Understanding the Mind in the Making
A history of autism, attention and the developing child and what it means for families today.
A HOPE HEALTH & HEALING GUIDE FOR FAMILIES
What to Expect
Contents
A note before we begin
Part One - How these conditions were first seen
Part Two - How our understanding changed (and corrected itself)
Part Three - What the numbers tell us
Part Four - PANS and PANDAS: a separate, and unfinished, story
Part Five - How care and attitudes have been transformed
Part Six - Where this leaves us: the view from Hope Health & Healing
A hopeful conclusion
Abbreviations and terms explained
References
Image credits and licences
A note before we begin
This is a long form article, written for parents and curious readers rather than for doctors. Where we use a medical word or term, we explain it in plain language the first time it appears. There is also a compendium, at the end of the article, where we explain all the abbreviations and medical terms used in alphabetical order.
Our aim is to tell an honest human story: how some of the most talked-about conditions of childhood were first noticed, how our understanding has changed - sometimes for the worse before the better - and where careful medicine stands today. Throughout, we have tried to separate what is firmly established from what is still uncertain or hotly debated, because that honesty is itself part of the story. Our research is referenced by number throughout the article, with a full compendium at the end.
We focus on four threads that are often tangled together in a family's experience: autism spectrum disorder (a lifelong difference in how a person communicates, relates to others and experiences the world); developmental and speech delays (when a child reaches the ordinary milestones of growing up later than expected); attention-deficit hyperactivity disorder (a pattern of persistent inattention, restlessness and impulsiveness) and the contested conditions known as PANS and PANDAS (a proposed sudden, infection-triggered illness in children). They are different conditions, but their histories rhyme - each began as something glimpsed, then named, then argued over and is still being understood today.
A long road to understanding. The conditions in this article were first described over the course of two centuries and our definitions of them are still being refined.
Image: Original diagram by Hope Health & Healing Medical Center.
Part One - How these conditions were first seen
A word borrowed from a different illness
The word autism is just over a century old. It was coined in 1911 by the Swiss psychiatrist Eugen Bleuler, director of the famous Burghölzli hospital in Zürich and the same man who gave us the word schizophrenia. Bleuler built the term from the Greek autós, meaning 'self', to describe what he saw as a patient's withdrawal from the outside world into a private inner one. Crucially, he did not mean a childhood condition at all - for Bleuler, 'autism' was one symptom of schizophrenia in adults [1]. The modern meaning would not arrive for another thirty years, and that early confusion - autism mistaken for a form of madness - would shadow affected children for decades.
Eugen Bleuler (1857–1939), the Swiss psychiatrist who coined the word 'autism' in 1911 - originally to describe a symptom of schizophrenia, not the childhood condition we know today.
Image: National Library of Medicine, via Wikimedia Commons (public domain).
In 1943, an Austrian-American psychiatrist at Johns Hopkins Hospital named Leo Kanner published a paper describing eleven children with what he called a 'previously unreported' condition. He noted their 'extreme autistic aloneness', an anxious insistence on keeping everything the same, and a striking attachment to objects rather than people. This paper is widely regarded as the first to describe autism as a distinct condition of childhood, separate from Bleuler's adult symptom [2].
Almost simultaneously and entirely independently, a Viennese paediatrician named Hans Asperger described, in 1944, a group of children with social difficulties but often strong language and intellectual abilities - what would later carry his name as 'Asperger's syndrome' [3]. For decades Asperger was remembered as a sympathetic pioneer. More recent historical work has complicated that picture considerably. Drawing on previously unexamined Austrian archives, the medical historian Herwig Czech argued in 2018 that Asperger accommodated himself to the Nazi regime, publicly endorsed its 'racial hygiene' policies, and referred children to a Vienna clinic that took part in the killing of disabled children [4]. The historian Edith Sheffer reached similar conclusions in her book of the same year [5]. The reassessment remains debated by some scholars [6], but it has changed how the field regards the name.
