Autism: A Social and Medical History

By M. Waltz

This book contextualizes autism as a socio cultural phenomenon, and examines the often troubling effects of representations and social trends. Exploring the individuals and events in the history of this condition, Waltz blends research and personal perspectives to examine social narratives of normalcy, disability and difference.

• Language: English
• Publisher: Palgrave Macmillan
• Release date: Mar 22, 2013
• ISBN: 9781137328533

Book preview

1

A Nameless Difference

Ralph Sedgwick¹ lay in the bed, where he was tucked tightly in beneath a crisp white sheet to keep him from wandering. He wiggled his fingers between his eyes and the light that came streaming in through the large window at the end of the hospital ward. The year was 1877, the height of the Victorian era and a time when medical knowledge was expanding rapidly.

As Dr Dickinson strode down the aisle of beds towards the boy, a nurse struggling to keep up in his wake, Ralph took no notice of their approach. He clasped his hands together and turned them, then brought them to his face and rubbed his eyes three times. A chair was brought out for the doctor, and Ralph continued to watch his fingers as they cut through the beams of light. His reverie was only interrupted by a spasm of coughing.

‘Ralph Thomas Sedewick,’ Dickinson’s assistant misspelled the child’s name at the top of the journal page, pen poised to take down the doctor’s notes. For quite some time Dr Dickinson sat watching, pausing only to ask questions of the ward sister and consult his notes from the previous day, when two-and-a-half-year-old Ralph had been brought to Great Ormond Street Hospital in London by his parents.

The mother and father had submitted to Dr Dickinson’s incessant questions for about half an hour before leaving the boy behind. Ralph’s mother had cried and wrung her hands as they left, hands that twitched in her lap even when at rest as she talked about her son.

Ralph was the first child born so far to this working-class couple in Islington. His father, also named Ralph, had managed to learn to read, write, and do basic maths, despite starting life as an abandoned baby. Nevertheless, he struggled to make ends meet helping with a book stall in the market. Books were growing in popularity as literacy increased in England, but there were still days when he felt he might as well not have showed up to unpack boxes for the owner.

Life wasn’t much easier for Ralph’s mother, Margaret, either. Her days were an endless round of cleaning, washing, cooking, and trying to figure out a way to make Thomas’s meagre earnings stretch to feed their growing family. Margaret had always had a bit of a nervous disposition, and since becoming a wife and mother, her anxieties had settled on her children’s health and safety. While pregnant with Ralph, she told the doctor, she had one day seen an idiot boy in the London streets, dragging a gammy leg behind him. As she stared, she saw him knead his hands together and then wave them before his eyes repeatedly. Turning away in disgust, she had a twinge of fear— perhaps it was only an old wives’ tale, but old wives certainly did say that what you saw whilst pregnant could affect your baby. Seeing one of those doomed infants with an enormous, lolling head could cause the same condition in your unborn child, just as surely as seeing a buggy accident could cause your child to be a fearful little thing who started at horses. She had walked rapidly away, holding her swollen belly protectively.

At their interview, she had looked up at Dr Dickinson with pleading eyes at the end of this anecdote. ‘Write it down,’ he told his scribe wearily. He had learned the hard way that there was no point trying to tell parents of sick children that their superstitions were pernicious nonsense.

The doctor prompted her with a standard question about Ralph’s birth, and Margaret continued her tale. The labour had been blessedly quick, she said. Her sister had come for the lying in, and helped to clean him up and bring him to her breast.

The infant had looked as healthy as any baby born to a labouring family in Victorian England, which is to say that he had some serious problems soon enough. He had the constant cough of a child kept indoors in a small, smoky room most of the day, and breathing the foul air of central London when his mother took him out to buy food or do her washing in the courtyard. He was well formed, but with the sunken chest and slightly bowed legs so typical of children fed on a poor family’s diet of porridge, boiled vegetables, and not much else. Ralph’s eyes were rheumy from the start, and didn’t seem to hold his mother’s gaze for long.

‘Do you think there’s something wrong with the lad’s sight?’, his father had asked, watching the infant one day as he lay next to his mother on their pallet, a faraway look in his eyes. ‘No, Ralph— I swear, little Ralphie can stare at the window for hours if I let him. Don’t know if he’s looking for birds or what—remember that time I told you about when a pigeon landed right on the windowsill, and he was so excited?’

