The Ever-Battling Narratives of “The Autism Parent.”

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 

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11 Responses to The Ever-Battling Narratives of “The Autism Parent.”

  1. Aunt Benjy says:

    Hi A&O,
    I’m not sure why, but your links don’t work for me…it looks like they should. I got to the paper by going here: http://www.autismnz.org.nz/about_autism/research and scrolling down.

    I’m wondering if some of these narratives are related to the ages of the mothers in question…I was 42 when I had my son, so I already had very little in common with the mothers at Plunket, playgroups and coffee groups. My opinion of their opinions was a bit ‘meh’ right from the start, and I have no interest in competitive parenting. If I had been 20, my feelings may have been quite different.

    I guess I am fortunate not to feel the need to be warrior mum, martyr mum or super mum. Because my son is constantly changing goalposts on us, I am fine with being “muddle-through” mum, and figuring it out as we go along. I also have a tendency to trust the professionals who work with my son, as between them, they seem to have performed some minor miracles. They have training, experience and good ideas, and I am grateful for them.

  2. Gayatri says:

    This might sound harsh, but my life and my kid, so my way. My son is on the lower end of the spectrum, with mild epilepsy, apraxia / whole body dyspraxia, and possible ADHD, in addition to his autism, all of which make for a not-so-pretty picture. I have long ago given up being Super Mum, or Wonder Mum. I am finally acknowledging that I don’t have to be put on a fake strong smile, or act like my son’s challenges are not a big deal, because they are. There are nights that neither of us sleep, and I am hardly able to get out of bed some mornings and make a pot of coffee, leave alone be Super Mum.

    I have since grown up enough to understand that I don’t have to attend every autism-related argument that I am invited to (and believe me, I seem to get invited to these a lot) !! I don’t have to explain to other parents why my son isn’t on a special diet, why we aren’t doing more therapies for him, why we don’t have him in a “proper school” (as opposed to our homeschool), blah blah blah. And I honestly no longer care if they don’t want to be “friends” anymore, because I am not “doing autism” the way that it is “supposed to be” done (whic seems to vary from parent to parent, and even from day to shining day).

    It is OK to be tired, to be overwhelmed, to even be cross / emotional / cry my eyes out from time to time. My life, my kid, his “version of autism”, and our lives. NOBODY’s business but ours. You’re welcome.

    • There’s nothing harsh or unusual in your opinion, many of us feel the same way. I’m glad you’ve found what works for your son and your family, and that you have the strength and confidence to stand up for what you know is right for him, it can take many years to get to that point. All the best in your own autism journey 🙂

  3. M.J. says:

    The stories we tell ourselves about life, isn’t that half the problem with autism? Each time we settle on a narrative of what our life is like autism comes around and changes the story. From the initial shock of the diagnosis and finding out that you don’t have a typical child to the roller coaster ups and downs of therapy to the constantly changing challenges of new behaviors, autism is a constant game changer.

    It seems to me that every time you get to a point of stability that autism has some little trick up its sleeve that changes the game again. Everything is finally under control and then the kids stop sleeping at night or start some new behavior at school, or make an advancement that blows all of the carefully created structure out of the water…

    None of that is even counting what autism means for the future. Will the kids be able to live independently or possible support themselves? Will we need to take care of them for the rest of our lives? Can we make plans and tell ourselves stories about what we will do when we retire?

    And yet I do agree with you that a narrative is very important. Without some sort of story to make sense of your life and where you are at it is extremely hard to deal with the daily reality of autism. I think a good part of the stress of being an autism parent is the discord between what we want our story to be and what our story actually is.

    And I have to say that when it comes to the conflicting narratives of autism, I find it ironic that the group that preaches that autism is just a difference and pushes for acceptance is the least accepting of different narratives of autism. On one hand they are asked to be accepted even though they are just “different” and on the other are extremely quick to tell you that your opinion about autism is wrong and that you must not love your children.

    • I love your commentary. Comments like this are part of what keeps me blogging – I put one thing out there and what I get back from some people stretches and challenges my understanding, or enhances it to another level. There is so much value in what you’ve said above. One particular sentence of note:

      “I think a good part of the stress of being an autism parent is the discord between what we want our story to be and what our story actually is.”

      I often find myself caught up in that discord but until now I hadn’t seen anyone who could quite capture what I’ve been feeling. I think that sentence does it very well. I’m tempted to write a post spin-off on that theme, if I do I will credit you appropriately.

      Thanks for sharing your thoughts.

  4. Very well stated. I find it odd that people want to look at autism through a one size fits all perspective when its impact is as varied as the people affected by it.

  5. Autism Mom says:

    Like Aunt Benjy, I am an older mom, nearing 50, and so the competition of younger moms is also not a huge driving factor for me. However, I am susceptible to the “mother’s worth and success can be judged by her child’s behaviour” thing – probably because as an older mom that is the culture I was raised in. You hit it right on the head when you say that Autism parenting is antithetical to that cultural bias.

    Like you, what I find mind-boggling is the judgment that comes from Autism parents towards other Autism parents. These folks are usually the first ones to leap out with the “if you’ve met one child with Autism you’ve met one child with Autism” banner, and then at the same time shaking their fists when someone doesn’t conform to their perspectives. The hypocrisy of insisting on individual approaches to children while demanding conformity is, in a word, bizarre.

    I usually chalk this up to a profound fear. There is so much we don’t understand about Autism, the lack of knowledge can be terrifying, and as a parent I know that I am frequently running scared. The difference is that I don’t think “group think” or conformity is really reassuring or will take away the fear. I still have to look the fear in the face on my own every day.

  6. Pingback: THE BEST OF AUGUST | Autism Mom

  7. Reblogged this on The Law is my Oyster and commented:
    An international theme.

  8. I wish that kid all the best. I wish him well. I also wish that perhaps when people throw out terms like “recovered” and “no longer autistic” to promote the vaccine-hypothesis and alternative therapies, that those people would give more details about how far “recovered” is from “cured”

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