Reflections on the lived experience of non-verbal children through a counselling-practitioner researcher lens

1 Leave a comment on paragraph 1 0 As access to alternative and assistive communication (AAC) devices and technologies are grows exponentially, the potential for understanding the inner worlds and lived experiences of people who are non-verbal with Autistic Spectrum Conditions (ASC) or genetic disorders such as Angelman Syndrome (AS), increases too (Calculator, 2009; Niemeijer, 2018; “Blog Posts”, 2018). This exploration of published works by young people who grew up being non-verbal is written to encourage reflection of what it might mean to live unable to express one’s inner world and how this might influence those around them to better support them. The introduction sets out the context and aims of producing this work. This is followed by a background of how society has viewed people with intellectual disabilities over time, focusing on accounts relevant to counselling. The validity of a reflexive, heuristic methodology is then considered, alongside ethical considerations. After introducing the young authors and their texts, themes are drawn out to be discussed through the lens of the counselling-practitioner researcher and conclusions offered on how the reader might be ‘moved’ by these reflections.

2 Leave a comment on paragraph 2 0 Keywords: autism, disability, non-verbal, auto-ethnography, trauma

3 Leave a comment on paragraph 3 0 Introduction

4 Leave a comment on paragraph 4 0 In this paper, books written by young people with an Autistic Spectrum Condition or Angelman Syndrome are explored, all of whom did not have the ability to speak as a child, and only later through technological assistance, found they could communicate the rich depth of their inner world to the people around them. I attempt to do justice to their words through exploring the themes that resonate with me as a counselling-practitioner researcher and as a parent to a child who struggles to talk and has very significant learning difficulties. Thus account has been written in the hope that people who work with children and young people might become more aware of, and reflect on, the possible meaning of the lived experience captured here. This paper has an anglophone focus due the author’s experience being embedded in the British system and culture.

5 Leave a comment on paragraph 5 0 Background

6 Leave a comment on paragraph 6 0 The history of how young (and old, if they survived that long) people with intellectual disabilities have been treated by society is disturbing (see O’Driscoll, 2009 and Silberman, 2015); a comprehensive review is not within the remit of this paper. However, some of the unhelpful developments in thinking relevant to psychotherapy are highlighted.

7 Leave a comment on paragraph 7 0 As O’Driscoll (2009, p.18) explores, in the 1980s, the idea that people with intellectual disabilities had emotional lives was of little interest and the training for helping such people was not available. Instead they were viewed as “incomplete, damaged, semi-empty vessels who are obviously human but equally obviously devoid of the inner life”. Later, the infantilisation of such people, reframed them away from being a menace or hollow, but generated a hard-to-bust myth about mental age and lead to people with intellectual disabilities being treated as toddlers, which “they in turn introject and come to feel about themselves” (O’Driscoll, 2009, p.18). Bennett (2012), when also a trainee psychotherapist trying to understand how society’s approach to intellectual disability might effect identity formation, reflects on how “attitudes are present that people with learning difficulties are child-like, inferior, helpless and stupid.  I believe these ideas impact people with severe learning disabilities. More so than I had previously given credit.” They are also typically positioned as dependent, vulnerable receivers of care and education (Olkin, 1999).

8 Leave a comment on paragraph 8 0 In 2018, 44.2% of children in England who have an Education, Health and Care Plan attend a state maintained special school (Department of Education, 2018); society is arguably still splitting off the parts of itself that are distasteful or diseased (Qu, 2015). Hawkins (2002) is critical of the endemic behaviouralism in special schools that perpetuates the idea that there is no emotional underpinning to behaviour for young people with learning difficulties. Over time we can see how shifting the goal posts of expectations alters the outcomes for these children (for example, in the 1940s the life expectancy for children with Downs Syndrome was nine years of age, today many live to over sixty years of age (Soloman, 2010) (see Soloman, 2010 for more examples). However, we still have far to go; for example, many children with Angelman Syndrome who are non-verbal have to prove their capability to work successfully with communications technologies in order to qualify for access to them, before they are given a chance to learn in a way that is meaningful to them (Sheldon, 2014).

