How robots are helping children with autism

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autism, body movements, chest monitor, Children, classroom, communication, early diagnosis, emotion, facial expressions, family, feedback, interaction, modes, motions, non-threatening, non-verbal communication, reactions, research, robot, social interaction, social skills, teacher, therapist, treatment, withdrawal

How robots are helping children with autism

Anthony Arceri is seven and has autism. His clothes are covered in sensors, and he is standing in front of Zeno, a smiling, 2ft-tall robot. “What is your favourite food?” Zeno asks Anthony. “Chocolate milk and french fries.” “I love chocolate milk,” Zeno replies. The robot raises its arm, and Anthony copies. Zeno rubs his stomach, and so does Anthony.

It looks like fun – and for Anthony, it is. But researchers believe the interaction between Anthony and the robot also holds the key to early diagnosis and treatment of autism. Zeno is the result of a collaboration between Dr Dan Popa at the University of Texas at Arlington, Hanson RoboKind, Dallas Autism Treatment Centre, Texas Instruments and National Instruments – and is the brainchild of Hanson Robot owner and former Disney imagineer David Hanson.

Diagnosis of child autism has traditionally taken place through social interaction and speech exercises. This means that, until a child can speak, diagnosis is either a lengthy process, or can’t happen. But Zeno can interact with children through nonverbal communication such as body movements and facial expressions, speeding up diagnosis and perhaps even enabling it to be carried out before a child can talk.

Zeno isn’t just used for diagnosis. Children with autism can sometimes find social interaction threatening – making them withdraw, even from family members. Robots such as Zeno have features that look slightly human, but are obviously not human. This makes communication, with all its complex and frightening subtleties and nuances, less complicated and more comfortable for the child.

Anthony’s mother, Pamela Rainville, found out about Zeno from the Dallas Autism Treatment Centre, and thought the project might benefit Anthony. “It’s always good for him to be put in different situations, things outside his normal routine. Anytime he can be around other people, it’s a good learning and growing experience for him.”

So far, Anthony has had two therapy sessions with Zeno. Rainville believes he got more out of the second meeting than the first, and she expects he will get even more out of subsequent interactions with the robot. “This second time, Anthony fist-bumped Zeno, which was great. It shows he was a little more relaxed.”

Popa believes that Zeno is a good motivator for children as he is engaging and non-threatening: the children listen to the robot. “The idea is for the robot to instruct kids, give them some useful social skills and at the same time observe their reactions and calculate their reaction times. That calculation could form some kind of an autism scale.”

He says there are three ways in which therapists can use Zeno. “The first mode is called a scripted mode of interaction, where you pre-programme a certain sequence of motions. For the second mode, we have added a control system so we can have an operator or therapist control the robot by tele-operations. In this mode, it mirrors the motions of the instructor.”

In the third mode, the child can take control of the robot. “This can be unsafe as the child can do things – such as slap himself – that the robot will copy and possibly break. So we tend to use this third mode as entertainment only.”

Zeno now has a brother, Milo, as well as an international family. Zeno came first, and is used in research and classroom settings. Milo was created specifically to work directly with children. According to Richard Margolin, director of engineering at Hanson RoboKind and part of the team who developed both robots, some children with autism who had never spoken directly to an adult teacher spoke to Milo.

Milo looks very similar to Zeno. His expressive face is an important feature, because a characteristic of autism is the inability to read and connect with the emotions of others. Children are asked to identify the emotion shown by Milo from multiple choices on an iPad. Milo’s eyes are cameras, recording feedback. The child wears a chest monitor that records changes in heart rate and therefore emotion. A typical lesson would involve Milo and a child interacting one-to-one; the child responding to the robot with an iPad, and a therapist or teacher present to help if needed and record difficulties and progress.

One of Zeno and Milo’s international relatives is Kaspar, designed in the UK by the University of Hertfordshire’s Adaptive Systems Research Group. The size of a small child, unlike Zeno and Milo, Kaspar has a neutral expression so that children can interpret him how they wish. Research is under way to see how Kaspar’s use could support children with other developmental conditions, such as Down’s syndrome or attention deficit hyperactivity disorder, known as ADHD.

