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Spectrum shift | The Economist

April 21, 2016

Dealing with autism

Beautiful minds, wasted

How not to squander the potential of autistic people

IN AMERICA in 1970 one child in 14,000 was reckoned to be autistic. The current estimate is one in 68—or one in 42 among boys. Similarly high numbers can be found in other rich countries: a study in South Korea found that one in 38 children was affected. Autism is a brain condition associated with poor social skills. It has a wide spectrum of symptoms, from obsessive behaviour to hypersensitivity to sound, light or other sensory stimulation, the severity of which ranges from mild to life-blighting. The range of consequences is also wide. At one end, the autism of a computer scientist may be barely noticeable; at the other, a quarter of autistic children do not speak.

Autism is a condition that defies simple generalisations. Except one: the potential of far too many autistic people is being squandered. Although around half of those with autism are of average intelligence or above, they do far worse than they should at school and at work. In France, almost 90% of autistic children attend primary school, but only 1% make it to high school. Figures from America, which works harder to include autistic pupils, suggest that less than half graduate from high school. In Britain, only 12% of higher-functioning autistic adults work full time. Globally, the United Nations reckons that 80% of those with autism are not in the workforce.

Pieces in the puzzle

Early screening is essential. There is no definitive test for autism. It can be diagnosed only by observing behaviour. Most babies learn by watching their parents smile, hug, eat and bicker; autistic children often fixate on inanimate objects or play with their toys in an oddly repetitive way. Relying on diagnosis by observation makes the statistics around autism slippery: one reason the condition’s incidence has risen in recent decades is that doctors have changed the way they detect it. Yet there is little doubt that early diagnosis and intervention can help autistic children’s brains develop better. If parents fill in a detailed questionnaire about what their children can and can’t do, doctors can usually spot the symptoms by the age of two. Speech therapy and other intensive treatments can help an autistic toddler cope and encourage learning and interaction at an age when the brain is at its most plastic. A study in 2013 in Washington state found that, though costly, such early coaching paid for itself within eight years by reducing the need for extra help in school. Alas, the average age of diagnosis in the rich world is three and a half.

A second aim should be to provide autistic children with schooling that suits them. A debate rages about when and how to include autistic children in mainstream classes. The evidence argues against blanket rules. Some do better when mixed in with other children and given additional support. Some need to be taught separately, either for their own sake or because they are disruptive. Others need a bit of both. Whatever the degree of integration, teaching autistic children effectively will require more funding, to train both specialist and mainstream teachers. In one study 60% of British teachers said they felt unprepared to teach autistic children.

From genes to synapses

Maximising the returns from this investment in education means ensuring that autistic adults find work. Not all such people can hold down a job. But the high-functioning among them tend to be deft analysts. They can spot patterns or errors in data that are invisible to most non-autistics, making them attractive employees for software firms.

Even less gifted autistic people often have an extraordinary capacity to focus and an eye for detail that make them effective workers. Their desire for routine and dislike of change make them loyal ones, too. They can excel at jobs that require precision and repetition, such as updating databases, stocking shelves, organising libraries or tinkering with broken cars. Firms that set out to recruit autistic workers, such as Walgreen’s, a big pharmacy chain, find them just as productive as their peers.

Plenty more companies could benefit from hiring autistic people. Agencies that specialise in recruiting them stress that even if they interview badly (not making eye contact, taking questions too literally), they may still be good workers. For autistic candidates, employers should consider replacing interviews with tests of relevant skills—filing tests for filing jobs, coding tests for coding jobs, and so on. Once an autistic person is hired, small adjustments help employers to get the best out of him: for example, by providing a calm workspace and clear instructions, expressed textually or visually rather than verbally. (Teaching managers to give clear instructions is a good idea for other reasons, too.)

