A shared life

On Tuesday last week, I spoke to the All-Party Disability Interest Group in Parliament about shared-life communities for people with a learning disability (intellectual disability). This was organised by the Alliance for Camphill. For the record, I include a synopsis of my talk, on the research evidence for shared-life communities.

"Public policy in the UK has sought to attain a fulfilling life for people with a learning disability by placing them in dispersed housing schemes after they leave their family home or hospital. These are houses or flats mainly in urban settings, with support staff employed by private and voluntary-sector agencies to work in the home or visit on a regular basis. This became the dominant type of accommodation for people resettled from the former mental handicap hospitals, although some were also placed in ‘residential campuses’ of homes managed by the NHS on the sites of the former hospitals. By contrast, few former inpatients moved to intentional communities based on shared-life principles. These are a diverse group of settlements and networks in which ‘co-workers’ (Camphill) and ‘assistants’ (L’Arche) are motivated by a personal calling to work alongside people with a learning disability, sharing their homes and family life. Shared-life communities of this kind vary in size and location (rural, small town or urban).

"However, research which has compared the quality of life of people with a learning disability in different types of housing has found that shared-life communities have similar outcomes for their residents as dispersed housing schemes. In some respects (especially friendships with other people with a learning disability, employment and personal safety), shared-life communities are superior. Shared-life communities also provide a better quality of life on almost all measures than the NHS-managed residential campuses, even though both characteristically comprise clusters of small houses dispersed across a shared landscape. This indicates that the size of a residence and its location is less important in determining quality of life than the pattern of social relationships within each residence or network.

"Studies which have explored the distinctive pattern of social relationships that exist in shared-life communities have found that residents appreciate the diverse range of employment and leisure opportunities, their wide friendship network with other people with a learning disability, and their sense of being part of a community in which they have an important part to play through shared decision-making and rituals. Friendship is facilitated by the availability in the community of several other people with a learning disability and by the sense of personal security it provides. Living in extended families with co-workers/assistants enables people with a learning disability and their supporters to acquire and build skills in each others’ pattern of communication - the essential step if a person with a learning disability is to learn of the world and express choices about what they want to do in it.

"Shared-life communities are therefore an appropriate option for people with a learning disability who prefer this lifestyle. The choice of how and where to live has in the past often been denied to people with a learning disability, but is defined as a right under the United Nations Convention on the Rights of Disabled People. It should therefore be respected by public agencies in how they assess, commission, fund and regulate residential support."

See also: Denying disability

The impact of research into intellectual disability

Universities in Britain are currently preoccupied with preparing for the next round of assessment for the allocation of government research funding (called the ‘REF’). A particular feature of this round is that universities are required to submit information about the ‘impact’ of their research, which will then be scored and included in the formula for allocating funds. As I noted in a previous posting, the idea that the whole of research can be scored on a simple scale is a prime example of a crackpot idea. However, institutions and governments cling to crackpot ideas, and respond to their inadequacies by making them more complex and hence even more crackpot. So it is with the REF.

Nevertheless, it is still important to consider which research has had the greatest impact, particularly where this concerns the lives of people who are disadvantaged, ill or disabled. If you look at the impact of research in my own field of public policy for people with intellectual disability, you find startling results. The two pieces of research with the greatest impact in the last five years have without doubt been the secret filming by the BBC in 2011 of staff abusing the residents of Winterbourne View, and the 2007 Mencap report Death by Indifference on the death by neglect of six people with an intellectual disability in general hospitals. Both studies received wide publicity and led to government reports, debates in Parliament, and legislation. Yet neither study was carried out by academics, and neither were published in academic journals. No academic study in this field over the last five years has had a remotely comparable impact. Why is this?

One reason is the way in that most policy research in intellectual disability is funded by central government. The Department of Health decided by the time it published the white paper Valuing People in 2001 that the healthcare of people with an intellectual disability was no longer a major policy concern. Little effort was therefore expended on commissioning research into general hospital care for this group of people, and there is still hardly any published academic research on this subject. Department of Health policy also favoured the decanting of people with an intellectual disability into small homes managed by the private sector and a reduction in specialist health services for those with mental health and/or behavioural disorders. However, small homes are usually unable to manage people with severe behavioural problems, and appropriate specialist care is costly. The private sector moved in to fill the gap by providing what were essentially long-term mental hospitals stripped of the level of trained staff that would have been provided if the NHS had managed the institution. The Department of Health did not see this as a problem before the Winterbourne View scandal, and so research was not commissioned.

