Recently as I was walking across a series of interconnected pedestrian crossings at Glasgow airport, I became aware of a group of four people coming in the opposite direction: three women, one of whom was pushing a young man in a wheelchair. The young man caught my attention because he started gesturing excitedly, his right arm tracing a large arc in the air, as he twisted himself round and leaned out of his chair to provide extra emphasis to a strong, straight-armed pointing gesture to his left.
As I looked towards where he was pointing, I noticed that the three women stopped immediately, took out their phones and turned to the left, and started taking photos or perhaps video of what was a very beautiful, soft rainbow arching across the grey sky and the dreary terminal building. None of them spoke, and this brief episode seemed quite natural and relaxed. When I reached the other side of the crossings, I turned round and they were still there, gathered in a companiable huddle, looking at the rainbow.
I don’t know these people of course, but it seemed evident to me that there was a lot of shared, unspoken understanding in that simple episode, and that the three women’s immediate and unquestioning response to the young man’s epic point spoke of genuine care.
This incident reminded me of a father and young adult son (I believe with a learning disability) I used to see in the local woods where I walk the dog. They would walk quickly, arm-in-arm, the son wearing a warm, padded coat, of a rich, emerald green. There was something about the closeness of their demeanour, the purposeful pace of their walking, as well as this beautiful green coat, that resonated love.
These incidents contrast starkly with other occurrences over the years, either observed or experienced closer to home, when those expected to care for disabled individuals do little of the sort. I don’t believe that care or love can only exist in families (a concept in itself that should be interpreted broadly), but I do consider that if care is absent, and if the disabled person is not seen as an equal partner in the group, whose aims and intentions are valued and respected, then no good can come of it. Love can take many forms, and caring is itself a form of love, and we should expect nothing less for all members of society.
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.
Some of us, even avid fans of The Archers, have long lamented the inconsistent attitude towards disability in this phenomenally long-running radio drama. Set in the fictional village of Ambridge in the similarly fictional rural county of Borsetshire, the few disabled characters tend to appear fleetingly, a mere blip on The Archers timeline, which stretches over several decades.
This includes the character of Bethany, a child with Down’s Syndrome born a few years back, conveniently shifted to Birmingham when she reached school-age, thus depriving listeners with disabled children of the chance to hear their endless battles over education explored – and so validated – on air. Disability has also been associated with evil, as we heard in the character of Rob, a manipulative and abusive man, mocked by villagers when he became ill. This included almost knocking him to the ground as he hobbled away from an argument with the support of a walking stick. His illness was seen as a just manifestation of his evil nature, and so it was fair game to attack him.
More recently, we have the harrowing storyline of Alice, who is an alcoholic. As befits this usually gentle radio soap, the issue is covered in a frank and informed way, made all the more alarming by the fact that when Alice discovers she is pregnant, she is unable to stop drinking. Her husband Chris, on learning of Alice’s alcoholism and the extent of her deception about her dependency, helps her to enter a support programme. But even then, Alice can only reduce her drinking gradually.
At the time of writing, Alice has given birth, unexpectedly six weeks early. Although baby Martha appears to be doing well, questions revolve around whether she will have been damaged in some way by her mother’s unhealthy pregnancy. Chris is torn between his strong love for his daughter and his fear that she might have a learning disability, for example. He constantly uses the word “perfect” to describe little Martha, thus raising the question that she might not be “perfect”. Alice meanwhile, is wracked with guilt that she might have hurt Martha through her drinking. Chris loves Alice deeply and understands that alcoholism is an illness, but he is conflicted over the impact it might have had on the baby.
One issue that has always dogged mothers of disabled children is that they are considered somehow to blame for their child’s disability. It is rife in certain cultures, and not exactly absent in the UK. This includes the idea that emotionally distant mothers – “refrigerator mothers” – cause autism in their offspring, or that giving birth to a disabled child is somehow punishment for wrong-doing.
