Research in autism

The video below is a conversation between a researcher, parent, educational psychologist, teacher, lead teacher (autism) and SENCO. It gives professionals and the public broader and in-depth understanding of challenges parents experience and its impact on their children's educational experiences. The panel discussion contributes to knowledge by sharing knowledge of existing policy and ways educational professionals can support parents in general, and their autistic children.

The Autism Centre for Education and Research has conducted a research to understand the educational provision for children on the autism spectrum coming from marginalised families. For this project we classified marginalisation as families coming from minority ethnic communities, those who have English as additional language, families from socially disadvantaged backgrounds, and children who are in social care. We surveyed the views of educational professionals, interviewed parents/ carers and teaching professionals, as well as consulting with a wide range of educational professionals.

Our research highlighted the impact of marginalisation for these children and their families more broadly as well as within education context. We also identified examples of good practice that are already being used in some settings, and what families and professionals consider is required to improve the current provision.

Download the research report

Black fathers’ experiences of autism in the UK are yet to be captured or represented in research. Dr Eli Gemegah's doctoral findings conveyed fathers’ limited involvement in their child’s care needs. Individual experiences differ according to one’s socio-demographics (gender, race, socio-economic status) and this study recognises the role that each of these factors can play on fathers’ experiences and as Black men in the UK. There is currently little research that explores Black fathers’ experiences of their child’s autism in the UK. The information fathers provide will help us to understand more about their experiences and inform ways to better support dads specifically, in the future.

This research provides an opportunity to share fathers’ experiences of raising their child with autism and contribute to much needed research evidence on Black fathers and autism discourse.

During the summer 2020, The Autism Centre for Education and Research (ACER) at the University of Birmingham surveyed parents of autistic children about their experiences during the Covid-19 pandemic lockdown. We particularly focussed on what home education was like and how schools supported families.

We produced a set of videos, to capture the personal experiences of some families. The films cover various topics:

1. Autism, Covid-19 lockdown and school support
2. Positives from the Covid-19 lockdown
3. Struggles during lockdown and managing home education
4. Transitioning back to school after lockdown
5. Learning points for teachers post-lockdown

As well as the videos, we also produced a factsheet for teachers called The Good, the Bad and the Helpful to summarise what families told us. This has a number of recommendations and resources that teaching staff can use. Please feel free to share it and/or print it out.

Traditional methods of autism education are outdated and need to change to support the success of pupils with autism in education. This Excellence in Autism Research and Practice webpage brings a few of the projects which highlight the substantial contributions ACER has made to developing autism education founded on both the knowledge base of research and practice. 

Parents play a crucial role in the education of children with autism and due to substantial cuts in the provision for people with disabilities the need to train parents using technology in innovative ways is more pressing than ever. The need for such training is greater in rural areas where parents and children have to travel long distances to get the support they are entitled to. Professionals in these areas also spend many of their working hours travelling. This study will replicate a study conducted in the US (Meadan et al., 2016) and will explore the extent to which training and coaching parents of children with autism in a county of North West England via telepractice can be an effective alternative or supplemental service. This is a 12 month project funded by BA/Leverhulme Small Research Grants (funding awarded: £9,027.27). 

Find out more about the project Using telepractice to train and coach parents of children with autism in rural areas in North England

Dr. Lila Kossyvaki is leading a new study Teacher Training and Attention in Autism funded by Erasmus Plus which started in October 2019. She is working with nine partners from four different countries (UK, Greece, Spain and Israel) and the collaboration involves universities, schools and a professional development body. The team have been awarded nearly €300,000 and the funding is for two years. The main objective of the project is to provide resources on the topic of attention and autism for teachers and professionals working with children with autism.

The project will generate three intellectual outputs. These will be a report on best practice on attention in autism in the four participating countries; a freely available cross platform version of CPAT, a successful attention intervention programme (Shalev et al., 2007) together with a detailed implementation protocol and a Massive Open Online Course (MOOC) targeted at teacher professional development on the topic in the four languages of the programme.

Dr Simon Wallace, Professor Karen Guldberg and Professor Anthony Bailey conducted a research review undertaken for an educational consultancy in Finland (Deduktia) and funded by a Finnish service provider to review the current research landscape in the field of autism studies.

This research review summarised and critiqued discovery research that covers the causes of autism, areas of difference and co-occurring difficulties. Secondly, it provided an overview of research related to practice (signs and diagnosis, interventions, education and adult services).

Through a partnership with Hedda Meadan-Kaplansly at University of Illinois, ACER members Professor Karen Guldberg and Dr Despina Papoudi received seed corn funding for a project entitled “Understanding the needs of culturally and linguistically diverse (CLD) families with children with autism: implications for professional development.”

