Leeds social scientists head research to celebrate diversity in the autistic community
This Autism Acceptance Day, we showcase the faculty research highlighting diversity within the autistic community and the importance of sharing and listening to the experiences of autistic people.
Since 2007, 2 April has been designated World Autism Acceptance Day. World Autism Awareness Day kickstarts World Autism Acceptance Month to promote autism acceptance, raise awareness, and celebrate the diversity within the autism community.
World Autism Acceptance Day has historically been associated with promoting autism awareness. However, more recently the purpose of this event has shifted to advocating for autism acceptance. Whilst ‘awareness’ promotes knowledge of autism and its existence, the autistic community encourages supportive and informed inclusion, embracing and accepting autistic individuals as they are, and the recognition that no two autistic individuals are the same.
On this World Autism Acceptance Day, we join thousands of people around the UK who are working together to amplify the voices of autistic people. Academic staff, undergraduate and postgraduate researchers across the Faculty of Social Sciences are leading the way on research that lifts up autistic voices and highlights the diversity within autistic communities.
It is estimated that 1 in every 100 children in the UK currently has an autism diagnosis. Over 70% of autistic children are in mainstream schools, and yet many report finding it challenging to access specialised support and even to continue attending school. The autistic community, including autistic people, their families, and education practitioners, have spoken out about the need for increased awareness and understanding of autism in schools. Several researchers in the School of Education are working to explore how school experiences can be improved for autistic individuals, from the undergraduate to postgraduate level.
School experiences of late-diagnosed autistic women
School experiences of autistic people are often mediated by the support that they receive. However, due to historic gender bias in research and clinical practice, autistic girls and women often go undiagnosed until later in life than their male peers. This means that they do not receive support targeted at autistic individuals at all.
Third-year undergraduate student Evie Marshall-Sully’s work surveyed 80 late-diagnosed autistic women, exploring how women who did not receive autism diagnoses in childhood experienced education compared to their peers. Evie’s preliminary findings indicate that undiagnosed autistic women “did not receive appropriate support, disliked school and significantly struggled with their time in education, particularly socially.”
Evie’s research shows the value of early diagnosis and targeted post-diagnostic support in schools, which is out of reach for many autistic girls who “fly under the radar” of diagnostic criteria. Evie notes that increased awareness of how autism presents in girls and women within the education and clinical sectors are key aims for her research to address these issues.
Behaviour management strategies in mainstream schools
Behaviour management strategies typically implemented in mainstream schools, such as rigid, whole-school, zero-tolerance policies, are often designed and implemented with neurotypical pupils in mind. Katie Adamson, a third-year undergraduate student, is researching teacher perspectives of mainstream school behaviour policies, and how these policies influence teacher decisions when managing the behaviour of autistic pupils. Katie’s preliminary findings suggest that experienced teachers adapt these approaches to meet the needs of autistic pupils in classrooms, but that the teachers interviewed in the study did not feel that this was always an effective form of behaviour management. Increased understanding and a method of behaviour management that is consistent between all students was preferred, although not reflected in school policy.
They felt that maintaining clear expectations and applying the same rules for sanctions and rewards supports good behaviour across the classroom for both allistic and autistic pupils.
The gap between parental and teacher expectations of autistic children and young adults
Increased teacher understanding of autism has been described as high priority by autistic students, who identify that “having a teacher who understands autism” would improve their school experience. However, postgraduate researcher Lamya Aloraini’s research suggests a gap between parental and teacher expectations for autistic children and young adults, and further highlights the need for increased public awareness of autism and its diversity. Lamya, who explored parents’ and teachers’ expectations of future outcomes for autistic children and young adults in Saudi Arabia, Lamya’s found striking dissimilarities between the expectations that parents and teachers hold for young autistic individuals: whilst parents prioritise safety, happiness, and financial security, teachers emphasise school participation and social inclusion. Parental and teacher expectations also shaped the support and opportunities made available to autistic individuals.
