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Autism
A Social and
Medical History

Mitzi Waltz
Second Edition
Autism
 Mitzi Waltz

Autism
A Social and Medical History

2nd ed. 2023

Mitzi Waltz
Athena Institute
Vrije Universiteit Amsterdam
Amsterdam, The Netherlands

ISBN 978-3-031-31014-0    ISBN 978-3-031-31015-7 (eBook)

https://doi.org/10.1007/978-3-031-31015-7

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 Preface: Autism, and How We Got Here

In May 2009, as I began work in earnest on the first edition of this book,
my inbox filled up with a flurry of emails from adults with autism and from
researchers who worked closely with them. All were concerned with being
heard in the ongoing process to revamp the autism diagnostic guidelines
for the upcoming fifth version of the Diagnostic and Statistical Manual of
Mental Disorders. Better known as the DSM, this is the Bible for diagnosis
and billing used by psychologists and psychiatrists in the US and has a
worldwide impact as well.
The past four versions had featured no input from those whom the
DSM describes as ‘autistic.’ However, the sociocultural context of autism
was changing, and one measure of that was the increased importance of
people with autism in debates about diagnosis and other issues.
At the time, to be diagnosed with ‘mental disorder no. 299, Autistic
Disorder,’ a person had to exhibit ‘qualitative impairment in social interac-
tion … qualitative impairments in communication … [and] restricted
repetitive and stereotyped patterns of behavior, interests and activities’
(American Psychiatric Association, 1994). Some further specifics were
included under the descriptions of each of these criteria. Compared to
diagnosis of Down syndrome, with its characteristic chromosomal and
physical differences, deciding whether a person is on what we now call the
autism spectrum was not at all straightforward. Nor is diagnosis in child-
hood a reliable predictor of adult outcomes, or even what kinds of special
education methods, medical treatments or behaviour management
schemes, if any at all, are most likely to be of use.

v
vi PREFACE: AUTISM, AND HOW WE GOT HERE

As a result of interventions by autistic adults, sensory-perceptual issues

appeared in the DSM-V for the first time as something that often affects
people with autism and that should be considered when making a diagno-
sis, though it was not made a diagnostic criterion. It remains remarkable
that it took so long for the internal experience of autism, rather than
aspects of autism that may puzzle or bother non-autistic people, to become
a part of how autism is officially defined.
But when you know about the history of autism, it is not a surprise. As
Laurence Arnold, the first autistic adult to serve on the Board of the UK’s
National Autistic Society, put it:

Autism is a word, with a history and connotations. It is a semiotic pointer

[and] what it signifies is governed not by any natural laws, but by the rules
of communication theory, whereby the originator of the message may not
be completely understood by the receiver because of a variety of cultural,
neurological, environmental and simply accidental and incidental interfer-
ence … [Autism] is not inherently wrong, just different, but that difference
and the varying degrees of that difference are heavily negatively nuanced in
a society and environment to which we are not maximally adapted. (Arnold,
L., 2009, personal communication, 15 May)

This condition that has existed throughout human history did not even
gain a name until 1943, and the process of attaching any depth of under-
standing to that name has been beset by controversy, conflict and even
fraud. Eighty years after the word ‘autism’ was first made semi-official
shorthand for a pattern of child development and behaviour, no agree-
ment has been reached about even the most basic issues, such as causation.
How we got here, and what that process has meant for autistic people,
their families, and the professionals tasked with teaching and supporting
them, is the topic of this book.
It is not a straightforward story of medical progress or increasing social
acceptance but a convoluted tale in which ideas seem to return again and
again, regardless of the evidence base. A disparate chorus of voices emerges
from history, with much to tell us. The story of autism weaves in and out
of the histories of medicine and psychiatry, as well as those of social exclu-
sion and inclusion, eugenics, special education and the disability rights
movement.
I have attempted to relate this history through its impact on the lives of
autistic people and their families, as well as through facts and statistics. In
 PREFACE: AUTISM, AND HOW WE GOT HERE vii

the case of historical events, some necessary licence has been taken with
imagining what might have been. In describing the short life of Ralph
Sedgwick in Chap. 1, for example, I added colour from historical accounts
of everyday activities in his London neighbourhood to turn a set of case
notes and census records into something more like a real boy.
It is also by no means the whole story. Entire volumes will need to be
written to illuminate what happened outside the US and Europe, where
the diagnostic category first emerged—although in this revision, I have
also made an effort to include more sources from outside the Global
North and to consider the correlations between the development and
deployment of autism as a diagnostic category, and racism, colonialism
and eugenics.
New evidence is continually being gathered, and autism research has
taken a direction in the last decade that is surprising—and for a student of
the history of autism, dispiriting. In addition, each person ever diagnosed
with autism has an individual history that, while it intersects with the story
told here, also has its own trajectory. These individual stories and the his-
tory of autism in general form a part of our human history, from which we
still have much to learn about neurodiversity and inclusion.
Like many disability historians, I have a personal stake in the tale I have
chosen to tell. My family includes several people who are on the autism
spectrum, so does my circle of friends and colleagues. In my work as an
academic, I have mentored and learned from dozens of autistic university
students. As a researcher, I have been involved in many projects about
autism, on topics as diverse as development of staff training, media images,
housing, employment, parent support and, most recently, the health needs
of autistic women. In my current role, I am busy with raising awareness of
autism (and disabilities in general) in the context of global health.
This personal involvement has given me a ringside seat for many of the
developments that I will describe in the chapters that follow, and has con-
tributed to continuing hope that we can eventually become much better
at supporting autistic people to have great lives in which their talents and
gifts will be appreciated, exactly as they are.

