Improving communication between autistic and non-autistic individuals
Lead Research Organisation:
University of Brighton
Department Name: Sch of Applied Social Sciences
Abstract
Autistic people often experience difficulties with social communication. It is so common, in fact, that is it one of the central criteria for an autism diagnosis (see: DSM-5 criteria, APA, 2013). Social communication difficulties impact all areas of life and can contribute to things such as poor mental health outcomes and reduced opportunities for fulfilling social interactions as well as barriers to health and social care, education and employment.
For a long time, researchers have thought that these difficulties are due to autistic cognitive and social 'deficits'. When autism is seen as a disorder in this way, autistic people are thought of as not being able to communicate 'normally'. However, autism is now increasingly also thought of as a form of "neurodivergence" i.e. one particular way of being that is 'different, not less' to the majority (Fletcher-Watson and Happé, 2019: 23).
Because issues around autistic communication are so important, they were identified as a top priority for autism research by stakeholders in the most recent independent priority-setting report (James Lind Alliance Priority Setting Partnership, in Cusack and Sterry, 2016: 6). Despite this, however, they remain 'relatively little studied' (Happé and Frith, 2020: 12).
This fellowship will widely share and build on the findings of my PhD research, which applied a fresh, emancipatory perspective to a cognitive linguistic study of autistic social communication. A theory called the double empathy problem (Milton, 2012) argues that non-autistic people have just as much trouble understanding autistic people, and that problems of mutual understanding between autistic and non-autistic speakers is best thought of as a two-way affair. My research takes the double empathy problem as its starting point and tries to provide an explanation, in technical cognitive linguistic terms using relevance theory (Sperber and Wilson 1986/1995), for why mutual understanding can sometimes break down.
The proposed activities of the fellowship centre around three key outputs, each designed with accessibility and meaningful stakeholder engagement in mind. While the primary aim is to maximise impact of the research itself on social policy and engagement with a broader autdience, these activities will also facilitate and support my development as an Early Career Researcher and prepare me for a successful academic career in Social Policy-oriented research.
Planned activities:
1) To establish and work in partnership with a stakeholder Advisory Group to coproduce a set of recommendations or guidance notes around best practice for communication between autistic and non-autistic speakers, specifically in health and social care settings. We will collectively consider an output strategy for our findings, so that they have the greatest chance possible of being embedded within the UK's forthcoming National Strategy for Disabled People.
2) To write and publish a public science-style monograph, written for a general readership, that presents the novel theoretical contributions from my PhD research. The publication and dissemination of this research will increase the visibility of my research profile while maximising the impact of this vital work on autistic verbal communication on social policy.
3) To work coproductively with a local community organisation, Figment Arts, to create a series of short, animated 'explainer' videos, presenting the empirical findings of my research in an engaging and accessible way. Figment Arts will support a small group of local autistic artists to learn animation skills and to illustrate, plan and make the videos. These will be designed to be shared widely online, via social media, and will also be posted to the dedicated project webpage, hosted on the established Boingboing website.
For a long time, researchers have thought that these difficulties are due to autistic cognitive and social 'deficits'. When autism is seen as a disorder in this way, autistic people are thought of as not being able to communicate 'normally'. However, autism is now increasingly also thought of as a form of "neurodivergence" i.e. one particular way of being that is 'different, not less' to the majority (Fletcher-Watson and Happé, 2019: 23).
Because issues around autistic communication are so important, they were identified as a top priority for autism research by stakeholders in the most recent independent priority-setting report (James Lind Alliance Priority Setting Partnership, in Cusack and Sterry, 2016: 6). Despite this, however, they remain 'relatively little studied' (Happé and Frith, 2020: 12).
This fellowship will widely share and build on the findings of my PhD research, which applied a fresh, emancipatory perspective to a cognitive linguistic study of autistic social communication. A theory called the double empathy problem (Milton, 2012) argues that non-autistic people have just as much trouble understanding autistic people, and that problems of mutual understanding between autistic and non-autistic speakers is best thought of as a two-way affair. My research takes the double empathy problem as its starting point and tries to provide an explanation, in technical cognitive linguistic terms using relevance theory (Sperber and Wilson 1986/1995), for why mutual understanding can sometimes break down.
The proposed activities of the fellowship centre around three key outputs, each designed with accessibility and meaningful stakeholder engagement in mind. While the primary aim is to maximise impact of the research itself on social policy and engagement with a broader autdience, these activities will also facilitate and support my development as an Early Career Researcher and prepare me for a successful academic career in Social Policy-oriented research.
Planned activities:
1) To establish and work in partnership with a stakeholder Advisory Group to coproduce a set of recommendations or guidance notes around best practice for communication between autistic and non-autistic speakers, specifically in health and social care settings. We will collectively consider an output strategy for our findings, so that they have the greatest chance possible of being embedded within the UK's forthcoming National Strategy for Disabled People.
2) To write and publish a public science-style monograph, written for a general readership, that presents the novel theoretical contributions from my PhD research. The publication and dissemination of this research will increase the visibility of my research profile while maximising the impact of this vital work on autistic verbal communication on social policy.
