Autism: it's NOT a tragedy

In my last posting I write about a common response on the part of parents to the discovery that their child is autistic. This response is to regard the discovery as a tragedy - where all their dreams, all their hopes evaporate. I ended by saying that I am going to come at the topic of hope and autism from a rather different angle - and the promised topic of the next blog posting may well have suggested some of what this direction might entail: “Every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence” 

But, before I get to that posting, I would like to share a response I've had to the previous one, quoted with the author's permission

…my partner was just diagnosed with ASD and his parents were no help at all during his assessment because they refused to accept that the child THEY raised could be autistic. You are absolutely right that to a parent having an autistic child can be seen as either their fault or a tragedy.

We suspect that our three year old may also be slightly autistic but whenever you tell a neurotypical person this may be the case all you get it “I’m so sorry.” To us, it’s not a tragedy.”

Autism: 'it's not a tragedy." This strikes me as an ideal way to think about autism - a thought for the day even, for today, the first day of Autism Awareness Week!

Thank you Dani!

Next time... actually this time! “Every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence”

Hope lost? (Hope-bearer 2)

Hope, by G.F. Watts (1886), Tate: information here

Where Hope is brought up in relation to autism, it is often linked to its loss. There is a pattern in literature on autism which sets out how parents of a child diagnosed as autistic find their hopes for their child evaporating. If there was any remaining source of hope this would, now, be in relation to a sought-after treatment or even a cure – some way to enable the child to leave autism behind. For example, as a young autistic woman in the 1980s and 1990s, Sue Rubin:

“did not give her parents much hope. She hit herself. Pulled hair. Bit her own arms and hands. She could not speak.”[1]

In his Life, Animated: A Story of Sidekicks, Heroes, and Autism, Ron Suskind reflects on the hopes and dreams parents hold for their young children:

“Presidents? Nobel Prize winners? Global celebrities? Super Bowl quarterbacks and prima ballerinas. It could happen. Or, more soberly, millionaire philanthropists or, at the very least, graduates of the finest colleges…then graduate school stars, most-recognized professionals in their field.”

Then he details the loss of such hopes for his son on the day he and his wife enrolled Owen at a school for disabled children and watched him interact with his new peers:

“How many of these breathless expectations…constitute the traditional allotment. Best way to figure that is to extract them, one by one, and smash them in the corner. The pile is quite high. And that’s what we do.”[2]

As the autism-rights pioneer Jim Sinclair outlines in a landmark address from 1993, such responses are common:

“[p]arents often report that learning their child is autistic was the most traumatic thing that ever happened to them. Non-autistic people see autism as a great tragedy, and parents experience continuing disappointment and grief at all stages of the child's and family's life cycle.”[3]

Such feelings of “disappointment” and “grief” – and the despair experienced by parents of autistic children point to a family life seen to be shaped by hardship – for the parents raising an autistic child and for the child themselves. Where Hope remains, it is a desperate Hope – a Hope in spite of the odds that appear to be stacked up against the child and their family. Such is the kind of hope expressed in the conversation Ron Suskind recalls between himself and his brother Len concerning the cost of various therapies for Owen:

“Worst case, we’ll have to support him for the next fifty years and thirty years after we’re dead”

He’s already there

“That worst case or likely case?”

“Somewhere in between, but we’re hopeful.”

Hmmm. He’s not one to discount hopeful…

“Hope’s not nothing,” he says, quietly to his reflexively optimistic little brother. “Just tough to run the numbers on it, that’s all.” (26).

Autism, indeed, is often discussed in terms of what is lacking on the part of an autistic person – in terms of what are seen as deficiencies – in how they fall short of behaviour and skills and ways of feeling and understanding others. For instance, the landmark research by Lorna Wing, which transformed how autistic people have been regarded and supported, defined autism in relation to where autistic people fall short. Wing set out a “triad of impairments” comprising difficulties that cohere in anyone diagnosed as autistic: to be autistic as defined by Wing is to experience difficulties in social and emotional understanding, difficulties in how to communication, and a lack of flexibility in ways of thinking and behaving.[4] 

More recently, among the characteristics of autism detailed in the current – fifth – edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM–5), the go-to handbook for diagnosing and managing psychological conditions, are “communication problems” and “difficulty relating to people, things and events” (emphases added).[5] Autistic children, then, are regarded as persistently needing to face with things that they supposedly find hard. It is seen as hard for them to behave in a manner deemed suitable to wider society – and some forms of behaviour cause harm – to themselves when, like Sue Rubin as detailed above, they cause injure themselves and to others when, for example, they attack other children or family members of strangers.