The two doctors who, an ocean apart, saw the same children
Leo Kanner (1894–1981) of Johns Hopkins. His 1943 paper describing eleven children is considered the first modern account of autism as a condition of childhood.
Image: Johns Hopkins University, via Wikimedia Commons (public domain in the United States).
The restless child, described long before there was a name
The history of attention-deficit hyperactivity disorder reaches back even further. As early as 1798, the Scottish-born physician Sir Alexander Crichton described a 'mental restlessness' - an inability to attend 'with a necessary degree of constancy to any one object' - that he noticed could be present 'born with a person' from a very early age, and that interfered with schooling. His description maps remarkably well onto what we now call the inattentive presentation of the condition [7].
In the mid-1840s the condition even reached popular culture, in the form of a cautionary children's rhyme. The German physician Heinrich Hoffmann wrote 'The Story of Fidgety Philip' (Zappel-Philipp) - a boy who 'wriggled and giggled' and could not 'sit still for once at table'. It was written to amuse his own young son, not as a medical case, but it is still quoted today as an early portrait of a hyperactive child [7].
'The Story of Fidgety Philip' from Heinrich Hoffmann's Struwwelpeter (this edition 1862). The rhyme of a boy who could not sit still is often cited as an early popular portrait of hyperactivity in children.
Image: Heinrich Hoffmann, Struwwelpeter (1862 edition), Nasjonalbiblioteket (National Library of Norway), via Wikimedia Commons (public domain).
The first serious medical account
The first serious medical account came in 1902, when Sir George Frederic Still - England's first professor of child medicine - delivered a series of lectures to the Royal College of Physicians in London. He described a group of children, mostly boys, of normal intelligence who showed what he called 'an abnormal defect of moral control': they could not restrain their impulses or consider the longer-term good. Importantly, Still suspected a 'morbid physical condition' - a biological cause - rather than bad upbringing, because many of the children came from perfectly ordinary, caring homes [8]. (Popular accounts often say Still described 43 children; the careful figure is around twenty in the core group he highlighted, of whom fifteen were boys [8].)
Sir George Frederic Still (1868–1941), England's first professor of child medicine. His 1902 lectures gave the first serious medical description of what we now recognise as attention and hyperactivity problems and unusually for his time, he suspected a biological cause.
Image: Wellcome Collection (M0010755), via Wikimedia Commons (public domain).
Measuring the milestones of childhood
Our very idea of a 'developmental delay' depends on first knowing what is typical. That framework was largely built by the American psychologist and physician Arnold Gesell. From the 1920s onwards he studied large numbers of children to chart the ordinary sequence in which they sit, crawl, walk, babble and talk - the developmental milestones parents still hear about today. He believed these stages unfold in a fixed order, each child on their own timetable [9]. Around the same time, in 1925, the profession of speech and language therapy was taking shape: a small group of specialists in the United States founded what would grow into a body of nearly a quarter of a million members a century later [10]. For the first time, a child who was slow to talk could be seen, measured and helped.
A sudden illness and a much older clue
The youngest of our four stories is PANS and PANDAS. The clue that led to it, however, is old. Doctors had long known that Sydenham's chorea - a movement disorder that can follow a streptococcal throat infection and rheumatic fever - is often accompanied by obsessive and compulsive behaviours [11]. In other words, an infection somewhere in the body could, it seemed, disturb the brain. In 1998, the American researcher Dr Susan Swedo and colleagues at the United States National Institute of Mental Health described fifty children who had developed sudden obsessive-compulsive symptoms and tics apparently triggered by streptococcal infection. They named the pattern PANDAS - Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections [12]. We return to this still-contested story in its own section below.
