Category Archives: philosophy

PHILOSOPHY FOR CHILDREN

It has been many months since my last blog post. This is in part because this has been a busy time for me and I have been involved in some interesting projects. This is one of them.

THE PROJECT

I teach a class of children with severe learning difficulties aged 11 to 14. Last year we took part in a project to deliver Philosophy for Children (P4C) to these children. The project was delivered by Gina Mullarkey of Cumbria Development Education Centre (CDEC), who displayed both enthusiasm and creativity in making the topic accessible to my pupils. Some staff had the benefit of P4C training prior to the project. The children did not. But it soon became clear that the children were more open to the ideas than some of those staff who had not received training and were equally new to the concept. The opening sessions were about establishing baselines for pupil knowledge and perceptions, (in this case we chose Africa) in order to challenge those perceptions and gauge how well the children were able to respond to these challenges, to think for themselves and maybe change their ideas. This process was more important than any learning outcomes measured against fact based criteria of true or false.

The children took part with great enthusiasm. The task was open ended. There were no right or wrong answers, only interesting ones. We were asking children to demonstrate what they thought in order to ask them, “Why do you think that?” and not to tell them they were wrong. The staff, or at least a significant number of them, were uncomfortable with this at first. Their usual role is to assist children to succeed, which usually means, “Getting it right,” or “Doing it well.” They tried to do this, valiantly attempting to persuade children to adopt the right answers. But there were no right answers and it was instructive to watch children listening when staff disagreed with each other.

Education is largely driven by measurable outcomes that tick boxes: knowledge gained, skills acquired. But the third element in the pedagogy of the National Curriculum, “understanding,” is less easily measured and defined. This is where P4C comes in. Can children use their knowledge and their skills to make informed choices? Can they generalize their learning in order to apply it to novel situations? Can they be persuaded to change their minds and not just change their answers in order to please their teacher?

Children are very good at working out what we want even if it makes no sense to them. Here I am reminded of an experience many years ago. I was a student on teaching practice. One of our assignments was to assess conservation of number by presenting primary age children with a line of objects. Then we would alter the spacing and ask the pupil if there were more or less or the same number. Children who had not yet acquired the concept of conservation of number would answer, “More,” or “Less,” depending on the spacing. One of the more able children got the test right. But then I heard him say to the next child in line, “We know that there’s more when he moves them. But tell him they are the same. That’s what he wants.”

One advantage of working with children with learning difficulties, especially those on the autistic spectrum, (who make up at least a third of my pupils) is that they are less skilled in divining our expectations and less inclined to meet them anyway. But it does not follow that they are less capable of independent thought. They are by no means more capable either. They just are more likely to tell us exactly what they are thinking rather than what they think we want them to say.

I must say that staff became more adept at facilitating the process rather than influencing the outcome as time went on. I would love to continue with P4C in the future with the following proviso. As well as challenging children’ ideas and encouraging them to think, we, the staff, should enter more fully into the process and be prepared to expose our ideas to challenge and give children the opportunity to change the way we think.

THE PROJECT IN CONTEXT

P4C will achieve little if it is treated as a discrete project rather than an attempt to change the way we expect our children to work across the curriculum. Of course the rules for spelling or arithmetical facts are not up for debate in the same way that concepts of fairness and justice are. But even here we can make some changes to positive effect.
I used to teach rules for spelling and then teach the tricky words that broke the rules. One pupil, who happened to be autistic, was deeply distressed. Words that broke the rules! How could that be? Now I teach that there are different rules for different words and there are different rules because our language is a mix of different languages, each with their own rules for spelling. Sometimes they even have different alphabets. Children learn that the rules are contingent upon the historical circumstances in which they arose, although I do not use those exact words when I teach them.

How is this related to P4C? Children are introduced to morality via rules. Young children accept rules and apply them rigidly. What happens when rules collide or contradict each other? Honesty is the best policy. So should you betray your friends by always telling the truth? What if you are captured by the enemy during wartime? Do you lie to your captors? (A particularly apt analogy for my war obsessed teenage boys.)

So P4C has encouraged me to always explain rather than just tell, even when imparting apparently value free information about spelling. The children on the P4C course now routinely challenge me with philosophical questions and I always take time to explore the answer with them.

I am delivering a presentation on evolution. “Please, sir. Do animals think?” “What happens when you die?” “Will we be extinct one day?”

We are learning about Greek myths. They ask, “How do we know if stories are true?” “That’s silly. Why did the Greeks believe that?”

We are comparing beliefs in religious education. They ask, “Does every religion have a different god?” “How do we know which one is true?” And then a child says there is no God and I talk about my atheism in a way that still respects the faith of believers.

