The Psychologist - Autism special

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psychologist vol 27 no 10

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Special selection – just the autism material

Autism: Myth and reality Uta Frith introduces the issue

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digest 738 eye on fiction 768 careers 786 looking back 796

big picture centre interview: with Francesca Happé 762 looking in: my son’s not Rainman 766 one on one: with Simon Baron-Cohen 800

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Autism – are we any closer to explaining the enigma?

Uta Frith introduces the special issue

tinyurl.com/thepsychomag @psychmag

Autism – myth and reality 746 Christian Jarrett talks to researchers, people with autism and their relatives

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Combining the old and the new Jon Brock looks at Bayesian and predictive coding accounts of autistic cognition

special issue

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society 774 autism and the criminal justice system: Jon Sutton reports on an event supported by the Society’s Public Engagement Grant scheme

Cover ‘My bad day’: self-portrait by a 13-year-old with autism, Angus Lacey, Create Art for Autism 2014 Winner 2D category.

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New voices: What is autism anyway?

Eilidh Cage with the latest in our series for budding writers

...reports

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Risk and resilience in the developing brain 754 Mayada Elsabbagh looks at lessons from autism

September 2014 issue 48,674 dispatched Printed by Warners Midlands plc on 100 per cent recycled paper. Please re-use or recycle.

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The Psychologist is the monthly publication of The British Psychological Society. It provides a forum for communication, discussion and controversy among all members of the Society, and aims to fulfil the main object of the Royal Charter, ‘to promote the advancement and diffusion of a knowledge of psychology pure and applied’.

Managing Editor Jon Sutton Assistant Editor Peter Dillon-Hooper Production Mike Thompson

Journalist Ella Rhodes Editorial Assistant Debbie Gordon Research Digest Christian Jarrett (editor), Alex Fradera

Associate Editors Articles Michael Burnett, Paul Curran, Harriet Gross, Marc Jones, Rebecca Knibb, Charlie Lewis, Wendy Morgan, Paul Redford, Mark Wetherell, Jill Wilkinson Conferences Alana James History of Psychology Nathalie Chernoff Interviews Gail Kinman, Mark Sergeant Reviews Emma Norris Viewpoints Catherine Loveday International panel Vaughan Bell, Uta Frith, Alex Haslam, Elizabeth Loftus

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psychologist vol 27 no 10

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the issue This is a special e-edition of the October issue, including only the autism-related material.

For the full issue, see http://tinyurl.com/psy1014 ...digests autistic traits and altruism; from our free Research Digest (see www.researchdigest.org.uk/blog)

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...meets interview our editor Jon Sutton talks to Francesca Happé about autism, DSM-5, women in science and more

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careers we meet Stella Acquarone to talk about her work and her own problems with social interaction

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looking in 766 ‘my son’s not Rainman’: John Williams on being a parent of ‘The Boy’ with autism one on one 800 with Simon Baron-Cohen, Director of the Autism Research Centre in Cambridge

...reviews Eye on fiction: Generic images of autism 768 Douwe Draaisma on stereotypes in novels, films and real life

Over the years, I suspect I have heard far more about autism than about any other developmental disorder, even those that affect greater numbers. Hundreds of press releases that end with ‘such research may lead to early diagnosis of conditions such as autism’; countless conference presentations; dozens of broadsheet articles from parents of a child with the condition.

But do I have a true picture of the person, the realities behind the myths?

Although some people with autism fight against labelling it a ‘puzzle’ (see www.unpuzzled.net), for many psychologists that is surely what it remains. Across this special issue (taking in all our regular formats as well as a set of articles), we consider how scientific approaches to autism have changed, and we get to meet people with autism and their relatives. As Uta Frith (p.744) says, ‘Only by putting together many different viewpoints will we eventually know what autism is really like’.

As ever, please share your views via psychologist@bps.org.uk.

Dr Jon Sutton Managing Editor @psychmag

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...looks back A continuing journey 796 Patricia Howlin considers where more than 70 years of research and intervention has left us in understanding autism

The Psychologist and Digest Editorial Advisory Committee Catherine Loveday (Chair), Phil Banyard, Olivia Craig, Helen Galliard, Rowena Hill, Victoria Mason, Stephen McGlynn, Tony Wainwright, Peter Wright

15 years ago See www.thepsychologist. org.uk for archive, including Francesca Happé on understanding assets and deficits in autism

read discuss contribute at www.thepsychologist.org.uk

Big picture centre-page pull-out an image by William Tipple, a 15-year-old with autism.

Comment from Uta Frith

ARTICLE

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similarly struck by these individuals, and the result was a book on autism and Asperger syndrome. I never anticipated how dramatic the impact of the concept of Asperger syndrome would be in the brief history of autism. Many psychologists and psychiatrists had only just become aware of autism, and now they had to embrace a whole autism spectrum (Wing, 1996).

I believe the impact is still felt even if the label Asperger syndrome no longer appears in the 5th edition of the Diagnostic and Statistical Manual of the American t this time about 25 years ago I was Psychiatric Association. nervously awaiting readers’ reactions One of the positive effects of the to my book. Having been persuaded interest in Asperger syndrome is that we to go with the title Autism – Explaining the now know that autism can occur at all Enigma, I knew for certain that I hadn’t levels of intellectual ability, including very explained it. I had laboured on it for years superior levels. On the negative side, this and years, and most of the time I felt makes us sometimes forget that about half ‘Who am I to even try and write such a the cases diagnosed with an autism book?’ The main antidote for this feeling spectrum disorder suffer also from a came from fellow psychologist John marked degree of intellectual disability.

Morton, who egged me on from draft to It is this substantial group that presents draft with words like ‘you have something the most challenging behaviour and the to say, so say it’. most difficult problems of management.

In those days, books on autism were However, problems in managing life a rarity, and people were just beginning to cannot be blamed on intellectual disability. ask what autism was. The film Rain Man, Instead they are the consequence of the starring Dustin Hoffman and Tom Cruise, profound social communication problems was a milestone in the rise of public that are at the core of autism. In a truly awareness of autism. I remember how epic study that reported a 40-year followdifficult it was for bookshops to decide up of 45 autistic individuals with an IQ which of their sections was suitable for the >70, Howlin and colleagues (2013) found book. Mostly, it was placed with psychiatry that 83 per cent were unable to live texts, and ironically Frith was placed next independently. Here is a plea for to Freud. I would have much preferred to psychologists to take up their cause. be placed with books on experimental Now I stick my neck out to mention psychology, because I believe that another unforeseen psychology provides the side-effect of stretching space where the enigma the diagnostic might eventually be “people with autism really boundaries. With more solved. I could not have a very different mind lenient criteria and imagine then that there and different brain” heightened awareness would be a time when of autism, the diagnostic books on autism fill their process will inevitably own section, and when produce false positives. Thus, there are there would be this special issue of individuals with problems in social The Psychologist. relationships and other features that are Almost as soon as I had finished reminiscent of autism, who have either the Enigma book, I became hopelessly claimed or been given the label Asperger attracted to Asperger syndrome. With syndrome, but actually belong to a time I met an increasing number of different category. Sadly, this category is unusual adults with a provisional diagnosis as yet undefined and may even be part of autism, who amazed me because they of neurotypical individual variation. were far more able to converse than the Meanwhile these people have changed now grown-up children whom I had first the perception of what the syndrome is seen when I started doing research on like. This perception is currently geared autism in the 1960s. What struck me to emphasise the continuity between was their ability to provide insightful neurotypical and autistic development. observations about their experiences. That While I like the idea of neurodiversity, opened up completely new possibilities to I am not so sure that this necessarily investigate the autistic mind. Adults like means that there are only quantitative this had been mentioned by Hans Asperger differences between people. The argument in his landmark paper from 1944. I set is also geared to deny that the nature of about translating this paper and got in autism can be explained by cognitive touch with other researchers who were

Autism – are we any closer to explaining the enigma?

Uta Frith introduces a special issue

questions

Autism is a developmental disorder characterised by impairments in social interaction and both verbal and non-verbal communication, along with restricted, repetitive or stereotyped behaviour. Following more than a quarter of a century of extensive research from psychologists, are we any closer to explaining the enigma? Has stretching the diagnostic boundaries helped or hindered scientific and practical progress?

A critical step in ‘solving the puzzle’ of autism is to consider the myths and realities surrounding autism, both for those living with it and their relatives. This issue gathers a variety of perspectives from those people and from leading researchers in the field.

Is it better to look at autistic and neurotypical people as being on one and the same continuum, or as falling into two distinct categories?

resources

Frith, U. (2003). Autism: Explaining the Enigma (2nd ed). Oxford: Wiley.

Frith, U. (2012). Why we need cognitive explanations of autism. Quarterly Journal of Experimental Psychology, 65(11), 2073-92. https://sites.google.com/site/utafrith/ recent-publications

references

Notwithstanding DSM-5, is the label Asperger Syndrome still useful?

Howlin, P., Savage, S., Moss, P. et al.

(2013). Cognitive and language skills in adults with autism: A 40-year follow-up. Journal of Child Psychology and Psychiatry, 55(1), 49–58.

Wing, L. (1996) The autism spectrum: A guide for parents and professionals.

London: Constable.

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and failure is common. It is very desirable to be able to explain such difficulties without blame for the individual. They are indeed often outside the individual’s control. This is true for many medical conditions. Now if autism is a medical

cases of Asperger syndromes. Perhaps these individuals should be classified as having ‘autistic-like personalities’ rather than an autism spectrum disorder.

Everyone agrees that there is an enormous variety in all our individual experience and histories, just as there is in our personalities and temperaments. Not everyone is an extravert and happy only with other people. Some display little emotional warmth and some are narcissists that do not care very much about others and often don’t pay much attention to other people. There are also perfectly neurotypical tendencies that tend to make life difficult: pursuing a specialised interest, being obsessive, enjoying strict routines, dithering over decision, and so on.

It seems to me entirely plausible that combinations of these social and nonsocial features can occur in one and the same person and can then present an autistic-like picture. Human social relationships are extremely complex,

condition it can provide a ‘no-blame’ explanation. This would explain why perfectly neurotypical people like the idea that they – or one of their neurotypical friends – may be a ‘little bit autistic’.

However, there is a conundrum. If you follow the argument above, these individuals do not have a medical condition. They may feel different from other people, but aren’t we all different and don’t we all have our problems?

And this is how I understand the campaign for neurodiversity. It would make perfect sense, for some people, to argue for abandoning the idea of autism as a separate and pathological condition. After all, these individuals do not suffer from any ‘condition’, and it is indeed wrong to say that they have cognitive or emotional ‘deficits’. They just have problems that might be a little bit worse than those of many other people. However, although I am entirely on the side of the neurodiversity campaign, I draw a line at

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deficits. I find this problematic – but, given that I have thought and written about cognitive deficits in autism all my life, I would say that, wouldn’t I? My deliberately provocative suggestion is to reconsider the mildest of the mild

read discuss contribute at www.thepsychologist.org.uk

including the whole of the autism spectrum. I am very well aware that this argument is still running and that it will take a lot of discussion and also empirical research to find out whether the line I want to draw can really be drawn.

But here is the line I would like to draw: people with autism really have a very different mind and different brain.

To me this has always been what attracted me most to autism. It is very rare and a precious gift to get a glimpse into another mind that operates on different assumptions and with different premises. However, there need to be other voices in this discussion. Should we believe only in continua and quantitative differences, or by contrast, in categorical and qualitative differences?

This is an enigma that is tantalisingly hard to resolve. I know which side I am on, but I am prepared to change my mind if the weight of the evidence convinces me.

Are we getting any closer to solving the puzzle? A critical step in this journey is to bust myths that have accumulated and to listen to voices from all parts of the community and from all those who are directly touched by autism. Myths and truths about autism have been intertwined in the many representations of autism in literature and film and our attitudes are often conflicted. We like to see autism as an interesting personality variant with potential for creative genius.

This is what films and fiction mostly portray. We can also see that autism can be a terrible obstacle to living an ordinary life. We find it easy to be sympathetic to young children with autism, but often hard in relation to some adults, let alone old people. If the voices of people with autism are also heard they will give an important counterbalance to researchers’ and professionals’ pronouncements. Only by putting together many different viewpoints will we eventually know what autism is really like.

The sheer quantity of publications and its presence on many dedicated web pages confirms that autism research has thrived in the last 25 years. It has flourished in particular in the UK, and some of our most talented psychologists are represented in this issue. It is thrilling to me to think that the UK still has a head start in the psychology of autism.

Uta Frith is Emeritus Professor at University College London u.frith@ucl.ac.uk

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FEATURE

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Autism – myth and reality Christian Jarrett talks to researchers, people with autism and their relatives, to find out what autism is really like

research assistant at the University of Connecticut and was diagnosed with autism at age three. ‘We have interests and talents like many people,’ she says, ‘but to say that we are superior in any way, it’s like we’re trying to justify our existence alongside other people, as if we have to keep up this myth, or nobody will want us.’

People with autism can be friendly and caring ublic awareness of autism has grown immensely in recent decades, thanks in large part to the 1988 multi-Oscar-winning film Rain Man. But so too has the spread of myth and misconception. Today few terms are hurled about with as much hype and abandon as ‘autism’ and ‘autistic’: worryingly, it even appears to have some currency as an insult (tinyurl.com/q5t8mdb). Thankfully the pernicious idea of autism being caused by ‘refrigerator mothers’ has been virtually eradicated. Instead we’re fed a near-daily diet of inaccurate autistic stereotypes, vaccine scare stories, and claims of autism epidemics and miracle cures.

This article attempts to set the record straight. From the idea that everyone with autism has a hidden talent, to the notion that all autistics are unfriendly, I’ll debunk popular myths about the condition.

At the same time, and with help from researchers, people with autism and their relatives, my aim is to convey a sense of what autism is really like.

P

Not everyone with autism is a genius

references

There’s an iconic moment in Rain Man, in which Dustin Hoffman’s autistic character counts in an instant the exact number of cocktail sticks dropped on the floor by a waitress. In other scenes he demonstrates incredible powers of memory and calendar calculation (identifying the day of the week for any given date). The success of

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Bishop, D.V., Whitehouse, A.J., Watt, H.J., & Line, E.A. (2008). Autism and diagnostic substitution: Evidence from a study of adults with a history of developmental language disorder.

Developmental Medicine & Child Neurology, 50(5), 341–345.

Ramachandran, V.S. & Oberman, L.M. (2006). Broken mirrors: A theory of autism. Scientific American, 295(5), 62–69.

the film has helped spread the mistaken idea that all or most people with autism are savants, with these and other exceptional talents.

This myth has also been helped along by popular books about autistic savants (including a chapter in Oliver Sacks’s 1985 classic The Man Who Mistook His Wife for a Hat and Other Clinical Tales) and by frequent media reports on gifted people with autism. Examples include the animal welfare expert Temple Grandin, whose life story was turned into an HBO film in 2010; and the creator of photorealistic cityscapes Stephen Wiltshire, who has appeared in numerous TV documentaries.

Although many people with autism have islands of relative or impressive strength – for example, superb maths skills or attention to detail – the reality is that approximately .05 per cent of the autistic population has an extreme talent or genius-level gift (no one knows the precise figure, but this estimate is from the National Autistic Society). The idea that everyone with autism has a gift may seem like a positive misconception, but it can create difficulties for autistic people and their parents.

‘It can be really discouraging for parents of children who are less able,’ says Dr Liz Pellicano, an autism expert at the Institute of Education in London. ‘It can be damaging because there’s an immediate perception that their child must be good at something, and they might not be.’

Allison Shefcyk agrees. She’s a

Hamilton, A.F.D.C. (2013). Reflecting on the mirror neuron system in autism.

Developmental Cognitive Neuroscience, 3, 91–105.

Happé, F. & Frith, U. (2009). The beautiful otherness of the autistic mind.

Philosophical Transactions of the Royal Society B: Biological Sciences, 364(1522), 1345–1350.

Howlin, P., Savage, S., Moss, P. et al.

(2014). Cognitive and language skills

Perhaps the most hurtful of the myths about autism is the idea that people with the condition are, by nature, asocial and selfish. It’s true that social difficulties are a hallmark of the condition, and there is plenty of research showing that people with autism struggle with ‘theory of mind’ (ToM) tasks that involve putting themselves in other people’s shoes.

However, it’s important to realise that ToM involves two elements – a cognitive component and an emotional component.

Although people with autism often struggle with the cognitive challenge of taking another person’s perspective, there is not necessarily anything lacking in their feelings for other people’s joy and pain.

Michelle Duncan is the mother of a nine-year-old boy with autism, and was diagnosed as being on the autism spectrum herself just 18 months ago. She can understand why people might get the wrong impression that autistic people are uncaring. ‘I’m not an outwardly emotional person, and there are times when I don’t feel like mixing in a group,’ she says.

But she adds, ‘I help other people to the extent that it’s a detriment to myself. And actually one of the most common features of autistic people is that they have an innate sense of justice – they can’t stand to see injustice around them, even if it’s not directed at them.’

Kim Southall can also understand how the uncaring/asocial myth has spread. Kim is the mother of a seven-yearold boy with autism and she co-founded the Autism Aware UK charity (autismaware.co.uk) with her husband

in adults with autism. Journal of Child Psychology and Psychiatry, 55(1), 49–58.

Senju, A., Maeda, M., Kikuchi, Y. et al.

(2007). Absence of contagious yawning in children with autism spectrum disorder. Biology Letters, 3(6), 706–708.

Taylor, B., Jick, H. & MacLaughlin, D. (2013). Prevalence and incidence rates of autism in the UK: Time trend

from 2004–2010 in children aged 8 years. BMJ Open, 3(10), e003219.

Usui, S., Senju, A., Kikuchi, Y. et al (2013).

Presence of contagious yawning in children with autism spectrum disorder. Autism Research and Treatment. doi:10.1155/2013/971686 Volk, H.E., Lurmann, F., Penfold, B. et al.

(2013). Traffic-related air pollution, particulate matter, and autism. JAMA Psychiatry, 70(1), 71–77.

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The MMR vaccine does not cause autism In 1998 the British paediatrician Andrew Wakefield and his colleagues published a small study in the respected Lancet medical journal that implied the MMR vaccine (for measles, mumps and rubella) plays a causal role in autism. The world’s media sensed a scare story and they fed parental fears with years of sensational headlines. In fact, many large-scale studies have failed to find a link between the MMR vaccine and autism. The Lancet paper was retracted in 2010, judged to be flawed and fraudulent. The same year Wakefield was struck off the doctors’ register after being found guilty of dishonesty and professional misconduct.

The MMR/autism myth continues to cost lives, as vaccine rates struggle to reach pre-scare levels.

Jon. ‘People with autism tend to be quite aloof and they don’t know how to be in certain social situations,’ she says. ‘Some of them also don’t like to be held close because they have a sensitivity to touch, but it’s absolute rubbish to say that they’re not loving or capable of love. Our son is really lovely and all the people I’ve ever met with autism, they’ve all been very loving.’

The myth of the unfeeling autistic person has also been given oxygen thanks to studies suggesting that, compared with ‘normal people’, those with autism are less prone to contagious yawning – interpreted by some researchers as an automatic marker of empathy. For example, in 2007 a team led by Atsushi Senju at Birkbeck College reported that 25 neurotypical children yawned more while watching yawning videos, whereas 24 children with autism did not.

