Gender Differences in Autism Spectrum Disorders in a Population-Based Twin Sample: testing three hypotheses for male preponderance.
Lead Research Organisation:
King's College London
Department Name: Social Genetic and Dev Psychiatry Centre
Abstract
The proposed research aims to investigate gender differences across the full range of the autism spectrum, in a population-based sample of twins. Autism Spectrum Disorder (ASD) is a neurodevelopmental condition characterised by difficulties in social behaviour and communication, with restricted/repetitive behaviours and interests. One of the most striking features of ASD is the high male to female ratio, which varies across the spectrum, but is usually estimated at 4-5:1. The higher rate of ASD in males has been seen as a clue to the etiology of ASD; e.g. Baron-Cohen's 'extreme male brain' theory (Baron-Cohen, 2002) or the Female Protective Effect (FPE; e.g. Robinson et al., 2013). However, it is also possible that ASD is less well recognised in females, either due to male-stereotypes or genuine compensation. It is important to know whether current diagnostic practices miss females who would benefit from identification and intervention.
The proposed study aims to address directly the question of whether females with high ASD traits are being missed by diagnostic practices or are instead coping/compensating and do not need a diagnosis. To do this the proposed research will compare four participant groups; females and males who meet diagnostic criteria for ASD, and females and males who score highly for ASD traits, but who do not meet diagnostic criteria. A battery of gold-standard diagnostic tools, cognitive tasks, measures of coping, quality of life, co-morbidities and mental and physical health will be completed by the four groups. This design will allow not only comparison of symptom presentation and cognitive profiles across genders, but also examination of whether high trait females without a diagnosis are compensating or instead 'suffering in silence'. It is vital to understand whether, and why, we fail to diagnose ASD in females, in order to clarify whether the current gender disparity is purely biological or also a reflection, in part, of problems with a male-focused conceptualisation, recognition, assessment or diagnosis of ASD.
The proposed study is part of a longitudinal ASD twin study, nested within the larger Twins Early Development Study (TEDS). This design allows for the inclusion of non ASD co-twins and thus a more family wide exploration of gender, as well as specific examination of the FPE hypothesis, which suggests that a greater etiological 'load' is needed to result in ASD in females than males. Along with the FPE the proposed study tests two further, novel hypotheses: the 'Female Masking Effect' whereby females are less likely to receive a diagnosis of ASD because they are missed by male-focused diagnostic processes, and the 'Female Compensatory Effect' whereby females are less likely to receive a diagnosis of ASD because (in the absence of IQ/co-morbid problems) they cope better with high ASD traits via compensation and therefore do not need a diagnosis.
The population-based design of the proposed study and the inclusion of the full ASD spectrum, address previous limitations with research in this area, such as possible sampling bias (due to use of clinic or volunteer register samples) and circularity (due to inclusion of only those meeting current diagnostic criteria).
The proposed study has the potential to change the way we think about ASD; currently the accepted ratio of 4-5:1 informs research design and sample selection, and females are often excluded from research. The proposed study will tell the research/clinical/stakeholder communities whether and why this ratio may reflect bias in recognition/assessment/diagnosis, with far reaching implications for future research. In addition, the study has potential benefits for females with high traits/ASD by listening to and learning from their experiences. The proposed study has the potential to improve recognition of ASD in females, as a first step to targeting services and rebalancing the scientific and public perception of ASD.
The proposed study aims to address directly the question of whether females with high ASD traits are being missed by diagnostic practices or are instead coping/compensating and do not need a diagnosis. To do this the proposed research will compare four participant groups; females and males who meet diagnostic criteria for ASD, and females and males who score highly for ASD traits, but who do not meet diagnostic criteria. A battery of gold-standard diagnostic tools, cognitive tasks, measures of coping, quality of life, co-morbidities and mental and physical health will be completed by the four groups. This design will allow not only comparison of symptom presentation and cognitive profiles across genders, but also examination of whether high trait females without a diagnosis are compensating or instead 'suffering in silence'. It is vital to understand whether, and why, we fail to diagnose ASD in females, in order to clarify whether the current gender disparity is purely biological or also a reflection, in part, of problems with a male-focused conceptualisation, recognition, assessment or diagnosis of ASD.
