Stories of autism and how they shape us

Here, in order to support clinicians' shift in thinking in relation to the Autistic experience and the work we undertake with children, we take the time to reflect on the stories we are told about ourselves and how these shape us. We also provide lived experiences from Autistic parents and professionals, about their experiences of their child's assessment process, and also their experience of discovering their own Autistic identity later in life and how that has helped shape their practice.

We all get told stories – as children, the bedtime story is a precious point of connection for both adult and child, enjoying closeness, sharing of imagination, providing a space for discussing ideas. As we grow older, we learn to read, and access more stories ourselves. We soon learn that stories exist not just in books, but in the narratives that society tells us about ourselves, others, the 'right' way to look, act and behave. These narratives are typically dominated by what is perceived to be 'normal behaviour' at that particular time, and frame how we see ourselves and our position in the world. There has been a much-needed shift in children's fiction written by neurodivergent authors, such as Elle McNicholl, featuring main characters who are Autistic or otherwise neurodivergent. These stories present a re-framing of Autistic experience, providing both an intensely enjoyable reading experience but also a springboard for discussion of how others treat people perceived as 'different' (e.g., Addie in A Kind of Spark (McNicholl, 2020) makes it her mission to achieve a memorial to the women killed in the Scottish Witch Trials merely for being different). Wider society and clinicians have much learning to do from thinking about the stories we tell our children, be that in fiction or the dominant narratives that prevail about how to be in the world.

Many young people come to us with a veritable library of negative stories that they have been told (either implicitly or explicitly) about their ways of being ('you're weird', 'you never listen', 'you can't do X', 'you need to be Y'), only to leave the assessment space being given yet another negatively framed story: they are someone who has autism, and the story told about what autism 'is' is often deficit-laden. Put simply, this can feel akin to being told we have something like head lice – the having implies a condition, disorder or something unpleasant that needs removing (head lice need removing, with careful scrutiny, combing, chemical shampoos…). This is the type of narrative that leads to 'intervention' based on neuro-normative goals and neurotypical developmental trajectories. This is the approach we seek to challenge in this book. Unlike head lice, autism does not require treatment or combing out – being Autistic runs through our neurology in the same way that words or streaks of colour run through sticks of sweet seaside rock (long coloured candy sticks typically with the name of the place 'written' inside). Any effort to pull the writing out of the rock is not going to end well for anyone concerned.

Neuro-normative refers to social, cultural and personal norms which assumed neurotypicality as the 'norm' in how to think, feel, behave and communicate (Herrán Salcedo, 2021).

For many Autistic children, young people and adults, the dominant, deficit laden rhetoric surrounding 'diagnosis' and deficit means that when they are identified as Autistic, they may be presented with stigmatised and negatively valanced accounts of what being Autistic is. Such damaging frameworks can create false perceptions of that person in both how they see themselves and how others perceive them (Hobson, 2011). The path to formal discovery of identification is typically based on struggling and distress. Our ways of being are seen as problematic and pathological, and we carry the burden of that. Deficit-based identification processes mean these narratives can be internalised and impact well-being (Farahar, 2023).

Assessed within a deficit-based frame, an 'autism diagnosis' can become a negative part of the child's story, both in the story that they create for themselves and how those around them re-story the young person as 'disordered'. As Bernadi (2023) observes, an autism 'diagnosis', and the negative narratives surrounding this, in effect creates a new and 'forged' identity. When it is delivered through a medical-based, deficit-laden approach, autism 'diagnosis' can be situated akin to chronic illness, instigating a drive for 'correctional' therapies (Bernadi, 2023). Parents/caregivers and those around the young person must navigate, and try to reconcile, the different narratives that they see surrounding each young person around Autistic experience; one that is deficit-laden against another that celebrates and welcomes Autistic ways of being and does not see this as problematic. For example, from her study involving teaching assistants, teachers, special educational needs coordinators, deputy head teachers, ten Autistic children, ten parents, and ten Autistic adults, Wood (2019b) reported that there was a disconnect between the deficit-based descriptions of autism that participants felt unable to question and the actual child they knew.

FFS – No, my son does not 'suffer' from autism. He is Autistic. I am literally seeing red…what a f***ing let down this letter is.
(Anonymous, personal communication, 2023)

Another telling of this story is that we are Autistic, being Autistic is part of our fundamental neurology and is part of the beautiful and vital diversity of life. As we will explore in Chapter 5, this is the story told by the Neurodiversity Paradigm which underpins how we approach collaborative discovery of Autistic identity with the young people with whom we have the privilege of working. Our collective shift to neurodiversity affirmative practice has reflected a move from a pathologising epistemological approach to an empowering one (Jackson-Perry et al., 2020, p. 133). As clinicians working within a neurodiversity affirmative frame in collaborative identification of Autistic identity, we exist as both part of the 'system', and yet push back against it. There are different ways to approach formal identification of Autistic experience that do not mean repeating a rhetoric of deficiency and deficit, whilst still adhering to the diagnostic criteria (see Hartman et al., 2023, for a detailed guide to conducting neuro-affirmative, respectful identification of Autistic identity in adults).