But even if there had been a desire by the Department to commission this kind of research, it could not have been carried out by academics. Academic research involving human participants needs the approval of an ethical committee and (in the case of healthcare) of the NHS research governance system. Neither of these would have approved of secretly filming staff abusing residents or collecting data from families about how hospital staff caused death by neglect. Health and social services have a streak of self-interest which can be used to obstruct research into the poor quality of the care they can provide. But ethical committees block research for different reasons. Ethical committees apply rules developed in medical research, in which trials of new medications or surgical procedures carry a risk of harm to subjects. Medical trials are required to ensure that subjects give their informed consent to participation, and there are comprehensive guidelines for what counts as ‘informed’ and ‘consent’. This of course has the advantage of transferring liability to the subject. People who have problems giving informed consent therefore present particular difficulties for ethical committees, and it is difficult to gain approval for any research involving children, people with dementia, or people with intellectual disabilities. This is even the case when the research is (like most social research) descriptive and therefore involves no risk of harm from medication or surgery. In fact, the emphasis among ethical committees on the issue of consent makes it almost impossible for an academic to get approval to carry out any descriptive research involving people with an intellectual disability.

This leads to a bizarre paradox: research is deemed ‘unethical’ even where it aims to expose the grossly unethical treatment of vulnerable people (and hence protect them from further abuse). We therefore know remarkably little about the real world of residential care as experienced by this group of people or the real extent of the neglect and abuse they may suffer. This leads to a further paradox. Academics carry out little research in this important field of public policy: we rely for what we know on journalists and investigators in charities.

See also:
http://stuartcumella.blogspot.co.uk/2010/08/research-without-fear.html
http://stuartcumella.blogspot.co.uk/2009/10/great-crackpot-ideas-of-past.html

The man in the iron knee

The photograph above was taken four years ago, on a trip with my son along the road on the South East side of Loch Ness. Note the bent right knee. This appears in many of the pictures taken at this time - in others I am sitting down, sometimes also with a grimace of pain. The cause of this distress was psoriatic arthritis, which affected my right knee and developed from an irritating pain to crippling agony over a period of two years. Standing with my leg straight became impossible. Walking became an ordeal. I changed in two years from a man who ran up stairs to one who took the lift whenever he could. Even the shortest journeys required careful planning and the use of a car whenever possible. Even so, a trip of a quarter of a mile would leave me in severe pain and sweating with exhaustion.

Pain also crippled the soul. I was less able than I had been to stand up to the usual bullies and egoists that are found in most organisations (and certainly in universities). My sense of personal effectiveness declined, and the avoidance of pain occupied an increasing part of my waking thoughts. Psychologically, I became a painful knee with a man attached.

My return to health required surgery, which replaced my right knee with one made from titanium. This only took place after the NHS tried and failed with the various non-surgical alternatives, from steroid injections to physiotherapy and orthotics. Eventually, my wife and children urged me to request a knee replacement. I went to my GP, and a referral to an orthopaedic surgeon followed almost immediately. The surgeon explained in great detail the operation, the risks involved, and the probable outcome. There was no waiting time for the operation in the local NHS unit, where I spent four nights in a private room with en-suite facilities. After discharge, I received aftercare from physiotherapists and various home adaptations from occupational therapists. None of this of course required any negotiation with an insurance company or personal payments for treatment.

I spent an elated three months living without knee pain, until the back pain began. It seems that adapting to prolonged pain when walking had twisted my back. This was followed by further physiotherapy advice and some adaptations at my workplace. But by then, I had become tired of the long journey to work and took early retirement. Now I have lost weight, walk good distances, and live without pain. I still have the yellow car though.

Denying disability

In August this year, the High Court in London awarded £6.6 million pounds to Leo Whiten, a seven-year-old boy who had suffered brain damage as a result of medical negligence at the time of his birth. Leo now has cerebral palsy, limited mobility, cannot stand or walk unaided, and has no functional speech. His mother noted that: “He will never be able to live independently, will not be capable of any form of employment and will never have the necessary mental capacity to be able to manage his own affairs.”