Far less publicised, however, was a failed replication of that finding, published by the same group (Usui et al., 2013). This time the children with autism were prompted to look at faces in the yawning videos and they now displayed just as much contagious yawning as controls. This result ‘corroborates previous findings that individuals with ASD can demonstrate behavioural contagion,’ the researchers said.

People with autism do not have a broken mirror neuron system A related autism myth concerns mirror neurons, one of the most hyped concepts in neuroscience (see my piece at tinyurl.com/qbupkco). Although the majority of research into the existence and function of mirror neurons has been performed in monkeys, this hasn’t stopped

evangelists proposing that these cells do not have an imitation problem per se, are the neural source of human empathy, Dr Hamilton explains, but rather they human culture and basic social skills such struggle to decide when and how much as imitation. Suggestions have followed to imitate – a subtle social skill that most from University of California of us take for granted. neuroscientist Vilayanur S. Ramachandran, Of course, some people with autism and others, that the reason people with are unfriendly or uncaring, just as some autism have social difficulties is because neurotypical people are. But it’s time to they have a broken mirror neuron system. abandon the broken mirror theory and In a cover article for Scientific the related hurtful myth that lack of American in 2006 feeling and emotion is Ramachandran and an inherent part of the his colleague condition. In fact, it is “it’s absolute rubbish to Lindsay Oberman arguably the rest of us say that people with explained their who need to show more autism are not loving or reasoning: ‘Because understanding of what capable of love” these [mirror] the world is like from the neurons appeared perspective of a person with to be involved in autism. abilities such as empathy and the Allison, the University of Connecticut perception of another individual’s researcher with autism, provides a clue. intentions, it seemed logical to She likens life with the condition to hypothesize that a dysfunction of the visiting a foreign land. ‘It’s like taking mirror neuron system could result in somebody who talks a foreign language some of the symptoms of autism. Over to a country whose customs and language the past decade, several studies have they’re not familiar with,’ she says, ‘and provided evidence for this theory.’ yet they’re still expected to know the However, this early support for rules, and they get in a lot of trouble for the broken mirror theory has not been not knowing them.’ sustained. In 2013, in a fatal development for the theory, Dr Antonia Hamilton at Celebrating strengths, UCL, an expert on mimicry and imitation in autism, published a systematic review recognising difficulties of 25 relevant studies including brain Central to a better understanding of imaging and eye-tracking research. autism is striking a balance – recognising Overall, she found little evidence to the advantages of the condition, but also support the broken mirror theory. acknowledging the difficulties it can ‘I don’t think it explains anything,’ impose on people with the disorder and she says. ‘It doesn’t tell us anything that’s their relatives. Related to this is specific to autism because we’ve got so appreciating the huge variety on the many indications that children can autistic spectrum. At one end are those imitate when they’re getting the right with severe autism, who may be noninputs.’ Contrary to the predictions of the verbal and unable to care for themselves. broken mirror theory, people with autism At the other, are those with Asperger’s, for

read discuss contribute at www.thepsychologist.org.uk

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whom the effects of the condition may be far more subtle (note that changes to US psychiatry’s diagnostic code in 2013 mean Asperger’s is no longer classified as a separate condition).

‘People who are waiting for a diagnosis, all they tend to hear about are the negatives,’ says Kim. When she first learned that her son could be autistic, she had a sense that ‘I’m going to raise this child who won’t do well at school, probably won’t get a job, and will need care for the rest of his life.’ Being a parent of a child with autism has been a challenge – no question. Kim’s son couldn’t speak until he was four, has full time one-to-one support at school, and needs medication to get to sleep at night.

But now, aged seven, his reading, writing and numeracy are ahead of his peers. ‘He’s proved to us that no matter what people’s perceptions are, or what you read, they are individuals, and they’ll go at their own pace, and they can achieve anything,’ says Kim. ‘It isn’t all doom and gloom.’

This is the message backed by groups like the Autism Friends Movement (AFM), whose aim is ‘to educate the

public that the autism spectrum is not always a disability’. AFM and other elements of what’s become known as the ‘autism pride movement’ also aim to give people on the autism spectrum their own voice. Everyone I spoke to welcomed this aspect of the pride movement.

‘Much of current research is developed under what professionals believe parents need and want, but rarely ask us [people with autism] directly for our opinions; even when formulating research and policy that has a direct impact on our lives,’ says Allison. ‘Call it pride, call it perseverance, call it what you may; but speaking for yourself and others with the hope that they can have a better tomorrow is a wonderful thing that must be cultivated for people with autism.’

Controversy Where things get more contentious is with the campaign by AFM and others against the development of ‘cures’ for the condition. ‘We don’t want to lose who we are and have future autistics wiped through genetic screening,’ says the AFM

website. But not everyone touched by autism agrees with this approach.

‘I understand why some people are offended by the term “disorder”, says Kim, ‘but if somebody was to give me a cure, I would take it because I know how difficult life is for my son.’

Part of this controversy is about how to characterise autism – as a disorder or simply a different way of being. AFM state that autism is a ‘difference to be valued’. In an article published by the Royal Society in 2009, the leading autism experts Professors Francesca Happé and Uta Frith refer to ‘the beautiful otherness of the autistic mind’. Others go further.

Michelle suggests ‘exaggerated excellence’ as a moniker for the condition. ‘I think that when you’re autistic anything you set out to achieve, you go that bit further – more into the detail,’ she says.

But while these attempts to romanticise and celebrate the condition are laudable, they clash with many people’s everyday experiences. Take, for example, the perspective of Dr Carl Walker, a psychologist and mental health expert at Brighton University. He

Creativity I’ve heard it said I’m some quaint, programmed husk Who cannot think beyond a rigid box.

Cold facts, harsh figures, dance at my fingertips While sweet imagination slips me by.

But I can spot the spondee in a verse And signpost trochees, dactyls, and iambs; Uproot acrostics in a pyrrhic rush, Uncover the choree and the dibrach.

The anapaest and amphibrach are clear As colours in a painting, to my mind.

The cog-wheels of each line keep churning round As dative clauses latch onto the vine.

And I can spot grand theories spinning round And sit back as they crash, crumble, and die.

And then I pick the pieces up, and form Afresh, new truths from old malignant lies.

And what about the beauty of the box?

Why ever would I want to think outside?

When I can grasp its roots and functions, and Gain a creative angle you’re denied?

My world’s not yours.

I spy what you cannot And yet am blind to what you clearly see.

We’re different, yes.

But don’t infer from that That my brain lacks your creativity.

By Jonathan Andrews, a 20-year-old with autism, for the Create Art for Autism competition – see www.createartforautism.com. For more of Jonathan’s work, see tinyurl.com/omz9vcu and tinyurl.com/ppf3n6h

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remembers the troubled school days of his older brother, who has a diagnosis of Asperger’s and is unemployed. ‘I like the idea of celebrating otherness,’ Dr Walker says, ‘so there’s something very attractive and seductive about [Happé and Frith’s] description, but unfortunately 16-, 15and 14-year-old angry young men at school don’t have the capacity to see and understand beautiful otherness.’

For people with less severe autism or Asperger’s, who attend mainstream schools, Dr Walker’s assessment is blunt: ‘It can be a fucking horror show,’ he says.

‘It’s dreadful. Much of the legacy that people with autistic spectrum disorder have comes from the exclusion, the marginalisation, the abuse, the difficulties they have at school, trying to fit into a world that doesn’t make sense to them.’

For a further sense of the reality of autism for many, it’s perhaps also worth heeding the findings from a recent study that investigated the current status of 60 people first diagnosed with autism as children between 1950 and 1979 (Howlin et al., 2014). Although they all have intelligence in the ‘average range’ (i.e. an IQ of over 70), Patricia Howlin and her colleagues found that only 27 per cent of them were now living independently or semi-independently – the others were being cared for at home or in a residential facility.

Looking ahead Unfortunately, the desire persists among the media, and some experts, to encapsulate autism in a single unifying theory. Last year, for example, an article about the new ‘intense world’ theory of autism (tinyurl.com/p5o6879) attracted great interest. Developed by the head of the EU’s ambitious Human Brain Project, Henry Markram (who has an autistic son), and his wife Kamila (a neuroscientist and autism researcher), the theory proposes that the strengths and impairments of autism are caused by oversensitive sensory and emotional systems in the brain.

Although well-intentioned, this new theory, and others like it, risks falling into the old traps of oversimplification and romanticisation. Like the broken mirror theory it could also be plain wrong and, when promoted too rapidly, lead to misguided treatments, such as the withdrawal of stimulation. Writing for the Simons Foundation Autism Research Initiative (see tinyurl.com/k25kteo), Professors Anna Remington and Uta Frith pointed out that there is in fact huge variation in sensory sensitivity among people with autism, and they fear that the deliberate, routine

Is there really an autism epidemic?

It’s true the number of children being diagnosed with autism has increased hugely over recent decades. There was a five-fold increase in the UK during the 1990s alone, although there’s evidence this rise had plateaued by the early 2000s (Taylor et al., 2013). According to the National Autistic Society, the prevalence in the UK is now around 1 in 100, although they warn that this is an approximation. In March 2014 the Centers for Disease Control and Prevention in the US declared that the prevalence in that country is now 1 in 68 (this compares to a prevalence estimate of 1 in 150 in 2002).

The dramatic increase in rates of autism has led to scare stories about possible causes (see box on MMR vaccine), and research into possible environmental causes, such as air pollution (Volk et al., 2013). However, the reasons for the rise are currently subject to debate, and many experts think it is probably almost entirely due to a mix of broadened diagnostic criteria and greater awareness of the condition.

Such an argument was supported by a study published in 2008 by Dorothy Bishop and her colleagues. They studied 38 adults diagnosed with a developmental language disorder (but specifically not autism) in their childhood, and found that 12 of them would meet contemporary diagnostic criteria for autism or autism spectrum disorder.

withdrawal of stimulation could be a harmful approach.

The pair are also concerned about the Markrams’ claim that this minimisation of environmental stimulation could be a way for parents to unleash their autistic children’s inner genius. In an interview with the Huffington Post (tinyurl.com/lot68ec), for example, the Markrams stated that ‘We actually think if you could develop a filtered environment in the early phase of life you could end up with an incredible genius child without many of the sensory challenges.’

Sadly, this kind of talk risks sending the message that autistic children’s worth is tied to their having some hidden super ability (the very sentiment that we heard earlier is resented by Allison and other people with autism).

Final thoughts The reality is that the simple term ‘autism’ conceals a world of complexity.

A recurring theme to emerge from my

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conversations with parents, researchers and people with autism was the diversity of autism experiences. For some people, autism may truly seem like a gift. For others, it has made life intolerably difficult.

And there are acres of ground between these poles. We need to respect these differences and avoid the temptation to simplify the autism story.

We must also be careful with the language we use – talk of disorder and cures can be offensive to people who feel their autistic nature is a fundamental part of who they are. That doesn’t mean they don’t want help. It does mean recognising that people with autism have feelings, giving them a voice, and being sensitive to the way we discuss the challenges they face in world that’s dominated by ‘neurotypicals’.

I Dr Christian Jarrett is editor of the British Psychological Society Research Digest and author of Great Myths of the Brain, published by Wiley-Blackwell this month. christianjarrett@gmail.com

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Students with more autistic traits make fewer altruistic choices In the Journal of Autism and Developmental Disorders

Most people with autism have difficulties socialising and connecting with others. It’s generally agreed that part of this has to do with an impairment in taking other people’s perspective. More specifically, an emerging consensus suggests that autism is associated with having normal feelings for other people, but an impaired understanding of them. Little explored before now is how this affects the behaviour of people with autism towards others who need help.

Leila Jameel and her colleagues surveyed 573 students using the 50-item Autism-Spectrum Quotient, which is a questionnaire designed to tap key traits associated with autism spectrum disorder. Then they asked 27 of the top 10 per cent of scorers and 24 of the bottom 10 per cent to complete a new test of prosocial behaviour known as the Above and Beyond Task.

The participants read scenarios that conflicted another person’s needs with their own. They first stated how they would act in this scenario, and then they chose from three fixed alternatives, ranging from selfish, to medium prosocial, to high prosocial (or ‘above and beyond’). For example, one scenario involved seeing a man fall in the street while the participant was rushing to work for a meeting. After giving their own response as to how they would react, the three fixed options were: carry on walking; help him up and carry on walking; help him up and offer to take him to sit down on a nearby bench.

High scorers on the Autism-Spectrum Quotient more often chose the selfish, low prosocial options and less often chose the high prosocial options, as compared with low scorers on the questionnaire. The high scorers also gave more selfish open-ended answers when first asked how they would respond to each scenario.

Another measure was how satisfied the participants thought they would be with their chosen course of action, and how satisfied the needy person in the scenario would be. The high and low scorers on the Autism-Spectrum Quotient did not differ in their ratings of the needy person’s satisfaction with the different response options. However, the high scorers tended to say they personally would be more satisfied after making more selfish choices, and less satisfied after more altruistic choices.

This is a sensitive topic. If misinterpreted or oversimplified the findings risk bolstering the stigmatisation of people with autism. It’s important to realise that the study did not involve people diagnosed with autism, but rather a ‘sub-clinical population’ (in the The material in this section is taken from the researchers’ words) who scored highly on a self-report measure of Society’s Research Digest blog at autistic traits. Moreover, the study did not involve real-world helping www.researchdigest.org.uk/blog, and is behaviour. It was based on hypothetical scenarios, which raises written by its editor Dr Christian Jarrett and problems of interpretation. For example, perhaps people with more contributor Dr Alex Fradera. Visit the blog for autistic traits are simply more honest full coverage including references and links, about how they would behave. Perhaps they find it difficult to, or choose additional current reports, an archive, not to, treat the fictional character as they would a real person. comment and more.

With these caveats in mind, these results hint tentatively at how autistic traits could affect people’s helping behaviour in the real world.

Subscribe to the fortnightly email, friend, follow The researchers also said their new Above and Beyond Task could be and more via www.researchdigest.org.uk/blog used to measure the outcomes of training programmes designed to help people with autism. ‘Despite considerable attention to social skills training in people with Autism Spectrum Disorder,’ write Jameel and colleagues, ‘relatively little is known about the efficacy of such programmes or the key ingredients for success.’ CJ

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Combining the old and the new Jon Brock looks at Bayesian and predictive coding accounts of autistic cognition

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Bernard Rimland’s classic text, Infantile Autism (1964), marked the beginning of research on autism as a disorder of cognition. Rimland’s hypothesis – that autistic individuals have difficulty relating new and old experiences – has recently been updated in the form of Bayesian and predictive coding accounts of the condition. These new approaches have the potential to explain a wide range of symptoms associated with autism, linking differences in cognition to their underlying neurobiology. But as with all contemporary theories of autism, the challenge will be to address the huge variability that exists within the autism spectrum and the overlap with other supposedly distinct conditions.

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How might researchers differentiate between alternative accounts of Bayesian and predictive coding?

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Clark, A. (2013). Whatever next?

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Behavioral and Brain Sciences, 36, 181–204.

‘How did Nate Silver predict the US election?’ www.theguardian.com/ science/grrlscientist/2012/nov/08/ nate-sliver-predict-us-election

Adams, R.A., Stephan, K.E., Brown, H.R. et al. (2013). The computational anatomy of psychosis. Frontiers in Psychiatry, 4, 47.

Brock, J., Norbury, C., Einav, S. & Nation, K. (2008). Do individuals with autism process words in context? Cognition, 108, 896–904.

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ark Rimland was not like other babies. As his father, Bernard, later recalled, ‘Mark was a screaming, implacable infant who resisted being cuddled and struggled against being picked up’. The paediatricians were baffled, and it was only after his mother, Gloria, remembered reading about Leo Kanner’s description of ‘autism’ in a psychology textbook that a diagnosis was eventually made.

Today, autism is considered to be a neurodevelopmental disorder arising from the complex interplay of genetics and environmental factors during preand early post-natal development.

However, in 1958, when Mark was first diagnosed, it was generally regarded as the child’s reaction to a lack of maternal affection – the infamous ‘refrigerator mother’ hypothesis. Bernard knew that this was nonsense and set out to determine the real cause of his son’s difficulties. His literature search led in 1964 to the publication of a book, Infantile Autism, that was to become a landmark in autism research. Not only did he conclusively debunk the refrigerator mother hypothesis, Rimland also set out his own revolutionary theory.

Autism, he argued, was a cognitive dysfunction. The ‘diversity of symptoms and manifestations’ could be traced to ‘a single critical disability: The child with early infantile autism is grossly impaired in a function basic to all cognition: the ability to relate new stimuli to remembered experience… The child is thus virtually divested of the means for deriving meaning from his experience…

Review of Clinical Psychology, 9, 555–587.

Fletcher, P.C. & Frith, C.D. (2009).

Perceiving is believing: A Bayesian approach to explaining the positive symptoms of schizophrenia. Nature Reviews Neuroscience, 10, 48–58.

Frith, U. (1989). Autism: Explaining the enigma. Oxford: Blackwell.

Frith, U. & Snowling, M. (1983). Reading for meaning and reading for sound in

He cannot integrate his sensations into a comprehensible whole.’

In his subsequent work, Rimland moved away from cognitive theorising.

He promoted some questionable biomedical interventions and was a strong advocate of the now discredited notion that autism is caused by traces of mercury in vaccines. However, the ideas laid out in Infantile Autism inspired a generation of researchers to investigate autistic cognition.

Half a century later and eight years after his death, Rimland’s original ideas are back in vogue. In a 2012 paper, Liz Pellicano and David Burr proposed that autistic cognition could be understood in terms of Bayesian statistics – a mathematical framework for combining new and old information. Autism, they suggested, is characterised by a reduced influence of prior knowledge. In response to Pellicano and Burr, other researchers have argued that autistic cognition might be more usefully characterised in terms of a related theoretical framework, predictive coding and, more specifically, how the brain deals with the inevitable discrepancies between reality and expectations.

Central coherence Rimland’s ideas about autistic cognition were highly speculative, based on observation and intuition alone. However, UK psychologists Beate Hermelin and Neil O’Connor were already beginning to conduct experiments that spoke directly to his hypothesis (Hermelin & O’Connor, 1967).

In one study they gave children a series of words to repeat out loud.

As expected, non-autistic children made fewer errors if the words made up meaningful sentences. ‘The fish swims in the pond’ was easier to recall than the random word string ‘By is go tree stroke lets’. Children with autism, however, failed to show this effect, suggesting that they were repeating the individual words without considering the meaning of the

autistic and dyslexic children. Journal of Developmental Psychology, 1, 329–342.

Friston, K.J., Lawson, R. & Frith, C.D. (2013). On hyperpriors and hypopriors: Comment on Pellicano and Burr. Trends in Cognitive Sciences, 17, 1.

Geschwind, D.H. & Levitt, P. (2007).

Autism spectrum disorders: Developmental disconnection

syndromes. Current Opinion in Neurobiology, 17, 103–111.

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Time to give up on a single explanation for autism. Nature Neuroscience, 9, 1218–1220.

Hermelin, N. & O’Connor, N. (1970).

Psychological experiments with autistic children. Oxford: Pergamon Press.