3) To work coproductively with a local community organisation, Figment Arts, to create a series of short, animated 'explainer' videos, presenting the empirical findings of my research in an engaging and accessible way. Figment Arts will support a small group of local autistic artists to learn animation skills and to illustrate, plan and make the videos. These will be designed to be shared widely online, via social media, and will also be posted to the dedicated project webpage, hosted on the established Boingboing website.
Organisations
- University of Brighton (Fellow, Lead Research Organisation)
- NHS England (Collaboration)
- SHEFFIELD HALLAM UNIVERSITY (Collaboration)
- Royal College of Midwives (Collaboration)
- University of Hertfordshire (Collaboration)
- London South Bank University (Collaboration)
- UNIVERSITY OF STRATHCLYDE (Collaboration)
- University of East Anglia (Collaboration)
- BuroHappold Engineering (Collaboration)
- Cornwall Partnership NHS Foundation Trust (Collaboration)
- EDGE HILL UNIVERSITY (Collaboration)
- Suffolk University (Collaboration)
- National Development Team for Inclusion NDTi (Collaboration)
- UNIVERSITY OF BIRMINGHAM (Collaboration)
- SWANSEA UNIVERSITY (Collaboration)
People |
ORCID iD |
| Gemma Williams (Principal Investigator / Fellow) |
Publications
Proff I
(2022)
Sensory processing in autism across exteroceptive and interoceptive domains.
in Psychology & Neuroscience
Williams G
(2023)
Improving the Sensory Environments of Mental Health in-patient Facilities for Autistic Children and Young People
in Child Care in Practice
| Title | 'Bear' by Ryan Medlock |
| Description | Figment Arts worked with autistic academic Dr Gemma Williams to respond to her research into autistic communication and loneliness. We worked for around 12 months with a group of autistic artists to develop and produce some creative responses to the research. The resulting films are presented here, alongside an 'explainer' video which shows how Gemma conducted her research. This ''Bear' video by Ryan Medlock explores being autistic in different social environments. |
| Type Of Art | Film/Video/Animation |
| Year Produced | 2022 |
| Impact | The videos were We launched the films in Blackpool at the International Resilience Conference and in Brighton at the Rose Hill to live audiences of 20 and 45, respectively. The videos have been shared on social media and reached a wide audience. The artists involved developed their creative skills and had supported opportunities to communicate with the public about their work. Several media impact outputs resulted from these vdieos- please see relevant fields for further details. |
| URL | https://vimeo.com/744629681?embedded=true&source=video_title&owner=3258971 |
| Title | 'Cafe Faux Pas' by Eleana Re |
| Description | Figment Arts worked with autistic academic Dr Gemma Williams to respond to her research into autistic communication and loneliness. We worked for around 12 months with a group of autistic artists to develop and produce some creative responses to the research. The resulting films are presented here, alongside an 'explainer' video which shows how Gemma conducted her research. This 'Cafe Faux Pas' video by Eleana Re explores autistic communication differences and social expectations. |
| Type Of Art | Film/Video/Animation |
| Year Produced | 2022 |
| Impact | The videos were We launched the films in Blackpool at the International Resilience Conference and in Brighton at the Rose Hill to live audiences of 20 and 45, respectively. The videos have been shared on social media and reached a wide audience. The artists involved developed their creative skills and had supported opportunities to communicate with the public about their work. Several media impact outputs resulted from these vdieos- please see relevant fields for further details. |
| URL | https://figmentarts.co.uk/whatwedo/talking-together |
| Title | 'From the Station' by William Hanekom |
| Description | Figment Arts worked with autistic academic Dr Gemma Williams to respond to her research into autistic communication and loneliness. We worked for around 12 months with a group of autistic artists to develop and produce some creative responses to the research. The resulting films are presented here, alongside an 'explainer' video which shows how Gemma conducted her research. This 'From the Station' video by Will Hanekom explores themes of autistic communication, masking and special interests. |
| Type Of Art | Film/Video/Animation |
| Year Produced | 2022 |
| Impact | The videos were We launched the films in Blackpool at the International Resilience Conference and in Brighton at the Rose Hill to live audiences of 20 and 45, respectively. The videos have been shared on social media and reached a wide audience. The artists involved developed their creative skills and had supported opportunities to communicate with the public about their work. Several media impact outputs resulted from these vdieos- please see relevant fields for further details. |
| URL | https://vimeo.com/744642315?embedded=true&source=video_title&owner=3258971 |
| Title | 'Loneliness' by Debbie Caulfield |
| Description | Figment Arts worked with autistic academic Dr Gemma Williams to respond to her research into autistic communication and loneliness. We worked for around 12 months with a group of autistic artists to develop and produce some creative responses to the research. The resulting films are presented here, alongside an 'explainer' video which shows how Gemma conducted her research. This 'Loneliness' video by Debbie Caulfield explores experiences of loneliness and thinks about how to address it. |
| Type Of Art | Film/Video/Animation |
| Year Produced | 2022 |
| Impact | The videos were We launched the films in Blackpool at the International Resilience Conference and in Brighton at the Rose Hill to live audiences of 20 and 45, respectively. The videos have been shared on social media and reached a wide audience. The artists involved developed their creative skills and had supported opportunities to communicate with the public about their work. Several media impact outputs resulted from these vdieos- please see relevant fields for further details. |
| URL | https://vimeo.com/748741868?embedded=true&source=video_title&owner=3258971 |
| Title | Talking Together - explainer video |
| Description | Figment Arts worked with autistic academic Dr Gemma Williams to respond to her research into autistic communication and loneliness. We worked for around 12 months with a group of autistic artists to develop and produce some creative responses to the research. The resulting films are presented here, alongside an 'explainer' video which shows how Gemma conducted her research. This 'Talking Together' video explains the research project Talking Together, how Gemma undertook the research and some of the findings from her work. |