The difficulty with Alice’s storyline is that disability is inextricably intertwined with mother blame. To explore alcoholism through pregnancy means that one cannot be separated from the other. If baby Martha has a learning disability and so is deemed not to be “perfect”, it will be Alice’s fault. Surely it must have been possible to develop an alcoholism storyline without opening the door to this unhelpful narrative of disability and flawed mothers. As a parent of an autistic child, I have experienced this directly: “I’m not surprised you have an autistic child” some relative stranger once threw at me, by way of an insult.
It is bad enough that the young female characters in The Archers must always be defined in relation to their status as mothers, let alone that the idea of having a disabled child is considered beyond the pale. I don’t know how things will pan out for baby Martha, but I suspect that her parents will love her regardless of any disabilities she might have. I look forward to the day when The Archers has a character who also happens to be disabled, rather than this being a dramatic or temporary device. A disabled character that stays as long as the matriarchal Peggy, in the soap for over sixty years, who, on learning that Bethany had been born with Down’s Syndrome, refused to look at her in her pram.
Read a book chapter by Professor Katherine Runswick-Cole and myself in which we explore attitudes towards disability in The Archers:
Runswick-Cole, K. and Wood, R. (2017) ‘Bag of the Devil: The Disablement of Rob Titchener.’ In Courage, C. and Headlam, N. (eds), Custard, Culverts and Cakes: Academics on Life in The Archers, Bingley: Emerald Publishing.
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 firstname.lastname@example.org. Online summaries can be found here and here.
I have spoken and written a number of times about the problems of school exclusion faced by autistic children and young people. This exclusion can take many forms (e.g. both from school and within school itself), and the reasons for this sorry situation are complex and multi-faceted. But few can doubt the negative impact on autistic children in terms of their health, well-being, attainment and longer-term outcomes.
At the same time, many of the school staff in my PhD study complained that they felt they lacked training in autism. Autism training – and where to find it – is also the most common question put to me after conference presentations. And while good quality training* in autism can of course be extremely beneficial, the concept of training can also be problematic. This is because it may reinforce the idea that school staff can only make sense of these apparently mysterious beings if someone else provides specialist knowledge. In other words, pinning everything on the concept of training can contribute to the notion that autistic pupils are different, strange or ‘other’.
Alongside these issues is the question of representation. The five schools in my study were all in a large, culturally diverse, urban environment. They did an admirable job, it seemed to me, of validating that cultural diversity, through themed events, wall displays and classroom activities. But as one parent expressed passionately, referring to the lack of representation of disability in her son’s school, “there’s no heroes as in a disabled person“. As far as she was concerned (and I agreed with her), the lack of representation of autistic children in the broader school culture was another, subtle form of exclusion. And yet the United Nations Convention on the Rights of Persons with Disabilities (2006) asserts the importance of ‘mainstreaming disability issues’ (preamble g), and also states that there must be ‘respect for the right of children to preserve their identities’ (article 3).
And so if we put these two issues together – training and representation – this does suggest the need for a new approach if we want to reverse the negative cycle of exclusion for autistic children and young people. If school staff feel they need training in autism, what if some of those staff are autistic? And if they are, does everyone else know? If not, why not? What are the problems autistic school staff face in their work? Is being autistic an advantage in the education profession? What needs to be done to encourage more autistic people into teaching? And how would autistic children and young people feel if they were represented in school, not only through its pedagogy and culture, but by the person sitting in front of them every day – the class teacher?
It could be, that for decades now, by focusing on ‘strategies for inclusion’ and staff training, we have been looking in the wrong direction, even if these approaches have a role to play. By shifting our attention onto facilitating and enabling a more diverse school staff, the apparent need for external specialists diminishes, as understanding of pupil diversity becomes more integral to the ethos and culture of schools. This in turn could represent a major step forward in improving school inclusion.