The proposed study is part of a longitudinal ASD twin study, nested within the larger Twins Early Development Study (TEDS). This design allows for the inclusion of non ASD co-twins and thus a more family wide exploration of gender, as well as specific examination of the FPE hypothesis, which suggests that a greater etiological 'load' is needed to result in ASD in females than males. Along with the FPE the proposed study tests two further, novel hypotheses: the 'Female Masking Effect' whereby females are less likely to receive a diagnosis of ASD because they are missed by male-focused diagnostic processes, and the 'Female Compensatory Effect' whereby females are less likely to receive a diagnosis of ASD because (in the absence of IQ/co-morbid problems) they cope better with high ASD traits via compensation and therefore do not need a diagnosis.
The population-based design of the proposed study and the inclusion of the full ASD spectrum, address previous limitations with research in this area, such as possible sampling bias (due to use of clinic or volunteer register samples) and circularity (due to inclusion of only those meeting current diagnostic criteria).
The proposed study has the potential to change the way we think about ASD; currently the accepted ratio of 4-5:1 informs research design and sample selection, and females are often excluded from research. The proposed study will tell the research/clinical/stakeholder communities whether and why this ratio may reflect bias in recognition/assessment/diagnosis, with far reaching implications for future research. In addition, the study has potential benefits for females with high traits/ASD by listening to and learning from their experiences. The proposed study has the potential to improve recognition of ASD in females, as a first step to targeting services and rebalancing the scientific and public perception of ASD.
Planned Impact
There are four groups who will benefit from the proposed research. 1)The academic community and researchers working in the fields of ASD and other areas of female mental health and wellbeing will benefit from improved knowledge about females with ASD. Our population-based research with the full ASD spectrum, including high trait non-diagnosed cases, will provide much needed quantitative and qualitative information about the female presentation of ASD. Our research papers and presentations will clarify for the research community whether females are being missed by current ASD concepts and diagnostic processes, and whether the male preponderance is, in part, a reflection of gender differences in compensation and/or masking. This improved information will lead to better recognition and theoretical understanding of the female presentation of ASD. The proposed research will have far reaching conceptual impact for the research community in terms of reframing the debate about, and subsequent research into, gender in ASD.
2)Clinicians diagnosing and working with individuals with ASD and their families will benefit from our research. The research will provide evidence-based findings that will inform the current debate on the diagnosis of females with ASD, and could influence clinical aspects of ASD assessment, increasing the effectiveness of this and of targeting of service provision for females and their families. In addition to clinicians working specifically within ASD, the proposed research will also benefit those focusing on other mental health conditions more generally. If it is the case that females with ASD are missed by current diagnostic processes, it is highly likely that they are misdiagnosed with other conditions (e.g. psychosis) and/or that diagnostic over-shadowing is occurring from genuine co-morbidities (e.g. anorexia, anxiety). The proposed study findings will benefit those working in this field in terms of improving understanding and recognition of ASD in females.
3)Teachers of students with ASD, other mental health conditions or special educational needs will benefit from this research. The qualitative element of the study aims to discover issues most pertinent for females with ASD and high traits, including those relating to educational experiences. This information, teamed with the quantitative results on the presentation of ASD, will aid those working in educational settings. We will test hypotheses about compensation, and our findings may help educators maximise students' compensatory skills. During adolescence/young adulthood social demands may outstrip compensation in ASD, and we will also test hypotheses about unmet educational and social needs for females with ASD/high traits. Our research can establish whether female difficulties are over-looked, with implications for improving recognition in schools/further education. The findings of the proposed study will be used to highlight information about the female presentation of ASD, needs for specific help in education settings and possible strategies to help females develop to their full potential.
4)Women and girls with ASD (and those with high traits) and their families will benefit from the proposed research, as well as being key contributors through the qualitative and quantitative studies. The research will address how ASD is manifested in females versus males, and test three hypothesised sources of male preponderance. Better understanding will help females with ASD via improved recognition, diagnosis, and support. The research aims to develop evidence-based proposals for improving services for females with ASD (including, putatively, those currently unrecognised), to enhance quality of life and wellbeing.