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sentence, exactly as Rimland might have predicted.

Hermelin and O’Connor were unaware at the time of Rimland’s book, but it inspired their PhD student Uta Frith, to continue this line of work.

In one ingenious experiment (Frith & Snowling, 1983) she and Maggie Snowling gave children 10 sentences to read out loud. Each contained a homograph – a word such as tear with a dual meaning. By noting how the children spoke the homographs, Frith and Snowling could determine which meaning had been assigned – and whether it made sense in the broader context of the sentence. Children with autism performed poorly on this task.

They would pronounce tear the same, regardless of whether the sentence suggested crying or ripping, indicating that they had failed to take the earlier sentence context into account. These and other findings led Frith to propose her ‘weak central coherence’ account of autism. Autistic cognition, she argued,

is characterised by a focus on detail and a failure to ‘weave together’ information to extract meaning (Frith, 1989).

Central coherence was, in essence, a fleshing out of Rimland’s earlier proposal.

It provided a way of understanding some of the difficulties facing people with autism, including problems with language and social understanding where contextual nuances are often critical.

Importantly, however, the account also emphasised the strengths of autistic individuals. Being able to ignore the bigger picture and focus on the details might in some circumstances be advantageous. Frith and her colleague, Amita Shah had found that children with autism performed relatively well on certain visuo-spatial tasks that required attention to detail. For example, on the embedded figures test in which they had to locate geometric shapes hidden in a larger more complex picture, autistic children outperformed non-autistic children of similar overall cognitive ability (Shah & Frith, 1983).

MARK RIMLAND/KENSINGTON GALLERY, SAN DIEGO & GERARDO YEPIZ/ACAMONCHI ART STUDIO, SAN DIEGO

Bernard Rimland’s quest to understand his son Mark – who created this artwork – led to the publication of Infantile Autism in 1964

Understanding DCM: Ten simple rules for the clinician. Neuroimage, 83, 542–549.

Lawson, R.P., Rees, G. & Friston, K.J. (2014). An aberrant precision account of autism. Frontiers in Human Neuroscience, 8, 302.

Mitchell, P., Mottron, L., Soulières, I. & Ropar, D. (2010). Susceptibility to the Shepard illusion in participants with autism: Reduced top-down

influences within perception? Autism Research, 3, 113–119.

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Trends in Cognitive Sciences, 16, 504–510.

Rimland, B. (1964). Infantile autism: The syndrome and its implications for a neural theory of behavior. Chicago: Appleton-Century-Crofts.

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The central coherence account proved highly influential. Over the years, it has inspired hundreds of studies and has succeeded in focusing attention on the non-social, non-diagnostic features of autism. However, the account remains frustratingly vague. The term ‘central coherence’ is not one that is recognised in mainstream cognitive psychology and it’s unclear what cognitive mechanism might actually be involved. It’s more a description of the kind of explanation researchers are looking for than an explanation in and of itself. Pellicano and Burr’s Bayesian account is an attempt to go beyond central coherence and pin it down to something more precise, testable and, ultimately, falsifiable.

The Bayesian perspective The basic premise underlying Bayesian statistics is that information is inherently unreliable, so a better estimate of reality comes from combining new information with prior knowledge. Perhaps the bestknown example of Bayesian statistics in action came from the 2012 US presidential election campaign, when the New York Times blogger Nate Silver was able to correctly predict the results in all 50 states. Rather than just relying on the latest opinion poll, Silver, developed a mathematical model of voting intentions.

He then used Bayesian theory to incrementally adjust the model in the light of each new opinion poll. The weight put on a new poll depended on its margin of error – how much it fluctuated from poll to poll and how well it had predicted the outcome of previous elections.

The Bayesian principles underlying Silver’s model have also been applied to cognitive theories of perception. In the same way that an opinion poll has a margin of error, incoming sensory information is inherently ambiguous and unreliable. For instance, the light hitting the back of the eye could come from an infinite number of different arrangements of objects in the real world. However, the

Shah, A. & Frith, U. (1983). An islet of ability in autistic children. Journal of Child Psychology and Psychiatry, 24, 613–620.

Teufel, C., Subramaniam, N. & Fletcher, P.C. (2013). The role of priors in Bayesian models of perception.

Frontiers in Computational Neuroscience, 7, 25. van Boxtel, J.J. & Lu, H. (2013). A predictive coding perspective on

autism spectrum disorders. Frontiers in Psychology, 4, 19. van de Cruys, S., de-Wit, L., Evers, K. et al. (2013). Weak priors versus overfitting of predictions in autism: Reply to Pellicano and Burr (TICS, 2012). i-Perception 4, 95–97.

Wass, S. (2011). Distortions and disconnections: Disrupted brain connectivity in autism. Brain and Cognition, 75, 18–28.

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problem is constrained by our experience of what objects are likely to be out there, and we are rarely conscious of the potential for alternative interpretations.

Pellicano and Burr’s proposal is not that people with autism ignore prior knowledge altogether, but rather that their priors are broader – and so perception is less constrained by past experience. In terms of the US election analogy, this is akin to placing less weight on previous opinion polls and thus being extra-sensitive to the most recent opinion poll. The result, Pellicano and Burr suggest, is that the world is somehow ‘more real’ for people with autism. There is, however, some poetic licence here.

Under most circumstances, the prior information is useful and so improves the accuracy of perception, bringing us closer to reality (see Teufel et al., 2013).

A notable exception is the case of visual illusions. In the Shepard illusion, for example, the dimensions of the two table tops are identical (see Figure 1).

However, our experience of rectangular surfaces in the real world leads us to perceive the table on the left as being long and thin, while the one on the right appears short and fat. Prior knowledge helps us to make a judgement about the three-dimensional object being represented, but it hinders judgements about the actual two-dimensional image.

Consistent with the Bayesian account, Peter Mitchell and colleagues found that people with autism were less susceptible to this effect than non-autistic people, suggesting in turn that they are less affected by what Mitchell and colleagues term ‘the curse of knowledge’ (Mitchell et al., 2010).

Pellicano and Burr’s Bayesian account is essentially a mathematical formalisation of Mitchell and colleagues’ proposal – and of Rimland’s original idea. But this formalisation is important. It finally grounds research on autistic cognition in mainstream cognitive psychology research. It also generates novel and testable predictions. In any situation where performance can be understood in terms of the combining of current and prior information, prior knowledge should be underweighted in individuals with autism. While the current emphasis is on visual perception, the Bayesian framework could in principle be applied to a wide range of symptoms associated with autism.

Predictive coding Rimland’s initial focus in Infantile Autism was on cognition, but he was conscious that differences in information processing

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must ultimately arise from differences in brain function.

‘In some very real way’, he suggested, ‘memories, thoughts, and ideas are somehow locked into separate compartments of the autistic child’s Figure 1: The Shepard illusion – knowledge of three-dimensional brain’. This same objects makes the two table surfaces appear to have different intuition underpins proportions, despite having the same two-dimensional shape the more recent ‘underconnectivity’ and colleagues suggest that autism could hypothesis (see Wass, 2011), according in fact be characterised by over-precise to which, the symptoms of autism arise prediction errors (van de Cruys et al., due to a lack of communication between 2013). Somewhat counterintuitively, this different parts of the brain. There is now could have very similar effects to reduced growing evidence for atypical brain precision because even small deviations connectivity in autism, but the from predictions are treated as significant relationship between brain activity and prediction errors. cognition in autism remains opaque.

Within the predictive coding In a commentary on Pellicano and framework the brain is conceived as Burr’s paper, Karl Friston and colleagues a hierarchy, with information cascading suggested that the Bayesian account of up and down the different levels. Brain autism could be usefully reframed in Region A will make predictions about terms of the predictive coding framework activity in Brain Region B, and the (Friston et al., 2013; see also van Boxtel prediction error will then be sent back & Lu, 2013). Like the Bayesian approach, to Brain Region A. Region B will interact this concerns the way in which old and with Region C in a similar way, and so on new information are combined, but it down the chain. Differences in predictive provides a more explicit link to neural coding thus correspond mechanisms. Predictive directly to the way in coding starts with the simple which brain regions at idea that the main purpose of “Autism is complicated different levels of the the nervous system is to try and messy… There are hierarchy interact. In to anticipate what will no clear boundaries” principle at least, it happen next. Put another should be possible to test way, the organism tries to hypotheses about atypical minimise its prediction connectivity by applying dynamic causal errors – the difference between what modelling to neuroimaging data from it predicted would happen and what individuals with autism. This involves actually transpired. To some extent, generating different models of how brain prediction errors are inevitable. A key regions interact during a particular task feature of predictive coding, therefore, is and then determining which model that the organism encodes the precision comes closest to predicting the of its predictions – that is, how confident neuroimaging data recorded (see Kahan it is in their accuracy. If precision is low, & Foltynie, 2013). then the organism takes even large Predictive coding also offers insights prediction errors in its stride. But if into how changes in brain connectivity precision is high and strong predictions and cognition might arise from are violated, this is cause to sit up, take differences at the synapse (Lawson et al., notice – and learn from the experience, 2014). The precision of predictions is allowing better predictions to be made thought to involve NMDA receptors, in future. which act like an amplifier in a hi-fi Friston and colleagues hypothesise system, determining the size of a neuron’s that precision is reduced in autism: response to prediction errors. NMDA individuals with autism make less strong receptors are part of the glutamate predictions and so their perception is neurotransmitter system, which in turn dominated by the noisy, ambiguous interacts with other neurotransmitters, sensory information. However, in a including serotonin, dopamine and further commentary, Sander van de Cruys

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GABA, as well as the hormone oxytocin, all of which have all been implicated in autism. There may, therefore, be a number of different but converging routes to atypical predictive coding and connectivity.

The schizophrenia connection While still in their early days, the Bayesian and predictive coding accounts of autism have considerable potential for understanding autistic cognition, its underlying neurobiology and, ultimately, its genetics. But like all theories of autism, they face a number of challenges.

Prominent amongst these is to specify exactly how autism differs from other conditions. In particular, very similar accounts have been proposed to explain schizophrenia (see Adams et al., 2013).

Historically, autism was considered to be an early-onset form of schizophrenia, and there are certainly overlaps between the two conditions (see De Lacy & King, 2013). Both are associated with impaired social reasoning and executive skills, as well as a reduced sensitivity to context (although the term ‘central coherence’ is not used in the schizophrenia literature).

Both have been attributed to reduced or atypical brain connectivity, and certain genetic variations appear to convey risk for both conditions. There are, however, some clear differences. As Rimland remarked in Infantile Autism, ‘the writer is reminded of the story of the two men who were indistinguishable in appearance except that the tall thin one had a red beard and only one leg’ (p.68).

In particular, schizophrenia is associated with hallucinations and delusions in schizophrenia, which are not generally present in autism. Paul Fletcher and Chris Frith (2009) have argued that these ‘positive’ symptoms can be understood as the failure of predictive coding. Ordinarily, our internally generated thoughts and actions have highly predictable consequences – because we have made them ourselves.

However, if prediction breaks down, then our own actions may feel like we didn’t initiate them. Likewise, our inner voice may seem like it is someone else’s. The question then is, if people with autism also have issues with predictive coding, why don’t they too experience hallucinations and delusions?

One possibility is that autism and schizophrenia are both disorders of predictive coding, but the exact nature of the impairment is different. However, it is also important to consider the different developmental trajectories. In schizophrenia, atypical predictive coding

is occurring in the context of relatively well-developed adult internal model of the world. In autism the same atypicality present from very early in life (and possibly before birth) would entail that the individual’s model of the world is atypical from the start.

Studies directly comparing autism and schizophrenia may prove particularly useful in refining accounts of both disorders. However, there is an underlying assumption here that autism is a distinct condition that a person either does or does not have; and that it makes sense, therefore, to think of a theory of autism – an explanation that applies to all or at least the majority of people with autism. This view, however, is one that is increasingly under question.

One autism or many?

As an appendix to Infantile Autism, Rimland provided an 80-item symptom checklist to assist in the diagnosis of autism. Total scores over a certain threshold indicated that the child was autistic. Although many different combinations of symptoms could lead to an autism diagnosis, Rimland’s assumption was that the variation reflected different manifestations of the same underlying condition. Modern diagnostic checklists work in much the same way (and carry the same assumption), but the concept of autism is far broader than in the 1960s, and the heterogeneity within autism is accordingly even greater. Two individuals may both meet diagnostic criteria for an autism spectrum disorder but present with very few symptoms in common.

Recognition of this heterogeneity problem is growing. In an influential 2007 paper, Daniel Geschwind and Pat Levitt argued that we should think of ‘the autisms’ (plural) as a collection of disorders that share some superficial similarities. The central challenge for autism researchers, then, is to tease apart the various autisms in order to identify the most appropriate interventions and support required by any individual. One possibility, therefore, is that the Bayesian/predictive coding account only applies to a subset of the many autisms. In other words, there will be some autistic people who show atypical priors or precision across a wide range of situations. Other individuals will be similar to non-autistic people in this regard – and would, therefore, require an alternative explanation for their symptoms.

A different and arguably more radical viewpoint is that we should stop thinking about syndromes like autism altogether

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and instead focus research efforts on specific symptoms (Happé et al., 2006).

Rather than considering atypical priors or precision to be a whole-brain phenomenon affecting all of cognition equally, it might make more sense to think of atypicalities in relation to specific brain systems and cognitive processes.

Our own work on language comprehension tends to support this view (Brock et al., 2008). A strong prediction of the Bayesian/predictive coding account is that children with autism should make less use of contextual information when identifying spoken words. By testing autistic children with a wide range of language skills, as well non-autistic children with and without language impairment, we were able to show that context sensitivity was in fact related to a child’s degree of language impairment irrespective of whether they had an autism diagnosis.

What next?

The issues that face the Bayesian and predictive coding accounts of autism are by no means unique. Autism is complicated and messy. Almost every aspect of cognition can be affected, but the pattern of strengths and difficulties varies hugely across the autistic population. Even so-called ‘core’ symptoms manifest differently in different individuals and at different stages of development. There are no clear boundaries. Autism overlaps with a wide range of other supposedly distinct conditions and appears itself to have multiple different causes.

Despite his remarkable percipience, it is now apparent that Rimland wildly underestimated the complexity of the challenge he faced. Indeed, it seems unlikely that there will ever be a straightforward answer to the autism puzzle. Seen in this light, the Bayesian and predictive coding accounts of autism are clearly over-simplistic, but they do at least provide a framework for testing hypotheses and guiding research. As Rimland’s successors, we may at last be edging closer to an understanding of how and why autistic individuals think differently to those of us without autism.

Jon Brock ARC Centre of Excellence in Cognition and its Disorders, Macquarie University, Australia jon.brock@mq.edu.au

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Risk and resilience in the developing brain Mayada Elsabbagh looks at lessons from autism For over a decade now, researchers have explored the developmental pathways leading to autism early in life. Converging evidence suggests that within the first year of life, remarkably little overt behavioural risk signs of the condition can be detected. Yet, dynamic changes in early brain development lead to divergent and increasingly variable pathways over time. There is also emerging evidence for resilience, where some infants may overcome the impact of genetic risk through active processes of neural reorganisation. Improvements in understanding risk processes in autism have great potential in informing clinical practice. The process of translating this knowledge into community impact rests on careful consideration of ethical and social issues.

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Elsabbagh, M. & Johnson, M.H. (2010).

Getting answers from babies about autism. Trends in Cognitive Sciences, 14(2), 81–87.

Zwaigenbaum, L., Bryson S., Lord, C. et al. (2009). Clinical assessment and management of toddlers with suspected autism spectrum disorder: Insights from studies of high-risk infants. Pediatrics, 123, 1383–1391.

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stimates of the global prevalence of autism vary considerably, reaching up to 1 per cent of the total population and even higher in few countries (Elsabbagh, Divan, et al., 2012).

In spite of the sparse research data, especially in low- and middle-income countries, mapping of research priorities across diverse communities suggests that the condition has become one of the most urgent public health challenges (Khan et al., 2012). In industrialised economies like the UK the annual cost of autism is around £3 billion (Knapp et al., 2009).

Much of these social and ethical costs are due to limited uptake of evidence-based practice in the community, often complicating and delaying diagnosis and access to appropriate services several years beyond the point of initial parental concern. This situation is particularly problematic in view of growing consensus that early identification and intervention can improve long-term outcomes.

Central to meeting these global autism challenges is a life-course approach, whereby early identification and intervention are believed to prevent the long-term disabling consequences of autism for the affected individual, and to substantially reduce demands and costs to health and social care systems (Khan et al., 2012). In this article, I review recent advances in understanding the root causes of autism and its developmental pathways in childhood, clarifying how these advances provide impetus toward addressing long-term translational goals.

Indeed, these advances have already challenged and reshaped influential

Elsabbagh, M., Bedford, R., Senju, A. et al. (2013). What you see is what you get: Contextual modulation of face scanning in typical and atypical development. Social Cognitive and Affective Neuroscience, 9(4), 538–543.

Elsabbagh, M., Divan, G., Koh, Y.-J. et al.

(2012). Global prevalence of autism and other pervasive developmental disorders. Autism Research, 5(3), 160–179.

accounts of how and when the condition emerges early in life. In the 1970s, research into the genetic and neurobiological basis of autism led to the debunking of the myth that the condition is caused by so-called ‘refrigerator mothers’ who fail to show affection toward their children. Today, the field has moved away from ‘blaming’ mothers, instead stressing the critical role that families and supportive environments play in improving the lives of affected individuals.

Notwithstanding these accomplishments, there is increasing recognition of the complexity, heterogeneity and variable impact of autism across individuals. This challenge currently hampers basic clinical and translational research and complicates discovery of root causes. For this reason funders have increased investments to facilitate ‘big science’ – large-scale studies and data repositories. Indeed, the increased investments have allowed researchers to make leaps on the path of scientific discovery. Among the key advances are: I the discovery of rare genetic underpinnings in approximately 20 per cent of individuals with autism and those with overlapping conditions (e.g. Lionel et al., 2011; Scherer & Dawson, 2011); I increasing refinement in our understanding of atypical brain connectivity underlying the condition (e.g. Lewis & Elman, 2008); and I specification of variable rates of developmental progress within the autism spectrum, as they occur along distinct functional, cognitive and language dimensions, that are much broader than what narrow diagnostic categories capture (e.g. Georgiades et al., 2007).

These and other findings are gradually shifting the way scientists model the root causes of autism. We have abandoned a simplistic view of etiology where a single gene, brain region or neatly defined

Elsabbagh, M., Fernandes, J., Jane Webb, S. et al. (2013).

Disengagement of visual attention in infancy is associated with emerging autism in toddlerhood. Biological Psychiatry, 74(3), 189–194.

Elsabbagh, M., Gliga, T., Pickles, A. et al.

(2012). The development of face orienting mechanisms in infants atrisk for autism. Behavioural Brain Research.

doi:10.1016/j.bbr.2012.07.030 Elsabbagh, M. & Johnson, M.H. (2010).

Getting answers from babies about autism. Trends in Cognitive Sciences, 14(2), 81–87.

Elsabbagh, M., Mercure, E., Hudry, K. et al. (2012). Infant neural sensitivity to dynamic eye gaze is associated with later emerging autism. Current Biology, 22(4), 338–342.