These are conversations with children who have severe cognitive and developmental delays. Fantastic!

THE PROJECT IN ACTION

Thus the children are doing P4C. What about me? I have not tried to carry on with sessions like those that Gina from CDEC delivered during the project. I did not want P4C to become another subject on the timetable. Rather, I have sought ways to use it across the curriculum. Story time has lent itself to this in a big way.

Like P4C, story time gathers the children together in a circle. Last year we gathered beneath a P4C wall display which celebrated the activities with photos of the children taking part, their written and drawn responses and some of the key points made by Gina. Sometimes the display functioned as an aide memoire. Who is talking? Who is listening? How do we take turns? More often it signified that we were in the thinking corner and encouraged a philosophical approach to the activity.

This was especially the case with a collection of stories, “The Story Giant.” by Brian Patten. The narrative link was that the story giant was the custodian of all the stories in the world but now he was dying because there was one story that still eluded him. And if he dies all the stories in the world die with him. He gathers together 4 children from very different backgrounds from around the world, summoning them from their dreams. In the course of the book each child understands more about themselves and about their companions. They come to terms with their own internal conflicts and, thus strengthened, overcome their differences in order to unite in an attempt to discover the missing story and save the giant. Read the book to learn if they succeed.

This book totally gripped my children. It is structured around the narrative device of each child and the giant telling a series of stories. Dramatic tension comes from the physical decay of the giant’s castle as it crumbles around them and the growing weakness of the giant himself as he nears death. Meanwhile the stories themselves, many of them traditional folk tales, provoke ambiguous and sometimes contradictory responses from their audience. Perfect for P4C! And perfect for my children too.

After every chapter we engaged in discussions that would not have been out of place in Gina’s P4C sessions. Sometimes discussions were passionate. I would point to the wall behind me and remind them of the rules we had agreed. These rules were enabling rather than restrictive. As I wrote in an earlier piece of feedback on P4C and Autism:

The beauty of these rules was that they were not intended to restrict pupils. Instead the rules enabled them to work together and make discoveries about themselves, their friends and the world around them.

This is the essence of P4C: rules that help you choose; not rules that take away choice. This is a perfect fit for my own philosophy of education. P4C is P4Me.

Autism, Ethics and the Good Life: Is increasing functionality always good?

Leneh Buckle is autistic, an academic and a parent, although none of her children are autistic. Her biography for the conference handouts notes that as child she “was considered severely autistic and learning disabled. Having gained the communication and interaction skills she was predicted never to achieve, Leneh feels she has lost something very special in the process. Hence the title of her presentation.

Is increasing functionality always good?
Functionality is functional in practice.
Why increase functionality?

to minimize suffering

to maximise happiness

to increase autonomy

to increase distributive justice by sharing the benefits of society.

Autism Specific functionality
Enhancing communication or expression makes social interaction more rewarding for the child and for the carers. This makes them better carers which clearly benefits the child.
Enhancing independence and productivity has clear benefits for the autistic person.

Why not increase functionality?
Ignorance is bliss. No drive to communicate so no associated problems.
Cost or risk to benefit ratio has to take account of the risks associated with some treatments and their financial cost.
There is also the cost to the child in terms of loss of freedom and time to be a child. Some treatments are intensive and can interfere with an ordinary childhood.
There can be a loss of self esteem if your awareness of goals includes awareness of your inability to reach them.
Some treatments can be mentally invasive.
Superficial gains in communication can be deceptive.
Gains can raise expectations that cannot be met.
Identity can be effected. The feeling of being in between two worlds can make you more lonely.
There is also the possibility that normalization can lead to the loss of special skills and autistic traits that you value.

Personal Autonomy 
Having personal autonomy and being able to make decisions is good.
But autonomy requires communication which may require interventions to increase functionality.

Personhood
Your sense of personhood is not just about autonomy in the social world. It is about autonomy over your inner world.
When making ethical decisions for others (eg parents and professionals making decisions for children) and determining their best interests, we should be clear about whether we are seeking to mitigate impairments or enhance existing predispositions.
Increased functionality should not happen at the expense of  a loss of personal identity.

Conclusion 
Increasing functionality is a good that should be measured against the yardstick of enhancing personal autonomy and self esteem while protecting a person’s sense of who they are.