9 Leave a comment on paragraph 9 0 The criteria that help to diagnose an ASC and Angelman Syndrome can enable action, intervention and access to suitable support services. However, reflexive practice is essential to stop the descriptions of these conditions put forward by medical profession in becoming “confused with reality as experienced by individuals” (Perry and May, 2011, p.102). The greatest movement in our understanding of ‘intellectual disabilities’ or non-verbal people is through self-advocacy (Autism Self-Advocacy Network, 2012; Silberman, 2015), of which the books reviewed below are an important part. People with an ASC have been have been “publishing information, trying to communicate the existence of misinterpretations of their differences… trying to explain something most of us have never experienced” (Bogdashina, 2004, p.17) The democratisation of access to communication devices play an important role in allowing parents to bring rich communication opportunities to their children previously presumed incompetent (Niemeijer, 2018). It is exciting to empower these young people to tell their own stories in what ever way they can, and to challenge our society to be open to them. Even in acknowledging their ability to write a biography do we challenge some of the limited conceptualisations currently offered: how can an autistic person write a biography if they have limited understanding of self and others, and poor memory?

10 Leave a comment on paragraph 10 0 Methodology, validity and ethical considerations

11 Leave a comment on paragraph 11 0 There is a lack of pertinent statistics about how many children might be non-verbal in the U.K. which reflects how under-researched the lives of people with severe learning difficulties or ASC are, especially the non-verbal (Autism Speaks, 2009; Bennett, 2017). Recent research shows how the communication attempts characterised by noises and silence from non-verbal children are often not understood or valued (Wood, 2018). This highlights how the meaning of ‘non-verbal’ can be hard to define. In this account, it does not mean that the children cannot make sounds, or even speak some words, but that they are functionally unable to communicate the depths of their inner world, or even start to let themselves be known through words. Bringing in the lived experience from this previously silenced group, “removes the risks inherent in the representation of others, allowing for the production of new knowledge … to inform specific problems” (Wall, 2006, p.149). The authors discussed below have an Autistic Spectrum Condition (ASC) or Angelman Syndrome. To put this in context, there are around 700,000 people on the autism spectrum in the UK; if you include their families, autism is a part of daily life for 2.8 million people (The National Autistic Society, 2018). Angelman Syndrome “is a neurogenetic disorder associated with significant intellectual disabilities, epilepsy, motor impairment, and expressive aphasia or lack of speech. It is a rare disorder, affecting approximately 1 in 15,000-25,000 individuals” (Sheldon, 2015, p.4).

12 Leave a comment on paragraph 12 0 Following a heuristic process of discovery, the topic of this paper reflects my “interest, involvement and personal commitment” (Nuttall, 2006) to the topic of inner voice for children who are non-verbal and the role of counsellors in wrapping their experience in words (McLaughlin and Holliday, 2014). The themes that emerge from the work of these young authors are a reflection of my own stage of development as a trainee psychotherapeutic counsellor and a mother, concerned with what their story means to me in relation to those children with disabilities who I know (my daughter and her friends), and also those who I might one day meet in my work. Thus, the exploration of themes that follows below is a synthesis, integrating the ‘data’ from the texts, in a way that reflects “personal knowledge, tacit awareness, intuition and understanding of meaning” (Etherington, 2004, p.111). 

13 Leave a comment on paragraph 13 0 In this paper, a co-constructed account is presented – that is one “that privileges the voices of [the young authors], but also recognises my position (and power) in selecting, (re)presenting, and interpreting [their] experiences” (Harter, Scott, Novak, Leeman and Morris, 2006, p.9). Reflexivity is an important part of this process: it involves “an ability to notice our response…, and to use that knowledge to inform our understanding” and interpretations of these young author’s words (Etherington, 2004, p.19). Based on a social constructivist view of research, the process of reflection is oriented towards “discovery, rather than verification” of a generalisable truth (Etherington, 2004, p.21). Critical reflexivity is valued here as a means for including personal experience in counselling-practitioner research where it offers a framework for: “contextualising” ourselves and our participants; being “open about choices” in representing or interpreting the lived experience of others through using our own knowledge and meaning making; and addressing “issues of voice in research by highlighting a potential dilemma about choosing which part of stories might be told” (Etherington, 2016, p.85).