Georgiades, S., Szatmari, P., Boyle, M. et

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which has in the last decade succeeded cluster of symptoms can account for in getting answers from babies about autism (Happé et al., 2006; Nickltheir development, cognition and Jockschat et al., 2012). Furthermore, communication. instead of defining the phenotype as Because autism is rarely diagnosed a narrow categorical disorder, there is before two years of age, several ongoing growing evidence around the classic large-scale studies have idea of a spectrum of been tracking the conditions affecting development of infants individuals differently; at-risk for autism, by some can lead independent virtue of having an and fulfilling lives, but older diagnosed many develop substantial sibling. These infants, cognitive, medical, relative to those with educational, functional no family history of and social difficulties that autism, are at have a serious negative substantially higher effect on their quality of risk for developing the life. Consistently, some condition as toddlers scientists suggest that these (Ozonoff et al., 2011). ‘autisms’ may well have As these independent distinct root causes, and large cohorts underlying biological advance along their processes, and developmental developmental pathways. trajectories, it is In sum, autism poses a becoming possible to complex scientific challenge prospectively account where heterogeneity in the for patterns of brain root causes or in the and behavioural resulting phenotype needs change. to be taken seriously.

It is becoming possible to Among these Therefore, it is paramount prospectively account for studies is the British to understand the emergence patterns of brain and Autism Study of Infant of the condition from the behavioural change Siblings (BASIS), which earliest stages, and prior to recently completed the onset of symptoms in follow-up of the first 100 infants from toddlerhood. It is within this early period around six months to three years of that we have a window of opportunity to age. About 30 per cent of these infants observe and study the unfolding neural received an autism diagnosis in and behavioural phenotype before it toddlerhood, and several others in the becomes complicated by atypical at-risk group exhibited various forms interactions within brain systems and of developmental concerns, such as with the environment. language delay or attentional difficulties, without meeting criteria for autism.

Babies debunk prevailing BASIS, in my view, complemented the growing body of literature in this area accounts in three unique ways. First, controlled Seeking to understand the complex laboratory experiments showed that, interplay between genes, phenotypes and contrary to prevalent theories in this area, environment, a rapidly growing area of those infants who went on to develop research falls at the crossroads of research autism as toddlers initially show many of on infancy and autism. This emerging the typical social responses expected for field draws on innovative basic science,

al. (2013). Investigating phenotypic heterogeneity in children with autism spectrum disorder. Journal of Child Psychology and Psychiatry, and Allied Disciplines, 54(2), 206–215.

Georgiades, S., Szatmari, P., Zwaigenbaum, L., et al (2007).

Structure of the autism symptom phenotype. Journal of the American Academy of Child & Adolescent Psychiatry, 46(2), 188–196.

Gotham, K., Pickles, A. & Lord, C. (2012).

Trajectories of autism severity in children using standardized ADOS scores. Pediatrics, 130(5), e1278–1284.

Green, J., Wan, M.W., Guiraud, J. et al.

(2013). Intervention for infants at risk of developing autism: A case series.

Journal of Autism and Developmental Disorders, 43(11), 2502–2514.

Happé, F., Ronald, A. & Plomin, R. (2006).

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their age. Second, direct measurement of brain activity signalled atypical neural processes preceding the emergence of overt behavioural signs of the condition.

Finally, the earliest manifestations of autism were detected across multiple social and non-social systems, rather than being restricted to precursors of the core social and communication symptoms that define the condition. A few illustrative findings reviewed next highlight the significance of these claims to the goal of understanding root causes in autism.

Influential hypotheses suggest that autism results from an initial lack of attention to or interest in socially relevant information. This initial impairment precludes later development of key social and communicative milestones, such as joint attention, and leads to the emergence of characteristic symptoms of autism. In contrast to these claims, several previously published studies with infants at risk (reviewed in Elsabbagh & Johnson, 2010) suggest that overt social and communicative behaviours may appear typical in this group within the first year of life. One limitation of these findings is that they come from observational studies or those employing unstructured settings, which potentially mask more subtle but reliable differences in infants who go on to develop autism.

In a series of highly controlled laboratory experiments with BASIS infants, we showed that seven-month-old infants at risk who later developed autism typically orient to faces embedded among distractors (Elsabbagh, Gliga, et al., 2012). The same infants reliably follow gaze of another person toward an object in the periphery (Bedford et al., 2012).

Moreover, they typically scan internal face features, including the eyes and mouth, when viewing dynamic faces displaying various communicative cues (Elsabbagh, Bedford, et al., 2013).

In contrast to these behavioural findings, direct measurement of brain response to socially relevant information within the same developmental period characterised the subgroup of infants who

Time to give up on a single explanation for autism. Nature Neuroscience, 9(10), 1218–1220.

Helt, M., Kelley, E., Kinsbourne, M. et al.

(2008). Can children with autism recover? If so, how? Neuropsychology Review, 18(4), 339–366.

Khan, N.Z., Gallo, L.A., Arghir, A. et al.

(2012). Autism and the grand challenges in global mental health.

Autism Research: Official Journal of

the International Society for Autism Research, 5(3), 156–159.

Knapp, M., Romeo, R. & Beecham, J. (2009). Economic cost of autism in the UK. Autism: The International Journal of Research and Practice, 13(3), 317–336.

Leonard, H.C., Elsabbagh, M. & Hill, E.L. (2014). Early and persistent motor difficulties in infants at-risk of developing autism spectrum

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areas like language developed autism as toddlers and attention in (Elsabbagh, Mercure, et al., toddlerhood, but 2012). Specifically, infants in without meeting the control group and those criteria for autism. at risk who did not develop This pattern, known autism showed clear as the broader autism differentiation between faces phenotype, has been looking directly at them vs. previously faces looking away, which documented in older we interpreted as an relatives of diagnosed understanding of the individuals (Pickles et referential nature of gaze cues al., 2000). Therefore, (a well-established precursor familial history of to joint attention). Yet, infants autism confers risk who went on to develop for variable pathways autism exhibited a diminished where an autism response difference to diagnosis is only one dynamic gaze cues (toward of the possible vs. away). Therefore, neural childhood outcomes. processes relevant for One of the reasons why autism signs in infancy are very difficult to Here too BASIS interpreting gaze cues are establish is because those at risk who do not develop autism share provided a unique already atypical, prior to the many of these signs with those who do perspective on these onset of overt signs of the variable developmental condition. systems and with the environment pathways. Preliminary findings suggest What happens after the first year? become compounded and amplified, that at least in some cases, the infant Dynamic developmental changes leading to characteristic symptoms that brain may respond to genetic risk by continue to unfold and more reliable define the disorder. Of course, these spontaneously reorganising in order to characteristics become increasingly clear findings hold in cases of familial risk, and prevent the onset of disabling symptoms in the second year of life in the infants different underlying risk process might be from emerging. Support for this claim is who later develop autism. In the BASIS found in cases where there is no familial based on findings where atypical cohort, these include atypical processing risk, a possibility yet to be explored. responses observed in a range of brainof social information (Bedford et al., function measures in the first year were 2012), delays in motor development not always driven by the subgroup who (Leonard et al., 2014) and decreased Rethinking developmental developed autism as toddlers (Elsabbagh, flexibility of visual attention (Elsabbagh, Mercure, et al., 2012). In fact, some Fernandes, et al., 2013). It is also in this pathways atypical responses were uniquely period that interactions between these The putative pathway of infants who later associated with the subgroup of infants infants with their caregivers become develop autism, described above, is only who did not develop any clinical increasingly asynchronous (Green et al., one among several hypothetical and outcomes in toddlerhood. Therefore, 2013; Wan et al., 2012). Still, signs at this observed pathways seen in these largeat least some infants may be actively age are variable across infants and only scale studies. A wide range of tasks responding to early genetic risk by indirectly map onto diagnosis at three revealed developmental differences in the recruiting alternative neural mechanisms, years of age. at-risk group as a whole relative to those a pattern described as ‘canalisation’.

In sum, contrary to previously with no family history of autism Therefore, this developmental approach proposed accounts, autism is not the (reviewed in Elsabbagh & Johnson, has further highlighted the variable and result of impairment in orienting or 2010). Indeed, one of the reasons why probabilistic nature of pathways leading sustaining attention to socially relevant autism signs in infancy are very difficult to autism. information. Infants who later develop to establish is because those at risk who The notion of dynamic developmental the condition initially exhibit a range of do not develop autism share many of pathways is not restricted to the early age-appropriate social and these signs with those who do. Moreover, infancy period, but is also neatly captured communication precursors, but over time infants who do not develop autism may by studies of young diagnosed children atypical interactions across multiple brain still exhibit developmental concerns in

disorder. European Journal of Developmental Psychology, 11, 18–35.

Lewis, J.D. & Elman, J.L. (2008). Growthrelated neural reorganization and the autism phenotype. Developmental Science, 11(1), 135–155.

Lionel, A.C., Crosbie, J., Barbosa, N. et al. (2011). Rare copy number variation discovery and crossdisorder comparisons identify risk genes for ADHD. Science

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Translational Medicine, 3(95), 95ra75.

Nickl-Jockschat, T., Habel, U., Michel, T. et al. (2012). Brain structure anomalies in autism spectrum disorder. Human Brain Mapping, 33(6), 1470–1489.

Ozonoff, S., Young, G.S., Carter, A. et al.

(2011). Recurrence risk for autism spectrum disorders. Pediatrics. doi:10.1542/peds.2010-2825 Pickles, A., Starr, E., Kazak, S. et al.

(2000). Variable expression of the autism broader phenotype. Journal of Child Psychology and Psychiatry, and Allied Disciplines, 41(4), 491–502.

Scherer, S.W. & Dawson, G. (2011). Risk factors for autism. Human Genetics, 130(1), 1–26.

Szatmari. P., Georgiades, S., Duku, E. et al. (in press). Developmental trajectories of symptom severity and adaptive functioning in an inception

cohort of preschool children with autism spectrum disorder. JAMA. Walsh, P., Elsabbagh, M., Bolton, P. & Singh, I. (2011). In search of biomarkers for autism. Nature Reviews Neuroscience, 12, 603–612.

Wan, M.W., Green, J., Elsabbagh, M. et al. (2012). Parent–infant interaction in infant siblings at risk of autism.

Research in Developmental Disabilities, 33(3), 924–932.

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who are followed up over time. For example, a large Canadian study (ASD: Pathways to Better Outcome) has been prospectively following 400 children from the time of diagnosis onward. Findings suggests that the architecture of autism symptoms differs significantly around the time of diagnosis (two to four years) vs. later at six years (Georgiades et al., 2013).

Observed differences between these two time points encompass differing levels of symptom severity, adaptive functioning skills and emotional/behavioural problems. Additional analysis of the same dataset also suggests that over time, subgroups of children take on distinct and increasingly divergent developmental pathways. Notably, a minority exhibit a clear reduction in symptom severity over time (Szatmari et al., in press).

Converging findings come from an American cohort of over 300 children followed from two to 15 years of age, highlighting that a minority of children improve over time (Gotham et al., 2012).

While there is general agreement across studies – despite variation in samples and analytic methodology – that some children improve over time, there is less consensus on whether this pattern signals ‘recovery’. One review suggested that 3–25 per cent of diagnosed children may eventually lose their diagnosis (Helt et al., 2008). However, major limitations need to be overcome before this claim is substantiated. First, there is disagreement on how to define recovery and whether it should be restricted to changes in autism symptoms, or inclusive of general cognitive and adaptive levels. Second, in many studies, it is not clear that children in this putative recovery group warranted a diagnosis in the first place, given wellknown instability of diagnosis early in childhood (especially for some forms of autism). Specifically, the group may include children who experience early developmental challenges that resemble autism but are resolved spontaneously over time. Third, current evidence draws on inadequate small samples often studied using retrospective designs or trials, rather than being prospectively followed for a long period of time. Finally, many factors have been proposed to explain putative recovery, including age of diagnosis, cognitive characteristics, access to treatment, and so on. However, there is currently no explicit theoretical proposal regarding the neural processes mediating recovery and those potentially influenced by the environment. Indeed, such processes may relate to the neural reorganisation suggested in the case of canalisation (Elsabbagh & Johnson, 2010).

In sum, there is growing consensus that autism is associated with a wide range of possible developmental pathways from infancy onward. Intermediate diagnostic outcomes in cases of familial risk are much broader than an autism diagnosis but encompass other developmental challenges and of course typical outcomes. Beyond the period of diagnosis, children progress along variable pathways of symptomatology, cognitive achievement and adaptive functioning. There is hope that pathways of canalisation and recovery may prove real, but evidence for such pathways is currently limited. More robust theoretical models are needed to generate testable hypotheses about factors promoting such pathways and the neural processes mediating them.

The ‘true’ value of understanding development Converging findings from various research areas support probabilistic and indirect mapping between genetic and/or environmental factors and developmental outcomes. Dynamic gene by environment interactions during the period of maximal brain plasticity lead to variable developmental pathways, not readily predicted by a simple model of risk. In some cases, early manifestations of risk, observed as differences in very early brain function, are compounded and amplified in leading to autism in toddlerhood. In other cases the infant brain may be resilient in the face of genetic and/or environmental risk, restoring the typical trajectory through processes of brain adaptation and plasticity. Later in life, seemingly divergent developmental pathways may share the same etiological pathway.

Turning back to the beginning of this article, how does this knowledge bring us closer to meeting the global challenges of autism (Khan et al., 2012)? It has been frequently suggested that the value of this research area is to identify warning signs and develop early therapeutic approaches.

As a result, our field is now hampered by several scientific and ethical controversies centred on the issues of When does autism begin? and Does it ever go away?

For example, there is a lively debate as to about a hypothetical behavioural or biological test that can be used in the doctor’s office to diagnose autism in infancy, and the related clinical and ethical issues that are yet to be resolved.

There is also disagreement as to whether laboratory measures such as EEG, MRI, and eye tracking, will eventually aid or replace behavioural diagnosis in

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childhood (Walsh et al., 2011). Moreover, the proposed case of ‘recovery’ in autism caused a backlash where scientists were accused of providing false hopes, when many in the community are advocating for the idea that autism is a lifelong condition that warrants acceptance and support.

In view of this, I would like to wrap up with three concrete proposals for where the ‘true’ value of the science lies.

First, ‘good science’ does not need to be justified and does not directly yield products other than knowledge. Its intrinsic value is to move us forward in an incremental, iterative and slow path.

In the case of research on infants at risk, I think it is remarkable that, in only a few years, we have already challenged fundamental assumptions about the origins of autism in infancy. While we can hope for breakthroughs along the scientific discovery path, any hype surrounding the possibility of immediate diagnostic tests will only serve to undermine true progress.

Second, formal translational research in this area has already started and is no longer a distant goal. For example, the success of experimental and clinical research in BASIS provided the necessary impetus and infrastructure to develop an integrated intervention research arm (iBASIS). The goal is to evaluate, using a randomised controlled trial, whether supporting parents within the early period may help prevent disabling consequences from emerging (Green et al., 2013).

Finally, there remains a very wide gap between, on the one hand, advances in scientific understanding of brain development and, on the other, the integration of this knowledge into policy and practice. In this vein, each community has its own immediate and pressing needs. Therefore, each community needs tailored solutions that not only build on existing evidence, but also harness their existing capacity and unique strengths (Elsabbagh, 2012; Khan et al., 2012). Scientists have played and continue to play a critical role in supporting communities to map research knowledge onto these needs and contribute towards development of tailored solutions bringing about immediate impact.

Mayada Elsabbagh is Assistant Professor, McGill University, Canada mayada.elsabbagh@ mcgill.ca

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BIG PICTURE

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Alien invasion Picture by William Tipple, with comment from Professor Uta Frith

William Tipple is a 15-year-old with autism.

This illustration, an entry to the Create Art for Autism People’s Choice Award 2014, is just one of thousands of variations on a theme.

William explains: ‘Alien Invasion 245 is a picture in Microsoft Paint. I really like using Paint. I have made lots and lots of Alien Invasion pictures, they are all different. I got the idea from Chicken Little which is one of my favourite films.’

Professor Uta Frith, the world-renowned expert in autism from University College London, says: ‘Alien invasion perfectly conveys the enthusiasm and fascination of a talented artist

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with autism, inspired by his special interest.

The art form he has chosen is digital realisation with vibrant colour that allows him to use both repetition and systematic variation to wonderful effect. It also reminds us that repetition is not the enemy of creativity but, on the contrary, is a technique explored by many great artists. Digital technology opens artistic possibilities to a wider range of individuals, including those whose fine motor skills might not suit pencil and brush. In such art, as in music, it is easy for neurotypical and autistic minds to find a

common space of appreciation and pleasure.’

Christian Lewis, Community Manager at The Abbey School, which William attends, comments: ‘Even in the recent past William would have been described as having typically autistic traits, but surely this cannot be his defining characteristic? He has those no more than we all have typically human traits.

‘William is William, a unique and creative individual in his own right. We are proud of William and his work, just as we are of all of our students, but far more importantly William is proud of his work too.’

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What is autism, anyway?

Eilidh Cage with the latest in our series for budding writers (see www.bps.org.uk/newvoices for more information)

Whereas young children and dogs attach themselves to a given caregiver, cats seem to be far more independent. With that in mind, perhaps people on the autistic spectrum are more like cats than dogs? As a cat owner, I know my pet loves me in her own way, but she interacts on her own terms, not mine.

Perhaps that’s what autistic people do too?

hese words come from some correspondence with one of my research participants, who has Asperger’s. What he highlights, to me, is the fact that we still don’t really know what autism is, despite decades of autism research. The fact that the criteria for diagnosing autism in the new version of the Diagnostic and Statistical Manual (DSM-5: American Psychiatric Association, 2013) re-categorises and redefines autism demonstrates this ensuing definition problem.

Many people will have had no experience of autism. Conversations about my PhD with others – the hairdresser, the dentist, people within academia but outside psychology – suggests that even if they have not met an autistic person, they may have a general idea of what autism might be. This is often the stereotyped view of autism, perpetuated by the oftcited film Rainman, and now by more modern fictional characters, such as Sheldon from The Big Bang Theory (although his diagnosis is not explicit, see http://bit.ly/145wz4w). Outside of the

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Bauminger, N. & Kasari, C. (2000).

Loneliness and friendship in highfunctioning children with autism.

Child Development, 71(2), 447–456.

Cage, E., Pellicano, E., Shah, P. & Bird, G. (2013). Reputation management: Evidence for ability but reduced

fictional world, autism can be found in documentaries, such as Channel 4’s The Undateables, to frequent stories in the news postulating potential causes of autism. It feels like autism is more in the public eye than ever before, and understandably, people may form ideas of what autism might be.

Yet, despite doing my PhD about autism, I often feel confused about what autism actually is. Every research article I read chants the same catchphrase: ‘Autism is a neurodevelopmental condition, characterised by social and communicative difficulties, and restricted and repetitive behaviours and interests’.

Although this wide definition does cover a general sense of autism, I don’t feel it quite captures how an autistic individual might describe what it’s like to have autism, or how a parent would describe their child with autism.

So who can tell us what autism is?

