Category Archives: Society

Should Robots Pay Taxes?

A worker makes technical measurements with robots on the carbon chassis at the serial production BMW i3 electric car in the BMW factory in Leipzig on September 18, 2013. REUTERS/Fabrizio Bensch

The growing attraction of populist ideas and parties, sometimes of the left, but more often of the nativist right is in part fuelled by the alienation of those left behind by globalization. The rise of the robots threatens further disruption. Perhaps we need to rewrite Asimov’s Laws of Robotics for the 21st century.

  1. A robot may not injure a human being or, through inaction, allow a human being to come to harm.
  2. A robot must obey the orders given it by human beings except where such orders would conflict with the First Law.
  3. A robot must protect its own existence as long as such protection does not conflict with the First or Second Laws.

Now Bill Gates has proposed a Fourth Law in an interview with Quartz Magazine.

4. The robot that takes your job should pay taxes.

Gates’ idea is straightforward. There are plenty of jobs that machines cannot do, jobs that require empathic humans, especially in the caring professions. With an aging population we need more of these jobs. But how to pay for them with a declining workforce and the consequent decline in revenues from income tax? Taxing the robots gets round this. They would still offer significant savings to employers. Robots do not need salaries, pensions or healthcare plans. But governments need tax revenues.

There is also the human cost of disruptive technology. Rapid change might create wealth in one sector. But it frequently destroys wealth and jobs in the disrupted sectors. Gates thinks that a robot tax might disrupt the disruptors by slowing down the take-up of technological change so that society has time to adjust and forestall the mass unemployment and deskilling of whole communities that we can see today in America’s Rust Belt or the old industrial towns of the UK.

Gates is less clear on how such a tax could be implemented but he remains optimistic.

There are many ways to take that extra productivity and generate more taxes. Exactly how you’d do it, measure it, you know, it’s interesting for people to start talking about now. Some of it can come on the profits that are generated by the labor-saving efficiency there. Some of it can come directly in some type of robot tax. I don’t think the robot companies are going to be outraged that there might be a tax. It’s OK.

I think he is being over optimistic there. When has any industry ever welcomed a new tax? In fact the International Federation of  Robotics has welcomed a recent decision by the EU to reject a robot tax while proposing an ethical framework for their introduction.

Gates is, to his credit, a billionaire philanthropist who is prepared to put his money where his mouth is by funding healthcare programmes, especially those promoting vaccines in poor countries with high infant mortality and projects to tackle climate change. According to Wikipedia the Bill and Melissa Gates Foundation had an endowment of $44.3 billion as of 31 December 2014. Gates has donated $28 billion to the foundation. Warren Buffet is another generous donor, effectively match funding the foundation’s charitable donations year on year. As a result the foundation had disbursed an average in excess of $3 billion every year from 2009 to 2014.

It is ironic that this wealth is, in part, derived from the success of Microsoft in pursuing an aggressive form of tax efficiency that some have characterized as tax avoidance amounting to US$4.6 billion a year. And Gates was not so keen on a robot tax when his own robots were taking over the world. OK, his robots were beige boxes running Microsoft office and other software. But this software was definitely a disruptive force to the white collar workers whose skills it replaced.

Bill Gates’ thinking is influenced by his position. He is a technocrat whose life experience is one of developing technological solutions to problems and seeing them implemented, usually at a profit to himself and in fierce competition with rivals. Thus Microsoft achieved a near monopoly in things it was good at like software licencing, was slow to appreciate the potential of the internet and almost missed out completely on mobile technology. Whatever the outcome in terms of success or failure, he took decisions based on market share and profitability, not on measures of social justice or out of regard for civic responsibility. Bill Gates has shifted his priorities and is now seeking solutions to social problems. There is no reason to believe that the present generation of technocrats share his vision or that they will behave any differently to the  “old” Bill Gates. Remember when Microsoft was the Great Satan and Apple was cool before we learned about conditions in the Apple factories in China? It is not just in the third world or the newly industrializing countries either. Amazon have nothing to boast about regarding their tax records in the UK or the conditions of their workforce here.

Gates thinks governments have to take action and hold companies to account because he recognizes that competition  precludes individual businesses from going it alone as ethical trailblazers. Here again he is being optimistic. The economy of many countries is dwarfed by the size of some corporations. According to the IMF in 2017 only 85 out of 191 selected countries had a GDP in excess of $100 billion. There were 50 companies worldwide whose revenue for 2017 exceeded $100 billion. Incidentally, Microsoft did not make the list. But its $4.6 billion annual tax “savings” exceeded the GDP of 25 countries on the IMF list.

