A manifesto for allies adopting an acceptance approach to Autism
- February 15, 2019
Written by Dr Melanie Heyworth
Over the past few years, four of the five members of my immediate family have been identified as Autistic: myself and my three sons. It has been a turbulent time to say the least, but now – as a family which embraces respectful parenting by accepting our various neurodivergences – we live a very gratifying, pleasing and generally content life. This journey has fostered a profound passion in me for helping others to see my Autistic community as beautiful, not broken, as different, not less. I want every Autistic individual to be seen for their passions, strengths and talents, and not defined by their deficits; I want to explode the stigmatising stereotypes that are used to justify discrimination against the Autistic community, that confine us to Other and ‘less than’.
There may be some of you who will read this post and feel that I am not like the Autistic individual you know, or with whom you live or work, that my Autism is less severe, less challenging, less disabling. I hope that the words that follow will give you a different understanding of Autism, and a different language with which to speak about it. No matter how you perceive it, Autism is ultimately a neurology, and research is beginning to reveal that Autistic brains differ in their structure, functioning, and neural circuitry to non-autistic brains. So, although you may not be able to recognise immediate correlations between my neurology and another Autistic individual’s, those parallels undoubtedly exist. I share a basic lived experience with my Autistic peers that stems from a shared neurology, although I make no claims to speak for any individual’s experience except for my own. All Autistic individuals, then, are bound by a common neurology, even though the ways in which that neurology manifests to you may look significantly different. We are, after all, people, with all the diversity and individuality one would expect in any group of humans.“Autistic individuals are bound by the right to human dignity, to autonomy, and to the need to experience compassionate love and genuine welcome.”
Autistic individuals are also bound by the right to human dignity, to autonomy, and to the need to experience compassionate love and genuine welcome. It is a stereotype that Autistic individuals lack empathy and social drive (a stereotype that has been thoroughly discredited): in fact, Autistics have the same innate need for connection, love, and welcome as any other human. We are deeply hurt and profoundly damaged when these basic rights are denied to us. We are worthy of love. We belong in this world as we are. We deserve respect and dignity. We require the same presumption of competence, the same acknowledgement of our capabilities, as every non-autistic individual. We have the right to live a life of meaning and purpose. Regardless of how you experience someone’s Autism, these are every Autistic individual’s inalienable rights.
If you are reading this manifesto, you are likely in the privileged position of being able to be an ally, and to help the Autistic people with whom you live or work or interact to realise their rights and feel loved and welcomed in the world, as they are, not as you (or anyone else) would like them to be. You have the chance to shape the narrative of Autism to one that unites us as a community defined by mutual respect and appreciation. I invite you to see Autism from an Autistic viewpoint, and to join our Autistic community on our journey to acceptance.
A Note on Language
You will notice that I refer to myself and to my community as ‘Autistic’, not as ‘with Autism’. I know that this preference of nomenclature is at odds with the professional and academic communities, and very often with non-autistic parents, all of whom opt for person-first language (‘person with autism’) over identity-first language (‘Autistic person’).
Ultimately, each Autistic individual has the right to choose their identification for themselves, although very many of us opt for identity-first language (in informal Facebook polls, for example, usually around 80-90% of Autistic adults chose to identify as ‘Autistic’). My choice to use ‘Autistic’ vocabulary here is intentional and significant. For me, using identity-first language doesn’t mean that I think of myself (or, indeed, the people who make up my Autistic community) as any less of a person, or that I define myself in totality by my Autism or my disability. I think it is patently obvious that every Autistic person is indeed a person, and should be treated as a person; putting the person first does not make me more of a person. And it is important to remember, of course, that Autism is part of the spectrum of humanity, so putting it first (‘Autistic person’) does not reduce or remove emphasis from the humanity or the personness of an individual.
“It is patently obvious that every Autistic person is indeed a person, and should be treated as a person; putting the person first does not make me more of a person.”
Instead, for me, calling myself Autistic acknowledges how integral Autism is to my sense of self. It recognises that my Autism is not a secondary or lesser part of myself, not something to be confined or relegated to a trifling addendum. It signals that my Autism is fundamental to my identity and that I embrace that Autistic part of myself, as something of which I can be proud. Describing myself as a ‘mother’ and not as ‘a person with motherness’ or even ‘a person with children’, indicates how crucial motherhood is to my identity. Yet, simultaneously, I assume that, when I characterise myself as ‘mother’, you will understand that I am more than simply a mother, that I am not confined by that category however defining it may be. Similarly, I am defined rather than confined by my Autism. Autistic individuals speak eloquently on how their Autistic neurology pervades their every experience of the world because, as a neurology, Autism is an all-encompassing prism through which we process every experience, every interaction. The word ‘Autistic’ recognises the centrality of that processing prism.