People with autism themselves are a natural place to start, and there are many eloquent examples. The well-known Temple Grandin (2006) has given us all an insight into her life, as well as others like Wendy Lawson (2000) and Donna Williams (1992). However, this may only give a view from the intellectually able end of the spectrum. Recently, author David Mitchell translated the memoirs of a non-verbal 13-year-old Japanese boy, Naoki, with severe autism, who originally wrote his memoirs by pointing to the letters on a piece of cardboard (Higashida et al., 2013). This account beautifully

propensity in autism. Autism Research, 6(5), 433–442.

Calder, L., Hill, V. & Pellicano, E. (2013).

‘Sometimes I want to play by myself’: Understanding what friendship means to children with autism in mainstream primary schools. Autism, 17(3), 296–316.

Frith, U. & Frith, C. (2011). Reputation management: In autism, generosity Is its own reward. Current Biology,

portrays how Naoki experiences the world around him. Every account is different, and highlights this diverse spectrum of individuals with autism.

When we read about autism research, though, how much of it tells us something about this spectrum? In psychology, we strive to match our groups – for example, you might match individuals on their age, gender and intelligence score, to ensure that any differences between your groups are not due to these variables. However, this matching process presents a problem – many autistic individuals inherently have language difficulties that will affect how they perform on tests of verbal ability, making it difficult to match them to those without autism. So the group of autistic individuals you often end up with constitutes a representation of those who have better verbal ability (e.g. Asperger’s and ‘high-functioning’ autism), surely limiting the picture of what we really know about autism as a highly heterogeneous condition.

The fact that autism forms such a wide-ranging spectrum may be part of the problem with deciding how we define autism. Yet, those who have developed typically show great variance in their personalities, likes and dislikes, and sociality. If we ‘neurotypicals’ (those who developed ‘normally’) can accept one another’s differences, can we not accept too that autistic individuals show great variation in their personalities, likes and dislikes, and sociality? For me, this acceptance is what we should strive towards, if we were to live in a perfect world. Through my research and volunteering experience I have met some of the most brilliant, honest, warmhearted children and adults – all with autism in varying severity. Surely autistic individuals deserve to have the right support and understanding to enable them to have fulfilled lives?

Perhaps psychological theory can tell us more about what autism is. Happé & Ronald (2008) argue that autism is ‘fractionable’ – that the three core

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Happé, F. & Ronald, A. (2008). ‘The Fractionable autism triad’.

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social reputation in autism.

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Lawson, W. (2000). Life behind glass: A personal account of autism spectrum disorder. London: Jessica Kingsley.

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difficulties in autism (social interaction, more money – and while autistic adults communication, and restricted and did change their behaviour slightly in this repetitive behaviours and interests) are situation, they did not change it as much separable, with different genes underlying as the typical participants, who gave the each, and each manifesting themselves person watching considerably more with varying severity. By this account, money. One possible reason autistic adults there is no single cause of autism, and changed their behaviour less could be each individual will have different degrees because they are less drawn to this need of each symptom. Another way of to manipulate. Such honesty in autism has encapsulating autism comes from been noted by many before (Frith & Christopher Gillberg, who claims that Frith, 2011), and perhaps we can learn a autism rarely exists on its own – it is few lessons from it. Why is it that typical almost always associated with other disorders, such as attention deficit hyperactivity disorder, specific language impairment, or obsessive compulsive disorder (http://bit.ly/1az08f2). He argues that we should not focus on ‘the autism’, but these comorbidities too, in order to gain a full understanding of each individual. Both of these accounts lend to an approach of considering the individual when it comes to autism.

In my own PhD research, the results of my first study with autistic adults were considerably more confusing than Are autistic adults less drawn to the need to manipulate anticipated, which may behaviours? in part have triggered my questioning of what autism really is. individuals often lie, manipulate and I came to the conclusion that it is not protect their own image? a simple case of autistic individuals One of the reasons many of us find completely lacking an ability to do one psychology so interesting is because we thing – rather, there are a number of don’t really understand why people do factors that reduce the likelihood that the things they do. This is probably why they show the ‘neurotypical’ behaviour. people with autism add in a whole new In other words, we shouldn’t immediately dimension of intrigue for researchers. assume that an autistic person cannot do However, this can sometimes come across something – rather there might be a as a search for ‘deficits’ and ‘disadvantages’ myriad of reasons why they don’t. For compared to typical people, with example, my research focuses on the fact discussions of ‘impairments’ and ‘failures’. that people change what they’re doing Although this is not intentionally harmful, when other people researchers should try to be careful with are around, probably so they can maintain their phrasing. a good reputation. Those with autism, When another psychology PhD however, don’t give more to charity when student asked what my research was in, they’re watched (unlike typical adults), I broadly told her ‘autism’. I was taken perhaps due to difficulties with thinking aback by her reply: ‘Ugh – autism. about what other people are thinking Everyone’s researching that. I’m so bored (Izuma et al., 2011). of autism’. Indeed, a lot of people do In my study (Cage et al., 2013) we research autism, but this is not without gave our participants a reason to change good reason. Autism has a real impact on their behaviour when watched – that the people’s lives, and its incredibly important person they were donating money to was research helps give those with autism the not only watching them donate, but she best chance at life. However, a recent would have the chance to donate to them survey of autism research in the UK from next. Here, you can essentially my research centre found that many manipulate another person to get some people with autism and their families

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report a discrepancy between what they want to be researched and what British researchers are actually researching (Pellicano et al., 2013). Autistic adults reported that they would be most interested to see research into how public services can best meet the needs of autistic people. Research by the National Autistic Society suggests that only 12 per cent of adults with autism are employed, even though many could do well working in a structured environment (http://bit.ly/1k6M8Pu). Why are so few employed? Imagine how it must feel to have autism in such a social world, where job applications so often specifically ask for ‘excellent interpersonal and communication skills’.

Yet autistic people are capable of being social, and evidence suggests that many do want to have friends, even if they may find it difficult to make them (Bauminger & Kasari, 2000). On the other hand, some individuals with autism just want to be alone (Calder et al., 2013). Understanding more about autism could help autistic individuals to gain and hold down full-time employment.

We can all do our bit in accepting autistic individuals and understanding the struggles that families may face, even if we don’t know exactly what autism is right now. We can do this by a number of means. As researchers, perhaps thinking of ways of engaging – for example, forums where voices can be heard and listened to – is one way of guiding research towards important issues that autistic individuals and their families feel need to be addressed. Autistic voices are just as interesting as autistic brains. There should also perhaps be more dialogue between clinicians, teachers and academics so that we are all on the same page before we listen. The next generation of autism researchers (myself included), also need to be aware of the ethical issues linked to autism research, so that we produce the best possible research.

So what is autism? Autism could not be what we think it is. Autism is something we’ll probably never all agree about. Autism is not just found in children. Autism is close to many people’s hearts. Maybe, people with autism are a bit like cats.

Eilidh Cage is a PhD student at the Centre for Research in Autism and Education (CRAE), Institute of Education, University of London e.cage@ioe.ac.uk

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A creative, interpersonal, social scientist Editor Jon Sutton meets Professor Francesca Happé to talk about autism, DSM-5, women in science, and more

ou were on the neurodevelopmental disorders work group for the latest Y revision of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5).

How have you found that?

It’s been an experience, for sure! It led me to think of lots of questions about autism that I hadn’t before, like is autism a lifelong condition? To ask all those kinds of questions, counter to the things that I had grown up being taught. It was challenging, because particularly in the States the health system is so different that it has implications in terms of money for patients that are completely alien to anything we would know here.

So that makes it even more of a political issue for the work group?

Yes. I don’t feel jaundiced by it, because the people on the panel all had the best intentions, and it wasn’t a matter of the loudest voice winning, which I thought it might be. It was genuinely collaborative and positive in its aims. Of course it’s worrying to change anything, and the fear of doing harm is real. But I think there are good reasons for the changes made.

Professor Francesca Happé is Director of the MRC Social, Genetic and Developmental Psychiatry Centre at the Institute of Psychiatry francesca.happe@kcl.ac.uk

Just talk me through them. DSM-5 overall treats things as more dimensional, and in autism it’s a collapsing of several categories into autism spectrum disorder?

Yes. We were told that for the whole of DSM-5 we should recognise that things are typically dimensional, and that there should be more specification and description of the individual. So across

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categories, things like adverse living circumstances and additional mental health difficulties should be specified and considered, all of which I think is really positive.

When it came to autism, and notably Asperger syndrome, although everyone said ‘oh, I know what Asperger syndrome is’, they were all using it slightly differently. First of all we thought ‘can we put a sticking plaster on DSM-IV?’, and tinker with the criteria so that they do work. But doing that would effectively say

that Asperger syndrome is autism without a language problem and without intellectual deficits. But since autism isn’t defined by a language problem or intellectual deficits, that doesn’t really make sense.

So it ended up that the evidence was that clinicians are really good at telling

what’s on the autism spectrum vs. what’s not, but they’re really bad at agreeing with each other about how you cut it up into these artificial categories of Asperger’s, PDD-NOS, autism…

So it can end up depending more on what clinic you go to?

Exactly. And we know that naturalistically some children start off ‘Kanner type’, very classically autistic, and by adolescence they look ‘Asperger’s’. In some sense Asperger syndrome is a really useful exemplar-based definition, you’ve got in mind a prototypical person with Asperger syndrome and then a fuzzy set around that. People will still use Asperger’s as a descriptive, but it doesn’t work as a diagnostic category because it doesn’t have any clear boundaries or anything that qualitatively distinguishes it from autism.

So the idea is instead to have a big category, then within that the individual is described, the clinician needs to say what their level of language functioning is, what their intellectual functioning is, did they have an unusual onset. The individual gets better described, you’re not trying to shove people into slots they don’t really fit into. Because also, although I’m not a clinician, the experience I have in clinical settings is that people are saying ‘well, he doesn’t really fit Asperger’s, but it’s the nearest we can get’, or ‘it will get him the services that he needs’.

And that seems to be in accord with what critics of DSM have been asking – that social circumstances are taken into account, that things are considered on a spectrum. But how in line with the research can all this be, when it seems to me there’s so little agreement, even amongst top autism researchers, in terms of causes?

At the beginning of the DSM-5 process, they asked everyone to consider whether neurobiological information, including genetics and anything you can think of on the biological side, could be used to aid diagnosis in any of these conditions, and the resounding answer was no, or at least ‘not yet’.

Which I find surprising, given that every study that you see on the biological side, even if it isn’t directly related to autism, tends to be press released with the line ‘this may be of use in the early diagnosis of autism’.

It’s a stock thing that’s trotted out, as if that's the great hope. You don’t see that coming, you don't even see that as the holy grail?

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happens when people with autism No. The sense that getting hold of the grow up? genes, or knowing exactly which part Yes, and in fact that grew out of the DSMof the brain is abnormal in autism, that 5. We were encouraged to think about that’s the holy grail itself… I think that’s the presentation of conditions in different the view more in America than here, cultures, in both genders and across the that the biology is the be all and end all. lifespan. I thought ‘that’s interesting, I think that’s a very limited view, and I don’t know anything about autism in everything we know about genetics old age, I’ll go and look that up’. And suggests that knowing your genetic there was nothing, I mean there was just profile will only map fairly loosely nothing! Not even, onto your behavioural say, documentation profile. So you never want of whether people to replace face-to-face “in old age we might be with autism have diagnostics, which is about more heart the need that someone has, able to do even more… to problems in old with some kind of read-out improve quality of life” age. That seemed to of their genetic or neural me such a striking gap. make up, because you will Of course when you get mismatch. You’re bound stop and think about it there are good to have, say, fathers of children with reasons why there would be a gap there, autism who have much the same genetic to do with autism being a relatively new or neural read-out but aren’t affected and diagnosis, and the criteria having certainly aren’t impaired. broadened, so the people we recognise I’m much more interested in how now are different from the people we people with autism understand the world, used to recognise, but still it’s a that’s much more useful. The issue about tremendous gap. And it’s been really whether earlier and earlier diagnosis is disappointing to me that the people the most important thing is also a bit of who usually fund our work on autism a red herring. People rarely discuss the in children have not been as enthusiastic cost of false positive diagnosis, and there about funding our work on autism in is a real cost. If you talk to some parents old age. who have had that happen to them, where for example a language impairment Why is that, children are just more has been misdiagnosed as autism, they’re appealing when it comes to research actually very cross and very upset. The funding in general? whole idea that we have to make I don’t know, maybe I just wrote bad diagnosis earlier and earlier is predicated grants! But it does make you wonder, on the idea that the earlier you intervene perhaps that’s the corollary of the early the better, and while that may be true for intervention banner – ‘if you miss that some things it’s simplistic. There may be boat, it’s too late’. I think in old age we a window of opportunity at a particular might be able to do even more for people, stage, and it may not be right at the to improve their quality of life. Temple beginning. The work of Mark Johnson is Grandin says that her brain switched on really interesting, with the infant sibs who at 50. So it may be that there are fantastic are genetically at risk of autism, showing opportunities later in life. that there are markers early on, not so much behaviourally but in terms of eventThere seems to be a strange kind of related potential, for example, which are mystery around autism in children, common to sibs of kids with autism who where you have this unreachable child do and who do not turn out later to have and that presents a challenge to autism. So the earlier the signs we look scientists and the public in general. at, the more non-specific they will be.

Whereas maybe with an adult with That work could be really important, if autism the general feeling might be it teaches us what determines who ‘that’s just some weird old guy, that’s transitions off an autistic pathway. But the way he is, we’re never going to get I’m not so excited by chasing earlier and through to him’. It just seems to me earlier diagnosis, unless we know what that autism is perpetually fascinating we are going to do with that information, in the public eye as well as the what we can do for that child and family. scientific eye… I think you could argue that it’s quite overrepresented.

You mention the autistic pathway…

It is. I think if I were the parent of a taking that lifespan approach seems child with intellectual disability of the to be quite unusual in developmental ‘ordinary’, unlabelled sort, I’d be jolly psychology and in autism in particular. cross how much money autism research It’s very much focused on autism in gets, and how much press it gets. It is children, but you’re interested in what

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disproportionate. And it is because it’s fascinating. You’re right, there’s this stereotype of the beautiful, unreachable child with autism, with the faraway look.

But what about the old guy with autism, with the faraway look? He’s just as beautiful. It’s part of our cultural lack of respect for the elderly too… they’re already a disliked minority, add autism to that, these poor people have got no one to fight for them.

You’ve talked about the ‘beautiful otherness’ of the autistic mind, and again a lot of the coverage of autism you see in the press and on TV is very much about the fascination of the high end of the autism spectrum. But the parent of a child at the low end, who is rocking, biting, non-communicative... would they identify with the ‘beautiful otherness’ of the autistic mind?

When I started with Uta Frith’s ideas of assets in autism, looking at what people with autism are good at, trying to think of tasks that children who are non-verbal can access, like embedded figures and block design, self-explanatory visual tasks, I did worry that if I was talking about assets in autism that would be seen as wishing away all the problems. But the response from families has been really positive, they’re really pleased to hear people talking about things that people with autism are good at, even if there’s plenty they struggle with.

The thing is to have a broad recognition of what those sorts of skills and talents are. They’re not always the mathematician at Cambridge, they can be the child who amazes their parents because they get upset about tiny changes in their environment, an ornament moved a fraction of an inch, or who shows that they remember somewhere they’ve been before by going straight to a particular location. Parents are really aware that pretty much every individual with autism is surprisingly good at something, compared with their other abilities, and like us as parents of neurotypical kids, we’re kind of pleased and intrigued by that, but it doesn’t mean we don’t recognise that our children find other things difficult.

You want to focus on the positives.

Yes, and it’s delightful when your child surprises you by how different they are from you. So I think it is really important to recognise, particularly when you’re talking about talents, that it is infuriating for parents when a well-meaning neighbour says ‘Oh, I hear your child’s autistic, what’s his talent?’, and they want to say ‘Well, his talent is lying down in

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the supermarket and screaming and screaming because the fluorescent lights are upsetting him’. But if you talk about it in another way, they often will say ‘I do realise his world is utterly different, and there are some things about how he sees the world that are really extraordinary, and opened my eyes’.

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autism

And you believe that all people with autism have the potential to develop those skills to the level you would call savant ability?

I don’t know. I think there’s a lot of untapped ability. I think people with autism all have something that would stand out against their other background of skills that’s unusual.

Pam Heaton’s work suggests that a large number of musically untrained people with autism have the potential to develop perfect pitch, and that is a real starting point for developing musical skills. It’s important that we don’t somehow prize some things or value the individual because they’re good at certain things. If one’s interested in talents in autism it’s because those are ways that the individual can find more of a niche or be more integrated into society to the extent that they want to be, that give them pleasure, that help neurotypicals to understand that People with autism all have something that person… It’s not that it gives the person would stand out against their other background more value; the child whose talent is of skills that’s unusual watching drops of water drip from their type 1’ and ‘autism type 2’, or something fingers for hours on end, seeing the where we can link it to particular minute differences between them, has aetiologies that have particular absolutely inherently as much value, consequences for prognosis or treatment. whether or not they then go on to But we’re a long way from that. So the develop beautiful drawings or something. heterogeneity that I’ve been interested in So it is a difficult area, but I think we are is the idea that there are different causes shortchanging people with autism if we for the different parts of what we call don’t recognise that there is potential autism, so for the social and the there that’s hard for neurotypicals to communication and for the non-social recognise because they don’t show it aspects. And that is debated. So we talk in the ordinary way due to their social about an autism spectrum, and some difficulties. people like John Constantino would say ‘yes, there’s one dimension: you're a bit Coming back to this disagreement autistic, you’re a bit more autistic, you’re between autism researchers… If really autistic’. Whereas I would sketch it autism is increasingly being treated in a multidimensional space, where how as dimensional, and there’s a lot of much social and communication difficulty debate around whether the triad of you have is pretty much independent of impairments is ‘coherent’, genetically, how rigid or repetitive you are, which are cognitively and neurally, does it still again independent of how your make sense to think of autism as a intellectual functioning is and how your unitary concept at all? language is. But I don’t think that’s the People increasingly talk about ‘the same as ‘there’s no such thing as autism’. autisms’, because autism is so heterogeneous. I think it’s probably pretty Until we get to the stage where there’s certain that there are going to be lots of autism 1, autism 2, autism 3, and different causes in different individuals. they’re shown to be so different as to In the future we might talk about ‘autism

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not all be autism, you’re happy carry on down the road of autism research?

One of the things that people have thought about this ‘fractionated triad’ idea is that it means there’s no such thing as autism; there’s just the unlucky coincidence of these different difficulties or cognitive styles, and when they come together we call it autism. I don’t really mean that, because there is something about getting that particular set of difficulties that has a catalytic effect that qualitatively changes them. So if you just have social and communication difficulties, but you don’t have an extraordinary eye for detail and a sort of rigidity perhaps due to executive problems, you can compensate for some of your social and communication problems in such a way that they will look different. When you get the particular mix that is autism all together, you get something that qualitatively looks different so that that really is autism. And autism is incredibly easy to recognise in its core form. And even when I talk about type 1 and type 2 and the idea that at some point the different aetiologies might be useful to us, it could be that at the behavioural level all those aetiological subtypes look identical. So people quite often ask me if I think that everyone’s a bit autistic, and it depends what level you’re looking at. Behaviourally, you can certainly put everything on a continuum and it’s all shades of grey, and you make your clinical cut off where somebody is impaired and asking for help. You don’t just go out and start Asperger spotting.

