Time to rethink autism and communication

You don't have to look far to find derogatory descriptions of the communication of autistic people. Terms such as 'disorder', 'impairment', 'deficit' and 'dysfunction' abound in the research literature which, when you drill down into it, offers multitudes of negative conceptualisations of the ways that autistic people do, or don't express themselves. In simple terms, autistic people are considered impaired whether they are speaking, or not speaking, for the words they choose, or don't choose, for talking too quickly, or too slowly, for doing so at the wrong time, in the wrong way, or in the wrong place. Indeed, as I wrote in 2018, when I explored the intersection of autistic communication with noise and silence in schools, autistic people are simply considered to be making 'the wrong kind of noise'.

Non sense

Sadly, it's just a short hop, skip and jump between the notion of communication impairment and cognitive dysfunction. In fact, the supposition that non or occasional speech use equates to intellectual disability and 'developmental delay' is widespread in the research literature and deeply embedded in practice. The assumption is that if someone doesn't use speech, if their words are infrequent or produced in unanticipated ways, then their thoughts must also be limited, jumbled and infantile. Certainly not to be trusted or relied upon. It's the 'I can't understand you, so you mustn't be making any sense' school of thought. This is an important factor, in my view, in why autistic people can have very poor access to healthcare, are often failed by the criminal justice system and, as far as children are concerned, are sadly too frequently misunderstood and excluded from education settings.

Non communication support

I am not denying at all that some autistic people need help and support with their communication, just as some non-autistic people do. But as Dr Marion Hersh explained at a conference I organised recently in London called 'How I Communicate', AAC (Augmentative and Alternative Communication) devices are rarely designed with end-user input, leading to visually cluttered screens, for example, or complex technical functionalities which could hardly be described as 'user friendly'. In addition, these devices are too often programmed by support staff in a limiting way: no room here for expressing thoughts, dreams, hopes for the future or very strong interests, with a focus instead on requesting cups of coffee or asking to go to the loo. Such an approach leads, in my view, to the exact opposite of what communication support should be designed to achieve: individual agency.

In these ways, communication support lapses all too easily into communication control, both in what the person expresses and how. For some of the autistic children in my study, for example, their communication was only validated and acted upon if it corresponded with the adult's intentions, while it could be ignored entirely if they were 'off message' with what the adult had in mind. For one autistic boy, the focus was often on getting him to mind his p's and q's; on signing 'thank you' and 'good morning' to the class teacher. And yet he was communicating all of the time, verbally and non-verbally, about his interests, the activities he enjoyed, and the circumstances that enabled him to relax, which surely should have been greater priorities. 

Non understanding

To be labelled as a poor communicator (or even 'non communicator' in some cases) also leads to the assumption that any misunderstandings and breakdowns in communication are a result of the (deemed to be) impaired individual. But logic alone – never mind research evidence – dictates that this simply cannot be true. Some individuals are highly skilled at tuning into the communication style of the person they are seeking to interact with, others less so. Occasionally, in the schools where my research was based, I was genuinely confused by what the child was being asked to do, as instructions were unclear or even contradictory. Or sometimes, as Dr Damian Milton described at the How I Communicate conference, confusion can arise simply because of a mismatch between the communication styles of two people. 

This perhaps wouldn't matter so much, if it were not for the fact that in schools and care homes, for example, there can be a significant power imbalance between the autistic person and those providing support. In cases of confusion or when mistakes are made, it will always be assumed that the autistic person is at fault. It's the 'go abroad and speak loudly to foreigners in English' approach to communicative exchanges, where communication is perceived as something to be extricated from an unwilling, alien and uncomprehending subject.

Shared interaction

So it's time to rethink autism and communication, to re-evaluate the therapist/impaired subject model and understand communication as shared interaction between two or more individuals on an equal footing. For example, at the How I Communicate conference, Professor Nicola Shaughnessy and Dr Melissa Trimingham described how, as part of the 'Imagining Autism' project, they soon realised, that rather than imposing data collection methods on the autistic children involved in their study, it was much more fruitful to be guided by them and to cede researcher control. Furthermore, research by Dr Brett Heasman, who presented via video at the same conference, shows how the interactions between autistic people with each other take a distinct, autistic form and shape, and so have their own, intrinsic value. And my own study demonstrated that when autistic children are able to access their very strong interests in school, this can be highly advantageous to their communication, both verbal and non-verbal.

Language and understanding

It's also time to re-appraise the assumption that limited speech equates to learning disability so that support, when it is needed, can be shaped to genuinely enhance the life experiences and possibilities of autistic people. Fascinating research from Canada, for example, has shown that minimally verbal young children are at risk of having their abilities underestimated if the approach to testing is rigid and inflexible. This can mean that when a child doesn't respond, or doesn't answer a question, this is equated unquestioningly with lack of understanding. Instead, strength-informed models of assessment for autistic children who have little speech have been found to be much more successful in identifying their abilities than more conventional tools such as the Wechsler Intelligence Scale for Children. Similarly, research in the US suggests that echolalia (the tendency to repeat words and phrases, often associated with autism), for example, rather than being devoid of meaning, can be both productive and a stepping stone in speech development. So really, there are promising signs from the research field in these areas.

Taking back control

Moreover, it would also be erroneous to paint a gloomy picture of autistic disenfranchisement in relation to these issues. The artist Jon Adams, who presented at the How I Communicate conference, explained how he plants tiny, rebellious words or images into his artwork, which aren't even always noticed. These unspoken acts of subversion serve to shift the narrative in the autism context from lack of control to empowerment through silent mischief. This reminds me of an autistic boy I know who has very little speech, expressing himself infrequently in single words only. On an occasion when a support worker was trying hard to get him to do something he didn't want to do, he got up and left the room, stating, to her surprise, "I'm not giving in." 

Similarly, the boy in my study who was expected to sign 'please' and 'thank you' and whose wishes were often ignored, was in fact fiercely determined, and certainly when I was observing him, never once did something he didn't wish to do. Given the circumstances, I felt this was a rather admirable trait. On one occasion when he had refused, despite repeated efforts on the part of his teaching assistant to look at a particular book, he walked across the classroom to return it to the pile of books when she eventually gave up, turning back to tweak it into place as it wasn't quite straight. 

I think his meaning was clear.

- Dr Rebecca Wood is an ESRC postdoctoral Fellow at King's College London. The 'How I Communicate' conference was at the Westminster Quaker Meeting House in London on 3 July 2019. Other presenters were Freya Cumming-Webb, Dr Shaun May, Sarah Playforth and Anya Ustaszewski. Rebecca's book 'Inclusive Education for Autistic Children and Young People' will be published in August 2019 by Jessica Kingsley Publishers.

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