I am afraid that my notes do not do justice to a very thought provoking presentation. At one level we can all harbour regrets for the loss of innocence that is an inevitable part of growing up. But for most of us this seems like a natural process, albeit one that is profoundly influenced by the social and cultural values of the society in which we are raised. But what of the autistic innocent who seems indifferent to or unaware of these values? How far should we intervene in order to engage them in these linked processes of socialization and acculturation? Buckle reminds us that the benefits of increased functionality in the social world are not automatically to be welcomed. They have to balanced against their costs.

There is another question as well. What about those people whose autism is so severe, or those who have what is sometimes termed severe learning difficulties or cognitive impairments? What does living the good life with autism mean for people whose level of dependency will always outweigh their potential for autonomy and independence? These questions were addressed by Virginia Bovell and Eva Feder Kittay in the next two presentations and will be the subject of future posts.

Autism, Ethics and the Good Life: disorder or identity?

Sandy Starr is an adult who was diagnosed with Aspergers Syndrome in his teens. His work for the Progress Educational Trust, a registered charity that works in the field of genetics, assisted conception, embryo/stem cell research and related areas, includes the genetic aspects of autism. He addressed the question

Is autism a disorder? Is autism an identity?
Autism is a disorder with its roots in psychopathology.
The idea that autism is not a disorder is quite recent and seems to derive from three trends.
Expanding the range of what constitutes autism makes the concept of autism less coherent and less useful. This has happened with other psychiatric disorders as well.
Redefining normal has made us lose sight of what it means to be a functioning social being.
There is an assumption that identifying negative aspects of autism entails a moral judgement on the autistic person rather than a medical judgement.

 

Consequences
There have been changes to the law on disability rights and benefit entitlement.
People have been unfairly taken off benefits.
But broadly defined clinical categories are not trusted by government. We need to re-establish boundaries.
We need to defend the pejorative medical judgement that autism is a pathology with disabling aspects.
It is important to seperate moral and medical judgements. Ipseity is more than your health.
Mental health is part of ipseity.
Autism is part of mental health.
Autism exists as a medical condition.
Can it also be an identity.

 

Conclusion
Treating autism as a difference which is valued for itself leads to some interesting ramifications.
In particular should identity affect our judgement?
If I as an autistic person say something about autism should I be believed because of who I am?
That is a kind of ad hominem in reverse.
I deserve to be challenged on the strength of my ideas, not upon the strength of who I am.

In the discussion that followed I pointed out that some commentators had made moral judgements in the other direction. Barnbaum cites Hobson, who argues that without empathy one cannot be part of the moral community. Humanity is not about essential intrinsic qualities which we must possess. It is created out of our relationships with other people. We become persons when we recognize the personhood of others. If that ability is seriously impaired, as in autism, then that person cannot be considered to lead a fully human life.

Starr had an admirably pragmatic solution to the question. Once you are born you are part of the human race. No question about it. But this sidesteps the issue. What about those like Hobson who do question it? Perhaps people are asserting autism as identity in order to defend themselves against these pejorative moral judgements of autism?

I found his presentation stimulating and challenging. And Starr was right to ask whether, if he had not identified himself as autistic, it would have made a difference to how we received his arguments? Or as Murray might have put it, “What role had we individually and collectively assigned to Starr in the narratives of autism that were unfolding in the Royal Academy on World Autism Day?

Autism, Ethics and the Good Life: Narrative and Representation

Yesterday I described the introduction to a full day conference on Autism, Ethics and the Good Life. It was a very full day as the Conference Programme makes clear. So full that I am going to need a series of posts to even attempt to do justice to the richness of the arguments that were presented. So I am going to post individual blogs for each speaker and attempt a summary at the very end. Wish me luck. All these guys are so much wiser and smarter than me. Rather than sitting on the shoulders of giants I am hanging on to their coat tails.

Stuart Murray spoke after the break. He has an autistic son and has brought his own expertise as a professor of English Literature to bear on the question of autism. He spoke about the ways in which texts that purport to tell us about autism may also tell us about the people writing them. In my case I am writing up notes based upon the content of Murray’s talk, but framed by my previous reading of his book, Representing Autism: culture, narrative, fascination. (Liverpool University Press 2008)

Autism Narrative and Representation

Narratives do not just tell stories. We use them to interpret our experience. When we read other people’s narratives we should be aware of the interpretation that they are putting upon experience.

Narratives concerning autism are powerful and diverse.

Autobiographies by people like Temple Grandin and Donna Williams have a narrative that tells of triumph over the negative impact of autism while simultaneously celebrating autism’s positive impact on their ability to lead a good life.

But many narratives are written by people outside the spectrum and their assumptions deny the possibility that autistic people can lead a good life.

