Incorporating Psychoeducational Care in the Autism Diagnosis Pathway: Experiences, Views, and Recommendations of UK Autistic Adults and Autism Professionals.

When someone receives a diagnosis they may need support with information and emotional needs. These are called psychoeducational needs. For adults diagnosed with autism, these can include needing to understand and make sense of the diagnosis and finding self-management strategies that work for them. When autistic adults do not receive the psychoeducational support they need their mental health and self-confidence in managing everyday life is affected. However, many diagnostic services do not provide psychoeducational care. In this study, we investigated autistic adults' and autism specialist staff's views on the psychoeducational care that diagnostic services should provide. We recruited 26 autistic adults and 30 staff working in 8 UK autism services commissioned to provide both diagnostic assessments and post-diagnostic care. The staff sample included five autistic adults employed as "experts by experience" to co-deliver psychoeducational support. We used group discussions (or, where required, 1:1 interviews) to explore their views and experiences. Study participants believed psychoeducational needs arose during the assessment process (e.g., possible emotional reactions to diagnosis), and when the diagnosis is divulged (e.g., managing disclosure) as well as during the weeks and months following diagnosis. In this period, study participants agreed that the psychoeducational care offered by diagnostic services should include a debrief appointment, psychoeducation program, and the provision of "curated" information. That is, information resources carefully selected by staff and in multiple formats (e.g., text-based, videos). Study participants believed autism professionals and "experts by experience" had distinct contributions to make in meeting psychoeducational needs. Findings support the case for diagnostic services to have the resources to address psychoeducational needs across the diagnostic pathway, including the offer of a debrief appointment and group-delivered psychoeducational program (with the option for 1:1 delivery) post-diagnosis. "Experts by experience" should be integral to the development and delivery of psychoeducational care.

Beresford B ，Mukherjee S 《-》

"I've Spent My Whole Life Striving to Be Normal": Internalized Stigma and Perceived Impact of Diagnosis in Autistic Adults.

Huang Y ，Trollor JN ，Foley KR ，Arnold SRC ... -  《-》

Using Experience Sampling Methodology to Capture Disclosure Opportunities for Autistic Adults.

Love AMA ，Edwards C ，Cai RY ，Gibbs V ... -  《-》

The Lived Experience of Autistic Adults in Employment: A Systematic Search and Synthesis.

Employment is a critical factor contributing to the well-being and quality of life of autistic people of working age. Historically, research has tended to focus on interventions and employment-related outcomes, typically generated without the input of autistic workers. Interventions often work to help the autistic worker fit into the working environment rather than it being adjusted for the autistic worker. However, a growing body of research reflects autistic workers' experiences of employment with consideration given to how the workplace should change to reflect the differences of this historically marginalized group. This study is a systematic analysis of existing research that focuses on and prioritizes autistic workers' experiences of employment. Our analysis draws on the social relational model of disability (SRMD), an approach increasingly applied in contexts of autism and employment. We systematically searched five journal databases, resulting in 34 articles that reflect the lived experience of autistic people in employment. We identified four themes through narrative synthesis: Navigating Social Demands; the Disabling Nature of the Work Environment designed for neurotypical workers; Adapt to Me; and Understanding, Knowledge, and Acceptance. The results draw on the SRMD, revealing nuances to inclusionary and exclusionary employment for the autistic workforce. Our findings encourage the prioritization of the voice of autistic workers when designing working environments. They also function as a critique of the traditional approaches that placed employers, managers, and human resource professionals as the dominant agents of decision-making. In these traditional practices, the burden of making employment viable was on the worker, rather than the employer. The results of this study framed through the SRMD allowed for enhanced understanding of the barriers and new insights into how to improve the employment experience for autistic adults.

Thorpe D ，McKinlay M ，Richards J ，Sang K ，Stewart ME ... -  《-》

"Maybe No One Knows We Need Help": Understanding the Experiences of Autistic Working Mothers in Australia.

Although there are no known studies investigating autistic working mothers, research has demonstrated that managing employment and motherhood in non-autistic populations has specific challenges, as does employment in autistic populations. This autistic-led study aimed at investigating the experience of autistic working mothers to identify benefits, challenges, and support needs. We utilized a subjectivist epistemological perspective to learn about the experiences of autistic working mothers. We recruited 10 autistic working mothers (aged 34-50 years) via social media advertisements, who participated in a 45- to 60-minute semi-structured interview where we asked questions developed in consultation with a community reference group. We transcribed interviews and then analyzed them using inductive reflexive thematic analysis. We identified three key themes. The first theme, "Wellbeing: Work gives me purpose," discusses how employment supports mental well-being. The second theme, "Challenges: It's hard being an autistic working mother," includes the challenges of balancing work and caregiving, guilt related to being a working mother, and issues with part-time work. The third theme, "The invisible disability: Everyone thinks I look okay," discusses the lack of understanding of participants' challenges, with assumptions they are coping, and the lack of supports that led to some participants no longer seeking assistance. The responses of the autistic women who took part support a view that autistic working mothers may experience some similar challenges to non-autistic working mothers, including stress in juggling caring and work roles. They identified additional challenges related to their gender and their autistic identity, including a lack of understanding of the female (or "internalized") presentation of autism. These findings will help autistic working mothers by promoting a better understanding of their experiences and challenges when they speak with health professionals, government, and employers seeking support and accommodations.

Gore K ，Hayward SM ，Flower RL ，Gilbert M ，Barbaro J ... -  《-》