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Autism is fluid

Updated: Jul 9, 2023

Autism is not a disorder and does not need fixing or any 'interventions'. Autism comes under the umbrella of neurodivergence, it is a different way of thinking, interacting and responding to people and the world. Nick Walker (2021) in her book Neuroqueer Heresies, states; 'Autism is a genetically-based human neurological variant.....autistic individual's subjective experience can be more intense and chaotic than that of non-autistic individual: on both the sensorimotor and cognitive levels, the autistic mind tends to register more information and the impact of each bit of information tends to be both stronger and less predictable'. I believe most autistic needs are created by the environment, barriers in society and people's lack of understanding or misunderstanding. Autism is often described as being like a different 'operating system', a different way of thinking, interacting and sensory processing. It has long been established that autism is not linear, it does not move from low to high functioning, people cannot be described as having 'profound or low functioning autism' or 'high functioning autism'. I have described this in more detail in my article, 'Profound autism' does not exist'. Functioning labels such as low / high are often considered harmful by the neurodivergent community as it can be invalidating and does not take into account the diversity of strengths and needs. Everyone (regardless of any difference of neurology) has varying areas of strengths and weakness. Nick Walker (2021) clearly states, 'to describe autism as a disorder represents a value judgement rather than a scientific fact'. She expands on this further by clarifying 'if you ask me if autism is a disability, I'll say no, but if you ask me whether autistic people are disabled, I'll say yes'. To embrace the neurodiversity paradigm is not to say autistic people are not disabled. If you view autism through a pathological lens as a deficit 'condition' it will lead to disabling autistic people further. If you view autism through a neurodiversity affirming lens you will understand that inclusion is not about trying to make autistic people 'less autistic' and fit in, rather it is about everyone being more open, more compassionate, developing a greater understanding of need and working together for the benefit of everyone. In a school setting you could considering being neurodiversity affirming in the following ways: Sensory - If pupils find it overwhelming to eat in a large busy dining hall, ensure you have smaller quieter spaces. This does not have to be a fixed plan some days some may be able and want to eat in the dining hall, it is about providing flexibility. Communication - It may mean teachers have to differentiate even further, think about not just differentiating by task or outcomes but by resources and methods. Consider if typing / writing / speaking / AAC/ signing may be better to demonstrate knowledge during that lesson if some one is struggling. Social - You may need to consider some individuals may be more comfortable in smaller groups, different environments or only being with certain people they feel connections with that understand them. We need a flexible approach, through the day.

Autism is not inherently deficit, difficulties arise from the barriers in the environment and people's understanding. Luke Beardon (2019) writes about the benefits of the environment for autistic people and summarises this as follows in his golden equation:- Autism + Environment = Outcome Specific communication, physical, sensory or co-occurring learning disabilities can co-occur alongside autism. This is not invalidating the sometimes deeply profound and complex needs some autistic people experience and battle with daily. However, in the right environment, with people who have a deep level of understanding and connection with them then autistic people can thrive, they will not be defined by the deficit criteria that currently exists, including those with profound and multiple intellectual disabilities. By exploring and understanding the neurodiversity paradigm we can change this narrative and way of thinking, it enables people to see deficits under a new affirmative light, whilst still recognising the need for support and accommodations. Flipping the Narrative By flipping the narrative of our understanding of autism we can see previous deficits through a new lens, for example:- Meltdowns / Shutdowns = sensory, social, communication overload caused by unmet needs impacting upon a person in the environment without enough time to rest / regulate / recover. Stimming = joyful positive experience to support good mental health and sensory regulation

Restrictive & repetitive interests = opportunity to dive into monotropic flow states, freeing experience for the mind and body, allows deeper knowledge and gaining of skills Communication = studies have shown that autistic people often have a deeper connections and flow within conversations when communicating with other autistic people in their own preferred way. Understanding of the double empathy problem (Damian Milton, 2012) and more opportunity to communicate authentically will improve autistic / autistic and non-autistic /autistic communications.