The Diagnostic and Statistical Manual of Mental Disorders (DSM) published by the American Psychiatric Association (APA) assumes that autism is a deviation from the norm (i.e. the medical definition of normality) and fits a deficit model. Autistic people are missing or  have malfunctioning versions of mental modules that are necessary to function as a normal human being. People using the DSM see what they are asked to look for. DSM criteria for developmental disorders are really ways of defining what a normal good life is in childhood by excluding those who fit the criteria from the good life.

There are other narratives in autism. Some of them are visual. fMRI scans are now de rigeur in most reports on autism research. They are pictures that speak to us in metaphors. Does this coloured section of the brain represent autism? fMRI scans suggest that we host autism in our brains. It is an internal feature. Brains are “hard-wired”  for autism in a cultural analogy with computer hard drives.

[And it is a simple matter to take the analogy as something real and imagine that our brains do work like computers, instead of realizing that computers are at best very limited attempts to emulate the working of our brains. Nevertheless the computational theory of mind exerts a powerful influence. See any book by Pinker or Dennett for examples of this particular narrative. ]

Moving away from machines, Murray considered the work of Simon Baron-Cohen. For SB-C  reaching a statistical cut off point for autism (e.g. his own autism quotient) is not sufficient for a diagnosis. Does one’s “autism” thus defined and delineated have a negative impact on  one’s ability to lead “the good life”? Can autism exist without suffering and disorder? Suffering is not mentioned in any of the diagnostic criteria but it is integral to our understanding.

Are there narratives about autistic people who do not suffer?  Can you be happy and autistic? And why should we pathologize autistic suffering? Suffering can be normal; e.g.  mourning our loved ones.  Is their unhappiness evidence of a disorder that we need to cure while our unhappiness is evidence of our humanity? That is some narrative!

Seeing autism as inherently disabling can seriously skew even scientific  narratives. Michelle Dawson has investigated the ways in which autistic abilities are described as side effects of impairments.

“while we know autistics process information atypically, very little thought has gone into how to fairly assess their abilities. In fact there is so little understanding of what autistics do well that their strong abilities are often regarded as dysfunctional. “

Some narratives are dangerous as well as misleading. Discussions of the relationship between criminality and autism ignore the fact that autistic people are more likely to be victims of crime. Rare but well publicized cases of autistics committing crimes reinforce the notion that autism=loner=psychopath. Murray finished with the narrative of Nicky Reilly, an autistic youth who was drawn to Islamic fundamentalism and injured himself (and nobody else) in a failed attempt to become a suicide bomber.

Murray ended by inviting us to draw our own conclusions from this particular narrative. My conclusion was that this kind of narrative invites us to believe that autistic people present a particular danger that precludes them from participating in the good life. Not only do they need protecting from themselves. But we also need protecting from them.

Narratives can be powerful and diverse. And some, like this one, can be dangerously wrong and need to be opposed.

Autism, Ethics and the Good Life: an introduction

Monday 2nd April was World Autism Day and to mark the occasion I attended a conference at the Royal Academy entitled Autism, Ethics and the Good Life. The conference was convened by Pat Walsh, Centre of Medical Law and Ethics, King’s College London and Professor Francesca Happé, Institute of Psychiatry, King’s College London, with support from the British Academy. The demand for places was such that the conference had to relocate from the British Academy to a larger venue at the Royal Academy. The programme was impressive. All of the sixteen speakers and chairs had a professional engagement with autism. Eight had a familial connection: five parents, one grandparent and two diagnosed with an autistic spectrum disorder. Additionally, one speaker declared herself to be the parent of a child with severe cognitive impairments.
Franscesca Happé is a professor of cognitive neuroscience. She delivered the opening lecture on the current state of the science of autism. The remarkable thing about her lecture was that she was able to give very few definitive answers. Despite the wealth of recent research most of her lecture could have been delivered relatively unaltered five or even ten years ago. Apart from mentioning her own interest in the fractionality of the triad, of which more later, this was a consensus report that few could argue with.

Diagnosis
Autism is diagnosed on the basis of observable behaviour but this behaviour changes over time and there are no cut off points. Behaviours are continuously distributed.
There are no biomedical diagnostic markers.
Boys are more likely to be affected than girls.
Clinicians can reliably distinguish Autistic Spectrum Disorder but this is not the case for subgroups within the spectrum.
Causes
There are no firm findings on environmental causes although prematurity, parental age and medication in pregnancy have been implicated.
Twin studies suggest that Autism is strongly genetic but the evidence for particular genes is not clear cut. Some genetic disorders are associated with autism; e.g. Fragile X and Tuberous Sclerosis. A number of genetic differences have been found in families with a history of autism. In families with no previous history of autism a variety of de novo mutations have also been found.
Happé did not have time to discuss this in great detail. I recommend the introduction to The Genetics of Autistic Spectrum Disorders on the NAS website by Bhismadev Chakrabarti of Reading University and the Autism Research Centre at Cambridge.
Outcomes
Very little is known about the effect of aging.
Outcomes are hard to predict because of the spontaneous improvement in symptoms that occurs over time.
Studies of outcomes for specific interventions are difficult to evaluate for the same reasons.
We know that education works but do not have random controlled trials to prove it.
Is normalization a valid aim? What if you take a happy, aloof child and raise their social awareness to a level that that exceeds their social competence, causing unhappiness. Is that a successful outcome?

