The Unsaid

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.


Lockdown schooling and privilege-checking

Education is one of those topics we all feel ourselves to be an expert on. Most of us went to school, and many of us have kids who go to school, or did so in the past. And with the school workforce comprising about one million people in England alone, many of us work in schools too.

So it’s hardly surprising that in the current circumstances – pandemic raging fuelled by governmental incompetence – that the collective opinion-forming on education is reaching its zenith. But as so often, in happy times and times of crisis, children with special educational needs and disabilities (SEND) are either forgotten about, added as an afterthought, or nudged out of the debate altogether.

It’s difficult to describe the arrangements for schooling since the first lockdown as anything other than a perfect storm of poor planning, a lack of vision and a failure to grasp core principles. So many U-turns, it really is quite dizzying, resulting in the ultimate absurdity of many primary school children swarming into schools for one day at the start of term in January 2021, only to be told they must stay at home for the rest of the month at least. But just as children who attend special schools did not even merit a mention the first time it was announced schools were to be closed in March 2019, the approach for the third lockdown has resulted in them being squeezed out of the narrative, yet again.

To be fair, I think the government has tried to head off the issue this time, by using the contested category of ‘vulnerable‘, which includes children with an Education, Health and Care Plan, to indicate who should continue to attend school. It was also supposed to be the case during the first lockdown that a good number of children with SEND should still go to school. But the reality last time and this, anecdotally anyway, is that at least some parents of children with SEND are told that their child can’t attend due to staff shortages or an inability to create a safe environment. And even with the provision of coronavirus testing in schools, which should create a degree of increased safety for all, with no arrangements to test ancillary staff such as drivers (many children with SEND rely on specialist transport to be able to attend school) and visiting professionals, welfare is inevitably compromised. This can mean that parents of children with SEND who have health conditions, or those with family members who do, feel unable to take advantage of a school place, even when it is offered.

The first lockdown resulted in a wave of well-intentioned, but often exclusionary, initiatives and resources for parents home-educating their kids. Celebs stepped up to the plate, and the BBC increased its educational output. Sadly, few of these materials were accessible for disabled kids, especially teens, and the narrative – that it was all a bit of a jolly jape for parents who had never home-educated before – was irksome for those parents of kids with SEND already doing this for years. Yes – news flash – parents of disabled children often find themselves teaching their kids at home, either through various forms of school exclusion, or the inability to secure funding for a setting that works for their child. So all the issues that accompany school closures – difficulties in working, exhaustion, lack of opportunities for children, limited resources and general tedium – have been impacting on parents with SEND for many years.

Which brings me to the subject of school exams, hotly debated as many kids understandably worry about how they will get their GCSEs and A Levels. As it happens, I, along with my co-author Professor Francesca Happé, recently had an article published on access to school tests and exams for autistic children*. Written in pre-Covid times, it shows how the autistic children in my study might not even do school exams, and if they did, they weren’t always provided with the access arrangements to which they were potentially entitled. Subject to certain conditions, access arrangements can include taking an exam at home, for example. Many of my participants – school staff, parents of autistic children, autistic adults – also felt that teacher assessment would be a fairer way of evaluating the skills of autistic kids, an option usually only available for the very youngest children in schools. So it’s interesting to see these discussions taking place now, when children with SEND have arguably needed these accommodations and considerations for decades, as still too many leave school with no qualifications at all.

For this new lockdown, the government has lowered the bar on which children can attend school, particularly those whose parent/s or carer/s work in a critical sector. This has meant more children attending school than during previous school closures, raising fears that this will do little to curb the current exceptionally high levels of coronavirus infections. I can completely understand these concerns, but yet again it means that the focus has moved away from families whose children genuinely need extra support and consideration, as the narrative swirls around the concept of exploitative parents who care little about infection control and the pressures on schools.

The simple fact is that many of the issues impacting on school kids and their families have always been endured by children with SEND and their parents and carers. Access to a suitable education is a right they are too often denied, and parents must often give up careers and financial stability to support and educate them at home. They do this often with limited resources and patchy access to external processes that would enable their children to gain qualifications. So as we all navigate our way through these incredibly difficult times, and the collective opinion-forming on education continues to rage, don’t forget that at least some aspects of ‘the new normal’ have been the norm for some parents well before the Covid era. If children with SEND are yet again squeezed out of the narrative, then it’s time to stand back and do a little privilege-checking.

*For an authors’ accepted version of the article, please email Online summaries can be found here and here.