Part Two - How our understanding changed (and corrected itself)
The cruellest mistake: blaming mothers
For much of the twentieth century, autism was wrongly blamed on parents. The idea of the 'refrigerator mother' - that autism was caused by cold, emotionally distant mothering - was popularised above all by the psychologist Bruno Bettelheim in his 1967 book The Empty Fortress [13]. It was a catastrophe for families, heaping guilt on parents who were already struggling. The theory has been thoroughly discredited. The psychologist Bernard Rimland, himself the father of an autistic son, argued forcefully against it, and a landmark 1977 study of twins showed that autism is strongly heritable - running far more often in both identical twins than could be explained by parenting [14]. The 'bad mother' explanation collapsed, though it lingered longer in some countries than others.
“Grieve if you must, for your own lost dreams. But don’t mourn for us. We are alive. We are real. And we’re here waiting for you.”
From categories to a spectrum
How autism is defined has shifted markedly over the decades, and the definitions matter because they decide who is counted. The standard reference used by many clinicians worldwide is the Diagnostic and Statistical Manual of Mental Disorders - usually shortened to the DSM, and published by the American Psychiatric Association. Autism only became a distinct category in its third edition in 1980; before that, affected children were often filed under 'childhood schizophrenia', a hangover from Bleuler [15]. The fourth edition, in 1994, added Asperger's disorder as a separate label. Then, in 2013, the fifth edition did the opposite: it folded the separate labels into a single, broad autism spectrum disorder, recognising that these were variations along a continuum rather than wholly separate conditions [15]. The British psychiatrist Lorna Wing - herself the mother of an autistic daughter - had introduced the very idea of an autism 'spectrum' in 1981, and it was her thinking that ultimately shaped the modern view [16].
Attention-deficit hyperactivity disorder travelled a similar path of renaming. It appeared in the DSM in 1968 as 'Hyperkinetic Reaction of Childhood', became 'Attention Deficit Disorder' in 1980, and took its current name in 1987 [17]. For most of this time it was assumed to be a condition children simply grew out of; only more recently has it been accepted that it frequently continues into adulthood [17]. Children's language problems were reclassified too: in 2016–17 an international panel of experts agreed to replace the older term 'specific language impairment' with developmental language disorder, a clearer label for lasting language difficulties not explained by another condition [18].
The vaccine scare that wasn't true
No account of autism's modern history can skip the most damaging false alarm of all. In 1998, a British doctor named Andrew Wakefield and colleagues published a paper in The Lancet suggesting a possible link between the measles, mumps and rubella (MMR) vaccine and autism. Vaccination rates fell and measles returned. The work later collapsed under scrutiny: an investigation revealed manipulated data and undisclosed financial conflicts of interest. The Lancet fully retracted the paper in 2010; the General Medical Council struck Wakefield off the United Kingdom medical register the same year; and in 2011 the British Medical Journal described the study as 'an elaborate fraud' [19].
The reassuring truth is that the evidence against any link is overwhelming. A Danish study of 537,303 children found no association [20]. A second, even larger Danish study of 657,461 children, published in 2019, again found no increased risk of autism in vaccinated children - not overall, not in vulnerable subgroups, and not in any period after vaccination [21]. The MMR vaccine does not cause autism.
A new way of seeing: neurodiversity
Alongside the medical story runs a powerful change in attitude, driven largely by autistic people themselves. From the 1990s, a movement grew around the idea of neurodiversity - that variations such as autism and attention-deficit hyperactivity disorder are a natural part of human diversity, to be understood and accommodated rather than simply treated as defects. The Australian sociologist Judy Singer is widely credited with coining the term in 1998, and the journalist Harvey Blume helped popularise it that same year [22]. The movement has reshaped language and expectations, and it sits in a careful, respectful tension with the medical view - a tension we hold in mind throughout this article. Many families want both: acceptance of who their child is, and active help with the things that cause the child distress.
Part Three - What the numbers tell us
Statistics about these conditions are easy to misread, so it helps to hold two ideas at once. The numbers recorded have risen dramatically over the past few decades - but most experts believe this reflects better recognition rather than a true epidemic. Here is the picture, drawn from the most authoritative sources.