Awards of this kind are usually divided between annual payments and a lump sum. The annual payments are to meet the additional costs required to live with a disability and the resulting loss of earnings, while the lump sum (in this case £2.7 million) is to meet costs already incurred and to compensate for the distress caused by the injury. Estimates of additional costs take into account life expectancy and the level of social care required, which in Leo’s case is needed for 24-hour/day. The additional healthcare costs that might be needed by Leo are of course met by the NHS, and Leo will also be eligible for statutory disability benefits, which are currently £73.60/week for the care component and £51.40/week for the mobility component at the highest rates.

Very few people who are disabled from birth receive compensation payments to cover their loss of earnings and their need for social care. Instead, they depend on services provided by local authorities. Funding for these has increasingly been devolved to individual disabled people, ostensibly to increase their personal control over the services they receive. But these ‘individual budgets’ are not an entitlement like the disability benefits - they are paid purely at the discretion of local authorities. As central government grants have been reduced, local authorities have responded by tightening eligibility criteria for social care and reducing levels of payments. Public funds have as a result met an ever-smaller proportion of the true costs of social care and amount to very much less for people with severe disabilities than the sums paid to Leo Whiten.

Leo, like other people with severe disabilities, will not pay personally for using healthcare or for attending school, which means that these costs fall on the public purse. However, many people with severe disabilities from birth require more intensive healthcare interventions than the rest of the population, including the use of expensive specialist services. Special education for people with severe disabilities is also more expensive than that provided in ordinary primary and high schools. This all means that the lifetime cost of severe disability (both for the public purse and for families) amounts to several million pounds per person.

Faced by these circumstances, both families and governments are tempted to resort to miracle cures, and there are many persuasive charlatans able to supply them. Some families have spent large sums of money sending their child to Florida in the belief that swimming with a particular set of dolphins can ameliorate Autism. Others have paid to be trained in a technique which involves constant manipulation of a child’s arms and legs, all of which is supposed to train his or her brain to overcome Cerebral Palsy. Since this level of intervention can not be sustained, parents come to blame themselves for their child’s continued disability.

For governments, charlatanry takes a different form: there is a sustained denial of the impact of severe disability, coupled with a pollyannaish belief that people with severe disabilities from birth can, with a bit of help, attend ordinary schools (and hence avoid the cost of special education), find an ordinary job in the open labour market (and hence be ineligible for social security), and use ordinary (and cheaper) non-specialist health services. Policies of this kind have a particular power because they can be presented as liberating, and can be contrasted with the sad history of the stigmatisation and de facto imprisonment of people with severe disabilities. But this is the radicalism of fools. It means that disabled people are less likely to get the services the need, and more likely to be incarcerated. The Department of Health has run down its inpatient care for people with intellectual disability who have mental and/or behavioural disorders. This has been promoted and legitimised by its now-defunct Valuing People Support Team. But mental disorders and behavioural disorders have not been magicked away, and there has been a compensating expansion in residential and inpatient care by the private sector. This can take the form of ‘downwards substitution’, in which people who need skilled nursing care get cheaper residential care, provided by untrained and over-stretched staff. The Winterbourne View case (exposed by television rather than the formal ‘quality assurance’ bodies) shows the results.

Of course, some people have benefited from these changes. They include the former head of the Valuing People Support Team, who has now moved to a senior position in the main private company providing residential care in England.

Working with ethical complexity

All work involves (or ought to involve) some ethical complexity, although this occurs less in some jobs than others. An ethically simple job would be the sale of lawful and non-harmful goods. The salesman is employed to sell, and receives payment to do so. The ethical requirement, therefore, is to meet the terms of his contract with his employer, which usually involves the aim of maximising sales. However, a conflicting ethical demand could arise if the salesman suspects that a customer does not need or cannot afford the product he has persuaded him to buy. The salesman may resolve this dilemma by telling himself that the customer is exercising free choice. This is more convincing if the salesman has taken the trouble to explain the full costs and features of the product. This is now often required by law, as a means of protecting consumers who would otherwise be ‘mis-sold’ products.

