The impact of a late autism diagnosis on the experience of motherhood among women and gender-diverse individuals

The majority of autistic women and gender-diverse individuals are undiagnosed and under-represented in research. This has contributed to a male-biased understanding of autism, which has consequences for access to timely diagnosis and support for other genders. Studies have shown that females, when compared to males, are more likely to receive an autism diagnosis in adulthood rather than in childhood. Furthermore, for many mothers, diagnosis occurs after they recognise their condition whilst researching their children’s autistic behaviours. In the past few decades, there has been growing recognition that individuals of all ages and genders may be autistic and that research should better serve diverse needs. However, a literature search of qualitative research articles describing the experiences of motherhood among autistic women and gender-diverse individuals found only five studies published relatively recently. Autistic motherhood remains poorly understood despite the critical significance of this life period. In this research, I aimed to explore, through a qualitative study, the impact of a late autism diagnosis on women’s and gender-diverse individuals’ experiences of motherhood and the impact that their new identity may have on their maternal self-efficacy. I drew upon both intersectionality and neurodiversity theory for my theoretical framework to support my interpretations. As a mother of an autistic child who received a late diagnosis of autism when I was 50 years old, I believe that my ‘insider knowledge’ was beneficial in understanding and interpreting my participants’ lived experience. I advertised in two private Facebook groups for people who identified as autistic, and ten participants were selected who had met the inclusion criteria. These mothers were all verbal, well-educated, and in contact with other autistic people through social media. Seven of the mothers identified as women and three as gender-diverse. Eight mothers were White British, one was Asian Indian, and one was White Roma. All the mothers had received their diagnosis after they gave birth to their first autistic child. Only two participants had a child whom they categorised as neurotypical. Semi-structured interviews were carried out on MS Teams in a relaxed conversational style. Data analysis was carried out using Interpretative Phenomenological Analysis supported by NVivo software. From my data analysis, four superordinate themes emerged. The first, “Transition to new motherhood”, described the participants’ experiences of becoming new mothers without knowing they were autistic, including the challenges they faced, how they coped with their new child-rearing responsibilities, and the pressure they felt to be ‘good mothers’. Most of the participants had compared themselves to neurotypical mothers they had met, whom they believed were coping far better than they were. The second superordinate theme, “Autistic identity development”, explored the mothers' lived experiences of seeking out, or being sent for, an autism diagnosis, the development of their new autistic identity, and its impact on their experience of motherhood. They had embraced their autistic strengths and had contacted the autistic community, from whom they learnt strategies that worked for their whole family. The third superordinate theme was called “Diagnostic disclosure” and described the mothers’ experiences of disclosing their autism diagnosis to their close and extended families, friends, workplaces, and educational establishments, the various reactions received, and the impact it had on their relationships. Many of the mothers feared the potential consequences of disclosing their diagnosis to health and social care professionals. They described the accusations and discrimination they had encountered from these professionals after sharing that they were autistic. The fourth and final superordinate theme, “An ‘authentically autistic’ family”, described the mothers’ lived experiences from their childhood, adolescence, and undiagnosed adulthood, and how they had reframed them following their diagnoses, their wish to shield their children from similar negative experiences, their battle to get their children diagnosed and supported, and their determination to provide an ‘authentically autistic’ and neurodiversity-affirming home for their family. Receiving their diagnoses proved to be a positive ‘turning point’ for the autistic mothers, improving their mental health and well-being as well as their maternal self-efficacy. Counselling or psychotherapy should be offered to those receiving a late diagnosis of autism, especially when mental health conditions, childhood trauma, neglect or abuse are indicated. There is an urgent need for more up-to-date, co-produced training for health and social care staff to accommodate the needs of autistic individuals, whether diagnosed or undiagnosed, particularly for women, gender-diverse individuals, and those from ethnic minority groups. Due to the heritable nature of autism, professionals should be aware that, if a person has a close relative who is autistic, the likelihood of that person also being autistic is high, even though they may not realise this.