The aims of this project were to advance research on the needs of culturally and linguistically diverse families with children with autism in the USA and UK. This included enhancing understanding of nuanced differences in policy and service delivery; identifying currently available training resources for practitioners to support CLD families; presenting at two conferences and undertaking collaborative work to co-design a future funded project.

The Transforming Educational Practice in Autism: enhancing the skills, knowledge and understanding of teachers in the UK, Italy and Greece project, also known as 'Transform Autism Education,' was a research and development project (2014 - 2017) funded by the European Commission, to gather together a community of researchers, policy makers and practitioners in the UK, Italy and Greece to research current educational practices in autism in those respective contexts and to create professional development programmes in Greece and Italy. Led by Principal Investigator Professor Karen Guldberg, it involved a partnership of seven organisations in England, Greece and Italy.

Professor Karen Guldberg was commissioned by the World Innovation Summit for Education (WISE), an initiative of the Qatar Foundation, to undertake fieldwork and write a research report on ‘Meeting the needs of pupils with autism: moving forward.’ Dr. Lila Kossyvaki was co-investigator with Dr. Bradley, Dr. Ashbee and Dr Basulayyim as researchers.

The research report was published in English and Arabic. It has been well received, including recommendations and citations from a number of academics in the Gulf region. Professor Guldberg was invited to present at the WISE Summit in Doha in November 2017.

Professor Guldberg was commissioned by the prestigious John and Lorna Wing Foundation to undertake a scientific review of the Benchmarking Autism Services Efficacy (BASE) report in Northern Ireland. This scientific report was undertaken with Professor Guldberg as Principal Investigator and Professor Sarah Parsons at University of Southampton as Co-Investigator.

Ten senior academics were also involved  in the scientific review. These reviewers included Consultant Clinical Psychologist Judy Gould; Professor Connie Kasari (UCLA); Emeritus Professor Patricia Howlin (Kings College); Professor Graeme Douglas (UoB); Professor Neil Humphreys (University of Manchester); Dr. Abigail Knight (UCL); Professor Melanie Nind (University of Southampton); Dr. Samantha Parsons (UCL); Professor Jill Porter (University of Reading); Professor Emma Smith (University of Warwick) and Professor Patrick Sturgis (University of Southampton).

The charity ‘Autism Northern Ireland’ discussed the findings from the report with members of the Executive Office in Northern Ireland. This led the Ministry of Health there to nullify the recommendations made by the initial research that all Early Years children should receive Early Intensive Behavioural Interventions.

Dr. Andrea MacLeod has been leading the development of an internal project which consults with ACER alumni to evaluate the longer-term professional and personal impact of taking an autism qualification at UoB: University of Birmingham Autism Courses: impact beyond the certification. This is based on a large-scale online survey of alumni who have studied with ACER.

This study (2015-2016) explored the use of Monoma by children with autism and additional complex needs at school. Dr Lila Kossyvaki worked with a team of people to implement this project which combined new technologies and music to enrich the skills of the target population. 

The SHARE-IT project (2012 - 2014) systematically investigated how personal and mobile devices could be used to create a scalable intelligent learning environment for autistic children. This was a partnership project with colleagues at UCL and Birkbeck Universities, with Professor Kaska Porayska-Pomsta as overall Principal Investigator. Professor Karen Guldberg was Principal Investigator for University of Birmingham and Dr Lila Kossyvaki worked as a researcher on it.

The aim of this project in 2013 was to establish a bridge between groups in the School of Education, the School of Computer Science and the School of Electrical and Electronic Engineering, thus providing the basis for a collaboration between researchers within University of Birmingham. Professor Karen Guldberg was the Principal investigator, with Dr Nick Hawes, and Dr Ginevra Castellano. PhD student Patricia Perez-Fuster and Dr Lila Kossyvaki were involved from the School of Education, with students Tristan Bell and Alex Maley from the School of Computer Science.

The aim of this ESRC funded project (2012-2013), was to contribute to shaping the future landscape of technology use for children on the autism spectrum in the classroom, and through this to contribute to educational advancement, emotional wellbeing and positive outcomes for children. The project was led by Professor Karen Guldberg, with Professors Sarah Parsons (University of Southampton), Kaska Porayska-Pomsta (UCL) and Wendy Keay-Bright (Cardiff Metropolitan University) as Co-investigators, and with Dr. Lila Kossyvaki and Dr Marilena Mademtzi as researchers at University of Birmingham.

Ashbee, E. & Guldberg, K. (2017) Using a ‘collaborative contextual enquiry’ methodology for understanding inclusion for autistic pupils in Palestine, Educational Review,

Bradley, R. and Newbutt, N. (2018) Autism and virtual reality head-mounted displays: A state of the art systematic review. Journal of Enabling Technologies, 12 (3): 101-113. 