The dilemma with using person-first language is that it intimates that a person can be separated from their Autism, that the person and their Autism are discrete and unrelated entities. Not only is this proposition untrue, it leads to distressing tropes such as the ransom notes campaign (in which Autism is the kidnapper which has ‘stolen’ an otherwise whole and wonderful person). Indeed, person-first language devalues Autism by constructing a false parallel between Autism, and illness and deficit (just think of why we say ‘person with cancer’ instead of ‘cancerous person’). Or, to think about it in another way, if you feel comfortable in referring to the ‘typically developing child’ (and don’t insist on saying ‘child with typical development’), then you should feel comfortable in referring to the ‘Autistic’ child: it is only preexisting stigmas around Autism that means that ‘Autistic’ can’t be as value-neutral as ‘typically developing’, used as an informative, factual descriptor.
Many people – professionals and parents alike – claim that they adopt a strengths-based approach to Autism. A genuine strengths-based approach needs to be comprehensive and ubiquitous, not simply a veneer applied to a preexisting deficits attitude. Using identity-first language affirms and validates Autistic identity; it shows an appreciation that Autistic individuals live their lives fully as Autistic, not despite their Autism. It reflects a strengths-based outlook. Ultimately, you can’t separate Autism from personhood, much in the same way you can’t (and shouldn’t) separate race, religion, or cultural heritage from identity and personhood. Think about it this way: Autistic individuals don’t ‘catch’ or ‘get’ Autism, and we can’t ‘cure’ or ‘lose’ it: that means we don’t have Autism, we are Autism… We are Autistic.
“A genuine strengths-based approach needs to be comprehensive and ubiquitous, not simply a veneer applied to a preexisting deficits attitude. ”
You’ll also notice that I capitalise the words Autism and Autistic. Why? By choosing to capitalise Autism and Autistic, I am taking an ideological stance, making a political point. Capitalisation acknowledges two key points about Autistic identity: not only does ‘Autistic’ indicate how innate our Autism is to our identity, it also acknowledges ‘Autism’ as a cultural or community identity (akin to the Deaf community, which is capitalised to prioritise a cultural connection beyond the word ‘deaf’, which describes hard of hearing individuals). As with person-first or identity-first language, it is ultimately each Autistic individual’s right to decide whether or not to capitalise the ‘A’ of Autism.
So: What is Autism?
If you read the diagnostic manuals, ‘Autism Spectrum Disorder’ is a set of deficits, behaviours and ways of processing that deviate from the norm and are pathologised as ‘disordered’ because of it. In the Diagnostic and Statistical Manual of Mental Disorders, fifth edition (or DSM-5), these deficits are grouped into a dyad of impairments (social communication, and restricted and repetitive patterns of behaviour, interests and activities), but I’d like to present you with an Autistic perspective of Autism that departs from this impairment-based construction.
“Autism manifests as developmental differences, so that Autistic individuals think, move, interact, sense and process atypically or differently to a standardised norm.”
To me, Autism is a complex neurological developmental variant, which begins in utero and is lifelong. What that means is that Autism is a difference in the nervous system (primarily affecting the brain and nerves) that is intrinsic to an individual. Autism manifests as developmental differences, so that Autistic individuals think, move, interact, sense and process atypically or differently to a standardised norm. These neurocognitive differences mean that we’re not ‘all’ a ‘little bit Autistic’, although, undoubtedly, we’re all human: you either are Autistic or you aren’t. They also mean that Autistic individuals have certain characteristic qualities, including differences in the way we:
- communicate, with many of us classed as non-traditional communicators,
- experience and display emotions,
- interact with others,
- form and define friendships and relationships,
- engage in areas of passion or expertise,
- innovate, imagine, and play,
- see patterns and connections, and
- perceive or sense the world around us.
Autistic individuals, however, are just that: individuals. We are unique humans, no two of us the same. And so these differences present differently, with different emphases and configurations of presentation. Our differences may wax and wane over time, and each Autistic profile matures and develops as an integral part of a maturing and developing person.