Delving into studies of the hardships faced by autistic people can enable a picture to be built up of a life of suffering and difficulty. An autistic child might well feel isolated from those around them. Autistic children might find it hard to work out what others are feeling or thinking, and they might also find it hard to read what others are experiencing. They might also find it hard to know what to do or say in any social situation. While their non-autistic peers develop skills at starting or maintaining conversation, autistic children might well remain silent or give only short or inappropriate responses. With developing a rapport with others being so hard, forming – and retaining – friendships can be hard even though an autistic child might long for the company of others. Alongside finding it hard to communicate with others, and to socialise with others, comes other challenges, including finding it hard to deal with changes in routine and preferring, instead, set, repetitive routines.

Autistic children might also find it difficult to conceive of the future, making it hard to envisage how a particular thing they do or say might have long-term consequences. Indeed, recognising that the present impacts on the future can be a difficult lesson for an autistic person. Added to this, for autistic children, understanding the ‘bigger picture’ can be difficult – and indeed they might well zoom in on particular details instead. Added to all the above, an autistic child’s experience of the world might be an intense one – thanks, perhaps, to possessing heightened sensory experiences combined with finding it hard – or impossible – to filter out background noise. To be an autistic child – or indeed an autistic adult – can be to experience bewilderments, sensory overload, isolation and frustration which can, in some cases, lead to moments of violence against oneself or against someone else.[6]

Looked at from this perspective, it is not difficult to see why the hope expressed by parents of autistic children is often hope for a time when the child’s behaviour stops looking autistic – a time when, indeed, they are divested of autism – cured even. In relation to such a way of viewing autism, activities such as the ones I am developing might be understood as part of attempts to enable autistic children to rise above the hardships they face – to be able to understand others better – to understand how the present can turn into the future for instance or, for example, to manage the sensory overloads that can lead to anxiety or even a meltdown. And, indeed, I am concerned with all the above – and more. But the activities I am developing are not coming from a view of autism as comprised of deficiencies and as made up of problems in need of solutions. The hope I am seeking is not hope for someone’s autism to be made less ‘severe’ or for someone to be somehow recovered from autism. The activities I am developing are geared towards supporting autistic children as they engage with the world around them.

The activities are also geared, however, towards promoting what it is to experience the world as an autistic child. They are informed, too, by the shift from the “medical model” of disability which say disability as a disorder that affects particular individuals to the “social model,” from which perspective, it is not disabled people who need to adapt to fit society – it is society which needs to change to accommodate disabled people.[7] 

Autistic children, from such a perspective, need to be accommodated by a society which stops regarding them as deficient and as in need of interventions to enable them to ‘fit in.’ The hope I am going to explore comes out of the hope for a better future for people who think and behave “differently.”

Coming next: “Every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence”

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[1] Sue Rubin and Julianna Margulies, Autism is a World, San Francisco: Kanopy Streaming, 2014.

[2] Ron Suskind, Life, Animated: A Story of Sidekicks, Heroes, and Autism, London and New York: Kingswell 18, emphasis in original.

[3] Jim Sinclair, “Don’t Mourn for Us,” Autism Network International (ANI) website: http://www.autreat.com/dont_mourn.html   (accessed July 21, 2019; originally published in Our Voice 1.3, 1993). On Jim Sinclair, see also Steve Silberman, Neurotribes: The Legacy of Autism and How to Think Smarter about People Who Think Differently, London: Allen and Unwin, 2015, 432–441, 445–449.

