Mothers

In the news recently, a claim that ‘missing microbes cause childhood cancer’. New research, apparently, suggests that a child’s immune system can become cancerous if it is not exposed to enough bugs early in life:

https://www.bbc.co.uk/news/health-44199844

Although we are reassured that ‘This study is absolutely not about blaming parents for being too hygienic’,  imagine the impact if you are the mother of a child with cancer? As well as dealing with the distress of witnessing your child’s illness, you are offered the possibility that your own care-giving practice might have been responsible. ‘Another way to knock mothers’  I thought to myself when I read the report. I’ve about had my bellyful recently…

Mother blame

Last semester I was asked to take a seminar group for a module which focuses on psychological perspectives on educational processes. I don’t usually teach on the module and I found the opportunity interesting and often valuable. One thing I was struck by, however, was how often mothers are blamed for poor educational outcomes.

I was already aware of the link between early literacy and maternal education, a relationship which tends to act as an indicator of socio-economic class.  Last semester, however, I encountered research which linked  child outcomes to psychological factors such as maternal self-efficacy, maternal self-esteem and maternal resilience. While these may also be associated with social class, I found it interesting that there was no mention of paternal well-being; rather than associate poor outcomes with the broader context of home, they were laid firmly at the feet of the mother.

As well as linking mothers to outcomes in relation to child development and achievement, research studies have suggested a relationship between mothering and a child’s experience of school. Studies of bullying, for example, have suggested that ‘maternal hostility’, ‘maternal mental health’, ‘maternal demand’ and early motherhood all positively correlate with a child ‘having a participant role in bullying behaviour’.

A framework of ‘cumulative risk’ identifies ten key factors which affect educational outcomes, four of which focus explicitly on mothers: mother-child interaction during infancy; maternal mental illness; maternal education; and maternal anxiety (the other factors involve  structural risks, such as family size and minority ethnic group, and circumstance, such as life events and family support). Mothers have also been blamed for not doing enough to assuage educational disadvantage;  not only do they comprise 40% of the cumulative risk to children, mothers are the key  to protection as ‘maternal resilience’ is identified as most likely to offset risk.

Had I been resilient when my children were young, I asked myself?  Was I emotionally available through those difficult post-diagnosis years?  Did I control my anxiety about the future? Make appropriate demands on my children?  Had I kept my spirits up and sense of identity intact? I couldn’t, in all honesty, answer Yes to any of these questions…

Bettelheim and beyond

Most mothers with a child who has been diagnosed autistic hear about Bruno Bettelheim’s ‘refrigerator mothers’ at some point. Even though we are assured his work is now discredited, for the mother of a newly-diagnosed child it is very difficult to encounter Bettelheim’s claims. I certainly experienced them as cruel following Dylan’s diagnosis: I was doing everything I could to support my child, yet here I was being framed as the problem.

You’d think this was a thing of the past. In recent years, however, a new form of mother blame is gaining currency. Mothers (for it is typically mothers, not fathers) are framed as ‘infantilising’ their autistic children by over-protecting them and failing to recognise them as autonomous individuals. This is a discourse which has emerged in tandem with a commitment to developing independence, an agenda freighted by the voices of self-advocating autistic adults.

Two assumptions seem to be at work here. The first is that a non-autistic mother of an autistic child will necessarily privilege the neurotypical and try to ‘fix her child up’ and/or be over-protective and infantilise her child.  Allied to this is the suggestion that mothers who are not diagnosed as autistic themselves have no right to speak for their autistic children due to their lack of understanding of autism.  A recent blog by Paula Sanchez refers to the “warring factions of ‘autism moms’ and autistic activists”. In the article, Sanchez caricatures a neurotypical  ‘autism mom’ and an ‘autistic mother’:

https://autisticmotherland.com/2018/04/20/from-autism-mom-to-autistic-mother/

Sanchez  urges  ‘autism moms’ to ‘prioritise your child’s autonomy over and above everything else’  and to encourage their autistic identity as part of the process of self-advocacy.  While of the view that non-autistics can probably never understand being autistic, however, Sanchez acknowledges: “it wasn’t working out I’m autistic that influenced my parenting. It was much more that as I became more confident as a parent I became more able to do what my son needed. I no longer felt like I had to perform some idealised version of the ‘good mother’.”

Who speaks?

As the mother of a non-verbal autistic man I find it useful and often illuminating to hear the testimony of autistic adults who self-advocate.  Their voices give me new ways of thinking about Dylan and how he might experience the world. The demand by autistic self-advocates for ‘nothing about us that isn’t by us’, however, challenges parents (such as myself) who advocate for and on behalf of a son or daughter.

Once again I find myself struck by the complexity of the intersection of intellectual disability with autism. As someone who lacks mental capacity, my son is not able to take part in the conversation; not only does he not have a ‘voice’, he is unable to make informed decisions about his life.  As I have argued elsewhere, concepts such as ‘independence’ and ‘autonomy’  take on a different shape when viewed through the lens of intellectual disability.

