Imagine a chain of scandals focused on a huge number of very vulnerable and fragile people. Picture a horrific mixture of mistreatment and neglect that is institutional, subjecting hundreds of people to completely the wrong “care”, and ensuring that many of them are effectively locked up, often for years. Then add an element that is even more horrific: seemingly endless acts of violence and torture.
Now think about the prospect of such stories piling up: by rights, you would expect some kind of tipping point. But in this case, the sheer number of scandals seems to somehow normalise them, so that even some of the most awful remain overlooked, even among people who think of themselves as progressive and socially concerned. We think we care, but our concern and empathy fall woefully short.
This is the very real story of over a decade of horror inflicted on learning-disabled and autistic people. Self-evidently, it is part of a much longer saga of cruelty, neglect and bigoted attitudes that goes back centuries. But this latest phase has a clear recent timeline, starting with the BBC’s exposure of hideous abuse at the privately run Winterbourne View hospital near Bristol in 2011 and the great outpouring of anger and official remorse that followed it, largely to no avail. Even more scandals have been revealed since then, traceable to a glaring lack of accountability, let alone any meaningful action.
The places where they have happened are scattered across the UK: Devon, Norfolk, Lincolnshire, Essex, County Antrim, Cardiff, Greater Manchester and more. Last week, the story reached another awful milestone, with the publication of a second official report triggered by what happened between 2018 and 2021 at three residential schools in and around Doncaster. They were run by the Hesley Group, which is owned by Antin Infrastructure, a multinational private equity group chiefly known for investing in gas pipelines. About 82% of the children concerned were autistic; 76% had a learning disability. Two-thirds of them were more than 50 miles away from their family home. Their families had presumably been lulled into agreeing to their placements with promises of nuanced and sensitive care; for each child, the local councils in charge of the relevant budgets had paid the Hesley Group about £250,000 a year.
The three homes had been closed by government inspectors in 2021, but it took longer for details of what had happened in them – which is now the subject of a criminal investigation by police – to be made public. In October 2022, an official review found that children had suffered “direct physical abuse” and “various forms of neglect”, and that staff “had seriously breached sexual boundaries”. Then, in January this year, documents leaked to the BBC shone more light on the horrors that lay behind such words. Vinegar had been poured into children’s open cuts. One child had been locked outside in freezing temperatures, while they were naked. Others were punched and kicked in the stomach, made to sit in cold baths and force-fed chilli flakes.
More recently, there have been further details of the abuse of adults and children at Hesley Group facilities, spanning 10 years. By way of a response, last week’s forensic and exhaustive report by the government’s child safeguarding practice review panel cited more of the Doncaster homes’ failings (staff, for example, shaved black girls’ heads, seemingly to avoid having to comb their hair), and laid bare a broken national system of care and education. It set out proposals for change including radically reformed inspections and oversight, and changes to the way staff are recruited and trained. One cold fact, however, shows how dysfunctional everything is: the Hesley Group – which insists that it has undergone a major restructuring and made senior management changes – still runs educational and supported living services for people with autism and learning disabilities.
The Doncaster story sits alongside the continuing scandal centred on children and adults trapped and mistreated in facilities classified as hospitals. Winterbourne View was a case in point; so was the story of Whorlton Hall in County Durham, which was broken by a BBC Panorama documentary in 2019, and is now the subject of an ongoing criminal trial. Only a month ago, Channel 4 aired a Dispatches programme that exposed the appalling treatment of young people with autism in hospitals and treatment centres across England – which included a hospital in Kent where 18 reports of sexual assault and 24 of rape were made to the police between 2020 and 2023, but no charges have yet been brought. We should never forget Connor Sparrowhawk, the autistic and learning-disabled young man who was the victim of failings relating to vital risk assessments and who drowned in a bath at an NHS care unit in 2013; it was subsequently discovered that the NHS trust concerned had failed to properly investigate the deaths of more than 1,000 patients with learning disabilities or mental health problems over a period of four years.