Bradley, R. (2016). ‘Why single me out? Peer mentoring, autism, and inclusion in mainstream secondary schools. British Journal of Special Education. Vol 43, Issue 3: 272-288. 

Guldberg, K., Achtypi, A., D’Alonzo,L., Laskaridou, K., Milton, D., Molteni, P., & Wood, R. (in press) Using the value-creation framework to capture knowledge co-creation and pathways to impact in a transnational community of practice in autism education’, International Journal of Research & Method in Education. 

Guldberg, K. (2017) Evidence Based Practice in autism educational research: can we bridge the research and practice gap? Oxford Review of Education, Vol. 43 (2): 149-161. 

Guldberg, K., Parsons, S., Porayska-Pomsta, K. & Keay-Bright, W. (2017) Challenging the knowledge transfer orthodoxy: knowledge co-construction in technology enhanced learning for children with autism, British Educational Research Journal, 43 (2): 394-413. 

Kossyvaki, L. and Curran, S. (2018) The role of technology-mediated music-making in enhancing engagement and social communication in children with autism and intellectual disabilities. Journal of Intellectual Disabilities. 

Kossyvaki, L., & Papoudi, D. (2016). A Review of Play Interventions for Children with Autism at School. International Journal of Disability, Development and Education, 63(1). 

Kourti, M., & MacLeod, A. (2018). “I Don't Feel Like a Gender, I Feel Like Myself”: Autistic Individuals Raised as Girls Exploring Gender Identity. Autism in Adulthood: Knowledge, Practice, and Policy. 1:1, p. 1-8. 

Loukisas, T., & Papoudi, D. (2016). Mothers’ Experiences of Children in the Autistic Spectrum in Greece: Narratives of development, education and disability across their blogs. International Journal of Disability, Development and Education 63(1). 

MacLeod, A., Allan, J., Lewis, A., & Robertson, C. (2018). ‘Here I come again’: the cost of success for higher education students diagnosed with autism. International Journal of Inclusive Education, 22(6), 683-697. 

Mengoni, S.E., Irvine,K., Thakur, D., Barton, G., Dautenhahn, K., Guldberg, K., Robins, B., Wellsted, D. & Sharma, S. (2017) Feasibility study of a randomised controlled trial to investigate the effectiveness of using a humanoid robot to improve the social skills of children with autism spectrum disorder (Kaspar RCT): a study protocol. BMJ Open. 

Parr, J. R., De Jonge, M. V., Wallace, S., Pickles, A., Rutter, M. L., ... Wittemeyer, K., … & Bailey, A. J. (2015). New Interview and Observation Measures of the Broader Autism Phenotype: Description of Strategy and Reliability Findings for the Interview Measures. Autism Research, 8 (5), 522-533. 

Parsons, S., Guldberg, K., Porayska-Pomsta, K. & Lee, R. (2015) Digital Stories as a method for evidence-based practice and knowledge co-creation in technology-enhanced learning for children with autism, International Journal of Research Methods in Education, Special Issue: E-research in educational contexts,3: 247-271. 

Perepa, P. (2019) A Curriculum for the Dual Disability of Autism & Severe Intellectual Impairment, In R. Jordan, K. Hume and J. Roberts (Eds) Sage Handbook on Autism and Education, London: Sage

Perepa, P. (2019) Autism, Ethnicity and Culture: Working with Children and Families from Minority Communities, London: Jessica Kingsley Publishers

Pinto, D., Delaby, E., Merico, D., Barbosa, M., Merikangas, A., ... Wittemeyer, K. ,… & Rogé, B. (2014). Convergence of genes and cellular pathways dysregulated in autism spectrum disorders. The American Journal of Human Genetics, 94(5), 677-694. 

Porayska-Pomsta, K., Alcorn, A., Avramides, K., Beale, S., Bernardini, S., Foster, M-E., Frauenberger, C., Good, J., Guldberg, K., Keay-Bright, W., Kossyvaki, L., Lemon, O., Mademtzi, M., Menzies, R., Pain, H., Rajendran, G., Waller, A. (2018) Blending Human and Artificial Intelligence to Support Autistic Children’s Social Communication Skills, ACM Transactions on Computer-Human Interaction, Vol. 25, No. 6, Article 35. 

Searle, K. A., Ellis, L., & Kourti, M., MacLeod, A., Lear, C., Duckworth, C., Irvine, D., Jones, H. & Simpson, J. (2019). Participatory autism research with students at a UK university: evidence from a small-scale empirical project. Advances in Autism. 

Spaniol, M.M., Shalev, L., Kossyvaki, L. and Mevorach, C. (2017) Attention Training in Autism as a Potential Approach to Improving Academic Performance: A School-Based Pilot Study. Journal of Autism and Developmental Disorders. 

Wood, R. and Milton, D. (2018) Reflections on the value of autistic participation in a tri-national teacher-training project through discourses of acceptance, othering and power, British Journal of Special Education, 45 (2): 157-171. 

