Positive and Negative Experiences of Mothers with Autism
Objectives: To explore the experiences of mothers with autism in the following areas: (1) pregnancy, childbirth and the postpartum period, (2) self-perception of parenting strengths and weaknesses, (3) communication with professionals in relation to one's child, (4) social experience of motherhood, including disclosing one’s diagnosis of autism in a parenting context, and (5) interactions with social services and the family courts in the UK.
Methods: We used a community-based participatory research model, and recruited an advisory panel of mothers with autism. We co-developed and disseminated an anonymous, online survey for mothers with autism. We recruited 325 mothers with autism, and, for comparison, 91 mothers who did not have autism, but had a child with autism.
Results: Mothers with autism and comparison mothers were similar in age and marital status. There were differences in education (Χ2=15.301, p<0.01), gender identity (Χ2=9.354, p<0.01), and age at first birth (t=2.3482, p=0.02) between the groups. Mothers with autism were more likely to have experienced pre- (Χ2=13.772, p<0.01) or postnatal (Χ2=7.4339, p=0.02) depression. Mothers with autism reported greater difficulties in areas of parenting such as multitasking (Χ2=43.417, p<0.001), coping with domestic responsibilities (Χ2=30.355, p<0.001), and creating social opportunities for their child (Χ2=7.8881, p<0.01). Communicating with professionals about their child was stressful for mothers with autism. Mothers with autism were more likely to report feeling misunderstood by professionals (Χ2=18.356, p<0.001), greater anxiety (Χ2=32.751, p<0.001) and selective mutism (Χ2=39.679, p<0.001), and not knowing which details were appropriate to share with professionals (Χ2=36.752, p<0.001). Mothers with autism were more likely to find motherhood an isolating experience (Χ2=4.8558, p=0.03), worry about others judging their parenting (Χ2=12.001, p<0.001), and feel unable to turn to others for support in parenting (Χ2=14.717,p<0.001). Mothers with autism and mothers of children with autism were equally likely to have had contact with social services in the UK, with similar outcomes. Disturbingly, approximately 1 in 5 mothers of a child with autism, regardless of maternal diagnosis, were assessed by social services; of those, 1 in 6 had their child compulsorily placed for adoption. Finally, rates of allegations and investigations of suspected fabricated illness amongst children with autism and their siblings were two orders of magnitude higher than the known incidence the UK.
Conclusions: Mothers with autism would benefit from far more and better tailored support. Allegations of fabricated illness, and high rates of surveillance by social services suggest there may be discrimination towards mothers with autism. The stigma associated with autism may be a barrier to accessing services. Further research should consider the mental health implications of being a mother with autism. There is a clear need for more and better autism awareness within the UK.