The proposed research has the potential to contribute to the nation's health by vastly increasing our knowledge of gender differences in ASD, and improving recognition of, and services for, women and girls with ASD.
2)Clinicians diagnosing and working with individuals with ASD and their families will benefit from our research. The research will provide evidence-based findings that will inform the current debate on the diagnosis of females with ASD, and could influence clinical aspects of ASD assessment, increasing the effectiveness of this and of targeting of service provision for females and their families. In addition to clinicians working specifically within ASD, the proposed research will also benefit those focusing on other mental health conditions more generally. If it is the case that females with ASD are missed by current diagnostic processes, it is highly likely that they are misdiagnosed with other conditions (e.g. psychosis) and/or that diagnostic over-shadowing is occurring from genuine co-morbidities (e.g. anorexia, anxiety). The proposed study findings will benefit those working in this field in terms of improving understanding and recognition of ASD in females.
3)Teachers of students with ASD, other mental health conditions or special educational needs will benefit from this research. The qualitative element of the study aims to discover issues most pertinent for females with ASD and high traits, including those relating to educational experiences. This information, teamed with the quantitative results on the presentation of ASD, will aid those working in educational settings. We will test hypotheses about compensation, and our findings may help educators maximise students' compensatory skills. During adolescence/young adulthood social demands may outstrip compensation in ASD, and we will also test hypotheses about unmet educational and social needs for females with ASD/high traits. Our research can establish whether female difficulties are over-looked, with implications for improving recognition in schools/further education. The findings of the proposed study will be used to highlight information about the female presentation of ASD, needs for specific help in education settings and possible strategies to help females develop to their full potential.
4)Women and girls with ASD (and those with high traits) and their families will benefit from the proposed research, as well as being key contributors through the qualitative and quantitative studies. The research will address how ASD is manifested in females versus males, and test three hypothesised sources of male preponderance. Better understanding will help females with ASD via improved recognition, diagnosis, and support. The research aims to develop evidence-based proposals for improving services for females with ASD (including, putatively, those currently unrecognised), to enhance quality of life and wellbeing.
The proposed research has the potential to contribute to the nation's health by vastly increasing our knowledge of gender differences in ASD, and improving recognition of, and services for, women and girls with ASD.
Publications
Milner V
(2023)
A comparison of self-report and discrepancy measures of camouflaging: Exploring sex differences in diagnosed autistic versus high autistic trait young adults.
in Autism research : official journal of the International Society for Autism Research
Milner V
(2019)
A Qualitative Exploration of the Female Experience of Autism Spectrum Disorder (ASD).
in Journal of autism and developmental disorders
Happé F
(2020)
Annual Research Review: Looking back to look forward - changes in the concept of autism and implications for future research.
in Journal of child psychology and psychiatry, and allied disciplines
Colvert E
(2022)
Autism Spectrum Disorder and Mental Health Problems: Patterns of Difficulties and Longitudinal Trajectories in a Population-Based Twin Sample.
in Journal of autism and developmental disorders
Lockwood Estrin G
(2021)
Barriers to Autism Spectrum Disorder Diagnosis for Young Women and Girls: a Systematic Review.
in Review journal of autism and developmental disorders
Mehra C
(2019)
Childhood disintegrative disorder and autism spectrum disorder: a systematic review.
in Developmental medicine and child neurology
Livingston LA
(2019)
Compensatory strategies below the behavioural surface in autism: a qualitative study.
in The lancet. Psychiatry
Livingston LA
(2017)
Conceptualising compensation in neurodevelopmental disorders: Reflections from autism spectrum disorder.
in Neuroscience and biobehavioral reviews
Happé FG
(2016)
Demographic and Cognitive Profile of Individuals Seeking a Diagnosis of Autism Spectrum Disorder in Adulthood.
in Journal of autism and developmental disorders
Milner V
(2023)
Does camouflaging predict age at autism diagnosis? A comparison of autistic men and women.
in Autism research : official journal of the International Society for Autism Research
Carter Leno V
(2019)
Exploring the neurocognitive correlates of challenging behaviours in young people with autism spectrum disorder.
in Autism : the international journal of research and practice
Powell G
(2019)
Face processing in autism spectrum disorder re-evaluated through diffusion models.