14 Leave a comment on paragraph 14 0 Ethically it is important to consider what it might mean for any of the young authors introduced below if they read this paper. These young people have made themselves vulnerable through publishing their stories. I am very wary of reflecting on their story in a way that doesn’t hold true to the meaning for them. As such, I try to inform the readers of this paper what “new layer of understanding” I might add to the original account through my own lens (Bager-Charleson, 2010, p.87). A strong influence at this stage of my development, which gives my work a ‘certain colouring’ (Winnicott, 2017), is being open to the social model of disability (Shakespeare and Watson, Levitt, 2017) and ‘hearing’ about the young authors’ experiences of prejudice and discrimination, and limits to personal power and agency, and how adults and ‘carers’ are positioned within that. The account captured here goes beyond deficits and disorders (focussed on in the medical model of disability) and the idea that people who are non-verbal can’t understand their world. When practitioners and researchers can reflect “critically on their own experience, and enter empathically into worlds of experience different from their own” then the conversation regarding “the social and moral implications of the perspective and standpoints” (Bochner and Ellis, 2016, p.72) can be actively engaged in (Ellis, Adams and Bochner, 2011). Validity rests then on questions about whether the work contributes to a new understanding and new learning about the subject (Etherington, 2004).

15 Leave a comment on paragraph 15 0 The four authors whose works are included here were selected (purposive sampling) on the basis of two characteristics:

  1. 16 Leave a comment on paragraph 16 0
  2. they describe their lived experience of being a non-verbal child, assumed to be severely intellectually impaired by those around them,
  3. they write about how others might better understand them and people like them.

17 Leave a comment on paragraph 17 0 Discussion

Introducing the texts

18 Leave a comment on paragraph 18 0 Naoki Higashida is a vastly celebrated Japanese writer and poet. He wrote The Reason I Jump – One boy’s voice from the silence of autism when he was 13 years old, published in 2007, and first published in Great Britain in 2013 (subsequently translated into 30 languages), and Fall Down 7 Times, Get Up 8 – A young man’s voice from the silence of autism, published in English in 2017. Higashida uses an alphabet grid and transcriber, and David Mitchell (a well-known author) publicly testifies it is his own work (Mitchell, 2017).

19 Leave a comment on paragraph 19 0 Tito Rajarshi Mukhopadhyay wrote Beyond the Silence: My Life, the World and Autism in 2000. Later in 2011, he published “How Can I Talk If My Lips Don’t Move?”. Again his typing methods have been doubted, but have been tested by established academics (Blakeslee, 2002).

20 Leave a comment on paragraph 20 0 Ido Kedar wrote Ido in Autismland: Climbing Out of Autism’s Silent Prison (2012) when he was 16. He shares the lived experience of being autistic – his inner emotional life and personal growth. He was treated as a shell of a person throughout his childhood, and has worked very hard to prove and free his voice. Kedar also learnt to write through Rapid Prompting Method. (See United for Communication Choice (2018) for an up to date review of research in these communication methods).

21 Leave a comment on paragraph 21 0 Rylee Tipton started writing See The Hope at age nine, and over the next three years, chronicles the process of freeing her inner thoughts, publishing in 2017. Tipton was taught to read and write by her mother and used the proloquo4text app to write her book. She has Angelman Syndrome (AS).

Why they write

22 Leave a comment on paragraph 22 0 With great clarity these young authors call on the world to believe in the intelligent inner world of people who are non-verbal and to help them through education to communicate that.