Every story is horrifically vivid: I have a 16-year-old son who has autism and learning disabilities, and when each new one emerges, it heightens a sharp and nagging anxiety about what might lie ahead. The failures behind the scandals, by contrast, are rooted in systems that are massively opaque. In the case of children’s homes and residential schools, the bodies responsible include Ofsted (which failed to intervene in the Doncaster case for three years, despite hundreds of complaints), local councils and a tangle of profit-making companies. When it comes to hospitals and mental health facilities, notwithstanding improved regulatory work by the Care Quality Commission, huge questions need to be asked about the NHS, more private providers and the commissioners who staff England’s new system of integrated care boards. In both sectors, neglect and abuse often highlights what people who work in this field call “closed cultures”: secretive, shut-off ways of working that sometimes attract people with the most twisted intentions.
Late last week I spoke to Pam Bebbington, one of the key people in an inspirational organisation called My Life My Choice. She is involved in “quality checks” of supported living facilities in Oxfordshire, “making sure people are safe and happy, and not overmedicated” – and such campaigns as Don’t Lock Us Away!, founded on the straightforward insistence that “we want to get people out of the hospitals, so they can live in their own places and have support there”.
She has a learning disability, and direct experience of being incarcerated in institutions where she was terrorised. In one facility dedicated to people with learning disabilities, she told me, she was “beaten up, kept in locked rooms and restrained: when they bend your arms behind your back, they sit on you, they stand on you – no one should have that done to them”.
These things happened to her about 30 years ago – which only makes those more recent scandals seem all the more abhorrent. “It’s getting worse and worse,” she said, “and nothing’s getting done.”
How, I wondered, would she sum up what needs to change? “Respect,” she said. “That’s a word we use all the time.” We chatted on, but those seven letters had done their work, crystallising what has been denied to so many people, opening the way to all those outrages and human catastrophes. As you read this, more will be happening, in darkened rooms and locked-up wards. Here, clearly, is hideous proof of enduring prejudices and blind spots, and the fact that all our modern talk about diversity, inclusion and human rights regularly collapses into nothing. How much longer?
John Harris is a Guardian columnist
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(Video) Developing a sense of self by Bruce Hood
FAQs
What percentage of people with learning disabilities also have autism? ›
The prevalence rate of autistic spectrum conditions is higher in men (2%) than women (0.3%). 60-70% of people who have an autistic spectrum condition will also have a learning disability.
Are people with learning disabilities on the spectrum? ›Like a learning disability, autism is a lifelong condition. Autism is sometimes referred to as a spectrum, or autism spectrum disorder (ASD). Autism is not a learning disability, but around half of autistic people may also have a learning disability.
Can autism predict the consequences of an action? ›One important line of evidence suggests that children with autism are poor at predicting future events, at planning future actions and chaining action together. Prediction deficiencies are especially harmful when it comes to planning one's own actions and monitor other people's actions.
What is the mortality rate for people with learning disabilities? ›Results: Average age at death for people in state intellectual and developmental disabilities systems was 50.4-58.7 years and 61.2-63.0 years in Medicaid data, with a crude adult mortality rate of 15.2 per thousand.
What is the most common cause of death for people with learning disabilities? ›Respiratory and heart diseases are the leading causes of death for this group, and they are also more likely to have diabetes, sensory impairments, mental health problems or epilepsy.
What learning difficulties are associated with autism? ›Dyslexia and dyspraxia
Some autistic people have: problems with reading, writing and spelling (dyslexia) clumsy movements and problems with organisation and following instructions (developmental co-ordination disorder, or dyspraxia)
High-functioning autism (HFA) is an autism classification where a person exhibits no intellectual disability, but may exhibit deficits in communication, emotion recognition and expression, and social interaction.
Is learning disability a mental illness? ›A learning disability is not a mental health problem. But people with learning disabilities may also experience mental health problems. There are lots of different reasons for this.
Is autism a mental health or learning disability? ›Autism isn't a mental health problem. But if you're autistic you may be more likely to experience a mental health problem. You may also experience other conditions such as: Attention deficit hyperactivity disorder (ADHD)
What is the trauma of growing up autistic? ›People with autism experience trauma from a variety of situations. For example, they may experience name-calling, bullying, being taken advantage of, feeling isolated and rejected, and being invalidated by family or friends.