| Type Of Art | Film/Video/Animation |
| Year Produced | 2022 |
| Impact | The videos were We launched the films in Blackpool at the International Resilience Conference and in Brighton at the Rose Hill to live audiences of 20 and 45, respectively. The videos have been shared on social media and reached a wide audience. The artists involved developed their creative skills and had supported opportunities to communicate with the public about their work. Several media impact outputs resulted from these vdieos- please see relevant fields for further details. |
| URL | https://vimeo.com/744545080?embedded=true&source=video_title&owner=3258971 |
| Description | Due to a short extension to account for some surgery/ sick leave, the award period is currently still live (end 24th Feb). As such, it will likely be the next reporting window that impact is easiest to assess. Impacts so far include: The key output report (More Than Words) generated co-productively during this fellowship has already had many ripple effects on policy and practice. It is hosted on the NHS Futures Platform as a example of excellent practice and has been shared through the NHS South East regional director teams as Blackpool Council as a basis of anticipatory and reasonable adjustments. The contents have been reworked into an NHS London Redion-commissioned training video, co-ordinated by LSBU for GPs. As documented in the relevant fields of this form, it has also been shared widely among numerous professional bodies and to all medical schools within the UK. Lay co-productive contributors expressed finding the experience extremely rewarding, and some have gone on to deliver further training (e.g. to Approved Mental Health Professionals) on the back of the project. In terms of creative outputs, as documented elsewhere this fellowshpi has generated a suite of accessible animated videos. This video project, in addition to creating quality outputs, has supported the artistic and professional development of a number of neurodivergent and learning disabled artists. Over the year they had the opportuntiy to learn and practice new artistic skills, network and build connections, present their work at an international conference and a local celebration event, and have been invited to share and present thier work at an upcoming curated show in London later this year. In additional, this fellowship has enabled the development of a number of productive networks- resulting in grant applications for future research and collaboration on publications still in progress or pending review / in press. The monograph is underway and awaiting response from the target publisher. |
| First Year Of Impact | 2022 |
| Sector | Environment,Healthcare,Culture, Heritage, Museums and Collections |
| Impact Types | Societal |
| Description | "More than words: Supporting effective communication with autistic people in health care settings" |
| Geographic Reach | National |
| Policy Influence Type | Contribution to new or improved professional practice |
| Impact | In the short time since its launch at an NHSE South East Best Practice conference on 6th October 2022, it has already received an internal NHS Excellence Report (#205238) within the local Sussex Partnership Trust, has been picked up by the National Autism Implementation Team in Scotland (a cross sector partnership designed to support delivery of the Scottish Strategy for Autism) and Spectrum News (the leading American autism research news site), has been adopted by the UK Medical Schools Council and shared to all 44 medical schools around the UK, included in the UK Council of Deans Policy Bulletin and is live on the NHS Futures platform as an example of Best Practice. Blackpool Council Local Authority have taken it up to share with their Health and Social Care teams. All undergraduate and postgraduate Social Work courses at the University of Brighton and the University of Sussex are using it, as is the Brighton and Sussex Medical School. It is hosted on //medschoolpsychiatry.com/ as an example of good practice, has been shared with Association of Palliative Care Social Workers and Hospice UK members, included in Council of Deans' policy bulletin to members and added to the members' only site of the Chartered Society of Physiotherapy as a recommended resource in the Learning Disability network. We have received lots of feedback from individual clinical professionals and medical educators that this is an excellent and impactful resource. |
| URL | https://www.england.nhs.uk/south-east/wp-content/uploads/sites/45/2022/10/More-than-words-supporting... |
| Description | Autism Strategic Event, Blackpool Council Autism Partnership Board. |
| Geographic Reach | Local/Municipal/Regional |
| Policy Influence Type | Participation in a guidance/advisory committee |
| Impact | The Director of Adult Services at Blackpool Council has said "Similarly, Gemma's research findings are very powerful and clear, and I have already shared with colleagues who are proposing to develop a bed based service for autistic people and adults with Learning Disability, and asked that autistic people are included from the outset in the design of both the environment and the service delivery, and not just be consulted on a draft product. This fits brilliantly well with what the Lancs and South Cumbria strategy is clear needs to happen." Content from the talk has also been fed into the developing Blackpool Ambition for Autistic People. |
| URL | https://www.youtube.com/watch?v=3qtCFlGjoTU&list=PL14mH1rV2nUGnyD4onIebd-SkWnW_yBwT&index=8 |
| Description | Submission of evidence: Children and Families Act 2014, for the House of Lords Select Committee, 25/04/2022 |
| Geographic Reach | National |
| Policy Influence Type | Contribution to a national consultation/review |
| Impact | In our submission to the House of Lords' inquiry into the Children and Families Act 2014 on the 25th April we recommended a specific review of how SEND provisions in schools were being experienced. We also asked for accessible versions of policy content to be made available to allow young people and parents/carers to engage with consultations. Although the full report is not yet out, we are thrilled that one of recommendations from this submission has been taken up. On 29th March the Department of Education launched a review of SEND (still open for submissions so we encourage children, young people and parents/carers to write in directly). This specifically asks for the views of young people & parents/carers with content available in lots of formats, for example large font and easy read. They even made a hand-out sheet for professionals working with these groups to tell them about what the policy means. |