Writing this book has been a process of reflection on our personal and professional experiences, exploring our responses, even our rage (c.f., Bertilsdotter Rosqvist & Nygren, 2023), as we realised how epistemic violence has affected the knowledge base around Autistic experience and how this impacts on how the majority of assessments are conducted currently.

When families come to us for an identification piece, they offer us the most precious gift of sharing their family stories and the opportunity to work with their loved young people. By then many families will most likely have fought to be heard, to secure that appointment with us – and the way to do that typically focuses not on the wonders, the beauty, the sheer magic of this unique young person carving out their own way of being, but on focusing on stories of what they don't, can't, won't do (and this is usually from a neurotypical gaze on development, what is 'expected', what is the 'right way' to play, communicate, engage in relationships). It takes great courage to offer up one's precious young person for the most intense scrutiny. And so, we offer two personal stories: one about the identification process for our own young person, and one about being identified Autistic ourselves [Editor's note: Only the first is included here]. We do so in the spirit of honouring and respecting the gift of trust that families give us. We share our experience as a reflection of the rawness of the process, because this is what we seek to support you to move away from. The discovery of Autistic identity, how it is identified, framed and shared with the young person becomes a fundamental part of their life story. As clinicians, we typically have the power to be the narrator in that chapter of the child's story (in how we conduct the identification piece, frame Autistic experience and collaboratively discuss Autistic identity with the young person and their family). Our narrator role may be brief, but as we know from any book, each chapter leads on to the next, and the next and the next, and the threads we establish in our chapter will echo through all subsequent ones. We encourage you to be co-author with the young people and families – collaboration is vital, discovery should be a co-created positive experience which fosters self-understanding and community.

Professional: My Personal Experience

Dr Anna Day

Where do I start? Where? When? How far back do we need to go to make sense? I will circle, and for that I do not apologise. I don't think in a linear process, I bounce, endless tabs open, random pop-up ads seeking my attention. This made the identification process difficult. I think in tangents, I take side streets, I linger with intent, circling round my thoughts because that guides how I get to the end. The clinicians want straight answers, clear ticks to the boxes, but I don't communicate like that. And even though they know I am Autistic, I must mask, mask, mask and create a linear story that I don't even hold in my own mind, let alone have the ability to articulate. I'm filtering, sieving through what I need to tell them, trying to find how to articulate it in the way that they want me to, which doesn't fit with my way of communicating. So, I look anxious, because I know I need to 'perform' the expected way of narrating my child's story and experiences and so I must edit internally as I go. All the time I'm doing this, I can see my child through the one-way mirror sitting with the speech and language therapist. I can see her distress; I can read her through the mirror and yet I can't reach her. Nor can the therapist. Are they trying, I wonder? Are they trying to connect with her in how she relates to people or based on neurotypical conventions? I don't yet know the language of Milton's work on double empathy, but I feel it. I see the mismatch in action, I feel it viscerally. I can see her drawing our cat over and over and over because she, I, we, love cats, love drawing them, reading about them, worshipping them. I can read the therapist's face as she makes notes, frowning slightly. She doesn't join in the drawing. She misses a precious moment of connection – which is later documented as repetitive play and lack of interest in communication.

They said she'd be able to see me, but how can she when she is shutdown and can't raise her head. I want to put my hand against the mirror, or tap, do anything to connect – but that's against the rules. The rules said she had to go alone – and I think this makes no sense because she is surrounded by bright lights, with someone she's only just met, and pleaded desperately with her eyes not to have to go. And I feel I am letting her down because her eyes beg me to stay. But I mask and I play by the rules, and I talk and mask and edit myself to the paediatrician and wait for it to be over.

The usual assessment questions start with pregnancy. But that's not my start. What I don't say – because they didn't ask, and I don't know how to say it – is that these aren't the right questions to understand our story. They ask about any other children. And that's not the right question. Because the right story starts with a very brief chapter that didn't make it past Chapter 1: Pregnancy. And that is a fundamental part of my story, the endless hiding in sunglasses walking the streets in tears before the joy of my second child. I manage to tell them I lost my first child. They jot down 'miscarriage', only child. Our story is already being filtered.