In order to explore this issue, I have launched an anonymous and confidential pilot survey – intended as a stepping stone to a larger project – into autistic school staff. It was developed in collaboration with a committee of autistic adults who work in schools, and is fairly quick to complete.** If you are over 18, and work or have worked in schools in an education role in the UK, please consider completing the survey. And for all education professionals, please share the survey on your networks (or contact me if you would like a hard copy of the survey and the participant information sheet). Overall findings from this pilot survey will be shared publicly and who knows, this could represent an important step in understanding and supporting autistic pupils, and those who teach them.
This project was initially developed as part of my ESRC postdoctoral Fellowship at King’s College London, where my mentor was Professor Francesca Happé. I am now a visiting researcher at KCL and a senior lecturer in Special Education at the University of East London. I can be contacted on email@example.com or firstname.lastname@example.org
*At the Scottish Autism conference in November 2019, I defined “good quality training” in autism as training which has been “substantially informed by autistic people, or entirely devised and led by them”.
**On the survey it is stated that the survey takes 20 – 30 minutes, as it was felt by the autistic committee that participants should not feel pressured to complete the survey quickly, especially if they wanted to think about their answers. You can take over 30 minutes if you need to, but equally it can be completed in as little as 5 minutes.
Autistic children and adults are often described as ‘obsessive’ or as having ‘narrow’, ‘restricted’ or ‘circumscribed’ interests. And when this trait is associated with being ‘fixated’ or very repetitive, it’s generally considered to be highly undesirable, and some behaviour interventions actively set out to diminish or even ‘extinguish’ these ‘fixations’. Even the term ‘special interests’, which seems on the face of it to be a more positive term, still suggests something a bit peculiar or odd.
When I started my PhD a few years back, I’m ashamed to say I wasn’t very tuned in to the notion of intense or very strong interests. So when I went into some schools to carry out my data collection which involved school staff, autistic children, their parents and autistic adults, I was really taken aback by what an important issue this was. In fact, autistic academics such as Dr Wenn Lawson and Dr Dinah Murray have been writing and speaking about this for over two decades, with Dr Damian Milton, Fergus Murray and others also making important contributions over recent years. Framed by these writers as ‘monotropism’ – a tendency to focus on certain issues or activities in depth to the exclusion of other inputs – this fundamental autistic trait is presented much more positively here, although, importantly, the drawbacks are not ignored.
The focus of my research was, quite simply, the inclusion of the autistic children in the five schools where I was based. I was looking at their inclusion in the fullest sense of the term – their participation in all aspects of school life such as the curriculum and trips, if they were accepted and encouraged as equal members of the community, if they were understood. If they were happy. And what I found was that when their learning tasks were very repetitive, the autistic children had to be prompted a lot to complete them, which was a very unsatisfactory state of affairs both for them and the supporting adult. In fact, if anything, it was the adults, not the children, who demonstrated repetition in their behaviour. On the other hand, though, when the autistic children were able to access their strongly held interests, the school staff didn’t need to prompt them anywhere near as much (or even at all), and the children were more motivated, independent and relaxed. Not only did this enable the supporting adult to take on a more constructive role, but the lighter-touch support meant that it was easier for peers to engage with the autistic children too.
Other striking findings were that some of the autistic children were more fluent in their speech when they were talking about their interests: they spoke at greater length, used a broader vocabulary, were less inclined to trip over their words and could handle more complex questions from me. Some autistic children showed better motor skills when they were able to access their strong interests and appeared more comfortable and relaxed in these circumstances too. So overall, given that their learning, curriculum access, socialisation, communication and independence were often facilitated when they could access their strong interests, it was not difficult to conclude that multiple aspects of their inclusion were enabled too. Could this be the solution we have been seeking to address the considerable levels of exclusion autistic children and young people currently experience within the education system?