| URL | https://www.boingboing.org.uk/children_act_submission/ |
| Description | Submission of evidence: Government consultation on the SEND review Green Paper |
| Geographic Reach | National |
| Policy Influence Type | Contribution to a national consultation/review |
| URL | https://www.gov.uk/government/consultations/send-review-right-support-right-place-right-time |
| Description | Technical Note: Sensory Friendly LED Lighting for Healthcare Environments |
| Geographic Reach | National |
| Policy Influence Type | Citation in other policy documents |
| Impact | This Technical Note has been shared widely among NHS clinical and estates colleagues. Our Technical Note has also been reported on in the Institute for Lighting Professional's monthly journal (https://issuu.com/theilp/docs/lighting_journal_-_jul_aug/38), in the Society of Light and Lighting 'Light Lines' journal (https://issuu.com/matrixprint/docs/sll_light_lines_nov_dec_2022?fr=sNTBlZjUzNTQyMzk), and included in the British Standards Institute Fast-track Standard PAS 6463:2022: Design for the mind. Neurodiversity and the built environment. |
| URL | https://issuu.com/theilp/docs/lighting_journal_-_jul_aug/38 |
| Description | Developing Your Creative Practice Award |
| Amount | £7,632 (GBP) |
| Funding ID | DYCP-00579886-R15-SE- |
| Organisation | Arts Council England |
| Sector | Public |
| Country | United Kingdom |
| Start | 01/2023 |
| End | 12/2023 |
| Description | Moving on Up - Neurodiversity Research |
| Amount | £16,400 (GBP) |
| Organisation | East Sussex County Council |
| Sector | Public |
| Country | United Kingdom |
| Start | 12/2022 |
| End | 03/2023 |
| Description | MRC Neurodovergence and Disordered Eating research project proposal |
| Organisation | London South Bank University |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Expertise and intellectual input, grant application management. |
| Collaborator Contribution | Expertise and intellectual input, grant application management. |
| Impact | Application to the Medical Research Council "New Collaboration to support Eating Disorders Research 2022" call. Project aims 1. The main purpose of this project is to forge a new, interdisciplinary and multi-institutional 'insider' research collaboration focused on disordered eating and neurodivergence. First and foremost, we aim to bring together a team of insider researchers, with lived experience of both neurodivergence and disordered eating, who have track records of success in researching neurodivergence more broadly. Through forming this team, we aim to bring our background skillsets, lived experience, and positive reputations within the neurodivergent community, to the field of 'eating disorders' research. Through focusing our team on the proposed project, we aim to form a lasting collaboration, which will generate and strengthen ties between our team and our wider institutions across the three years. This aims to open the door to future research and advocacy together in this important area. We will focus our activities around four objectives (obj). 2. The project itself will be hypothetico-inductive rather than traditional hypothesis testing. The overall aim is to generate hypotheses related to the co-occurrence of neurodivergence, disordered eating, physical health differences, and other intersectional phenomena. This will inform a conceptual model that will be rigorously tested in future costed work conducted by this novel, interdisciplinary collaboration that will be uniquely positioned with leading edge expertise in this area. Awaiting results of application process. |
| Start Year | 2022 |
| Description | Maternity Autism Research Group (MARG) - Health Professionals and Autistic Researchers working together to improve maternity care for Autistic women and people in the UK. |
| Organisation | Edge Hill University |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Contribution of expertise, intellectual input and involvement in setting up this new research network. |
| Collaborator Contribution | Contribution of expertise, intellectual input and involvement in setting up this new research network. |
| Impact | This new network is in its early stages. Aim To improve the experiences of Autistic people accessing services related to pregnancy and early parenting by signposting information and resources. Mission Statement To act as an Autistic-led collective of health professionals and researchers committed to addressing the Autistic community's priorities around the maternity period, with the emancipation of all Autistic people at the heart of all we do. The MARG website will become an accessible and comprehensive resource for the latest high-quality research, information, resources and training relating to pregnancy and maternity for Autistic people. Objectives To host and signpost neurodiversity-positive research, resources and evidence-based tools relating to Autistic people, pregnancy and maternity, to benefit Autistic people during pregnancy and early parenting. To raise the profile and improve understanding of Autistic peoples' needs during maternity and how to implement these within the NHS and beyond. To signpost Autistic led training, consultancy, and doula services. To provide a research group for Autistic researchers and health professionals to discuss advancing research in the field within social and biopsychosocial models of Autism. |
| Start Year | 2022 |
| Description | Maternity Autism Research Group (MARG) - Health Professionals and Autistic Researchers working together to improve maternity care for Autistic women and people in the UK. |
| Organisation | Royal College of Midwives |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | Contribution of expertise, intellectual input and involvement in setting up this new research network. |
| Collaborator Contribution | Contribution of expertise, intellectual input and involvement in setting up this new research network. |