Autism: from 1 in 150 to 1 in 31
In the United States, the Centers for Disease Control and Prevention runs a careful surveillance programme that has tracked autism among eight-year-old children since the year 2000. The figure has risen steadily, from about 1 in 150 children in 2000 to 1 in 31 (3.2%) in the most recent data, for 2022 [23]. That is roughly a fivefold increase in two decades.
Recorded autism among eight-year-olds in the United States has risen about fivefold since 2000. Most researchers attribute the rise chiefly to broader definitions, greater awareness and better identification rather than a true increase.
Image: Data: United States Centers for Disease Control and Prevention (ADDM Network). Chart by Hope Health & Healing Medical Center.
Globally, the World Health Organization estimates that around 1 in 100 children are autistic, with a more recent calculation across all ages of about 1 in 127 people [24]. Boys are diagnosed more often than girls - the true ratio is probably close to three to one - but a major review concluded that girls are systematically under-recognised, partly because they are better at masking their difficulties and partly because the diagnostic criteria were largely built around how the condition looks in boys [25]. On average, children are not diagnosed until around four to five years of age, even though reliable diagnosis is possible by the age of two [26].
Attention, speech and the wider picture
Attention-deficit hyperactivity disorder is more common still. In the United States, about 11.4% of children - roughly one in nine - have ever been diagnosed [27], and worldwide estimates for children cluster around 5–7% [28]. For the first time, the Centers for Disease Control and Prevention has also measured it in adults, finding that about 6% of American adults currently have a diagnosis, more than half of whom were first identified in adulthood [29]. Speech and language delays affect an estimated 5–8% of preschool children [30], and around one child in six in the United States has some form of developmental difference [31].
Putting the conditions in perspective. These figures come from different studies and methods, so they are approximate, but they show the relative scale: developmental differences and attention problems are common, autism is less so, and PANS/PANDAS is rare.
Image: Sources as labelled. Chart by Hope Health & Healing Medical Center.
The picture closer to home: the Gulf and the United Arab Emirates
Reliable local figures are harder to find, and most experts believe the region's conditions are under-counted rather than genuinely rarer. An early study of three-year-old Emirati children, published in 2007, estimated a rate of pervasive developmental disorder of about 29 per 10,000 [32]; a more recent estimate cited by Khalifa University puts autism at around 1 in 146 births in the United Arab Emirates [33]. Across the Gulf states, reported autism rates have ranged widely - from roughly 1.4 to 29 per 10,000 - almost certainly reflecting differences in screening and access to diagnosis rather than real differences between countries [34]. Encouragingly, screening is expanding: in Abu Dhabi, more than five thousand developmental screenings carried out in 2023–24 found that about 18% of children under three showed potential developmental concerns warranting assessment [35]. The same UAE study that looked at autism also found that nearly 10% of three-year-olds had a delay in the language domain of a standard screening test [36].
Why have the numbers risen?
This is the question parents ask most, and the honest answer is reassuring. The consensus is that the rise is driven mainly by four things: broadened definitions that capture milder presentations; greatly increased awareness among parents, teachers and doctors; better and more systematic screening; and 'diagnostic substitution', whereby children once labelled with an intellectual disability or 'childhood schizophrenia' are now correctly identified as autistic [37]. For attention-deficit hyperactivity disorder, a careful analysis spanning three decades concluded that, once you account for changes in how studies were done, 'the true prevalence of the disorder did not increase' - the rise is in diagnosis, not in the condition itself [38]. A genuine, smaller real increase cannot be entirely ruled out, but the bulk of the change is better seeing, not more disorder.
Part Four - PANS and PANDAS: a separate and unfinished story
Because PANS and PANDAS are frequently misunderstood - and because the science is genuinely unsettled - they deserve their own section, and a careful, balanced telling. We will be clear throughout about what is established and what is still disputed.
