(Over the next few months, I will be hosting a series of guest posts on the social study of autism. In this third post of the series, I’m thrilled to have Jocelyn Cleghorn. Jocelyn is a PhD candidate in cultural anthropology at The University of Western Australia. She is using a neuro-anthropological approach to the research material she gathered during fieldwork at a special education needs school.)
The following is an auto-ethnographic reflection on Refrigerator mothers …
There is a long list of literature concerning the ‘blame the mother’ phenomenon, but it has special relevance for mothers of autistic people who were once known as ‘refrigerator mothers’. Leo Kanner (1949) is credited with having first come up with this concept, but it is Bruno Bettelheim who grasped the idea and made it his own (Severson, Aune & Jodlowski 2008). It seems evident that Bettelheim’s thesis did not gain much support from his colleagues in psychology and psychoanalysis, but he developed a strong lay following by writing for the popular press of the day, and his book ‘The Empty Fortress’ (1967) gained widespread acceptance when it was published.
Essentially Bettelheim argued that, although there may be a biological basis for autism, it was not fully realised unless the mother was particularly cold, empty and unemotional.
Although the refrigerator mother hypothesis is no longer given credence there is still plenty of blame to go around. Every time I hear of a new theory of causation that involves something that happened in utero, something that I should or should not have done, taken, eaten, inhaled, my age etcetera, I mentally shudder at the inference that there was something I did or did not do when I was pregnant with my daughter, Ellie. She is not autistic, but has a severe intellectual disability of unknown etiology. I know that I did the best that I could do given my circumstances and the medical advice at the time (1995), but the idea of blame still dogs mothers of differently abled children.
In its most basic form this blame is manifest in the looks I get when I am in public with Ellie. The curious gaze of strangers is invariably drawn to her but it inevitably flickers to me to see how far the apple has fallen from the tree. Perhaps it is a mother’s guilt, but I always read into this gaze the accusation that I must have done something wrong, or at least passed along faulty genetic material. I have gotten used to it now and it only bothers me when I am having a bad day. I have also been randomly accosted by numerous strangers who sought to give me advice about what I should and should not be doing for Ellie. I know these people mean well, but there is the unspoken assumption/accusation that I have not already done everything I can to help Ellie. Although I may not be directly ‘blamed’ for Ellie’s disability there is an underlying inference that I am failing to affect a cure, to fulfill the ‘warrior-hero’ mothering role (Sousa 2011).
One of my most vivid experiences of ‘blaming’ occurred when Ellie was three years old and I took her to be assessed by an autism ‘specialist’. I was asked to leave the room while this person put Ellie through her diagnostic testing routine. Ellie ‘failed’ this test and I was told that, although she had various autistic type behaviours, she did not have autism. The ‘specialist’ then launched into a diatribe about something being ‘terribly wrong’ with Ellie, and demanded to know, “What are you doing about it?” I was somewhat incensed by this, having spent the best part of three years trying to convince various other medical ‘specialists’ that there was something very different about Ellie, however, the accusation from a health professional, that I was not doing enough to help Ellie, left me too stunned to retaliate.
With the above in mind I should not have been surprised to encounter so much maternal blame when I did my fieldwork, but I did. My fieldwork was in a special education needs school, primarily with the eighteen students of the two senior classes and, although my focus was on intellectual disability rather than autism specifically, many of the students did have an autism diagnosis.
When a student had poor self-help skills it was invariably thought to be because the mother did everything for the child at home: she cares too much and smothers the child. If a student was dressed in ill-fitting or unclean clothes then it was the mother’s fault, with little thought for any mitigating circumstances such as a lack of time, equipment failure, or choice/agency on the part of the child/student: the mother cares too little. If a student was too thin then it was the fault of the mother for not feeding her child properly. Conversely, if the student was overweight the mother was blamed for not providing the correct nutrition, and perhaps resorting to ‘fast food’ too often. It strikes me that these later two examples take the ‘refrigerator mother’ accusation back to its metaphoric roots whereby there is too little or too much in the refrigerator, and the perceived quality or lack of food correlates with the perceived quality of lack of emotional engagement and care given.
While these mothers were blamed for the perceived ‘neglect’ of their children one mother of a young autistic man was directly blamed for his autism. Perhaps not for direct causation, but for compounding it and making it worse with her ‘fussing’ and ‘smothering’ ways: again, she was caring too much.
Perhaps some of this blame was justified, I would not like to say without direct knowledge of the individual circumstances and available resources, but it was usually teachers and education assistants, themselves mothers of typically abled children, who were making these accusations and I was often tempted to utter something about ‘keeping your own house in order’, or ‘walking a mile in someone else’s shoes’.
To be fair I should also acknowledge that I am often congratulated for the care I give Ellie, but this praise is also fraught. It implies that she is so ‘other’ that only someone with exceptional mothering abilities could cope. People do not seem to understand that by reifying me, and all the ‘warrior-hero’ mothers (2011), and our mothering abilities, they are promulgating the stigma and stereotypes of people with disabilities.
It is not easy being a parent, and it can be challenging to parent a child who is differently abled, but it would be nice to do this with the support of others rather than their judgement. An anthropology of autism is one way in which we can interrogate some of the issues associated with ‘blame’, and the underlying assumptions that support and reinforce the stigma and stereotypes associated with autism, and other differently abled people.
Bettelheim, B. (1967). The Empty Fortress: Infantile Autism and the Birth of the Self. New York, Free Press.
Kanner, L. (1949). “Problems of Nosology and Psychodynamics of Early Infantile Autism.” American Journal of Orthopsychiatry 19(3): 416-426.
Severson, K. D., Aune, J. A. and Jodlowski, D. (2008). Bruno Bettelheim, Autism and the Rhetoric of Scientific Authority. Autism and Representation. Osteen M. New York, Routledge: 65-77.
Sousa, A. C. (2011). “From Refrigerator Mothers to Warrior-Heroes: The Cultural Indentity Transformation of Mothers Raising Children with Intelletual Disabilities.” Symbolic Interaction 34(2): 220-243.