Well it may be, although I did find some drawbacks to this autistic trait. For example, some school staff were frustrated that they couldn’t introduce the autistic children to the full curriculum, and said that their unwillingness to desist from an activity in which they were intensely engaged created limitations to their learning. Some of the parents in my study feared that the strong preoccupations of their offspring would be off-putting to their friends, or that they would simply write about their interests in tests, rather than answering the question. These are all important issues, which need further investigation, especially as some research shows that interests experienced in a highly intense way can impact negatively on well-being.
Nevertheless, it seemed to me that in some cases at least, the autistic children in my study were turning to their strong interests in times of stress or anxiety. And there has certainly been a lot of research which shows that autistic children and young people find school very stressful. So it might be the case that when this autistic trait is manifested negatively in school, it is a direct result of the stresses that school creates in the first instance.
Not only this, but research on interests and motivations in general education shows that all children are more independent, have more confidence in their ability and are more likely to see tasks through to the end when they are highly interested in what they are doing. Therefore, understanding better how to incorporate the strong interests of autistic children into their schooling could benefit other children too. Let’s not forget either that school staff stand to gain in this scenario as well, because they don’t have to work as hard at getting the children to concentrate and engage, and are able to develop more positive relationships with them.
In my study, I found that when the autistic children were able to access their intense interests, this brought, on the whole, a range of inclusionary advantages. Research has also shown longer-term benefits too, such as developing expertise, positive career choices and opportunities for personal growth. This underscores how important it is that the education of autistic children is not driven by a sense of their deficits, but by an understanding of their interests and strengths. And that rather than dismissing their interests as ‘obsessive’, we ought to value their perseverance and concentration, qualities we usually admire. And while we do need a better understanding of the negative manifestations of very strong interests, we also need to think differently, and better about the educational inclusion of autistic children. So maybe it’s time to ditch the ‘strategies for inclusion’ – which, let’s face it, aren’t working – and allow teachers the flexibility they need to be able to tap into the strong interests of autistic children in school.
To download a copy of the full journal article, click here.
Some readers will know that at few weeks ago, our much-loved family dog Wanda died. She was not far off her twelfth birthday, so I guess a decent enough age for a Labrador. Although I had hoped that our apparently fit and healthy dog would gradually get rickety and arthritic over the next couple of years, rather than being victim to a swift, cruel and nasty illness which meant that she was dead within ten days of me first taking her to the vets, thinking something might be up.
Wanda was originally an autism assistance dog for our autistic son, now aged 15. She came from the charity Dogs for Good, formerly called Dogs for the Disabled. This led to some amusing exchanges in the early days when people exclaimed “She doesn’t look disabled!” or “She doesn’t look autistic!” when I answered their questions about her.
We signed up for the assistance dog programme when our son was four, although there was a gap of nearly three years before we were finally matched with a dog. The most visible aspect of her role with my son consisted of him being attached to her jacket out on walks, especially in busy places. I realise that this potentially raises some ethical issues, but in my son’s case, he enjoyed it from a sensory point of view, because Wanda went along at a fair lick, and he liked the sensation of this. It seemed to help him relax and take in his surroundings, rather than being overwhelmed by them. Of course this should never be done against the child’s will, and in fact it’s difficult to conceive of how it could work, from a dog-handling perspective, without the co-operation of the child.
Wanda’s relationship with my son, with me, as well as our family unit, was complex, and this is something I have been navigating and thinking about since she died. When you sign up to the assistance dog programme, one adult has to be the ‘team leader’ i.e. the person who will do the dog-handling training, and it must be someone who is predominantly home-based.
For me, this meant, to start with, a seven-day residential course where the dog is with you at all times day and night, a great deal of follow-up support and ongoing training once you return home, and a continuing programme of training, care and skill-maintenance which the ‘team leader’, must carry out.