What triggers autism behavior? ›
A stressful and anxious situation can be a trigger for an autistic's behaviour. Autistic children can get extremely overwhelmed when they are faced with uncomfortable and stressful situations. Autistic children face sensory issues and are most likely to overreact or under-react when someone gets too close to them.
What are the most common autism triggers? ›Every autistic person is different, but sensory differences, changes in routine, anxiety, and communication difficulties are common triggers.
What is the most severe learning disability? ›1. Dyslexia. Dyslexia is the number one learning disability that affects people of all ages. It affects a person's reading and language processing skills.
Can people with learning disabilities succeed in life? ›And some individuals don't realize they have learning disabilities until they are adults. With the right support and interventions, however, children and adults with learning disabilities can succeed in school and life. Recognizing, accepting and understanding your learning disability are the first steps to success.
How severe is learning disability? ›It limits the brain's ability to store, process, and produce information and affects a person's ability to speak, listen, read, write, or do math. A child with a learning disability has average to above average intelligence, but he or she falls below his or her academic potential to a significant degree.
What is the most common problem with people with learning disabilities? ›The most common types of learning disabilities involve problems with reading, writing, math, reasoning, listening, and speaking. While every kid has trouble with homework from time to time, if a certain area of learning is consistently problematic, it might indicate a learning disorder.
Can learning disabilities get worse? ›Learning disabilities can present new challenges as your life changes, especially if you are adjusting to a new set of demands like a job change or parenthood. These transitions can cause stress and increase a sense of struggling.
What is the life expectancy of a disabled person? ›In 2017, the life expectancy of people with the most severe grade of disabilities was 49.7 years, while the life expectancy of people with the least severe grade of disabilities was 77.7 years.
What are three conditions that often accompany autism? ›- Gastrointestinal (GI) problems.
- Epilepsy.
- Feeding issues.
- Disrupted sleep.
- Attention-deficit/hyperactivity disorder (ADHD)
- Anxiety.
- Depression.
- Obsessive compulsive disorder (OCD)
Older epidemiological studies suggested that the IQ-related spectrum tends to be skewed to the left, i.e., a larger proportion of individuals with ASD have below average intelligence, while only few individuals with ASD may have an IQ above average.
What vitamins help autism? ›
Vitamin B6 and magnesium to ease autism symptoms
More than a dozen studies have suggested that supplementing vitamin B6 and magnesium in children with autism helps to ease symptoms, but the treatment remains controversial as each child's body will react differently to varying interventions.
- 1 Stop getting enough sleep.
- 2 Keep your melatonin low.
- 3 Stay close to the Moon.
- 4 Use blue monochromatic lights.
- 5 Mess with the pineal gland.
- 6 Stay away from oxytocin.
- 7 Reduce myelin.
- 8 Stop walking.
Untreated autism causes changes in brain function that make it more difficult for the person to control impulsive behavior or think rationally about their actions before they act on them. This can lead to situations where ASD adults are unable to live alone and take care of themselves without assistance.
What is the average life expectancy of a person with autism? ›Autism itself does not affect life expectancy, however research has shown that the mortality risk among individuals with autism is twice as high as the general population, in large part due to drowning and other accidents.
How does a person with learning disabilities feel? ›Someone who experiences problems with these abilities may feel confused, frustrated and frightened. A common symptom is short term memory loss; the individual finds it difficult to remember recent events or conversations. This can lead to them repeating stories or asking the same question over and over again.
What are 3 known causes of learning disabilities? ›- Family history and genes. Having a blood relative, such as a parent, with a learning disorder raises the risk of a child having a disorder.
- Risks before birth and shortly after. ...
- Emotional trauma. ...
- Physical trauma. ...
- Poisonous substances.
Much research has demonstrated that students with learning disabilities experience emotional distress related to their difficulties. Students with learning disabilities tend to have higher levels of emotional concerns, such as depression, loneliness, and low self-esteem, than do their peers without disabilities.
