Factors influencing the mental health of autistic children and teenagers: Parents' observations and experiences

The paper addresses why autistic children and teenagers experience elevated rates of mental health and behavior problems (MHBPs) compared to the general population and seeks to understand, from parents’ perspectives, which factors influence the onset, maintenance, and change in these difficulties over time. Motivated by the autism community’s prioritization of mental health, the study positions parents as experts to develop theory inductively about risk and protective factors from diagnosis in early/mid-childhood through late adolescence. The work is framed by the transactional model of development, emphasizing dynamic interactions between child characteristics, developmental changes, and socio-ecological environments (family, school, peers, community).

Background evidence shows substantially higher prevalence of mental health and behavioral problems among autistic individuals, with adolescence marked by persistent/increasing anxiety and rising depression. Prior quantitative research identifies multiple influences beyond autism severity: cognitive and child-centered factors (verbal IQ, theory of mind, perceptual processing, alexithymia, adaptive functioning) and socio-environmental factors (parental psychological distress, parenting styles, household chaos, peer network size, bullying, socio-demographics, adverse life events). However, socio-environmental research has focused largely on home/parent factors, with limited examination of the school environment. Few qualitative studies have explored broader causal theories from parents; existing qualitative work has narrow foci (ASD symptoms, anxiety management strategies, parental support practices). This study fills that gap by eliciting parents’ theories across childhood to late teens, integrating child, developmental, and environmental factors.

Design: Cross-sectional generic qualitative study informed by phenomenological and narrative approaches. Theoretical framework: Transactional model of development. Sample and setting: Parents from the UK QUEST cohort (initially recruited 2008 post-diagnosis). Three prior cohort waves provided data on autism severity, MHBPs, and IQ (Wave 1: ages 4–9; Wave 2: 11–15; Wave 3: 13–17). Purposive sampling targeted representation of eight possible MHBP trajectories based on clinical cut-offs (Waves 1–2: Developmental Behaviour Checklist; Wave 3: Strengths and Difficulties Questionnaire), balanced by IQ (<70 vs >70) and gender. Recruitment: Sept 2019–Feb 2020 via telephone contact from QUEST; consenting parents scheduled for interview. Participants: 33 parents (30 mothers, 3 fathers) of 31 autistic teenagers (21 males, 10 females), ages 15–19 (median 17); 10 with learning disability (IQ <70). Data collection: In-depth narrative interviews (n=29 telephone; n=2 face-to-face; two joint interviews), 34–192 minutes (median 74). Interviews covered background/context, parents’ longitudinal narrative of child’s mental health since diagnosis, and elicited parents’ explanations of influential factors (bio-psychological and socio-ecological). Interviews were audio-recorded, transcribed verbatim; field notes and pen portraits supported immersion. Analysis: Thematic analysis with development and testing of an analytical coding framework combining a priori and emergent themes. In-line coding; extraction to Excel charts with summaries and quotes; comparative analysis within and across cases to track trajectories and patterns by subgroups (LD status, gender, school type). Analytical leadership by SM with regular discussion/validation with BB. Community involvement: Advisory panels of autistic adults (without LD) and parents provided feedback on preliminary findings and analysis. Ethics: NHS REC approval (18/WS/0204); verbal informed consent audio-recorded. Data archiving: University of York Research Data Service (anonymized access by request).