So just because I put my CDs in alphabetical order…

Exactly. Or I hate all this, ‘Einstein…’ …historical diagnosis?

Yes. So that’s at the behavioural level, it all merges together difficulty keeping conversations going, small talk and all the rest. At the cognitive level I think it’s more complicated, so problems in theory of mind, and representing others’ mental states, probably is a qualitative difference.

Most neurotypicals can do this, and most people with autism can’t, at least initially – they may find ways later in life to do it.

That’s a real big difference, not shades at all. But then the eye for detail, we hypothesise very much on a continuum, and you see it in the relatives of people with autism, that don’t have any difficulties, and so on.

Then aetiologically, who knows? It could be that it’s like high blood pressure and it’s a continuum and then you pass a threshold and it’s a problem, and it really begins to show behaviourally. Or it could

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be that it’s like the rare mutations, genetically, something really special.

Still so much to do, then! What are your main research priorities at the moment, what are the most promising directions?

I’d like to do something on ageing and autism just because it’s so important. I’d like to see if we can turn our ideas about detail focus into educational interventions. We think at the moment it’s rather separable – how good you are at details, and how difficult you find it to put information together to get the big picture, are different dimensions. That encourages us to think that we can improve the ability of people with autism to see the big picture when they need to, without taking away their eye for detail.

We want to develop interventions to help, for example, kids to learn that some problems are ‘zoom out’ problems and others are ‘zoom in’, if you take a video analogy.

We’ve been doing some work with girls, trying to understand whether some of the difference in the gender ratio is us missing girls with autism, or that girls genuinely compensate better. And then the fractionated triad work has led us to realise that there are quite a lot of kids out there in the population who only have one aspect of autism; they might just have rigid and repetitive behaviour, they might just have communication problems, or they might just have social problems, and I really want to know what those kids are like. Parents rate their difficulties as just as severe as those who have the full triad of autism – how impairing are they? Are they getting any diagnosis, do they need help, or actually when you don’t strip away compensation routes, can they manage all right?

Well that should keep you busy! And as if that wasn’t enough, I know other areas are important to you, such as being a female scientist.

Yes. I was lucky to get the Royal Society’s Rosalind Franklin Award in 2011, and that was for a project that’s still ongoing to create some books for primary school children called ‘My Mum’s a Scientist’.

This came about because I was in the playground dropping off my own children and a friend of my daughter came up and said, in front of me, ‘Is your mum a scientist?’, and my daughter said ‘Yes’, and he said ‘Wow!’ and he was really amazed.

And I found that so interesting and funny, it was as if he’d asked whether I was an astronaut or something really exciting!

That set me thinking about what kids know about what it is to be a scientist.

So I’m trying to produce these books based on real women scientists, teaching a bit about the science but also about what it means to be a scientist.

Recently I was asked to give a lecture in Cambridge about women in science, so I’ve started to do some thinking about where young children get ideas about science and scientists, and why it is that – at least in America and Britain, although it’s very different in different cultures – children aged seven are already saying ‘maths is for boys’, even though at that age there’s absolutely no sex difference in achievement? Similarly, girls are saying in some big surveys ‘I like science, but I can’t imagine being a scientist’. What is it that they think a scientist is, that they can’t identify with?

So there’s a really interesting story to be told there. The story that I’m interested in telling, because it relates to social intelligence and social insight, has to do with conformity and the way that unlike people with autism, neurotypicals from very early on not only can read minds but they can’t help but read minds. So there’s an obligatory osmosis of other people’s attitudes and views.

Resources Papers Happé, F. & Frith, U. (2014). Annual Research Review: Towards a developmental neuroscience of atypical social cognition. Journal of Child Psychology and Psychiatry, 55, 553–577.

Robinson, E.B., Lichtenstein, P., Anckarsäter, H., Happé, F. & Ronald, A. (2013). Examining and interpreting the female protective effect against autistic behavior.

Proceedings of the National Academy of Sciences USA, 110, 5258–5262.

Dworzynski, K., Ronald, A., Bolton, P. & Happé, F. (2012).

How different are girls and boys above and below the diagnostic threshold for autism spectrum disorders?

Journal of the American Academy of Child and Adolescent Psychiatry, 51, 788–797.

Happé, F. & Charlton, R.A. (2012). Aging in autism spectrum disorders: A mini-review. Gerontology, 58, 70–78.

Happé, F. (2011). Criteria, categories and continua: Autism and related disorders in DSM-5. Journal of the American Academy of Child and Adolescent Psychiatry, 50, 540–542.

Books Happé, F. (1994). Autism: An introduction to psychological theory. Psychology Press.

Happé, F. & Frith, U. (Eds.) (2010). Autism and talent.

Oxford: Oxford University Press.

Other recommended resources The latest edition of the IACAPAP Textbook of Child and Adolescent Mental Health is free online at tinyurl.com/nte3tj7 and has an excellent chapter on ASD (with links to video materials) The National Autistic Society has a variety of resources on ageing and autism: tinyurl.com/m7hu4f5

That’s interesting, because my perception of a lot of your peers and mentors is that you’ve been embedded within really formidable, socially intelligent, socially supportive network of female scientists.

I’ve been incredibly lucky, to have Uta [Frith] as a fantastic supervisor and mentor, and many other really wonderful women scientists, and wonderful male scientists who’ve been very promoting of women. But it’s still shocking, maybe you experience it too as a parent, young kids in primary school will somehow form the assumption that nurses are women and doctors are men. So the base rate of assumptions about what girls are good at and not good at is still very biased against science. There are kids and older adults who are good at being different and don’t mind being different, but for the ones who do want to be like others, which is the majority because of social osmosis, we

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have to give them role models of scientists so they can think ‘yes, I want to be like that’.

And to be like that in terms of an approach to life as well, like you were saying about ‘zoom out’ and ‘zoom in’ on problems. I’ve found with my own children, trying to pass on that scientific way of thinking, regardless of trying to pass on the idea of being a scientist as a career move… I think children respond to the idea of looking for evidence and solving mysteries.

Absolutely. But I think science is just taught in entirely the wrong way. We’re training people to memorise facts, and conduct experiments that are like recipes where they can go wrong and you've failed. We don’t convey that science is creative, interpersonal, that actually social skills matter, that it’s about discovery…

I think we need to change a lot.

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filled some people with horror. In the modern world, comedy is often seen as cruel, that there must be a target or a figure of ridicule in it all. For example, last year I was invited on to the Radio 4 Today programme to talk about ‘comedy and dark subjects’. And on the telephone the young researcher eagerly asked me, ‘What’s the most offensive joke you tell John Williams on being a parent of ‘The Boy’ with autism about your son on stage?’ It genuinely took me aback, that someone honestly thought I was going to stand up in front of a roomful of people and ridicule my own child in some way. accompanying blog of our life together.

So if there is a target in the show, then ’m a comedian. I’ve stood backstage I called them ‘My Son’s Not Rainman’; just it’s other people’s perceptions of The Boy at a comedy club on a Friday night to try and dispel the myth that everyone and those like him. There is joy in our hearing the noise of the baying crowd with autism is some kind of a genius in world, that’s all our story is about. And the other side of the curtain, knowing full from joy comes laughter. well I’m about to be fed to the lions.

Nobody will ever make me Yet even when I look back at those laugh more than him – he’s moments, none of them seem as made me look at the world daunting as writing an article about differently, he’s made me autism for a professional magazine. question so many thing You see, I’m no academic. And I took for granted, and I’m certainly no expert. My above all else he’s made me knowledge doesn’t come through realise that socks are just books or studying, it simply comes a weird bit of material that from living with one boy. My boy. you don’t really need. What And I suppose over the 12 years he’s isn’t there to be grateful for? been on this planet if I’ve become an I didn’t always see the expert on anything, it’s an expert on positive in our situation, him. Just him. I’ve watched his it’s fair to say. For so many continuous struggle to adapt and years it just felt like the make himself heard in a world that never-ending battle I neither of us will ever truly described earlier. It was understand. forever about getting him The truth is, autism to the two of the right level of support. us has in many ways felt like a battle.

Or any level of support. For Just a long, laborious fight, both in us, the diagnosis of autism the physical and non-physical sense. closed doors rather than From a very young age The Boy opened them. ‘It’s because (as I refer to him, just to save his he’s autistic’ became the blushes) learnt that if you want answer to most concerns Shane’s toy car, but Shane won’t give raised, and now the medical you his toy car, and you can’t find the community had a label its words to be able to ask Shane for his work was done. toy car, then a short sharp bite to For parents the Shane’s arm will get you that toy car. frustration that schools And if a quick bite doesn’t do it, a and healthcare work so push or pull will. The Boy has used independently of each other this knowledge in too-many-to-count I John Williams is a professional comedian and single dad can’t be overstated. Here was clubs, care settings and even schools. john@mysonsnotrainman.com a boy deemed ‘unteachable’, And that’s why I decided to tell excluded from two mainstream schools some way. Wonderful though these our story. Because his life was forever and a special school. Headteachers, skills are, The Boy has never sketched shaped by his behaviours, and very few educational psychologists, speech and the London skyline from memory or people could see past them. But I didn’t language therapists – they all memorised every bus route between want his behaviour to define him. He’s recommended CAMHS referrals. Yet still Harlow and Portsmouth since 1904. so much more than that. The Boy who years on we have moved no further up He prefers the company of others, has I laughed uproariously with at home, the elusive CAMHS waiting list. Apart no real interest in trains and his worst he was lost to the world at large. And from one meeting to assess his suitability subject is maths. His greatest ‘skill’, if he the relatively few people in his life who for medication, The Boy hasn’t been seen has one, is just being him. have taken the time to look a little deeper by a medical professional with regard to There have been a few hurdles to have been rewarded with an amazing, his autism since he was diagnosed so overcome with the show and the blog fun, witty, charismatic boy just waiting many years ago. that I hadn’t foreseen. The idea of using to shine.

That’s the parental-moan-bit over comedy and humour to tell our story So I wrote a comedy show and an

My son’s not Rainman

I

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with. Apologies, it comes with the territory. I’m not even sure what it is I want that would make everything better – I’m not naive enough to believe that it will all go away one day. I suppose much of the concern is based on fear – we forever hear the horror stories of adult services, so for parents we think we have to cram everything in before they turn 18, because after that there’s nothing.

If I had a wish list, I would love to see a system where children are reassessed every five or ten years. The difference in The Boy and his peers as they age is fascinating – some making great strides, others far less so. Especially given that children are diagnosed even earlier nowadays, some reassessment at a later period in their lives would at least offer a glimpse into how the condition changes. And it may provide an answer why some do better than others.

Now I’m in the middle of my utopian dream, I’ll carry on. Without being too altruistic, it would be good to see more support for parents too. The years of school exclusions, running the gamut of other parents in the playground every morning, the family members who even question you – it all takes its toll. I know what a pain in the backside parents can appear at times, but it’s because everything is a fight. And at any point we expect the door to be slammed in our face again so we have to get in quickly before that happens. And, sadly, parents quickly learn that the system is now very much geared towards ‘those who shout the loudest’ rather than assessed on need.

That’s it with the ranting and moaning now, I promise. For the most part, life is good. The Boy is settled in his latest special school, and they seem to understand him more than anyone has before. He’s getting older, and as a result I never have to sit through another episode of Ben 10 in my life. The Rugrats will remain a work-in-progress.

The last few years have been a steep learning curve, not just for him, but also for me. I have finally learnt that a positive outlook can make all the difference to both our lives. I spent so long trying to find out what was wrong with him, I forgot to look for what was right. He will forever be the person who has taught me more about what it means to be alive than anyone else ever could. He’s made me question the human condition, make me realise that the lack of empathy and understanding often doesn’t come from within the autistic community but outside it. And above all else, he’s made me realise that in the darkest moments, there’s nothing a multipack of barbecue flavour Hula Hoops can’t make better.

Driving Miss Daisy The Boy has been travelling independently to school for a few weeks now. I was going to tell you about it earlier, but once again the fear I might jinx something that seemed to be going so well meant I left it for a little while, just to be certain.

I say travelling independently, he goes in a taxi. With an escort. But it’s as independent as life will be for the moment, and he seems to love it. Mainly because apparently the car is better than mine. And although I miss our chats on the drive to school, I love this new found independence too. It’s another opportunity for him to break away and be his own person without awkward, stupid Dad always stepping in and controlling things, even if it is with the best of intentions.

He travels each day with another lad from school, The Boy Who Always Carries His Teddy, the taxi driver and the escort (in keeping with the rest of this blog I was going to call her Mrs Escort, but that just seems wrong on so many levels... we’ll settle for Mrs T). Each Monday follows the same routine, the week starts with The Boy and The Boy Who Always Carries His

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Teddy sitting together on the back seat, with Mrs T and the driver in the front.

By Tuesday morning they’ve been separated and The Boy sits in the front seat. (I don’t ask the reason why any more, I’ve decided I’m better off not knowing some things).

Each afternoon when the taxi pulls up at the door to drop him off I hear The Boy and Mrs T chatting away together on the doorstep.

Laughing. I know he likes her, and the bit that makes me happiest, it’s very obvious that she likes him.

As I open the door I’ll interrupt their conversation mid-flow. The Boy will stop talking instantly, and I’m left feeling like I’ve gatecrashed the world’s greatest party.

Whatever they were talking about is of no concern to my prying ears. They can pick up where they left off again tomorrow. He’ll say goodbye to Mrs T and step inside.

Her name will pop up now and then, but The Boy keeps their conversations to himself. And although it’s taken some getting used to, I like it. I like that he’s taking more and more steps towards a life outside me.

I like that there are things going on in his world that

I know nothing about. Like the time last year he came home from school and suddenly declared he liked football and supported Arsenal, despite showing no interest whatsoever at home. Sometimes as parents I suppose letting go can be as important as holding on.

I did get one little glimpse into his new life. At Christmas, he got out of the taxi with a present from Mrs T. I could tell by the shape it was an annual. I guessed at Doctor Who or Minecraft, thinking that I’d suddenly discovered the topic of their conversations all this time.

Of course I was wrong.

He opened it, it was a football annual. Manchester United.

‘Yessss!!!!’, The Boy shouted. ‘I thought you supported Arsenal?’, I said confused. ‘I do’, he replied with a heavy sigh, feeling the burden at having to once more explain everything to someone so stupid.

‘I support Arsenal at school... I support Man United on the way to school’. © John Williams 2014 First published as a blog post at www.mysonsnotrainman.com/blog Reproduced here with permission.

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EYE ON FICTION

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Generic images of autism Douwe Draaisma on stereotypes in novels, films and real life

n 1877 prison authorities called on Francis Galton with a pressing question. Could it be the case that certain types of crimes correlated with particular facial characteristics? They presented him with a large number of photos of delinquents and Galton set out to arrange them in an effort to find natural classes of faces connected with crimes like murder, fraud and forgery.

The request led to a wonderful invention: by superimposing photographs Galton produced what he called a ‘pictorial average’ of their faces (Galton, 1879).

The first demonstration of composite portraiture caused a flurry of applications.

Its use as a method for identifying typical murderers’ or fraudsters’ faces, though, was ill-fated. The individual faces were villainous enough, Galton reported, but they were villainous in too many different ways. As an instrument in criminal anthropology, ‘pictorial statistics’ was a failure. But Galton did notice the potential of his technique as an analogy for the way the human brain generalises from individual sense impressions to more abstract, ‘generic images’. By watching a series of individual dogs, he argued, we let their similarities blend into a prototypical dog. What is peculiar to only a couple of dogs will have disappeared from our composite representation of dogs in general.

Viennese paediatrician Hans Asperger (1906–1980) never mentioned composite photography. He was raised in an entirely different scientific tradition, infused with

references

I

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Asperger, H. (1944). Die ‘autistische Psychopathen’ im Kindesalter. Archiv für Psychiatrie und Nervenkrankheiten, 117, 76–136.

Burks-Abbott, G. (2008). Mark Haddon’s popularity and other curious incidents in my life as an autistic. In M. Osteen (Ed.) Autism and representation (pp.289–296). New York/London: Taylor & Francis.

Draaisma, D. (2010). Stereotypes of

Gestalt psychology. Yet, his account of the way a diagnostician intuitively learns to classify and label his patients is curiously reminiscent of Galton’s prototypes emerging from individual impressions.

This was especially true of the category of what Asperger called ‘autistic psychopathy’ – today’s Asperger’s

The account of the autistic experience in successful fiction must be a major force in shaping lay understandings of autism

syndrome. Cumulating experience with clinical observation, he wrote, allows one to recognise the disorder at first glance, even before the child begins to speak (Asperger, 1944). An accomplished diagnostician discards the particular and accidental, and sees the Gestalt of the condition.

Empirical research on the development of prototypes, stereotypes and exemplars has bolstered much of what Galton and Asperger hypothesised.

But modern studies of categorisation have gone beyond perceptual processes and

autism. In F. Happé & U. Frith (Eds.) Autism and talent (pp.209–217).

Oxford: Oxford University Press.

Galton, F. (1879). On generic images.

Proceedings of the Royal Institution, 9, 161–170.

Hacking, I. (2007). Kinds of people: Moving targets. Proceedings of the British Academy, 151, 285–318.

Haddon, M. (2003). The curious incident of the dog in the night-time. London:

diagnostic practices. Generalised representations and stereotypes are shown to reign in many domains, often implicitly; they steer the way we think about gender, age, class, ethnicity, sexual orientation, politics – and autism.

In his book Send in the Idiots: Stories from the Other Side of Autism, Kamran Nazeer (2006) recalls his meeting with André, a former classmate in a special school for autistic children: I know computer scientists who do their programming from inside tubes made out of tin foil, who obviously wear pants with embarrassing holes in them, who devote their livingrooms to experiments in supercooling processor chips, or who can recite Ovid’s Metamorphoses backwards,

and then finishes off with: ‘and none of them are autistic.’ Only if these last few words held no surprise at all to you, you may consider yourself to be free from stereotypical views on autism, or, more probably, you have never cared much for the literature on autism.

Thinking in stereotypes has a moral connotation to it. We don’t like to be caught at it. It is associated with sloppy thinking, prejudice, intellectual laziness.

At the same time, the combination of computer science and eccentricities almost irresistibly conjures up the image of an intensely nerdy, socially odd person, arguably one of the most forceful presentday stereotypes of autism. It is an image fed by CSI-like TV series, novels, talk shows, documentaries, movies like Mozart and the Whale (2005) or Snow Cake (2006), autobiographies such as those by Daniel Tammet and Temple Grandin, public controversies like the one on computer hacker Gary McKinnon, and a host of other stages where autistics, real or fictionalised, have made their appearance.

At this point one may ask whether we shouldn’t draw a few lines. After all, autism is a psychiatric category. Shouldn’t we leave matters of diagnosis and

Jonathan Cape.

Howlin, P., Baron-Cohen, S. & Hadwin, J. (1999). Teaching children with autism to mind-read. Chichester: Wiley.

Murray, S. (2008). Representing autism: Culture, narrative, fascination.

Liverpool: Liverpool University Press.

Nazeer, K. (2006). Send in the idiots.

