THE WORLD OUTSIDE
EXPERIENCING THE WORLD THROUGH THE EYES OF AUTISM
Carly has autism and for the first ten years of her life didn’t utter a word. Having communicated for the first time via her father’s laptop, experts Berit and Kristian reveals what the world looks like through Carly’s eyes.
At the age of 10, Carly Fleischmann typed a simple message on her father’s laptop, “Help. Teeth hurt.” Such a message wouldn’t normally be impressive if written by a 10 year old, but for Carly it was different – she has autism. Until that day, Carly was thought to be severely mentally
handicapped. Regularly throwing temper tantrums, she would thrash her arms and slam them on the table. So the sudden message startled her parents. Before those typed words, they had no idea that Carly could hear or understand anyone. But in that instant it became apparent that she may have silently understood everything said about her, and her handicap, in the preceding years. And it turned out that she had. While Carly’s sudden communication seems remarkable, she isn’t unique. In fact, a new theory of autism now predicts that all autists are much like Carly. Autism Spectrum Disorder is a developmental disorder characterized by regimented behaviour, a preoccupation with small details, and deficiencies or delays in social and communication skills. In typical cases, symptoms of autism gradually appear at the age of six months and continue to progress until the age of two or three, at which point the condition remains relatively stable. A lack of reliable statistics means that the exact number of children with autism is unknown, although the best data indicates that it may affect up to 1 in 88 individuals. And since the 1980s the number of children diagnosed with autism has steadily increased, but this simply may be the result of doctors being better able to spot the condition. It’s far from being a one-size-fits-all condition: the severity of autism varies greatly among individuals, although there are some tell-tale signs. The most common symptoms include communication difficulties: infants are often slow to start babbling, make unusual gestures and respond less than other children. At age two or three, autistic children usually show a lack of interest in communicating with others. Autists are often said to lack the intuition to tell what another person is feeling, or is implying from their words – which can sometimes lead to trouble: autists are often are unable to recognize when their actions might be taken as offensive.
The difficult path to debunk the myths
Many researchers have spent their entire careers struggling to find the root cause of autism. Genetics play a significant role, but other factors are also thought to be involved – and understanding how these factors interact
to cause autism is extraordinarily complex. Some researchers think that the development of autism is due to an abnormality in the way nerve cells send messages to each other – a dysfunction in the small gaps (synapses) between them. However, many researchers now believe that the role of genetic factors has been overestimated. Instead, we are now seeing a fresh wave of research into the effects of ‘environmental factors’ – medications, lifestyle factors, pollution, diet, etc. Perhaps the biggest misconception has been that childhood vaccinations are linked to autism. This belief is mainly the result of a now defunct and discredited study originally published in a
1998 issue of the medical journal The Lancet. Its author, Dr. Andrew Wakefield, was found guilty of inventing patient data to support his conclusion of a definitive link between autism and childhood vaccines. Even today, research continues to be published showing no link between vaccinations and autism (most recently, one such article appeared in The
Journal of Pediatrics). But there have been other misconceptions too. Popular in the 1950s, the ‘refrigerator mother theory’ claimed that autism was the result of ‘emotionally frigid’ parenting on the part of the mother. This type of parenting was thought to result in a child who suffered from guilt and self-doubt, leading to repetitive behaviour, self-isolation and speech difficulties. Offensive and stigmatising, the wholly false ‘refrigerator mother theory’ is thankfully now consigned to the history books. The present consensus among researchers is that genes are the most important factor in the cause of autism: up to 90 percent of the risk for developing autism is due to genetic factors. For a long time it was thought that the disorder may be the result of an ‘autism’ gene, but it is now believed that a combination of causes interact to produce autistic traits – that autism occurs when a developing baby with a genetic weakness for autism suffers some kind of ‘environmental insult’ before or after birth. Quite what this insult might be, no one knows – and neither do we know which genes lead to the genetic weakness.
An Intense New World
Based on laboratory experiments with rats, neuroscientists Henry and Kamila Markram have proposed an entirely new theory, known as the ‘Intense World Theory’, which may radically shake up the way we look at autism. This theory holds that the brains of autistic individuals are ‘hyper-connected’ and ‘hyperexcitable’. Rather than suffering from a deficit in perceptual abilities, the theory suggests that autists experience the world so vividly that it becomes painfully intense – so painful that they take refuge by turning inward and avoiding interaction with the outside world. The ‘ Intense World Theory’ emerged out of studies investigating the link between autism and the anti-epilepsy medicine valproic acid. Valproic acid has been used to treat bipolar disorder, migraine headaches and schizophrenia, but taking it during pregnancy can lead to autism and birth defects in the child. Similar
effects can be seen in other animals. Rats, for example, demonstrate decreased social interactions, increased repetitive behaviour, enhanced anxiety, hyperactivity, and altered pain sensation – the same symptoms that are found in autistic humans. Valproic acid given before birth also causes damage to particular areas of the brain (the brainstem and cerebellum)–and this pattern of damage is also similar in rats. Given these similarities, Markram and Markram believe that rats offer a particularly good way of testing various theories about autism, so they performed a series of experiments using rats to explore the ‘Intense World Theory’. Studying their brains, Markram and Markram found that certain networks of brain cells in the valproic-acid treated rats were much more sensitive – they had much more brain activity – than normal. The researchers also found the brain cells in autistic rats to have notably
more connections: their brains were ‘hyperconnected’. Consequently, the flow of information throughout the brain was enhanced, possibly explaining why the autistic rats were much better at discriminating between apertures of different sizes (similar to an autistic human’s ability to focus on fine detail). Finally, they discovered that the amygdala, a part of the brain responsible for fear processing, had a tendency to form new connections, which may explain the intense fear the autistic rats developed. It might seem counterintuitive that brain areas experiencing a loss of neurons can have excess activity. One possible explanation involves the types of nerve cells that are affected: many brain cells have an inhibitory, or ‘braking’, effect on the rest of the brain. The cerebellum (a region at the back of the head needed for co-ordination) has a high concentration of these ‘inhibitory’ nerve cells. So it wouldn’t be surprising that a loss of this type of brain cell – an easing up of the brakes – would make for an increase in brain activity overall. The remaining, unharmed, brain cells of the autistic brain would therefore form more connections with one another – perhaps increasing the ability to focus and pay attention to details. But this degree of intensity probably also leads to a ‘system overload’ and the anxiety that autists experience. “Autists see, hear, feel, think and remember too much, too deep and process information too completely,” said Henry Markram in a recent interview with Wrong
Planet, an online autism community.
