Voice and science

Voice and science

The many reasons for listening to people

This post was published in Psychology Review

Photo by Rene Asmussen

Some individuals, by virtue of the marginalisation of the groups of which they are a member, do not have the same opportunities to be heard as others. People with developmental disabilities, for example, may not have the social capital that is required to 'pull their chair up to the top table', where all the real decisions are made. For those of us who see inclusion as the absolute endgame for psychology, this means that the 'giving of voice' is one important role for our work. Enabling otherwise disenfranchised people to be heard is a moral, ethical, and political imperative.

One way of doing this in psychology is to undertake empirical work that centres on 'first-hand accounts'. By this, we mean the framing of research questions that aim to achieve understandings of lives 'from within', and which use methods that enable research participants (or, indeed, co-researchers) to express themselves with as much clarity and autonomy as possible.

So far so good. It is hardly controversial to say that enabling people to be heard is a good and important thing. But I want to take this argument one step further. You see, the valuing of first-hand accounts is not only ethically, morally, and politically important. It is also scientifically important. And that is what this article is about.

The importance of accurate description

It is reasonable, is it not, to expect that before trying to explain something we get a good idea of what that something actually is. Take for example our planet. It is very difficult trying to explain its behaviour if we mistakenly understand it to be a flat disk. We end up making the wrong assumptions about its fundamental properties and creating distorted models of the solar system to try to account for the observations that we make. To build good explanatory models, we really need to start with good, accurate description.

It so happens that psychology has never been terribly good at describing. Indeed, thorough, descriptive, observational enquiry is somewhat looked down on in our subject, in contrast to subject areas such as ethology. The introductory psychology research methods curriculum illustrates this. We tend to launch rather too quickly into experimentation, before first learning the basics of observation. And that makes little sense. An experiment is simply a specialised form of observation in which you observe (and record) the behaviour of research subjects while manipulating one or more independent variables in pursuit of causal explanations. Logically speaking, it would make sense to learn to observe and record first—learn to describe accurately—before moving on to the more specialist skill of manipulating variables. And one aspect of learning to observe involves understanding the different vantage points from which we can observe, and the different types of knowledge that can be gleaned from those vantage points.

The autism spectrum

Let’s take a look at the autism spectrum. If we examine the history of descriptions of autism, we find that in some fundamental respects they were wrong. Kanner (1943) gave one of the first and most influential accounts of autism. He identified a 'powerful desire for aloneness' (p. 249). I would assert that, by and large, this is misleading. The 'desire' bit, that is. It is one thing to observe a child, say, with autism, spending time alone, and even seeking out 'aloneness'. It's quite another thing to assert that this amounts to a desire. Let's pick this apart a little further.

In recent years there has been much more attention paid to the role that sensory processing plays in the lives of those who are on the autism spectrum. In earlier scientific studies of autism, this aspect of the condition rarely figured, if at all. Now there is plenty of evidence to show that 'sensory sensitivities' are, in fact, a central feature of lives with autism (Robertson & Baron-Cohen, 2017). So much so that this is now one of the core diagnostic criteria.

What has all this got to do with first-hand accounts? Well, the point is that if we observe autism only from the vantage point of a third person—that is, with non-autistic researchers looking at autism 'from the outside in' as it were—we will never actually notice these sensory sensitivities. For decades expert academics and clinicians observed autism, and never realised the unusual sensory worlds of the people they were observing. Sensory sensitivities can be studied (observed) in all sorts of ways using specialist equipment once you know to look for them. The problem was that no one was looking for them!

Sensory sensitivities described from within

It was only when people with autism who were writing and talking about their autism 'from within' began to be heard, that the non-autistic world started to realise how significant these sensory sensitivities are (see for example Williams, 1996). People with autism talk about hyper-sensitivities to all types of sensory stimuli. One example is the way in which even relatively quiet sounds can be distracting, difficult to shut out, and even painful. They talk of experiencing difficulties in processing sensory inputs, and of how complex it can be to manage being in busy, noisy, vibrant environments.

This description of autism from the first-hand accounts of people with autism sheds a different light on 'aloneness'. Perhaps the child who is sitting on their own in a classroom covering their ears is not 'desiring' aloneness. Maybe they would love not to be alone. Perhaps their way of being in that classroom has more to do with having to manage responses to the outside world by shutting out the busyness, the noise, the unpredictability of it all? Perhaps Kanner should have talked of an 'enforced aloneness'? Needless to say, setting out to achieve a scientific understanding of enforced aloneness is an entirely different proposition to setting out to achieve a scientific understanding of desired aloneness.

Conclusion

I am not attempting to describe autism in this short paper. Indeed, this paper is not really about autism. My aim, rather, is to present the logic of the argument that first-hand accounts are a necessary component of a scientific study of people, particularly in the case of those whose voices have tended, historically, to remain unheard. I have filled out that argument by showing that some aspects of the experience of living with autism can only sensibly come from people with autism themselves. Without such accounts the risk of misdescription is high. In science, if we misdescribe a thing in the first place, then all our subsequent work on explaining that thing will be grounded on a set of false premises. And that is rather like trying to understand astronomy on the basis of the nonsense spouted by flat-earthers.

References

Kanner, L. (1943). Autistic disturbances of affective contact. Nervous Child, 2, 217–250.

Robertson, C. E., & Baron-Cohen, S. (2017). Sensory perception in autism. Nature Reviews. Neuroscience, 11, 671-684.

Williams, D. (1996). Autism: An inside out approach. Jessica Kingsley.