[4] See, esp., Lorna Wing, “Autistic Spectrum Disorders,” British Medical Journal 312.7027, 1996, 327–328, and Lorna Wing, The Autistic Spectrum: A Guide for Parents and Professionals, London: Robinson 2002 (updated edn.; first edn. 1996).

[5] “What Is Autism Spectrum Disorder?” American Psychiatric Association, https://www.psychiatry.org/patients-families/autism/what-is-autism-spectrum-disorder (accessed Jan 17, 2020).

[6] On the challenges faced by autistic children, and autistic people more broadly, see e.g. Stuart Powell and Rita Jordan, “Rationale for the Approach,” in Stuart Powell and Rita Jordan (ed.), Autism and Learning: A Guide to Good Practice, London: Routledge 2012 (first edn 1997), 1-12. See also, from the perspective of an autistic person looking back on the hardships experienced by herself as a child, and on her experiences as a young adult and adult, see Alis Rowe, The Girl with the Curly Hair: Asperger’s and Me, London: Lonely Mind 2013 and Alis Rowe, The Girl with the Curly Hair: What I have learned about life, London: Lonely Mind 2019.  

[7] See e.g. Thomas Campbell, Fernando Fontes, Laura Hemingway, Armineh Soorenian, and Chris Till, eds., Disability Studies: Emerging Insights and Perspectives, Leeds: The Disability Press, 2008; Angharad E. Beckett, “Anti-Oppressive Pedagogy and Disability: Possibilities and Challenges,” Scandinavian Journal of Disability Research 17.1, 2015, 76–94.

Childhood: a mythical time… (Hope-bearer 1)

Childhood is a mythical time: a time where the imagination can run free, a time of adventure, a time when anything might seem possible. Childhood can be a time of hardship too – a time of not just the “most beautiful” experiences, but also the most terrible. I quote here from the booklet that accompanied Our Mythical Hope in Children’s and Young Adults’ Culture... The (In)efficacy of Ancient Myths in Overcoming the Hardships of Life, the conference that brought myself and fellow researchers into classics and children’s culture to Warsaw in May 2017.[1] The experiences of childhood, the booklet – authored by the conference organiser, Katarzyna Marciniak – continues, can “provide or deprive us of a supply of Hope for years to come.” My particular contribution to the conference was a paper on Hope as it applies to a particular group of children – autistic children.[2]

By that time, I had been building up a project on autism and classical myth for almost a decade, and I was in Warsaw to share my progress with a set of activities I was developing as part of a wider five-year European Research Council-funded project, Our Mythical Childhood... The Reception of Classical Antiquity in Children’s and Young Adults’ Culture in Response to Regional and Global Challenges, which had begun several months earlier, in October 2016, to chart the place of classics in children’s and Young Adults’ culture.



Fig. 1 - In Warsaw for Mythical Hope -
with Sonya Nevin (middle) and Steve Simons (right)

My autism and classical myth project started out with a goal to ‘reach’ autistic children through classical myth. This was after I learnt, during a meeting with a Special Needs teacher in a UK secondary school, that autistic children often enjoy classical myth. I began to wonder why this might be the case, and whether I could contribute something to existing materials used by teachers: as someone whose interests in classical myth stems from their childhood – and who had been turning classical myth into an area of expertise throughout my career as an academic.

I was vague as to what that ‘something’ could be at first. I discovered classical myth at the age of about ten - from the book illustrated below, here with a suitably Herculean cover . The discovery was a formative a moment in my childhood; classical myth was my refuge, an interest that took me into a world at once vastly different from my own, and yet one which ‘spoke’ to me.

Fig 2 - Tales of the Greek Heroes -
cover showing Hercules and the Lion

In the wake of the meeting with the teacher, I began to wonder whether I could harness in some way my love of myth as something with many patterns, even rules, and yet as something elusive. I started contacting academics in several disciplines, including psychology and education, and also professionals working in various ways with autistic children, and I kept being encouraged to push forward. For instance, the Special Needs teachers and dramatherapists I spoke with consistently said that they were repeatedly looking for new resources and that stories of various kinds provide valuable sources for classroom materials. This led to an unexpected turn in my career towards becoming interested in autism and disability more broadly.
 