What the names mean
PANDAS stands for Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections. PANS - Paediatric Acute-onset Neuropsychiatric Syndrome - is a broader term introduced in 2012 to include sudden-onset cases that are not linked to streptococcus [39]. The defining feature, as described by those who proposed it, is the suddenness: parents often recall the exact day their child changed, describing a 'ferocious' onset of obsessive thoughts, compulsive rituals, anxiety, irritability, tics, a sudden refusal of food, deteriorating handwriting, bed-wetting or a collapse in school performance - symptoms that seem to arrive 'out of the blue' [40].
Streptococcus bacteria. The PANDAS hypothesis proposes that, in some children, the immune response to a streptococcal infection mistakenly affects the brain - but a clear biological basis has not been established, and the idea remains debated.
Image: United States Centers for Disease Control and Prevention, via Wikimedia Commons (public domain).
The proposed mechanism - a hypothesis, not a proven fact
The idea behind the name is that an infection sets off an immune reaction that, by mistake, affects the brain. Dr Swedo described it in terms of 'molecular mimicry': the streptococcus bacterium displays molecules that look very like molecules in the body's own tissues, including the brain, so that antibodies made to fight the infection may also react with the brain - inflaming a region called the basal ganglia and producing obsessive thoughts and tics [41]. It is important to be clear: this is a hypothesis. A 2018 Canadian review concluded that, to date, biological studies have not shown children meeting the criteria to have a clear immune cause, and that consistent evidence of brain inflammation is lacking [42].
Why it remains controversial
PANDAS is often called one of the most controversial diagnoses in paediatrics. It is not listed as a distinct condition in the DSM [43]. Long-term studies have generally failed to confirm the central claim that new infections reliably trigger flare-ups [44], and critics point out that many illnesses - epilepsy, for instance - can begin suddenly and dramatically, so abrupt onset is not by itself proof of this particular cause [45]. There is also no validated diagnostic test: a commercial blood test marketed to detect it performed 'no better than chance' in independent evaluation [46]. Major bodies are cautious. The American Academy of Child and Adolescent Psychiatry calls the conditions rare and the science 'evolving' [47]; the British Paediatric Neurology Association concluded in 2021 that there was 'insufficient evidence' even to issue a formal guideline [48].
What about treatment?
Here too the evidence is mixed, and this is where families must be most careful. The mainstays recommended by expert consensus are, reassuringly, the standard, well-established treatments for childhood obsessive-compulsive disorder: a talking therapy called cognitive behavioural therapy, and where needed, the usual medicines for childhood obsessive-compulsive disorder [49]. The more aggressive treatments are far less certain. An early, small trial in 1999 suggested benefit from an immune treatment called intravenous immunoglobulin [50] - but a larger and more rigorous trial in 2016 found it was no better than a placebo [51]. These immune treatments are also very expensive and not approved for this use. The balanced conclusion of independent reviewers is that the evidence for antibiotic and immune-based therapies is of low quality, and that such treatments should be used only with specialist guidance and preferably within a clinical trial [42].
How common is it? Genuinely uncertain. The best available estimate, from a 2023 study, is an annual rate of roughly 1 in 11,765 children - which is to say, rare [52]. We include PANS and PANDAS in this article because families do encounter them, and because a sudden, dramatic change in a previously well child always deserves a thorough medical look. But we do so with the honesty the science demands: this is a real area of active research, not a settled diagnosis with a proven cure.
Part Five - How care and attitudes have been transformed
From the asylum to the classroom
Perhaps the greatest change of all is in how society treats these children. For roughly the first half of the twentieth century, the dominant response to disability was segregation: children who were 'different' were too often hidden away in institutions, and in the darkest chapter, under the Nazi regime, tens of thousands of disabled people were murdered [53]. The tide turned slowly. Televised exposés of institutional neglect, landmark court cases and the tireless work of parents drove a movement towards community living; in the United States, the number of people in large institutions for those with intellectual and developmental disabilities fell from over 207,000 in 1977 to about 33,000 by 2021 [54].