Another distant cousin is Nao, who was created in 2006 by Aldebaran Robotics and is being developed as a “house robot”. Along the way, Nao has been used as an educational tool, and the University of Birmingham’s Autism Centre for Education and Research worked with Aldebaran Robotics on a version of Nao to help children with autism. But like Kaspar, Nao has an expressionless face.

What seems to be unique about Zeno and Milo is the way that their expressiveness defies long-held robotic conventions. Designed to be the first advanced social robots in the world, they could eventually have an impact far beyond the diagnosis and treatment of autism. RoboKind envisages a broader role for its robots in educating young children. In the words of his creators, Zeno represents the future of robotics and could be “a wonderful addition to every household”.

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Social workers need training to help them better understand self-harm

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autism, awareness, education, family, online support, physical health, self-harm, social workers, support, training, understanding, young people

Social workers need training to help them better understand self-harm

It is estimated that one in 12 young people have self-harmed at some point in their lives, according to charity YouthNet. The charity says 3,000 people aged 16 to 25 visit its digital support service TheSite.org every month after looking up self-harm on a search engine. Yet, despite these statistics, self-harm awareness training for social workers is not always as comprehensive as it could be.

Nushra Mansuri, professional officer (England), at the British Association of Social Workers (BASW), says while some social workers – such as those working in mental health – may be sensitive to the issue of self-harm, there needs to be more awareness of the problem within the profession and that self-harm training is patchy.

“Whatever client group you work with, it will be a feature – it [self-harm training] should be integral because you are working with people whose lives are in crisis – there is a high correlation between the people you work with and people with a propensity to hurt themselves,” she says.

“Social workers need a greater awareness of the issue and need to understand why people self-harm. I wouldn’t lump everyone together, but it can be the impact of trauma, it can be a cry for help, it gives someone, who may have had control taken away from them, a sense of control.”

What mistakes could a social worker who lacks awareness of the issue of self-harm make? “An untrained person may have a tendency to look at the superficial and not go beyond that,” Mansuri says. “A social worker may be out of their comfort zone and not be able to deal with it – dealing with someone’s raw pain is really hard.”

Mansuri adds that social work “doesn’t have all the answers” when it comes to self-harm and that more education is required. “There is an underestimation of the importance of looking at self-harm,” she says.

Jennifer McLeod, managing director of self-harm training provider Step Up! International, says in some regions self-harm training for social workers is inadequate.

“Social workers ought to be trained in spotting the signs; if they aren’t spotted, it could be fatal,” she says. “It’s about listening to what’s not being said, looking for physical signs and emotions – they [people who self harm] are generally hiding something.”

McLeod adds that well-trained social workers will broach the topic with the young people and their families. “There might be denial from parents and social workers will have to find ways of eliciting information from young people.”

McLeod says delegates at Step Up! International training courses are often in a state of panic about the issue as they are uncertain about how to deal with the problem or even broach the subject.

“Some professionals don’t feel confident about bringing up the issue directly, they daren’t ask about it as they think it might make it worse”, she says.

McLeod suspects self-harm is on the increase – and is being talked about more – because of the current economic climate.

“In addition to the emotional and biological changes [young people experience], there is the recession, labour market issues, parents being made redundant – parents may not be managing and may be economically struggling,” she says.

Caroline Hattersley, head of information, advice and advocacy at theNational Autistic Society (NAS), says people with autism face a “raft of challenges” that might make self-harm more likely.

“Autism does bring specific difficulties – we’d like to see more training on understanding autism and its relation to self harm,” she says. “The key is understanding the individual and understanding the underlying causes.” Lacking this understanding could lead to a social worker misinterpreting why someone is self-harming, Hattersley adds.

“The individual might not have done it before, they may be hitting their head because they may have communication difficulties and they’re trying to communicate a physical problem – you might miss an ear infection,” she says.

Hattersley acknowledges that it can be difficult for professionals to admit they are struggling with the issue of self-harm. NAS has set up Network Autism, a forum where professionals can read research, and discuss with each other, the issue of self-harm and how it relates to people with autism.

YouthNet’s chief executive Emma Thomas says all practitioners working with people who self-harm would benefit from a better understanding of the problem. She adds: “If social workers are more aware of services like TheSite.org, many more young people can be directed to safe, anonymous online support to complement the vital offline support they need.”