The thematic findings highlight the need for increased public awareness, societal acceptance, inclusive education, independence skills, tailored employment opportunities, and stronger policy support… there is no single definition of a “successful” future, emphasising the importance of flexible, inclusive systems that recognise and support these diverse developmental trajectories.
Lamya and Katie’s research speaks to the importance of days like Autism Acceptance Day, which aims to prompt people around the world to learn more about autism and to challenge expectations or open discussions around policy that may be unsupportive to autistic students. Research in this vein is crucial to challenge the way that autism has been historically conceptualised and misrepresented: the “autistic presentation” is often stereotyped, leading to narrow, prejudiced preconceptions of how autistic people should look, act like, and need in terms of support.
Tabletop role-playing games support autistic young people’s social experiences
Work by Peter Hart, Paige Davis, Hannah Nash and Ben Staincliffe challenged assumptions around the ways in which autistic individuals socialise. This study, completed as part of a ‘Laidlaw Scholar’ project, explored how tabletop role-playing games (TTRPGs), particularly Dungeons & Dragons, support autistic young people’s social experiences.
“Existing research (and wider assumptions) suggest that RPGs appeal to autistic young people due to the structured and rule-based interactions – players have their interactions facilitated by a ‘games master’, where there can be structured turn-taking in the interactions. Given the assumption autistic young people are more likely to ‘struggle’ with the implicit social cues that neurotypical people may find easy to navigate, these kind of conclusions resonate with many popular myths around autism.”
However, the researchers note that the individuals interviewed as part of this research did not mention ‘rules-based interactions’: the findings of this study place emphasis rather on the community, creativity, and “creation of safe spaces where players can take social risks”. Autistic individuals described TTRPG environments as “fostering authenticity, connection, and inclusion, helping reduce feelings of exclusion”, challenging the stereotyped notion that games like Dungeons & Dragons appeal to autistic young people because of autistic trait-based affinity for rules based interactions and structured, turn-taking social interactions.
This study is an importance example of the autistic voice within research. The autistic community, and indeed disability activists and advocates in the greater sense, have called for an approach to research that prioritises participatory methods. The “Nothing About Us Without Us” movement calls for the inclusion of autistic individuals as more than passive subjects, but rather recognition of autistic participants as consenting collaborators within research with unique experiences and perspectives.
School experiences of autistic students
An example of this can be found in the work of Joanne McCulloch. Joanne is researching the school experiences of autistic students. Joanne’s research highlights the highly individualised ways in which autistic students interact with their school environment, experience challenges at school and draw on resources to support their wellbeing.
Joanne’s research, which was designed with diverse communication methods in mind, highlights the benefits of adopting accessible methodologies in data collection that are inclusive of the wide range of communication styles within the autistic community.
The findings demonstrate the need for more inclusive research methodological approaches that aim to explore the lived experiences of participants who express themselves in ways that may challenge more ‘traditional’ methods…
“Research often focuses on gaining views from participants and I wanted to design a study that could include participants who may not respond to direct communication and express themselves largely through their behaviour because this group is underrepresented in research.”
Autism-related language online
Luke McFarline also adopted unique methods to complete his PhD when he examined the use of autism-related language online. Luke analysed over 42,000 Twitch messages and 2,900 tweets, alongside a survey of over 300 participants and follow-up focus groups, in an investigation of how terms like “autistic” are used as insults, jokes, or memes online.
Negative and sarcastic uses are widespread and often normalised… diagnostic terms are used as shorthand for failure or awkwardness.
Findings from the study survey and subsequent focus groups revealed that whilst some participants were accepting of the term “autistic” and those like it being used as a joke or insult, finding it humorous, others reported it to be harmful or exclusionary. Luke’s research calls attention to cultural attitudes towards autism and the ongoing requirement for autism awareness and acceptance, as well as the impact of a lack of public understanding or acceptance of autism.
Further Information
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