Motherhood and Autism

An Embodied Theology of Motherhood and Disability

Eilidh Campbell

• Publisher: SCM Press
• Year: 2021
• Print ISBN: 9780334061502
• eBook ISBN: 9780334061526
• Topic: Teología y religión
• Subtopic: Teología cristiana

While autism is gaining increasing attention as an important subject of theological inquiry, the maternal experience of caring for a child with autism has had less attention.Traversing issues of gender, embodiment, disability and motherhood, this book explores the distinctness of mothering within the context of autism, examining how theology currently responds to the challenges this lived experience presents.Weaving together an honest reflection on her own experience with analysis of contemporary theological works on disability and motherhood, the book reflects on mothering, and especially mothering of autistic children, as a unique site of struggle and resistance.

Part 1: Autism, Ambiguity and Unusual Beginnings

I tried to remember a time before. It had not always been this way, had it? It was in his last year of nursery that it all began, wasn’t it? … Wasn’t it? I tried to retrace our steps, all the while painting over the sleepless nights, the furious tantrums, with the rosy tint of denial. Yet those little moments stubbornly refused to be painted over and began to take on new vividness, new meanings, under my now critical gaze.

I remembered when he had just turned one, and suddenly refused to wear the red dungarees I so loved him in. Every time I buckled the straps, he furiously tore them off, standing indignantly in his nappy shaking his head. At the time, I found his stubbornness amusing. He knew what he liked. I took pride in what I perceived to be his maturing personality; he was choosing his style. Looking back now, it was the beginning of a slow, insidious and seemingly arbitrary rejection of anything he did not like the feel, colour or fit of. By the time he was two, he could tolerate only a handful of items of clothing; those that he would tolerate he could not bear to grow out of and would continue to wear even after they had long stopped fitting.

I remember one morning drinking coffee with his ‘aunt’, my childhood friend. She was my sister formed without blood, and she lived with us in his first few years. Micah was playing contentedly on the floor with his toy cars, lost in his own world. He was always content with his own company, rarely demanded attention for the sake of attention. She was watching him, but her gaze had an intentness beyond the pride of a loving aunt. She quietly observed as he pulled his cars out of the box and lined them carefully and studiously up by colour in a row. He would put them all back and then repeat the process again and again.

‘He knows his colours,’ I said brightly, if a little uncertainly. Something was wrong. She was unreachable in that moment. I could sense that something had shifted in her perception, but I didn’t know what. ‘He doesn’t drive his cars,’ she said softly. It was true. He didn’t zoom his cars around the floor, simulating crashes or using the chairs as tunnels as her brother had done. The eldest of five siblings, she knew babies. Was he different from the babies she had nurtured before? We have never spoken about it. Looking back, I wondered if, in that moment, she knew. It was to be many years from that moment before any of us would have an answer.

1. Autism: An Enduring Enigma

Perhaps one of the most defining characteristics of the condition commonly known as autism is its difficulty to define. While there can be seen to be a series of shared characteristics, the ways in which these characteristics present in any given individual are unpredictable and varied (Burack et al., 2001, p. 11). Why one set of symptoms may be present in one individual with autism yet not with another is a mystery that we are no closer to solving. Dr Stephen Shore, a professor in special education and himself autistic, once famously declared, ‘If you have met one person with autism … you have met one person with autism.’1 Having had the privilege and opportunity through both my son and my work to meet other children, and adults, on the autism spectrum, I can say this to be true. I have never met another Micah, nor have I met any individual with autism who I could say was just like another. They are all brilliantly, curiously, inexplicably different. This is perhaps one of the most simultaneously wonderful and problematic features of autism: that one could spend years charting the behaviours and peculiarities of one autistic individual, only to discover the findings have little to no relevance to another.

The inconsistency and unpredictability in the symptoms of autism could undoubtedly be seen as contributing to the decades of confusion, misrepresentation and conflicting theories surrounding autism as a diagnostic category. Despite first being documented as a distinct category of observable symptoms in the early 1940s, there continues to be debate as to whether autism can be seen to be a psychological, biomedical or environmental condition (Wing, 1996, p. 33; Loveland, 2001, p. 17). Furthermore, increased visibility and understanding of autism notwithstanding, there remain some who continue to question whether autism is, in fact, a ‘real’ condition at all.2 The ambiguity in the causes, symptoms and presentation of autism has resulted in it being a condition that is notoriously difficult to diagnose, with no current uniformly agreed-upon methods of management or support.

