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.

8 thoughts on “Autism, Ethics and the Good Life: an introduction

  1. Pingback: Autism | Pearltrees

  2. Liz Fenwick

    I did all my training in the UK. I have now been working int eh USA for 3 years and it seems to me that over here they have not really considered these ideas. It just seems that they are stuck in the ABA approach and not really considering the individual. I am really discouraged by the approach which says if it seems to control the child’s behavior, then it is OK……
    I would like to have my present colleagues read this summary to hopefully open their eyes. May I copy it?

    Reply
  3. Mike Post author

    Hi all,
    I am writing up my notes for the rest of the conference for a new blog post. For our American friends one of the speakers, Eva Feder Kittay, Distinguished Professor of Philosophy at Stony Brook University, New York, gave an inspiring lecture that was not just about autism. Her daughter is not autistic but has significant cognitive impairments. Another speaker, Stuart Murray, speaks highly of Mark Osteen, and contributed to a book that Osteen edited, Autism and Representation (New York, Routledge, 2008).

    There are significant voices in the USA. They just need to be louder. I think we are at a stage now with ethical approaches to autism that is comparable to where we were in relation to the vaccine-blaming, autism-fearing, biomeddlers five years ago. We were winning the argument in the blogosphere but struggling to be heard in the mainstream media before respected doctors and academics like Paul Offit and Richard Grinker took a public stand on vaccines and epidemics.

    The Thinking Persons Guide To Autism and similar initiatives are a step in the right direction. Now we need the ethical big hitters like Kittay to enter the public debate. Conference presentations and journal articles are a valuable contribution. But opinion pieces in the press and TV appearances have a wider impact.

    Reply
  4. Pingback: Autism, Ethics and the Good Life: Narrative and Representation | Penumbrage

  5. Lyle

    America is obsessed with the ABA approach because so many people are making money off it. Most the autistics I’ve seen appear ill. They obviously have compromised immune systems and have a difficult time fighting off infections which is really bad if they can’t talk and that is usually why they are so upset if there are behavioral issues.

    Reply
  6. Paul Cook

    thanks for the great summaries/thoughts mike. you cut to the chase effortlessly. hope you get more written up soon. i’m trying to balance my reading for MA dissertation and your blog is keeping me questioning everything.

    Reply

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