London: Bloomsbury.

Simsion, G. (2013). The Rosie Project.

London: Michael Joseph.

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of focus and dedication. Lack of categorisation to specialists? Surely they talent for small talk comes with have the tests and the protocols, the lists straightforwardness. A heightened and criteria to help them do the job? capacity for systemising allows one to What script writers and novelists choose handle complex data sets. Restrictions in to write on autistics is their responsibility. one area allow for expansion elsewhere.

It may have an effect on the perception Most Aspies feel that the stereotype of of autism by a lay audience, but still these Asperger’s syndrome as a set of are – or should be – separate spheres. pathological limitations is misleading, This division doesn’t work, neither perhaps to the point where it is wrong to in practice, nor in principle (Draaisma, call it a ‘condition’ at all. Watching 20 or 2010). Movies featuring an autistic 30 of these self-presentations suffices to protagonist are more often than not experience the emergence of a radically informed by specialist advice from different stereotype, psychiatrists. Actors one that features spend time with compensatory talents autistic persons to “fictionalised autistic and capacities, an present a truthful persons in movies or novels image that is fit to rendition of autistic are there for particular figure on an agenda behaviour. Novels may reasons” of emancipation. be equally supported Well into the 1980s by specialised it was the specialists – knowledge. paediatricians, psychiatrists, clinical Christopher, the young autistic psychologists – who shaped the public protagonist of Mark Haddon’s The Curious image of autism. Today, the general Incident of the Dog in the Night-time, had understanding of autism is shaped from to take a test. His teacher holds a tube of many different sides, such as education, Smarties and asks him what he thinks is literature, film and news media. With it inside. ‘Smarties’, Christopher says. Then came a proliferation of stereotypes, even she pulls out a small red pencil, puts it to the point where one may ask just how back in and says: ‘If your mummy came much variation is compatible with the in now and we asked her what was inside very idea of a stereotype. How much the Smarties tube, what do you think she diversity can stereotypes assimilate before would say?’ ‘A pencil’, Christopher says it becomes meaningless to think of them (Haddon, 2003). This scene actually came as stereotypes at all? And even if one from a guide for people who work with evades the naive question which of these autistic children (Howlin et al., 1999). stereotypes are ‘true’, one may still Another case in point are the selfwonder why it is that some stereotypes presentations of ‘Aspies’ on YouTube. are felt to be convincing while others There are literally thousands of these. seem unlikely and far-fetched.

What can’t fail to impress the viewer is Part of the answer, no doubt, is that the degree to which these monologues fictionalised autistic persons in movies are impregnated with the central concepts or novels are there for particular reasons. of modern research on autism. Aspies Stuart Murray analysed a series of movies discuss – and often contest – their featuring autism and demonstrated that purported lack of empathy, their problems it is mostly the savantism – having with establishing central coherence, their computers for brains or possessing sensitivity to sensory overload, their ‘male supernatural pattern-recognition skills – brain’ and the tendency to systemise that that drives the plot (Murray, 2008). comes with it, their limited capacity for Autistic persons in movies are often mind reading or their inability to handle extremely gifted in some arcane domain. false beliefs, figurative speech, innuendos In actual fact, savantism is extremely rare, and jokes. In some presentations it seems also among autistics. as if a psychiatrist is discussing one of When they make their appearance his patients with a colleague. Selfin novels, autistics likewise serve descriptions such as these are part of circumscribed narrative goals. Don what philosopher Ian Hacking has Tillman, in The Rosie Project, is an autistic called the ‘looping effect’, the intricate geneticist who has had several interaction between the label and the unsuccessful dates and now decides that understanding of the person so labelled the best solution to his ‘Wife Problem’ (Hacking, 2007). would be to devise a questionnaire to But by these very same selfnarrow down the number of plausible presentations, Aspies also define candidates (Simsion, 2013). Following themselves as a counter culture. They Don on his erratic course, the reader gets emphasise the productivity and benefits a fresh appreciation of just how subtle of some of their limitations. Single the do’s and don’ts of budding mindedness can be translated as a sense

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relationships are. The novel is really about the complexity of love and romance. A comparable lesson teaches Christopher in The Curious Incident. He dislikes lies and fantasies because his reality is complicated enough as it is. But most of the other characters lie to him, if that suits them better. Again, the boy’s inability to handle alternative versions of reality serves to contrast autistic sincerity with ‘normal’ dishonesty.

Both Christopher and Don succeed in their pursuits: solving a murder mystery and finding a wife. In both cases it is a victory against all odds, of challenges overcome. In the process they have become endearing to the reader. But for many real-life autistics, entering romantic relationships is a thorny project that easily ends in failure and sometimes in a life of loneliness and isolation. This is not to say that the Don Tillman character is ‘wrong’, rather that, sadly, Don’s success is not very representative of what most autistic individuals experience in their own lives.

Burks-Abbott (2008) pointed out that there are dozens of books on autism written by autistic authors, but that lay audiences still prefer fictionalised accounts of autism over non-fiction accounts. He hints at the possibility that the stereotypes set up by novels and movies may eclipse those of psychiatrists and other experts. This is not unlikely at all. Both The Curious Incident… and The Rosie Project were bestsellers. Their account of the autistic experience must have been a major force in shaping lay understandings of autism.

In a later publication on the analogy of compound photography, Galton addressed the objection that generalisations are not so much determined by the number of components, but rather by the impression they make. He conceded that the same thing happened if one of the individual portraits had sharp contours, determining a disproportionate part of the composite portrait. It was easily solved: he threw the sharp portrait a little out of focus, thus quietly correcting its biasing influence on the pictorial average. This, sadly, can’t be done with the kind of stereotypes that emerge in society. And perhaps it isn’t necessary. Rather than trying to expel stereotypes or asking which ones are ‘true’, we should be aware of their origin, the forces that shape them and the agendas they’re on.

I Douwe Draaisma is Professor Theory and History of Psychology at the University of Groningen d.draaisma@rug.nl

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Is autism a get-out-of-jail-free card?

Jon Sutton on a one-day conference on autism and the criminal justice, funded by the Society’s Public Engagement Grant scheme ‘I had my favourite hoody on, I wore it all the time. I used it to block out peripheral vision, and I liked the sensation on my cranium’. So said Alex Evans, from Optimism in Autism. So when the burly security guard in the Job Centre barked ‘Take down your hood!’ repeatedly, grabbing Alex’s shoulder, he ‘went into meltdown’. ‘The word “subtlety” doesn’t come into our vocabulary very often.’ The situation went from bad to worse, and Alex found himself in a confusing and stressful police interview.

Could autism awareness training have helped the professionals involved to deal with the situation differently?

Alex thinks so, pointing to numerous aspects of such encounters which don’t suit a person with autism: flashing lights and a big police presence lead to sensory overload, fast talking and the autistic tendency towards literal interpretations can lead to serious misunderstandings.

Alex admitted that his own failure to disclose his autism meant he ‘lost all rights as a vulnerable adult’, but he said that as an 18-year-old it was not the easiest thing to admit: he was still ‘in denial’ about his diagnosis. The use of an ‘Autism Alert Card’, produced by the National Autistic Society, could help. ‘One of my friends calls it “the get-outof-jail card”,’ said Alex wryly.

The victim perspective came from Robyn Steward (autism consultant, author and broadcaster), with a deeply affecting account of her own experiences. The ‘black and white’ view of the world, which Alex had also mentioned, made it extremely difficult for Robyn to come to terms with what had happened to her. ‘I found the whole thing really confusing,’ she said. ‘Putting the pieces together and seeing the bigger picture.’ Robyn said that 1

people with autism can struggle to understand the justice system: ‘I eventually came to realise that just because a person does not get prosecuted does not mean the crime didn’t happen.’

Turning to the research, Professor Glynnis Murphy (Tizard Centre, University of Kent) described the difficulties in finding unbiased samples and good-quality diagnoses.

However, through systematic review Professor Murphy found that if anything – certainly when it came to young people – fewer with autism spectrum disorder commit crimes than those without. According to Dr Juli Crocombe (St Andrews Healthcare), the ‘issue of the internet is more and more prevalent’ in those who do.

Outlining the case of Gary McKinnon, saved from extradition to the US on hacking charges after a decade-long fight, Crocombe considered the ‘promising but immature science’ of cybercrime offender profiling.

There’s a need for early recognition and diagnosis of autism (in McKinnon’s case in came part way through), and preventative education around the use of IT. But how do you risk assess, monitor and manage? ‘They’re four steps ahead of me in the IT world,’ admitted Crocombe.

People with autism are not in such an advantageous position when it comes to understanding the police caution, with its complex conditional double negatives.

Inspector Huw Griffiths (Hampshire Police) described an alternative, based on

‘Widgit’ symbols and pictures.

Failure to understand rights may lead to miscarriages of justice, so it was good to hear that implementation of the new system in two Hampshire custody centres was yielding promising results. But for DS Mick Confrey (Greater Manchester Police) much more is needed. He suggested that autism advocate groups should look at the transgendered community to see how they got an appendix to the Police and Criminal Evidence Act, and that the police should be less wary of using powers under the Mental Health Act: ‘It’s there for a reason but we keep shying away from it.’ Sue Mulcahy (University of Liverpool) wrapped up before lunch with a call for more training of police, barristers and prosecutors: ‘Those attending training can be surprised by the prevalence of autism and the hidden nature of many difficulties.’

After the break, Dr Katie Maras (University of Bath), Dr Laura Crane (City University) and Michelle Mattison (Lancaster University) considered how to obtain best evidence at police interview.

Police need to manage sensory issues in the interview room, set boundaries to questions and give careful consideration to how to ‘reinstate context’ in recall. The traditional ‘cognitive interview’ appears not to work too well for those with autism, and the speakers advocated the use of a ‘sketch plan’ as an alternative.

Drawing can help people to focus, retrieve more information and reduce anxiety. With appropriate preparation and support from an intermediary (also advocated by David Wurtzel of City University later in the day), people with autism can provide detailed and accurate evidence.

So is autism a ‘get-out-ofjail’ card? Professor Simon

Baron-Cohen (University of Cambridge) recounted his experiences as an expert witness, considering whether the person is fit to plead and to participate effectively in the legal process. ‘Judges are actually very keen to get people with autism into court’, he said: ‘They want to give them the chance to present their defence.’ We need to make sure courts aren’t ‘off limits’ for people with autism: reducing some of the formality; avoiding ambiguity, metaphors and idioms in questioning; and being mindful of the extremely high levels of suicidal thoughts in adults with autism (a factor in the successful blocking of extradition for Gary McKinnon). But autism is not a get-out-of-jail card, BaronCohen concluded, citing the case of Simon Thompson (who received 20 years in prison after killing his daughter). Instead, autism should lead to reasonable adjustments to ensure access to a fair trial.

Describing such reasonable adjustments, Helen Johnson (Emery Johnson Astills) spoke about her work in the trial of Michael Piggin, a teenager whose trial on terrorism charges collapsed earlier this year. Johnson described how she and her team would get Michael to sit in the witness box during breaks in proceedings, answering questions on his specialist interest (the war). ‘It was about enabling the defendant to communicate and participate,’ Johnson said. As Baron-Cohen had concluded before her, this was not about avoiding justice, it was about accessing basic human rights.

I The Society’s Brain Injury and Criminal Justice Working Party is drafting a paper on Children and Young People with Neuro-disabilities in the Criminal Justice System. For Public Engagement Grants, see www.bps.org.uk/pegrant

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Research. Digested.

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www.bps.org.uk/digest ‘Easy to access and free, and a mine of useful information for my work: what more could I want?

I only wish I’d found this years ago!’

Dr Jennifer Wild, Consultant Clinical Psychologist & Senior Lecturer, Institute of Psychiatry ‘The selection of papers suits my eclectic mind perfectly, and the quality and clarity of the synopses is uniformly excellent.’

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CAREERS

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‘Autism can be of a positive type’ Ian Florence talks with Stella Acquarone about her work and her own problems in social interaction

arrived early at Finchley Road for my interview with Dr Stella Acquarone, founder and principal of three organisations in the field of child and infant mental health. I used up time by visiting Karnac Books, a shop specialising in psychotherapy and psychoanalysis titles, where I found Dr Acquarone’s Infant–Parent Psychotherapy: A Handbook.

Walking to her house I passed blue plaques marking where the children’s book artist Kate Greenaway and classical musician Denis Brain lived. Dr Acquarone

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is as cultured as the area she lives in, talking quietly but passionately about her interests.

‘The baby is a passionate communicator’ ‘I grew up in Argentina as one of four siblings. My mother was a science professor, my father an engineer and businessman with a national construction company. As a child I was shy and felt left out, though I had a happy childhood and

a very supportive wider family. I became fascinated by social relationships because I found them so difficult to understand.

My father had a huge library and, around the time I started getting interested in psychology, I was reading a book on autism in our garden, thinking “So that’s why I think and feel like that”. My father joined me and I announced, “I think I may be autistic.” He had read the book and said, “Me too.” Perhaps that’s why I’ve never thought of autism as a purely negative condition. Autism can be of a positive type when you are aware of it, learn to manage it, organise you life to take account of it. There is, of course, a negative version as well.’

Our conversation took a detour when I asked Stella if she’d started studying psychology to understand herself. ‘Yes, later on. But initially I didn’t set out to be a psychologist. I was a very good pianist, at concert level, and initially studied at the Conservatoire in Buenos Aires. The problem was I couldn’t face playing in public – I tried three times but it didn’t work. My parents said “You need to study something else”, so it was only then that I changed tack. My mother wanted me to become a medical student but psychology won.’

Stella studied at the Jesuit University in Buenos Aires. ‘In 1960s Argentina approaches to studying psychology were quite different from those we’re used to in the UK now. I’m glad 50 per cent of the course was medical so I got a grounding in neuroscience. A lot of people associated with psychoanalysis had moved to Argentina to escape the war so they were a strong influence on how we did things; Freud is still cited as a huge influence on many aspects of Argentinean life. On the other hand, the sort of psychology vs. psychiatry conflicts so prevalent in Europe at that time seemed less important. It was natural for me start studying psychoanalysis.’

Stella came to the UK and finished her training in child and adult psychotherapy at the Tavistock Clinic.

‘I wanted to do another PhD here after

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the one I’d done in Argentina but it was very competitive. I liked the UK straight away. People talk softly to each other, which suits me. I love living in north London which has huge numbers of associations with Freud and the psychoanalytic movement.’

Stella worked as a child psychotherapist in the NHS for 32 years.

‘I quickly realised that parents seemed to know what was happening with their children at a very young age, and were upset that professionals didn’t act on this. I started doing three hours a week outreach in clinics and GP surgeries, trying to calm fears if parents were projecting and identify issues in their children that could be treated. I worked with Katherine Aitkins, an astonishingly insightful community paediatrician. We opened up the field of working with mothers and children and began to see that parents were identifying unusual children – unsmiling ones, fearful ones, those who didn’t want to be picked up.’

On the website of Stella’s Parent Infant Centre (of which more later, and see p.785), www.infantmentalhealth.com, she describes a very wide variety of approaches including neurobiology, psychodynamics, behavioural, cognitive, humanistic, bio-psychological, sociocultural. ‘Psychology is a way of understanding. It provides you with a range of approaches and these should not constrain you. They should help you to look at all factors. So I can use both what are seen as psychological and what are seen as psychoanalytic approaches as the client or situation requires. And I think any therapist should draw on other areas: I get insights from philosophy and poetry.’

Stella emphasises the influence other thinkers have had on her. ‘I was considered odd because I actually talked to babies. I felt that you should try to understand what very young children were trying to communicate. I was hugely influenced by the work of Colwyn Travarthen whose famous quotation “the baby is a passionate communicator” is central to what I do. And there are other influences too numerous to mention – including, Freud, Melanie Klein and, to some extent, John Bowlby, who was at the Tavistock when I was there, Allan Schore and Jaak Panksepp.’

‘The issue is the potential, not the harmful’ Stella stopped working in the NHS seven years ago (‘this happened when I was no longer allowed to work with health visitors’), concentrating on the two organisations she set up in 1990 and also

a third, more recent one. The Parent Infant Centre, runs a linked clinic and training organisation. The clinic offers help and therapy to parents and infants with all sort of difficulties from postnatal depression to sleeping and also social and communication difficulties. The School of Infant Mental Health trains professionals working with infants and parents, such as psychologists, health visitors and paediatricians, in the approaches Stella has developed and provides more intensive training for professionals working with parents and children 0–5.

More recently, the Centre has become associated with ipAn, the International pre-Autistic Network – which increases autism awareness, promotes early identification and intervention, and raises funds for treatment and research, Given Stella’s description of her own problems in social interaction I suggest this move to managing organisations must have been difficult. ‘It was, but my father was a business man and I learnt a lot from him. We try to keep things simple. Most of the people I work with are freelance rather than employed.

I travel around the UK with trainings for the Centre, and some of my work involves looking for grants, for instance.

Our aim now is to gain greater national coverage. In April our training goes online, giving us greater reach. We already provide certain services through Skype, which allows us to reach beyond London and the South East while still keeping it a personal and confidential service.’

Have your overall objectives changed?

‘No. To go back to something I mentioned at the beginning my aim has long been to help those troubled by their autistic tendencies – to help them become positive autistics. I don’t want to get rid of autism, if that was even possible. The issue is the potential, not the harmful.

The approach is to help people to think about autism, to help what we call “preautistic” children structure their mind to allow cognitive and emotional development to occur. Too often people go too quickly with various treatment and therapeutic approaches, for all sorts of reasons. In my view you must first create the foundations which will allow treatment regime to work and be able to feel emotions. The book I am writing now is about Re-Start, an intense infant–family programme, and will emphasise this issue.’

You started out on a journey to understand yourself. Has your career helped you? ‘Yes, particularly studying the autistic mind. We know a lot more than we did about the whole topic, and media

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coverage has raised public understanding, even though it’s tended to emphasise the negative aspects. But there’s still more to learn. You can say that I’m a work in progress. I can speak in public now and I’ve been told I do it quite well. It’s important for me to see listeners’ faces if I am to do that.’ There was a piano in the room where Stella and I talked so I asked her if she could play in public now.

‘No. it’s a private act, a sort of meditation.

I have particular composers who I play to myself.’

If there was one book, apart from your own, that you would recommend to readers of this interview as an introduction to your very syncretic approach to treating families, what would it be? ‘Ben Bradley’s Visions of Infancy is a wonderful introduction to child psychology. It looks at a huge range of thinkers from Darwin to Bowlby and beyond and argues that child psychology is an interpretative discipline rather than part of natural science, perhaps a useful makeweight to some present attitudes.’

On my way back after the interview I see the house of Alma Tadema the Victorian painter and divert to Abbey Road recording studios where the Beatles recorded. In truth, I’d just met a fascinating psychologist in a fascinating area.

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LOOKING BACK

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A continuing journey Patricia Howlin considers where more than 70 years of research and intervention has left us in understanding autism

t is now more than 70 years since Kanner (1943) first described the condition he named ‘childhood psychosis’ but which is now known today as autism or autism spectrum disorder (APA, 2013). This special issue therefore presents a timely opportunity to consider the many changes that have taken place in psychologists’ understanding of autism over the past seven decades.