in Neuropsychology
Carpenter, B
(2019)
Girls and Autism: Educational, Family and Personal Perspectives
Livingston LA
(2019)
Good social skills despite poor theory of mind: exploring compensation in autism spectrum disorder.
in Journal of child psychology and psychiatry, and allied disciplines
Capp SJ
(2023)
Is quality of life related to high autistic traits, high ADHD traits and their Interaction? Evidence from a Young-Adult Community-Based twin sample.
in Journal of autism and developmental disorders
Lai MC
(2019)
Neural self-representation in autistic women and association with 'compensatory camouflaging'.
in Autism : the international journal of research and practice
Lai MC
(2017)
Quantifying and exploring camouflaging in men and women with autism.
in Autism : the international journal of research and practice
Livingston LA
(2020)
Quantifying compensatory strategies in adults with and without diagnosed autism.
in Molecular autism
Martini MI
(2022)
Sex Differences in Mental Health Problems and Psychiatric Hospitalization in Autistic Young Adults.
in JAMA psychiatry
Milner V
(2023)
Sex differences in predictors and outcomes of camouflaging: Comparing diagnosed autistic, high autistic trait and low autistic trait young adults.
in Autism : the international journal of research and practice
Description | At an early stage of this grant, we conducted PPI and interest groups and completed and published a qualitative analysis of concerns and experiences of women and girls on the autism spectrum. Key emerging themes included: trying to fit in, positive and negative impact of autism, other's perspectives on autism, ways of dealing with difficulties and potential obstacles. As a result of that work, we completed and published a study of 'compensation', finding that autistic youth who are 'high compensators (i.e. who look more socially able than their performance on socio-cognitive tests would predict), have higher IQ and better executive functions than 'low compensators', but report being more socially anxious. We have also examined 'camouflaging' using a self-report questionnaire and found that this is positively correlated with self-reported autistic traits (in a general population sample), and negatively correlated with quality of life, in both males and females. We are in the process of analyzing the data from our in depth cognitive and mental health assessments with more than 150 adults with high autistic traits, with or without an autism diagnosis. We have published on the longitudinal mental health data of the autism twin sample. We are currently analysing sex differences between diagnosed versus undiagnosed individuals to test a range of hypotheses specified in the original grant application. Through the process of data collection we noticed that standard diagnostic algorithms may not be optimally sensitive to the manifestation of autism in (at least some) women. We are therefore also in the process of examining our data to try to create improved diagnostic guidance or tools, to address under-recognition of autism in women and girls. |
Exploitation Route | We have communicated our preliminary findings to teachers, to improve awareness and understanding of autism in girls. FH has co-edited a book on Girls and Autism for a general audience. Our published work on compensation has influenced the field. Our work in progress on improved diagnostic algorithms for autistic women could have clinical impact. |
Sectors | Communities and Social Services/Policy,Education,Healthcare |
Description | Our theoretical and qualitative work has contributed to the Girls and Autism Forum (under the auspices of the National Association of Head Teachers; NAHT), which has held two public conferences. This Forum has also produced a free resource for schools (available through NASEN), and published a book for teachers, parents and girls on the autism spectrum: 'Girls and Autism: Educational, Family and Personal Perspectives' Edited by Barry Carpenter, Francesca Happe and Jo Egerton (Routledge 2019). |
First Year Of Impact | 2018 |
Sector | Education,Healthcare |
Impact Types | Societal |
Description | ESRC LISS-DTP PhD Studentship |
Amount | ÂŁ67,500 (GBP) |
Organisation | Economic and Social Research Council |
Sector | Public |
Country | United Kingdom |
Start | 10/2019 |
End | 09/2022 |
Title | Gender Differences in Autism Spectrum Disorders in a Population-Based Twin Sample, 2016-2019 |
Description | This data collection is associated with a large population-based twin study of gender differences in autism. The data were collected from 2016-2019 from a sample population based in the UK. All participants were aged between 20-24 years of age at the time of data collection. The data deposited in this collection are taken from in-home assessments and accompanying questionnaires completed by the twins. The collection includes data from Autism Diagnostic Observation Schedule -2 assessments, the Social Responsiveness Scale (2nd edition) (a measure of autism traits), WASI IQ assessments, Strengths and Difficulties Questionnaire total domain scores (a measure of aspects of mental health) and the WHOQoL Bref (a measure of quality of life). Also included in the collection are demographic information for the participants including sex, age, zygosity and a grouping variable to indicate whether they were included in the study's diagnosed, high trait or co-twin sample groups. |