| Impact | This new network is in its early stages. Aim To improve the experiences of Autistic people accessing services related to pregnancy and early parenting by signposting information and resources. Mission Statement To act as an Autistic-led collective of health professionals and researchers committed to addressing the Autistic community's priorities around the maternity period, with the emancipation of all Autistic people at the heart of all we do. The MARG website will become an accessible and comprehensive resource for the latest high-quality research, information, resources and training relating to pregnancy and maternity for Autistic people. Objectives To host and signpost neurodiversity-positive research, resources and evidence-based tools relating to Autistic people, pregnancy and maternity, to benefit Autistic people during pregnancy and early parenting. To raise the profile and improve understanding of Autistic peoples' needs during maternity and how to implement these within the NHS and beyond. To signpost Autistic led training, consultancy, and doula services. To provide a research group for Autistic researchers and health professionals to discuss advancing research in the field within social and biopsychosocial models of Autism. |
| Start Year | 2022 |
| Description | Maternity Autism Research Group (MARG) - Health Professionals and Autistic Researchers working together to improve maternity care for Autistic women and people in the UK. |
| Organisation | Suffolk University |
| Country | United States |
| Sector | Academic/University |
| PI Contribution | Contribution of expertise, intellectual input and involvement in setting up this new research network. |
| Collaborator Contribution | Contribution of expertise, intellectual input and involvement in setting up this new research network. |
| Impact | This new network is in its early stages. Aim To improve the experiences of Autistic people accessing services related to pregnancy and early parenting by signposting information and resources. Mission Statement To act as an Autistic-led collective of health professionals and researchers committed to addressing the Autistic community's priorities around the maternity period, with the emancipation of all Autistic people at the heart of all we do. The MARG website will become an accessible and comprehensive resource for the latest high-quality research, information, resources and training relating to pregnancy and maternity for Autistic people. Objectives To host and signpost neurodiversity-positive research, resources and evidence-based tools relating to Autistic people, pregnancy and maternity, to benefit Autistic people during pregnancy and early parenting. To raise the profile and improve understanding of Autistic peoples' needs during maternity and how to implement these within the NHS and beyond. To signpost Autistic led training, consultancy, and doula services. To provide a research group for Autistic researchers and health professionals to discuss advancing research in the field within social and biopsychosocial models of Autism. |
| Start Year | 2022 |
| Description | Maternity Autism Research Group (MARG) - Health Professionals and Autistic Researchers working together to improve maternity care for Autistic women and people in the UK. |
| Organisation | Swansea University |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Contribution of expertise, intellectual input and involvement in setting up this new research network. |
| Collaborator Contribution | Contribution of expertise, intellectual input and involvement in setting up this new research network. |
| Impact | This new network is in its early stages. Aim To improve the experiences of Autistic people accessing services related to pregnancy and early parenting by signposting information and resources. Mission Statement To act as an Autistic-led collective of health professionals and researchers committed to addressing the Autistic community's priorities around the maternity period, with the emancipation of all Autistic people at the heart of all we do. The MARG website will become an accessible and comprehensive resource for the latest high-quality research, information, resources and training relating to pregnancy and maternity for Autistic people. Objectives To host and signpost neurodiversity-positive research, resources and evidence-based tools relating to Autistic people, pregnancy and maternity, to benefit Autistic people during pregnancy and early parenting. To raise the profile and improve understanding of Autistic peoples' needs during maternity and how to implement these within the NHS and beyond. To signpost Autistic led training, consultancy, and doula services. To provide a research group for Autistic researchers and health professionals to discuss advancing research in the field within social and biopsychosocial models of Autism. |
| Start Year | 2022 |
| Description | Maternity Autism Research Group (MARG) - Health Professionals and Autistic Researchers working together to improve maternity care for Autistic women and people in the UK. |
| Organisation | University of Birmingham |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Contribution of expertise, intellectual input and involvement in setting up this new research network. |
| Collaborator Contribution | Contribution of expertise, intellectual input and involvement in setting up this new research network. |
| Impact | This new network is in its early stages. Aim To improve the experiences of Autistic people accessing services related to pregnancy and early parenting by signposting information and resources. Mission Statement To act as an Autistic-led collective of health professionals and researchers committed to addressing the Autistic community's priorities around the maternity period, with the emancipation of all Autistic people at the heart of all we do. The MARG website will become an accessible and comprehensive resource for the latest high-quality research, information, resources and training relating to pregnancy and maternity for Autistic people. Objectives To host and signpost neurodiversity-positive research, resources and evidence-based tools relating to Autistic people, pregnancy and maternity, to benefit Autistic people during pregnancy and early parenting. To raise the profile and improve understanding of Autistic peoples' needs during maternity and how to implement these within the NHS and beyond. To signpost Autistic led training, consultancy, and doula services. To provide a research group for Autistic researchers and health professionals to discuss advancing research in the field within social and biopsychosocial models of Autism. |
| Start Year | 2022 |
| Description | Maternity Autism Research Group (MARG) - Health Professionals and Autistic Researchers working together to improve maternity care for Autistic women and people in the UK. |