The study by Alvares et. al. (2020) describes how being labelled 'low functioning' is stigmatising, people may be left isolated and their true strengths may go unrecognised. Equally, being called 'high functioning' (often due to not having a learning disability) can be invalidating for autistic people. It can be likened to the metaphor of a swan who seemingly glides gracefully and easily across a lake yet underneath the surface they are working really hard to keep going. Some autistic people who appear to be 'doing well' and may have a career, relationships, family are seen as 'high functioning' because they appear to be meeting the criteria of a 'successful' life, these labels can be invalidating. It can lead to high levels of masking to keep up this presentation and live up to expectations consciously, or unconsciously. This is reinforced from a very young age where authentic autistic needs may be dismissed. Adults often tell children to 'get on with it / not make a fuss / not cry', this reinforces masking behaviours and a need to ignore your own needs and fit in to expectations, which are often then rewarded. Functioning labels can be equally as invalidating for some non-speaking autistic people who do not have a learning disability, they may equally feel dismissed. Invalidation and masking can have a detrimental effect on mental health and can lead to autistic burnout.

Many people now understand autism as a being a difference of neurotype. The recent research from Axbey, H. et. al (2023) Innovation through neurodiversity: Diversity is beneficial states; 'Being neurodivergent means your neurology diverges from the majority of people around you. By the very nature of grouping people into majority and minority groups it means those in the minority often have to struggle more'. Being neurodivergent mean you have a different way of your bodymind thinking, responding and interacting with people and the world around you. Understanding everyone as an individual (regardless of neurology) highlights that everyone has different support needs in different areas that impact their lives in different ways. There are no low or high functioning aspects to autism itself, it is far more complex. This gives meaning to the 'spiky profile' many professionals write about in children's reports when discussing autism or teachers may describe in school reports. Nancy Doyle (2020) clarifies the meaning of a 'spiky profile' in her research by stating that;

'A definition has emerged for psychologists and educators which positions neurodiversity ‘within-individuals’ as opposed to ‘between-individuals’. To elucidate: the psychological definition refers to the diversity within an individual’s cognitive ability, wherein there are large, statistically-significant disparities between peaks and troughs of the profile (known as a ‘spiky profile’). A ‘neurotypical’ is thus someone whose cognitive scores fall within one or two standard deviations of each other, forming a relatively ‘flat’ profile, be those scores average, above or below. Neurotypical is numerically distinct from those whose abilities and skills cross two or more standard deviations within the normal distribution'. Autism is Fluid

Moving on from the static spiky profile of autism, I am exploring the idea of autism being fluid and discussing that there is no single definition or even a single static profile of an individual's autistic presentation. Autism is fluid because people are alive and constantly changing from moment to moment. Everyone's needs are affected by the environment and people around them, as humans we are constantly in a state of flux, change, movement.

Everyone’s social, communication, sensory and physical needs are different and are affected by how they respond and interact with the people and environment around them. This impacts how much capacity a person has for different tasks and demands. The infographic to the left shows an image from the work of Fergus Murray (2020) from Neurodiversity is for Everyone. This demonstrates that; 'given almost any trait, a minority of the population will diverge strongly from the average. There are many ways to diverge, so most people are atypical in some ways'. In summary, there is no single 'neurotypical' type we cannot define typicality or normalcy, it could be argued that what makes people 'typical', is the aspect of conforming to expectations. Conforming and finding ways to meet expectations is exhausting due to masking but also the effort of shifting attention tunnels of thought to function and complete tasks throughout the day. Monotropism

The theory of monotropism was developed by Dinah Murray, Mike Lesser and Wenn Lawson (2005) in their article Attention, monotropism and the diagnostic criteria for autism, published in Autism. There are many positive aspects to monotropism such as autistic people being able to hyperfocus on tasks that involve their special interest. This means given the right environment and interest autistic people are often able to engage for long periods of time, gain great knowledge and skills and also regulate their emotions and sensory needs by entering what is described as a monotropic 'flow state'.