‘Autism doesn’t hold me back. I’m moving up the career ladder’

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employment

‘Autism doesn’t hold me back. I’m moving up the career ladder’

Jonathan Young has big plans for his career. The business analyst at Goldman Sachs is on the autistic spectrum. But this, he says, is not something he allows to hold him back.

“I’m the company’s global go-to guy for all the information used in every single one of our internal and external presentations,” he says. “I’m moving up the ladder every year in terms of responsibility or promotion. My ambition is to maintain this momentum. In 10 years, I want to be someone fairly big.”

He is part of the most visible generation of young people with autism our society has ever known. Diagnosed early, this generation have been educated to expect not just a job when they leave school but a career on a par with their “neuro-typical” contemporaries.

The confidence and determination of these graduates – some of whom are educated to PhD level – are forcing the pace of change in organisations previously inaccessible to those with autism. Businesses, from City law firms and banks to global healthcare companies, have begun to open their doors to young people once thought able only to do lowly jobs.

Young first went to Goldman Sachs as an intern in the National Autistic Society’s specialist employment programme, Prospects. His time at the investment bank was such a success that the two-month internship swiftly became a full-time, permanent post.

“When I arrived, this role was a part-time job but I built it up into a key, full-time post and made it my own,” he said. “Autism doesn’t hold me back because I have had the correct support from a young age. It’s key to have that support, both in education and in the workplace, but I don’t require anything complicated: people just have to understand that I’m different.”

For all his confidence, Young admits that he considers himself fortunate. “I never lose sight of the fact that I’m lucky to have a job that allows me to use all my intelligence and stretch my potential,” he said.

Prospects has placed young people with autism in companies including Thomson Reuters, the law firms Clifford Chance and Ashurst, the technology and business consultant Cartesian, and John Lewis.

Penny Andrews got her job as a library graduate trainee at Leeds Metropolitan University in August without any help from a charity or specialist employment agency.

Having beaten 200 applicants to the job, she believes she has proved herself to be the best candidate. “Sometimes I feel people think I should be grateful that I have a job but I’m performing a useful task and doing it well, so they should be grateful to me,” she said. “After all, they wanted me badly enough to employ me a month before I had finished my degree in IT and communications with the Open University.”

Far from feeling that her diagnosis of Asperger’s is something to be “got over”, Andrews maintains it gave her a lead over the other candidates. “I was completely open about my autism throughout the interview process and even asked for a few special conditions to take account of my Asperger’s, such as working from 8.30am to 4.30pm,for example, so I don’t have to take the rush-hour bus home, taking extra breaks in a special quiet area if I need quiet, and not having to answer telephones.”

They are small adjustments for her employers to make, she said, compared with the advantages her Asperger’s gives them. “I’m more focused, intense and honest than a neuro-typical person,” she said. “I do things thoroughly and pay proper attention to detail. I’m always switched on: even when I’m not at work, I’ll go to events that are relevant. Libraries are one of my autistic specialities and I harness that at work.”

Employers’ attitudes might be changing but there is a lot of ground to make up. Just 15% of those with autism have full-time jobs, according to research by the National Autistic Society (Nas), while 9% work part-time. These figures compare unfavourably with the 31% of disabled people in full-time work in the UK. More than a quarter of graduates with autism are unemployed, the highest rate of any disability group. Nevertheless, employers are increasingly coming round to the arguments from disability advocates that employing those on the spectrum is not about charity or social responsibility – but the empirical benefit of taking on people with unique skills.

Tom Madders is head of campaigns at the society and responsible for its Undiscovered Workforce campaign to get young people with autism into employment. He talks of a “vast pool of untapped talent” among those with autism.

“When someone has the intellectual ability and ends up doing a job like working in a supermarket, it’s heartbreaking. It’s such a waste because although everyone with autism is different, the things they bring that are additional to the rest of us include a very high concentration level, very good attention to detail and analytical skills that are key in data analysis and when looking for anomalies in complex spreadsheets,” he said. “Why would employers want to miss out on those skills? In addition, those with autism have very specialist areas of exhaustive interest which, if these can coincide with the job in hand, can be extremely useful. They’re much more reliable in terms of timeliness and absenteeism and very loyal. Often, they’re very happy in jobs other people find boring.”

William Thanh has such severe autism that he can only communicate through his iPad. But his work at the Paul bakery in London is of such high quality that the manager, Salina Gani, is keen to increase his hours.

