It was in the mid 1990s that neurodiversity as a formal concept and a rights movement started to take off. Thanks to the internet, people with autism and others with conditions were able to connect and begun sharing their experiences: what they had in common, and how their lives were different. A common thread that kept coming up was how many people felt marginalised, and pushed out by a society that only accepted typical ways of being.
Neurodiversity shows clear links with biodiversity. It supports the idea of embracing and valuing differences in people's brains. It suggests that the majority of people, often referred to as neurotypical, have brains that function in a generally similar way. By contrast, some people are neurodivergent, with brains that work in distinct and varied ways.
People with neurodivergent tendencies may be diagnosed with a variety of conditions, and many people have multiple diagnoses simultaneously. There isn't a definitive list, but autism (including what was previously referred to as Asperger's syndrome) and attention deficit hyperactivity disorder (ADHD) are quite common, as are learning difficulties, such as dyslexia that affects reading and writing, and dyspraxia, which involves co-ordination and movement difficulties.
The human side of artificial intelligence, ethics, consent and whether research will actually be beneficial to neurodiverse individuals.
Interwoven with the concept of neurodiversity is a change in approach that accepts a social model of disability. This model suggests that many of the disabilities people with neurodivergent conditions experience aren't due to "something wrong" in the brain, but are instead the result of difficulties that arise when someone who is neurodivergent navigates a world that is geared towards neurotypical people. The obstacles they encounter, therefore, should be reduced or eliminated by making our society more flexible and accommodating.
There's been a clear shift in attitude and tone, says Professor Francesca Happé of the Institute of Psychiatry, Psychology and Neuroscience at King's College London. "We no longer talk about curing or treating autism, but we're trying to make things better for individuals who have it, such as reducing anxiety and depression, improving sleep quality, managing epilepsy, and addressing intellectual disabilities and language difficulties.
But the man's point was that some parents might prefer their child takes a risk of contracting a potentially deadly bug rather than being autistic.
It was a moment of realisation about the stigma surrounding autism," says Botha. "One of the most significant things that neurodiversity has achieved for neurodivergent individuals is providing us with a way to understand ourselves as fundamentally deserving of worth, regardless of how others view our disabilities.
They are recognised as neurodevelopmental conditions: results of how the brain develops in the womb or early childhood, and lots of them overlap.
Rewind the clock 40 years and doctors suggested that four, perhaps six, out of every 10,000 people were autistic. Now, records indicate that 1-3% of the world’s population are autistic.
Diagnoses of ADHD have shown a similar surge. Those affected tend to have trouble concentrating; they may act on impulse and struggle to remain seated. In the UK, diagnosis rates among secondary school boys have increased by more than double in two decades. In adults under 30, there has been a 20-fold escalation in diagnoses. More people are being diagnosed for the first time in adulthood.
In the United States, the escalating rise in autism diagnoses has been described as an "epidemic", a term generally reserved for infectious diseases, and this implies that autism itself is increasing. However, many researchers do not agree with this, suggesting that the rise is actually the result of changes in how autism is defined.
Diagnosing autism involves observing "persistent deficits" in social communication and interaction, along with repetitive behaviour patterns, such as arranging toys in a particular order, insisting on sticking to a daily routine, and becoming excessively focused on specific interests.
People can be unduly sensitive to bright lights, specific sounds, odours, tastes, or textures. Alternatively, some individuals might be less sensitive than usual and have a craving for certain types of stimulation, whereas others may struggle to notice if they're hungry, unwell or in discomfort.
“Dr Cathy Manning, a psychologist at the University of Birmingham, suggests most of the increase is due to better methods of diagnosing, greater understanding and awareness,” “It's not that there are more autistic individuals than there were before, it's just that we're now identifying and recording these cases properly.”
Individuals are overlooked for a wide range of reasons. The widespread notion that autism is predominantly a male condition (statistics show that the diagnosis is approximately four times more common in males than females) is one factor. Educators often identify the boy who constantly walks the playground perimeter while his classmates engage in a game of football, but fail to acknowledge the girl who imitates a classmate in an effort to fit in. This "masking" is present in both males and females, and it has its own set of destructive effects.
“People with autism tell us it's wonderfully tiring and can wear away at your sense of identity,” says Happé, “because you might befriend others but won't feel like they are genuine friends, as they are friends with the persona you present to them rather than the real you.”
Similar forces are at work in Attention Deficit Hyperactivity Disorder (ADHD). In the late 90s, a diagnosis required the condition to start before the age of seven and evidence of “impairment” in a variety of settings. The age threshold has now been increased to 12 and children only need to show “symptoms” in some environments. Before 2013, ADHD and autism were officially mutually exclusive. If a person had one, they could not be diagnosed with the other.