At the opposite end of the ethical complexity scale are occupations such as medicine, which require the frequent resolution by individual practitioners of multiple and often conflicting ethical demands. This has generated the academic discipline of medical ethics, to investigate these conflicts and propose rules for their resolution. But similar degrees of ethical complexity can occur in much poorer-paid and less well-trained occupations. For instance, support workers in residential care for people with cognitive impairments face ethical dilemmas on a daily basis. Do they allow their clients to take the kind of risks acceptable for almost all people, or do they protect them from potential harm? In more practical terms, do they allow a client who has no sense of direction and no awareness of the danger of motor vehicles to walk out into the street alone, or do they let them out only if they are accompanied by a member of staff or other responsible person? Should the staff allow a client to eat what they want, even if this results in gross obesity, or do they restrict their access to food? Do they allow a client to repeatedly hit their head against a wall, or do they restrain their limbs and insist they wear a protective helmet?

Faced by these dilemmas, support staff (and the public at large) usually favour exercising a ‘duty of care’, to protect those with severe cognitive impairments from exploitation and harm. Duties of care are most commonly experienced in the way in which we deal with children and people who are ill. It is not surprising, therefore, that some staff talk of their clients as if they are children rather than adults, or sick people rather than disabled and healthy. This is not sign of incompetence or malevolence, but a way of dealing with the real psychological stress involved between treating such a person severe cognitive impairments as an autonomous adult (as specified in numerous policy statements), while at the same time carrying out tasks that emphasise constantly their very lack of autonomy.

Research without fear

A week ago, my computer connection to the Internet ceased. This was puzzling because my son was still able to log on from his laptop, via the home wireless network based on my computer. Eventually, I traced the problem to the Norton Security software I had installed. With remarkable success, this had prevented any viruses infecting my computer by blocking access to all websites. Computers of course mimic the humans that create them. The Norton approach is found among experts on ‘security’ who argue that the only way to protect our liberties is to lock up without trial people who might possibly be terrorists, give the police free rein to assault and kill peaceful demonstrators, and subject all citizens to permanent CCTV surveillance. A similar destructive enthusiasm is found in the system used in the National Health Service for assessing the ethics of proposals for research.

Just as there are real computer viruses and real terrorists, so there is a true history of unethical research on patients. The most outstanding, described in every book on medical ethics, was the Tuskegee Experiment carried out by the US Department of Public Health, in which 400 poor black people infected with syphilis were monitored from 1932 onwards. Although penicillin was identified as an effective treatment by 1940, none of the subjects of the research were informed or treated, leading to the infection of their spouses and other sexual partners, and their children. The whole ghastly racist experiment only came to an end when a whistleblower informed the New York Times.

This case is a warning that medical scientists are no more ethical than other people, particularly when the subjects of their research are poor and from racial minorities. Bad ethical practice in research still exists, although usually in a less extreme manner than the Tuskegee Experiment. There have been cases of people included in clinical trials without their knowledge, people being denied effective treatments, pointless research inflicted on people, and so on. To prevent these kinds of problems, the National Health Service has set up a complex network of ethical committees to thoroughly assess all applications for research. This is backed by a parallel system of ‘research governance’, which ensures that the recommendations of ethical committees are followed by researchers, that research in insured by its ‘sponsor’, and that the cost implications of the research for the NHS are taken into account.

As governments have attempted to extend the protection of human rights (the 2005 Mental Capacity Act, the 2004 Human Tissue Act, and others), so the work of the ethical committees has become more demanding. Nevertheless, the system has improved greatly in efficiency in the last few years, and the various local ethical committees strenuously seek to protect the public from unethical research. However, there is a problem - the same sort of problem encountered by all who seek to avoid risk and create a world free of fear.

All autonomous or creative human action, whether individual or collective, involves risk and therefore danger. The risk may be very small, but the resulting fear may lead to disproportionate and even harmful precautions. In my village, both the primary and secondary schools are in easy walking distance for most children. But many parents drive their children to school because they perceive the quiet roads of a peaceful village to be dangerous and the pavements crowded with paedophiles. As a result, the roads through the village at the times the schools open and close become crowded with large 4x4 vehicles. This has the effect of making travel more dangerous at these times, even for those children and parents who do walk to school. Disproportionate precautions of this kind are particularly common among those with a professional responsibility to protect the rest of us. After all, it seems common sense to believe that one can not be too safe or too ethical.