“You don’t know what it feels like to be me”
Autistic individuals develop strategies to actively avoid the intense pain of perceptual
experience. If that doesn’t work, they resort to repetitive movements or radical behaviour. For example, children with autism often react to new sights, sounds and sensations with temper tantrums or extreme panic. Reports from autists who learn to commu
nicate appear to support this theory. Dr. Temple Grandin, a famous animal scientist and autist, has spoken about the intense perceptual experience that makes it difficult to connect with the world outside her mind. “Socialization is almost impossible if a person gets overwhelmed with noise that hurts their ears, whether this is at work or in a restaurant. For some, it may sound like being inside the speaker at a rock concert,” she remarks. Grandin developed the ability to communicate only after years of rigorous practice during which she learned to actively tune out the intense perceptual experiences in order to focus on communicating with others. Carly, who suddenly communicated with her dad at the age of 10, expresses similar discomfort, albeit of a more disturbing nature. “You don’t know what it feels like to be me, when you can’t sit still because your legs feel like they are on fire, or it feels like a hundred ants are crawling up your arms,” she writes. Carly says that people like her engage in repetitive behaviour and throw tantrums because it soothes the intense pain felt from sights and sounds. It’s a way of turning the mind inward, away from the painful outside.
Rain Man: the autistic genius
A further advantage of the ‘ Intense World Theory’ is that it can explain why at least 10% of people with autism also have ‘savant syndrome’ – intellectual talents that are far beyond normal. The syndrome entered the public consciousness after Barry Levinson’s 1988 movie Rain Man, in which narcissistic yuppie Charlie Babbitt (played by Tom Cruise) learns that he has an autistic, savant brother (played by Dustin Hoffman). Savant skills usually encompass a narrow range of abilities, most typically in music, art, calendar calculation, mathematics or spatial skills. For example, famous savant Daniel Tammet is able to multiply numbers of up to five digits faster than they can be typed into a calculator. Although most cases of savant syndrome develop at a young age, the condition may be acquired in other ways. For example, one subject,
Jason Padgett, developed savant-like artistic and mathematical skills after sustaining a head injury from a brutal assault. Another acquired savant, Derek Amato, gained the ability to play the piano after a dive into the shallow end of a swimming pool led to a severe concussion. ( You can read about these individuals in Issues
10 and 11 of Guru Magazine.) Individuals who become savants after brain injury also tend to acquire autistic traits. For example, Jason became obsessed with mathematical formulas, suffering from extreme anxiety whenever performing non-mathematical tasks, and Derek has a strong urge to play the piano for several hours at a time each day. If autism is the result of a brain lacking in connections or processing power, then it is difficult to explain why many individuals afflicted with the condition develop amazing abilities and why people who acquire savant syndrome later in life tend to acquire autistic traits. Emphasising ‘hyperconnectivity’ rather than deficiencies in brain processing, the ‘Intense World Theory’ goes a long way to explain the extreme intellectual abilities of such autistic savants.
What the future holds
How could the ‘Intense World Theory’ influence our treatment of and care for those with autism? For one thing, it would mean that autism isn’t
thought of as being caused by a deficit. Rather than lacking in ability, autists simply have too much to interpret. The problem with the autistic brain is that certain regions may develop too quickly, going on to dominate other regions – which can make rehabilitation very difficult. To counteract this problem, we might use medicines to suppress the brain activity arising from all of the extra connections. It seems nonsensical to treat a lack of communication in autism with a drug that limits the brain’s activity, but this counterintuitive approach works with other disorders: attention deficit hyperactivity disorder – a condition where children find it hard to concentrate and stay still – is treated with a stimulant, amphetamine. It is thought that amphetamine (the same drug as in ‘speed’, albeit at a very low dose) increases the activity of the control centers of the brain. The result: children with ADHD calm down and focus. But reducing excess brain activity may not be the best way to deal with autism. One interesting prediction of the ‘Intense World Theory’ is that, like savants, all autists have an ability to perform difficult intellectual tasks with incredible ease – even if they can’t communicate it. Savantism is also believed to be the result of a hyperconnected brain. So autists who are not diagnosed with savant syndrome likely still share many of the exceptional abilities of savants. Assuming that people with autism learn to utilise their brains’ hyperreactivity, they may develop exceptional talents later in life. According to Markram, if the autist’s exposure to her surroundings is controlled after birth, “It’s possible to be a genius.”
BELOW: Carly Fleischmann.