Notes - Strategies to Support Neurodivergence...
Social Stories I remember the first time someone mentioned the phrase “social stories” to me. I remember thinking, ‘Well, I know what stories are…but what on earth are social stories?’ In their simplest form, social stories are descriptions of an event that lets an individual know what to expect. This might be using text, or with a mix of text and pictures. The story can be as simple or as detailed as the individual needs. For one of my children, I used a lot of information, even when they were quite young. He tended to get anxious if he did not know every possible detail of what was coming up, and the level of detail I provided him helped scaffold that anxiety. For another of my children, keeping it short and simple is best. He’ll process it in his own time, and let me know of any questions he has at a later point in time (probably while I’m trying to merge in traffic at 100 km an hour!) Whether or not pictures, photos, or visuals are included depends on the individual as well. For one of my children, I used to use photos when they were small, then visuals. Now, I write out the social story and leave space for him to draw his own pictures. Drawing his own pictures also helps him visualise and process the content of the social story, which is the whole aim of this strategy anyway! Social stories can reduce anxiety by letting the individual know what is likely to happen. It is also much more ‘concrete’ than spoken words. If someone tells me what to expect, the words may disappear into the air once they’re uttered – especially if I’m already overstimulated and finding it hard to retain information. If it’s written down, I can refer back to it whenever I need to. It also provides me a bit of a ‘script’ to use as self-talk when the anxiety might come back – “This is new, but it’s okay. After this bit comes this.” Social stories can be used in ways that aren’t suitable for neurodivergent people. For example, a social story telling a child to sit quietly at assembly, look at presenters in the eye, not fiddle or stim, and not show any visual signs of distress (like putting hands over ears when people clap) isn’t appreciating the needs of the child. It’s forcing expectations upon them that don’t take into account the unique way their brain is wired, and teaching them that they need to ‘mask’ (pretend to be neurotypical, like everyone else) in order to be accepted and validated. This sets the individual up for all sorts of unhelpful thinking patterns and mental health conditions, which is the last thing anybody needs! Instead, a social story might explain that people are quiet at assembly so they can hear the presenters, but the child can quietly ask the teacher a question or make a hand signal if they need help. It is helpful to look towards the front so the child can see what is going on, but they don’t need to look at people’s eyes if this makes them uncomfortable. Some examples of suitable fiddle toys for assembly might be provided for the child to choose from, and an exit strategy (like being able to do a job for the teacher, sit at the back of the assembly if it’s quieter and less crowded there, or go for a walk with an EA) might also be mentioned if the child feels they need a break. In this second example, the expectations of the majority are considered alongside the child’s own unique needs and preferences. This would be a much more suitable type of social story for a neurodivergent individual. Social stories are aimed to empower neurodivergent individuals with information, strategies and choice, and reduce anxiety at the sense of the unknown. A good one will do this well, at a level that works well for the individual child.
Fluctuating Capacity “Fluctuating capacity.” So clinical, sterile, it almost comes with a whiff of whatever bleach-based agents they use to scrub down hospital surfaces. Diagnostical, maybe a disordered body part that somehow flutters and fades, like a butterfly, into the ether. Are there even words to encompass it? A rollercoaster cycle, with its peaks and pitfalls – one day, I can do all the things. The next day, inexplicably, I find myself bed-bound, racked with exhaustion, my temples throbbing from the full force of a migraine. A predicament that, ironically, is unpredictable. And for our kids? One day, they might demonstrate an ability to add, multiply, write that essay. The very next, picking up their pencil seems impossible – the lights too bright, the chatter overwhelming, letters and numbers blurring in their teary vision. “You did it yesterday!” their adults exclaim. “What’s changed?” “You’re choosing not to.” Words, accusatory and accosting, flickering into their consciousness, shaping their thoughts. Maybe I’m just lazy. I did it yesterday – what’s wrong with me? Nobody else seems like this. Add in a side dose of perfectionism, a splash of anxiety, and the issue of ‘fluctuating capacity’ is compounded. And for our neurodivergent kids, who already feel different? For our twice-exceptional kids, who are – by definition – exceptional due to their giftedness and due to their diagnosed neurodiversity? It’s like pouring petrol on the existing flame of not-enough-ness that comes with fluctuating capacity. I just did it yesterday – what’s wrong with me? I’m obviously not trying hard enough. I can force it, maybe – then I won’t be different. Then they’ll like me, accept me, and it will all be okay. Masking, internalising of their anxiety, perceiving that their worth is entirely based upon performance and product… We are not machines, able to perform at the same level, day in, day out. Nor are our children. But we live in a system that expects sameness and predictability of us, and when we fall short, it labels us. Sometimes, we even label ourselves. Can we create space for the days and seasons where our capacity flutters and fades? For ourselves, and for our little ones? Perhaps not, “can we?”, but “how do we?”