In the case of ethical committees, this can result in extreme precautions being evoked for the simplest and least offensive of research projects. One of my masters students (a qualified and very experienced child mental health nurse) proposed to interview a small number of experienced and qualified paediatric nurses about their experiences of managing children who are admitted to accident and emergency following overdoses. The ethical committee expressed concern at the impact of these interviews on the state of mind of the nurses, and eventually insisted that an independent counsellor be made available to alleviate distress. Another student wished to send a questionnaire to fellow therapists about the impact on their career of changes in NHS employment practices. This has required six months of applications, and permission from dozens of separate NHS trusts. I know of many similar cases.

Why do ethical committees need to be involved when members of staff pose a few questions to other members of staff? After all, if we applied the same procedures to any other walk of life, all collective human activity would cease. One reason may be that all these research projects concerned the care of either children or people with an intellectual disability. Both are included in the ever-expanding group deemed ‘vulnerable’, a term that flashes warning lights to some ethical committees.

I raised these problems with a team sent to carry out a routine quality assurance review of our masters programme. I was advised that the solution is to discourage students from carrying out research of the kind that requires ethical committee approval. This is of course the Norton Security solution and ultimate triumph of risk avoidance - the danger of unethical research in healthcare will be completely eliminated by preventing any research from taking place. The cost of doing this is that we continue to treat children and people with an intellectual disability with medications for which have limited evidence of effectiveness, and that we fail to investigate the reality of care they receive behind the bland brochures and policy statements. As a result, their real vulnerability to poor quality health and social care is increased.

The Great PowerPoint Disaster

One of the frequent complaints about academics is that they are only interested in their research and neglect their responsibilities to their students. Academics of this kind undoubtably exist, and I have no problem with them. Universities would be a lot more efficient if staff were allowed to specialise in what they do best (or, more precisely, in areas where they have a comparative advantage). There is no point in getting top class researchers to run courses or carry heavy teaching loads. They do, however, have a responsibility to tell the rest of us what they are up to. The best way to do this is to a plenary lecture once a term on new developments in their field. Other academics should be allowed to specialise in teaching if this is what they do best. Teaching, rather than the commercialisation of research, is the most important form of ‘knowledge transfer’ in higher education: without effective teaching in universities, the quality of professional skills in society will decline generation upon generation. We will have wonderful technologies, but no-one able to use them.

Whether academics are more effective in research or teaching is in part a matter of personality. Research usually involves long hours of solitary work and therefore tends to attract more introverted people. Teaching, on the other hand, appeals more to extroverts and the best lectures are a sort of performance art. Extrovert or not, it requires great skill and commitment to lead students into a complex field so that they understand not only its complexity but also the areas in which knowledge is still uncertain. There have traditionally been several ways in which good teachers have achieved this. One is to start by posing a question, and then to look at alternative explanations, their strengths and weaknesses. Others may use a narrative approach, or start by presenting a simple overview of the topic and then progressively adding more complexity.

However, despite the best efforts of academic staff, I have an impression that our lectures have deteriorated in the last decade. I think this is because they have become dominated by PowerPoint technology. No other single invention has done as much to destroy learning as this accursed programme. Instead of analyses and systemic explanations, lectures with PowerPoint have become lists of bullet-points read from a screen. Some teachers enliven their slides by inserting pictures and animations, but PowerPoint has produced a generation of graduates who think knowledge comprises lists of facts. I can see the impact of this in the various government reports I read in my area of study. Where there was once coherent analysis and argument (in sentences and paragraphs), there are now repetitive bullet-point lists. For instance, the most recent Government policy report on intellectual disability (called ‘Valuing People Now’) includes nine bullet-point lists in its Executive Summary and 70 in the main text, all in 136 pages. Bullet-points are interspersed with pictures, personal stories, and examples of good practice. These are all entertaining, but the report glosses over the problems involved in living with a severe disability, and the dilemmas experienced by those who support disabled people on a daily basis. Bullet-points, however neat they look on screen and page, provide a weak basis for effective government action.

The Hadamar Clinic and humanity

In the summer of 1941, the staff of the Hadamar Psychiatric Clinic in Germany held a party with beer and wine to celebrate the 10,000th patient they had murdered. Initially, the doctors and nurses of the Clinic killed their patients by lethal injections. However, this proved far too slow a process, and so they devised the more cost-effective system of using carbon monoxide in fake shower rooms to kill large numbers at once. The people they murdered were a diverse group of disabled and mentally-ill people, but most had an intellectual disability (called ‘learning disability’ in the UK) and were thus deemed a threat to the efficient survival of the German ‘race’.