His mother’s private worries centred on herself. Ralph had been a poor nurser, and it had been touch-and-go for the first two months. Then he eagerly took a bottle of thin, dubious-looking milk bought from a cut-price vendor down the road—but it was an extra expense the family could scarcely afford. What was wrong with her milk that it made him so sick? And was the store-bought milk safe? Rumours about market traders whitening water with chalk and who knows what and passing it off as milk swept the neighbourhood on a regular basis (Hopkins, 1994).

One thing Margaret knew for certain is that little Ralph’s bowels were a problem, and always had been. From the age of eight months on he had bouts of diarrhoea, and in between these his belly distended and he screamed from constipation. Bowel problems were a frequent killer of babies, and the death of infants was no rarity in Margaret’s world. Mothers could expect to lose at least one or two in their childbearing years, maybe more if they were unlucky enough to be exposed to one of the frequent epidemics of contagious disease that ran riot in crowded cities like London. These, she knew, could take whole families in days. Just thinking about it made her hold her son closer when she passed someone who looked unwell.

Ralph had survived that crucial first year, but his parents knew something was wrong. His first word—blissfully, ‘mum’—was never followed by another. His little legs didn’t seem to work properly either. He had not even tried to crawl, but then surprised them around his first birthday by standing alone in front of his beloved window. Margaret and her husband had expected walking to follow this feat, but it never did. He would pull himself up to stand at the window, but spent much of his time indoors lying on the pallet. Margaret still had to care for him like an infant now. When other lads of two or three were toddling about in the grimy courtyard, ducking under the washing, and chasing each other with sticks, little Ralph sat or lay on the ground, playing with his hands and fingers. He would hold a stick or a rag, but he didn’t play with them as the others did. Whatever you gave him to hold was sniffed and tasted, no matter how dirty, then turned about in his hands as though he was blind. If it met his approval, it then became part of his odd fingerand-hand play, passed back and forth across his face as if blocking out the light and revealing it again was the most fascinating game in the world. Ralph would bring his fist up to his eye, then put his hands together and knead them like a washerwoman wringing out a shirt. Meanwhile, he would roll his head from side to side.

Seeing him like that bothered Margaret so much that if she could, she left him indoors. She knew what other mothers said about those who had an idiot child.

An idiot child. Just the idea struck fear into her heart. Idiot children became idiot men. On her worst days Margaret thought of herself as an old woman, spooning soup into the mouth of a hulking, drooling imbecile. When inside their room, she often watched Ralph as he stood holding onto the windowsill for what seemed like hours, swaying back and forth, and tried to imagine him doing that as a grown man. When he lay on the pallet and brought his feet right up to his belly, pulling at his toes like a baby, she tried to think what that would look like at 16, or 36.

These thoughts usually gave way to sobs, and the day she brought Ralph to the hospital, despite the presence of a gentleman like Dr Dickinson, was no different. Fighting back her tears, Margaret tried to defend her lad against the unspoken verdict of idiocy. She knew he could see and hear, she said. Most of the time Ralph would alert to his name when she spoke to him. Though he wasn’t able to follow directions, he knew their daily schedule and would let her know how upset he was when it wasn’t kept. ‘He does have understanding,’ she said, looking up at the doctor, ‘I know it. If only he could talk to us!’

Dr Dickinson finished the interview with the usual round of questions about illness. He was interested to hear that Ralph had never had fits—a rarity in his experience of children like these at Great Ormond Street—and that so far he had been spared any illness more serious than the bowel problems and coughing Margaret had already described. No blood came up with his cough and neither parent looked tubercular, all good signs as far as the boy’s survival was concerned.

When the doctor got up to continue his rounds, Ralph senior, who had been silent through most of the proceedings, stood to shake his hand. He spoke just one sentence: ‘Doctor, is there anything you can do for the boy?’

This was the moment Dr Dickinson had dreaded. ‘I don’t know, Mr Sedgwick,’ he said. ‘We don’t know much about these cases, but sometimes things improve while the child is with us. We’ll keep him for a few days, and see what happens.’