So who should identify Dylan’s best interests? Who speaks for Dylan and other autistic adults with intellectual disability? Sanchez acknowledges, in the post referred to above, that: “My autism does not give me some special power to intuitively know how to parent and support other people’s autistic children.” The fact I don’t have an autism diagnosis might prevent me from understanding some aspects of Dylan’s experience,  but the deep and enduring relationship I have with him as a mother must surely have heft? And, as I have argued elsewhere, the alternative to advocacy for those with intellectual disability is not self-advocacy, it is silence.

Liminal mothers

Some academics (mothers of disabled children themselves) have questioned the assumptions which have been made about the role of parents in a disabled child’s life. Ferguson (2001) argues that parents carry their child’s impairment as part of their own lived experience and are therefore well placed to advocate for their disabled children and bring about positive change in their lives. Similarly Kelly (2005) observes that parents ‘act as experiencers, interpreters and agents’ through their intimate connection to the experience of their disabled child. Parents’ embodied experience of care-giving is not ‘second-hand knowledge’ of disability, Kelly argues, but rather a ‘partial knowledge’  which allows parents to share some of their child’s experience and meaning-making.

Ryan and Runswick-Cole (2008) have described the position of mothers of disabled children as ‘liminal’, rather than partial. They argue that mothers who are not themselves disabled must operate in a landscape of ‘oppressive mothering ideologies and disabling environments’.  Because of their distance from mothers of non-disabled children, as well as their tenuous position within the disabled community, non-disabled mothers of disabled children occupy a liminal space. Ryan and Runswick-Cole refer to the resulting ‘difficult and contentious debates about the role of non-disabled people within the lives of disabled people’ and the way in which ‘the actions of mothers have been interpreted as constraints within their children’s lives’.

It is interesting that the two concerns highlighted by Ryan and Runswick-Cole  – advocacy and autonomy – are the same as the issues identified in this post, written ten years later. It seems the current wave of mother blame may have been a long time gathering. In their 2008 paper Ryan and Runswick-Cole suggest that one of the reasons mothers might seek diagnostic labels for their children is in order to shift the discourse from ‘mother-blame’ to ‘brain-blame’.  While this may have been the case ten years ago, particularly in relation to autistic spectrum conditions, there has been a significant shift in the discourse to a celebration of neurodiversity and the claiming of autistic neurology as a vital part of self-identity. Against this backdrop, perhaps, there is a tendency to reposition blame (for a perceived lack of independence and the appropriation of voice) with the mother.

Liminal sons and daughters

Although I am uncomfortable with the way in which it is the mother, rather than father, who is subject to surveillance and criticism in relation to the ability to parent a disabled child, I am not averse to critical feedback and scrutiny. I often wish it were kinder, more supportive and more sympathetic. I would also prefer those without experience of parenting (even if they are themselves autistic) to acknowledge their own partial knowledge. Sanchez, in the post referred to above, makes some helpful observations and suggestions for building bridges between the ‘warring factions’ of autism parents and autistic adults.

What is still absent from these conversations, however, is any acknowledgement of autistic adults with intellectual disability. If the position of mothers of disabled children is liminal, then the space occupied by adults with intellectual disability is a similar limbo. As I argue above, the position of autistic adults who lack mental capacity is often unrepresented and overlooked. In challenging the ability of parents to advocate for their disabled sons and daughters, I would argue, we are putting the welfare of adults with intellectual disability at risk.

There is a legal system in the UK for the protection of the financial and welfare interests of those who lack capacity. It is a little-used system and one which is not easily accessed or much discussed.  In the last year, increasingly frustrated by the position of parents in relation to an adult child with an intellectual disability, it has become clear that it is a system I need to engage with.  So, once I’ve finished work and the football is over, my plan is to start the process of applying to the Court of Protection to be Dylan’s Deputy.  More about this in a future post…

Note:

The claims in the section of the post entitled ‘Mother Blame’ are from chapters 8, 9 and 11 of Woolfson (reference below). The images are sourced from the internet and to the best of my knowledge are copyright free. I’ve been unable to identify an artist for the image of the ‘floating woman’ but it was used as part of a lecture series on liminal space by Dr KD Farris. The image of the floating man is ‘Liminal Space’ by Nicholas Scarpinato.

Sources:

Barrett, E. (2017). Tied to the Worldly Work of Writing:  parent as ethnographer. Journal of intellectual Disabilities.  https://doi.org/10.1177/1744629517741008

Ferguson, P.M. (2001). Mapping the Family: Disability studies and the exploration of parental response to disability. In G.L. Albrecht, K.D. Seelman & M. Bury (Eds.), Handbook of Disability Studies (pp. 373-395). Thousand Oaks, CA: Sage.

Kelly, S.E. (2005). ‘A Different Light’:  Examining Impairment through Parent Narratives of Childhood Disability. Journal of Contemporary Ethnography, 34, (2) 180-205.

Ryan, S & Runswick-Cole, K (2008). Repositioning mothers:  mothers, disabled children and disability studies. Disability & Society, 23 (3) 199-210

Woolfson, L.M. (2011).  Educational Psychology:  The impact of psychological research on education. Harlow:  Pearson

 

Capacity And Voice: from silent subject to co-author

I was surprised and delighted when someone I had met only virtually, via this blog, asked whether I would be interested in contributing to this year’s National Autistic Society Professional Conference. The conference organisers were keen to involve parental perspectives and to provide a space for the stories of those affected by intellectual disability as well as by autism; would I be able to talk about transition to adulthood in the context of someone who is ‘learning disabled and non-verbal’?

