Autism mothers speak out: stories of advocacy and activism from around the world

Autism Mothers Speak Out is an anthology of accounts by mothers of autistic children, now adults, born between the mid 1960s and late 1990s across the world. The purpose of the book is both to challenge the ‘refrigerator mother’ theory of autism, the notion that autism can be caused by bad mothering, and to showcase the advocacy work of mothers. The introduction, written by one of the co-editors, Maggi Golding, an educational consultant in South Africa, outlines changes in perceptions of autism since her first encounter with an autistic child in 1957. As a former teacher in a psychiatric children’s hospital from the late 1950s, she describes an incongruence between the dominant psychoanalytic theories and treatments based on ‘mother blame’, and the committed and devoted mothers she encountered. Fellow co-editor, Jill Stacey, President of the World Autism Organisation and one of the founders of Autism South Africa, contributes a chapter to this book.

As the introduction explains, theories of inadequate mothering causing autism were based on psychoanalytic principles which saw many childhood problems resulting from the psychopathology of mothers. Of particular interest in relation to autism is Bruno Bettelheim (1967), whose best-selling book The Empty Fortress compared mothers of autistic children to concentration camp guards, and suggested ‘parentectomy’, removing the parents from the child, to cure a child’s autism. Bettelheim was later discredited as a fraud, but not before his books and theories had spread globally. Autism continues to be viewed as a psychogenic condition in countries such as France and South Korea today, and despite considerable research evidence to the contrary, ‘mother blame’ persists in the public and professional imagination.

The main text is made up of 15 chapters where the contributors, the eponymous ‘autism mothers’, tell their stories. These rich and detailed accounts, spanning over five decades and nine countries, are left to speak for themselves. Delayed diagnosis, inadequate school provision and poor services for autistic adults are common themes, and will be familiar to many parents of autistic children, autism researchers and professionals today. The stories told reflect attitudes to disability across time and place. Several mothers were told to place their children in institutions, doctors predicted poor outcomes and Irene in South Africa was told by a paediatrician that her daughter belonged in his wastepaper basket. Some of the mothers, rejecting institutionalisation of their young children and faced with no community provision, started their own projects which have expanded and adapted as their children have grown up. Samira in Kuwait and Merry in India were instrumental in establishing schools for autistic children in their countries.

Many of the mothers describe the additional roles required in parenting autistic children. Jackie in America tells us she has ‘become part lawyer, doctor, advocate and fundraiser’ (64) and Petra in Namibia talks of being an ‘investigative forensic journalise, a ferreting researcher and an innovative home therapist’ (129). The initial impetus to effect change often comes from what Jill describes as the ‘dramatic action’ phase of autism parenting (68), an exhausting period where parents try desperately to ‘fix’ their autistic child. The stories told reflect a shift from mothers being held responsible for causing their children’s disabilities to mothers being held responsible for curing them (Sousa 2011). In challenging the narrative of ‘mother blame’, a new role of the super-warrior-mother has developed, presenting a set of social and cultural expectations which may prove to be detrimental to the well-being of mothers, increasing feelings of guilt, isolation and health problems (Courcy and des Rivieres 2017).

The advocacy and activism work of ‘autism mothers’ is often heavily criticised by the autistic community for promoting a cure-based narrative, which is at odds with many autistic advocates who campaign for acceptance, support and empowerment. ‘Autism mothers’ today seem to be faced with the dual burden of ‘mother blame’ and ‘mother cure’, whilst also trying to engage with and learn from autistic advocates. What is illuminating in these accounts, however, is how the ‘dramatic action’ phase made way for acceptance and celebration of autism as the children got older. The mothers’ advocacy work continued, but the goal changed from cure to support, from promoting a medical model of disability to supporting the social model. Understanding this process may be beneficial in supporting mothers to support their children, and may help bridge the gap between autism advocates and autistic advocates, both in research and practice.

An area of concern presents in the lack of discussion around consent to share these stories. Whilst not all the autistic grown-up children might be able to give informed consent, only Stephanie, a long-term foster mother, explicitly describes asking permission to write about her experiences. I would have also like some recognition and inclusion of autistic ‘autism mothers’ as we are a group often ignored and marginalised.

This is not an academic book; indeed, Autism Mothers Speak Out offers little analysis beyond the introductory chapter, yet the stories told are insightful and reflective. There is a surprising similarity of experience, despite historical, geographical and cultural differences, which reflects the far-reaching impact of early psychoanalytic theories of autism which placed the blame firmly on mothers. The book will be of particular interest to parents of autistic children and anyone who works with or researches autistic children, adults and their families.

Paula Sanchez
School of Law and Social Sciences, London South Bank University, London, UK
[email protected]