If this sounds hard, it wasn’t, although it is quite a commitment to take on. But having definitely not been a ‘dog person’ before Wanda came to us, I was very quickly really smitten by her. She had the most fabulously warm, relaxed and responsive personality. The training she had received from the charity was truly impressive, meaning she could stop, start, turn left and right, ignore distractions, pick up and drop items and follow a range of other instructions with ease. I could leave her in one place and she wouldn’t budge, even if I was some distance away, until I gave her a signal and then she would come straight to me.
But Wanda was also playful, affectionate and sociable. She had clear ways of communicating when she was in the mood for a game of ‘chase around the coffee table’ or ‘find the squeaky toy’, or that she wanted her tummy tickled. Wanda loved charging about with other dogs. And very quickly, she blended into our family, and we blended into her.
My son started school full-time at the age of eight, and over the intervening years gradually spent more time at clubs and other activities away from the home. He shot up in height and the harness-led walks were soon no longer viable. My husband continued to go out to work, and I stayed with Wanda most of the time, working part-time or from home. Battles over my son’s support were relieved by long walks in the woods with Wanda, the intensity of my PhD alleviated by strolling through fields, alongside rivers and coastal paths with her. We did a huge amount of exploring, often off the beaten track. Usually in the middle of some form of academic writing, I would compose sentences and paragraphs in my head, sometimes stopping to write them down en route, while Wanda waited for us to get started again.
Wanda was extremely adaptable: she was trained to go into cafes and supermarkets, doctors’ surgeries and hospitals. She could go into any environment without difficulty, and so I pretty much did everything with her, and went everywhere with her. She came with us on day trips and holidays, to friends’ houses and pubs and restaurants. I even took Wanda to Birmingham with me when I was spending a lot of time at the university there, renting a cottage on a farm on the outskirts of the city from which we also did long, exploratory walks. This was partly for practical reasons, so that I could look after her, but it was also undoubtedly because I liked her company.
Since Wanda died, I’ve been really gratified by the response of my friends and family, and people on twitter, to what feels like a huge loss. But it’s also made me aware of how we humans always seem to need measurements and comparisons to try to make sense of emotions, that we understand feelings by saying what they are not. I understand completely that there are worse losses to bear, but that doesn’t mean to experience a sense of bereavement over an animal is somehow illegitimate.
And with my autism researcher’s hat on, Wanda’s death has made me think a lot about the therapeutic and charity model of support dogs, of which there is an abundance of research evidence in the disability, special educational need and health fields. They show that dogs can help with a plethora of affective, health and practical needs, and of course some assistance dogs perform extremely important functions for people who are deaf, have epilepsy or are blind, for example. But I also wonder if we underestimate the simple aspect of companionship that a dog can bring, and see a close bond with an animal as being somehow of a lower order than relationships with humans. In my view, there’s no need to make such comparisons or distinctions, as long as we realise that if dogs look after us, we must also look after them.
Wanda was an animal capable of learning many skills and she was brilliant at pretty much everything. She had the mildest of temperaments but was astonishingly good at defending herself on the couple of occasions she was attacked by other dogs, managing to extricate herself from the situation unscathed. But in many ways Wanda was also a very simple creature: if she had food, walks and affection, she was happy. And so Wanda was always happy. Despite all of her skills, tricks and training, it was her mild, playful and affectionate nature which infused our home and seeped into some of the empty pores of our lives. Who wouldn’t miss, and mourn, such a companion?
When children receive a diagnosis of autism, this is often on the basis of having difficulties in communication, amongst other issues. This is hardly surprising, because most diagnostic manuals emphasise problems in communication and social interaction as being core components of autism.*
In fact, autistic people are considered to have potentially a whole range of communication difficulties, including problems understanding the language of others, difficulties in recalling words, lack of clarity when telling anecdotes, or focussing on apparently irrelevant or repetitive details. Some autistic people are described as ‘non-verbal’, and they are considered to have the poorest educational and longer-term outcomes. Selective mutism – an ability to communicate in some situations, but not in others – has also been associated with autism. Therefore, autistic people are simply thought to be saying the wrong things, in the wrong way, at the wrong time, or not to be saying what they should.