Education was transformed too. Before 1975, more than a million American children with disabilities were simply excluded from public schools. A single law - the Education for All Handicapped Children Act, later renamed the Individuals with Disabilities Education Act - changed that, and by 2022–23 more than eight million children with disabilities were being educated in mainstream and specialist settings [55]. The principle that every child has a right to learn, and to do so alongside their peers wherever possible, is now taken for granted - but it was hard-won within living memory.
A summary of the historical shift: from blame, segregation and stigma towards biological understanding, inclusion and acceptance.
Image: Original diagram by Hope Health & Healing Medical Center.
How treatment itself has evolved
Early structured treatment for autism was dominated by intensive behavioural training, pioneered by the psychologist Ivar Lovaas from the 1960s. His widely publicised 1987 study reported that nearly half of children given very intensive one-to-one therapy reached 'normal' functioning, against just 2% of a comparison group [56]. That claim built the reputation of what is now called applied behaviour analysis. It has also drawn serious criticism: Lovaas's early methods included punishments now regarded as unacceptable, and many autistic adults object to approaches aimed mainly at making children appear 'indistinguishable' from their peers rather than at the child's own wellbeing [57]. Modern practice has largely abandoned those harsh methods, and the careful evidence today is positive but modest - early intervention helps with skills and daily functioning, but it is not a 'cure' [58].
The clear lesson of the past few decades is that no single therapy is the whole answer. The field has moved towards a multidisciplinary, whole-child approach: speech and language therapy, occupational therapy, educational support and family support working together, begun as early as possible, when the developing brain is most responsive [59].
Popular culture and the public imagination
Films and television have shaped how the public pictures these conditions - for better and worse. The 1988 film Rain Man, in which Dustin Hoffman played an autistic savant, has been called the foundational popular portrait of autism, and it undoubtedly brought the word into everyday conversation [60]. But it also fused autism with extraordinary 'savant' talents in the public mind, when in reality only about one autistic person in ten has such abilities [61]. More recent portrayals - from Sesame Street's character Julia to a wave of autistic self-advocacy - have helped shift the story from tragedy towards acceptance, and the leading advocacy organisation that once spoke of a 'cure' removed that word from its mission in 2016 [62].
Part Six - Where this leaves us: the view from Hope Health and Healing
All of this history leads to a single, hopeful idea that guides our work at Hope Health & Healing Medical Center in Dubai: that for many children, autism, developmental delay and speech delay are not simply behaviours to be managed, but conditions with underlying medical contributors that deserve thorough investigation. As our founder and Medical Director, Dr Lilya Chub - a doctor with more than twenty-seven years of international experience, board-certified in both family medicine and neurology - puts it, the clinic's work often begins where others have stopped looking.
A detective-like approach
Rather than treating a label, we try to understand the whole child. Working as a coordinated team - including consultant specialists in immunology (the study of the immune system) and neurology (the study of the nervous system), and a clinical dietitian - we look carefully for factors that can affect a developing brain. These can include neuro-inflammation (inflammation affecting the brain), problems with the immune system, nutritional and vitamin deficiencies (including a particular shortage of a B-vitamin in the brain known as cerebral folate deficiency), disturbances of the gut and its community of microbes (the so-called gut–brain axis), and exposure to toxins such as heavy metals.
We want to be candid about the science here, because honesty is the theme of this whole article. The links between the gut, the immune system, nutrition and brain development are a genuine and active field of research, and the associations are real - but much of the evidence remains correlational rather than proven, and findings vary between studies [63]. That is precisely why our approach is medical and measured: we investigate thoroughly, we treat what we find under proper medical supervision, and we pursue these avenues alongside - never instead of - the well-established developmental, educational and behavioural support a child needs. We do not promise cures. We promise to look properly, and to care for the whole child.