Murray et al. summarise that the positive effect of monotropism on a 'person’s physical and psychological state gives a sense of achievement'. They argue that special interests may help to achieve a flow state, as defined by Csikszentmihalyi (1990), 'where a person is so immersed in an activity that nothing else seems to matter', however there are also difficulties. Due to the intensity and amount of total energy being channeled into a single hyper focus at the expense of anything and everything outside of that channel (including own internal body interoceptive needs), I feel this also means it takes more energy for autistic people to be able to move their attention from one task to another and change focus. Transitions and any change is more exhausting for autistic people as it diverges away from their monotropic way of thinking, it takes more energy. This is also discussed in more detail in my article 'Monotropism = Happy flow state' (April 2023).

To maintain good mental health we need to ensure social, sensory, physical and communication demands do not exceed a person's capacity to manage. Neurodivergent people often need more time to rest, recharge and re-nourish their body mind and sensory system than neurotypical people. This is because of the intensity of the challenges that they face and the higher barriers due to the neurotypical bias of society. Capacity Cup

If demands outweigh a person’s capacity they will reach overload (this could also look like shutdown) .

Autistic people may need more time and space for regulating and recharging due to the demands of living in a primarily neurotypical world. For people with different needs this means they may reach capacity quicker than those whose needs are not so different. Neurodivergent people have to use more energy to try and maintain a balance in their lives to get through the routine demands and tasks in the day. Everyone has their own capacity and limits and physical, sensory, communication and social demands will affect people in different ways, this will mean that their 'capacity cup' will fill up at different rates. If you are neurodivergent the demands may weigh heavier, take up more room in your cup as they are often demands from a neurotypical environment taking up your neurodivergent space and resources. To put this into a context if you an autistic child and find it more manageable to be in small groups, in a quiet, clutter free environment then if you are in a noisy busy reception classroom environment you are going to find this difficult. The sensory demands pouring into your capacity cup will quickly fill up with loud noise, lots of visual displays, possibly lots of smells due to snack time, paints and playdough and lots of distracting toys around you. The communication demands may drip in heavily whilst you try listen and focus on one teacher despite there being 30 other children talking noisily, being expected to answer questions in front of lots of people when this makes you anxious quickly fills the cup up. The social demands may also be dripping in quickly as you are expected to remember all the rules of play, sharing, turn taking sometimes 1:1 and suddenly being involved in unpredictable games with lots of other children. It is easy to see how different demands fill up people's capacity cups in different ways depending on the environment. This is also dependent upon their state of being in that moment, their own internal flow state, which is affected by everything that has happened prior to that moment and will affect everything that will happen in the future.

Spoon Theory

Without enough time to rest, regulate, recharge and nourish the sensory system it can quickly lead to higher levels of masking to try and cope. Alternatively without time to rest and recharge it could lead to overload (meltdown / shutdown) or potentially other physical health and mental health complications (anxiety, headaches, tummy aches). If this occurs repeatedly and over a long period it could result in autistic burnout and more serious mental health difficulties. The graphic to the left highlights this in relation to the 'Spoon theory' developed by Miserandino (2003). The Spoon Theory represents energy in spoons, people will use a different amount of spoons for various tasks depending on their needs. Neurodivergent people may use more spoons to complete some tasks than neurotypical people due to extra sensory, social and communication needs and processing. An example of this is for some neurodivergent people with sensory processing difficulties a daily routine such that a 'neurotypical' person may do without thinking about and only use one spoon for, may take 2 or 3 spoons of energy for a neurodivergent people due to how it affects their sensory system. To maintain good mental health it can help to visualise energy in this way so you gain a better understanding and way of managing and balancing out your spoons through the day. Neuroqueer Theory

