Community connectedness as a buffer against the effects of minority stress on mental health in the autistic population.

Lead Research Organisation: University of Stirling
Department Name: Psychology

Abstract

On average, autistic individuals die twenty-years before non-autistic individuals and one of the leading causes of death is suicide (Hirvikoski et al., 2016). Autistic individuals are also more likely to have depression and anxiety (Gillberg et al., 2016). To date, a substantial amount of research has assumed that poor mental health is inevitable in autistic people (Barnbaum, 2008; Mikami et al., 2009). Relatively little research has focused on how social stress such as discrimination and stigma may be affecting mental health for autistic people, nor protective factors (such as community connectedness). The minority stress model suggests that marginalised groups experience additional stress from discrimination, stigma and marginalisation which leads to health disparities (Meyer, 2003). The minority stress model further suggests that community connectedness (i.e., feeling part of and connected to your community) may give people a form of group-based resilience (Meyer, 2015). As such, this research aimed to investigate whether we can use the minority stress model (Meyer, 2003) for understanding the mental health disparity in the autistic population (Botha & Frost, 2018).

A series of studies found that the disparity in mental health between autistic and non-autistic people cannot be explained by general life stress (the kind of stress everyone is exposed to), nor other demographics (such as sexuality, socio-economic status, ethnicity, and gender). Rather, exposure to discrimination and stigma explained most of the mental health and wellbeing of autistic people, whereby more experiences of discrimination and stigma predicted lower wellbeing and higher psychological distress. Being connected to the autistic community lessened the impact of minority stress on mental health (in general). When tested longitudinally, increased exposure to minority stress was associated with significantly worse mental health, while higher autistic community connectedness related to significantly better mental health and wellbeing. These findings indicate that poor mental health in autism is not inevitable, and that instead, it is the result of complicated social processes. This body of work was the first to provide a theoretical and empirical model explaining the disparity in autistic mental health. Furthermore, it was the first to study the effects of stigma and discrimination, or autistic community connectedness on the mental health of autistic people longitudinally.

The aim of this fellowship would be to consolidate my PhD and research through the delivery of an ambitious, but achievable programme of research-career affirming activities preparing me for the next stages of my academic career. Over the course of the fellowship I aim to publish this series of studies on mental health and minority stress, to disseminate their findings to maximise impact and engagement (nationally and internationally), expand my research network, further develop specific skills with R programming, carry out limited further research on autism and dehumanisation, and prepare grant applications to continue this important line of research. The objectives of the fellowship all gear towards maximising impact and engagement with the research itself, but also aim to facilitate the establishment of my career. For example, the publication and dissemination of this research will increase the visibility of my research profile, maximise the impact of this vital work on autism, stigma and mental health, while further research, network growth, skills developmental, and grant preparation activities all aim to increase my capacity for a successful academic career.

People

ORCID iD

Publications

10 25 50

 
Description As part of this award, I conducted a mixed-method study on ableism in autism research, with a particular focus on dehumanization (denial of the full humanness of autistic people), objectification (treating autistic people like objects), and stigmatisation (othering autistic people, and putting them in a status below non-autistic people), and to investigate whether involving autistic people more deeply in research relates to less ableist narratives from autism researchers. This is important because autism research has been said to have a problem with ableism. Results indicate that involving autistic people more deeply with research relates to a lower odds of ableism in researchers narratives about autistic people. This is a powerful finding that adds to a body of knowledge demonstrating the importance of having autistic people embedded at all levels of research to create more rigorous and humanizing autism science.

This also opens up new research avenues about meta-science and autism, and how we can improve the rigor of the field. Further, the project and award resulted in the creation of the Stigma and Autism and Research Network (SARN), alongside other academics, autistic people, and practitioner to directly challenge the stigmatising ways in which autistic people are treated both in wider society, and specifically in research.
Exploitation Route This research will help to change the way that autistic people are talked about, and challenge the core ableism that is wrapped up in the construction of autistic people. It will seed an area of research (meta-science of autism research), as well as provide a base for policy change around how autistic people are involved in research. It can inform publishing guidelines around the language used to describe autsitic people (to prevent their dehumanization, objectification, and stigmatisation), as well as provide the beginning of an empirical base of evidence for the outcomes of including autistic people in research.
Sectors Communities and Social Services/Policy