Since Autism is a fundamental way of processing, and not a disease or illness, it is not curable or treatable. Many of the challenges associated with Autistic differences result from a misalignment with a world that misunderstands or disregards Autistic neurocognitive needs.
“Since Autism is a fundamental way of processing, and not a disease or illness, it is not curable or treatable.”
This Autistic understanding of Autism replaces the concept of ‘disorder’ with ‘difference’. This replacement is not mere semantics: it is the cornerstone of adopting an acceptance approach to Autism. Whether you perceive Autism as a diagnosable disorder or, as I hold, an identifiable difference in neurocognitive processing, is ideological and value-laden, a subjective judgement rather than an incontestable fact. For the Autistic community, however, being able to see an essential part of ourselves (our Autism) as simply different and not inherently disordered, deviant, defective, is a first vital step to self-acceptance and self-advocacy.
Thinking about Autism
I ask you to consider the value of thinking differently. Thinking differently is a multifaceted concept which both requires us to value Autistic ways of thinking differently, and challenges us to think about Autism differently. One crucial way in which we, as a community, can think differently about Autism to effect positive change for the Autistic community, is to embrace the neurodiversity paradigm.
Neurodiversity (a word coined by the Australian, Judy Singer, in the late 1990s) simply refers to a diversity of human brains and minds. It is a biological fact that each person’s brain is different: if we accept that each human is a unique individual, then we accept the premise of neurodiversity (or brain diversity). And, ultimately, we do accept the reality of neurodiversity in so many of aspects of our lives. How else do we explain why some people are artists, while others are accountants, why some are musicians, while others are managers, why some love heavy metal, while others love Mozart, why some are extroverted, while others are introverted? Neurodiversity itself is not an ideology or an approach: it is an undeniable aspect of the rich tapestry of biodiversity which typifies the human species.
The neurodiversity paradigm takes this concept of neurodiversity and proposes that some brains are neurotypical (that is, broadly conforming to a standardised, typically developing norm), and some brains are neurodivergent (that is, diverging from that standardised, typically developing norm). Autism is not the same as neurodivergent (they are not equivalent), but Autistic brains are neurodivergent, since they do not develop along the expected trajectory. But there are many other expressions of neurodivergences (some organic to the individual, and others acquired by specific circumstances), including learning differences, giftedness, ADHD, OCD, epilepsy, acquired brain injuries, and PTSD.
The neurodiversity paradigm, however, also proposes that divergent brains – and, by natural extension, Autistic brains – are not ‘disordered’ because of that neurodivergence. It proposes that typical brains are no more ‘right’ or ‘healthy’ than divergent brains. In other words, the neurodiversity paradigm values neurodivergences as natural, worthy and beneficial manifestations of human diversity.
“The neurodiversity paradigm doesn’t reject the narratives of how problematic and complicated it can be to live as a neurodivergent person.”
The neurodiversity paradigm does not seek to gloss over the challenges of being neurodivergent in a predominantly neurotypical world, fashioned to meet neurotypical needs, although it does acknowledge that many such challenges would be lessened if appropriate accommodations were put in place through implementing the principles of universal design, for example. The neurodiversity paradigm doesn’t reject the narratives of how problematic and complicated it can be to live as a neurodivergent person. It does, however, ask that neurodivergences be de-medicalised and de-pathologised; it advocates for abandoning models that construct neurodivergence as ‘less than’, ‘defective’, ‘broken’.
For Autism, which is one specific neurodivergence, the neurodiversity paradigm asks that we divorce the neurology, Autism, from the ideological construct of ‘disorder’. A useful analogy is giftedness, which is also a specific neurodivergence. We do not ‘diagnose’ a child with giftedness. They do not ‘suffer’ from the ‘disorder’ of giftedness. There is no ‘cure’ for giftedness, no ‘treatment’ to lessen its impact on the way that a gifted neurodivergent person experiences and perceives and processes the world. And, indeed, we would not expect there to be, because, as a society, we generally value giftedness. And yet, gifted individuals often testify to the challenges and negative experiences arising from their giftedness: giftedness is not without its own struggles. But if we can value the potential of giftedness alongside its concurrent challenges, if we can respect and accept the worth and value of giftedness as a marker of human diversity, then it is not so great a leap to extend the same respect to Autism. The neurodiversity paradigm offers the Autistic community a framework by which we can celebrate who we are, how we exist, and what we have to offer.