What goes on in the mind of an autistic child? ›In the autistic brain, the brain reduced connectivity, known as hypoconnectivity, allows weakly connected regions to drift apart, with sulci forming between them.” Research has shown the deeper theses sulcal pits are, the more language production is affected.
What rights do autistic adults have? ›Americans with Disabilities Act
It guarantees equal opportunity for individuals with Autism in public accommodations, employment, transportation, state and local government services, and telecommunications. The ADA was signed into law on July 26, 1990, by President George H.W.
Common signs of autism in adults include: finding it hard to understand what others are thinking or feeling. getting very anxious about social situations. finding it hard to make friends or preferring to be on your own.
What happens if an autistic person is abused? ›
Studies suggest that children on the spectrum are up to three times as likely as their neurotypical peers to be targets of bullying and physical or sexual abuse. Such maltreatment can cause severe stress and trauma, yet it often goes unrecognized or unreported.
What happened to autistic kids when they grow up? ›But more than half of kids with autism remain unemployed or unenrolled in school in the two years after high school. Roughly half of young adults with autism have never held a paying job. Many of these young adults also age out of school-based autism services and also struggle to find health care.
What are signs of trauma in autistic people? ›Symptoms of PTSD include re-experiencing the traumatic event, avoiding triggers related to the event, negative changes in mood and thinking, and hyperarousal and reactivity (DSM-5, APA, 2013).
Which parent carries autism gene? ›Since autism is less prevalent in females, autism was always thought to be passed down from the mother. However, research suggests that autism genes are usually inherited from the father. One of the most common questions asked by parents of children with autism is which parent carries the autism gene.
What are unsafe behaviors of autism? ›Some autistic people can display distressed behaviour. It includes what would normally be considered physically aggressive behaviour, such as slapping, biting, spitting or hair pulling, but can also include other behaviours if they are having a negative impact on the person or their family.
What are severe behaviors with autism? ›Individuals with intellectual and developmental disabilities, including autism, are at increased risk for engaging in problem behavior such as self-injury, aggression, and property destruction. When these behaviors are intense and frequent, they can significantly impair a child's functioning.
What is 90% of autism caused by? ›Genetics. Genetic factors may be the most significant cause of autism. Early studies of twins had estimated heritability to be over 90%, meaning that genetics explains over 90% of whether a child will develop autism.
What not to say to someone with autism? ›- “Don't worry, everyone's a little Autistic.” No. ...
- “You must be like Rainman or something.” Here we go again… not everyone on the spectrum is a genius. ...
- “Do you take medication for that?” This breaks my heart every time I hear it. ...
- “I have social issues too. ...
- “You seem so normal!
Reading disability (dyslexia) - is the most common LD, representing at least 80% of all LDs, and results from deficits in phonologic processing. Skills necessary for appropriate phonologic processing involve reading decoding, phonics, ability to produce sounds, and proper auditory capabilities.
Who is highly intelligent with learning disabilities? ›That's what happened to several famous people with learning disabilities, including Alexander Graham Bell, Albert Einstein, Bill Gates, Thomas Edison and Louis Pasteur. Alexander Graham Bell most likely had dyslexia, and he went on to invent the first practical telephone. His learning disability didn't stop him.
What mental age is severe learning disability? ›
Severe — Approximate IQ range of 20 to 34 (in adults, mental age from 3 to under 6 years). Likely to result in continuous need of support. Profound — IQ under 20 (in adults, mental age below 3 years). Results in severe limitation in self-care, continence, communication and mobility.
What do people with learning disabilities struggle with? ›A learning disability is a reduced intellectual ability and difficulty with everyday activities – for example household tasks, socialising or managing money – which affects someone for their whole life.
Is it hard to live with a learning disability? ›Learning disabilities can make routine tasks more difficult, forcing individuals to adapt their approaches and techniques based on their unique abilities and needs. Because learning disabilities include a wide range of conditions and potential symptoms, no two people will share the same experiences.
How do people with learning disabilities learn best? ›Sequence slowly, using examples. Speak clearly and turn so students can see your face. Allow time for students to process requests and allow them to ask questions. Use graphic organizers to support understanding of relationships between ideas.
