Understanding Autistic experiences with autism diagnostic processes in the United States is an important priority, including whether assessment experiences differ by diagnostic timing (whether individuals were diagnosed as a child or adult) and gender. Autistic adults (N = 129) who self-consented to participate in online research completed a survey assessing various domains of assessment experiences (e.g., factors leading to an assessment, assessment visits, emotional reactions to diagnosis, post-diagnostic support, diagnostic satisfaction, diagnostic barriers). Analyses examined correlates of diagnostic satisfaction and differences in diagnostic experiences by diagnostic timing and gender (cisgender women, cisgender men, gender diverse group). Fewer barriers to diagnosis, receiving a written report, seeing fewer providers, receiving post-diagnostic resources, and feeling relieved in response to the diagnosis related to higher diagnostic satisfaction. Adult-diagnosed individuals were more likely to raise the question of whether they were Autistic themselves, have mental health concerns contribute to seeking an assessment, and have more positive emotional reactions to the diagnosis compared to child-diagnosed individuals. Barriers and desired post-diagnostic supports also differed by diagnostic timing. Cisgender women and individuals in the gender diverse group were more likely to feel relieved in response to their autism diagnosis. The gender diverse group was most likely to desire post-diagnostic support regarding trauma and suicidality and reported the highest number of barriers to diagnosis. Diagnostic timing and gender relate to a range of diagnostic experiences. Findings highlight the importance of enhancing post-diagnostic support and reducing barriers to assessment, particularly across Autistic people of different genders.
From the article:
Experiencing more barriers to diagnosis was associated with lower overall diagnostic satisfaction (Lewis, 2017), with barriers differing across diagnostic timing and gender. Although total barrier scores did not differ across diagnostic timing, those diagnosed in adulthood reported higher levels of barriers regarding cost and lack of health insurance compared to those diagnosed in childhood. Financial barriers were more commonly reported by individuals diagnosed in adulthood, aligning with prior research identifying cost as a key obstacle to autism assessment for adults (de Broize et al., 2022). These barriers may include difficulties finding an in-network provider who conducts adult assessments, travel expenses, and indirect costs such as lost wages or childcare. However, research suggests these concerns are also widespread among caregivers of Autistic children (Smith-Young et al., 2025). Thus, cost may be a structural barrier in autism diagnostics throughout the lifespan, necessitating policy changes like insurance reform, expanded public services, and financial assistance for adults and families seeking evaluations. Child-diagnosed individuals reported higher levels of barriers about understanding what the provider is saying, and not seeing themselves in the current idea of what autism is. There may be fewer resources for disclosing autism diagnosis to youth (Smith et al., 2018), although recent research has sought to address this gap in partnership with Autistic people (Almog et al., 2024).