23 Leave a comment on paragraph 23 0 These young authors are very clear about their aims: Higashida (2013) wrote his first book so that we, the outsiders, may “be a better friend to someone with autism” and “have a nice trip through our world”. Because although their world may be different, Higashida (2013, p.38) testifies his experience that his “feelings are pretty much the same as yours”, “everybody has a heart that can be touched by something” (p.70). Tipton (2017, p.24) too emphasises the sameness: “People make me think I am not like them. I am though inside”. Tipton (2017, p.32) feels she has to “show that I can do big things so other people will help my people with Angelman. They deserve to be free too”. Kedar (2012, p.156) writes:

24 Leave a comment on paragraph 24 0 In my book I have tried to show what autism is like from the inside. Now I hope that our strange ways will starts to make sense and that parents, and educators, and others will re-examine their point of view. I really pray that one day all non verbal autistic people will have the opportunity to learn communication and show the world that lack of speech is not the same as a lack of understanding.

25 Leave a comment on paragraph 25 0 These first person accounts are also written with immense feeling and poignant reflection – they tell of a lived experience; as Tipton (2017, p.43) says “real experiences, real words and they need to be shared with who ever wants to read them”. Bochner and Ellis (2016, p.68) talk about writing about suffering and hope (as these works do), as not an end in itself, but a “call for social justice”. How do they do this? Higashida’s (2013) story invites us to move from informed observers – as the dominant paradigm of education and cure-based discourse has fostered – and instead to position ourselves as open to other ways of knowing.  “I wrote this story in the hope that it will help you to understand how painful it is when you can’t express yourself to the people you love. If this story connects with your heart in some way, then I believe you’ll be able to connect back to the hearts of people with autism too” (Higashida, 2013, p.154). Tipton (2017, p.37) likens her experience to slavery: “life without writing is called slavery. I really make it clear how it feels that way. Slavery is a harsh word and not being able to communicate, same feeling”. She goes on to say that she is “a freedom writer because I am sharing my story to help others….. I want to make sure this book helps other people too” (p.43); that “life without freedom is no life at all” (p.39), and that “the day people believe in these people who cannot speak will be the best day of my life” (p.45).

26 Leave a comment on paragraph 26 0 They write from a unique and individual experiences and yet their work has a wider message. In this way, they reflect the defining features of a form of writing called autoethnography. Autoethnographies are “highly personalized accounts that draw upon the experience of the author for the purposes of extending understanding” (Wall, 2006, p.147). Bochner and Ellis (2016, p.65) describe it: “by connecting the personal to the cultural….first… focusing outward on social and cultural aspects of their experience; then they look inward, exposing a vulnerable self that is moved by and may move through, refract and resist cultural interpretations”. Bochner and Ellis, both distinguished professors of communication from the USA, who both live, write and research as ethnographers, and have published extensively on this topic. They quote Lorde (1984) a ‘black woman warrior poet’ who also issues a call to conscience as a vulnerable writer. She says that by sharing we make ourselves vulnerable, but by not sharing, by remaining silent, we risk “never really being a whole person” (Bochner and Ellis, 2016, p.81). Bochner and Ellis (2016) question how we can respond to otherness if we aren’t exposed to the thing that makes us different. Tipton (2017) also reflects on this juxtaposition. She writes (p.42):

27 Leave a comment on paragraph 27 0 Real world is very unjust at times. Real world is full of both love and hate. People are supposed to be good, but how do we know what good is without the opposite side?….I think I should tell my story to help my people. Some people might love it and some might hate it, but we can’t have one without the other right? This story of mine is a good one.

28 Leave a comment on paragraph 28 0 Todres (2007), a clinical psychologist and emeritus professor of health philosophy, offers that it can become meaningful to talk of understanding as an interplay of the familiar and unfamiliar.

