PhD student Alexa Pohl took on the impressive duty of speaking at a thematic briefing for the United Nations (UN). Ms Pohl, who has just entered the final year of her PhD, was asked to speak as a disability advocate at a briefing for the Committee on the Elimination of all forms of Discrimination Against Women (CEDAW).
The Convention on the Elimination of all forms of Discrimination Against Women was adopted by the UN General Assembly in 1979 and defines what constitutes discrimination against women, as well as outlining the ways in which such discrimination can be eliminated. The Convention represents a large body of work by the Commission on the Status of Women – an intergovernmental body dedicated to gender equality and empowerment of women – and is often referred to as the international bill of women’s rights.
Ms Pohl was asked to address CEDAW to present research on the stigma surrounding autistic mothers, as well as to participate in a discussion on this topic. This opportunity came about due to her work on a pioneering study that focuses specifically on the experiences of autistic mothers. The study, carried out at the Autism Research Centre within the Department of Psychiatry, aimed to explore the experiences of autistic mothers in order to understand what challenges and issues they feel are the most relevant to their daily lives, and to understand what coping strategies and support they use to meet their needs.
The study stemmed from a realisation that there was a distinct lack of empirical evidence on how autism, a lifelong neurological difference, might impact a woman’s experience of parenthood. Previous studies focusing more generally on motherhood in women with learning difficulties or mental health issues indicate that motherhood is a desirable identity for many women with these conditions; however, many mothers with a mental health condition or intellectual disability face stigmatization and isolation. While distinct from autism, the research from these other domains suggests that this is an important area to understand for autistic women.
During the early stages of the study, Ms Pohl and Professor Baron-Cohen hosted a Patient and Public Involvement (PPI) group to foster communication with individuals within the autism community to assist with the study. This approach aimed to directly integrate the autism community into the research process and, in particular, to gain insights directly from autistic mothers.
It was through this PPI group that Ms Pohl met Monique Blakemore, an Australian autism advocate from Autism Asperger Advocacy Australia, who invited her to join the panel of autism researchers and advocates presenting at the UN briefing. Along with Ms Pohl and Ms Blakemore, the panel featured Dr Catriona Stewart of the Scottish Women’s Autism Network, and Ms Magali Pignard, a representative from the Alliance Autiste in France. The meeting, held across October and November at the Palais des Nations in Geneva, focused on approaches to ending all forms of discrimination against women. Ms Pohl was asked to present the preliminary results from the study and to take questions from members of the committee.
We spoke to Ms Pohl who commented on the research project and the experience of speaking at the UN.
“With the dramatic rise in autism prevalence, we should be living in a society that is aware of both the capabilities of people on the autism spectrum, as well as the challenges they face. Although great progress has been made in autism awareness, autistic women are overlooked, as they represent a minority within a minority. For years, autistic women have been advocating for better access to services (such as diagnostic assessments) and adult autism awareness in domains where autistic women need it most, including in reproductive healthcare and amongst professionals who may interact with an autistic mother. We hope that the results of our research can convey the importance of considering autistic mothers in service provisioning and policy, and the briefing for CEDAW was an excellent first step towards educating decision-makers who can create change for autistic mothers.”
NB: We use identity-first language (i.e. autistic adult) in this article, as many, but not all, adults with autism express a preference for identity-first language.
Written by Owen Parsons.