In order to look into this issue in more detail, I spent time with ten autistic children in five mainstream primary schools in England, and I also talked to their parents, school staff, as well as ten autistic adults who live in different parts of the UK. My overall intention was to find out how well the autistic children were accessing the curriculum and other aspects of school life, and I discovered that their communication was central to their general inclusion and well-being. I also found that their communication linked with issues to do with noise and what could be considered its opposite – silence.
All of the autistic children in my study exhibited some sort of difficulty with speech and, according to their parents, had been slower than their peers at learning spoken language. Some of the children struggled to find words, or they had difficulties with pronunciation. But this did not mean that they were poor communicators, and some were very effective in using gestures and actions, as well as speech, to convey their wishes and intentions. Indeed, sometimes the children communicated through silence. In addition, even though two of the children were described as ‘non-verbal’, I heard them use spoken language on a number of occasions.
Some of the school staff were very skilled at supporting the communication of the autistic children and were flexible and understanding in their approach. But others were less skilled, and tended to impose both the method of communication and the message itself. For example, a child might communicate that s/he wanted to do something by taking an item from a shelf, but the adult would make the child put the object down and go and find a card with a picture on it instead. But all that happened was that the child became upset, thinking the activity was being withdrawn. Or a child might choose a picture – therefore using the communication system which had been put in place by the adults – but would be made to choose another picture if the adult had other ideas about what the child was going to do. In these ways, the autistic children were only heard or understood if they were ‘on message’ with the adult’s expectations and intentions. And so they stood to gain little from communicating at all.
Not only this, but the schools where I was based were quite noisy, and this was an exclusionary factor for the autistic children, many of whom were very sensitive to noise. In fact, research has shown that children who have difficulties in processing language can be especially negatively impacted by excessive noise in schools. Therefore, autistic children who might have problems in learning language have an additional hurdle if the schools are noisy, with the chatter from other children being part of the problem. In other words, the talking of other children might make it more difficult for some autistic children to learn speech.
To make matters worse, I found that the autistic children had to put up with more noise and distractions that the other children, because they were sometimes seated in the corridor or to one side of the class with a teaching assistant, working on alternative targets. This meant that they were expected to focus and concentrate, despite people walking past and talking, or the class chanting their times tables, for example. So not only are autistic children potentially more sensitive to noise than other children, but they are expected to tolerate more of it. In addition, some sorts of noises seemed to be accepted in the schools, but when the autistic children made noises, they were thought to be odd and so undesirable.
Despite the fact that a lot of noise was tolerated in the schools, the staff placed a high value on silence, at least some of the time. But when the autistic children were silent, especially when they were absorbed in something which interested them, this silence might be disrupted by the very communication interventions which were intended to help them. For example, school staff sometimes tried to repeatedly get the autistic children to label items, or they might ask them supplementary questions when they were listening to the teacher. And so the ‘message’ of their own silence was not always recognised, even though class teachers sometimes wanted everyone to be quiet. The combination of all of these factors led me to conclude that autistic children – whether talking, making noises or being silent – are simply considered to be making the wrong kind of noise.
It’s important therefore that we rethink how best to support the communication of autistic children in schools. We need to focus less on the negative descriptions which can be part of a diagnosis of autism, and make sure we are approaching communication support in an individualised way. The starting point has to be not only how the child prefers to communicate, but what the child wants to express, even if it is not what the adult wants to hear. Communication and interaction are shared activities, and the surrounding factors – including noise and distractions – must always be taken into account. In addition, school staff should explore the vast range of technological devices which are available to support communication, which could be a lot easier to use than picture cards, for example. This might also be more motivating for the children. It might also help if teaching assistants were less pressured to carry out additional duties, which could then create the space for others to learn from good practice. Moreover, it’s time that noise in schools was considered in a more holistic way, involving the whole school community, who can decide together when noise is acceptable, and when it is not. School staff must also be careful not to problematize the silence of autistic children, or indeed their noise. In fact, it’s only by setting aside the assumption that autism automatically equates to communication impairments, and by recognising and valuing the verbal and non-verbal ways in which autistic children communicate, that their educational inclusion, independence and well-being can be improved.