29 Leave a comment on paragraph 29 0 If it were possible to have only the unfamiliar there would just be wordless shock or even non-recognition. If it were possible to only to have the familiar, then there would be wordless symbiosis, an eternal womb where understanding is unnecessary (Todres, 2007, p.15).

30 Leave a comment on paragraph 30 0 For these young authors their disability can be seen as their lack of voice to position their familiar world into the world of otherness to help them both in the process of appropriation – “make that which is given to them their own” (Todres, 207, p.16), as well as to offer their lived experience to help others understand who they are. Tipton’s (2017) wish that  “the world see me for who I am” (p.24) means she has to find a way to make her otherness known, and once she has, she uses this to help expand the idea that otherness may exist – to make an impossible identity possible (Smith, 2018), and ultimately create change for a better future. Before these stories were shared, that impossible identity was submerged; I hope it is an exponential discovery from which they (the writers) gain agency. As Todres (2007, p.54) says: “naming brings things and ideas into existence, making them real and lasting”. But it is not merely naming, but more what exactly the language and words of these young people evoke in us the readers; then their words have a symbolic power too (Todres,2007).

31 Leave a comment on paragraph 31 0 In attempting to find the words that do justice to their experience, as well as to compel others to believe their words, the authors make themselves vulnerable to the very misinterpretation, ignorance and dismissiveness that has defined their lives so far. The very act of telling the story opens them to the possibilities of a repeat of their experience of being ignored; and they know it. Mukhopadhyay’s (2011, p.3) epigraph is “to you who think my words matter”. Tipton (2007, p.12) says “people who don’t believe don’t have to read it”. Nevertheless, these young people have taken that risk and in doing so set the bar for “socialising the experience” of being without a voice (Etherington, 2004). And more than that, individually and as a collective, these works can be seen as qualitative research that ‘seeks to show and evoke the presence of a lived experience through words” (Halling, 2007, p.xi) – it brings to life an embodied response (Shakespeare and Watson, 2001) .

Existential questions

32 Leave a comment on paragraph 32 0 Higashida’s (2013) book reflects on the existential pain of his position; he writes: “I used to feel abandoned by the whole world” (p.40), “I used to wonder why non speaking me had ever been born” (p.40).

33 Leave a comment on paragraph 33 0 Bochner and Ellis (2016, p.68) reflect on simplifying moments, when “life brings… darkness, sadness, frustration and loss…, we stand on a sheer existential cliff” and ask “how do we survive the chaos and confusion?”; “what can we do to shine a ray of hope through the boundless darkness to find positive meaning?”. Tipton (2017) considers this carefully; she called her book See the Hope. She writes “my memories make me sad. I need to not attack my past but learn from it” (p.16). Mukhopadhyay (2011, p.216)  says:

34 Leave a comment on paragraph 34 0 perhaps all those stories, written and waiting to be written, will be my contribution to society. Perhaps my mere presence will be a contribution because it will remind some stray hearts that they have enough reasons to be thankful to the Maker of the Universe because they are not like me. And by my mere presence in this form, I can remind the Creator of the Universe that all that he has created may not be perfect. And in my own striving towards the fulfilment of my existence, I can tell the Creator I forgive Thee for every distortion in which I exist! and I am not worried about hell because I have experienced it here on earth.

35 Leave a comment on paragraph 35 0 In these books, it seems very likely that text is used as both an agent of self-understanding and also ethical dialogue. Their writings expose the choices and values of others around them. In considering their mixed emotions and conflicts, and multiple ways of understanding what happened to them, it seems they may “express the complexities and pain of coping and trying to feel resolved” (Bochner and Ellis, 2016, p.71). Their stories are so human, they risk vulnerability and self-disclosure as a plea to be believable and belong. They leave the reader in no doubt of the cruelty of the silence of having no voice, and a call for communication and education, that start from a position of believing in their intelligence and inner world.

