Open access article: https://kclpure.kcl.ac.uk/ws/portalfiles/portal/381258533/Emotional_Burden_for_ND_Students-Author_Accepted_Version.pdf

Abstract

Purpose

Compared to neurotypical peers, neurodivergent students experience increased exposure and more intense responses to commonly upsetting events (emotional burden), contributing to poor mental health. Student and staff perspectives offer insights into sources of emotional burden in school and how they can be managed and reduced. However, student and staff perspectives are rarely explored together.

Methods

Focus groups with students (11–16 years, n = 11) with autism or ADHD diagnoses, and school staff (n = 12) were used to explore the impact of the school environment on students’ emotions. Multimedia methodologies supported communication and participation.

Results

Reflexive thematic analysis generated three themes: Theme 1 “Upsetting experiences in school that trigger negative emotions” with subthemes: (i) an overwhelming and uncertain physical environment; (ii) a lack of belonging and understanding; (iii) inflexible school policies; (iv) an overemphasis on academic achievement; Theme 2 “Staff-specific barriers to supporting neurodivergent students” with subthemes (i) staff wellbeing; (ii) inconsistent understandings of, and support for, neurodivergent students; and Theme 3 “Promoting emotionally healthy school environments” with subthemes: (i) whole school collaboration and action; (ii) positive approaches and agency; (iii) building trust, understanding and belonging; (iv) close staff relationships, training and supervision.

Conclusion

Staff and students had shared understandings of stressors, staff through observing behaviour, students through internal experience. Both reported helpful practices, primarily environmental adaptations to accommodate students’ needs. Staff also reflected on their own wellbeing, training and supervision. These insights offer a nuanced understanding of student and staff knowledge to inform policy, practice, and research in school settings.

Citation: Kakoulidou, M., Pavlopoulou, G., Low, L. et al. Reducing Emotional Burden Carried by Neurodivergent Students in School: Perspectives From Students and School Staff. J Autism Dev Disord (2026). https://doi.org/10.1007/s10803-026-07470-6

Open access article: https://journals.sagepub.com/doi/10.1177/13623613261474929

Abstract

For many autistic individuals, close family members represent a crucial source of support throughout their lifetime. Early autism diagnosis is thought to benefit both autistic individuals and their family members by facilitating early access to services and information. However, little research has empirically studied the relationship between age at diagnosis and well-being among autistic individuals and their family members. In this study, we examined predictors of age at autism diagnosis and its relationship with family well-being using the population-based Norwegian Mother, Father, and Child Cohort Study (MoBa). We found that the most important factors associated with a later age at diagnosis were fewer social communication difficulties at age three, fewer maternal concerns about development in early childhood, absence of a co-occurring intellectual disability diagnosis, female sex, and having older siblings. While a later age at diagnosis was associated with higher well-being for mothers and children during childhood, it was associated with lower well-being for children during adolescence. All associations were substantially attenuated after adjustment for various clinical, demographic, and genetic factors – reflecting complex patterns of confounding. We argue that future research should aim to leverage public awareness campaigns, screening programmes, or changes in clinical practice to understand the causal mechanisms underlying these relationships.

Lay abstract

Family members of autistic people are often an important source of support for their well-being. An earlier autism diagnosis might be helpful for autistic individuals and their families, because families might receive professional support sooner. However, the impact of an earlier diagnosis is difficult to study, because many child and family characteristics that lead to an earlier autism diagnosis may have their own influence on well-being in autistic individuals and their families. In this study, we look at how age at diagnosis and family well-being are related and how they both relate to different child and family characteristics. We find that children, on average, receive a later autism diagnosis when they have fewer social communication difficulties and fewer maternal concerns in early childhood, do not also have an intellectual disability diagnosis, are a girl, or have older siblings. We also found that a later autism diagnosis was associated with higher well-being for children and mothers in childhood but with lower well-being for children in adolescence. When we compared families with similar child and family characteristics, we no longer saw such clear links between age at diagnosis and well-being. This might be because of the complex mixture of influences child and family characteristics have on both age at diagnosis and well-being and suggests that other types of study may be better for investigating the impact of age at diagnosis on well-being in families.

Citation: Glaser, B. D., Bazezew, M. M., Bragantini, D., Hegemann, L. E., Orm, S., Morgan, M. J., Bishop, S. L., Valand, S. B., Hannigan, L. J., & Havdahl, A. (2026). Age at Autism Diagnosis in the Norwegian Mother, Father, and Child Cohort Study (MoBa): Exploring the Association With Family Well-Being. Autism, 0(0).

