As a researcher, writing about your family, or bringing in personal issues of any kind, is always a tricky decision. In the run up to the Interdisciplinary Autism Research Festival (IARF) in May 2021, where I had been invited to give a key note on autism and communication, I thought long and hard about whether I should ‘go personal’ more than I usually feel prepared to do.
My thoughts revolved in particular around my brother Nick, who lost his speech in his thirties following a severe illness. Nick shared the family passion for languages, and spoke French, German and Afrikaans. In the year above me at school, it had annoyed the heck out of me that in my German oral exam, the examiner spent the first five minutes telling me how brilliant Nick’s performance had been the year before, all the while staring wistfully out of the window. So it was a particularly cruel blow for Nick to lose all but a small handful of spoken words at a relatively young age. This impacted him much more than the physical disability that had also resulted from his illness.
I could easily write here about the swift degeneration in how some people communicated with Nick once he could no longer rely on speech. It was, after all, stark and shocking, such as when a speech therapist invited me to an assessment (where Nick pretty much failed all of the tests), simply to prove to me how poor, as she perceived it, his communication and cognition were. But despite all of this, and now that Nick is no longer with us, I tend to reflect more these days on how he quickly marshalled his communication arsenal to regain some sort of power and agency, which I spoke about briefly at the IARF. This included using the word “men!” and laughing, to indicate he had found something funny. Or frequently employing the Pinocchio gesture – pretending to extend the nose with the hand – to suggest I was drinking alcohol when I was sipping a cup of tea, which frankly I found quite irritating.*
I also made some bad blunders myself, which fortunately Nick was quite forgiving about. On an occasion in the pub, as Nick was manoeuvring his wheelchair, I had marched straight up to the bar and ordered him a glass of red wine, without asking what he wanted (Nick almost always drank red wine). The barman ignored me and asked “What would you like to drink Nick?”, upon which, using his dynavox (a voice output device using pre-recordings*), he requested a pint of beer. Needless to say, I felt rather foolish, amongst other emotions.
Nick also helped me to understand that limited or no speech, particularly if this is also accompanied by an inability to type or to access a range of augmentative and alternative communication devices (as a number of these are not especially accessible) can limit a person’s imprint on the world. Very little care is taken to record thoughts, feelings and reactions; it’s all about assessments, interventions and funding. Little attention too is paid to the quality of the communication, in its various forms, and how much can be achieved with so little, such as with a single word. This includes how that sole word might be uttered on different occasions to indicate subtle differences of meaning each time.
Despite desperately missing his former linguistic fluency, Nick responded to his new circumstances with creativity and humour. He has helped me, as a researcher, to be much more cognisant of the ‘disappearing act’ that can happen in relation to people who do not employ speech, the keyboard or the pen to communicate. We see this in autism research all of time, as it seems like, in the academic arena, non-speaking autistic people are fading from view to the point of invisibility. It’s just too easy to march up to the bar and act like a non-speaking person isn’t there, and to clumsily wield communicative power, even unintentionally. Nick showed me this, and so ‘going personal’ seems like the right thing to do. I have a feeling though that if Nick was still around, and I told him all of this, he would just wave his hand airily to suggest, as he often did, that I was taking life too seriously, and exclaim “men!”
*I am drinking tea and Nick is drinking beer in the photo above… You can also see Nick’s dynavox on the table in front of him.
Summary of the ‘How I Communicate’ conference, on the theme of autism and communication, that I organised in 2019 with my ERSC postdoctoral fellowship funding (grant number ES/S011161/1).
Link to ‘The Wrong Kind of Noise: Understanding and Valuing the Communication of Autistic Children in Schools’, published in the Educational Review, drawn from my research into autism and communication.