“When we decided to take on three young people with autism last year, we thought there would be limits to what they could achieve,” said Gani. “But these young men have shown us that we shouldn’t assume anything on the basis of their autism alone. Yes, they need work that’s repetitive and structured, but much of the service industry is like that anyway. We would gladly take them on full-time and increase the numbers of people with autism working for us across all our outlets.”

At Guy’s and St Thomas’ hospitals in London, an initiative was set up two years ago to help people aged 18 to 30 with autism gain work experience. Of the 20 or so interns who completed the scheme, four have jobs at the hospital. The third cohort of about 16 young people to begin this year will be twice as large as that in the first year.

Staynton Brown, associate director of equality and diversity at the hospital, dismisses any suggestion of the initiative being a philanthropic one. “This is not a charitable gesture,” he said. “We want to make sure we have the most talented workforce possible. It’s in our interests in multiple ways. For a start, this hospital serves a very diverse population and we want to do that to the best of our ability, which is more likely to happen if our workforce is used to working alongside a diverse group of colleagues.

“We’ve all benefited from the changes we’ve incorporated to accommodate those with autism. By clarifying the way we give information to and help introduce the interns into the hospital, we’ve made communication clearer for everyone, which leads to better patient care.”

William Elliott, a managing director at Goldman Sachs, agreed. “Employers are thinking more diversely about their workforce because they want to get the best talent through the door. We’re increasingly recognising those talents can be found within this historically underrepresented group.

It’s a lot easier than most people think to integrate someone with autism into the workplace. It just takes a good manager who is prepared to give some time to bring that person on, an approach which will be of benefit to every new employee.”

Project Search, a programme supported by the Office for Disability Issues, helps those with autism find – and keep – permanent employment in companies including GlaxoSmithKline and the security firm G4S. About 30% of Project Search graduates have been taken on by their host employers. An additional 30% are signed up by other employers.

“People are being recruited on Project Search before they have even finished the programme because, far from being seen as a charity scheme, these young people are rightly regarded as a talent pool, like student nurses,” said Anne O’Bryan, who runs the European arm of the programme.

Some of the improvements can be traced to government policies. The Autism Act 2009 – a response to poor employment rates for people with autism – was the first disability-specific legislation to be passed by the government.

In 2011, the Department for Work and Pensions and Nas published a guide for employers, Untapped Talent. But David Perkins, manager of Prospects at Nas, said the government had done as much harm as it had good. “Unfortunately, things really haven’t improved in terms of employing people with autism and Asperger’s syndrome over the last few years,” he said.

Prospects has helped place 30% of its clients in work – 18 people in 2012 and 15 in 2011. But these figures, said Perkins, are down on the three years before. He blames the government’s Work Programme.

“It has been detrimental in helping people with autism to find employment because it really doesn’t reflect the specific needs and difficulties people with the condition might have in terms of employment,” he said, pointing out that some Work Programme providers were getting just 3.5% of clients into jobs.

“Funding for courses such as our own – which is 10 times more successful – is extremely limited, and those with autism who want to work continue to struggle to get adequate support to allow them to do so,” he said. “As things stand, there is so little help out there for the around one in 100 adults with the condition, that finding sustainable employment for people with autism is an uphill battle.”

But Peta Troke of Autism Plus is more optimistic. “The job market is opening up to people with autism in a way it never has before,” she said. “There’s a ‘can-do’ attitude around people with autism now. There’s a spark.”

Unrealised potential

• Only 15% of adults with autism in the UK are in full-time paid employment and only 9% are in part-time employment.

• 26% of graduates with autism are unemployed, by far the highest rate of any disability group.

• Of those who do not currently have a job, 59% do not believe or think they will ever be able to get one.

• According to the National Autistic Society, most of the 300,000-plus working-age adults with autism want to work but are held back by a lack of understanding of autism and a dearth of specialist employment services.

• With help from the National Autistic Society’s employment support service Prospects, 70% of adults with autism were able to find a job.

• Only 10% of adults with autism receive support in finding work but 53% would like it.

• 79% of adults with autism who receive out of work benefits say they would rather work.

• 37% of adults with autism have never had a paid job after the age of 16 and 41% of people over the age of 55 have spent a period of more than 10 years without a paid job.