| Organisation | University of East Anglia |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Contribution of expertise, intellectual input and involvement in setting up this new research network. |
| Collaborator Contribution | Contribution of expertise, intellectual input and involvement in setting up this new research network. |
| Impact | This new network is in its early stages. Aim To improve the experiences of Autistic people accessing services related to pregnancy and early parenting by signposting information and resources. Mission Statement To act as an Autistic-led collective of health professionals and researchers committed to addressing the Autistic community's priorities around the maternity period, with the emancipation of all Autistic people at the heart of all we do. The MARG website will become an accessible and comprehensive resource for the latest high-quality research, information, resources and training relating to pregnancy and maternity for Autistic people. Objectives To host and signpost neurodiversity-positive research, resources and evidence-based tools relating to Autistic people, pregnancy and maternity, to benefit Autistic people during pregnancy and early parenting. To raise the profile and improve understanding of Autistic peoples' needs during maternity and how to implement these within the NHS and beyond. To signpost Autistic led training, consultancy, and doula services. To provide a research group for Autistic researchers and health professionals to discuss advancing research in the field within social and biopsychosocial models of Autism. |
| Start Year | 2022 |
| Description | Maternity Autism Research Group (MARG) - Health Professionals and Autistic Researchers working together to improve maternity care for Autistic women and people in the UK. |
| Organisation | University of Hertfordshire |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Contribution of expertise, intellectual input and involvement in setting up this new research network. |
| Collaborator Contribution | Contribution of expertise, intellectual input and involvement in setting up this new research network. |
| Impact | This new network is in its early stages. Aim To improve the experiences of Autistic people accessing services related to pregnancy and early parenting by signposting information and resources. Mission Statement To act as an Autistic-led collective of health professionals and researchers committed to addressing the Autistic community's priorities around the maternity period, with the emancipation of all Autistic people at the heart of all we do. The MARG website will become an accessible and comprehensive resource for the latest high-quality research, information, resources and training relating to pregnancy and maternity for Autistic people. Objectives To host and signpost neurodiversity-positive research, resources and evidence-based tools relating to Autistic people, pregnancy and maternity, to benefit Autistic people during pregnancy and early parenting. To raise the profile and improve understanding of Autistic peoples' needs during maternity and how to implement these within the NHS and beyond. To signpost Autistic led training, consultancy, and doula services. To provide a research group for Autistic researchers and health professionals to discuss advancing research in the field within social and biopsychosocial models of Autism. |
| Start Year | 2022 |
| Description | Maternity Autism Research Group (MARG) - Health Professionals and Autistic Researchers working together to improve maternity care for Autistic women and people in the UK. |
| Organisation | University of Strathclyde |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Contribution of expertise, intellectual input and involvement in setting up this new research network. |
| Collaborator Contribution | Contribution of expertise, intellectual input and involvement in setting up this new research network. |
| Impact | This new network is in its early stages. Aim To improve the experiences of Autistic people accessing services related to pregnancy and early parenting by signposting information and resources. Mission Statement To act as an Autistic-led collective of health professionals and researchers committed to addressing the Autistic community's priorities around the maternity period, with the emancipation of all Autistic people at the heart of all we do. The MARG website will become an accessible and comprehensive resource for the latest high-quality research, information, resources and training relating to pregnancy and maternity for Autistic people. Objectives To host and signpost neurodiversity-positive research, resources and evidence-based tools relating to Autistic people, pregnancy and maternity, to benefit Autistic people during pregnancy and early parenting. To raise the profile and improve understanding of Autistic peoples' needs during maternity and how to implement these within the NHS and beyond. To signpost Autistic led training, consultancy, and doula services. To provide a research group for Autistic researchers and health professionals to discuss advancing research in the field within social and biopsychosocial models of Autism. |
| Start Year | 2022 |
| Description | NHS England-London Region GP Autism Training Project |
| Organisation | Cornwall Partnership NHS Foundation Trust |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | Expertise and intellectual input. Contribution, in-kind, of one recorded training video for GPs on 'Autism and Communication' |
| Collaborator Contribution | Expertise and intellectual input. Contributions of recorded videos, project administration. |
| Impact | A suite of 15 short training videos, commissioned by NHS England London Region, for General Practitioners about autistic patients. The CPD Training course will be hosted on the NHS Futures platform and send directly to all GPs in the region. |
| Start Year | 2022 |
| Description | NHS England-London Region GP Autism Training Project |
| Organisation | London South Bank University |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Expertise and intellectual input. Contribution, in-kind, of one recorded training video for GPs on 'Autism and Communication' |
| Collaborator Contribution | Expertise and intellectual input. Contributions of recorded videos, project administration. |
| Impact | A suite of 15 short training videos, commissioned by NHS England London Region, for General Practitioners about autistic patients. The CPD Training course will be hosted on the NHS Futures platform and send directly to all GPs in the region. |
| Start Year | 2022 |
| Description | NHS England-London Region GP Autism Training Project |