Type Of Material | Database/Collection of data |
Year Produced | 2021 |
Provided To Others? | Yes |
Impact | Testing hypotheses about sex/gender differences in autism. |
URL | http://reshare.ukdataservice.ac.uk/id/eprint/854577 |
Description | AUDIT-50 |
Organisation | University College London |
Country | United Kingdom |
Sector | Academic/University |
PI Contribution | Intellectual input and research collaboration, based on our previous published work (including on PROTECT). |
Collaborator Contribution | UCL partners won Dunhill Medical funding for new data collection. |
Impact | Data collection is ongoing - no outputs yet. |
Start Year | 2021 |
Description | 'A Picture of Health' book, art exhibition and launch event panel |
Form Of Engagement Activity | Participation in an activity, workshop or similar |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Public/other audiences |
Results and Impact | Medical Research Council London Institute of Medical Sciences organised an art exhibition and book, 'A Picture of Health', and held a launch event at which FH was an invited panelist. |
Year(s) Of Engagement Activity | 2023 |
URL | https://lms.mrc.ac.uk/events-and-seminars/a-picture-of-health-book-launch/? |
Description | Appearance in TV documentary about autism and women |
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 | Public/other audiences |
Results and Impact | FH appeared in BBC documentary 'Inside our autistic minds' to discuss under-recognition of autism in women and girls |
Year(s) Of Engagement Activity | 2023 |
URL | https://www.bbc.co.uk/iplayer/episodes/p0bbnh47/inside-our-autistic-minds |
Description | Autism Research Seminar Series |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | Local |
Primary Audience | Other audiences |
Results and Impact | Members of the research team gave a presentation to the SGDP Autism Research Seminars Series group, to an audience of academic staff, postgraduate and undergraduate students. The presentation provided an overview of gender issues in ASD and the current research in this area. The talk also presented details of the Social Relationships Study and the current grant, including details of the aims and hypotheses, methods and plans for analysis. The presentation sparked questions and discussion afterwards and approaches from others re future collaborative work on gender issues in ASD. |
Year(s) Of Engagement Activity | 2018 |
Description | Autistica Board meeting presentation |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Third sector organisations |
Results and Impact | Invited presentation for the Board of the autism research charity Autistica, at their AGM. |
Year(s) Of Engagement Activity | 2018 |
Description | Conference presentation at the Autistica Discover conference. |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | The RA for the project gave a presentation outlining the findings from the qualitative focus group work undertaken at the start of the grant, at the Autistica Discover conference in Reading. |
Year(s) Of Engagement Activity | 2019 |
Description | Guest post on Mumsnet |
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 | The PI was asked to write a guest post on Mumsnet, and this was followed by the PI answering >170 online questions. |
Year(s) Of Engagement Activity | 2019 |
URL | https://www.mumsnet.com/Talk/guest_posts/3549294-Guest-Post-Why-have-we-overlooked-autism-in-women-a... |
Description | Hannah Devlin interview for Guardian re women and autism |
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 | Gave an interview about under-diagnosis of women with autism, and our ESRC-funded research on gender and autism, to Hannah Devlin, who published a substantial piece in the Saturday Guardian and online. Piece was picked up by a range of other media outlets, and there was interest on social media, and a number of enquiries to our team. |
Year(s) Of Engagement Activity | 2018 |
URL | https://www.theguardian.com/society/2018/sep/14/thousands-of-autistic-girls-and-women-going-undiagno... |
Description | Invited keynote for clinicians, Iceland |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | Invited keynote at the Annual Conference of the Icelandic Medical Association, Reykjavik, to raise awareness of autism in females. Around 100 clinicians attended, with significant interest raised in the topic, and greater awareness of clinical services locally and research internationally. |
Year(s) Of Engagement Activity | 2020 |
Description | Invited talk at the Autism Show |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Public/other audiences |
Results and Impact | At the invitation of the National Autistic Society the PI gave a talk on the main stage of The Autism Show, about autism and women and girls. |
Year(s) Of Engagement Activity | 2019 |