• 51% of adults with autism in the UK have lived through a period in which they have had neither a job nor access to benefits. Of those, 10% have been in this position for a decade or more.

• Of those who have worked, about a third said that they had experienced bullying and felt that they had received unfair treatment or discrimination as a result of their disability.

• Job applications and interview processes can be particularly challenging for people with autism, as the condition can affect the ability to communicate. Often “good communication skills” are described as a prerequisite in a job specification, even when the role does not directly require them – which can discourage people with autism from applying.

Culture: Diverse diagnostics

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autism, culture

Culture: Diverse diagnostics

In rural South Africa, young children may look at adults’ faces while having a conversation, but they don’t usually make direct eye contact because it is considered disrespectful. Yet a lack of eye contact is a hallmark of social deficits in people with autism, and as such it is something Western clinicians look for when diagnosing the disorder.

There are other examples of children’s behaviour — such as finger pointing to draw attention to something, or conversing with adults as if they are peers — that are commonplace in the West and included in tests of autism.

“Most autism research originates in the West, and we have a particular view of what autism is, a particular view about how children behave and interact with adults,” says Courtenay Norbury at Royal Holloway, University of London, who worked with children with autism from ethnically diverse backgrounds in east London¹. “Other cultures might have very different expectations of how children behave.”This viewpoint makes it challenging to use behavioural diagnostic tests for autism in places where the disorder may look — and even be — different from in the West. But with growing interest in autism’s true prevalence worldwide and the need for autism services in poor countries, researchers are grappling with the best ways to objectively diagnose the disorder.Parent support groups for autism exist in more than 100 countries. “We know that autism is diagnosable and observable across cultures,” says Mayada Elsabbagh, a researcher at McGill University in Montreal, Canada, who is leading a group within the International Society for Autism Research on cross-cultural issues. “But the exact details of how different cultures or settings modify autism is unknown,” she says.

For many years, the relevance of culture to autism was ignored. Some researchers believed that autism was intrinsically linked to modernity and Westernization, and was rare in other cultures. Others assumed that because autism is a neurobiological disorder, its expression should be the same everywhere².

But many researchers are beginning to take a subtler point of view. “While autism itself, the neuropathology of it, may not be culturally determined, our interpretation of those behaviours and our response to those behaviours is,” says David Mandell, associate director of the Center for Autism Research at the Children’s Hospital of Philadelphia in Pennsylvania.

Diagnostic differences

Before they can assess autism worldwide, researchers must measure how often various behaviours occur in different cultures and establish the norm, says Charles Zaroff, a psychology researcher at the University of Macau in China. They will also need to work with parents of children with autism to identify how it might manifest in a given culture.

In many Asian cultures, for example, children are expected to express respect for their elders through their language and behaviour, but these aspects of social interaction can be tricky for children with autism to master. Such difficulties would hardly be noticed in much of the West. “Lacking that deference would appear completely appropriate in the United States, but that lack of attention to the strata in society based on age would appear very abnormal in places like China,” Zaroff says.

Because the most widely used screening tests for autism were developed in the United States and the United Kingdom, researchers are finding that they have to adapt the tests to identify autism in other countries. For example, part of the Autism Diagnostic Observation Schedule (ADOS), one of the gold-standard diagnostic instruments for the disorder, involves observing a child having a pretend birthday party — singing ‘Happy Birthday’, cutting and distributing slices of cake, and so on. But in rural areas of South Africa, birthdays often aren’t celebrated, so even typically developing children might be unfamiliar with this ritual.

So, for a study of early autism diagnosis in KwaZulu-Natal province, researchers developed an alternative scenario of shared excitement, involving a traditional African song. “It’s finding the intention of what you’re trying to elicit, and then finding an alternative,” says Amy Wetherby, director of the Autism Institute in the College of Medicine at Florida State University in Tallahassee, who led the work.

Wetherby developed a list of 22 early signs of autism based on studies of several hundred children in Florida. Unpublished data from 19 children show that many of the same red flags differentiate children with autism from their typically developing peers in South Africa as well, says Wetherby.

“The amazing part to me is the unusual gestures,” says Wetherby. For example, rather than pointing or looking together at an object, children with autism in the United States may communicate by taking an adult’s hand and moving it to the object. “That’s an early sign of autism, and we see that [in South Africa] as well.”