“The neurodiversity paradigm offers the Autistic community a framework by which we can celebrate who we are, how we exist, and what we have to offer.”
The neurodiversity paradigm allows the Autistic community to describe all of ourselves, including our Autism, without pathology, which is especially important since so many Autistics are ‘multiply neurodivergent’ (that is, our brains diverge from the ‘norm’ in multiple ways. Or, in medicalised language, we have cooccurring comorbidities like ADHD, giftedness, epilepsy, and psychiatric conditions). Neurodiversity means that we can encompass our whole authentic selves without listing each and every ‘disorder’ or ‘diagnosis’. We can be, genuinely and entirely, just ourselves, with worth and value because of our differences, not despite them.
Communicating about Autism and with Autistics
It may be obvious to you by now that when we speak about Autism, language matters. Words matter. Autism is not a ‘deficit’. Or a ‘defect’. Or a ‘disorder’. Or an ‘illness’. It does not have ‘symptomology’ or ‘severity’. You cannot ‘cure’ or ‘treat’ Autism. Autistic individuals do not ‘suffer’ from their Autism.
And there is no such thing as a ‘high-functioning’ or a ‘low-functioning’ Autistic.
For the most part, these kinds of functioning labels are applied to Autistic individuals by non-autistic people to categorise us, and accordingly, these labels indicate more about how non-autistics experience a person’s Autism, than how the person experiences their own Autism. But they are incredibly damaging: compartmentalising someone as a ‘high-functioning’ Autistic diminishes the effort they expend to ensure that you experience their Autism more comfortably (for you, that is, not for that individual) and is used to deny support and accommodations. Consigning an individual to ‘low-functioning’ diminishes their humanity, their dignity, their strengths, and ultimately gives tacit approval for those around them to succumb to the soft bigotry of low expectations. So, when we speak about Autism, we need to weigh carefully the sociopolitical significance of our words: eschewing functioning labels is a vital way to show an allegiance both to the neurodiversity paradigm, and to the Autistic community.
“When we speak about Autism, we need to weigh carefully the sociopolitical significance of our words.”
Losing functioning labels from our vocabulary requires us to reimagine the Autism spectrum. For many, the Autism spectrum is linear, with Autistic individuals positioned on that line dependent on the ‘severity’ of their Autism. But the Autism spectrum is much more intricate and complicated than that: imagine three-dimensions, depth, tone, colour, shade and you’re far closer to the lived reality of the spectrum than a 2D line. I like to think of Autism as a prism, the prism of neurocognition if you like. The way each of us relates to our internal and external world is filtered through a processing prism. For some, that prism is a neurotypical prism; for others, their Autistic processing prism is structurally different. The processing prism itself doesn’t change, but the way in which input is filtered through that prism can and does change, which means that functioning is not static.
Think about yourself for a moment. Does your ability to function remain stable whether you’ve had two hours of sleep, or twelve? Whether you drank that double-shot espresso before work, or not? Whether you’re healthy or ill? Of course not. Our ability to tolerate loud noises, for example, might differ significantly if we are playing boisterously with our children to when we are concentrating on preparing a report for work. The same argument holds true for every Autistic person. Any person’s functioning depends entirely on the context in which they find themselves, and confining any person to a static functioning label is unfairly reductive.
But the idea of judging ‘functioning’ itself requires examination, because by whose criteria do you judge another person’s level of ‘functioning’? Does verbal communication dictate functioning? Independence? Cognition? Social awareness? Is the child who communicates traditionally (verbally) and is gifted but who can’t enter a classroom because of debilitating and crippling sensory and social anxiety any more or less ‘functioning’ than a child who is a non-traditional communicator but who embraces social interaction with vigour and enthusiasm? The concept of ‘functioning’ contributes to the pathology of Autism by reducing a person to a single, static level regardless of context, and by privileging neuro-normative (that is, neurotypical) demonstrations of ‘functioning’.
Equally important to consider, however, is the way in which we communicate with Autistic individuals. There is often an expectation that Autistic individuals should learn how to communicate with non-autistic individuals. But communication is, by its very nature, reciprocal. That reciprocity implies that non-autistic individuals have as much responsibility to learn how to communicate with Autistic individuals, as vice versa.
“Communication is, by its very nature, reciprocal. That reciprocity implies that non-autistic individuals have as much responsibility to learn how to communicate with Autistic individuals, as vice versa.”