To ‘Label’ Or Not To ‘Label’? I’ve been hearing concerns about labelling children, especially younger ones, with a diagnosis that will stick with them for life. Sometimes, these concerns come from parents themselves; more often, parents are reporting that this is the advice they are getting from their family of origin, commonly the child’s grandparents or extended family members. Once, the fear of being seen as different was very real. Decades ago, a diagnosis came laden with societal stereotypes and judgements – much more so than we see today. Receiving a ‘label’ could come with connotations of poor parenting or somehow the child being ‘not quite right’. Autism came with the baggage of a deeply embedded ‘refrigerator mother’ trope, where children were assumed to have developmental challenges because their mother/main caregiver was frigid, unresponsive to their cues and needs (Cleary et. al., 2023, p. 65). In short, a diagnosis wasn’t just about naming the child’s challenges and receiving the appropriate support; it was often seen as a reflection of the parents themselves. A diagnosis associated with disability can be fraught with conflicting emotions, often reflecting our social understandings of what ‘disability’ constitutes. ‘Dis’, defined according to the Merriam-Webster dictionary, means “the opposite or absence of”. Disability, then, may be interpreted as the ‘opposite’ or ‘absence’ of ability. As Ronskley-Pavia et. al. (2015) observe, disability is associated with “negative attributes within Western culture” (p. 7). The connotations implied may include an individual who is not capable, not able, and possibly even not worthy. The overt emphasis on “a remediation or deficit model” within the education system (Klinger, 2000, p. 277) may also be a reflection of the social views around disability. The focus is on ‘fixing’ or minimising the areas of weakness, in order to render the individual as ‘normal’ as possible. Unfortunately, as Ronskley-Pavia and colleagues (2015) indicate, the very term ‘normal’ “relates to the stigmatising of individuals who are perceived as being outside societal norms” (p. 9). Well-meaning family members may well defy the concept of ‘labelling’ a child with a diagnosis, in an attempt to protect their loved one from the inherent elements of stigma and un-belonging traditionally associated with concepts of disability. The world, however, has changed and continues to change. After all, “the past is a foreign country; they do things differently there (Hartley, 1953). This is largely due to the rise of the neurodiversity movement, where differences in brain wiring inherent in conditions like autism and ADHD are seen as “encompassing…human biological differences in cognition, brains and genes” (Kapp, 2020, p. viii). We see this reflected in terminology; autistic people, for example, are more often viewed as neurodivergent or neurodiverse, rather than as ‘disabled’. This marks a social shift towards greater acceptance and inclusion of, well, neurodivergent people. Perhaps a more helpful way of viewing the ‘labelling’ that may come with diagnosis is that of exceptionality. The child (or adult) is not typical of the broader population, and some elements of their exceptionality may require additional support. However, that exceptionality is not a negatively charged term; instead, it is merely one facet of their unique makeup. In today’s world, the diagnosis is often the key to obtaining the additional support needed to function in a world that is founded on assumptions of neurotypicality. In our state, for example, an autism diagnosis may allow access to the National Disability Insurance Scheme (NDIS), which covers the costs associated with therapies such as occupational therapy, physiotherapy, psychology, and speech pathology. Autism is one of the funded supports in our public education system, meaning that the child’s school receives funding that may be used for an Education Assistant, staff professional development, and/or resourcing (albeit at the school’s discretion). Such a diagnosis also allows access to government funding through Centrelink, such as the Carer’s Allowance and Carer’s Payment – both of which are invaluable when a parent’s ability to earn an income is impacted by their child’s additional support needs. This also allows other members of the family the ability to obtain additional mental health support and practical assistance through other organizations. So – to label, or not to label? While the concerns around social stigma still have some validity, the world is a very different place to what it once was. When the ‘label’ is the very key to accessing the funding, supports, and resources to assist with scaffolding an individual’s exceptional needs, I would argue that the denial of these services due to concern around societal views is equivalent to kicking oneself in the guts. Diagnosis, while a challenging process at times, does not need to be feared. It may well be the very thing that helps you and your loved one, understand their exceptionality – and therefore, to understand themselves. References Cleary, M., West, S., and Mclean, L. (2023). “From ‘Refrigerator Mothers’ to Empowered Advocates: The Evolution of the Autism Parent. Issues in Mental Health Nursing, 44 (1), 64 – 70. “Dis.” Merriam-Webster.com Dictionary, Merriam-Webster, https://www.merriam-webster.com/dictionary/dis. Accessed 23 Mar. 2024. Hartley, L. P. (1953). The Go-Between. H. Hamilton: London. Kapp, S. K. (Ed.). (2020). Autistic Community and the Neurodiversity Movement Stories From the Frontline. Palgrave Macmillan. Klinger, R. (2022). “Twice-Exceptional Children and Their Challenges in Dealing with Normality.” Education Sciences 12. https://doi.org/10.3390/edusci12040268. Ronksley-Pavia, M. (2015). “A Model of Twice-Exceptionality: Explaining and Defining the Apparent Paradoxical Combination of Disability and Giftedness in Childhood.” Journal for the Education of the Gifted, 38(3), 318-340. https://doi.org/10.1177/0162353215592499.