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Being a SENCO (Special Educational Needs Co-ordinator) is hard. A casual glance through the Code of Practice (CoP, 2015) – all 292 pages of it – brings home the sheer breadth of responsibilities the job entails, some of which are firmly secured in law. So they’re not even optional.
Not all duties are fixed, of course, but generally you have to be able to identify and assess a range of special educational needs, instruct class teachers on how to include a diversity of learners in the curriculum, engage specialists, ensure the effective deployment of support staff, advise about budgets, keep records up-to-date, work with the school governors and the senior management team, understand and apply the law, plan and implement effective transitions. And, of course, liaise with parents.
All of this might be doable if SENCOs were assigned to the role full-time, perhaps with an assistant to help deal with the copious paperwork. But as research has shown, and my own PhD study substantiated, SENCOs may well be expected to fulfil a multiplicity of roles, including class teaching and additional management responsibilities.
This was brought home to me when I was trying to recruit schools for my PhD study, which focused on the education of autistic children in primary schools within a single local authority in England. For example, dedicated emails, with a personalised letter attached, remained unanswered. After then phoning the 45 primary schools, usually more than once, I eventually managed to speak to 13 SENCOs only – so that’s less than a third in total. The main reasons were that the SENCOs were in class, or only worked part-time. Five of the SENCOs were off sick (for more than a few days), and for six of the schools, I wasn’t even able to leave a message for the SENCO, let alone get through to speak to the person.
You have to wonder about the impact of this problem with contact on parents of children with SEND (special educational needs and disabilities), who might not be very confident about getting in touch with SENCOs in the first place, or are too busy to phone repeatedly during office hours. And yet one of the more encouraging aspects of the oft-cited ‘SEND reforms’ is an emphasis on parental engagement, and the importance of securing the agreement of parents on arrangements for their children. It’s clearly stated in the Children and Families Act (2014), for example, and asserted repeatedly in the CoP (2015). It might be painfully slow, but gradually attitudes might be shifting away from presenting parents as ‘the problem’ to be managed by school staff, towards recognising that they may well have a level of understanding the SENCO – who can only fulfil such a complex role with great difficulty – cannot possibly match.
So it was disappointing to see a piece in the TES, in which three categories of ‘challenging parent’ are set out: ‘angry’, ‘pandering’ and ‘non-engaging’. No matter how well-intentioned, it seems like a retrograde step to refer to parents in this frankly patronising manner. It also directly contradicts a piece I wrote for the TES myself, in 2016, where I warned against such an attitude. And when I worked as an autism education practitioner, I liaised with many families, and not once did I encounter one which was ‘hard to reach’. Fed up with professionals interfering with their lives – yes. Too overloaded to answer non work-related calls – yes. Sceptical about the benefits professionals might bring – yes. But hard to reach – no.
The SENCOs who eventually took part in my own study were an invaluable resource. In fact, I’d go so far as to say that without the SENCOs, I wouldn’t have a PhD. But they seemed very stretched, with one part-time SENCO, for example, expected to carry the workload of her full-time, but long-term absent colleague. Meanwhile, parents tended to be problematised, especially if they challenged the status quo.
Therefore, given the circumstances I have described, it doesn’t seem like too much of a leap to conjecture that only the most biddable of parents will be considered sufficiently ‘unchallenging’ by SENCOs feeling the not inconsiderable strain of their role. Moreover, the range of a SENCO’s responsibilities might mean that they become, in a very real sense, ‘hard to reach’ themselves.