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.