With this last point Happé strayed beyond the state of science to the philosophical questions that ought to inform the science and did inform the rest of the conference. She concluded by inviting us to consider

Priorities for Research.
Genetic research takes the lion’s share of the funding because autism is seen as primarily a genetic disorder. Genetic research offers the prospect of finding the causes of autism and possible therapies or even a cure. A cure seems unlikely given the number of genes involved along with the complexities of gene/environment interaction. But the drive to discover reliable genetic markers for autism may lead to genetic counselling and screening, pre-implantation genetic diagnosis and the offer of abortion. Even if it does not come to that we need to discuss the ethical issues that such a possibility poses precisely because those are the same ethical issues that should inform our decisions about setting our priorities for research.

Tim Cadman, a psychologist with a PhD in Ethics took up the baton at this point with a lecture on ethical issues in autism. Rather than express a particular point of view, he delivered a survey of the issues to addressed by subsequent speakers and did an excellent job in my opinion. It certainly made the rest of the day easier to follow.

Reproductive Technology
Improvements in reproductive technology assist women in controlling their own fertility and enable parents to make informed choices to improve the well-being of their children, e.g. using preimplantation genetic diagnosis (PGD).
We are not yet in a position to offer genetic screening for autism but the issue has been raised and aroused objections from autistic people.
Does it imply  a value judgement on the quality of autistic lives?
Behavioural Interventions
These are powerful techniques that claim to make fundamental changes to people’s behaviour. But are those people, usually children, able to give consent?
Are the behaviours intrinsically wrong or do they speak more to society’s attitudes?
What if we are improving functioning at the expense of emotional well-being?
Medical and Social Models of Disability
Is Autism a disorder or a difference?
The medical model states that autism is inherently impairing and needs remediation.
The social model argues that impairment need not equal disability. Disability is imposed upon impairment by society.
Cadman suggested a more nuanced approach. Autism is a cluster of difficulties, not all of which require intervention.
Requirements for eye contact vary across cultures. It is not a problem in itself. But self harm does invite intervention.
What is a good life?
Defining a good life depends upon one’s theory of well-being.
Are there objective goods that apply to all?
Should we consider subjective goods in which on balance a person’s desires for a good life are met?
Objectively we might decide that someone did not enjoy a good life because they suffered from an intellectual impairment. We may consider their life impoverished by this but what if they are happy? Subjectively they enjoy a good life.
Looking at autism we may decide that social impairment affects well-being by making friendship difficult. But if a person does not seek friends is that a problem? Some autistic people do seek friendship but we should not confuse being alone with being lonely.
Research
Should we prioritize scientific research into causes that may assist future generations or does inter-generational justice demand that we fund interventions that will help autistic people now. (This relates to my previous post about priorities for autism expenditure and I am grateful to all the speakers at this conference who helped to clarify my thinking on the subject.)
One way forward is to democratize the process. Agreement may not be possible. These are complex issues with diverse opinions. All voices should be heard.

The discussion that followed focused mainly on the issues raised by Cadman. Happé was challenged on the validity of RCT trials in education by someone who thought that qualitative research was more important. She was also asked whether it was possible to separate the social and communication difficulties and quizzed about the third element in the triad – lack of imagination. Happé responded by reminding us that the original triad spoke of impairments in social understanding, social use of language and social use of imagination. It was possible to separate them but they were best understood in a social context. This reminded me of an observation by my son that he is only autistic around other people and not when he is on his own.
The discussion around Cadman’s presentation was very practical.

  • Whatever its merits or demerits, the medical model of disability did confer rights under the law.
  • Regarding inter-generational justice, research to establish more precise categories may lead to more precise interventions for existing autistics.
  • Even self harm has a social nexus. Under the social model external stress, not internal pathology, leads to self harm.
  • Should we even be discussing PGD if a genetic test is so unlikely? The response was “Yes” because the desire for a genetic test was driving research priorities and taking money from other potentially more productive areas, including questions raised by the social model.