When first world economies struggle to collect tax owed by global corporations and some of the most powerful economies in the world are complicit in tax avoidance, (Britain operates its own tax havens via its crown dependencies) and many countries are poorer and less powerful than the companies they seek to police, I have to conclude that Bill Gates eminently sensible proposals to tax robots will remain a utopian dream until we can find a way to collect the taxes that currently go uncollected. These are estimated at $600 billion worldwide with losses of at least $200 billion being borne by the newly developing countries.

So many of the worlds financial transactions take place online, everything from everyday retail transactions to the operation of complex financial markets. And in many cases tax is part of the automated process. We cannot avoid or evade VAT on purchases or PAYE for income tax. It should not be beyond the wit of the technocrats to devise similar automated procedures for collecting corporaton tax. The question is, do they have the will to disrupt the disruptors?

 

 

A Tale of Two Headlines

 

Frontpage1On Tuesday 19th July the Northwest Evening Mail was dominated by the news that the renewal of Trident guaranteed the future prosperity of Barrow-in-Furness, where BAe Systems will build the Successor programme of Trident submarines.

The project, which is estimated to cost £31 billion, will bring new buildings and roads to Barrow. 5,000 extra jobs are expected on top of the 7,000 people who already work in the shipyard and the knock on effect for property prices and other businesses in the town will make life better for many people.

But the day after the announcement anFrontpage2other front page headline in the Northwest Evening Mail suggested that not everybody  benefits from the Trident programme. The Borough Council are facing another round of cuts in the service of the government’s austerity programme. These cuts will inevitably fall upon the poor, the sick, the disabled; all those people who depend upon council services. As well as a food bank we also have a soup kitchen for those who cannot always afford the energy to cook a hot meal.

When I first moved to Barrow, thirty-three years ago the shipyard dominated the town even more so than today. 14,000 people worked in the yard, including thousands of white collar workers who drew up the plans and drawings for the vessels the yard built. There was a thriving apprenticeship scheme. It was hard to find a household without at least one family member employed by Vickers Shipbuilding & Engineering Ltd, the company that ran the yard in those days. When the whistle sounded for “Vickers Out” thousands of workers would stream out on foot and on bikes filling the entire road.

Since then computer aided design has devastated the prospects for white collar employment. High tech production techniques and new employment practices such as subcontracting rather than direct employment have affected the blue collar workforce. The closure and demolition of the apprentice school may have been more symbolic than real in its consequences but the message to young Barrovians was clear. You could no longer rely upon the shipyard for your future.

House prices tumbled as Boom Town Barrow went into decline. My wife and I were trapped by negative equity for years as skilled workers were selling up and moving on in search of employment. Young people who could get to university did not return to bring their skills and enterprise to the town.  The 2011 census revealed a 4 per cent decline in population at a time when the overall population of England and Wales was rising at record rates.

Throughout this time the shipyard has survived and prospered thanks to the government funded Trident programme. It is now a profitable part of aerospace giant, BAe Systems. And those Barrovians who were able to keep their jobs or acquire the skills required for the new jobs have benefited from the Trident programme. But I am left with the feeling that, where once the shipyard was a unifying influence that brought prosperity to the whole town, now it seems to divide the town. The shipyard is booming again thanks to massive government expenditure. Meanwhile government cuts are devastating the lives of those least able to benefit from this boom. The high street is dominated by charity shops, Poundsavers and Poundstretchers, and other discount stores. And it could be argued that the people who use them are in effect subsidizing the jobs of their more fortunate neighbours via cuts to social care budget.

This divide was succinctly illustrated by the front page of the Evening Mail on Wednesday 7th September. This issue celebrates 30 years of submarine production at the Devonshire Dock Hall, the largest structure in Barrow and soon to be dwarfed by the buildings that will house the Successor programme. But the main headline tells a more shocking story.frontpage3

Crimes of violence against the person are as bad as Manchester and worse than Liverpool at 20.5 per thousand people. Self-harm is also way above the national average at 358 hospital admissions per 100,000 people. Problems with alcohol and smoking related deaths are also above the national average. There is a well-established link between figures like this and poverty. Barrow, despite thirty years of prosperity based on the Trident Programme and looking forward to a similar period of prosperity during the Successor Programme is one of the poorest, most deprived boroughs in England.