A healing endeavour

36 Leave a comment on paragraph 36 0 There are other more concrete reasons one might suggest these young people wrote their books. Penn (2001) (cited in Etherington, 2004, p.146) writes that “writing stimulates and facilitates motor and sensory regions of the brain, and can help recover additional fragments of former experience…..[helping us] to reach intuitively into some part of ourselves that is outside our notice – still unnamed but there”. Tipton (2007, p.37) writes that “free writing is hard work but it kind of organises my thoughts. Before writing I had thoughts in english but they were not as good as they are now” talking about grammar in part, but also about accessing her own thoughts more clearly. Higashida (2013, p.37) found that communication or writing allowed him to understand that he, too, “exists in this world as a human being”. Kedar (2012, p.156) concludes his book by saying “as I have written this book I have learned to examine my own illness and I have come to understand myself much better. When I started writing I was a bitter and self-pitying person. I am not anymore”.

37 Leave a comment on paragraph 37 0 Writing about traumatic or difficult experiences can in itself be a “healing endeavour”, and improve wellbeing – bringing physiological changes (Etherington, 2004, p.145). This resonates with the counselling idea that wrapping an experience in words creates physiological change (McLaughlin and Holliday, 2014).

38 Leave a comment on paragraph 38 0 It seems clear that being ‘without a voice’ – unable to speak, and misunderstood is extremely painful, possibly traumatising and adds to the experience of the organic conditions (such as ASC or AS). Tipton (2007) says “I had no way of showing what was inside of me…I was angry and wilted from animosity towards everyone” (p.15) and “I have been in a shell for so long that I was not trusting of people including my parents” (p19). Higashida’s (2013, p.10) experience of not being able to express himself was: “it’s like being a doll spending your whole life in isolation, without dreams and without hopes.”

39 Leave a comment on paragraph 39 0 It seems that being unable to communicate their intelligence, or show what was inside, non-verbal children might become more prone to traumatisation. As Sieff (2015, p.1) explains:

40 Leave a comment on paragraph 40 0 When our experiences are unbearable, painful or frightening, particularly if there is no-one we can turn to for emotional support, a damaging imprint is left on our mind, brain and body… we disappear into a world of fantasy and hate what we have become….our personality fragments.

41 Leave a comment on paragraph 41 0 Research findings suggest that even the more verbally-able children with ASC can have less of a buffer or support to cope with traumatic experiences due to being socially isolated; they are also less likely or unable to express reactions to trauma (Hoover, 2015). There is also research findings that suggests that the sensory experiences of autism are in themselves traumatic and people with an ASC may have more severe emotional reactions to traumatic events (Hoover, 2015). Haruvi-Lamdan, Horesh and Golan (2017, p.11) argue that the “unique characteristics of sensation, perception, social awareness, cognition and global understanding in ASD may alter what events and stimuli are experienced as traumatic”.

42 Leave a comment on paragraph 42 0 As I read these accounts I reflect on my own experience as a parent trying to be sensitive to my young child’s emerging intentionality, whilst also being confused by her non-verbal communication. It leads me to be curious as to how these young authors develop a nascent sense of subjective self inferred through how parents think about them (Fonagy and Allison, 2014) and how they develop the verbal sense of self without feedback from people around them that brings meaning to their experience (Stern, 1998).

43 Leave a comment on paragraph 43 0 Higashida’s (2013, p.15) opening preface starts: “When I was small, I didn’t even know that I was a kid with special needs. How did I find out? By other people telling me that I was different from everyone else, and that this was a problem”. This reminds me firstly that the social model of disability is pertinent not just to the parents who are trying to locate their child in a society, but the slow and doubtless painful realisation of difference to the children themselves. They are sending out signals of their selves and receiving the message in return that they are a problem. In the United Kingdom, parents are encouraged in paediatrician appointments and social care visits to emphasise their child’s difficulties and shortcomings (instead of strengths and interests) as part of the process of seeking accommodations for a family member with specific needs. However, it seems there is little consideration for the effects of this focus on the family and child. Higashida (2013, p.29-30) writes: “Every time I’m talked down to I end up feeling utterly miserable – as if I’m being given a zero chance of a decent future”. Tipton (2017, p.16) writes that “one time I got so angry because my teacher said I might not know what everyone said around me. They talked like I was not right there. Very upsetting”.