| Organisation | NHS England |
| Department | NHS England South |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | Expertise and intellectual input. Contribution, in-kind, of one recorded training video for GPs on 'Autism and Communication' |
| Collaborator Contribution | Expertise and intellectual input. Contributions of recorded videos, project administration. |
| Impact | A suite of 15 short training videos, commissioned by NHS England London Region, for General Practitioners about autistic patients. The CPD Training course will be hosted on the NHS Futures platform and send directly to all GPs in the region. |
| Start Year | 2022 |
| Description | NHS England-London Region GP Autism Training Project |
| Organisation | Sheffield Hallam University |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Expertise and intellectual input. Contribution, in-kind, of one recorded training video for GPs on 'Autism and Communication' |
| Collaborator Contribution | Expertise and intellectual input. Contributions of recorded videos, project administration. |
| Impact | A suite of 15 short training videos, commissioned by NHS England London Region, for General Practitioners about autistic patients. The CPD Training course will be hosted on the NHS Futures platform and send directly to all GPs in the region. |
| Start Year | 2022 |
| Description | Sensory Friendly LED Lighting for Healthcare Environments |
| Organisation | BuroHappold Engineering |
| Country | United Kingdom |
| Sector | Private |
| PI Contribution | Expertise and intellectual input, shared project management. |
| Collaborator Contribution | Expertise and intellectual input, shared project management. |
| Impact | Our collaborating team developed a Technical Note: Sensory Friendly LED Lighting for Healthcare Environments. This has been shared widely among NHS clinical and estates colleagues. Our Technical Note has also been reported on in the Institute for Lighting Professional's monthly journal (https://issuu.com/theilp/docs/lighting_journal_-_jul_aug/38), in the Society of Light and Lighting 'Light Lines' jounral, and included in the British Standards Institute Fast-track Standard PAS 6463:2022: Design for the mind. Neurodiversity and the built environment. |
| Start Year | 2021 |
| Description | Sensory Friendly LED Lighting for Healthcare Environments |
| Organisation | National Development Team for Inclusion NDTi |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | Expertise and intellectual input, shared project management. |
| Collaborator Contribution | Expertise and intellectual input, shared project management. |
| Impact | Our collaborating team developed a Technical Note: Sensory Friendly LED Lighting for Healthcare Environments. This has been shared widely among NHS clinical and estates colleagues. Our Technical Note has also been reported on in the Institute for Lighting Professional's monthly journal (https://issuu.com/theilp/docs/lighting_journal_-_jul_aug/38), in the Society of Light and Lighting 'Light Lines' jounral, and included in the British Standards Institute Fast-track Standard PAS 6463:2022: Design for the mind. Neurodiversity and the built environment. |
| Start Year | 2021 |
| Description | 'More Than Words' report featured on Spectrum News and its Community Newletter |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | The 'More Than Words' report was shared online after its launch. Being retweeted nearly 300 times and garnering lots of resharing and posting, it attracted attention of USA-based Spectrum News. As a result there have been further requests for the report to be hosted on practioner-led sites, and a newsletter to be written for a policy-focused professional organisation in Scotland. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.spectrumnews.org/news/community-newsletter-brain-map-communication-guide/ |
| Description | Academic Twitter account |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | This account has been sharing outputs from the award, sharing frindings from my PhD resaerch project, building research networks with international autism, disabilty and neurodiversity-focused academic colleagues, connecting with stakeholders, and developing new collaborations for articles, book chapters and future collaborative grant applications. |
| Year(s) Of Engagement Activity | 2018,2019,2020,2021,2022 |
| URL | https://twitter.com/DjzemaLouiz |
| Description | Article in FE News about the 'Talking Together' animation project |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Media (as a channel to the public) |
| Results and Impact | Article sharing the animations co-produced with Figment Arts to the Further Educational sector. The article was furhter shared on social media and as a result of this article, we were contacted and the asked if the videos could be included in a exhibition in 2023 at the Cinema Museum in London, with the autistic artists invited to go and introduce / present their work. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.fenews.co.uk/social-impact/autistic-artists-get-animated-over-loneliness-and-communicati... |
| Description | Autism Through Cinema Podcast - 'Phenomena' episode |
| 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 | Guest speaker / presenter on an episode of the Autism Through Cinema podcast, produced by the team at QMUL. Discussing an analysis of the 1985 film 'Phenomena' through an autistic / neuro-queer lens, including commentary on autistic communication and sensory experiences. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://cinemautism.podbean.com/e/phenomena-1985-dir-dario-argento/ |
| Description | Autism Through Cinema Podcast - 'Vision' episode |
| 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 | Guest speaker on the Queen Mary University-run 'Autism Through Cinema' podcast, discussing themes of neurodiversity, queerness and otherness in Margerethe Von Trotta's historical drama about the one and only Hildegard Von Bingen |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://cinemautism.podbean.com/e/vision-2009-dir-margerethe-von-trotta/ |
| Description | Blog post for National Centre for Academic and Cultural Exchange (NCACE) about the Talking Together animations project (9/11/22) |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | NCACE is a Research England-funded initiative, focused on facilitating and supporting Knowledge Exchange between HEIs and the arts and cultural sector across the UK. Guest post written for their blog about the Talking Together project with Figment Arts, posted on their website and shared in their monthly bulletin email. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://ncace.ac.uk/2022/11/07/coming-together-creatively-to-talk-about-loneliness-and-communication... |