Other

 
Description Details of emerging economic and societal impact arising from the award that you are reporting on (including how it has evolved) There are clear impacts from the work that have come from this grant. Firstly, the grant facilitated my participation in the International Society for Autism Research alongside other world-leading academics doing research into autism and stigma. The panel (which the grant funded my participation in), received wide-spread attention and discussion both at the event and afterwards on social media. The immense interest. This panel precipitated the formation of the Stigma and Autism research Network (SARN) alongside Dr Eilidh Cage, and others. By forming this network, we have brought together close to 200 autistic people are/or autism researchers who are aiming to tackle stigma, victimisation, and prejudice against autistic people across multiple settings including within schools, workplaces, healthcare, universities, and in the general population. The network organises talks for every second month with guest speakers and facilitated the formation of special interest groups tackling these issues. Multiple projects have spawned from this network, including one which will be co-creating a guide to the best language to use to avoid the stigmatisation of autistic people in research for journals. It is being co-created alongside autistic people. Further to this, a paper which was published as part of the project (an eight-year autoethnography) has been received exceptionally well, with an AltMetric impact score of 384, putting it in the 99th percentile compared with other publications of the same age. It has been read just under 19000 times in six months and is being used on curricula in both the US and the UK on autism qualifications. The work being written-up for publication with the support of this grant, as well as the novel research conducted during the grants lifespan has had impact on private, public, and practice settings. For example, the work on community connectedness is being used to inform peer support services as well as post-diagnostic services for autistic people to support wellbeing and mental health. The social value of research like this cannot be overstated, given the health and wellbeing disparities faced by the autistic community. Further the work on the dehumanization in the field of autism research has sparked and added to a growing field of research tackling meta-aspects of autism research such as how it is conducted, and who is conducting it. There were multiple hurdles to overcome including a disruption due to COVID-19. It was no longer possible to visit either of the international institutions or academics that were due to support me in my role. Despite this, we made use of technology for overcoming some degree of this. Despite this, it would have been invaluable. Further, there has been a delay on publications and impact due to needing to take COVID19 related leave.
First Year Of Impact 2021
Sector Education,Healthcare,Other
Impact Types Cultural

Societal

Policy & public services

 
Description Cited in Nova Scotias Accessibility Act
Geographic Reach North America 
Policy Influence Type Citation in other policy documents
Impact The Nova Scotia accessibility act changes the landscape of legal rights for disabled people in Canada
URL https://novascotia.ca/accessibility/docs/accessibility-act-review-report.pdf
 
Description Developing a code of conduct for autism research at a departmental level.
Geographic Reach Local/Municipal/Regional 
Policy Influence Type Influenced training of practitioners or researchers
Impact In collaboration with other researchers, I helped to inform the practice and procedures of the Stirling Autism research group through the code of conduct which is used to train and inform undergraduate, postgraduate, and new members of staff to the research team. It has increased the knowledgability, and cultural competance of those engaging with autism research to ensure higher ethical quality of research and practice.
 
Description Policy Advice Paper from National Council for Special Education Ireland
Geographic Reach Europe 
Policy Influence Type Citation in other policy documents
Impact It is too soon to tell.
URL https://ncse.ie/wp-content/uploads/2024/01/Inclusive-Education-for-an-Inclusive-Society.pdf
 
Description UK Parliament Select Committee Publications citation from UCL Centre for Research in Autism and Education (CRAE) (ALN0033)
Geographic Reach National 
Policy Influence Type Citation in other policy documents
Impact To soon to tell.
URL https://committees.parliament.uk/writtenevidence/118880/pdf/
 
Description Leverhulme Early Career Fellowship
Amount £11,667,900 (GBP)
Organisation The Leverhulme Trust 
Sector Charity/Non Profit
Country United Kingdom
Start 01/2022 
End 12/2024
 
Description Travel award
Amount $280 (USD)
Organisation International Society for Autism Research (INSAR) 
Sector Academic/University
Country Global
Start 04/2021 
End 05/2021
 
Description Cross-institutional partnership with University of Sunderland and University of Bristol 
Organisation University of Bristol
Country United Kingdom 
Sector Academic/University 
PI Contribution Created a collaboration with Dr Amy Pearson conducting research on autistic peoples experiences of interpersonal victimisation, and how autistic people may use (or not) support services post victimisation. I was a co-investigator bringing knowledge of stigma, minority stress, and mental health. This partnership also includes the University of Bristol.
Collaborator Contribution Dr Amy Pearson brings expertise on interpersonal victimisation, masking, and mental health. She is PI on the project and collaboration, and lead the process of recieving funding.
Impact Recieved funding from the UKRI Victimisation Abuse and mental health health network to understand interpersonal victimisation of autistic people with University of Sunderland (Dr Amy Pearson) as PI, and University of Stirling (Dr Monique Botha) as CO-I, alongisde University of Bristol (Dr Felicity Sedgewick), Sarah Douglas, and Kieran Rose,
Start Year 2021
 