Personally I am opposed to Trident. Weapons of Mass Destruction are immoral whoever wields them. And there are plenty of other infrastructure projects around transport, renewable energy and carbon capture that would benefit from similar levels of investment and guarantee jobs for years to come. There is also an argument that being obsessed with great power status and possessing a so-called independent deterrent detracts from a proper debate about the role of Britain in the world and the sort of armed forces we need to carry out that role. For now that debate is over. Parliament has approved the Successor Programme. Even if we get a Labour government committed to abolishing our deterrent, it will be well nigh impossible for them to extract us from all the contracts, deals and agreements, never mind the horrendous penalty charges that would entail.

We can still learn from the past thirty years. How could such massive expenditure in Barrow lead to increasing poverty and a growing divide between the haves and the have-nots? We may not be in as position to stop the renewal of our nuclear deterrent. But we should strive to ensure that this new tranche of government investment serves to narrow that divide rather than exacerbate it. That is a discussion that ought to find favour with all wings of the Labour movement.

Autism: Challenging Behaviour

Introduction

Michael Fitzpatrick is a retired GP with a profoundly autistic son. Mike is also the author of MMR and Autism: What Parents Need to Know and Defeating Autism: A Damaging Delusion. He usually writes for Spiked Online. But he has asked me to host his review of a recent BBC4 documentary, Autism: Challenging Behaviour. The programme claimed to be a

Documentary exploring the controversy around ABA (Applied Behaviour Analysis), an intensive intervention used to treat autism, by meeting people who are both pro- and anti-ABA.

Applied Behavioural Analysis is a system of instruction devised by Ivor Lovaas that  is based on B. F. Skinner’s theory of operant conditioning. Its supporters are wont to claim that it is “the only scientifically proven therapy for autism.” Here is a typical offering from Families for Early Autistic Treatment (FEAT) in British Colombia, who are part of a campaign to have ABA mandated as a necessary medical treatment for autism in Canada.

Effective, scientifically backed treatment for autism exists (the “Lovaas” Method – a form of Applied Behavior Analysis). Lovaas behavioural treatment for autism is medically necessary and prescribed by physicians because it is the only treatment available that significantly improves this biological disorder. Lovaas behavioral treatment for autism is the most thoroughly documented treatment of children with autism. Scientific studies document a 47% recovery rate from autism and a near 100% improvement rate for children who receive Lovaas early treatment.

In the United States there is a campaign to compel health insurance companies to include ABA as a medical intervention for autism, ABAmaCare if you like. These campaigns are not without controversy. Michelle Dawson, an autistic individual and autism researcher in Canada is perhaps the most eloquent advocate who challenges the scientific and ethical foundations of ABA. She is not alone. But the BBC4 documentary made no reference to Michelle’s critique of ABA.  It followed the more familiar route of human interest documentaries. The case for ABA was made using heart warming individual success stories, balanced by critical remarks from autism experts who questioned its scientific and ethical credentials. No prizes for guessing who won. So thank you Michael Fitzpatrick for eschewing emotional appeal and providing us with this critical review of the documentary.

801221895Autism: Challenging Behaviour

Producer/Director: Fran Robertson

BBC4, 5 November 2013

Fran Robertson’s documentary tells the story of two engaging little boys with autism – Jack aged three, and Jeremiah, four – who attend Treetops school in Thurrock, Essex, the only state school in the country in which the curriculum is based on the intensive behavioural techniques of Applied Behaviour Analysis (ABA). Blonde with an angelic smile, Jack responds with tantrums and projectile vomiting to any food beyond a highly restricted liquid diet. Dark-haired and bright-eyed Jeremiah seems to inhabit a ‘world of his own’ from which his Indian parents struggle to engage him. In the course of the film we follow the attempts of teachers and teaching assistants to overcome these boys’ behavioural and communication difficulties through the techniques of ABA.

The film explores the long-running controversy around ABA through interviews with academic critics and adults who have been diagnosed with autistic spectrum disorders, including one mother who was diagnosed with Asperger’s syndrome following her son’s diagnosis. Early forms of ABA, which emerged from the pioneering work of the Norwegian psychologist Ivar Lovaas in California in the 1960s, were condemned for using punitive ‘aversive’ techniques. Though these have long been abandoned, critics still claim that ABA is dehumanising, seeking to ‘normalise’ autistic behaviours – such as repetitive, self-stimulatory, activities – which are functional for people with autism.