All this (and more – my notes are incomplete) in the first ninety minutes before the coffee break! This was shaping up to be one of the most interesting autism conferences I had attended. And there were still six hours and ten more presentations to go. I will attempt to summarize the rest of the conference in my next post.  Rest assured. It did not disappoint.

The Myth of Autism Part 2

The Myth of Autism is an ambitious work that seeks to encompass three broad areas of enquiry.

  1. The social and cultural factors that influence our beliefs about childhood: Timimi et al.  concentrate on what they call “the cult of child development” and how it informs our child rearing practices and shapes our expectations for adult outcomes.
  2. A critical review of the scientific literature on autism.
  3. Recent political and cultural developments in Western society which form the context for our current understanding of the autistic spectrum.

The lead author, Sami Timimi tells us in the Preface that the science of autism is so unsound that it will be judged as a dangerous pseudoscientific fad, comparable to phrenology and eugenics.  Timimi acknowledges that this view is controversial and likely to be unpopular both with parents of autistic children and with autistic adults. He concludes that, “there is no such thing as autism and the label should be abolished.”

But this is followed by a statement a few pages later in the Introduction that, “If we believed that our position would have only negative effects on those with the label we would not have written this book.”

I find this incredible. If the “autism industry” they describe had no basis in science and was no better than phrenology or eugenics how could Timimi et al. not publish? Are they seriously arguing that we should judge science primarily by its social consequences even if that means giving the pass to pseudoscience that serves a useful purpose? That is the logic of their words but they seem oblivious to this contradiction. I think their intention is to soften criticism from the autism community by showing sympathy for our situation. But they do so at the expense of clear thinking.

From the outset the authors advise us that “Readers should be aware that we are not about to ask you to digest the umpteenth rehashing of the autistic spectrum theme, but are inviting you to dissect it, apply critical appraisal to the current literature and think through the implications of whatever model we choose as an ‘explanation’ for the diverse set of behavioural presentations currently being categorised as ‘autism’..”

I checked the References and found over 300 citations taking up 22 pages. Judging from the titles less than half these citations referred directly to autism. That in itself is not an issue. The authors are open about their intention to place their discussion of autism within a broader historical, economic and sociological context and it is right that this should be fully referenced. But the reference to current literature is an issue. According to Timimi, “We met in York in November 2006 and from here work started on the book in earnest.” The literature may have been current then but I counted only twenty five references dated 2007 or later. Six of these were books or articles by one of the authors. Only three of the twenty five, all from 2007, mentioned autism and one of those was a literature review.

This is a real weakness. Since 2007 some important books have been published that speak directly to the authors’ concerns. Grinker (2007) published an anthropological account of autism that examined its social and cultural context across the globe and was not just restricted to western societies. Murray (2008) wrote an account of the cultural discourse on autism in novels, plays and films. Barnbaum (2008) produced an original, if flawed account of the ethical dimension to debates about causation and cure. Feinstein (2010) has produced an important history of autism that draws strength from its face to face interviews with many of the pioneers of autism research. It also reveals the fierce divisions within the research community that give the lie to arguments about a hegemonic approach by an autism establishment of the type suggested by Timimi et al.

In the field of research Soulières, Mottron, Dawson and Gernsbacher are among those currently challenging the idea that all autistic features are necessarily defects. Tony Attwood has openly criticized DSM-IV criteria for Asperger Syndrome at the NAS International Conference in 2005. Eric Schopler, who developed TEACCH as a model for service delivery to autistic people in North Carolina and was one of the first to challenge the refrigerator mother ideology, disputed the claims of Ivor Lovaas that Applied Behaviour Analysis was the only scientifically proven treatment for autism. See Cohen 1998 for a summary of the dispute.

The primary educational goal of TEACCH is to increase the student’s level of skill. Recovery is not a term used in this system. While the Lovaas program is based on the premise that the child must overcome his autistic characteristics so as to adapt to the world around him, in TEACCH the child is provided with an environment designed to accommodate the characteristics of autistic children.

Although both men are now dead the argument still resonates, especially in the campaigns of parent advocates to make ABA mandatory for the treatment of autism and to oblige health insurance policies to pay for this treatment.  Timimi et al ignore these debates.

The history of Autism

The book not only fails to keep up to date with current thinking about autism, it also reveals a limited understanding of history. The authors go back to the Middle Ages when discussing the concept of childhood. But they delve no further than Bleuler in 1911 when considering the existence of autism. This ignores Frith’s exposition on the Holy Fools of Russia in “Autism; the enigma.” Then there is Itard and the Wild Boy of Aveyron from 18th century France. Closer to home, Downs published an account of children who were arguably autistic in 19th century London (see Treffert) and Shattock and Waltz found similar cases when trawling Victorian health records.

