Autistic children and intense interests: the key to their educational inclusion?

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Illustration by Sonny Hallett*

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.

*Illustration from: Wood, R. (in press) Inclusive Education for Autistic Children: Helping Children and Young People to Learn and Flourish in the Classroom, London and New York: Jessica Kingsley Publishers. Currently available to pre-order.

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More than just a dog…

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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. DSC00461I 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.

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The first photo I ever took of Wanda, on the residential course I did with her.

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.

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Wanda chasing after a pebble thrown into the sea on holiday on the west coast of Scotland in 2011, not long after she came to us

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. IMG-20120720-00338Battles 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. DSC_0063But 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?

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Some of Wanda’s ashes have been scattered into the sea at the same place on the west coast of Scotland where we took her in 2011

The Wrong Kind of Noise

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Simplified version of ‘The Wrong Kind of Noise: Understanding and Valuing the Communication of Autistic Children in Schools‘ by Rebecca Wood, published in the Educational Review.

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.

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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. communicationIt 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.

Article reference: (free to download until the end of September 2018)

Wood, R. (2018) ‘The Wrong Kind of Noise: Understanding and Valuing the Communication of Autistic Children in Schools’. Educational Review. https://doi.org/10.1080/00131911.2018.1483895

*The ICD-11, published since the original article was written, states that ‘Individuals along the spectrum exhibit a full range of intellectual functioning and language abilities.’

I will be speaking on the issues of autism and communication at the following conferences:

Participatory Autism Research Collective (PARC) conference: 18 July 2018

Autistica conference: 6 September 2018

Scottish Autism conference (joint presentation with Kabie Brook): 8 – 9 November 2018

 

When SENCOs are hard to reach

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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.