And so they did. No records exist of the regimen applied to Ralph at Great Ormond Street, nor of how he reacted to the unfamiliar experience of daily bathing and plentiful, healthful food. We do know that when his parents came to take him home just four days later, his situation was no better. Ralph was clean and well fed, but he still could not speak more than his single word, was unable to participate in the social and economic life of his family, and could not navigate his environment successfully.

He died the following year, perhaps of illness, perhaps as a result of a beating after soiling the family bed yet again or breaking an important item, perhaps because his family’s poverty meant that this least productive member received the smallest portion of their meagre meals. No specific cause of death was recorded.

Until the Victorian era, sick children were cared for at home, with or without medical attention. The medical profession itself was still quite young at the start of the nineteenth century, and it was a long time before children (other than those of Royal or very wealthy families) were seen as worthy of a doctor’s time. Even upper-middle-class families could at best procure the services of a ‘nurse’—nursing was not yet a profession, so these were generally women with no formal medical training (Wohl, 1983).

In fact, hospitals for children were a brand-new concept when Ralph was born. Great Ormond Street, the first such facility in the United Kingdom, had been founded in 1852. Converted from a spacious townhouse in London, it initially had beds for just ten sick or injured patients. Thanks to powerful fund-raising appeals by patrons like Charles Dickens, it had expanded to house 75 children in two wings by 1858; a larger purpose-built hospital was constructed between 1871 and 1875 (Baldwin, 2001).

As a charitable institution, Great Ormond Street turned no child away for lack of money. The great majority of children in London lived in poverty at this time, leaving lack of information, inclination, transportation, and time as the main barriers to hospital treatment for those in need. Both outpatient and inpatient care were available at Great Ormond Street (ibid.).

Hundreds of others with brain-based conditions also passed through the doors of Great Ormond Street, and a high percentage of these did not live long—conditions that do not result in death today, such as autism, and others that can be successfully treated with modern medicines, such as epilepsy and tuberculosis, had a very different outcome at the beginning of modern medicine. Many of them were attended to by Dr William Howship Dickinson (1832–1913), who served at Great Ormond Street as an assistant physician from 1861 to 1869, and as a physician from 1869 to 1874. There were no paediatricians then, much less paediatric neurologists (or neurologists at all, for that matter)—Dr Dickinson was actually a kidney specialist, who volunteered at Great Ormond Street as a diversion from his normal rounds at St. George’s Hospital (Royal College of Physicians, 1955). While best known for his accomplishments in adult nephrology, Dickinson developed a keen interest in the effects of ill health on brain function and behaviour in children. In the absence of a codified system of diagnosis or treatment, he relied on his prodigious powers of observation. According to his biographer, ‘He was a meticulously careful observer and a man of immense industry … and his example, in the elicitation of patients’ histories and methodological observation, probably had a permanent influence on the crowds of students that invariably accompanied him’ (ibid.).

Dickinson’s work occurred at a crucial moment for children like Ralph. The new practice of gathering young patients into large groups within a hospital made it possible to collate and compare large numbers of patient histories, and to view the progression of conditions when various treatments were employed. Through this process, types of injuries, illnesses, and disabilities could be categorised, and some attempt could be made towards systemised treatment or rehabilitation.

Dickinson left behind three volumes of handwritten case notes, within which the story of Ralph Sedgwick and 23 other children with neurological symptoms like those we call autistic spectrum disorders or conditions today can be found. If it had been an illness like tuberculosis—which actually occupied far more of Dickinson’s time and energy—these documents might have been the foundation of growing understanding. However, for complex reasons that this book will explore, this did not happen.

Nor did his treatment ideas make many inroads, though that was more the fault of a limited formulary. Some children at Great Ormond Street were dosed with simple medicines that weren’t far removed from the herbal remedies available in rural villages 500 years before, such as senna syrup for those with bowel problems like Ralph’s, made from a common flowering herb. A few were given early chemical or mineral compounds, such as calomel (mercury chloride).² The recently discovered salt potassium bromide successfully treated seizures—but left the patient with dulled mental faculties as it was only effective at near-toxic doses (Sneader, 2005).

Primitive bits of apparatus like child-sized walking sticks and frames had to be custom-made for those with incurable physical difficulties. Vaccines and antiseptics were in their infancy, antibiotics had not yet arrived, and even simple surgeries were a life-threatening prospect.