The apparent ‘spike’ in autism diagnoses in the last century has given rise to a myriad of competing, conflicting and often controversial theories as to why such an acceleration has taken place, confounding much of the confusion that already existed regarding autism as a condition (Silberman, 2015, p. 6). In order to unravel some of this confusion, understanding how autism presents itself and how it came to emerge as a diagnostic category may shed considerable light as to why, decades into our collective awareness of autism, it continues to be such a misunderstood and misdiagnosed condition. In what follows, I will explore the development of autism as a contested condition, charting the historical turbulence and conflicting research agendas that have complicated autism research and, consequently, autistic experience.

Emergence of autism: a legacy of confusion

Kanner’s Syndrome

These characteristics form a unique ‘syndrome,’ not heretofore reported, which seem rare enough, yet is probably more frequent than is indicated by the paucity of observed cases … To satisfy the need for some terminological identification of the condition, I have come to refer to it as ‘early infantile autism.’ (Kanner, 1943, p. 242)

In 1943, Dr Leo Kanner released his seminal article, ‘Autistic Disturbances of Affective Contact’, which would later form the blueprint of clinical understandings of autism for generations to come. De-camped from Germany during World War Two, Kanner had become a respected child psychologist working out of Johns Hopkins Memorial Hospital in Baltimore in the early 1940s when he began to receive children who were, at such point in time, considered ‘lost causes’. Many had exhausted other diagnostic avenues, most had been declared schizophrenic, mentally retarded, psychopathic, even deaf and mute. Some of these children had confounded diagnosis, yet all shared a distinct commonality – their parents were desperate for answers to the enigmas that were their children. For such children, prognosis was often lifelong institutionalization, and so the significance of Kanner’s diagnosis cannot be understated for these families. For some, he was quite literally their last chance of having some semblance of a ‘normal’ family life.

The children brought to Kanner for assessment were afflicted by a myriad of unusual and distressing symptoms. After observing 11 such children, Kanner was able to identify common characteristics among those referred to him that differed from the characteristics presently defined as childhood schizophrenia, with which many of his subjects had been previously diagnosed. At times, we can discern almost a poignancy to Kanner’s observations of the children in his study. He describes one boy, Richard, in the following way:

He did not communicate his wishes but went into a rage until his mother guessed and procured what he wanted. He had no contact with people, whom he definitely regarded as an interference when they talked to him or otherwise tried to gain his attention. The mother felt that she was no longer capable of handling him, and he was placed in a foster home near Annapolis with a foster woman who had shown a remarkable talent in dealing with difficult children. Recently, this woman heard him say clearly his first intelligible words. They were, ‘Good night.’ (Kanner, 1943, p. 226)

What was relatively unique about Kanner’s approach to psychology in the United States at the time was his belief that family history, in particular family dynamics, were significant factors in the diagnostic process. In addition to patient observations, Kanner also documented what he perceived to be common factors in the parents who presented their children: ‘There is one very interesting common denominator in the backgrounds of all of these children … they all come from highly intelligent families’ (Kanner, 1943, p. 248). While he proposed that his patients indicated that autism was an innate, developmental condition, one that was described as being present from birth in many of his patients, Kanner also cited the similarities presented by the parents themselves as exacerbating, or indeed inducing, their children’s symptoms. He notes, ‘One other fact stands out prominently. In the whole group, there are very few really warmhearted fathers or mothers’ (Kanner, 1943, p. 250).

Kanner, however, faced criticism from his peers as to the reliability of charting the development of children from birth retroactively, particularly when relying on a clinically accurate timeline of development from parents (Silberman, 2015, p. 210). Furthermore, the uniqueness of his diagnosis was challenged, with others in the field suggesting it was almost indistinguishable from the popular diagnosis of early childhood schizophrenia. Kanner maintained, however, that these children did not appear to be afflicted or distressed by their reality, but rather it was others’ reality that these children found perplexing.

The children who were observed by Kanner all presented, in varying forms, with the diagnostic criteria for atypical early development. The most prevalent atypicalities among the children were development of speech, response to external stimuli or affection and personal independence. As a consequence, some of the children had been diagnosed as deaf or mute, as it was perceived that their inability to vocalize, respond to commands or instruction, or express their needs was a consequence of their inability to hear and therefore engage with the world around them. Kanner, however, believed that the children’s inability to respond was not related to their inability to recognize speech, but rather their inability to infer any meaning or significance from it that was relevant to them (Kanner, 1943, p. 225). He observed that, ‘The children’s relation to people is altogether different … people, so long as they left the child alone, figured in about the same manner as did the desk, the bookshelf, or the filing cabinet’ (p. 246).

