Daily Archives: April 8, 2012

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.

What should our funding priorities be for autism?

The following poll has been posted on the UK Autism Linked In Group

At a time of limited public funding, what in your opinion is the most important area to tackle (I realise that it is important to do all these things, and I’m not advocating to drop any of them.

 

  • To research the causes of Autism.
  • To improve the diagnosis of Autism.
  • To offer support to people with ASD.
  • To offer support to parents.
  • To improve facilities in schools.

Despite the poll attracting very little attention I mention it because two of the comments express views that are widely held but rarely subject to scrutiny.

The first is that

Early intervention makes such a long term difference if provided in a timely and structured way.

It does not really matter which interventions we are talking about, although advocates for early intensive behavioural interventions consistently make this claim. They may be right but where is the evidence? Most studies concentrate on benefits to children compared to control groups that do not receive early intervention or else they compare benefits from differing versions of early intervention. There is very little research into adult outcomes and how they correlate to early intervention.

When Professor Patricia Howlin delivered the 2012 Centre for Research in Autism and Education (CRAE) Annual Lecture she cited figures from Shattuck et al (2012) that out of 11000 items of autism research published between 2000 and 2010 only twenty three pertained to adult interventions and services. The National Autistic Society campaign I Exist was precisely about the difficulties that adults encounter in accessing services they need in order to enjoy a full life. Our current campaign around implementation of the Autism Act is meant to ensure that local authorities meet their obligations under the Act to provide services for adults and do not use the current economic crisis as an excuse to do nothing or even cut back on existing services.

The second comment that

parents […] are most likely to be the key carer in any child’s life

is true for children. But children become adults and usually outlive their parents. Furthermore, those adults who are judged to lack capability to care for themselves are the responsibility of social services departments. Parents may still be heavily involved but they have no rights regarding the decisions taken on behalf of their adult offspring.

It is fair to debate whether parents or government agencies are best placed to identify the needs of adults, whatever the reason for their mental incapacity. But we will all be orphans one day. And so will our children. Sooner or later they are going to have to manage without us. Surely it is better to encourage that in our lifetime while we are still there to ease the transition.

Children have the right to an independent life. We have the right to enjoy the empty nest once our children have grown up. If that is not happening because of deficiencies in the system, those deficiencies will still be there when we are dead and gone.

So I voted to prioritize resources for adults. Not only do we owe it to the generations who have been under diagnosed and ill served up until now, such interventions have been shown to be cost effective. The National Audit office Report, Supporting People With Autism Through Adulthood found that identifying autistic adults and targeting services to meet their needs would actually result in a net saving by reducing the inefficient use of existing resources.

I am not advocating a pity party in which differing parts of the autism community vie for sympathy and support in order to maximize their share of the cake. We need a bigger cake and we need to challenge the assumptions of those who run the bakery. I question the predominant idea in autism that if we can fix the children it will be alright. The practical obstacles to finding a “fix” are enormous. And the ethical dimension has scarcely been considered, something I will begin to address in my next post. Meanwhile there is a lot we can do to fix society’s attitudes to autism and the social policy agenda that is causing needless harm and distress to vulnerable adults. Our children are tomorrow’s adults. So let us Act Now and Act Together for all their futures.