If Ralph could have slipped out of his bed one night and walked silently around the hospital, he would have seen other children with brain conditions ranging from tumours to epilepsy to mental illness. An entire ward was filled with children in the last weeks and days of tubercular meningitis, their eyes burning bright but their brains increasingly disordered. Though Great Ormond Street helped many children who were in need of simple surgery or rehabilitative care following injury or curable illness, only a few of those with conditions affecting the brain left improved.

One of the exceptions to this rule was a little girl with symptoms similar to Ralph’s own, Ida, who had been put into Dr Dickinson’s care five years earlier. She had suffered seizures since infancy: ‘not a day has passed without one or two occurring—sometimes she has had as many as 30,’ the records state (Dickinson, 1869–1882). Her seizures were described as varying in type, number, and severity, with most affecting the left side. Duration could be as short as a minute or, reportedly, as long as 24 hours. In the absence of effective seizure control, these events took a terrible toll on the child’s development.

Many children with epilepsy were seen at Great Ormond Street, but something about the way Ida presented grabbed the attention of both Dickinson and the staff. His observations of this child were even more detailed than his typical case notes. Although the nature and frequency of Ida’s seizures are described, her affect and behaviour were seen as particularly unusual. Dickinson described her sleep pattern as disturbed, and her reaction to people as odd. ‘When awake she sits up and looks about her in a half unconscious way, or else lies rolling about in bed, moving restlessly from side to side,’ he said. ‘[Ida] cannot speak, but if moved in bed contrary to her wishes, or if anything is done that she does not like, she makes a half-screeching noise. If toys be given her to play with she takes no notice of them.’ She was seen to rock in her bed frequently, ‘lurching herself against the bedstead’ (ibid.).

As well as being completely non-verbal, Ida did not have adequate receptive speech. Her physical development and general health were relatively normal: she was described as ‘a well-nourished child … with a fresh colour’ (ibid.), and could stand and walk with minimal support. Dickinson’s neurological examination revealed no major problems, other than a minor squint affecting her right eye. Dickinson wrote that there was no history of a blow on the head, nor of worms, which were then widely believed responsible for causing seizures and behaviour problems in young children.

Ida did suffer from marked and severe constipation. This was probably responsible for her nocturnal screaming fits, and became a focus of her medical treatment at Great Ormond Street.

Seizure control was, of course, the first order of business. Dickinson prescribed three grains of potassium bromide to be taken in a fluid mixture four times daily. He added to this a daily dose of three fluid ounces of senna syrup to address the child’s constipation (senna was also a vermifuge, capable of removing intestinal worms.) Whether bowel problems were a part of her overall condition, a side effect of confinement to bed, or the result of poor diet cannot be known.

When Ida’s bowels had still not moved by her fourth day at Great Ormond Street, Dickinson wrote an even more powerful prescription. She was to be given 11 grains of calomel (mercury chloride), with sugar if required to get it down; three fluid ounces of senna syrup; and three fluid ounces of cod liver oil twice daily. Her potassium bromide dosage was also increased.

This combination produced a remarkable change in Ida. The ward staff reported that following four bowel movements, her screaming and rocking quieted noticeably, her sleep pattern improved, and she became more engaged with the world around her.

By 29 November, the situation was very much improved. Dickinson’s notes read: ‘Bowels regular. No screaming. Appears to notice things rather more than she did. A book was given her today and after a while she tore a picture out of it’ (ibid.).

Getting Ida to eat proved to be more difficult than expected, however. She would not feed herself properly, biting the middle out of a piece of buttered bread rather than eating the whole piece, and showing evidence of swallowing problems. The ward nurses were only able to feed her bread soaked in beef tea.

Feeding problems may have contributed to a dramatic worsening of symptoms within the first week of December. Ida began screaming and rocking again, and her constipation returned. It took two very difficult weeks of treatment changes before improvements returned. ‘Still restless. Screams and gets in a passion beating herself and the bed with no apparent cause,’ Dickinson wrote on one visit. ‘In much the same condition as last note—Bites her jacket, stuffing it into her mouth,’ he noted a few days later. But by 21 December, Ida was again moving her bowels normally, and no longer rocking in her bed and screaming. Dickinson remarked that for the first time she exhibited normal play behaviour for a child her age, playing with a doll (ibid.).

Ida went