The policy of mass murder of people with an intellectual disability by the Nazi regime was an extension of a widely-approved public policy of eugenics. In the first part of the 20th Century, eugenics attracted support from left and right, and from leading intellectuals. Indeed, it was the more socially-progressive societies like Sweden and Canada which at that time most ardently promoted the eugenic policies of the compulsory sterilisation of people with an intellectual disability, and their incarceration in mental handicap hospitals. Eugenics became discredited by its association with the Nazis, and public policy in almost all countries today favours the integration of people with an intellectual disability into the day-to-day life of society. The old hospitals have closed, the rights of disabled people are increasingly protected, and strenuous efforts are made to improve their employment opportunities.

It is tempting to see these changes as marks of ‘progress’, in the sense of an incremental improvement of civilised values from barbarism to humanitarianism. But this would be historically inaccurate. The harsh policies associated with the eugenics movement replaced those influenced by more humane ideas in the 19th Century, which had emphasised the potential of all people with an intellectual disability for learning and social improvement. Rather than a march of progress, our recent history has been a struggle between two views of humans and their worth. Eugenics represented the idea, popularised in the Enlightenment, that human beings are distinguished from other species by their rationality. Rationality then becomes the measure by which people can be ranked, but also a means of determining the general arrangements of society. This legitimises ‘social engineering’, or the application by those in power of measures to shape the lives of those deemed less rational than themselves. A fear in the early 20th Century that the less rational sections of the population were increasing in numbers compared to the more rational created support for eugenic ideas, and led to the ultimate Nazi social engineering project at both the Hadamar Clinic and the mass industrial-scale killings that followed.

There is another and older view of humankind: that each of us possesses an essential essence or soul, that gives us our human character and by which we can be judged. The quality of our souls is unrelated to our physical strength, our intelligence, or our rank in society: a person with an intellectual disability can have a soul more worthy than that of a scientist that sneers at him. This is of course a fundamentally religious outlook, which should make us very troubled by attempts to drive out religion in the name of science. What, therefore, should be the duty of the scientist and the intellectual according to this older view of mankind? It should be to find out the truth and tell it to others, to maintain knowledge in society from one generation to another, to help people reflect deeply on their values and choices, and to do all this with humility.

Valuing intellectually abnormal people

After many years of neglect, The Government in England has got round to making policy for people with an intellectual disability (usually called ‘learning disability’ in the UK). The main policy statements have the usual vacuous PR names - Valuing People and Valuing People Now, and include high-minded statements of principle combined with a commitment to ‘choice’. This is to be realised by subjecting people with an intellectual disability to lots of assessments, while at the same time relieving them of the burden of having anything to choose between. This is because services such as day centres are being closed (sorry, ‘modernised’), while funding for any kind of communal living is being withheld. After several scandals, the Government has finally conceded that some action may be needed to improve the health of people with an intellectual disability, but is still committed to winding down specialist mental health services for this group.

This is all justified as being ‘inclusive’ - the latest term in a sequence which began with ‘normalisation’, via ‘social role valorisation’ and ‘ordinary living’. However, these principles to date have only been imposed on people at one end of the IQ scale - those who are two standard deviations or more below the mean, equivalent to an IQ score of lower than 70. To avoid discrimination, we should of course apply the same thinking to the other group of intellectually abnormal people: those two standard deviations above the mean, with an IQ of 130 and above.

When we look at the life-styles of this latter group in England today, we can see that these too offend the principle of inclusion. This is particularly true of arrangements for education and daycare. For a long time in the past, the intellectually-abnormal attended segregated special schools (the so-called ‘grammar schools’). The expansion of comprehensive education has of course reduced this segregation, but wealthy people still pay for their intellectually-abnormal children to attend residential special schools at places like Eton and Harrow. It is, however, after secondary school that non-inclusive policies dominate. Most intellectually abnormal at present go to segregated institutions (the so-called ‘universities’). Fortunately, changes in government policy has meant that these institutions have expanded to include a much wider range of students who are not intellectually abnormal. However, universities still have a major role providing sheltered daycare for many people with intellectual abnormalities for the whole of their adult lives. This is often presented as being ‘work’, but you will often find low levels of activity, most of which comprises pointless and unfulfilling activities like teaching and marking.