There is a constant message that case histories are privileged over data. Data cannot be trusted because it is collected in order to justify the pre-existing bias of the scientists. This bias derives from the priorities of the society that pays their wages. What is not clear is how Timimi et al have escaped from this straitjacket. Have they found the truth or are we just being invited to select a more meaningful narrative? Timimi talks of his own clinical practice in which therapy is based on “more meaningful narratives … than those attached to the superficial focus of ‘symptoms’ and ‘diagnosis’. By what measure are these narratives to be judged. Timimi et al. argue that the claims of science have to stand up to Popperian tests of falsification.   Do the same standards apply to personal narratives? Having read the three personal narratives with which the book opens, the answer is obviously, “No.” There is a serious mismatch here. We are invited to dismiss the science of autism on scientific grounds and replace it with personal narratives that cannot meet the same tests. This is a catergorical mismatch that places us firmly in the post modernist mire.

Autism: a disability or a disadvantage?

Timimi et al dismiss the autism rights movement in six pages, in part because in their view it accepts the monolithic spectrum handed down by the autism establishment. They offer no citations from the work of anybody on the spectrum. In fact autism rights campaigners are far from monolithic in their views. Some autistic self advocates are influenced by the gay rights movement. There is a reason for this. When the psychoanalytic dominance of autism theory was successfully challenged by those who argued that it was an organic condition and not the result of bad parenting Skinner’s theory of operant conditioning was proposed as an alternative. Ivor Lovaas held that early, intensive behavioural therapy could reverse autism. Timimi et al. discusses Lovaas but, in a book where gender looms large it is surprising that they do not comment on a previous study by Lovaas to reverse homosexuality in boys at a time when it was still regarded as a psychiatric disorder. This fact was not lost on the early pioneers of the autism self advocacy movement who looked to the emerging gay rights movement as a model for their own efforts to have autism regarded as a difference rather than a disease.

Others look to campaigns by disability rights activists.  The social model of disability has attracted support from campaigners who understand that that if society were to make accommodations to meet their needs, creating autism friendly services for example, we could do much to mitigate the drawbacks that come with autism. Then there are those like Ros Blackburn who are open about the disabling impact of autism on their lives and would welcome medical interventions if they were available.  This should not be taken to imply that the autistic community is divided into separate camps. The arguments are more nuanced than that.

Rita Jordan attempted to tackle this in an article in Communication, the members’ magazine of the National Autistic Society. It is the one issue that is missing from my files (Winter 2007) but if memory serves she proposed the term Autistic Spectrum Condition in order to accommodate those who see autism as a way of being and not a disorder. Some people’s autistic condition might be so disabling as to necessitate a lifetime of care. Others might manage most of the time and only need support at key moments of crisis or transition in their lives. While others need not be considered disabled at all if only other people were aware of and respected their difference. This drew criticism in the next issue from autistic people who were leading successful lives and would not count as medically disabled under such a definition. Nevertheless they had to work very hard to fit in and cope with bullying, exploitation and the constant stress. Another autistic person referred to his problems with communication and short term memory along with anxiety, sensory overload and repetitive behaviour, all of which led him see his autism as a deficit. I believe Rita Jordan was right to tackle the question. I do not think we can properly judge the success of her endeavour on the basis of a thousand word magazine article. I do find it significant that a leading figure in the alleged “Autism Establishment” as characterized by Timimi et al. was sensitive to the aspirations within the autistic community and felt it right and necessary to respond in a magazine read mainly by parents who make up the majority of the membership of the NAS. Similarly, the concepts of Neurodiversity and Neurotypicality which were developed by autistic people are increasingly used in professional discourse about autism.

The Science of Autism

Timimi et al. are at their most interesting when they challenge the nature of autism science. They place great emphasis on the importance of case histories and personal narratives. Indeed we are treated to 25 pages of the authors’ own personal narratives (pages 15 – 41) before the book properly begins. Their critique of the science of autism is really a critique of social science in general. It is ideologically driven and heavily influenced by the physical sciences in its attempt to “measure physical and mental competence” (page 91). Timimi et al accept that science is governed by Popper’s principles of hypothesis making and falsifiability. But this narrow view of science is not universally accepted either by working scientists or philosophers of science.  It is not even accepted by Popper himself, who, according to Rose (2005) had to modify his position when it became apparent that, by his criteria, Darwinian evolutionary theory was unscientific.