Description | Invited talk given at Community Child Health Conference |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | Invited to speak about recognition of autism in girls for a community paediatric meeting. Resulted in many conversations about under-recognition os autism in girls and the need for improved clinician knowledge, diagnostic practice and post-diagnosis support. |
Year(s) Of Engagement Activity | 2020 |
Description | Keynote at British Neuropsychological Society meeting, November 2017 |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | Regional |
Primary Audience | Professional Practitioners |
Results and Impact | Invited keynote talk, led to discussion and potential collaboration with clinicians and academics. |
Year(s) Of Engagement Activity | 2017 |
Description | Keynote at I-MAR conference |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | Invited Keynote to the Israeli Meeting for Autism Research, sparked discussion and potential new collaborations. |
Year(s) Of Engagement Activity | 2022 |
URL | https://www.autismisrael.org/i-mar-2022 |
Description | MRC Open Day |
Form Of Engagement Activity | Participation in an open day or visit at my research institution |
Part Of Official Scheme? | No |
Geographic Reach | Local |
Primary Audience | Public/other audiences |
Results and Impact | An Open Day was held at the SGDP research centre, which was open to the public, local schools, professional practitioners and students, mainly from the local area. The research team hosted a stall at the event and demonstrated a number of the measures used in the current research study and discussed the aims of the research with those attending. |
Year(s) Of Engagement Activity | 2017 |
Description | Media showcase at ITV |
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 | One of c. 15 female scientists invited to visit ITV for a media showcase with the Academy of Medical Sciences. Spoke about our autism gender work with follow-ups from journalists interested in covering findings in due course. |
Year(s) Of Engagement Activity | 2018 |
Description | NAHT 'Many Voices' Girls on the Spectrum Conference |
Form Of Engagement Activity | Participation in an activity, workshop or similar |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | School leaders, health and education experts, parents, carers and women on the autistic spectrum gathered at a conference organised by National Association of Head Teachers and the National Forum for Neuroscience and Special Education, as a follow up to the conference in 2017 and to highlight the launch of a new book (Girls and Autism: Educational, Family and Personal Perspectives, co-edited by the PI). The PI gave a keynote presentation including information about the ESRC funded research. |
Year(s) Of Engagement Activity | 2019 |
Description | NAHT Girls on the Spectrum Conference |
Form Of Engagement Activity | Participation in an activity, workshop or similar |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | School leaders, health and education experts, parents, carers and women on the autistic spectrum gathered at a conference organised by National Association of Head Teachers and the National Forum for Neuroscience and Special Education, to draw attention to the misinformation, under-diagnosis and lack of representation for girls on the autistic spectrum. The ESRC funded research was highlighted in a 45 minute presentation by Happe, and new coverage of the issues appeard on, e.g., Chanel 4 News. |
Year(s) Of Engagement Activity | 2017 |
URL | http://www.naht.org.uk/welcome/news-and-media/key-topics/special-education-needs/review-of-big-shout... |
Description | Online talk for BEIS |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Other audiences |
Results and Impact | Online talk and discussion with staff from across the UK working for the Department for Business, Energy & Industrial Strategy, about autism and mental health. |
Year(s) Of Engagement Activity | 2021 |
Description | Parliamentary Rountable |
Form Of Engagement Activity | A formal working group, expert panel or dialogue |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Policymakers/politicians |
Results and Impact | House of Lords Roundtable Discussion: "Girls on the autistic spectrum: understanding the impact of gaps in diagnosis and support". PI presented a summary of current research to stakeholders with an interest in autism from Parliament, Whitehall and beyond, who came together to explore what more can be done to identify and support girls on the autistic spectrum. |
Year(s) Of Engagement Activity | 2016 |
Description | Plenary at Annual Conference of General Adult faculty of Royal College of Psychiatrists |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | Gave invited plenary talk at Annual Conference of General Adult faculty of Royal College of Psychiatrists. Good feedback, and particularly re changes in autism concept and research. Possible future collaborations with clinicians explored. |
Year(s) Of Engagement Activity | 2018 |
Description | Poster accepted for The International Society for Autism Research annual meeting |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | A PhD student working with data from the main study has a poster accepted for presentation at the upcoming annual meeting of the International Society for Autism Research. The poster examines changes in ADOS calibrated severity scores from adolescence to young adulthood. |