Case study: from non-verbal to multilingual
When he first came to us, the little boy was four years old and could not speak. He had been diagnosed with severe autism, scoring 110 on the Autism Treatment Evaluation Checklist - a questionnaire completed by parents in which higher scores indicate more severe symptoms. He was hyperactive, made no eye contact, had severe tantrums and would harm himself; he ate almost nothing and barely slept.
Our team carried out a comprehensive medical investigation. This included detailed testing for food intolerances, a course of anti-fungal treatment, a carefully supervised treatment to remove heavy metals from the body (a process called chelation), support for his immune system and targeted nutritional supplementation - all tailored to what the testing revealed.
Today, he is seven years old and attends a mainstream school. He speaks three languages - Arabic, English and Amharic - fluently, excels in mathematics and reading, interacts normally with other children, and is completely off all of his previous medications. His is one story, and every child is different; but it captures why we believe in looking deeper.
(Read more at www.hhhmed.com/stories.)
Families tell this story in their own words too. As one parent, Jyothi Chandran, wrote of her son's care with us: 'With her care, dedication, and expertise, we have seen huge improvement in our son's progress in just six months - something we once thought was impossible… What makes Dr Chub so special is her ability to find and treat the root cause of our son's problems - something no other doctor was able to do' [64].
A hopeful conclusion
The history we have traced is, in the end, an encouraging one. We began with a borrowed word and a blamed mother, with children hidden away and conditions mistaken for madness. We arrive at a world that recognises these children far earlier, understands far more about their biology, educates them alongside their peers, and increasingly listens to them. The numbers have risen not because childhood has changed, but because our eyes have opened.
If you are the parent of a child who is slow to speak, who struggles to attend, who relates to the world differently, or whose behaviour changed suddenly and frightened you, the most important lessons of this history are simple. Early help matters, because the young brain is remarkably adaptable. Your child's difficulties are not your fault. And it is always worth asking whether there is an underlying medical contributor that careful investigation might uncover.
That belief - that there is almost always more to understand, and more that can be done - is the heart of our work. If this article has raised questions about your own child, you are warmly welcome to learn more about our approach at www.hhhmed.com. As we like to say: when others conclude that nothing more can be done, that is often where our work begins.
Lilya Chub MD | Medical Director
David Macauley | General Manager
GLossary of Abbreviations and Medical Terms Explained
Throughout this article we have tried to explain each medical word in plain language the first time it appears. For ease of reference, the main abbreviations and terms are gathered here in alphabetical order.
ADD - Attention Deficit Disorder
An earlier name (introduced in 1980) for what is now called attention-deficit hyperactivity disorder. See below.
ADHD - Attention-Deficit Hyperactivity Disorder
A condition marked by persistent inattention, restlessness (hyperactivity) and acting without thinking (impulsiveness). It often continues into adult life.
Anti-neuronal antibodies
Antibodies (immune proteins that normally fight infection) that mistakenly react with the body's own nerve cells. They are part of the proposed - but unproven - explanation for PANS and PANDAS.
ASD - Autism Spectrum Disorder
A lifelong difference in how a person communicates, relates to other people and experiences the world. 'Spectrum' reflects that it varies widely from person to person.
Basal ganglia
A group of structures deep within the brain involved in movement and habit. It is the region thought to be affected in PANDAS.
Cerebral folate deficiency
A shortage, specifically in the brain, of folate (a B-group vitamin important for healthy brain development), even when blood levels can appear normal.
Chelation
A medical treatment that uses specific medicines to bind and remove heavy metals (such as lead or mercury) from the body. It must be carried out under careful medical supervision.
DSM - Diagnostic and Statistical Manual of Mental Disorders
The reference book, published by the American Psychiatric Association, that clinicians use to define and diagnose mental health and developmental conditions. Editions are numbered: DSM-III (third edition, 1980), DSM-IV (fourth, 1994), DSM-5 (fifth, 2013).