I started a blog, Mythology and Autism,[3] in early 2009 to report on my progress. I decided to begin blogging because I was aware that I had many other projects ongoing, but by blogging as and when I thought I had something to share, I could at least report sporadically on my progress, while opening up my ideas to the ongoing self-critique that blogging fosters. In the first few years after 2009 – indeed, until the European Research Council-funded project began in 2016 – I did, indeed, blog sporadically, often with lengthy gaps between postings.

Figs. 3-5 From Jason to Medea to Hercules -
some early images used in this blog

But, what happened, too, was that several specialists who work with autistic people made contact with me and, by the time the funding bid to the ERC began, I had made several valuable and valued contacts. By this time, I had also written around 20,000 words around aspects of autism, myth, and disability studies, including on the possibility of viewing stories associated with Perseus through an autistic lens, on the potential for the Aristotlean theory of catharsis as used in dramatherapy in relation to autism activities, and on how the hero/monster metaphor might inform the quest for disruptive pedagogies in higher education.

During this time, this interest in autism and classical myth led to some unexpected interfaces between my various roles in the institution where I work: the University of Roehampton, London. For instance, I became a departmental disability co-ordinator, and this enabled me to work closely with the university’s disability team. The blog provided a forum for reporting on this new direction in my practice, including a role in organising training for colleagues in supporting autistic students.

The chapter for Mythical Hope develops the Hope-themed exploration of autism and myth that I began in Warsaw in 2017. At that time, I had recently decided on the focus for a set of activities: the figure and adventures of Hercules. Since then, I have been developing the activities, consulting with specialists on them and on the principles behind them, and trialling the activities have been trialled in initial pilot studies with children at a primary school with an autism unit. At the time of writing, I am continuing to share my unfolding ideas via my blog while writing a book which presents the activities.[4] During the time I have been planning and developing the activities, my approach has been shifting from exploring how myth might ‘reach’ autistic children to questioning what it, in fact, means to ‘reach’ autistic people and to reaching a deeper appreciation of the role of classical myth for autistic children.

In the chapter, I shall be exploring the role of Hope in the activities against a background of what Hope, and specially a “mythical” Hope, might signify in connection to autism and to autistic children in particular. I shall also be framing my discussion in relation to the conference’s – and now the Hope book’s – subtitle by looking at the efficacy of classical myth in dealing with the hardships children encounter. But, also, I shall take on board the bracketed “in” before “efficacies” in the title of the 2017 conference and I will discuss whether myth might be inefficacious too. In addition to any potential to resolve hardships, might it actually contribute to hardships for instance?

I shall be discussing where Herakles/Hercules comes in in this regard. Hercules is among the most problematic – perhaps even the most problematic – to present to children,[5] any children, autistic or otherwise. Hercules is the hero whose career is a career of victimising others: from beasts in the wilds, to the succession of women in the Hesiodic Catalogue of Women who encounter, sexually, his bia (“force”, “violence”).[6] But, as I shall argue, Hercules is a figure from classical mythology who can particularly ‘speak’ to an autistic experience.

Coming next: “Hope lost?”

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[1] The chapter I’m currently completing, and critiquing here, has its roots in the paper I delivered in May 2017 at the Our Mythical Hope conference. Here, I made an initial case for the potential of Hercules as a topic for the first set of activities I was to create as part of the project Our Mythical Childhood... The Reception of Classical Antiquity in Children’s and Young Adults’ Culture in Response to Regional and Global Challenges. I would like to thank my fellow participants for their comments, both at Warsaw during the conference and subsequently, including Helen Lovatt, Sonya Nevin, Eduardo Pecchini, and everyone who took an interest in my still-emerging hopes that episodes involving Hercules might become a subject of activities for autistic children. In the years since then, I am thankful for the comments from of specialists in areas such as Classics, Special and Inclusive Education, Dramatherapy and Music Education including Adam Ockelford, Anna Seymour, Leda Kamenopoulou, Lisa Maurice, Katherine Leung and Tom Figueira. Finally, I would like to thank Katarzyna Marciniak for support and vision and that has nurtured and anchored the hopes shared in this chapter.