Another area of controversy around ABA – the question ‘does it work?’ – is avoided in this documentary, which tends to take at face value the assertion by campaigners, teachers and parents committed to this approach that it is effective. Much research, summarised in two recent systematic reviews, has failed to provide categorical endorsement. Studies show that while some children with autism benefit from ABA, some do not; some benefit more than others; and some children make progress without intensive behavioural intervention (and to a degree comparable with those who receive it). The problem is that we still do not know how to identify which children are most likely to benefit from ABA and which from other forms of intervention, or what particular aspects of the ABA approach are likely to benefit particular children.

At the end of Autism: Challenging Behaviour, we see Jack cheerfully tucking in to sausage, beans and chips with his mother and Jeremiah playing happily with his parents. But this emotionally manipulative presentation of ABA takes little account of the experience of many parents – that of limited progress despite immense efforts and of disappointment at their failure to achieve the promised outcomes.

The uncritical advocacy of ABA goes even further in a number of episodes featuring the Scandinavian therapist Gunnar Frederickson, who follows in the dubious tradition of campaigners who claim that ABA can achieve “cure” or “recovery” from autism. As British autism expert Rita Jordan has observed ‘the whole ABA movement appears increasingly more like a cult than a science’. Charismatic, dogmatic and sanctimonious – and with a passing resemblance to the rock’n’ roll philanthropist and activist Bono – Frederickson takes the film crew to the scene of his greatest triumph over autism. We meet a 16 year old boy, treated by Frederickson at the age of three when his parents were told he was ‘unlikely to speak’. He is now ‘indistinguishable from his peers’ and a member of the Swedish badminton team. He lives with his happy family in a beautiful, spacious, white house (in stark contrast to the dark, cramped and impoverished conditions in which we see some of the British children with autism are living). While any sceptical observer would want to know more about both the original diagnosis and the current level of functioning, it is the wonder cure that makes good television – and guarantees continuing demand for ABA, despite the lack of scientific evidence for its efficacy.

It is important to note that some proponents of ABA – such as Professor Richard Hastings – repudiate both the ‘normalising’ and the ‘cure’ agenda: ‘just because some individuals or organizations argue that ABA can lead to some sort of recovery from autism does not mean that this is what ABA is all about.’

Michael Fitzpatrick 6 November 2013

Further reading:

Howlin P., Magiati I., Charman T.(2009). Systematic review of early intensive behavioral interventions for children with autism. American Journal on Intellectual and Developmental Disabilities. 114(1), pp. 23-41.

Spreckley M., Boyd R.(2009). Efficacy of applied behavioral intervention in preschool children with autism for improving cognitive, language, and adaptive behavior: A systematic review and meta-analysis. Journal of Pediatrics. 154(3), pp. 338-344.

Prof Hastings blog: http://profhastings.blogspot.co.uk/

Michael Fitzpatrick, ‘The Lovaas cure: ABA is it a fad?’ in Defeating Autism: A Damaging Delusion, Routledge, 2009, p138-141.

Why are Wakefield’s views on MMR still news?

Wakefield ipaper

Today’s i Paper and Independent carry a front page story that gives Andrew Wakefield everything he could wish for. Two days ago I blogged a piece on Wakefield’s recent attempt to capitalize on the measles outbreak in Wales. He issued a statement on Age of Autism, a blog that reflects the views of its sponsors, US organizations like Safe Minds and Generation Rescue. For them autism is a man made epidemic caused by vaccines and other environmental toxins. It can be cured by a combination of diets, vitamins, detox programmes and other “alternative” (i.e. unproven) therapies. Needless to say these ideas have no support within mainstream scienceofautismscience. The recent booklet, The Good and Bad Science of Autism, provides a clear and accessible rebuttal in an excellent guide to the current state of our knowledge and understanding of autism

It speaks volumes that Wakefield is now dependent on media outlets like Age of Autism to get his message across. He is a marginal figure, reduced to touting proposals for a reality TV show, “The Autism Team” to US producers, as reported by Mark Hannaford in the Guardian. He still has nuisance value within the autism community. His acolytes continue to repeat the MMR hoax on blogs and other social media. But his days as a mainstream media figure are clearly over.  At least I thought they were until I picked up my copy of the i Paper today.

The article is neither a criticism of Wakefield for being the architect of the MMR scare behind the measles outbreak in South Wales nor a critique of the lies and distortions in his self-serving statement. It effectively gives him the right to reply.