Nick Walker (2021) moves beyond the essentialist identity concept of neurodivergence by exploring the concept of neuroqueering. This is discussed in her book NeuroHeresies . She states that; "Neuroqueer Theory centers the idea of creative exploration and cultivation of fluidity: fluidity of neurocognitive processes, fluidity of consciousness, fluidity of performance, fluidity of gender, fluidity of fluidity of the self, potential fluidity of culture". Walker proposes the idea that it is limiting to define people as either neurodivergent or neurotypical and that we need to expand these limiting concepts. She considers the idea that we can intentionally change who we are, we can actively change how we think and perceive and interact with the world, we can diverge our own neurology (whether you are born autistic or have any other diagnosed neurodivergence or are seen and identify as 'neurotypical'). If everyone looked deeper inside themselves and explored this potential for change we would have no 'typical'.

Creative Synergy and Magic Walker's inspiring presentation, 'Expanding the Creative Potentials of Human Neurodiversity' at ITAKOM (It Takes All Kinds of Minds Conference, March 2023) explored how we need to work together so the 'creative synergy, the chemistry that is between and among different minds' can emerge, 'so the magic happens'. We need all our different minds to work together, it really does 'take all kinds of minds' to reach potential. We need to develop a common language and be open to different ways of thinking, more accepting and inclusive. We can all benefit from inclusion, we would all benefit by embracing diversity as that enables a greater, richer potential for a better world for everyone. Walker summarises that 'diversity is crucial to move us towards a better future'.

We are some way from this future being a reality, however we can work towards this. We can change our concept of what a thriving autistic looks like, it may look very different to a thriving non-autistic person and that is ok, infact that needs to be celebrated. There is no one 'right way' to live, there is no one static definition of autism. Everyone is different and that is why we need to truly understand and celebrate neurodiversity for what it really means, focusing on the differences and strengths of everyone and all the wonderful infinite differences and possibilities there are.

Autism is fluid and everyone's needs are different. We need compassion and understanding to develop deep and meaningful connections. We need to embrace the fluidity of difference, so everyone feels understood and is able to thrive, 'so the magic happens'.

References Alvares, G. A., et al. (2020). The misnomer of ‘high functioning autism’: Intelligence is an imprecise predictor of functional abilities at diagnosis. Autism, 24(1), 221–232. Axbey, H., et. al. (2023). Innovation through neurodiversity: Diversity is beneficial. Autism, 0(0). Csikszentmihalyi, M. (1990). Flow: The Psychology of Optimal Experience. Harper

Doyle, N. (2020). Neurodiversity at work: a biopsychosocial model and the impact on working adults, British Medical Bulletin, Volume 135, Issue 1, Pages 108–125. McDonnell, A., & Milton, D. (2014). Going with the flow: reconsidering ‘repetitive behaviour’ through the concept of ‘flow states’.

Milton, D. E. (2012). On the ontological status of autism: the ‘double empathy problem’. Disability & Society, 27 (6), 883–887. Miserandino, C. (2003). But You Don't Look Sick? support for those with invisible illness or chronic illness - The Spoon Theory.

Murray, D., Lesser, M., & Lawson, W. (2005). Attention, monotropism and the diagnostic criteria for autism. Autism, 9 (2), 139–156. Murray, F (2019). Neurodiversity is for Everyone, cited in Murray, D. et al. (2020) The Neurodiversity Reader, Pavilion Publishing, Chapter 10.

Walker, N. (2023). Expanding the Creative Potentials of Human Neurodiversity, presented at ITAKOM (It Takes All Kinds of Minds Conference March 2023).

Walker, N. (2021). Neuroqueer Heresies: Notes on the Neurodiversity Paradigm, Autistic Empowerment, and Postnormal Possibilities, Autonomous Press. **Article written from my lived experience as a parent and teacher. Knowledge gained through various personal research and neurodivergent communities. Autistic Realms is a space for parent support and teacher guidance. I am not a medical professional or therapist**


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