44 Leave a comment on paragraph 44 0 Higashida’s book The Reason I Jump is written as answers to 58 questions about autism. As I read the I become aware of his understanding of us, the talking people, the questions we ask of autism and what kind of answers we might be able to use. It reminds me when we live in a world where little makes sense and we can’t ask questions, we may well become key observers.

Blocked mind-body connection

45 Leave a comment on paragraph 45 0 These books all testify to how the young author’s bodies and movements are disloyal to their inner intentions. Higashida (2013, p.55-56) says “being touched by someone else means that the toucher is exercising control over a body, which even it’s owner can’t properly control. It’s as if we lose who we are. Think about it – that’s terrifying”. He also talks about how his meltdowns are so destructive – “Finally, finally, I’ll calm down and come back to myself – then I see no signs of the tsunami attack – only the wreckage I’ve made. And when I see that, I hate myself. I just hate myself” (p.65). Tipton (2007) writes about how her mom “misunderstood my body language a lot and still does! I am always saying stuff with my body but not always understood” (p.26), and more widely how her experience of being misunderstood comes from others inability to decode her body: “Keep feeling like my appearance always makes people think I not understand because it look like I not listen” (p.24). Kedar (2012) too talks about his body and brain disconnect: “I live in a world in which my brain is sort of only for thinking and my body needs guidance and can’t get input it needs from the brain.”  “It’s rotten.” “It is almost like a form of paralysis” (p.101). As Higashida (2013) says “you can’t begin to imagine how miserable and sad we get” (p.70).

46 Leave a comment on paragraph 46 0 Often the young authors’ writing and describing has a strong aesthetic texture, staying close to the individual experience. As Todres (2007, p.8)  argues, “it is this texture that can become easily lost in our efforts to generalise”. The challenge is that if they have no words and their bodies are disloyal, how do we connect and understand what they mean to ‘say’? If their experiences are describing the realm of imagining, embodied knowing and intuition, perhaps therein lies the key for others to understand them?

Sensory beings and magic reality

47 Leave a comment on paragraph 47 0 Mukhopadhyay’s (2011) accounts of his life are fragmented, with very short, seemingly unconnected chapters which portray the great intensity and absorption of his inner world. It seems that for these authors, as children, their survival lay in inhabiting this magical inner world in such depth because the real outer world could not meet their needs (see Winnicott, 1989). For example, there is much in Mukhopadhyay’s book (2011) about how as a young boy his life revolved around interactions with mirrors, and a chapter called “what could the upstairs mirror tell the handheld mirror” (p.15). He could not understand the language of reflections but he built his own stories about their communications: “Sometimes I made the colours dispute each other. Sometimes I made the colours share their secrets” (p.16). I wonder if this ‘dialoguing’ is allowing him to find the words to share experiences and parts of himself? There is great contentment in these accounts from Mukhopadhyay (2011) – this fantasy experience is very strong for him, such that his “boundaries between imagining and experiencing something was a very delicate one…so many times I need to cross-check with Mother…..whether an incident really happened…(p.22). As an extension of this, Mukhopadhyay appears to have limitless boundaries to self – for example he enjoys “when a little girl’s giggles colour the walls and ceilings with rainbow foam when she is amused by my echolalia because I am a mirror to her words” (p.217). I wonder how a parent can offer containment to a child when it is so hard to observe what they sense, help them understand what this may mean and what we feel about it (Sorensen, 1997). Containment helps make a situation less anxiety provoking for a child, it means that “the adult takes in the feelings and projections of the child and then thinks about them, and then conveys to the child a sense that these are “bearable, understandable and meaningful” (McLaughlin and Holliday, 2014, p.98). (Mukhopadhyay (2011) himself writes that “education is that component which brings in a meaningful relationship between the happenings around us and how our senses experience them”  (p.213).