One reason the patterns of autism symptoms appear to be similar across cultures may be that the participants in this study are only 18–36 months of age. “The earlier we go,” Wetherby says, “the more similarities we will see.”

More culturally specific or environmentalsymptoms of autism may emerge as children grow up. For example, according to one recent study, 5–12-year-olds with autism in the United States are more sensitive to sights and sounds than are children with autism in Israel — although the authors note that genetic, cultural and environmental factors might be an influence, as well as the parents’ reporting of their child’s behaviour³.

Subtle speech

If cultural differences emerge later in childhood, this could further complicate the diagnosis of autism. The disorder tends to be diagnosed later outside the United States and Western Europe, in part because of a lack of awareness of both developmental norms and autism. A parent who notices that a child is withdrawn or has a language delay may not recognize that as a symptom of autism.

In-depth interviews in Goa, India, show that the parents there aren’t attuned to early social and communication milestones, and they usually become alarmed only when a child starts preschool and has trouble connecting with peers⁴. “What really concerns the parents initially is, ‘he’s not fitting in with everybody else’,” says Gauri Divan, a paediatrician working with the child health organization Sangath in Goa.

In some cultures, parents may notice symptoms that are not typically associated with autism. Among Latino migrant workers in Florida, for example, “the first complaint seems to be that the child is a picky eater,” says Roy Richard Grinker, a George Washington University anthropologist in Washington DC, who is collaborating with Wetherby on a study of autism in this community. “But then, if you go into more detail, you start to see that these children the mothers are describing are probably going to fall on the autism spectrum.” Grinker speculates that these mothers are particularly aware of eating habits because they are poor and food is scarce.

Some evidence suggests that doctors need to be trained to spot the signs of autism from oblique comments made by parents. For example, Mandell says, white parents in the United States often emphasize a child’s lack of communication by saying, ‘my child doesn’t respond when I call his name’, while black parents tend to use phrases like ‘my child won’t mind me’. Doctors may be less apt to consider a diagnosis of autism when they think a parent is describing a disobedient child rather than a socially impaired one — possibly helping to explain why autism is diagnosed less frequently among black children.

Raising rates

If parents in different cultures developed the same sense of autism awareness as in the West, research suggests, autism prevalence around the world might look no different to — or may be even higher than — in the United States or the United Kingdom.

Perhaps the most dramatic demonstration of this is a study of more than 55,000 children in South Korea, which estimated autism prevalence at 2.64% (ref. 5). That’s more than twice the autism prevalence in the United States estimated by the US Centers of Disease Control and Prevention, and more than 50 times higher than the South Korean government’s figure for autism prevalence of 0.046% (ref. 6). One reason for that higher estimate may be that the researchers screened children in the general population for autism symptoms, rather than recruiting them only from clinics for autism and other developmental disorders.

In South Korea, researchers suggest that one reason for the underdiagnosis in autism may be that the stigma attached to the disorder is particularly strong in that country⁷. The diagnosis of a Korean child with autism diminishes the marriage prospects of siblings, and it can even affect his or her parents’ careers. Parents often prefer that their child be labelled as having ‘reactive attachment disorder’, or ‘lack of love’ as it’s known in Korean, a diagnosis that affects the mother’s reputation.

Still, about two-thirds of the children the South Korean study identified as having autism attended mainstream schools and were not receiving any autism-related services. This widespread mainstreaming raises the question of whether a Western-defined autism diagnosis is meaningful if children are able to function reasonably well in their cultural context. “That’s an interesting issue,” says Norbury, who questions “whether we should be worried about these kids, and whether we should be making families worried about them, if there wasn’t any kind of worry before.”

Other children identified in the study may be what Koreans would call a ‘border child,’ a new term that is emerging to describe some who would probably be diagnosed with autism in the West⁷. “This is a child who is high-functioning enough to be in a mainstream school, but who has significant social impairment,” Grinker says. Parents prefer this label, he says, because it implies that the child is only impaired socially, not intellectually, and that the condition is temporary.

In stigmatizing autism, South Korea is not unique. But Elsabbagh points out that attitudes towards a disorder often change as more resources and services become available. That, she says, is one powerful argument for more cross-cultural research on autism.