Description Cross-institutional partnership with University of Sunderland and University of Bristol 
Organisation University of Sunderland
Country United Kingdom 
Sector Academic/University 
PI Contribution Created a collaboration with Dr Amy Pearson conducting research on autistic peoples experiences of interpersonal victimisation, and how autistic people may use (or not) support services post victimisation. I was a co-investigator bringing knowledge of stigma, minority stress, and mental health. This partnership also includes the University of Bristol.
Collaborator Contribution Dr Amy Pearson brings expertise on interpersonal victimisation, masking, and mental health. She is PI on the project and collaboration, and lead the process of recieving funding.
Impact Recieved funding from the UKRI Victimisation Abuse and mental health health network to understand interpersonal victimisation of autistic people with University of Sunderland (Dr Amy Pearson) as PI, and University of Stirling (Dr Monique Botha) as CO-I, alongisde University of Bristol (Dr Felicity Sedgewick), Sarah Douglas, and Kieran Rose,
Start Year 2021
 
Description Journal Club talk on a paper published during grant period (autoethnography) 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Other audiences
Results and Impact Presented research developed during the postdoctoral fellowship to the Edge Hill university social science journal club. It was a good opportunity for showing casing the work that the ESRC postdoctoral fellowship facilitated as well as creating new research collaborations.
Year(s) Of Engagement Activity 2022
 
Description NHS Lothian Paediatrician Round table speaker 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Presentation delivered to the NHS Lothian Paediatrician Roundtable. Presentation entitled: Neurodiversity, minority stress, and mental health: a social-ecological approach to young autistic peoples mental health. Between 20-30 staff memebers from the professional network attended the talk, and the Q&A after.
Year(s) Of Engagement Activity 2021
 
Description North East Autism society Autism Awareness week conference 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Patients, carers and/or patient groups
Results and Impact Acceptance Matters virtual conference held by the North East Autism society with 503 unique attendees. 302 were parents or carers of autistic people, some of whom are autistic themselves, and the other 201 were professionals and or policy makers. I provided a talk on minority stress, identity, and mental health for autistic young people, and made recommendations for fostering good mental health and positive identity. People took part from the United Kingdon, Croatia, Spain, Hong Kong, United Arab Emirates, Greece, Canada, and the United States of America. Of the people who took part in the post conference feedback (N=75), 100% found the conference useful, while 80% reported a little or lot of a change in their conceptualisations of autism, mental health, and wellbeing.It was also covered by regional media (The Northern Echo).
Year(s) Of Engagement Activity 2021
URL https://www.ne-as.org.uk/acceptance-matters
 
Description Podcast appearance on Two Sides of The Spectrum 
Form Of Engagement Activity A broadcast e.g. TV/radio/film/podcast (other than news/press)
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact This research public engagement event was a broadcast based on the research of the fellowship and the research the fellowship gave me time to write up and disseminate. It reached a considerable audience, with estimates at about 10000 people.
Year(s) Of Engagement Activity 2023
URL https://open.spotify.com/episode/67N5dTXJXy2apFoKKukdzY?si=xw4gALkbSy6AyK0xAHRG9g
 
Description Podcast interview: Aucademy 
Form Of Engagement Activity A broadcast e.g. TV/radio/film/podcast (other than news/press)
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact Aucademy is an ongoing public engagement project aimed at teaching the public about autism and the latest research. I had segment with Aucademy where I discussed minority stress, autistic community connectedness, and identity research in relation to mental health. It has a following of more than 5000 people, and reaches a lot of autistic people, their families, and autism professionals. Roughly 150-200 people watched the live stream when the podcast aired, while a further 700 people have watched the video on youtube.
Year(s) Of Engagement Activity 2021
URL https://www.youtube.com/watch?v=Ijap1yOBVd0
 
Description Radio interview: Sirius XM - interview about research on autism, mental health, minority stress, and community connectedness. 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact The aim of this activity (media broadcast) was to widen my scope as an outward facing academic, to demonstrate the public policy, and applied nature of my research, and its important real world impact. Furthermore, it aimed to translate complex, often abstract concepts into educational soundbites that can further educate the public on autism and mental health in an accessible and lasting way. The radio reported high interest in it.
Year(s) Of Engagement Activity 2021
URL https://www.byuradio.org/1428cd5b-f868-42b6-a73a-2599c0d3fca1
 
Description School training for parents and teachers on neurodiversity and mental health 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Schools
Results and Impact Conducted a seminar for a training programme for Selkirk High school organised jointly by Selkirk High School and The Harris Trust and facilitated by the Salvesen Mindroom Research Centre. My segment was on the role of neurodiversity for mental health and autism. It is being used to shape policies for how the school facilitates autistic children and young people. The original talk reached roughly 50 people, while the recording has been viewed 690 times on Youtube to date.
Year(s) Of Engagement Activity 2021
URL https://www.youtube.com/watch?v=zX8cpVhFwkQ
 
Description University of Edinurgh Psychiatry journal club talk 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Other audiences
Results and Impact Dissemniated my research amongst a wide network of other researchers including PhD students, early career researchers, and established professors. It sparked interesting discussions, and future collaborations!
Year(s) Of Engagement Activity 2021