The final element of an ambitious autism agenda should be greater investment in research. Medical understanding of the condition has improved since 1949, when the psychiatrist who first identified autism blamed cold, unloving mothers for making their children withdraw into themselves. Scientists today are sure that genes play a role, as do environmental factors. Still, many questions remain unanswered, both about the condition’s origin and its progression. The amount of public money spent studying autism is shockingly modest. Britain’s government spends a trivial £4m ($5.6m) a year. America shells out around $200m a year—about what it costs to look after 100 severely autistic people for a lifetime. Such sums are dwarfed by the opportunity cost of having so many potentially productive people dependent on others. Beautiful or otherwise, an autistic mind is a terrible thing to waste.

Source: Beautiful minds, wasted | The Economist

 

The rise of autism

Spectrum shift

Children in the rich world are far more likely to be diagnosed with autism than in the past. Why is this and what can be done to help them lead fulfilling lives?

ALONE and in silence, Sören Schindler sits in a white-walled conference room in Munich for six hours a day. He is writing a program that will run an online service for HypoVereinsbank, one of Germany’s largest financial institutions. His workspace suits him better than his previous one: an open-plan office where he felt constantly assaulted by the din of phones, clacking keyboards and chatty colleagues. “Working in such a loud environment exhausted me,” he says. Mr Schindler has Asperger syndrome, a form of autism.

Mr Schindler’s condition appears to have become more common over the past half-century. Autism was first identified in 1949 but not studied systematically for decades. An early study in 1970 found that one in 14,000 children in America was autistic. In 2000 America’s Centres for Disease Control and Prevention began collecting data regularly. Since then the share of eight-year-olds diagnosed with some form of autism has more than doubled to one in 68 or 15 in every 1,000 (see chart). A recent study in South Korea is the world’s first to be based on an entire population of school-age children rather than a sample. Alarmingly, it finds that one child in 38 between the ages of seven and 12 has some degree of autism.

Autism is a complex brain condition, encompassing a broad range of symptoms. These can include discomfort around other people, hypersensitivity to sounds, touch, tastes, smells and light, and obsessive interests. At least a quarter of children with autism do not speak, though some studies put the figure higher. At the other end of the scale are people of average or high intelligence who can live relatively normal lives. Dan Aykroyd, a Canadian comedian, is a notable example.

Autism affects different people in different ways. Some autistics score above average on intelligence tests but struggle to communicate verbally and make compulsively repetitive movements, such as rocking back and forth or flapping their arms. Others have a healthy vocabulary but a low IQ and poor motor control, which can make writing by hand or using a fork difficult. The autism of a particularly high-functioning person might be almost imperceptible, manifesting itself only subtly in an obsessive interest with maps, say, or the merits of different aeroplanes.

The causes of autism are not well understood. Research on identical twins suggests that genes play a big, probably dominant, role. But some environmental factors appear to matter, too, such as complications at birth or prenatal exposure to viruses or air pollution.

Researchers believe that autism begins developing early in life, perhaps in the womb. Although parents sometimes notice their babies behaving oddly before the age of one, symptoms do not always appear until later. Males appear to be more susceptible. In America, for example, autism is diagnosed almost five times as often in boys as in girls. There is no cure, although sometimes autistic children become adults for whom the label seems inappropriate because they grow out of it or improve with treatment.

One reason for the apparent rise in autism across the rich world is growing awareness, says Simon Baron-Cohen of Cambridge University. Some cases that used to be diagnosed as an “intellectual disability” or (in the bad old days) as “mental retardation” are now being recognised as autism, says Jennifer Stapel-Wax of Emory University’s Marcus Autism Centre. The proportion of people affected by autism appears much lower in poor countries. That is not necessarily because it is less common, but because of shortcomings in diagnosis and data collection, says Andy Shih of Autism Speaks, a charity.

Making a different diagnosis

Another reason is that doctors have changed the way they diagnose autism. The “spectrum” of autistic conditions has expanded to include Asperger syndrome, a milder social disorder, and some other similar conditions. As with autism, those with Asperger’s often struggle to connect with others, but are usually of average or above average intelligence and tend not to have difficulty talking.