48 Leave a comment on paragraph 48 0 Mukhopadhyay (2011) also transcribes meaning onto all objects seen when he gets his diagnosis of autism but doesn’t understand how the literal descriptions of his condition apply to the outer world. He groups together other objects that have autistic traits – the curtains that flap, the leaves that could not imitate the psychologist, or play with blocks: “they too could not talk. I wished to tell the curtains and the leaves they, too, were autistic” (p28). I find it remarkable how he reaches out for connection in his ‘speechless’ world. Tipton (2017) too, a more understated portrayal, also relies on her sensory world. “I see, feel, hear and taste everything! I think I do more than most people use their senses.” “My feeling is my best part of me because I good at it. Like to watch people and I can feel what they are thinking” (p.24).

49 Leave a comment on paragraph 49 0 In each of these books, the mothers show great belief and perseverance in contacting their child’s inner world, experienced so uniquely as explained. They are able to look beyond what is presented in front of them, to hope for a different story for their child. Similarly, the ‘impression’ these books leave their readers with is more than the words themselves say; as Bochner and Ellis (2016, p.65) explain, in texts many matrices of experience exist because “concrete action, dialogue, emotion, embodiment, spirituality and self-consciousness are featured in relational, family, institutional, and community stories, themselves revealed through action, feeling, thought and language”. Todres (2007, p.20) writes “understanding comes through ‘visiting’, even through ‘suffering’ the unsaid…..

50 Leave a comment on paragraph 50 0 [which brings us to the]

51 Leave a comment on paragraph 51 0 notion of embodiment as the messenger of the ‘unsaid”. (Embodiment in psychotherapy is considered in depth by Wiederhorn (2015) and Totten (2003)). I see this as symbolic of intuitive, subjective and unarticulated knowledge which new epistemologies such as auto-ethnography, critical reflexivity and embodied enquiry offer a way to capture in research (Etherington, 2016; Todres, 2007; Wall, 2006; Westland, 2009).

52 Leave a comment on paragraph 52 0 Conclusion

53 Leave a comment on paragraph 53 0 Just as “auto-ethnography can be judged in terms of whether it helps readers communicate with others different from themselves or offers a way to improve the lives of participants or readers” (Ellis, Adams and Bochner, 2010), so the validity of this paper is measured by asking how useful is this account? What does putting together representations of their books as a counselling-practitioner researcher offer a practitioner of any kind working with a child who is non-verbal, especially one who has not yet perhaps mastered using a communication device? In bearing witness to this lived experience, can we as practitioners help other children gain agency (Bochner and Ellis, 2016; (Kellett, 2011))? Arguably, these young people write to elicit empathy and participation by the reader to reflect both on what is heard and felt, in relation to what one expected to hear and feel. This is an accepted part of becoming a psychotherapist, as Etherington, 2004 (p.109) writes: “as counsellors we usually accept that we are changed by the encounters we have with our clients: we are impacted upon in their process of change and our relationship can open us up to parts of ourselves, hitherto unknown or only dimly know” (Etherington, 2004, p.109). How readers experience this account is essentially a personal endeavour: “to comprehend a human experience, whether one’s own or that of another, is to bring it into the light of one’s own possibilities” (Todres, 2007, p.10).

54 Leave a comment on paragraph 54 0 I wonder, if readers become open to sharing the young authors’ experiences and knowledge, and experience their own intuition and embodied response, might they connect in a new way with the children who struggle to talk. Or if we read in these testimonies of relational trauma how might we proceed in an ethical way that does no harm? I am reminded of Tipton’s  (2017, p.9) words: “past time I just thought without sharing”. It is a challenge for counsellors, teachers and researchers to reflect on the said and unsaid of these texts, to find a way to meaningfully share the lives of children with disabilities who are non-verbal and waiting to learn more about how to communicate.

55 Leave a comment on paragraph 55 0 References

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