Developmental delay
When a child reaches the ordinary milestones of growing up - such as sitting, walking, talking - later than usually expected.
Developmental language disorder
A lasting difficulty with understanding or using language that is not explained by another condition. Agreed in 2016-17 as the preferred term, replacing 'specific language impairment'.
Dyspraxia
A difficulty with planning and coordinating physical movement.
Gut-brain axis
The two-way communication between the digestive system (and the community of microbes living in it) and the brain.
ICD - International Classification of Diseases
The World Health Organization's reference system for classifying diseases and health conditions, used worldwide alongside the DSM.
Intravenous immunoglobulin
A treatment, given through a vein, made from antibodies pooled from many blood donors, sometimes used to influence the immune system. Its value in PANS/PANDAS is not established.
MMR vaccine
The combined vaccine against measles, mumps and rubella. Extensive research has shown it does not cause autism.
Molecular mimicry
The idea that a germ can display molecules so similar to the body's own that the immune response against the germ also attacks the body's tissues. It is the proposed mechanism behind PANDAS.
Neurodiversity
The view that variations such as autism and attention-deficit hyperactivity disorder are a natural part of human diversity, to be understood and accommodated rather than only treated as defects.
Neuro-inflammation
Inflammation (the immune system's response to injury or irritation) affecting the brain.
PANDAS - Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections
A proposed condition in which a streptococcal infection (a common throat infection) is thought to trigger the sudden onset of obsessive behaviours and tics in a child. It remains scientifically debated.
PANS - Paediatric Acute-onset Neuropsychiatric Syndrome
A broader term (introduced in 2012) for the sudden onset of obsessive behaviours, anxiety and related symptoms in a child, where the trigger is not necessarily streptococcus. It remains scientifically debated.
Refrigerator mother
A discredited mid-twentieth-century theory that wrongly blamed autism on cold, emotionally distant mothering.
Sensory processing differences
Differences in how a person experiences and responds to everyday sensations such as sound, light, touch or texture.
Speech and language therapy
Professional support that helps people who have difficulty with speaking, understanding language or communicating.
Sydenham's chorea
A movement disorder, with jerky involuntary movements, that can follow a streptococcal infection and rheumatic fever; it is often accompanied by obsessive behaviours. It was an early clue that led to the idea of PANDAS.
Tourette syndrome
A condition characterised by tics - sudden, repeated movements or sounds that a person finds hard to control.
Article References
[1] "History of autism", Wikipedia; and The Autism History Project, University of Oregon (Bleuler coining 'autism', 1911). <https: data-preserve-html-node="true"//en.wikipedia.org/wiki/History_of_autism> ↑ Back to article
[2] Embryo Project Encyclopedia, Arizona State University, "'Autistic Disturbances of Affective Contact' (1943), by Leo Kanner". <https: data-preserve-html-node="true"//embryo.asu.edu/pages/autistic-disturbances-affective-contact-1943-leo-kanner> ↑ Back to article
[3] Embryo Project Encyclopedia, Arizona State University, "Hans Asperger (1906–1980)". <https: data-preserve-html-node="true"//embryo.asu.edu/pages/hans-asperger-1906-1980> ↑ Back to article
[4] Czech H., "Hans Asperger, National Socialism, and 'race hygiene' in Nazi-era Vienna", Molecular Autism (2018). <https: data-preserve-html-node="true"//link.springer.com/article/10.1186/s13229-018-0208-6> ↑ Back to article
[5] Edith Sheffer, Asperger's Children: The Origins of Autism in Nazi Vienna (W. W. Norton, 2018). <https: data-preserve-html-node="true"//dsq-sds.org/article/id/864/> ↑ Back to article
[6] Zeitschrift für Kinder- und Jugendpsychiatrie und Psychotherapie (2024), reassessment of the Asperger debate. <https: data-preserve-html-node="true"//econtent.hogrefe.com/doi/full/10.1024/1422-4917/a001001> ↑ Back to article
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