Open access article: https://www.researchsquare.com/article/rs-9940175/v1

Abstract

Adults often experience reduced social connectedness with increased age, and lack of social support can be associated with poorer quality of life. However, the social experiences and preferences of autistic adults in midlife and older age have not yet been qualitatively studied. A total of 33 autistic participants aged 40-78 years took part in our co-produced semi-structured interview study about their social preferences and experiences. Using thematic analysis, we created three themes. Themes 1 and 2, “The Impact of Ageing and Changes to Life Circumstances on Social Experiences” and "Consistency of Social Experiences Throughout Life”, directly contrasted. Theme 3 explored "Hopes and Concerns about the Present and Future”. These themes highlight the varied impact of ageing, resulting in the overarching sentiment that “one size does not fit all” when considering the social needs of autistic adults in midlife and older age. Although some aspects remained consistent, many reported reduced or more challenging social experiences with age, with many expressing concerns about the future. Motivations and barriers were also found to differ with age. These findings highlight targets for social support for older autistic adults, and the need for further research into specific age-related factors impacting their social experiences.

Citation: Nell Fahey, Christine A. Jenkins, Wing Lam Chan et al. Exploring the Social Experiences and Preferences of Autistic Adults in Midlife and Older Age: A Co-Produced Qualitative Study, 07 June 2026, PREPRINT (Version 1) available at Research Square [https://doi.org/10.21203/rs.3.rs-9940175/v1]

Open access article: https://journals.sagepub.com/doi/pdf/10.1177/13623613261435249?casa_token=KQXoy-C7lvQAAAAA:yPS_Tn-bVg7i0giaCQKUgDCDrk_H33FTLH57dSoBv7VMNhxfP1Ougcr1YfeDzIe3O1_LyMz7jhL8OQ

Abstract

Autistic people are a high-risk group for suicide, and self-harm is one of the strongest predictors of death by suicide among autistic people. There are no validated measures to assess self-harm with or without suicidal intent among autistic people. We aimed to describe the challenges reported by autistic people when completing the Self-Injurious Thoughts and Behaviours Interview (SITBI) and researchers’ experiences of supporting them. We undertook thematic analysis of feasibility interview transcripts from a pilot randomised controlled trial of autism-adapted safety plans carried out in the United Kingdom. One theme, ‘Reaching an authentic answer’ overarched three subthemes: ‘Conceptualising suicidal plans’; ‘Defining parameters of suicidal thoughts’; and ‘Capturing self-harm’. Researchers validated autistic experience and developed trusting partnership with participants to overcome ambiguous language and a lack of valid response options. Data were gathered on an opportunistic basis, rather than with this intended purpose, meaning this may not constitute an exhaustive survey of this issue. Researchers can support autistic people to report self-harm using the SITBI and other measures designed with non-autistic people in mind by clarifying the meaning of questions and working collaboratively on a response that matches participants’ experience. Researchers and clinicians should validate autistic experiences of self-harm and suicidality.

Citation: Gordon, Isabel & Pelton, Mirabel & Goodwin, Jane & Herrington, Ruby & Rodgers, Jacqui & Cassidy, Sarah. (2026). ‘My Answers Don’t Fit Your Options’: Measuring Self-Harm With Autistic People Using the Self-Injurious Thoughts and Behaviours Interview (SITBI). Autism. 10.1177/13623613261435249.

Open access article: https://journals.sagepub.com/doi/10.1177/13623613261420085

Abstract

It has been suggested that there is poor clarity of the ‘camouflaging’ concept in autism research, and potential confounding of its measurement tools, such as the Camouflaging Autistic Traits Questionnaire (CAT-Q). A critical review of 389 studies was conducted to investigate these potential conceptual and methodological issues. The findings question whether the same construct has been investigated across studies, as there is inconsistency in: (a) which terms are used; (b) reference made to established conceptual literature; (c) how terms are used (e.g. interchangeably or distinctly); and (d) how terms are defined. Although the CAT-Q has excellent reliability, there is mixed support for its validity, which is evidenced by its confounding by other constructs (e.g. social anxiety) and its limited autism-specificity. The validity of informant discrepancy measures of camouflaging is also questioned due to insufficient reference to established methodology. Finally, the generalisability of camouflaging to the overall autistic population is unclear due to: (a) overrepresentation of autistic females diagnosed during adulthood; and (b) underrepresentation of autistic people with co-occurring intellectual or language difficulties, and those with greater support needs. These issues are considered both in terms of their clinical relevance and how future research might resolve them.

Citation: Arnold, W. M., Bitsika, V., & Sharpley, C. F. (2026). Camouflaging and autism: Conceptualisation and methodological issues. Autism, 0(0). https://doi.org/10.1177/13623613261420085