I

in prevalence estimates reflects a real rise in incidence and, although that remains a possibility, the change in estimates is generally thought to represent increased awareness of autism among many different groups of professionals as well as by the general public. Suggestions of an ‘epidemic of autism’ remain without foundation.

Epidemiology

When autism was first described in the 1940s psychodynamic theories of causation and treatment pervaded much of psychology and psychiatry. Kanner, along with others at the time, regarded autism as ‘the earliest manifestation of

Classification

references

Initially considered to be a very rare condition, prevalence estimates for autism have increased steadily over the decades.

Early epidemiological studies were fairly consistent in suggesting rates of around 0.4 per 1000. However, following the inclusion of autism as a specific disorder in the DSM-III in 1980, clinicians and educators became increasingly aware of the condition. It was also evident that autism occurred in individuals of all levels of ability, from profound intellectual disability to superior IQ, and that it affected adults as well as children. Thus, prevalence estimates have been steadily revised upwards over the years, with recent figures from the Centers for Disease Control and Prevention in the US (CDCP, 2014), for example suggesting rates of 14.7 per 1000 (i.e. 1 in 68 children, although it should be noted that the estimate range varies widely from around 5 to 21 per 1000). There is as yet no evidence that this increase Leo Kanner

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Diagnostic and statistical manual of mental disorders (5th edn). Arlington, VA: American Psychiatric Publishing.

Bettelheim, B. (1967). The empty fortress: Infantile autism and the birth of the self. London: Collier-Macmillan.

Centers for Disease Control and Prevention (2012). Prevalence of autism spectrum disorders – Autism and Developmental Disabilities

Monitoring Network, 14 sites, United States, 2008. Retrieved 22 May 2014 from tinyurl.com/p44dldq Cox, A., Rutter, M., Newman, S. & Bartak, L. (1975). A comparative study of infantile autism and specific developmental receptive language disorder: II. Parental characteristics.

British Journal of Psychiatry, 126, 146–159.

Ecker, C. & Murphy, D. (2014).

childhood schizophrenia’ noting that ‘I do not believe that early infantile autism will at any future time… be separated from the schizophrenias’ (1949). Indeed, one of the leading journals in this field (now the Journal of Autism and Developmental Disorders) was originally called the Journal of Autism and Childhood Schizophrenia.

Experimental and clinical studies conducted during the late 1960s and 1970s contributed to increasing awareness of the distinction between autism and other psychiatric or developmental disorders. Early research and reviews by Michael Rutter (1968, 1972) for example, provided clear evidence of the differences between autism and schizophrenia. In 1970, Hermelin and O’Connor published their classic text Psychological Experiments with Autistic Children in which, via a series of innovative and imaginative experiments, they demonstrated the many cognitive differences between children with autism and children with intellectual disabilities.

Their work, and subsequent experimental studies by Uta Frith (cf. Frith, 1989) also highlighted particular areas of skill among children with autism, as well as areas of deficit.

Many other studies of the characteristic cognitive phenotype associated with autism, and how this differed from other disorders, also emerged during the 1970s. Rutter (1968) had already highlighted the central role of social communication deficits in autism, while Uta Frith’s studies of cognitive processing first brought attention to the deficits in ‘mentalising’ or understanding others’ minds that are characteristic of the disorder (Frith, 1989). Her work was a spur to many other studies of cognitive functioning by individuals such as Francesca Happé and Simon BaronCohen, leading to theories about the potential roles of ‘theory of mind’, weak central coherence or executive functioning deficits in determining how individuals with autism experience and relate to the world about them. Frith was also responsible for translating Hans

Neuroimaging in autism. Nature Reviews Neurology [Advance online publication]. doi:10.1038/ nrneurol.2013.276 Frith, U. (1989). Autism: Explaining the enigma. Oxford: Blackwell.

Frith, U. (1991). Translation and annotation of ‘Autistic Psychopathy in Childhood’ by Hans Asperger. In U. Frith (Ed.) Autism and Asperger syndrome (pp.36–92). Cambridge:

Cambridge University Press.

Green, J. & the PACT consortium (2010).

Parent mediated communication focused treatment in children with autism (PACT): a randomised control trial. Lancet, 9732, 2152-60.

Hermelin, B. & O’Connor, N. (1970).

Psychological experiments with autistic children. Oxford: Pergamon Press.

Kanner, L. (1943). Autistic disturbances of affective contact. Nervous Child, 2,

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Asperger’s accounts of autistic psychopathy in childhood (Frith, 1991) and in highlighting both the similarities and differences between his accounts and those of Kanner.

As functional imaging techniques became increasingly available to experimental psychologists, it became possible to explore the difference between autism and other conditions in much greater depth. However, although resulting in various different theories about cognitive and social processing, brain localisation and function (and lots of pretty pictures), many of these studies have involved very small or poorly ascertained groups of participants, and use experimental paradigms that only distally represent real-world interactions.

Thus, although it is now evident that changes in brain structure, functioning and connectivity are associated with autism (Ecker & Murphy, 2014) the condition is characterised by wide aetiological and phenotypic heterogeneity.

There are currently no imaging techniques that can reliably identify autism at an individual level, and claims for various other biologically based diagnostic techniques (e.g. blood samples or measurement of head circumference) remain without foundation.

Causation As with schizophrenia, autism was initially viewed by many as being caused by disruptions to early ego development, which, in turn, were attributed to inadequate or insensitive parenting.

Although Kanner himself initially believed that the signs of autism appeared so early in life that they must be due to ‘inborn disturbances of affective contact’ he subsequently wrote extensively on the ‘coldness and obsessiveness’ of many parents (Kanner, 1949). He viewed the condition as a combination of biologically based perturbations of development combined with unfavourable environmental factors; but a much more extreme, and widely popularised theory,

217–250.

Kanner, L. (1949). Problems of nosology and psychodynamics in early childhood autism. American Journal of Orthopsychiatry 19(3), 416–426.

Kasari, C. & Patterson, S. (2012).

Interventions addressing social impairment in autism. Current Psychiatry Reports 14(6), 713–725.

Lovaas, O.I. (1987). Behavioral treatment and normal educational and

was that of Bettelheim (1967). He parents of children with autism compared considered autism to be directly caused with parents of children with other by parental pathology and that it could communication disorders. The only be cured by separating children from comparative lack of effectiveness of their parents – a theory that resulted in psychoanalytic-based therapies compared unnecessary distress for parents in many with more structured educational countries of the world. approaches for school-aged children Psychoanalytical views about parents’ was also confirmed by the same research role in aetiology proved very difficult to group (Rutter & Bartak, 1973). dispel despite growing recognition of the In the US, too, from the late 1960s association between autism and organic onwards, there was a rapid growth in conditions (e.g. links with epilepsy, the use of operant-based techniques thalidomide, or rubella virus, etc.) with children with autism. These initially Early suggestions that autism might focused on the elimination of ‘challenging be due to genetic causes were also behaviours’ (often using aversive dismissed, but twin and family studies procedures including electric shock), with conducted by teams of psychologists and a very mechanistic approach to teaching psychiatrists in the developmental skills, and 1970s and 80s somewhat simplistic began to provide notions of reinforcement “Theories about the role of strong evidence of (food rewards the highly heritable predominated). However, ‘refrigerator’ parents took nature of autism. they did provide evidence many years to dispel ” However, despite that the behaviours of recurrent media children with autism, far claims that the from being irreversible, could ‘gene for autism’ has been discovered, the be significantly modified. Unfortunately genetic mechanisms involved in autism most of the children involved in these remain uncertain. Both common and rare programmes were treated as inpatients, genetic variations have been identified in often over long periods of time, with the families with a child with autism, but the result that when they returned to their role of these variants is unknown. families any advances that they had made Moreover, many of these variants have while in hospital tended to disappear. also been identified in other psychiatric Eric Schopler was among the first to conditions, such as schizophrenia, emphasise the importance of working depression, bipolar disorder and ADHD with parents as co-therapists (Schopler (Smoller et al., 2013). et al., 1982). His TEACCH programme (Treatment and Education of Autistic and related Communication handicapped Children), whilst based on behavioural Intervention principles, focused on the generalisation Theories about the role of ‘refrigerator’ of life skills to the child’s regular parents took many years to dispel and environment. Ivar Lovaas, one of the resulted in early-intervention programmes earliest proponents of operant techniques frequently being psychodynamic in for children with autism also became approach. The first empirical aware that the direct involvement of psychological studies to disprove the parents was necessary in order to achieve theory of parental inadequacy/pathology successful generalisation and maintenance were conducted by Rutter and colleagues of behaviours. However, his claim (Cox et al., 1975). They were able to (Lovaas. 1987) that 40 hours a week of demonstrate that there were no early, intensive home-based behavioural differences in parenting style, parenting intervention (EIBI) for two years or more characteristics or psychopathology in

intellectual functioning in young autistic children. Journal of Consulting and Clinical Psychology, 55, 3–9.

Magiati, I., Tay, X W. & Howlin P. (2012).

Early comprehensive interventions for children with autism spectrum disorders: A critical synthesis of recent review findings.

Neuropsychiatry, 2(6), 543–570.

Moree, B.N. & Davis, T.E. (2010).

Cognitive-behavioral therapy for

read discuss contribute at www.thepsychologist.org.uk

anxiety in children diagnosed with autism spectrum disorders: Modification trends. Research in Autism Spectrum Disorders, 4, 346–354.

Piven, J., Rabins, P. & the Autism in Older Adults Working Group (2011). Autism spectrum disorders in older adults: Toward defining a research agenda.

Journal of the American Geriatric Society, 59(11), 2151–2155.

Rogers, S.J. & Dawson G. (2010). Early Start Denver Model for young children with autism: Promoting language, learning, and engagement. New York: Guilford.

Rutter, M. (1968). Concepts of autism: A review of research. Journal of Child Psychology and Psychiatry, 9(1),1–25.

Rutter, M. (1972). Childhood schizophrenia reconsidered. Journal of Autism and Childhood Schizophrenia, 2(4),

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could result in ‘normal’ functioning has continued to generate much controversy.

Although, when compared with ‘treatment as usual’, early intensive programmes supervised by highly trained (and expensive) consultants have been found to result in greater intellectual and/or behavioural improvements at a group level, individual change is much more variable (Magiati et al., 2012).

Over the last two decades interventions based on behavioural strategies have continued to be the predominant approach to psycho-social problems. However, these have moved a long way from the mechanistic approaches of the early 1970s, which paid little attention to normal developmental trajectories, or the importance of learning in naturalistic settings. The Early Start Denver Model (Rogers & Dawson, 2010) for example is founded on behavioural principles but also takes account of normal developmental processes and sequences. In particular, there is a strong focus on reciprocal social interaction, and evidence from a randomised control trial suggests that children involved in the programme (20 hours a week over two years) showed greater improvement in cognitive and language abilities and adaptive behaviour and fewer autism symptoms than did non-treated children.

Several other recent randomised control trials add to the evidence base for early social communication focused programmes, designed to encourage parental synchrony (see Kasari and Patterson, 2012). Language training programmes, too, have moved a long way from the very mechanistic sound imitation procedures of the 1970s, with the focus being much more on reciprocity between adult and child, using multiple communication forms.

For older children, there is now a wide range of different approaches available to enhance social skills or deficits related to ‘theory of mind’ (Green et al., 2010; Kasari & Patterson, 2012); the effectiveness of cognitive behavioural therapy is also being explored in the

315–337.

Rutter, M. & Bartak, L. (1973). Special educational treatment of autistic children: A comparative study. II. Follow-up findings and implications for services. Journal of Child Psychology and Psychiatry, 14, 241–270.

Schopler, E., Mesibov, G.B. & Baker, A. (1982). Evaluation of treatment for autistic children and their parents.

Journal of the American Academy of

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autism

Autism does not disappear at age 18, but unfortunately most interventions and support networks do!

treatment of comorbid mental health problems (Moree and Davis, 2010).

Although initial findings from such research are encouraging, there remains great variation in treatment response (both among individual children and according to the different domains assessed); evidence of generalisation of treatment effects to new skills or new settings is limited, and there is no evidence of long-term impact or significant improvements in functioning in later childhood/adolescence. Claims, for example, that two years of EIBI result in significant lifetime savings are both spurious and misleading. Research into the individual characteristics of children or families that are related to outcome is also in its infancy although more recent treatment trials are beginning to focus much more on moderating and mediating factors that are associated with treatment outcomes.

It is important, too, to recognise that most intervention research continues to focus on children who come predominantly from relatively highfunctioning, middle-class families who

Child Psychiatry, 21, 262–267.

Smoller, J.W. & the Cross-Disorder Group of the Psychiatric Genomics Consortium (2013). Identification of risk loci with shared effects on five major psychiatric disorders: A genome-wide analysis. The Lancet, 381(9875), 1371–1379.

Wing, L. (1981). Asperger’s syndrome: A clinical account. Psychological medicine, 11, 115–129.

have the resources to participate in clinical studies. This excludes the majority of children with autism, and future research needs to include these underrepresented groups to broaden our understanding of intervention effectiveness (Kasari & Patterson, 2012).

A further need is to focus more on the development of effective short-term programmes that will help to improve access to high-quality treatment for a majority of children with autism, not just the privileged few.

Finally, it is crucial to recognise that autism is not a childhood disorder.

Individuals are adults with autism much longer than they are children with autism.

Autism does not disappear at age 18, but unfortunately most interventions and support networks do! Several recent studies and systematic reviews have highlighted both the scarcity of studies of adults with autism and the poor quality of what little intervention research does exist. As highlighted by Piven and colleagues (2011), we need systematic studies on the characteristics (behavioural, neuropsychiatric and medical) associated with ageing in autism, and potential interventions, both individual and societal, that may improve outcome and quality of life. If the advances in comprehensive treatment programmes for very young children can be applied across the lifespan, then the current generation of children with autism may face a more positive future.

I Patricia Howlin is Emeritus Professor of Clinical Child Psychology at the Institute of Psychiatry, London patricia.howlin@kcl.ac.uk

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Annual Conference 2015 5-7 May / ACC, Liverpool Note the change of dates Call for submissions now open

Themes Behaviour change; Culture and identity; Disaster, trauma and crisis; The social brain; General Here’s what previous delegates have said about attending our flagship event…

To participate in the British Psychological Society Annual Conference 2014 was the best thing I've done for my profession. I have gained considerable knowledge about psychology as an international student.

So, I would recommend it to all psychology students who wish to build a career on any divisions of psychology The BPS conference was excellent and exceeded my expectations.

The keynote talks were fascinating and the presentations provided lots of inspiration for my research. Thank you!

www.bps.org.uk/ac2015 ‘big picture’ pull-out www.thepsychologist.org.uk

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ONE ON ONE

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… with Simon Baron-Cohen

coming soon

‘Stories of forgiveness are inspiring to me’

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One moment that changed the course of your career In September 1981, June Felton, headteacher of Family Tree School for Autism, phoned me to say she’d heard I’d just graduated. She said she had a vacancy for a teacher in her small experimental unit of just six kids and six teachers that she ran in the back of her house in Hadley Green in Barnet, North London. It was experimental in that she had video cameras in every room: staff meetings at the end of each school day comprised analysis of the videos, to learn what did or didn’t work in specific teacher–child interactions.

It was an amazing environment because in those days there were so few specialist schools for these kids, because the school learned by observation and evidence, and because the headteacher invited a stream of stimulating professionals to come visit. I was the teacher,

the school minibus driver, the cook, whatever was needed.

That inspiring year allowed me to get to know those six children in detail, and their parents, and led to my writing to my wonderful former tutor in Oxford, Peter Bryant, to ask him where to study for a PhD in autism. He wrote back to say ‘There is no one better than Uta Frith’. He was of course right.

Just this year I met up with June Felton again, who has just turned 80 and lives in Jerusalem. She came to Cambridge and presented me with a most special gift: a complete set of the videos from the early 1980s at Family Tree, as a donation to the Autism Research Centre, with the original parents’ consent.

She and I are still in touch with the parents of those original six children, now in their early forties. We talked about how those films – even though from a small sample – might give clues from a microanalysis of what predicts longterm outcome.

Simon Baron-Cohen is Professor of Developmental Psychopathology and Director of the Autism Research Centre at the University of Cambridge

One cultural recommendation The film The Enigma of Kaspar Hauser by Werner Herzog (1974). It is the story of a young man who turned up in Nuremberg in 1828. He had

A special feature on Sherif and Robbers Cave; how relationships help us age well; can reassurance hurt?; and much more...

I Contribute: reach 50,000 colleagues, with something to suit all. See www.thepsychologist.org.uk/contribute or talk to the editor, Dr Jon Sutton, on jon.sutton@bps.org.uk, +44 116 252 9573 I To advertise: Reach a large and professional audience at bargain rates: see details on inside front cover.

almost no language, no social skills, and just a few letters in his pocket that hinted at his history of how he had been reared in social isolation for the first 17 years of his life.

It is also a fascinating factual drama depicting the efforts

by Herr Daumer, back in the early 19th century, to teach language and social skills to Kaspar, despite his uncertain mental age. Daumer’s empathy for someone who is different shines through.

ask more probing questions.

A ‘systemising’ approach to social interaction may mean their difficulties with cognitive empathy ‘leak out’ via rather subtle clues such as frequent faux pas, or talking too loud, or standing too close to others, or failure to understand socially appropriate boundaries. It’s what Franky Happé and Uta Frith called ‘hacking out’ social skills, a good phrase that underlines how complex a phenomenon it is that we are dealing with, where a person may try to ‘emulate’ what others do more intuitively.

One inspiration In 2013 I gave the ‘Forgiveness lecture’, and on the panel with me was Mary Foley, mother of One proud moment 15-year-old Charlotte.

3 June 2014, when we Charlotte was stabbed published our paper in and killed in east London Molecular Psychiatry, showing in an unprovoked attack by a stranger called Beatriz, who believed Charlotte was someone else.

Beatriz wrote to Mary from prison, wracked with pain and guilt, asking for forgiveness for killing Charlotte in a moment of madness.

Mary realised Beatriz was a troubled young person who had made the worst mistake a person could ever make, and wrote back, saying ‘I forgive you’.

Taking amniotic fluid Stories of forgiveness over-riding the desire for elevated rates of fetal revenge and the emotion of testosterone (and the fetal sex hatred are inspiring to me, steroid hormones from which and give me hope that, even FT is synthesised) in the in currently desperate regions amniotic fluid of babies who like Israel and Palestine, later received a diagnosis of humanity may resurface. autism or AS (see Find out more about the tinyurl.com/n64k2qy). As I remarkable charity called cycled home from the Autism the Forgiveness Project here: Research Centre that day and www.theforgivenessproject.com crossed the bridge over the River Cam, I reflected on the /stories/mary-foley-england long journey from our first amniocentesis study in 1997, One autism myth to this one 17 years later. To That a woman can’t have the rest of the world, it was Asperger syndrome (AS) if just another paper… to me it she can chat, make eye was one of those deeply contact, fit into a friendship group, and raise a family. This satisfying moments, marking a special milestone for our hard myth is one of the reasons working and dedicated many women who seek a research team. diagnosis are turned away or misdiagnosed, and it persists because many clinicians focus Many more answers at on surface behaviour and don’t www.thepsychologist.org.uk

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