There is no objective test for autism; a diagnosis is made by observing behaviour. Does a baby fail to make eye contact or respond when called by name? Does he play with toys in an oddly repetitive way—running the same car back and forth on the carpet thousands of times or lining up plastic dinosaurs in perfect rows? Has he begun speaking at the appropriate age?

By asking such questions, doctors can spot autism with some reliability by the age of two. Even so, the average age of diagnosis in many rich countries is three-and-a-half. Screening is seldom universal. Long waits between a parent first expressing worry and final diagnosis are common. Fewer than a fifth of the children in America who are eventually diagnosed with autism are diagnosed before they turn two.

The consequence, says Dr Stapel-Wax, is that autism has too much time to advance. The human brain is at its most malleable in the first two years of life. Infants typically learn voraciously during this time. They watch and listen as people around them talk, laugh and eat. They play with others. By contrast autistic babies tend to fixate on inanimate objects, limiting how much they can learn from their environments. Autism is a “social disability that develops so quickly it can become an intellectual disability”, says Dr Stapel-Wax.

Autism can be treated, particularly if it is caught early. Intensive coaching from a young age can help alleviate the symptoms. Using applied behaviour analysis (ABA), therapists work with children one-on-one, sometimes for 40 hours a week. They evaluate a child’s life skills and reward signs of progress. A child who stops spinning or rocking may earn praise. One who learns how to greet people may be rewarded with a smile.

A study in Washington state in 2015 was encouraging. It found that children treated for two years, starting between the ages of 18 and 30 months, using the “early-start Denver model”, which combines building relationships through play and ABA, had less intense symptoms by the age of six. What works for one person, alas, may not for another. Nonetheless, early intervention is clearly cost-effective. A Swedish study found that the cost of lifelong care for someone with autism could be cut by two-thirds with early diagnosis and treatment.

School of hard knocks

Even if they are spotted and treated early, autistic children often have a wretched time at school. Mr Schindler says that as a schoolboy he avoided his fellow students and never engaged in classroom discussion unless explicitly required to do so. A survey by the Interactive Autism Network, an American research group, found that autistic children are three times as likely to be bullied as their non-autistic siblings. Many drop out. In France, for example, 87% attend primary school, but only 11% progress on to lower secondary school and just 1% to upper secondary school.

In several countries, including America and Britain, autistic pupils are mostly educated in mainstream schools but offered extra help from therapists and teachers trained to deal with them. Education authorities like this approach because it is cheaper than setting up specialist schools. Parents often prefer their children to be taught alongside non-autistic children. But integrating the two groups can be hard. In a survey of the NASUWT, a British teachers’ union, 60% of members said they were not adequately prepared to teach children with autism. This creates frustration and sorrow. Three-quarters of parents of autistic kids in Britain complained that it was not easy to get the support their child needed. A similar number said their child’s social skills, self-esteem and mental health had suffered as a result.

Teaching autistic children well can be expensive. Netley primary school in London has an autism programme for children aged 3-11 who can weave in and out of mainstream classes. It receives a grant of £22,500 ($31,800) per pupil per year from the government, far more than is allotted to most other schools in England. There are 16 staff for 24 pupils, compared with a national average of one for every 17.

Teachers often work with the children individually. In the room for kids between eight and 11 years old, a pupil and teacher do sums on a whiteboard. Next door, younger ones sing a song about the alphabet. “For two individualised 15-minute sessions a day students direct activities and a teacher will join in,” says Gianna Colizza, who runs the programme. “If a child wants to flip a toy car over on its back and spin its wheels, instead of saying ‘That’s not how you play with a car’, we’ll play along. It can be exhausting for them to operate in our world all day, so twice a day we go into theirs.” In the “sensory room”, an oasis of beanbags and lava lamps where anxious students can recharge, a boy gets a foot massage from a teacher while calming music wafts from surround-sound speakers.

