Tag Archives: Ethics and the Good Life

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.