“We are different, that’s a fact, but they treat us like we’re different-er”: understandings of autism and adolescent identity development

Mesa, Sue; Hamilton, Lorna

doi:10.1108/aia-12-2020-0071

Cited by 13 publications

(13 citation statements)

References 54 publications

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“…The findings also indicate that, for some, the autism diagnosis can challenge identity development, impacting (sometimes quite significantly) mental well-being. In line with previous studies (Cresswell & Cage, 2019; Mesa & Hamilton, 2022; Mogensen & Mason, 2015; Riccio et al, 2020), our findings support calls for advice and support for parents on explaining/disclosing an autism diagnosis; psychoeducational interventions for autistic teenagers themselves; and guidance for schools on nurturing positive perspectives on neurodiversity.…”

Section: Discussionsupporting

confidence: 91%

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

Mukherjee

Beresford

2023

Autism

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The high prevalence of mental health and behaviour problems among autistic children and adults is an issue of concern to the autism community. Many studies have been undertaken to identify the factors that protect against/or increase the risk of such difficulties. However, this research is dominated by quantitative observational studies. In this study, we sought to investigate the same issue using a qualitative research approach, positioning parents as experts and eliciting their theories as to what influenced their child’s mental health from diagnosis to the late teenage years. In-depth interviews were undertaken with 33 parents (30 mothers, 3 fathers) of 31 autistic teenagers (21 males, 10 females) aged between 15 and 19 years (median 17 years) purposively sampled from an existing cohort (QUEST). Parents believed a wide range of child-centred, developmental and socio-environmental factors had played a role in their child’s mental health, alongside life events involving loss and separation. A number of these factors have received little or no research attention to date (e.g. aspects of the school environment). The findings have important implications, highlighting factors that should be given priority in future research, as well as interventions needed to support the mental health of autistic teenagers. Lay abstract Autistic people are more likely to experience mental health difficulties compared to neurotypical people. It is very important that we understand what increases the risk for mental health difficulties, and what helps to protect against them. So far, research on this for children and young people has only investigated a small number of factors and these have been chosen by researchers and clinicians. This study took a different approach in which parents’ expertise in their children was recognised. Parents were asked to tell the story of their autistic teenagers’ mental health from diagnosis in early childhood through to the present, and to explain the ‘theories’ they developed about what affected their child’s mental health – positively and negatively – and how. Parents believed a wide range of factors played a role. These include: (1) aspects of their child (e.g. their autistic traits, intelligence); (2) aspects of their surroundings (e.g. the efforts parents make to prevent and respond to their child’s difficulties, features of the school they attend, availability of social activities); (3) changes their child experienced growing up (e.g. puberty, awareness of being autistic); and (4) life events involving loss and separation. Many of the factors parents identified as important have received little or no research attention to date. The findings suggest issues that should be considered in future research and reveal ways that support for parents and autistic children and teenagers can be improved.

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Section: Discussionsupporting

confidence: 91%

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

Mukherjee

Beresford

2023

Autism

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“…The pressure to fit in that adolescents often experience has led researchers to speculate that learning one is autistic may be particularly challenging for adolescents (e.g. Humphrey & Lewis, 2008; Mesa & Hamilton, 2021). However, our findings suggest that both children and adolescents may be susceptible to initial negative feelings when first learning they are autistic despite potential long-term mental health benefits of gaining access to this important information earlier.…”

Section: Discussionmentioning

confidence: 99%

Does learning you are autistic at a younger age lead to better adult outcomes? A participatory exploration of the perspectives of autistic university students