Wood, R. (2018) The Wrong Kind of Noise: Understanding and Valuing the Communication of Autistic Children in Schools, Educational Review. 

Wood, R. (2019) Autism, Intense Interests and Support in School: From Wasted Efforts to Shared Understandings, Educational Review (Funded by ESRC grant number ES/S011161/1). 

Guldberg, K. (forthcoming) Developing Excellence in Autism Practice: Making a difference in education. London: Routledge.

Jordan, R., Roberts, J. and Hume, K. (2019) Autism and education: an international Handbook.London: Sage.

Kossyvaki, L. (2017) Adult Interactive Style Intervention and Participatory Research Designs in Autism: Bridging the gap between academic research and practice.  London: Routledge. 

Wood, R. (2019) Inclusive Education for Autistic Children: Helping Children to Learn and Flourish in the Classroom, London and New York: Jessica Kingsley Publishers. (Funded by ESRC grant number ES/S011161/1). 

Guldberg, K. (2017), ‘Enhancing the impact of research and knowledge co-production in Higher Education through communities of practice’, in MacDonald, J. and Cater-Steel, A. (2016) Communities of Practice- facilitating social learning in Higher Education. Springer. 

Guldberg, K. (2019) ‘Tiers of education: the power of collaborative partnership in the creation and delivery of professional development for autism practitioners.’ In Hume, K., Jordan, R., and Roberts, J., Autism and education: an international Handbook.  SAGE.

MacLeod, A. (2019) Overcoming Barriers to Educational Opportunities post school. In Jordan, R., Roberts, J. and Hume, K. (eds.) International Handbook in Autism and Education.  London: Sage. 

Papoudi, D. and Kossyvaki, L. (2018). Play and children with autism: insights from research and implications for practice. In: P. K. Smith and J. L. Roopnarine (Eds.) Cambridge Handbook of Play: Developmental and Disciplinary Perspectives. Cambridge: Cambridge University Press. 

Perepa, P. (2019) A Curriculum for the Dual Disability of Autism & Severe Intellectual Impairment, In R. Jordan, K. Hume and J. Roberts (Eds) Sage Handbook on Autism and Education, London: Sage

Wood, R. (2019) ‘Freda Fry, Foucault, and the Power of Silent Characters on the Radio’, in Headlam, N. and Courage, C. (eds) Gender, Sex and Gossip in Ambridge, Bingley: Emerald Publishing (Funded by ESRC grant number ES/S011161/1). 

Runswick-Cole, K. and Wood, R. (2017) ‘Bag of the Devil: The Disablement of Rob Titchener’, in Courage, C. and Headlam, N. (eds) Custard, Culverts and Cakes: Academics on Life in The Archers, Bingley: Emerald Publishing.

Guldberg, K., Bradley, R. & Wittemeyer, K., (in press) Principles of Good Autism Practice in Education, Autism Education Trust. 

Guldberg, K., Bradley, R., Baskerville, K., Butler, M. & Simpson, P. (in press), Local Authority Impact Study. Autism Education Trust. 

Guldberg, G., Wallace, S., Bradley, R., Perepa, P., Elliz, L. amd MacLeod, A. (2021) Investigation of the causes and implications of exclusion for autistic children and young people, The Autism Education Trust

Guldberg, G., Wallace, S., Bradley, R., Perepa, P., Elliz, L. amd MacLeod, A. (2021) Investigation of the causes and implications of exclusion for autistic children and young people: Executive Summary, The Autism Education Trust

Guldberg, K., Ashbee, E., Kossyvaki, L., Bradley, R. & Basulayyim, A. (2017) Meeting the needs of pupils in Qatar: moving forward. WISE, Qatar. 

Guldberg, K. & Parsons, S. (2018) Scientific review of the ‘benchmarking autism services efficacy, (BASE) report (2015). 

Guldberg, K., Achtypi, A., Angelidi, E., Baker, L., Bradley, R., Colombo, M., Critchley,S-J., Cumino, R., D’Alonzo,L., Folci,I., Giouroukou, E., Hadjipateras-Giannoulis,K., Huggett, S., Kerem, M., Kokounaras-Liagkis, M., Kossyvaki, A, Laskaridou, K., Milton, D., Molteni,P., Sala, R., Simpson, P., Sofianopolou, K., Wood, R., Zanfroni, E. (2017) Transform Autism Education: final report. EU Erasmus Plus Dissemination Platform. 

MacLeod, A., Ellis, L., Lear, C., Kourti, M., Searle, K., Duckworth, C., Irvine, D., Jones, H., King, M., Ling, J. and Simpson, J. (2017) Enhancing Outcomes for Autistic Students: Executive Summary of the AuVision Project, Birmingham: University of Birmingham.