AmsterdamMitzi Waltz
January 2023
 Acknowledgements

Revisiting this book ten years later, I remain grateful to those who made
the first version possible. The list of those who have supported me and
sparred with me includes my PhD supervisors at the University of
Sunderland, Paul Shattock and John Storey, and my ‘critical friend’ Alan
Roulstone; my former colleagues at the Autism Centre for Education and
Research at the University of Birmingham: Karen Guldberg, Glenys Jones,
Rita Jordan, Andrea MacLeod, Sarah Parsons and Kerstin Wittemeyer;
and my former Sheffield Hallam University Autism Centre colleagues:
Nick Hodge, Luke Beardon, Nicola Martin and Sue Chantler. The Athena
Institute team at Vrije Universiteit Amsterdam also deserves thanks for
giving me a supportive and intellectually challenging nest, as has the
Medical and Health Humanities group within the VU’s History depart-
ment, especially Manon Parry. Disability Studies in Nederland has been a
crucial partner when it comes to maintaining a critical perspective and
placing the history of autism within the wider perspective of disability
history.
This project would not have been possible without the many people
who have helped me with archival research or agreed to be interviewed. I
can’t name everyone, but special thanks are due to Great Ormond Street
Hospital, the National Autistic Society, the Autism Society of America, the
University of Chicago, the MIND Institute, the Wellcome Trust, Thomas
Anders, Laurence Arnold, John Clements, Uta Frith, Steven Kapp, Wenn
Lawson, Gary Mesibov, Damian Milton, Ari Ne’emen, and the late
Bernard Rimland and Lorna Wing.

ix
x ACKNOWLEDGEMENTS

Finally, the inspiration to keep working on this project, the impetus to

revise and update it, comes from the very important autistic people in my
life. Knowing and listening to you has changed my life and my ideas about
autism. You are already writing the next chapter of this history.

A Word About Language

In autism, language use matters. Community preferences differ from
country to country, and from person to person. In the UK, ‘impairment
first’ language—autistic person—is preferred over ‘person first’ language—
person with autism. The reverse is the case in the Netherlands and some
other countries. I prefer the first usage, but will sometimes use both in this
book, along with the more cumbersome ‘on the autism spectrum.’
The term ‘intellectual disabilities’ is generally used rather than the UK
term ‘learning difficulties,’ to avoid confusion, as in some other countries
learning difficulties or disabilities is used to refer to conditions like dyslexia
and dyspraxia.
Original language used in historical sources is sometimes retained,
especially when it appears in direct quotes, including terms (such as ‘sub-
normality hospital’ or ‘mentally retarded’) that are today seen as offensive.
 Contents

1 A Nameless Difference  1

2 Autism Before and After the Enlightenment 11

3 Workhouses,
 Asylums and the Rise of the Behavioural
Sciences 29

4 The Social Construction of Autism 53

5 From ‘Pathological Motherhood’ to ‘Refrigerator Mothers’ 83

6 Bedlam, Behaviourism and Beyond 99

7 Parent-Blaming, Parent Power and Research121

8 Parents Behind the Wheel: Danger Ahead?155

9 Autism Self-Advocacy: Achievements and Challenges185

10 Genetics, Genomics and the Medical Model of Autism203

xi
xii CONTENTS

Afterword: A New Politics of Autism?237

References241

Index275
 CHAPTER 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 young
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,’ wrote the nurse at the top of a blank journal
page, misspelling the child’s name, then paused with pen poised to take
down the doctor’s notes. For quite some time Dr Dickinson sat watching,
occasionally asking questions of the ward sister and consulting 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

© The Author(s), under exclusive license to Springer Nature 1

Switzerland AG 2023
M. Waltz, Autism,
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2 M. WALTZ

her lap even when at rest as she talked about her son. Dr Dickinson now
knew the child’s medical history, but little about his day-to-day life or that
of his family.
Ralph was the first child born to this working-class Islington couple.
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 by helping with a book stall on the street
market. Books were growing in popularity as literacy increased in England,
but there were still days when Ralph’s father 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. Her days were
an endless round of cleaning, washing, cooking and trying to figure out a
way to make her husband’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 cer-
tainly 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 from the unwelcome sight,
holding her swollen belly protectively.
At their interview yesterday, Margaret had looked up at Dr Dickinson
with pleading eyes at the end of this anecdote, seeking affirmation that her
son’s condition had been an accident of fate, not her fault. ‘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 Ralph 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 serious problems soon
enough. He had the constant cough of a child kept indoors in a small,
 1 A NAMELESS DIFFERENCE 3

smoky room most of the day, breathing the foul air of central London
when his mother took him out to buy food or do her washing in the
courtyard. He had the sunken chest and slightly bowed legs 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?’
Margaret’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 whit-
ening water with chalk or 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. 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 epidem-
ics 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 some-
thing 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. When
other lads of two or three were toddling about in the grimy courtyard,
4 M. WALTZ

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 finger-and-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 washer-
woman 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 imbe-
cile. 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 new 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.
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