| Description | How did you get here? South Coast Doctoral Training Partnership talk |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Postgraduate students |
| Results and Impact | Talk called 'How did you get here?' to South Coast Doctoral Training Partnership talk PhD students - online. 8th March 2022. |
| Year(s) Of Engagement Activity | 2022 |
| Description | International Resilience Revolution Conference presentation |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | Making Together: co-producing animated research-informed videos with autistic artists, with David Parker, William Hanekom, Eleana Re Abstract: When a piece of research is complete, the findings are usually published in academic journal articles. They are often written in very technical language and require an expensive subscription to read them: creating barriers to members of the public being able to access them. This seems especially unjust when research findings have relevance for people's everyday lives. If we are aiming to beat the odds while changing the odds, a theme of this conference, we need to make sure everyone can access knowledge that might help them do that. In disability activism we talk about 'nothing about us without us'. This means, among other things, that communities should be part of any conversation about them. In this talk we'll describe a collaboration between myself - an autistic academic who wanted to share my research findings- and some autistic artists working with a not-for-profit organisation called Figment Arts and then share with you some excerpts of the fantastic work in progress |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://blogs.brighton.ac.uk/rr2020/ |
| Description | Loneliness, ethical loneliness, and loneliness distress in autistic adults |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Invited talk: "Loneliness, ethical loneliness, and loneliness distress in autistic adults" (with Prof. Sarah Garfinkel) at the Tizard Centre / Participatory Autism Research Collective (PARC) Autism Journal Club (online), 2nd November 2021. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.youtube.com/watch?v=tASgSdtTlnc&list=PL14mH1rV2nUGnyD4onIebd-SkWnW_yBwT&index=7 |
| Description | NDTi Podcast Series: Talking Inclusion (Ep.16 - Autism and Ageing) |
| Form Of Engagement Activity | A broadcast e.g. TV/radio/film/podcast (other than news/press) |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | A conversation about the launch of the new NDTi campaign: 'Autism and Ageing: A BIG Conversation' |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.ndti.org.uk/news/talking-inclusion-ep-16-autism-and-ageing |
| Description | National Autism Implementation Team (NAIT) Scotland - Newsletter article |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | An article written for the NAIT Newsletter that is sent to members 4 times per year. Target audience includes practitioners across health, (school and further) education , employment, social care, third sector and local authority/ Scottish government policy leads. The article outlined the recommendations from the 'More Than Words' report (key fellowship output). |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.thirdspace.scot/nait/ |
| Description | Radio interview on Greatest Hits Radio (aired 13/10/22) |
| Form Of Engagement Activity | A broadcast e.g. TV/radio/film/podcast (other than news/press) |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Media (as a channel to the public) |
| Results and Impact | Interview for broadcast on Greatest Hits Radio outlining the collaborative 'Talking Together' project with Figment Arts and autistic artists for National Mental Health Day. Topics discussed were related to the process of making the videos, autistic experiences of lonelness and stigma. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Sussex Partnership NHS Foundation Trust Children and Young People's Service Neurodevelopmental Pathway Away Day, |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Talk called "Double Empathy Problem and Neurodivergent Communication in Healthcare Settings" delivered to the Sussex Partnership NHS Foundation Trust Children and Young People's Service Neurodevelopmental Pathway Away Day, 21st September 2022. Recommendations from the 'More Than Words' report shared. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Talk given to the Autistic Mutual Aid Society Edinburgh (AMASE) "Linguistic Autistics" event |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Public/other audiences |
| Results and Impact | Talk called "Cross-neurotype communication: the double empathy problem and relevance theory" given to the Autistic Mutual Aid Society Edinburgh (AMASE) "Linguistic Autistics" event, online. 13 October 2022. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.youtube.com/watch?v=zUBUrm7KV3Y&list=PL14mH1rV2nUGnyD4onIebd-SkWnW_yBwT&index=9 |
| Description | University of Southampton / SCDTP Business Boost Impact Brochure - article feature |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Industry/Business |
| Results and Impact | Contribution to the SCDTP 'Business Boost' Impact Brochure, showcasing how the South Coast Doctoral Training Partnership is working to help businesses innovate. This case study article outlined my collaboration with colleagues from the National Development Team for Inclusion and Buro Happold Lighting to develop some sensory-friendly LED lighting guidelines for hospitals. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://issuu.com/university_of_southampton/docs/business_boost_2022 |
| Description | Unviversity of Brighton Approved Mental Health Professional Continuing Professional Development Training |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Delivery of a training session "Communicating well with autistic people (in crisis situations)" at the University of Brighton AMHP Refresher Day, 28th June 2022. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Web article about the 'Talking Together' animations project on Greatest Hits Radio website. |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Media (as a channel to the public) |
| Results and Impact | Companion article to the broadcast interview on Greatest Hits Radio for National Mental Health Day |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://planetradio.co.uk/greatest-hits/sussex/news/autistic-artist-in-sussex-open-up-about-loneline... |