Today I was contacted by a woman here in New Zealand, who wanted to share her research project with me – specifically she wanted to hear my thoughts on what she had written. The project written by Catherine Rivera-Puddle, is entitled “Loudly Silent: Experiences of women who have a child with Autism Spectrum Disorder in Social Groups.” It was completed in 2012, and can now be publicly accessed via this link: www.autismnz.org.nz/…/36156/Loudly_Silent_-_Research_Project.pdf
Having read it, I think there is much of value in there, lessons that we can take away from her research, and insights to what it means to be a mother, most particularly to be a modern mother of a child with autism. There is much I could write spinning off from the subject matter, but there is one particular lesson I want to share with you for now: The importance of our own autism parent narratives. (Just a note that this discussion evolves from Catherine’s work, and is not a simple restatement of her views – I give her credit for the material that lead to this post, and take personal responsibility for the additional views I express in this post.)
Catherine’s work forced me to reassess something that I have written on many times, without realising the deeper issue at play: The stories we tell ourselves and others to make sense of our lives as parents of autistic children. Some of us do see ourselves as Super-Mums, some see ourselves as heroes or martyrs or survivors, some as victims (be it of vaccines or society or autism itself), some as destined into our roles. We create a narrative in which we fit – perhaps one that is already constructed for us in part by society or by the autism community, or perhaps one we have shaped for ourselves – as we make sense of what and who we now are once autism has completely turned our lives upside-down. Whatever that story may be, it serves some important function.
The stories that ready-made society already presents to us – where for example a mother’s worth and success can be judged by her child’s behaviour – don’t make sense for most autism mums, and indeed isolates, marginalises, stigmatises us. I feel that we are forced to directly confront and almost rebel against those standard narratives. We have to come up with an alternative which not only better reflects our lived realities, but also doesn’t automatically label us as outcasts that should be avoided and shunned.
But the stories we come up with to make sense of our world, can put us in direct conflict with other members of our own autism community – with others who have chosen their own story which can’t seem to coexist with ours. Sometimes that conflict arises because the version of autism required to uphold it is scientifically or empirically inaccurate, but more often I see parents under attack for not conforming to someone else’s version of the “one right way” to approach parenting an autistic child. We have to say the right words, think the right things, support the right charity, attend the right conferences. If we fail to meet this standard, we can and do find ourselves under attack. Maybe we’re not sacrificing enough, or we’re sacrificing too much, and either way we have fallen short of the ideal autism parent. Just when you think you’re going to be safe as you shift away from the judgements and impossible standards of mainstream society, you find yourself damagingly in conflict with the judgments and impossible standards of the autism community.
I think that there is inherent value in our (often conflicting) narratives though – that even when they can’t piece together tidily or we can’t understand or accept someone’s version of what it means to be an autism parent, that we still need to appreciate the importance of people forming these narratives. For the mental well-being of a parent – and therefore necessarily for the well-being of the child – we should appreciate that the narrative any one person has formed to make sense of their new reality as an autism parent, is one that is helping them to get a foot-hold in their lives and to therefore get on with what needs to be done. We need to allow them the mental peace to move beyond mainstream society’s view of what is acceptable and what constitutes a parent as a failure, and replace it instead with a version that allows them space to breathe and to simply exist; to not be living their lives in endless depressing unhelpful reference to a standard that is alien to the autism experience.
Is there a place for a war of narratives – where parts of our community fight to make theirs the dominant voice, the dominant version of reality? I think that’s quite natural and maybe even necessary – I do think it is healthy to confront our views and question our assumptions, I think the ever-shifting understanding autism as a condition in itself necessitates these debates. However I think – considering the huge diversity of autism experiences – that we need to accept a corresponding diversity of narratives. The story I would have told you about how I made sense of and lived alongside autism when my child was severely affected, is incredibly different from the version you’ll get from me now with my now milder affected child. Did my story “evolve,” or grow-up with my deeper knowledge and understanding over the years? Maybe, or maybe it just shifted alongside my reality and the original narrative I’d formed no longer accurately reflected my life. And really what’s so wrong with that – if the narrative I was living with assisted me to make sense of my world and to get through each day, if it served a function that helped hold me mentally together in the face of public rejection and judgment – then surely it’s performing some good on some level that also benefitted the child.
And on that point, I do think that many make an unjustified leap in reasoning where autism narratives conflict; I think many judge a parent’s love for their child based on the narrative that parent has adopted. I also think that is extraordinarily cruel. You can find instances throughout the comments on my blog (and many more that I never publish because their cruelty is just so profound) where a parent is accused of not loving their child because their version of what it means to be a parent of an autistic child doesn’t match someone else’s.
It always shocks me when people make this leap, no matter how many times it happens. I think of it now as almost an intense defence mechanism – when someone feels their version of reality and of understanding autism in lived experience is under attack, and they have fought so hard to build up their version in the first place to replace mainstream society’s version, then it makes sense to lash out to protect it from non-conforming alternatives; if your way of learning to live with and love autism is not the same as someone else’s you have the choice to accept that diversity or to fight it, and I think the instinct to fight it in this (and other hurtful) ways is indicative of a vulnerability – a vulnerability of an unstable perspective that has trouble standing firm in the face of alternatives.
Or not… that’s just one way I view those ridiculous “you don’t love your child then” attacks. I find it easier to view people who makes these attacks as being defensive and reactionary, rather than somehow actually believing that you can judge a parent’s love for their child based on how they are working to come to terms with autism.
Personally, I acknowledge my evolving narrative, and I acknowledge and respect the diversity of autism-parenting narratives. No I do not think they are all equally “valid” (eg scientifically, empirically) or as healthy as they could otherwise be for the child and parent, but they nevertheless play an important role in that person’s ability to make sense of, accept and get on with their daily lives, and reflects the enormous diversity of autism and how it is experienced person to person. Mainstream society’s version of a good parent can’t make sense of my autism parenting experience, and neither do many of the other autism-specific versions I have encountered over the years, and that’s OK. You don’t have to hold the exact same perspective as I do about autism, for your own experiences and views to also be relevant, important, and valid in your world. It’s OK to think differently than I do… but perhaps my acceptance of that type of diversity is just itself an expression of my own narrative.
Lots to think about anyway, and I will continue to think it through – as usual I’d love to hear your own perspectives.
A final note of thanks to Catherine Rivera-Puddle for her thought-provoking research project, and one more encouragement to my readers to consider reading her work for yourself, the link again is here: www.autismnz.org.nz/…/36156/Loudly_Silent_-_Research_Project.pdf