Many Autistic individuals experience receptive and/or expressive language differences. These differences may mean that the way an Autistic person processes your communication with them, and the way they communicate with you, may be unusual (for you) or unexpected. One of the best ways to accommodate such communication differences is to be patient: give your Autistic communication partner the time and space to process your words and prepare their response (whether verbal or otherwise). In general, saying exactly what you mean (rather than using euphemism, idiom or metaphor) fosters quality reciprocal communication. For example, if you ask an Autistic child ‘can you please come to the table for dinner?’, they are not being defiant by answering ‘no’: they may simply not have understood the nuance that you have framed an implicit instruction within a question.
It is an erroneous stereotype that Autistic individuals don’t communicate using body language: most of us do use body language, it is just different to non-autistic body language. Just as Autistic individuals are expected to learn non-autistic body language and non-verbal communication cues, it will benefit your communication with your Autistic communication partner if you learn Autistic body language and non-verbal communication cues. For example, eye contact is often not a good indicator that an Autistic individual is listening attentively to you, although fidgeting often is.
Language matters. Words matter. Nuance matters. Adopting an acceptance approach to Autism requires an understanding of what words truly mean, what their ideological importance is, and how they contribute to a broader community dialogue about Autism. But communicating is not only about speaking (or expressing): it is also about listening (or receiving). It behoves the non-Autistic community, then, to listen to the Autistic community. Listening to Autistic adult voices, whether those voices communicate traditionally or not, is key to accessing the internal world of the people with whom you interact. Listening to the experiences of Autistic individuals – to their fears, their despair, their hopes, their humour, their needs – gives us access to the authenticity and depth of Autistic personhood and identity, it gifts an empathy for the complexity and beauty that Autism holds.
Every Autistic individual has the same human rights as every other human. Autistics have the right to be free from discrimination and to be considered equal; we have the right to life, the right to privacy, the right to safety, and the right to have the freedom of family and marriage. We have the right to freedom of thought and expression (which includes expressing one’s thoughts non-traditionally), the right to democracy, the right to work, the right to play, and the right to education, just as the United Nations outlines in the Universal Declaration of Human Rights. Many of these rights are not (or not automatically) extended to Autistic adults and children. They should be. It is not difficult to understand things like forced sterilisation as a violation of the Autistic right to family, but I encourage you to start thinking of examples such as intensive therapies or making private moments (such as meltdowns) public without informed consent also as violations of our human rights (of the right to play, and the right to privacy respectively).
In addition, all Autistics have the right to expect intactness and autonomy. Let me explain.
“‘Intactness’ is the theory that all facets of a person’s identity, of their personhood or self, are valued as essential, integral and positive parts of the complete individual.”
‘Intactness’ is the theory that all facets of a person’s identity, of their personhood or self, are valued as essential, integral and positive parts of the complete individual. Effectively, all aspects of a person – including their disability – are accepted and respected as fundamental to the very essence of that person’s individuality, as well as to their worth. This concept of ‘intactness’ is an important one since all Autistic individuals should expect to feel welcome, lovable, and likable as themselves, authentic, complete and unchanged: intact.
The freedom to experience ‘intactness’ of self is crucial for the development of self-determination, self-esteem and resilience, and positive self-regard. In practice, ‘intactness’ means that Autistic individuals have a right to identity and to integrity of self, the right to be understood as different and not less, and the right to have their different way of communicating, socialising and playing valued. This concept does not discount the benefits of teaching Autistic individuals some of the ways in which they can negotiate mutually comfortable interaction with their non-autistic peers, but it dictates a requirement for a reciprocity of acceptance and respect; it dictates that Autistic individuals have the innate freedom to authentic self-expression.
Key to this idea of ‘intactness’, then, is authenticity. So often, Autistic individuals are perceived by non-autistic observers to have ‘improved’ when they are able to perform non-autistically. This ‘masking’ (or performing as if our processing prism is neurotypical and not Autistic) is not, in fact, an improvement of Autism, but rather an improvement in how well an individual pretends to be not Autistic. Such pretense undermines a sense of self and the experience of ‘intactness’ because inclusion is then grounded in the assumption that striving towards being non-autistic is valued, yet one’s authentic, intact self is not worthy of welcome. Ensuring that an Autistic individual’s natural, organic – authentically Autistic – way of being in the world is valued and valuable is key to the empowerment and mental health of the Autistic individuals.