  1. His picture and his words form the headline. The expert rebuttal comes a poor second.
  2. Although the print version of the i Paper concentrates on the single vaccine question, the Independent in print and online gives full coverage to his statement, which is printed in full. This statement repeats the lies that MMR is unsafe and causes autism. Incidentally, the Independent credits its source for Wakefield’s statement as healthimpactnews.com, a “news” site that was set up to promote the owners’ business, selling coconut based products as health foods. It also publishes their views on Darwin, prescription drugs, GM food and vaccines. They oppose them all while defending creationism or intelligent design and alternative medicines and therapies.
  3. Getting an expert to respond to Wakefield’s statements inevitably puts the expert on the defensive and makes him sound less convincing than Wakefield, who is never questioned on any of the dubious statements published without comment. It also gives a false air of legitimacy. This was always the problem in the original coverage of the MMR Hoax. By appearing balanced it gave equal weight to very unequal ideas. Outside of the medical fringe there has never been any support for Wakefield amongst doctors or researchers.
  4. There is an attempt to place Wakefield’s statement in context. But the message comes across that the question of single vaccines versus MMR is a legitimate topic for debate and that Wakefield, despite being struck off for malpractice in relation to research into MMR, has a legitimate voice in that debate.

Libel Reform Under Threat

 

Britain has some of the worst libel laws in the world. They are used to stifle legitimate comment and bully writers who are trying to expose the excesses of the rich and powerful. Simon Singh recounts how:

In 2005, the Saudi billionaire Sheikh Khalid bin Mahfouz sued the American author Rachel Ehrenfeld for publishing Funding Evil, which discussed how terrorism is funded. The case was held in London, because an international businessman such as Mahfouz can claim a reputation in almost any jurisdiction and the book was sold in this country; in fact, a grand total of 23 copies were sold in Britain.

Mahfouz was able to play high-stakes poker with Ehrenfeld and push a $1 million stack of chips on to the libel table. Ehrenfeld and her publishers could not afford such losses as it would have meant bankruptcy, so they backed down, settled early and paid £30,000 damages and £80,000 in costs.

Simon himself has suffered from the same law. He was sued when he accused the British ChiropractIc Association of promoting “bogus treatments” Two years later he finally won his case but then faced a battle to recover his legal costs of at least £100,000. Simon’s case attracted a lot of support. The appeal court judge expressed concern that legitimate matters for public and scientific debate should not be stifled by the law. One result is the Defamation Bill, an attempt to reform the libel law that is close to becoming law. But it is under threat. There is a bid to remove a clause that requires corporations to demonstrate proof of harm and not merely claim damage to their reputations when initiating libel cases. This is important. It raises the bar for rich individuals and institutions that use the threat of libel action to intimidate opponents who cannot match their deep pockets.

English PEN, which strives for freedom to read and freedom to write is part of the alliance promoting the bill. I reproduce their most recent statement below and urge readers in the UK to act to defend the integrity of the bill.

A new threat to libel reform – help us stop the corporate libel bullies libel-reform-campaign-pic

Four days before the Defamation Bill has its final and decisive debate in the House of Commons, we need your support to ensure that the libel reform campaign succeeds in reforming the law

Conservative MP and libel barrister Sir Edward Garnier is trying to remove a clause that would limit companies’ ability to use libel threats to intimidate critics into silence. The amendment was passed with an overwhelming majority in the House of Lords. The attempt to remove this clause will be voted on during debate on the Bill on Tuesday 16 April.

Companies can claim damage to their reputation, but never have to show that damage actually occurred.  The threat of costly legal battles with large corporations is what keeps many journalists, bloggers, scientists and human rights campaigners silent. The bullying of individuals by companies and silencing of whistleblowers has been one of the central concerns of our campaign, and a key area for reform.
Please write to your MP and tell them not to support Garnier’s amendment.

We’ve heard that the Conservatives might back Garnier on this, and that the Liberal Democrats will join their Conservative colleagues, even though restricting corporations from suing individuals unless they can prove harm was a commitment in the Liberal Democrat manifesto. Two parliamentary committees have also supported this reform. Please write to Nick Clegg and David Cameron and urge them to tell their parties not to support Edward Garnier’s amendment, and to make sure the clause on companies becomes part of the Defamation Bill.

Read our briefing for MPs on why this, along with a clear strong public interest defence, would do the most to lessen the damage the laws are inflicting on free and open debate. A Bill without either reform would be a wasted opportunity. Please point your MP towards our briefing at this link when you write to them.

We’ve seen the best of democracy in action – we have forced libel reform onto the political agenda and when politicians have listened to us, we’ve seen the best improvements to the Defamation Bill. Please tell your MP not to support Garnier’s amendment and tell David Cameron and Nick Clegg that the Government should not do so either.
With very best wishes,
The English PEN campaigns team

Adam Lanza: scapegoating is not the answer

My thanks to Michael Baron for this PRESS RELEASE from Autism-Europe.

