The lived experience of adults with autism spectrum disorder: a bottom-up review co-written by experts by experience and academics

TY - JOUR

T1 - The lived experience of adults with autism spectrum disorder: a bottom-up review co-written by experts by experience and academics

AU - Fusar-Poli, Paolo

AU - Damiani, Stefano

AU - Brondino, Natascia

AU - Arzarello, Alessandra

AU - Estrade Vaz, Andres Estrade

AU - Gatti, Filippo

AU - Üçkardeş, Berfin Sibel

PY - 2026/3/26

Y1 - 2026/3/26

N2 - We provide here the first bottom-up review of the lived experience of adult autistic individuals with high cognitive skills (i.e., without comorbid intellectual disability), co-written by experts by experience and academics. First-person accounts from within and outside clinical domains were identified, selected and discussed in collaborative workshops involving experts by experience and professionals with diverse backgrounds, during which “personal communications” were also recorded. The collected material was enriched by phenomenologically informed perspectives, shared with all collaborators in a cloud-based system, and stratified across three overarching themes through iterative thematic analysis. The lived world of autistic individuals with high cognitive skills was characterized by an altered experience of: self and emotions (experiencing body sensations as either muted or unavoidably loud; feeling out-of-tune with the surroundings; feeling inadequate or flawed in regulating emotions); selective but deeply immersive focus (grasping selected details while filtering out the rest; getting deeply absorbed in specific and fascinating interests); constant struggles to face changes and transitions (needing structure and routine; feeling unsettled by sudden or unpredicted changes); and the experience of an overwhelming world (sensing the outside as intensely amplified; reaching overload under high stimulation). The lived experience of autistic individuals in the social and cultural context was characterized by effortful and uncertain connections with others (struggling with implicit meanings and mutual misunderstandings; being drained by social interactions; adapting to others while trying to remain oneself), and navigating through social environments that do not fully fit (family; school/university; friends; romantic relationships; work). The experience of autistic individuals accessing and receiving care was characterized by delays in receiving the appropriate diagnosis and support (facing barriers when seeking care; being treated for years for other mental health conditions); a range of reactions to the diagnosis (from a deep sense of relief to disorientation and emotional ambivalence); a variety of experiences of care and support (from encountering fragmented and vanishing support to experiencing relational continuity and understanding); self-affirmation (identifying personal needs; feeling empowered through strengths and achievements; reaching self-acceptance; sharing a sense of belonging; seeing differences as a resource; imagining and building the future). These findings can contribute to the dialogue between science and lived experience by informing clinical practice, research, education and policy on autism spectrum disorder.

AB - We provide here the first bottom-up review of the lived experience of adult autistic individuals with high cognitive skills (i.e., without comorbid intellectual disability), co-written by experts by experience and academics. First-person accounts from within and outside clinical domains were identified, selected and discussed in collaborative workshops involving experts by experience and professionals with diverse backgrounds, during which “personal communications” were also recorded. The collected material was enriched by phenomenologically informed perspectives, shared with all collaborators in a cloud-based system, and stratified across three overarching themes through iterative thematic analysis. The lived world of autistic individuals with high cognitive skills was characterized by an altered experience of: self and emotions (experiencing body sensations as either muted or unavoidably loud; feeling out-of-tune with the surroundings; feeling inadequate or flawed in regulating emotions); selective but deeply immersive focus (grasping selected details while filtering out the rest; getting deeply absorbed in specific and fascinating interests); constant struggles to face changes and transitions (needing structure and routine; feeling unsettled by sudden or unpredicted changes); and the experience of an overwhelming world (sensing the outside as intensely amplified; reaching overload under high stimulation). The lived experience of autistic individuals in the social and cultural context was characterized by effortful and uncertain connections with others (struggling with implicit meanings and mutual misunderstandings; being drained by social interactions; adapting to others while trying to remain oneself), and navigating through social environments that do not fully fit (family; school/university; friends; romantic relationships; work). The experience of autistic individuals accessing and receiving care was characterized by delays in receiving the appropriate diagnosis and support (facing barriers when seeking care; being treated for years for other mental health conditions); a range of reactions to the diagnosis (from a deep sense of relief to disorientation and emotional ambivalence); a variety of experiences of care and support (from encountering fragmented and vanishing support to experiencing relational continuity and understanding); self-affirmation (identifying personal needs; feeling empowered through strengths and achievements; reaching self-acceptance; sharing a sense of belonging; seeing differences as a resource; imagining and building the future). These findings can contribute to the dialogue between science and lived experience by informing clinical practice, research, education and policy on autism spectrum disorder.

M3 - Review article

SN - 1723-8617

JO - World Psychiatry

JF - World Psychiatry

ER -