Another is that it will advance understanding of the biology of autism. “We’ve constrained our participant pools to those of European ancestry, and we have also not considered very thoroughly some of the cultural determinants that may shape autism in different ways,” says Elsabbagh. “Taking a more global perspective would allow us to see that underlying commonality much more easily.”

References

1. Norbury, C. F. & Sparks, A. Dev. Psychol. (published online 5 March 2012).
2. Daley, T. C. Trans. Psychiatry 39, 531–550 (2002)
3. Caron, K. G. et al. Am. J. Occup. Ther. 66, e77–e80 (2012)
4. Divan, G. et al. Autism Res. 5, 190–200 (2012).
5. Kim, Y. S. et al. Am. J. Psychiatry 168, 904–912 (2011).
6. Kang-Yi, C. D. et al. J. Autism Dev. Disord, (published online 22 June 2012)
7. Grinker, R. et al. Autism Res. 5, 201–210 (2012)

Not just a boy thing: how doctors are letting down girls with autism

Tags

aggression, anxiety, Depression, Eating Disorders, emotions, gender, mental health issues, misdiagnosis, OCD, relationships, social exclusion, stress, tics, vulnerability

Not just a boy thing: how doctors are letting down girls with autism

Annette Lewns has more experience than most of the different ways in which boys and girls with autism are treated. Her 14-year-old son, Ryan, was diagnosed when he was three and a half. But doctors refused to diagnose her 12-year-old daughter, Rachel, until she was nine.

“What angers me is that for years I was dismissed by doctors purely because Rachel was a girl. Ryan was spotted very quickly because the autism symptoms that doctors look for are so male-orientated,” said Lewns. “But Rachel’s autism was hidden unless you knew where to look for it.

“Rachel could express herself, she had a couple of friends and understood emotions if someone was at an extreme: really upset or really happy. But you didn’t really have to look too hard to see she didn’t genuinely understand emotions or relationships: she was just mimicking scripts and scenarios from TV.”

“The doctors failed time and time again to see through her coping strategies. I fought for years but I was confronted with a wall of disbelief and scepticism. They were simply unable to understand that a girl might present differently to a boy.”

While Ryan’s condition was acknowledged by their local authority, and he is now at a specialist school, Rachel continues to struggle at a mainstream school. “Ryan is being taught all sorts of tools and techniques to cope with his condition but Rachel is not,” said Lewns.

Estimates of the ratio of females to males diagnosed with Asperger’s syndrome or high-functioning autism varies from 1:4 to 1:10. No one understands this gender disparity: whether women really are less likely to be on the spectrum than men – or whether doctors are failing to spot the disorder in women.

Opinions are divided: Richard Mills, director of research at the National Autistic Society (NAS) says he “would not be surprised” if the true ratio was twice as high, with one woman on the spectrum for every two men. Dr Judith Gould, director of the NAS’s Lorna Wing Centre, thinks the ratio could be even narrower, with 1:1.5 female:male.

We may soon have an answer. Mills is leading the UK arm of a two-year international programme, Autism in Pink, which will look at the condition in women, focusing on the stress, social exclusion, vulnerability and misdiagnosis they suffer.

It follows concerns about reluctance to diagnose women. One recent survey by NAS found girls may wait longer than boys for a diagnosis and are more likely to be misdiagnosed: just one-fifth of girls with Asperger’s syndrome who responded to the survey were diagnosed by the age of 11, compared with half of boys.

The UK is leading the research side of the programme. Last week, Mills signed up the first two of the 12 women with Asperger’s he needs to work with researchers over a two-year period.

“I hope the programme will be the first step to ending the current trend for gender to be a barrier to diagnosis and post-diagnostic support,” he said. “Because research in the past has largely concentrated on males, the way we understand autism tends to be very much based on the experiences of men and boys with the condition. People are reluctant, for some reason, to make a diagnosis in girls and women.”

This reluctance is exacerbated by the fact that girls and women with Asperger’s or high-functioning autism can be more adaptive than boys: they are commonly better at hiding things or seeming more sociable, masking what doctors traditionally think of as the signs of autism.

But the strain of trying to appear “normal” can be immensely stressful. Gould said it results in “many of the girls we see having developed secondary problems such as anxiety, eating disorders or depression”.

This can also mean that misdiagnosis of girls and women is also a problem. The survey found 42% of females had been wrongly told they suffered psychiatric, personality or eating disorders, compared with 30% of males.