School can be tough for autistic people, but many have a worse time once they leave it. A study by the A.J. Drexel Autism Institute in Philadelphia found that only 19% of American autistic people in their early 20s lived independently, away from their parents. Wherever they live many are isolated: one in four said that they had not seen friends or received invitations to social events in the past year. Some autistic people prefer their own company, but many are unhappy. Adults with Asperger’s are ten times more likely to mull suicide than the general population, a British study found.

Hard at work

To live independently, autistic people need jobs but the prospects for finding work are bleak. Academic studies on global employment rates for adults with autism do not exist, but the UN estimates that 80% do not work. A survey by Britain’s National Autistic Society, a charity, suggests that only 12% of higher-functioning autistic adults work full time. For those with more challenging forms of autism, only 2% have jobs.

Job training, life-skills coaching and psychotherapy could help. An American study found that 87% of autistic youngsters who were given assistance to find a job, got one. Only 6% who did not receive support were successful. But in most countries, services disappear the moment autistic people finish full-time education. Robert Schmus, a 27-year-old American social worker with Asperger’s, describes leaving school as “going off the cliff”. He no longer received the social coaching that he used to have along with maths and English classes.

Help that should be available often is not. America’s Individuals with Disabilities Education Act is supposed to guarantee services such as vocational training. Gary Mayerson, a lawyer specialising in issues relating to autism, is suing the New York city Department of Education for $500m on behalf of thousands of special-needs students who claim they did not receive assistance they were entitled to.

Judging what proportion of autistic people is actually capable of working is tricky. About half are of average or above average intelligence, but that does not necessarily mean they will all be employable. An autistic person might score well on an IQ test but suffer from such debilitating anxiety that he cannot stray far from home. Most autistic people want to work. In a survey by the National Autistic Society, 79% of autistic adults on out-of-work benefits said they would like to find a job. Higher-functioning autistic adults have an easier time getting and keeping a job than those more severely affected, but both groups find job-seeking tricky.

The first big hurdle is the interview. Many autistic people struggle with social conventions, such as making eye contact when speaking. Laura Williams, a British cat-rescue worker with Asperger’s, recalls that in past interviews she found it hard to know when to shake hands and what to say when greeting the interviewer. When meeting new people she sometimes creates scripts to ease her nerves, working out in advance when to say things like “hello” and “thank you”.

Autistic people often speak bluntly. Asked what he thought of team meetings, Mr Schindler replied: “They don’t work. Before digging into the problem at hand people waste time talking about their weekends. Great, but I don’t care.” Many non-autistic people would wholeheartedly agree, but few would say so openly in a job interview.

Speaking their minds

Non-autistic people routinely exaggerate their abilities during interviews. Many autistic people find this hard. Kurt Schöffer of Auticon, a German IT consultancy that hires people on the autism spectrum (including Mr Schindler), recently spoke with a candidate whom he knew to be a brilliant Java coder. When asked if he was an expert programmer, the candidate said no. Only when pressed did he explain that he did not consider himself an expert because he had not fully mastered all the other computer languages.

An autistic person who makes it through the interview faces other difficulties once in work. Autistic people are frequently hypersensitive to the everyday annoyances of office life: ringing phones and bright fluorescent lights may distress or drain them. They might get tripped up by less-than-specific instructions. Socialising can be thorny, too.

Some find their own ways of coping. Ms Williams recalls the problems of dealing with customers at a grocery where she used to work. “I was very neat and precise—I was good at stocking shelves and things. But I had a hard time when it came to talking to people, so I would just watch my colleague and try to copy her.” After her diagnosis, she also read books about Asperger’s and began asking for more social advice. “I learned that if you smile and say hello, that’s an outward sign that you want to be friends.” Before, she would avert her gaze, stay silent and agonise over why people did not like her.

Despite these drawbacks, employers who hire autistic staff are usually glad they did. Many have strengths that make them well suited to some jobs. They are unusually good at focusing, for example. When asked what he most enjoys about his job, Mr Schindler says: “Solving software-engineering problems.” His favourite hobby? “Solving software-engineering problems.”

