Autism voices: Perspectives of the needs, challenges, and hopes for the future of autistic youth

Abstract

The Autism Voices study draws on novel inclusive methods to obtain the first-person experiences of autistic youth with a range of cognitive and verbal abilities. Thirty-one autistic youth were interviewed with a strength-based protocol, enabling them to provide responses in the modality of their choice. Dynamics between youth and their environments such as home, school, and community were explored. Youth were questioned about their interests, plans for the future, experiences with various emotions, and experience of autism. Based on a thematic analysis, six themes emerged: (1) autistic identities, (2) thinking about the future, (3) seeking social connection on their own terms, (4) seeking autonomy, (5) school as both a stressor and social facilitator, and (6) experiences of stress and anxiety. The experiences described by autistic youth parallel many of the aspirations and challenges of typically developing adolescents, while being uniquely shaped by their autism. We discuss how these insights shared by autistic youth can facilitate active involvement in their communities, promote well-being, and promote optimal transition into adulthood. Autism Voices demonstrates that partnering with multiple stakeholders and the use of inclusive methodologies are pivotal steps toward capturing the voices of all autistic youth. Lay abstract Currently, our understanding of the adolescent period for autistic youth has relied on the expertise of researchers, clinicians, parents, and teachers, yet rarely involves their unique first-person experiences. Our study attempted to understand the experiences and perspectives of autistic adolescents in their home, school, and community environments using the Autism Voices protocol, a semi-structured interview specifically designed and tailored to engage with autistic youth with various language and intellectual levels. The analysis of the 31 interviews conducted with autistic adolescents aged 11–18 years highlighted six themes: (1) autistic identities, (2) thinking about the future, (3) seeking social connection on their own terms, (4) seeking autonomy, (5) school as both a stressor and social facilitator, and (6) experiences of stress and anxiety. These results highlight similarities and differences in the adolescent experiences of autistic youth compared to their typically developing peers. Our findings suggest that by removing assumptions about the experiences of autistic individuals and investing in inclusive interview methods, we can faithfully capture the experiences of autistic youth regardless of their communication and cognitive abilities. Being able to capture and amplify these diverse voices will facilitate the active involvement of autistic communities in research and clinical and policy decisions that impact them.

The lived experience of mental disorders in adolescents: a bottom‐up review co‐designed, co‐conducted and co‐written by experts by experience and academics

“…Adolescents with autism spectrum disorders typically feel very different from their peers: “ It is like… American people write back and forth, and Chinese [people] write up and down ” 73 . Sometimes they explain their neurodiversity in terms of a biological condition: “ Just the paths of how things transmit in a neuro‐typical brain and an autistic brain ” 73 . In other cases, they may need to label their condition to understand it fully: “I'd rather be different and have a reason for it than not be different” 74 .…”

“…Neurodiversity makes the lived world of adolescents with autistic spectrum disorders an extremely challenging place, particularly when confronted with the neurotypical world (“ This world is still a puzzle to me, like how people act and how rules are ” 73 ; “ I’m working my brain harder than anyone else” 76 ). They may feel their mind “ moving into chaos, like a messy office ” 77 .…”

“…Several adolescents with autism feel that “ loneliness in itself isn’t great” 73 . Rather , they long for few and warm connections: “ I do prefer having fewer people in my environment… I’d rather have a few close friends rather than just more friends” 73 .…”

“…Several adolescents with autism feel that “ loneliness in itself isn’t great” 73 . Rather , they long for few and warm connections: “ I do prefer having fewer people in my environment… I’d rather have a few close friends rather than just more friends” 73 . Nevertheless, social relationships are simultaneously experienced as overwhelming: “ After a while, I find people a bit draining ” 75 , because of difficulties reading, interpreting and understanding others’ emotions 75 .…”

Associations between social activities and depressive symptoms in adolescents and young adults with autism spectrum disorder: Testing the indirect effects of loneliness

“…Despite persistent social difficulties, qualitative and quantitative studies show that individuals on the autism spectrum desire social relationships and connections (Jones & Meldal, 2001; Müller et al, 2008; Sosnowy et al, 2019; Tesfaye et al, 2023). Thus, it should not be surprising that low social participation (Mazurek, 2013) and social anhedonia (Han et al, 2019) have been associated with loneliness in this population.…”