This, coupled with the lack of speech development, severely inhibited the children’s ability, or seeming desire, to communicate. He observed that in instances where speech had developed in his patients, their speech pattern was unusual. Some of his patients could recite complex poems, lists or historical facts; however, they could not initiate spontaneous discussion or respond appropriately to questions put to them. The children displayed a literalness in their understanding of language; they were unable to infer meaning from speech (Kanner, 1943, p. 244). In addition to repetitive patterns of speech, the children all shared repetitive behaviours or preoccupations with objects, often simply spinning their object of choice for many hours rather than engaging in creative or imaginative play. Repetition could also be seen to reinforce the children’s concern with routine, with many unable to cope or function with any deviation from their perceived ‘norm’. Although it would be years before Kanner’s article would gain recognition among his peers, the detailed observations on his patients’ unusual idiosyncrasies would in fact, as we have seen, go on to inform the diagnostic model utilized today.

Hans Asperger: parallel histories

One of the enduring curiosities relating to autism is that it was first ‘discovered’ almost concurrently, by two separate individuals who had never met, on opposite sides of the world. While Leo Kanner is widely credited to have first observed autism as a distinct condition, in a serendipitous turn of events Dr Hans Asperger, a leading paediatric psychiatrist in Vienna, also found himself immersed in a similar world of bewildering and beguiling children a year later, in 1944. Although Kanner’s article had already been published, it initially received little professional acclaim, and so it is generally accepted that it would have been highly unlikely to have crossed Asperger’s path prior to his own publication. It is interesting to note, though, that one of Asperger’s primary diagnosticians, George Frankl, also worked under Leo Kanner as a psychiatric paediatrician after fleeing Vienna in 1937 and, despite failing to be credited by Kanner, arguably contributed much to his research (Silberman, 2015, p. 180).

Asperger’s patients similarly presented with delayed development and an extreme detachment from the social world. The children, like Kanner’s, were preoccupied with objects or routines but seemed to have little or no interest in pleasing or bonding with their caregivers, to the extent that they were also often peculiarly violent towards others and seemingly without remorse (Asperger, 1944, translated in Frith, 1991, p. 77). Both men, however, had distinctly different approaches to their practice. Rather than rely on retrospective accounts of their condition, or subject these children to standardized tests (many of which they had already failed to measure on), Asperger and his colleagues at the Vienna clinic instead attempted to observe the children in as natural and comfortable an environment as they could create for them within a hospital setting, and instead painstakingly documented the minutiae of idiosyncrasies that formed each individual child as they naturally presented themselves (Frith, 1991, p. 7).

Modelled on Erwin Lazaar’s compassionate therapeutic approach, the Vienna clinic was unparalleled at the time in its unique and innovative approach to therapy. Rather than adopting a purely medical model of intervention, the clinic combined biomedical treatment with education and play therapy in an ‘intuitive synthesis’ that accepted, rather than condemned, the children’s differences (Frith, 1991, p. 7). The children were allowed to indulge in their respective proclivities, with Asperger and his team seemingly intuiting that allowing such obsessions to be explored could potentially break down some of the barriers that adults typically had in engaging with these children. As perhaps one of the earliest examples of person-centred and inclusive learning that we are only now, in very recent years, showing a shift towards in education, Asperger believed that it was the environment in which the children were forced to learn...

Table of contents

• Copyright information
• Contents
• Epigraph
• Acknowledgements
• Prologue: The Beginning
• Introduction
• Part 1: Autism, Ambiguity and Unusual Beginnings
• ...
• 1. Autism: An Enduring Enigma
• 2. Causes for Conflict – Theories as to the Origins of Autism
• ...
• 3. The ‘Triad’: Difference, Distinctions and Diagnosis
• 4. From Uncertainty to …?
• 5. Diagnosis: A Spectrum of Emotions
• 6. ‘The Power of Naming’: Who Wears the Label?
• Part 2: Disability, Normalcy and Stigma
• ...
• 7. Disability and the ‘Other’: The Social Construction of Normalcy
• 8. Autism, Disability and ‘Lives Unworthy’
• 9. Autism, Invisibility and the Problem of ‘Passing’
• 10. Averted Gazes: Living with Stigma
• 11. Disabled Bodies, Able World?
• ...
• 12. Struggling for Support
• Part 3: ‘Every day is a battle’ – Mothers ‘en la lucha’
• ...
• 13. Refrigerator Mothers: Too Cold to Care?
• ...
• 14. A Mother’s Work is Never Done: Struggle in the Everyday
• ...
• 15. Necessity is the Mother of Invention: ‘Maternal Thinking’ and Neglected Sites of Knowledge
• ...
• 16. Lived Experience in Practical Theology: Knowing Your Limits
• ...
• Conclusion: ‘Pragmatic Unresolvement’ – Towards a New Theology of Struggle
• Postscript: Micah’s Own Words
• Bibliography