Autistic people often enjoy repetitive tasks that others might find boring, such as updating databases, organising filing systems and fixing computers. Employers also report that autistic workers are reliable and loyal. Their desire for routine means, once they find a job that suits them well, they rarely miss work or quit.

Autistic people’s brutal honesty can be socially awkward, but it can also work to an employer’s advantage. One of Auticon’s consultants noticed that a process he was working on could be automated and immediately told the client. (Instead of staying mum, as an ordinary person might to preserve his job.) The project finished ahead of time and under budget.

Finding employment is starting to get easier for some people with the condition. A growing number of charities and businesses find work for autistic people of high intelligence. Specialisterne, a Danish firm operating in several European countries, offers training and help with job searches. Kaien in Japan, AQA in Israel and Passwerk in Belgium all offer autistic consultants to clients in need of software testing. Their employees are provided with job coaches, who help negotiate pay and brief potential clients on what to expect. Siemens, which hired two people from Auticon to develop and implement software-testing systems, said that they processed on average 50% more tests than other consultants.

The benefits to firms of hiring autistic people with rare technical skills are obvious. For autistic adults without such abilities it is harder to find work, but given a chance they usually do well. Steve Pemberton of Walgreen’s, an American pharmacy group which makes a point of hiring people with disabilities, says autistic employees at the group’s distribution centres perform at least as well as other workers.

At Rising Tide Carwash in Parkland, Florida, autistic employees have helped build a bustling business. To work there, candidates—many of whom have never had a job before—must pass tests of their practical skills such as wiping windows and vacuuming interiors. Thomas D’Eri, who founded the business with his father after noticing the dearth of opportunities for his autistic brother, says his workers provide top-notch customer service, work hard and smile even in the oppressive Florida heat. They are grateful for their jobs. Mr D’Eri reckons they stay with him three times longer than non-autistic workers, saving him time and money on recruitment and training.

There are other unexpected benefits for the businesses that take on autistic employees, says James Emmett, a consultant who advises firms about hiring disabled workers. Because autistic people often think very literally, managers have to give much clearer instructions; and that helps non-autistic staff, too.

Learning fast

Fruits of Employment, a programme run by TIAA Global Asset Management, an investment group, recruits autistic employees to tend six farms in California and Washington state. It uses detailed checklists to train workers to tend apple trees and harvest grapes. Heather Davis, the CIO of TIAA, who was inspired by the talents of her autistic son to start the programme, found such prompts helped her non-autistic employees learn quicker, too.

Firms that hire autistic staff may also reap a reputational benefit. Other people may conclude that they are caring and generous, and be more inclined to work for them or buy their products. Mr D’Eri thinks his firm’s social mission brings publicity and thus business: “You don’t usually talk about car washes at the dinner table unless they return you a dirty car. With Rising Tide, people do.”

Autistic workers are proving themselves in many fields. Israel’s army uses autistic volunteers to interpret complicated satellite images. L’Oréal, a cosmetics firm, hires autistic adults to pack products and update databases. Harry Specters, a chocolate shop in Cambridge, England, employs autistic adults to cook truffles. The number of schemes to help autistic people find work is growing. Autism Speaks, a charity, recently introduced a jobs database, Spectrum Careers, that allows autistic jobseekers to browse thousands of opportunities across America.

A recent study in JAMAPaediatrics, a science journal, calculated that the lifetime cost of supporting an American with autism was $1.4m-2.4m. Paul Leigh of the University of California at Davis and Juan Du of Old Dominion University have added up not only the cost of care but also the opportunity costs of autism in America. They include an estimate of the output lost when autistic people are jobless or underemployed, and when their relatives cut back on working hours to look after them. They put the total at $162 billion-367 billion in 2015, the equivalent of 0.9-2% of GDP, on a par with both diabetes and strokes. By 2025 the figure could exceed $1 trillion, they predict. Confronting autism is costly, but failing to do so may cost even more.

Source: Spectrum shift | The Economist

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