[2] Throughout this chapter, I use terms such as ‘autistic children’ and ‘autistic people’ rather that ‘children with autism’ etc. I note the arguments in favour of descriptions including ‘children with autism’ and ‘people with autism,’ including in putting child first, before any conditions, but terms such as ‘autistic child’ conveys that autism cannot be separated from a person but is key to how they relate to, and experience the world and how they engage with other people. On various ways of talking about autism, see the overview of names for autism at National Autistic Society n.d., “What is autism?” https://www.autism.org.uk/about/what-is/asd.aspx (accessed March 16, 2020).

[3] Mythology and Autism blog, online at https://myth-autism.blogspot.co.uk (accessed July 21, 2019).

[4] Susan Deacy, Choosing with Hercules: activities using classical myth for autistic children.’ University of Warsaw forthcoming.

[5] Lisa Maurice, “From Elitism to Democratisation: A Half-Century of Hercules in Children’s Literature,” Journal of Historical Fictions 2.2 (2019) 81-101, esp. 86, 89-90 http://historicalfictionsjournal.org/pdf/JHF%202019-081.pdf (accessed March 17, 2020).

[6] Catalogue of Women 1.22 (ἠδ’ ὅσσαισι] βίη Ἡ[ρακλῆος,“all those with whom the bia of Hercules”), 117.9 (Auge), 133.12 (Nikippe).

Hercules: Bearer of Hope for Autistic Children? Re-introducing Mythical Hope

 T. B. Huxley-Jones, Joy of Life Fountain (1963), Hyde Park

"L'enfance
Qui nous empêche de la vivre
De la revivre infiniment
De vivre à remonter le temps
De déchirer la fin du livre"

"Childhood: who stops us from living it, from reliving it infinitely, from living by rewinding time, by tearing up the end of the book?"

Jacques Brel, L’Enfance

Here is what I am planning to do over several postings this month and the next – to straddle Autism Awareness Week in early April. Lately, I have been overhauling my chapter for Mythical Hope, the first of the books from the ERC-funded Our Mythical Childhood project. I am going to share work from this chapter – it was presenting Hope-themed material in the autumn of 2019 that got me to look in new ways at what I had previously written. Here I put my project again under an aegis of Hope, and I’d welcome feedback!

Coming next: "Childhood: a mythical time..."

From Mythology and Education to Special and Inclusive Teaching

This posting gives a quick update on what I’ve been doing in relation to autism and classical myth since the past posting – and I’ll say some things, too, about what I’m in the near future. The Mythology and Education conference at Cambridge, the topic of the previous posting, was wonderful – and soon I shall write up notes including the feedback I received from participants, not least on the possible fit between what I’m doing and Social Stories. For now, here are some photos including of some of the colouring in produced during the day.

Presenting the conference poster with Nanci Santos (left) and Robin Diver (right).
See also, above, the poster for the Network ACCLAIM: Autism Connecting CLAssically Inspired Myth

Getting going talking about the project

Keeping going while people begin colouring in...

As the note at the bottom says - and as I mentioned during the presentation -
I'll be writing a book on the activities, due for completing by the end of this year

Making Choices: brilliant! By Sarah Hardstaff

The next presentation that I had been due to give was to CIRSIE: the Centre for Interdisciplinary Research on Special and Inclusive Education at Roehampton. And I had been looking forward to the prospect of finding out what students, academics and teachers in Special and Inclusive Education thought about the activities. The event has been cancelled - or hopefully postponed – now that the University has stopped all face-to-face activities for the foreseeable future. And likewise the other events I was due to speak at this year have all also been put on hold or called off. However, one thing that I will be doing, at the end of this month, is to deliver a session for an undergraduate module on Special and Inclusive Teaching at Roehampton. My colleague Emily Rotchell asked me if I would do this earlier in the week and I didn’t hesitate to say yes. To date, Emily has added this blog address to the resources for the session – a session doubly out of my comfort zone – in terms of discipline and because I’ll be designing it for remote learning. If any of the students are reading this posting: hello! More from me soon!