But it suits Timimi et al to define science so narrowly in order to contrast “true” verifiable hypotheses of real science with the pseudoscience of autism that fails the Popperian test. They attack the data because of its alleged weakness. But they also attack the idea that any data about autism can be reliable. This is because of the ideological construct they place upon autism science. If they can show historical, economic and sociological influence on scientists and clinicians this is enough to invalidate the science and leave the way clear for their own personal narratives.

For people who display their left wing credentials so prominently throughout the book this shows incredible ignorance and misunderstanding of socialist theory of science. When Hessen delivered his paper on The Social and Economic Roots of Newton’s Principia in 1931 he was not suggesting that Newtonian physics should be dismissed because it was influenced by the socio-economic demands of the time. Rather it should be understood within that sociological framework. Timimi et al pose a false dichotomy between true science that is evidence based and false science that is ideologically led. In fact all science is influenced to some extent by social and historical factors and has to be understood in that context.

Their specific claims about the data are not always rigorously argued. They are at pains to demolish the myth that autism is genetic while ignoring the fact that in 1993 Simon Baron-Cohen and Patrick Bolton published a book, Autism the Facts, which clearly stated that on one model, “The final common pathway,” genetics was only one contributory factor alongside viral infections, birth and pregnancy complications and other causes as yet unknown. Timimi et al seek to discredit twin studies as the major pillar of the hypothesis that autism has a genetic content. But they only consider five papers published between 1977 and 1996. Yet, the first decade of this century produced over thirty twin studies.  Some of them are products of the Twins Early Development Study (TEDS)   TEDS researchers recruited 15000 families after contacting all the parents of twins born between 1994 and 1996 in the UK. Fifteen years later 13000 families are still participating and 5000 have provided DNA samples. This study has generated a number of papers and goes a long way towards meeting the objections of Timimi et al.

They question the reliability of parental reports of zygosity in the twin studies they review. As early as June, 2000 TEDS found that parental reports were reliable.  They also object to selection bias. Twins are recruited because one of them already has a referral. Researchers know that one is autistic. They assume a genetic basis and are predisposed to “see” autism in the second twin. But TEDS recruited thousands of twin pairs without reference to diagnosis. They came across their autistic twin pairs by accident as it were.

The issue of shared environmental experience or the equal environmental assumption (EEA) is another matter. Timimi et al suggest that we cannot assume an EEA between MZ and DZ twins, still less between twins and singleton siblings. And they are right. TEDS has confirmed this in a series of papers that are not directly concerned with autistic traits. With hindsight it is only common sense that twins have a different environment to their siblings. The shared environment of the womb is denied to singletons. After birth identical twins experience a different upbringing to their non-identical and singleton siblings.

Common sense is one thing. But now we have some data.  A recent American study claimed that, “Susceptibility to ASD has moderate genetic heritability and a substantial shared twin environmental component.” This paper is not without its critics but I include it because it lends weight to the arguments of Timimi et al. Why didn’t they include it?

I have some sympathy with their criticism of the science around autism and mental health issues in general, especially the perennial claims of genetic researchers that they are close to finding a cause and hence a cure for autism.But the autism rights movement that they deride has made some of the most trenchant criticisms in this area without denying that autism exists, that it can be disabling and that people with autism are entitled to support and services.

I do object to the muddled thinking and poor research in Timimi et al. They do not do their argument justice and if taken seriously are likely to set our movement back. But the authors sacrifice any claims to be taken seriously when they indulge in personal attacks on autism researchers. Simon Baron-Cohen is accused of McCarthyism over the questions in the Childhood Asperger Syndrome Test. They accept the criticism of Professor Gillberg who risked his professional reputation and career rather than breach confidentiality agreements with reseach subjects and hand over his data to anti-psychiatry campaigners influenced by the Church of Scientology. All this is documented in the British Medical Journal. The authors provide no sources for their uncritical acceptance of the attack on Gillberg.

Worst of all is when the authors commit egregious errors like stating that John Wing was Lorna Wing’s father when he was in fact her husband. They demean themselves with the suggestion that Lorna Wing embraced autism as a result of her having a severely handicapped daughter and discovered the milder form, Asperger Syndrome when she gave birth to a less handicapped child in 1981. This is an even more serious error. I do not know which is worse, mistakenly claiming that Dr Wing had a second child in 1981 (she did not) or suggesting that she made up the science to suit her personal circumstances.

In conclusion the authors raise some important questions but provide disappointing answers. The Myth of Autism is marred by dated research, confused arguments and is potentially libellous in places. Avoid this book.