What happens if a learning disability goes untreated? ›If learning disabilities remain untreated, a child may begin to feel frustrated, which can lead to low self-esteem and other problems. Experts can help a child learn skills by building on the child's strengths and finding ways to compensate for the child's weaknesses.
What part of the brain is affected by learning disabilities? ›According to Pennington, these domains account for nearly all the learning disorders. The perisylvian region includes Wernicke's area in the posterior left temporal lobe and Broca's area in the premotor portion of the frontal lobe.
What is the IQ of a severe learning disability? ›Individuals with Severe Learning Difficulties (SLD) have a significant intellectual disability with an IQ level between 20-35.
Can you have autism and SLD? ›Autism and learning disabilities can occur together, but they are distinct from one another. They can also be exclusive — that is, you can have one without the other.
What 1% of the world population has autism spectrum disorder? ›How many people have autism? According to the Centers for Disease Control and Prevention (CDC), about 1% of the world's population has autism spectrum disorder – over 75,000,000 people. That may be a large number, but autism spectrum disorder (ASD) features a wide range of symptoms and levels of severity.
What is the average IQ of someone with Aspergers? ›Nevertheless, one clinical study with slightly more precise information on IQ in ASD reported that 23% of the participants had an IQ < 85, while 45% had an average IQ, and 32% had an IQ above average (10).
What kind of disability is high-functioning autism? ›
High-functioning autism (HFA) is an autism classification where a person exhibits no intellectual disability, but may exhibit deficits in communication, emotion recognition and expression, and social interaction.
Does the IRS consider autism a disability? ›Is Autism Considered a Disability for Tax Purposes? The short answer is “yes,” the Earned Income Tax Credit (EITC) does cover children with autism as a disability, but the process is a bit more complex than merely claiming the EITC on your tax return.
Can I claim my autistic child as disabled on my taxes? ›You may still be able to deduct him as a dependent – provided that a few requirements are met. First, he must be permanently and totally disabled (if he is receiving Supplemental Security Income or Social Security Disability benefits he has been determined to be disabled).
What is the most autistic country? ›| # | Country | Autism Rate |
|---|---|---|
| 1 | United Kingdom | 700.07 per 100k |
| 2 | Sweden | 661.85 per 100k |
| 3 | Japan | 604.72 per 100k |
| 4 | United States of America | 603.38 per 100k |
...
Chapter 1: Autism Prevalence Statistics.
| Statistic | Data |
|---|---|
| State With The Highest Autism Rate | Florida |
| State With The Lowest Autism Rate | Texas |
Key Autism Statistics
According to the CDC, around 1 in 44 children has been identified with autism spectrum disorder (ASD) in the U.S. Autism prevalence has increased 178% since 2000. The country with the highest rate of diagnosed autism in the world is Qatar, and the country with the lowest rate is France.
Children with an autistic parent or sibling have 9 times the usual odds of autism and 4.1 times the odds of having autism with intellectual disability.
What state has the best schools for autism? ›Some states that possess the most resources for children with autism are Colorado, Massachusetts, New York, Pennsylvania, Maryland, Wisconsin, and Connecticut.
Why is autism so common now? ›Advances in diagnostic capabilities and greater understanding and awareness of autism spectrum disorder seem to be largely driving the increase, the Rutgers researchers said. But there's probably more to the story: Genetic factors, and perhaps some environmental ones, too, might also be contributing to the trend.
What is the genius syndrome of autism? ›Savant syndrome is a rare, but extraordinary, condition in which persons with serious mental disabilities, including autistic disorder, have some 'island of genius' which stands in marked, incongruous contrast to overall handicap.
Which celebrities have autism? ›
- Woody Allen.
- Dan Aykroyd.
- Marty Balin.
- Susan Boyle.
- Tim Burton.
- Tony DeBlois.
- Jerry Seinfeld.
- Bill Gates.
31% of children with ASD have an intellectual disability (intelligence quotient [IQ] <70), 25% are in the borderline range (IQ 71–85), and 44% have IQ scores in the average to above average range (i.e., IQ >85).