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The study involved eight boys and three girls, all exhibiting what the doctor referred to as "autistic disturbances". One boy, Donald Triplett, was the first to receive a diagnosis of autism. Observed at the age of five, Triplett appeared "self-contained", learned a vast array of pictures from an encyclopaedia, and took great pleasure in spinning any available object. Some of his responses were intriguing. When asked to perform subtraction - taking four from ten - Triplett replied: "I'll draw a hexagon."
Kanner was unaware of the underlying causes. He observed that the children he assessed had "come into the world" with an "innate inability" to form the usual social connections. However, he noted that all of them seemed to have parents who were "highly intelligent", with very few being "really warm-hearted". For the most part, Kanner commented that the closest relatives were people who were strongly occupied with abstract concepts in science, literature or art, and showed a limited genuine interest in people. He even deemed three of their marriages to be "dismal failures".
A concept as dreadfully harsh as it is, where children are taken away from their own families.
individuals who didn’t fit Kanner’s tight criteria, yet exhibited repetitive behaviour and struggled with social interactions, communication and imagination.
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Today's comprehension of ADHD, which merges inattention and hyperactivity into a single diagnosis, wasn't established until the 1980s. Medical professionals look for a persistent pattern of behaviours present before the age of 12, which “interfere with functioning or development”, encompassing struggles with maintaining focus, acting impulsively, and being unable to remain seated when required.
between brain areas in the front responsible for attention and control, and deeper parts involved with learning, movement, rewards, and emotions.
Drinking and smoking in pregnancy, early birth and brain damage.
Some genetic variants are very rare but have a significant effect, while many more, which may be in the thousands, are fairly common and only have a small effect each. These are present in the general population and appear in varying combinations in different people, resulting in a diagnosis for some but not others.
By 2022, "we do not want a 'cure' for autism. We want to be able to continue being autistic."
Morgan James Morgan, a PhD student at the University of Surrey, studies the genetics of autism. He is autistic and has an autistic daughter. "I understand why people are concerned," he says. "Those concerns are legitimate, but I'm not sure that should prevent us from pursuing this vital area of research when it's clearly so significant in understanding what's going on."
Professor Morgan notes part of his research focuses on comprehending the reasons behind the vast differences among individuals with autism. "One autistic individual may be noticeably different from another," he says. "You might be able to provide assistance based on their presented characteristics, but it would also be beneficial to understand why one person is distinct from another, and it seems that much of this varies genetically."
It's not the only area of concern. Some people worry that the social model of disability marginalises neurodivergent individuals with distinct medical needs. "There are groups of parents who feel left behind because their children differ significantly from those who are leading the neurodiversity movement," says Professor Patricia Howlin, a founding editor of the journal Autism. Up to 30% of people with autism are non-verbal. Some experience epileptic seizures. Others require feeding tubes directly into their stomach.
“Howlin believes the view going back to the spectrum idea is the key. There are autistic people who may excel as scientists or artists on one end of the spectrum, but be in need of daily support on the other. Some autistic individuals may be highly sensitive to the idea of being helped or treated, whereas others, predominantly families or carers, are desperate for intervention and treatment.”
Appropriate support in education is crucial, Happé claims. If a teacher isn't aware that a child is autistic, the child might be misinterpreted as being rude when they are simply being "autistically direct". Giving clear information about changes in activities, using visual schedules, and timers to cushion transitions, as well as understanding children's sensitivities, are all helpful, Happé states. "Most of the strategies that work for autistic children are beneficial for all children," she adds.
Improving the environment is key for ADHD too, says Dr Max Davie, a consultant paediatrician in London who has an ADHD diagnosis and is a trustee of ADHD UK. He uses the analogy of a "hungry brain" that is chronically under-stimulated. People need to understand ADHD and know how to respond to it, he says. Building positive relationships is crucial: if a child is causing chaos at home, threatening to take away their Xbox could be counter-productive, putting the relationship on to a confrontational footing. Good brain health is important too, he adds. "Make sure you are getting good sleep, that your mood is under control, and get plenty of exercise. This makes your brain healthy and you'll be better able to cope with your ADHD."
Autism and ADHD are distinct conditions, but there is a shared underlying explanation in terms of biology, the people affected, the symptoms that appear, and the support and care that is effective. Making the environment as comfortable as possible is very important for both, but it is only one aspect of this. “It is also about the attitudes around you,” says Davie. “What helps is people who understand you and can adapt and structure their responses to meet your needs.”
Where to get help
If this is affecting you and you require assistance, please refer to:
adhduk.co.uk
additudemag.com
autism.org.uk
autistica.org.uk
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