Improving Healthcare for Autistic People

We are improving healthcare for Autistic people

The Challenge

Autistic people have worse physical and mental health than their allistic (non-Autistic) peers. This includes dying between 16 and 30 years early. Deficit narratives of Autism, discrimination towards Autistic people and significant healthcare inaccessibility all contribute to this. It is important to understand Autistic people’s lived experiences and healthcare needs to reduce and reverse health inequalities.

The Method

Dr Aimee Grant, an Autistic academic, in collaboration with researchers at the Centre for Lactation, Infant Feeding and Translational Research, Autistic UK and Fair Treatment for the Women of Wales has been working with Autistic people to understand the differences in Autistic experiences of healthcare, including in relation to pregnancy, pregnancy loss and breastfeeding. Her Wellcome Trust fellowship, Autism from menstruation to menopause will work with Autistic people to understand their everyday lives and reproductive health needs for eight years.

The Impact

Dr Grant is a founding member of the Maternity and Autism Research Group, a collaboration of academics and clinicians from the UK with the aim of improving maternity care for Autistic people.
Directly informed NHS practice in relation to Autistic people, including the “About me” health passport within the forthcoming NHS Wales Digital App, NHS England training on Autism and Learning Disabilities, and providing bespoke advice to a range of NHS maternity services.
Dr Grant and Professor Amy Brown, within the LIFT Research Centre have been awarded over £2.4m of funding from the Wellcome Trust to gain an in-depth understanding of reproductive health needs of Autistic women and other Autistic people who menstruate throughout the life course, in order to improve healthcare.

Dr Grant is the co-founder and co-chair of the international Autistic Health Research Network, a collaboration of Autistic clinicians and researchers who aim to improve Autistic health and healthcare through undertaking neurodiversity-affirming research.

Provided training to a range of third-sector organisations to improve care provided to Autistic service users, including Sands, Birth Companions and Lactation Consultants GB.

Led the development of over 100 short videos with Autistic professionals and parents focused on “Autistic pregnancy, birth and beyond” to answer common questions Autistic people had about maternity care. https://www.youtube.com/@AutismMenstruationToMenopause/videos

Aimee was appointed to the Shaw Trust Disability Power 100 list in 2023, in the Science and Engineering category.

What our partners say

“So much autism research has been conducted without direct input from the autistic community, typically involving the parents of autistic children and professionals who work with autistic people. Autistic-led, community driven research is crucial in identifying what really matters to our community, where our strengths lie, and where societal barriers most disable us. I initially contacted Dr Grant (Swansea University) having read some work they were disseminating on-line and we began to collaborate on projects researching autistic experiences of infant feeding. Being involved in the research that evidences the areas we prioritise for advocacy means that we can effect change much faster knowing that inclusive and collaborative research designs have been used, focusing on matters that are important to the autistic community. As a result of working with Swansea University and my involvement with the autistic mothers' experiences of infant feeding systematic review I was approached by the National Autism Team for Wales to record a video for their healthcare worker online training module. I have found the team to be lovely to work with and hope we can collaborate on many projects in the future.”

Kathryn Williams, Autistic UK

Research Lead

Dr Aimee Grant

Research Partner

Autistic UK

Research Collaborator

Fair Treatment for the Women of Wales

Podcast

How can we improve healthcare for autistic people?

Find out more about this research and other work by Dr Aimee Grant

Academic papers:

Grant, A, Williams, G, Williams, K and Woods, R. (2023). Unmet need, epistemic injustice and early death: how social policy for Autistic adults in England and Wales fails to slay Beveridge’s five giants. Social Policy Review 35 – freely available: https://bristoluniversitypressdigital.com/display/book/9781447369219/9781447369219.xml
Ellis, R. (…) Grant, A. (2023) A realist review of health passports for Autistic adults. Plos ONE. https://doi.org/10.1371/journal.pone.0279214
Grant, A. et al. (2022). Autistic Women’s views and experiences of infant feeding: A systematic review of qualitative evidence. Autism.

Recent blogs/conversation articles:

Grant, A. (2023). The differences autistic people may experience when breastfeeding. UNICEF Baby Friendly
Ellis, R. and Grant, A. (2023). No evidence to say whether autism health passports are effective – new research. The Conversation
Grant, A. (2023). Supporting Autistic people during pregnancy: five things that can make a real difference. Maternity and Midwifery Forum.
Grant, A. (2023). Autistic people told me they had questions about pregnancy, birth and beyond, so we answered them! Autistic Parents UK
Grant, A. and Williams, K (2023). “Dehumanising policies” leave autistic people struggling to access health, education and housing – new review. The Conversation
Grant, A. (2023). Autistic-led research: how to understand Autistic parents’ needs. Maternity and Autism Research Group.
Grant, A. et al. (2022) Autistic women’s views and experiences of infant feeding: A systematic review of qualitative evidence. Autism. DOI: 10.1177/13623613221089374
Grant, A. (2022). Six ways health professionals and peer supporters can help Autistic women meet their breastfeeding goals. Breastfeeding Network News.
Grant, A. (2022). Q&A: Autistic mothers experience ‘exacerbated’ breastfeeding challenges. Healio.
Grant, A. and Williams, K. (2022). Autistic Mothers’ experiences of breast- and formula- feeding babies: what does the evidence say? Autistic UK blog.