Oredipe

Kofner

Riccio

et al. 2022

Autism

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Many autistic people do not learn they are autistic until adulthood. Parents may wait to tell a child they are autistic until they feel the child is “ready.” In this study, a participatory team of autistic and non-autistic researchers examined whether learning one is autistic at a younger age is associated with heightened well-being and Autism-Specific Quality of Life among autistic university students. Autistic students ( n = 78) completed an online survey. They shared when and how they learned they were autistic, how they felt about autism when first learning they are autistic and now, and when they would tell autistic children about their autism. Learning one is autistic earlier was associated with heightened quality of life and well-being in adulthood. However, learning one is autistic at an older age was associated with more positive emotions about autism when first learning one is autistic. Participants expressed both positive and negative emotions about autism and highlighted contextual factors to consider when telling a child about autism. Findings suggest that telling a child that they are autistic at a younger age empowers them by providing access to support and a foundation for self-understanding that helps them thrive in adulthood. Lay abstract People learn they are autistic at different ages. We wanted to know if telling kids they are autistic earlier helps them feel better about their lives when they grow up. We are a team of autistic and non-autistic students and professors. Seventy-eight autistic university students did our online survey. They shared how they found out they were autistic and how they felt about being autistic. They also shared how they feel about their lives now. Around the same number of students learned they were autistic from doctors and parents. Students who learned they were autistic when they were younger felt happier about their lives than people who learned they were autistic when they were older. Students who learned they were autistic when they were older felt happier about being autistic when they first found out than people who did not have to wait as long. Our study shows that it is probably best to tell people they are autistic as soon as possible. The students who did our study did not think it was a good idea to wait until children are adults to tell them they are autistic. They said that parents should tell their children they are autistic in ways that help them understand and feel good about who they are.

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“…First, the ‘hidden curriculum’ at university – that is, the unwritten, and sometimes unintentional, institutional expectations of how students will behave, study, and interact, which are not explicitly taught – tends to exclude minoritised groups from reaching their potential ( Sulaimani and Gut, 2019 ). Second, neurodivergent students often come to university with a negative schema of education following their experiences at school ( Lithari, 2019 ; Mesa and Hamilton, 2022a , b ). Experiences of non-accepting environments in earlier education can have long-lasting impacts, and can contribute to a negative sense of self, affected wellbeing and reduced quality of life for older students and adults ( Hong et al, 2016 ).…”

Section: Neurodivergent Students At Universitymentioning

confidence: 99%

Compassionate pedagogy for neurodiversity in higher education: A conceptual analysis

Hamilton

Petty

2023

Front. Psychol.

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The neurodiversity paradigm challenges pathologising accounts of neurodevelopmental differences, including autism, attention deficit disorder (ADHD), dyslexia, developmental language disorder (DLD) and others. From a neurodiversity perspective, these differences in the way people perceive, learn about and interact with the world are conceptualised as naturally occurring cognitive variation, akin to biodiversity in the natural environment, which may bring unique strengths and challenges for individuals. An implication of this approach is that interventions designed to create contexts in which neurodivergent people can thrive are needed, in addition to those that seek to ameliorate individual-level difficulties. In this conceptual review, we consider how higher education can offer a context in which cognitive diversity can be noticed, welcomed and accepted with warmth. In universities, neurodiversity is one dimension of difference within an increasingly diverse student population, which overlaps – but is not synonymous – with disability. We argue that improving experience and outcomes for neurodivergent students should be a priority for universities aiming to produce graduates equipped to tackle the complex problems of contemporary society. Drawing on the foundational principles of compassion-focused psychological therapies, we consider how compassion can be enacted within interpersonal interaction, curriculum design, and leadership culture in universities. We apply the insights of double empathy theory to the problem of overcoming barriers of difference in the classroom. Finally, we make recommendations for Universal Design for Learning (UDL) and strengths-based pedagogical approaches, which create a fit-for-purpose educational environment for the widest possible range of learners. This realignment with the neurodiversity paradigm offers an antidote to bolt-on provisions for students who differ from the neuro-normative, and might enable neurodivergent thinkers to flourish within and beyond higher education.

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“We are different, that’s a fact, but they treat us like we’re different-er”: understandings of autism and adolescent identity development

Cited by 13 publications

References 54 publications

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

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

Does learning you are autistic at a younger age lead to better adult outcomes? A participatory exploration of the perspectives of autistic university students

Compassionate pedagogy for neurodiversity in higher education: A conceptual analysis

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