• Sample profile: 33 parents of 31 autistic teenagers (21 male, 10 female), ages 15–19 (median 17); 10 with LD (IQ<70). Seventeen had moved at least once across MHBP clinical cut-offs over cohort waves; 11 were always above; 3 always below.
• Trajectories and presentation over time: Parents described four broad MHBP trajectories (not always aligning with cohort data). Early/middle childhood accounts emphasized behavioral dysregulation (tantrums/meltdowns). In late childhood/adolescence, concerns shifted toward emotional difficulties (anxiety, depression), increased severity/diversity of MHBPs, and emergence of new problems: suicidal ideation/attempts, eating disorders, video game overuse/addiction, and controlling behavior at home; more severe self-harm; social withdrawal; occasional incidents leading to police involvement.
• Child-centered factors: • Autistic traits (rigidity, special interests, sensory sensitivities, social communication differences) underpinned many MHBPs; adolescent peer relationship challenges and bullying were often primary drivers of low mood/depression. • Verbal communication: Post-diagnosis gains in communication were protective; limited/no verbal communication linked to aggression/anger due to unmet communication needs. • Intelligence: Higher perceived intelligence sometimes exacerbated MHBPs via sophisticated rationalization, rejection of support, and covert risky behaviors.
• Socio-environmental factors: • Parents’ capacity/skills: Many developed tailored strategies (accommodation vs exposure), often feeling competent post-diagnosis, but adolescence brought novel/worsening MHBPs that eroded confidence. Capacity influenced by parents’ health, caregiving demands, partner presence, finances, and access to autism-specific guidance; statutory support often lacking, prompting self-directed learning or private services. Some parents reflected on actions that may have inadvertently worsened MHBPs (e.g., frustration, avoidance, excessive autonomy online). • Siblings: Positive sibling relationships supported social/communication development and provided emotional support; negative dynamics heightened home conflict and worsened behavior. • Peers: Significant positive friendships were uncommon; bullying and peer difficulties frequently worsened anxiety, panic, and eating problems. Specialist-interest schools (e.g., arts, maths) fostered acceptance and reduced anxiety through like-minded peers. • Social networks and community: Extended family, community clubs, and befriender services boosted self-esteem, offered meaningful activities, and diversified support; loss of such supports often precipitated deterioration. • School environment: A major determinant of mental health. Autism-specialist accommodations (visual supports, social stories), neurodiversity-affirming ethos, opportunities aligned with interests, staff consistency, and collaborative parent-school partnerships were protective. Risks included punitive responses in mainstream settings, academic pressure (GCSE/A-level years), inconsistent staff practices, sensory overload in special schools (noise/unpredictability), and negative peer/classmate behaviors modelling. School changes often led to dramatic improvements; some exceptions noted (e.g., mainstream to special for those without LD). Schools also influenced parental capacity through partnership quality (respect, communication, joint decisions). • Mental health services: Access barriers were common; cost limited private options. Engagement challenges included denial of need and difficulty attending clinics (transport/reluctance to leave home). Intervention effectiveness was variable.
• Developmental changes: • Puberty/sexual development: Hormonal/physical changes linked to increased volatility; increased size limited physical management, sometimes led to parental fear and avoidance, enabling controlling behaviors or excessive gaming. • Identity development and diagnosis: Adolescents without LD often became more aware of diagnosis; many held negative views (shame/embarrassment), resisted disclosure/support, and experienced worse mental health, including self-harm/suicidality. Positive reframing via parental efforts or school counselling could improve acceptance and reduce conflict. • Social skills and self-management: Some adolescents developed better social competence and coping strategies for sensory/novelty stressors, reducing anxiety and loneliness.
• Life events: Bereavements and separations (temporary/permanent) frequently precipitated deteriorations. Autistic youths were viewed as especially vulnerable due to limited social networks and sensitivity to change/uncertainty.

Parents’ expert accounts illuminate a complex, transactional system in which child characteristics, developmental processes, and socio-environmental contexts jointly shape autistic teenagers’ mental health. Findings corroborate quantitative evidence on child-centered influences (autistic traits, communication, intelligence) and extend understanding by foregrounding developmental processes (puberty, identity formation, evolving social/self-regulation skills) and underexplored socio-environmental contexts, especially the school environment. Parents highlighted school ethos, autism-specific accommodations, staff consistency, academic pressures, peer dynamics, and parent-school partnerships as major determinants, with schools also indirectly shaping outcomes by supporting or straining parents’ caregiving capacity. Life events involving loss/separation posed disproportionate risks due to change and limited networks. Implications include the value of transactional frameworks in research; prioritizing measures of school environment and developmental domains; and practical needs for sustained autism-specialist support for families post-diagnosis, identity-affirming psychoeducation for adolescents, school guidance on neurodiversity-positive practices, and reducing access barriers to mental health care (including remote options).

This qualitative study contributes an integrative, parent-derived account of factors influencing autistic adolescents’ mental health across development. It identifies multifactorial, transactional pathways involving autistic traits, communication and intelligence, developmental changes (puberty, identity, skills), socio-environmental contexts (parents, siblings, peers, broader social networks, school), service access, and life events. The school environment emerged as a particularly influential setting with both risks and protective elements. The study underscores the need for research grounded in transactional models, for robust indicators of school context and developmental processes, and for policy/practice that equips and supports parents beyond diagnosis, promotes positive autistic identity, fosters neurodiversity-affirming school cultures, and improves access/engagement with mental health services. Future research should include longitudinal, in-the-moment parent and youth perspectives, incorporate fathers’ views, directly involve autistic children/teens, and broaden sampling to diverse regions and school/service contexts.

• Participant profile skewed toward mothers; fathers’ perspectives underrepresented.
• Retrospective accounts from early childhood may be affected by recall bias; prospective, repeated ‘in the moment’ approaches are needed.
• Absent autistic youths’ own voices; direct youth perspectives would deepen understanding.
• Sample initially recruited from families living in London at diagnosis; may not reflect the full diversity of UK school environments and autism-specialist services, limiting generalizability.