18 December 2012
Caution over linking autism with school massacre in United States

Numerous media reports have claimed that, Adam Lanza, the young man who killed 20 children 6 adults at an elementary school in the United States on Friday, had Asperger syndrome.

While claims that Lanza had Asperger syndrome (an autism spectrum disorder) remain unverified at this point in time, Autism-Europe urges the wider community to be cautious about making links between autism and violent crime.

On this tragically sad occasion, Autism-Europe’s Director, Aurélie Baranger, expresses “our deepest sympathies for the victims of the massacre at Sandhook Elementary School, their families and the community of Newtown, Connecticut”.

Ms Baranger explains that, “We should understand this tragedy as the act of an individual, not typical of a person with autism.”

“We urge the international community, including journalists and other individuals, to avoid making incorrect assumptions or judgements about people with autism,” she continues.

“As with the rest of society, the vast majority of people who have autism are law-abiding citizens.”

“People with autism throughout Europe, the United States and the rest of the world, already face many barriers and much discrimination. Additional negative stereotyping in the media only leads to further stigmatisation and difficulties for people who have autism.”

“When writing media reports, we urge journalists in particular to take appropriate care to avoid further stigmatising people who have autism,” she continues.

Autism affects around 1 in 150 people in Europe. It is a lifelong disability that affects the development and functioning of the brain. People who have autism experience difficulty with communication, social interaction and often display restricted interests and repetitive behaviours. Autism is a spectrum disorder, which means that the symptoms vary between individuals, ranging from mild to severe.

For more information about autism, please visit: www.autismeurope.org

For more information, and or interviews, please do not hesitate to contact

Aurelie Baranger, Director of Autism-Europe:

Tel: +32 (0)477 70 59 34

Email: aurelie.baranger@autism-europe.org

The media has generally has acquitted itself well in covering the school massacre in Newtown, Connecticut, except in one respect. Faced with the inexplicable horror of a massacre of young children, an explanation has been sought by trying to typecast the perpetrator.

From all accounts it is reasonable to assume that Adam Lanza was shy, intelligent, vulnerable, socially isolated, a “nerd” in common parlance. But it is unreasonable to label him a “Nerd Killer” as one UK tabloid did. Language is important. Calling him a “Child Killer” would have left no doubt about what he did. “Nerd Killer” is a statement about who he was. It suggests that going on a killing spree is a nerd characteristic.The grammatically correct “nerdy killer” is less strong. It does not make nerds seem threatening or dangerous. Instead it suggests that this was an uncharacteristic act.

Similarly, the references to Lanza’s interest in computer games, violent of course, are supposed to mark him out as a potential mass murderer. But a month ago the media were all over the launch of Black Ops II with pictures of happy smiling fans some of whom had obsessively queued for days. Others were in fancy dress as blood smeared zombies. All good fun and generating millions of sales but apparently not millions of deranged killers.

Back to autism, and Lanza certainly looks a good fit for a diagnosis. This has yet to be confirmed. Actually most of the “facts” about Lanza have turned out to be false according to the Guardian. If it turns out to be true does it matter? Not very much. In my opinion, if he had survived to stand trial it should have had no bearing on his guilt and no bearing on his sentence. But it should have been taken into account to ensure that his condition did not disadvantage him in exercising his legal right to a fair trial. And it should have been a mitigating factor in deciding the appropriate custodial regime for such a vulnerable adult. That and no more.

It has even been suggested that Lanza was a Goth. Never mind that he is as unlike a Goth as it is possible to be, Goths, like nerds, obsessive computer gamers and autistic people are more likely to be the victims rather than the perpetrators of violence.

In there eagerness to explain the inexplicable sections of the media have focused on identifiable sub cultures and categories of people in society. see for example the lurid profile of Lanza in the Sun. None of this helps to explain why Adam Lanza acted the way he did. But it does increase the likelihood of bullying and violence against these disparate elements in society. This irresponsible behaviour may inadvertently add to the list of Lanza’s victims.

So why did he do it? I do not know. But I predict that if there is an answer it will emerge from a complex analysis of the circumstances of his life and not from simplistic profiling by  journalists that puts others at risk of retaliatory hate crimes.

A comprehensive list of autism related blogs and responses is available here:

http://lizditz.typepad.com/i_speak_of_dreams/2012/12/gun-violence-and-the-search-for-a-scapegoat-autism-edition.html

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.