing theoretical framework and reflexive thematic analysis, coping strategies were identified, described, and organized into themes. Results: Coping strategies used by autistic individuals could be organized into 3 main themes: (1) Engaging with Trauma, (2) Disengaging from Trauma, and (3) Self-Regulatory Coping. After the three main themes were developed, a fourth integrative theme, Diagnostic Overshadowing, was created to capture participants' reports of the overlap or confusion between coping and autism-related behaviors. Conclusions: Autistic individuals use many strategies to cope with trauma, many of which are traditionally recognized as coping, but some of which may be less easily recognized given their overlap with autism-related behaviors. Findings highlight considerations for conceptualizing coping in autism, including factors influencing how individuals cope with trauma, and how aspects of autism may shape or overlap with coping behavior. Research building on these findings may inform a more nuanced understanding of how autistic people respond to adversity, and how to support coping strategies that promote recovery from trauma.

Vocational Rehabilitation Service Utilization and Employment Outcomes Among Secondary Students on the Autism Spectrum.

U.S. policy interventions encourage earlier provision of Vocational Rehabilitation (VR) services to support students and youth with disabilities such as autism spectrum disorder (ASD) during the transition from school to work. We analyzed Rehabilitation Services Administration (RSA-911) data using multivariable logistic regression to determine the association of VR services receipt with employment outcomes for students ages 16-21, same-age non-student youth and young adults with ASD. Students with autism received job-related services (job search, job placement, and on-the-job supports) at rates significantly below comparison groups, even though odds of successful employment at VR exit were significantly higher if they received these services. Findings suggest that rates of employment among students with autism might be improved with intentional delivery of job-related services.

Prevalence and Correlates of Work Experiences Among High School Students on the Autism Spectrum.

This study used nationally representative data to describe the prevalence and correlates of work experiences among high school students with autism who received special education. Four in tenstudents with autism experienced any type of work (community-based, school-sponsored, paid or unpaid) within a given year-significantly fewer than peers with and without disabilities. Rates of paid work among students with autism were comparable to students with intellectual disability (ID)but half the rate of non-special education peers. Among youth with autism, significant correlates of having work experiences included being white, parent participation in transition planning, and functional skills including navigation. Fostering a variety of early work experiences should be a key goal of disability employment policy at federal and state levels.

Services for Adults With Autism Spectrum Disorder: a Systems Perspective.

PURPOSE OF REVIEW: We review original research about services for adults on the autism spectrum published from January 2013 through December 2018. The main aim is to characterize the topical and methodological aspects of research about services. We review research on services related to employment, living in the community, and social participation. We compare our results with those from a similar review published in 2012 to assess progress and identify where new directions in research about services for adults with autism are needed. RECENT FINDINGS: We found the evidence base about services for adults on the autism spectrum remains very small and highly variable in aims and methods. There is wide variability in methods used to define sampling frames and recruit participants. Most studies focus on employment. Almost no studies examine the overall ecosystem of services serving autistic adults. Few studies use a conceptual framework for understanding access to, or improvement of, services. The small size of the extant research coupled with inconsistent quality prevents the accumulation of new knowledge in ways that would significantly inform the improvement of systems of care for the growing population of adults on the autism spectrum.

Setbacks and Successes: How Young Adults on the Autism Spectrum Seek Friendship.

Objective: To describe the perspectives of young adults on the autism spectrum about how they seek and make friends and explore the diverse ways that some develop satisfying friendships despite social difficulties. Methods: We conducted semistructured interviews with 20 young adults on the autism spectrum about their lives after high school. Although interviews covered a broad range of topics related to transition, the subject of friendship came up frequently throughout the interviews. We extracted data specifically related to friendship for this article and used an inductive approach derived from grounded theory to identify and examine concepts. Results: Participants had the most success in relationships in which their atypical behavior was normalized. Specifically, this occurred among friends who accepted and appreciated their social differences and through common interests where these differences were not a concern. In other relationships, participants felt that they were expected to adhere to social norms, but found it uncomfortable and/or were not sure how to act in some contexts. Therefore, finding friends who did not expect this was a welcome relief. Participants who were socially isolated wanted more opportunities to meet other people, such as organized social groups, but were not sure how to access these. Conclusion: Results suggest that friendship, although challenging, can be navigated successfully for some young adults on the autism spectrum. These findings have implications for supporting young adults in their efforts to make friends in ways that work best for them and for creating measures that more accurately reflect their perspectives and needs. Reframing the concept of friendship to include a wider array of experiences and perspectives, identifying successful strategies, and creating more accurate assessments could present a very different picture of friendship and contribute to better outcomes for this unique population. Lay Summary: Background:: Young adults on the autism spectrum often have difficulty making friends due to challenges with social communication. Nevertheless, some do enjoy friendships with their peers. The purpose of this article is to describe friendship seeking from the perspectives of young adults on the autism spectrum and explore the diverse ways that some develop satisfying friendships despite social difficulties. This information can be used to support young adults in their efforts to make friends by identifying the approaches and strategies that work best for them.About This Study:: The information in this article comes from a study we conducted about the transition to adulthood for young adults. We interviewed 20 young adults about their life experiences in their late teens and 20s. Friendship was very important for most of them and they described their desires to have friends, their efforts to make friends, and the significant difficulties and frustrations they faced. They attributed these difficulties to being seen as different from others and too few opportunities to socialize. They had the most success by finding friends who accepted and appreciated their social differences. In these relationships, they did not have to worry about social norms the way they usually did. Several participants found it easier to relate to others on the spectrum and participated in organized social groups. Still others made friends around shared interests where their autism was not a primary concern. Overall, our interviews showed that young adults on the autism spectrum seek friends in a variety of ways.What This Information Tells Us:: Researchers and service providers often conclude that friendship for people on the autism spectrum is lacking when compared with their typically developing peers. However, the experiences of some young adults can tell a story of difference rather than deficit. From this and other studies, it is clear that people on the autism spectrum may perceive friendship differently, have different priorities or goals for friendship, and have different ways of seeking and experiencing friendship than their typical peers. If we broaden our ideas of friendship to be more inclusive, things might appear very differently. Even so, many young adults struggle to make friends. By understanding their experiences with friendship, identifying where they need help, and identifying strategies and approaches that might work best for them, we can better support their efforts.