We gloss over how long it took to get this appointment. The endless, relentless game of pass the parcel around all the different local services, bouncing to a soundtrack I have long since tired of. It screeches in my mind because everyone repeats the same: we are not the right service. We finally pass the door into one assessment – but after an observation in school the clinician declares my child can't be Autistic because she picked up a glove and gave it to the teacher therefore demonstrating she had 'Theory of Mind' because she must have been concerned for the child who lost it. In a long walk back from the city centre to home, I have a protracted conversation with the clinician on my mobile explaining my child likes putting things back where they belong, she is a secret worker at our local superstore, re-arranging shelves when items are out of place – she loves sorting and organising and this is nothing to do with being concerned about the glove's rightful owner – and info dump about the problematic nature of that construct anyway. But I am wrong, and she is right. My child is not Autistic, not remotely. Many years later, that therapist becomes involved again briefly, and apologises for letting my child down because of her own lack of knowledge about the diversity of Autistic experience. That lack of knowledge cost us years of missed support and understanding – and yet I embrace her apology because it means that she learnt, and reflected, and changed her practice.

We circle back to The Assessment. Eventually the speech therapist comes back with my child, and we must swap so she feeds back to me whilst my child is again sent with a stranger, the paediatrician, where she remains, untouchable, through that mirror. The therapist tells me my child 'wouldn't' engage and 'wouldn't talk' so she couldn't score the formal measures and so she can't declare if she is Autistic or not because the measure can't give the answer. Despite the paediatrician returning and declaring it is likely she is Autistic based on my reports (and it feels like passing an exam), they declare Someone Else needs to see my child at home where she may be more comfortable, and they need her to talk. And so, we wait a bit more. Finally, another speech therapist visits us at home. This time, she asks just a few questions of my child, ones that she can draw or write or go and get a toy or anything else that she wants to use to answer. And from this she recognises that there is no doubt my child is Autistic. We wait a few weeks for the formal letter. And when it comes, I dance because we share our neurology, I knew we always did but finally the 'system' recognises this.

But when I read the letter, it's about the wrong child.

This letter is about a child who is 'disordered', 'non-communicative', has 'complex speech and language difficulties', 'plays repetitively', 'perseverates just drawing cats', 'doesn't play imaginatively', 'is highly anxious', 'resists change'. She has a 'disorder'. They suggest genetic testing because 'something else may be wrong'. And so, it goes on. And on. Each line becoming more and more wrong.

Who is this child?

This is not my child.

My child is a ray of sunshine that bursts forth from clouds of grey. My child is the most perfect little human there has ever been, full of giggles, love, hugs, humour, who loves to read, to spin, to play together, who cares deeply about animals (particularly cats, of course), who is the best person to hang out with, who creates dark and funny stories.

Their version is not my child. Their 'post-diagnosis' course for parents/caregivers keeps trying to fracture my version of my child. They repeat stories of deficit, disorder and lack of interest in others. I think I annoy them. A lot. I debate their narratives of disorder, indulge my granularity and highlight the issues with the literature they present. It doesn't go down too well. I'm supposed to listen about the 'difficulties' my child has in communication – but they don't listen when I try and explain how Autistic people communicate. They tell a story that many parents/caregivers will have been presented with, about having expected a luxury holiday in one country only to have to settle for a 'meh' holiday elsewhere. They may not mean to, but somehow, I am being told to settle for a two-star holiday somewhere I didn't want to go to. And I want to shout at them that my child is my five-star luxury resort. She is exactly as she should be. She is herself. She is.

Many years later we have a medical appointment. My child is largely nonspeaking. She sits beside me, needing medical attention, and yet the doctor speaks about her, not to her as if she were not there. She may not speak back but there are many more ways of communicating than just words. Can the doctor hear her I wonder? I can hear her, and yet she does not speak. She can hear the doctor; she processes the impact of being spoken about as if she is not in the room. I am asked if an upcoming appointment is 'for the autism'. I want to cry at these words. I wish to launch upon a long monologue. But I restrain myself. At least as much as I can. This is the opposite of how we speak about our shared neurology at home: being Autistic is what we are, not something that needs treating. I tell the doctor this because to stay silent is not in my nature and my child knows this. I speak up, for my child, for all the future Autistic young people this doctor will see in the hope that some words may sink in. She stares at me. Am I being too articulate to be Autistic? Or am I so Autistic I cannot see that I must require treatment 'for the autism' also?

Some people fit in. When you or your child fit out, it is both glorious…and entrapping. Because too often services do not listen, and they do not provide the care that Autistic people need. Too many Autistic young people have been let down by services throughout their lives, battered from pillow to post in an endless bureaucratic dystopia because they do not fit the right box. Isn't it time that services start thinking outside the box? Shatter those boxes. Find queer spaces to do things differently. Autistic rights are human rights.

You can buy The Neurodiversity Affirmative Child Autism Assessment Handbook by Dr Maeve Kavanagh, Dr Anna Day, Davida Hartman, Tara O'Donnell-Killen and Jessica K Doyle at JKP here. Use the discount code BPSNECH for 20% off.

See also our Neurodivergence collection.