Tuesday, January 7, 2014

Autism and Well-Being

By Richard Ashcroft, MA, PhD

Professor Richard Ashcroft teaches medical law and ethics at both the undergraduate and postgraduate level in the Department of Law at Queen Mary, University of London. Previously, he was Professor of Biomedical Ethics in the School of Medicine and Dentistry, and before that he worked at Imperial College London, Bristol University and Liverpool University. Professor Ashcroft is Co-Director of the Centre for the Study of Incentives in Health, funded by the Wellcome Trust, with partners at Kings College London and the London School of Economics.  He is also working on the role of human rights theory, law and practice in bioethics policy, and on ethical challenges in public health. He has a longstanding interest in biomedical research ethics. 

I am both someone who writes and teaches on bioethics, and father of a son with autism.  He’s a delightful and happy child and he and I have good lives. But like most parents of children with autism I do worry about his future. I worry about social exclusion. I worry about mistreatment by others. I worry about education, employment, housing. I worry about how he’ll manage when I’m gone. I worry about whether he’ll meet someone to love, who will treat him right and value him for who he is. In other words, I worry about him the same way any parent worries about his or her child. His autism just gives me a hook to hang the worries on.

Nonetheless, there is something about autism which challenges our dominant accounts of well-being. There is a common and long-running debate about “stims”, which can crudely be described as repetitive, socially unusual behaviours which autistic people sometimes engage in. Common stims include humming, or spinning, or bouncing on one’s feet or certain kinds of hand gesture. The psychology of stims is related to “sensory issues” which often form part of autism, whereby the autistic person is more or less than usually sensitive to certain kinds of sensory input (light or sound or motion, for instance). Stims can be understood as a sort of self-regulatory behaviour to deal with under- or overstimulation of some sensory mechanism. Stims are just one example of visible autistic difference, in a condition which is sometimes described as an “invisible disability”: a disability where there is no obvious physical impairment which a third party would see with the untutored eye. Most autistic people who stim, if they are able to use verbal communication, say that stims are important to them, either as a coping mechanism, or as something which gives them pleasure – or both. Yet many parents, teachers, and passersby find stims bothersome, irritating, or worse. This is the case even when the stim has no direct impact on them.

As for stims, so for many other common behaviours in autism: for instance echolalic speech, perserveration, meltdowns, dietary intolerances or strong preferences may all be experienced as natural and authentic emotional and behavioural responses by the person with autism, and yet be experienced as problematic by the parent, friend, teacher or bystander. It should be noted that autism is very diverse in its presentation, both in the degree of impairment or disability experienced and the forms it may take or the behavioural traits seen.

One important debate about behavioural traits common in autism concerns whether these are signs and symptoms of disability, and whether in turn this disability is an inherent impairment or a social construct.  But the debate about well-being is just as interesting. Taking stims as our example again, is stimming a sign of well-being? A prejudiced bystander or an exhausted parent might well say no. The person who is stimming might say yes. Who has the authority to settle the question? One subtlety is that stimming may be calming, and being calm is a mark of well-being; but as a response to stress or distress it is a mark of relative lack of well-being. We have to work out whether stimming is a sign of enjoyment or stress.   This question of understanding is of enormous practical importance. Equally, however, we have to ask questions about the standard of evaluation. Should we assume that well-being and flourishing are entirely personal, or that there is some objective standard or list of features which is common to all people, or that there is such a thing as “autistic wellbeing” or “autistic flourishing” which is different in nature and scope from “neurotypical” variants of wellbeing and flourishing? Now, in the short run this is fairly easily settled pragmatically: I can usually tell you with some reliability whether my son is happy or not. More to the point, so can he. And we usually agree; and when we don’t I try to find out why not, and his view is probably more trustworthy than mine. It’s his life, after all. But in the long run, this is not such a helpful guide. No parent ever took for granted that moment-by-moment happiness over the course of a childhood is a recipe for, or predictive of, happiness in independent adulthood. The very idea of education militates against that notion too. So the problem is, if we don’t really know what flourishing or well-being is for autistic people in the here and now, how can we sensibly shape education and parenting, which aim at such flourishing as a long term goal? Is educating or training people with autism to “pass for normal” desirable, even if it is achievable?

Source
Various philosophers have struggled with this problem, most notably Martha Nussbaum in her recent Frontiers of Justice and Eva Feder Kittay in many of her writings. Importantly, much of the best writing has been by philosophers with direct experience in raising a child or caring for a relative with a disability or impairment. But philosophers have still been too slow to take the experience and voice of people with autism seriously enough as giving reliable accounts of their own well-being and flourishing. And even when we do take these experiences seriously, we may be listening to too narrow a range of voices.

Recently (October 2013) I took part in a fascinating workshop on autism and wellbeing organised by a Danish philosopher, Raffaele Rodogno, at the University of Aarhus. In the morning I read a paper on the topic, as did Raffaele himself and Ingrid Robeyns (Erasmus University of Rotterdam) and Eva Billstedt (University of G√łteborg). But in the afternoon we had a roundtable discussion led by autistic young adults from a local self-help group. Two things became clear: first, that this was a very articulate and insightful group of young people who had a lot to say about well-being which certainly humbled me in light of my rather inchoate ramblings earlier in the day. Second, that what they had most to say about was not well-being but its lack. And this was not to do with “the miseries of autism”; far from it. They were proud of their interests and their achievements and this was very apparent. Rather it was to do with the mistreatment, discrimination, intolerance and lack of understanding they met on a daily basis: exclusion from school, ridicule of their differences, intolerance of their sensory needs, low expectations on the part of their teachers about what they might achieve in life.

What do I conclude from these reflections: first, we need to think harder about well-being and its diversity; second we need to listen to people’s own accounts of their well-being and flourishing; and third, we need to pay close attention to the ways in which our societies positively destroy well-being.



Want to cite this post?

Ashcroft, R. (2013). Autism and Well-Being. The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2014/01/autism-and-well-being.html

1 comment:

Ancient Granny said...

Most clear and articulate. My Autistic Grand daughter , "stims in various ways and it is when a relaxed happy smile is part of her varied stimming that we know she is happy. There is anxiety ,"Stimming " too, then we know to help find the cause.
As to your view , via Autistic young adults...I agree that a great deal needs to be conveyed to the education system about accepting the contribution Autistic individuals can make to a more sensitive and open minded society.