The invitation to speak at the conference came in August last year. In February this year, overwhelmed by marking and the demands of the workplace, I feared I had been too hasty in accepting.  Unable to meet the deadline for the inclusion of my presentation slides in the conference proceedings I suggested I bring them as a handout. ‘How many copies will I need?’ I asked the conference organiser. ‘540 should do it’ she replied.  I stared at the email in disbelief. Could that zero be a slip of the finger?

WP_20160302_001So it was with some trepidation that I arrived at the Telford International Centre earlier this month. The rally-sized hall with two enormous screens and professional sound and lighting engineers were all the evidence I needed that the zero hadn’t been an error. My session was scheduled as a plenary presentation at the end of the second and final day (rather than to a smaller audience as part of one of the four conference strands). Although I am used to delivering presentations and am generally a confident public speaker, this was easily the largest audience I had faced.  As I hadn’t attended an NAS conference previously, this  was also an audience with which I was unfamiliar.  My anxieties were therefore twofold: not just whether I would hold my nerve but if I had pitched my material appropriately.

I had spent some time, on the run up to the conference, pondering the angle for my talk. Although I was happy to tell a single story,  I wanted Dylan’s specific experience to illustrate issues which might be faced by autistic adults with intellectual disability more generally. My instinct to do this arose from my work as an academic where ‘single stories’ are used to illuminate processes and ideas. I was conscious, however, that autism is not my academic field:  I would be presenting material arising from my craft knowledge as a parent rather than from research. How, then, could I identify a conceptual framework against which the experiences of others might be considered?

Happily, in the run-up to the conference I happened on this (as is often the case, in the most unlikely of places). As the mother of someone who is ‘non-verbal’ I enjoy reading books about silence, an interest which sometimes takes me into theological literature (this post, for example, references the use of silence and hand signs in monastic communities).  In the weeks before the conference I had been reading The Edge of Words by Rowan Williams (the former Archbishop of Canterbury) and it was here I would find my framework for talking about the transition to adulthood of a learning disabled and non-verbal child.

*

Rowan Williams’ interest in silence is in the context of his relationship with God.  In exploring the theological implications of silence, however, he considers other experiences of silence including that of non-speaking children and adults with intellectual disability and autism. Autistic people who lack mental capacity, Williams argues, have ‘a point of view and a capacity to create working symbols’ ; our task, he notes, is to make the space to allow these symbols to ‘surface and connect’.

Some of Williams’ illustrations of this process were familiar to me as they are based on the ideas of Phoebe Caldwell whose work I admire. I found Williams’ development  of these ideas compelling, however; both the poet and the autistic child or adult, he suggests, inhabit difficult territory where they are lost for words, pushed into extremis in the search for a language.  Putting language ‘under pressure’ in this way encourages the use of  poetic practices such as symbol and association to resolve the difficulty. Thus both poets and those with ASD (specifically the ‘non-verbal’) trade in paradox and metaphor.

As a poet as well as a mother I found this suggestion attractive. Dylan, I have often contended, is a poet by nature. Many of the associations and connections he makes in his search for ways of communicating would grace any poem (I give some examples in this post). Williams’ observation therefore made sense to me and helped me to an observation that would become the cornerstone of my presentation: that in order to ‘hear’ Dylan’s voice during transition I had to draw on my identity as a poet as much as (perhaps more than) my sense as mother or academic.

To illustrate this I selected five ‘scenes’ from Dylan’s transition. Some were examples of when I had ‘failed’ to hear Dylan’s voice (perhaps because I had been too rigid in my thinking) and others of times when Dylan or I had made creative connections and communicated more effectively. In scene three, for example, I suggest that Dylan might use ears as a symbol of trust and in scene five I give an example of the application of metaphor (getting lost) to my own decision-making. Transferring poetic tactics to everyday practices is something Rowan Williams acknowledges may be efficacious. While not wanting to suggest gut-knowledge as the basis for all decision-making my presentation concluded:

  • ‘Giving voice’ to the non-verbal requires us to be open to instinct and intuition as well as to logic and calculation.
  • Can involve listening to a young person’s behaviour rather than involving them in formal decision-making processes.
  • Requires us to pay attention to silence and absence of language as well as to excess.

As I put the finishing touches to my conference slides I considered ways of framing Dylan’s contribution to the narrative. Could I insert bracketed silences, indicating potential gaps in the presentation? Include a blank slide perhaps? These reflections encouraged me to review my assumptions about authorship. Previously I had thought of my material as an auto-ethnography with two subjects; now I realised the narrative also had two authors. The day before I left for the conference I changed my title slide: this presentation was no longer ‘For Dylan’, it was with him.

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References:

Phoebe Caldwell (2006) Finding You, Finding Me. Jessica Kingsley Publishing
Rowan Williams  (2014) The Edge of Words.  Bloomsbury