Year(s) Of Engagement Activity | 2020 |
Description | Poster accepted for the International Society for Autism Research annual meeting |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | The study RA has a poster accepted for the upcoming International Society for Autism Research annual meeting (May 2020). The poster features work carried out within the study looking at educational attainment for the participants and the impact on this of factors such as gender, mental health and behavioural problems. |
Year(s) Of Engagement Activity | 2020 |
Description | Poster presentation at the International Society for Autism Research |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | The study RA gave a poster presentation at the International Society for Autism Research Annual Meeting in Rotterdam. The poster presented findings from the qualitative focus group stage of the grant. |
Year(s) Of Engagement Activity | 2018 |
Description | Prime Minister's Council for Science and technology scoping workshop |
Form Of Engagement Activity | A formal working group, expert panel or dialogue |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Policymakers/politicians |
Results and Impact | Invited to participate in PM Council for Science and technology scoping workshop on learning disability/neurodiversity and technology. |
Year(s) Of Engagement Activity | 2018 |
Description | Radio 4 interview 'The Life Scientific' |
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 | Interviewed about my research for Radio 4 'The Life Scientific'. As a result I was contacted by >100 listeners with questions or requests for further information about our work on autism and women, mental health and other topics. Some of these contacts have led to further discussions and collaborations. |
Year(s) Of Engagement Activity | 2020 |
URL | https://www.bbc.co.uk/programmes/m000m5lh |
Description | SLaM trust ASD Special Interest Group |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | Regional |
Primary Audience | Professional Practitioners |
Results and Impact | Members of the research team gave a presentation to the SLaM trust ASD Special Interest Group, to an audience of clinicians and professionals working across the SLaM trust. The presentation was intended to provide an overview of gender issues in ASD and to highlight the current research, including details of the aims and hypotheses, methods and plans for analysis. The presentation sparked questions and discussion afterwards and approaches from professionals re future collaborative work on gender issues in ASD. |
Year(s) Of Engagement Activity | 2016 |
Description | Showcase event for participants of the research study |
Form Of Engagement Activity | Participation in an activity, workshop or similar |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Study participants or study members |
Results and Impact | The research team organised and hosted a showcase event for study participants and their families/carers, academics, clinicians and students. The full day event included presentations of the preliminary findings from the grant, talks by other professionals working in the area of female autism and a talk by an autistic female to present her experience. The event also allowed the team to collect views from stakeholders about future research priorities. The event led to a great deal of discussion and further contact from attendees, and feedback was excellent with all rating it "very good" or "good". |
Year(s) Of Engagement Activity | 2019 |
Description | Talk for National Autistic Society conference |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | Regional |
Primary Audience | Professional Practitioners |
Results and Impact | Invited to speak at a National Autistic Society conference in Leeds, for professionals (clinicians, teachers, therapists, etc), family members and other stakeholders. |
Year(s) Of Engagement Activity | 2019 |
Description | Visit to Limpsfield Grange School |
Form Of Engagement Activity | A formal working group, expert panel or dialogue |
Part Of Official Scheme? | No |
Geographic Reach | Local |
Primary Audience | Schools |
Results and Impact | Members of the research team visited Limpsfield Grange School, a state secondary special school provision for girls with ASD. The visit was an opportunity to meet with the Head Teacher Sarah Wild to discuss issues surrounding the identification and diagnosis of girls and women with ASD. Additionally the visit allowed the research team to meet some of the girls attending the school to hear their first hand lived experience of ASD. The visit provided discussion and a chance for the research team to learn a great deal about female ASD. The visit also allowed the school to learn about the current research study. The accounts of the pupils were included in the qualitative focus groups stage of the current study and will help to inform the design of interview questions and topic area focus for the main project. |
Year(s) Of Engagement Activity | 2016 |