The situation is hardly better in the residential circumstances of intellectually-abnormal people. Many seek their friends exclusively among other members of this group, and even marry each other. They often live together in communal settings (particularly when they are ‘students’), and tend to congregate in particular areas of towns. The position is far worse in the USA, where there are rumoured to be whole college towns of people with intellectual abnormalities.

What should be done about this? Following the principles of Valuing People etc, we should enable people with intellectual abnormalities to choose the lifestyles of the general population. There is no reason why they can not work in open employment such as shopwork, clerical activities, and manual assembly-work. Indeed, thanks to recent Government economic policies, more and more intellectually-abnormal people are moving into such jobs after they leave university. We should emphasises the importance of intellectually-abnormal people taking part in ordinary community activities (like going to bingo, the pub and the dog track), which will help them develop friendships with ordinary people. In that way, we will move to a society where everyone will increasingly be the same.

Riding the Autistic Spectrum

Where are you located on the Autistic Spectrum? Do you have the full set of the ‘triad of impairments’ (impairments in social interaction and communication, and repetitive behaviour) that used to be the main markers in fixing a diagnosis of ‘Autism’, or are you just a bit obsessional? Do you just like to live in a clean house, and do you follow routines in getting up, washing, cleaning your teeth, going to work, and so on. Be careful, someone might accuse you of being ‘autistic’.

A few years ago, the diagnosis of ‘Autism’ was made infrequently, even for children with major problems. Parents would spend years seeking an explanation for their child’s unusual behaviour until they would eventually light on a psychiatrist prepared to make the diagnosis. Clinicians are now more willing to diagnose Autism, and are helped by a number of useful diagnostic measurements, but in the meantime the diagnosis has changed into a spectrum. The idea of regarding a disorder as a spectrum rather than a diagnosis is based on the observation that most of the distinctive traits and behaviours comprising the triad of impairments do not have a clear cut-off point. In other words, people do not have either impaired communication or unimpaired communication, they have degrees of impairment. This sounds sensible, but there are problems.

In the first place, people use ‘spectrum’, but still think ‘diagnosis’. Being told someone is ‘on the Autistic Spectrum’ becomes a synonym for a diagnosis of Autism, even though the person in question does not have the severe impairments traditionally associated with the diagnosis. Over time, this problem has got worse because spectrums, by definition, do not have a clear cut-off point distinguishing when you are or are not on the spectrum. In the case of Autism, this has meant that the term is now used to designate a whole collection of behaviours that not long ago would have been regarded just as being odd or eccentric. This repeats the process that took place some years ago with the diagnosis of ‘Depression’: now everyone who feels a little miserable or unhappy says they are ‘depressed’. This wouldn’t be so bad if it was just a matter of the names people give to themselves, but names have consequences. Calling yourself ‘depressed’ rather than ‘miserable’ suggests you have a medical condition which requires medication. Calling your child ‘autistic’ rather than ‘a bit obsessional’ suggests you need expert assessment and treatment. Concerned parents thereby divert scarce professional resources from those who do actually experience severe problems in their daily lives, including those who have ‘Autism’ in the original sense of the word.

Apart from this problem, there is an unresolved puzzle with the Autistic Spectrum: what is at the other end of it? My unsystematic observations indicate that there are a group of people with significant impairments who are rarely recognised as such. There is therefore no diagnostic term to describe them, but I will call them ‘Asystemic’. Whereas people with Autism find human behaviour hard to interpret but are more confident in dealing with systems and machines, people with asystemic disorder have no problem understanding other humans, indeed they revel in their human contacts. However, they are unable to comprehend machines, including those we use in our daily lives. You can recognise asystemics when you see people failing utterly to work simple machines like a photocopier, a computer, or even a lift. It is quite common to see asystemics frantically pressing the lift call button in the belief that this will make the lift realise that their need is urgent. In other words, asystemics, lacking a ‘theory of machines’, anthropomorphise the devices they come in contact with. Are asystemics disabled? Many find refuge in jobs like psychology, social work or even politics, where their understanding of human behaviour is valued and the devastation they cause by their failure to appreciate systems will be hidden for some time. Of course, from their perspective, most of the rest of us must seem ‘autistic’, and by comparison to them, we are.