There is also the problem that the gender difference becomes a self-fulfilling prophecy: because more males are diagnosed than females, it is their symptoms and behaviours that experts have studied. The so-called screening tools, developed to help diagnosticians spot the syndrome, focus on culturally “male” interests, such as computers, trains and cars, rather than things more likely to appeal to a girl, such as animals, soap operas or fashion. Gould is rewriting the NAS’s diagnostic interview for social and communication disorders to include “gender-neutral” cues.

Even when an accurate assessment is given, however, it is no guarantee that the necessary support and help will materialise: the NAS survey found women continue to struggle after diagnosis, with half of females with Asperger’s or high-functioning autism – compared with 39% of males – saying it made no difference to the support they received.

Lucy Clapham, 25, spent years being turned away by doctors who insisted “girls don’t get autism” and told her to simply “act normal and read female magazines”. “I am certain that my diagnosis was delayed because of the fact that I am a girl,” she said. “My mum first noticed something when I was about six but our GP laughed at the suggestion. I’ve gone to counsellors, doctors and psychiatrists but all of them, including my teachers, refused to see I had classic autism even though I had casebook symptoms: almost no speech until I was five, no friends, hours spent staring at the washing machine, lining toys up and flicking my fingers in front of my eyes.”

When she was 12, Clapham became violent, aggressive and developed multiple tics, obsessions and compulsions. “I stopped talking outside of the house and sunk into an inner world,” she said.

After two more years and about eight counsellors, Clapham’s GP referred her to a child psychiatrist. “She was adamant that girls didn’t get autism, they just had ‘traits’,” said Clapham. “She claimed that I just needed to ‘act normal’ and that by buying nice clothes and reading women’s magazines I could learn to be ‘normal’. The only diagnosis I received from her was depression and anxiety.”

After leaving the children’s mental health service “none the wiser and possibly with more mental health problems than when I had arrived”, Clapham was sent to the adult mental health service and, after a long battle, to the Maudsley hospital in London, where she was finally diagnosed with autism, Tourette syndrome and obsessive-compulsive disorder.

“I was still refused services, however, partly because there were none available and partly because our local authority was not willing to fund an out-of-town, specialist autism service,” said Clapham. “I ended up getting sent to a college for the blind where I developed more mental health problems and became very aggressive because no one understood me or my autistic behaviour.

“When I was 20, I ended up in care because my mother couldn’t cope with my aggression and anxiety.”

Clapham stayed there for three years but still struggles. “Despite my diagnoses, some people still seem to believe that autism is a ‘boy thing’,” she said.

There is no clear understanding about how many girls and women are being missed – or wrongly diagnosed – and for how long. But that may soon change: the first neuroimaging analysis of women and men, with and without ASD, has been under way for the past two and a half years at King’s College’s Institute of Psychiatry (IoP) and the Autism Research Centre at the University of Cambridge. It’s hoped this research could provide the clues. The final stage of the project is about to begin, with results expected in months.

“It’s very exciting,” said Dr Michael Craig, a senior lecturer and honorary consultant at the IoP’s department of forensic and neurodevelopmental sciences. “We could well be looking at gender-specific treatments for Asperger’s being developed in quite a short period of time.”

What is autism?

First identified in the 1940s, autism is a developmental disability that lasts a lifetime and affects someone’s interaction with other people – how they communicate with and relate to them. It is a spectrum condition, affecting some more seriously than others. While some lead fairly independent lives, others suffer serious learning disabilities and need extensive support. Many who have an autism spectrum disorder can be badly affected because they have trouble processing sounds, sights and smells.

Around half a million people in the UK have autism, according to the National Autistic Society (NAS). What causes it is still unclear. “There is strong evidence to suggest that autism can be caused by a variety of physical factors, all of which affect brain development. It is not due to emotional deprivation or the way a person has been brought up,” the NAS says. Genetic factors are assumed to be responsible, and scientists are trying to pin down which genes are involved. Genetic testing to enable earlier diagnosis is therefore still a long way off.

Many people are not diagnosed until they reach adulthood. A recent NAS study of more than 8,000 people with autism, parents and carers found 52% were initially misdiagnosed. One in three adults with the condition say they have developed serious mental health problems because they have not received enough support to help them cope with the difficulties autism brings.