Autistic individuals also have the right to expect autonomy, or self-determination and freedom from external coercion or control. This expectation has many implications. Valuing compliance and conformity in Autistic children does not, for example, build their expectation for bodily autonomy, which in turn weakens their self-advocacy skills. Using control and extrinsic motivation to compel obedience fosters dependence and is not an appropriate social model to demonstrate for any child, including an Autistic one. On the other hand, respecting Autistic autonomy is shown to increase intrinsic motivation: when we value the natural and unique developmental trajectory of each Autistic individual, when we offer genuine choice and responsibilities, when we presume competence and practice empathy, we create environments in which Autistic individuals experience independence, risk-taking, and self-determination – the ability to drive and influence our own lives.
“An expectation of Autistic autonomy requires that non-autistic expectations for Autistic individuals are, by definition, less important than an Autistic individual’s expectations for themselves.”
But the implications of an expectation of autonomy go deeper still. An expectation of Autistic autonomy requires that non-autistic expectations for Autistic individuals are, by definition, less important than an Autistic individual’s expectations for themselves. What it means for any single Autistic individual to live a good and happy life, for example, may not accord with a non-autistic expectation of what a good and happy life constitutes; autonomy allows Autistic individuals to decide for themselves what makes them happy, what makes their life ‘good’, and act on it. An expectation of autonomy is the basis to an acceptance approach to Autism, because it requires us to look beyond what might be ‘typical’ and ‘normal’ and instead to listen to, value and actively support Autistic desires and contributions.
Autistic individuals also have the right to expect that an acceptance approach to Autism is more than superficial. An acceptance approach prescribes that we view Autism itself as valid and valued, not that an Autistic individual has strengths and gifts despite their Autism. It simply isn’t enough, for example, to praise a child’s straight line of toys whilst simultaneously judging (even silently) that toy-line to be an inferior example of play than, say, an imaginative game played with the same toys. That patronises Autistic neurology; it assumes that neurotypical judgements about functional play usurp Autistic preferences for enjoyment. An acceptance approach asks you to recognise the inalienable humanity of Autistic persons. It asks you to appreciate genuinely the prodigious skills that the Autistic community offers: remarkable perception, complex pattern identification, orthogonal thinking, analysis and synthesis, objectivity, innovation, and creativity.
“An acceptance approach asks you to recognise the inalienable humanity of Autistic persons.”
Autistic individuals have the right to expect empathy and reciprocity from the people with whom they interact. They should expect that their friends, family, colleagues, professional team, and broader community will meet them ‘halfway’ and attempt to understand the Autistic neurology with as much effort and intensity as Autistic individuals are expected to understand the non-autistic neurology.
Autistic children have the right to expect a childhood. No child should have their childhood sacrificed for intensive therapies and interventions that undermine the potential for that child to experience intactness. Every child should expect to have a childhood characterised by fun and play, even if that play does not align with non-autistic expectations.
It is also vital that you have high expectations of the Autistic individuals with whom you interact. This idea is called the ‘presumption of competence’. Presuming competence in essence means that you expect – presume – that a person can do any particular thing, rather than assuming that they can’t. It’s an idea that is grounded in the ‘least dangerous assumption’ (Donnellan, 1984): if we wrongly presume that an Autistic individual cannot do something – learn, understand, communicate, think, contribute – we often (albeit unconsciously) limit the opportunities for that person to engage in that something, which limits their experience of life. Our perceptions of Autism often drive our expectations of Autistic individuals; our expectations drive the opportunities we offer to Autistic individuals; the opportunities we offer drive the possibility for Autistic achievement, but, ultimately, it is Autistic achievement (or lack thereof) that drives our perception. It is a crucial element of respecting the Autistic population, then, to recognise that expecting competence in the Autistic individuals with whom you interact will give them the opportunity to live their best life.
Motivation and Autism
Like every human, Autistic individuals need motivation to undertake the various task integral to day-to-day existence. Like every human, Autistic individuals need a combination of extrinsic and intrinsic motivators. Like every human, Autistic individuals need meaningful and relevant motivators that respect their neurology and fulfil their needs and desires. Very often, what is motivating for an Autistic individual is something related to their passions, their area of deepest expertise and competency. In pathologised terms, these passions are labelled obsessions or restricted interests, but for Autistics, they are the nexus of great pleasure, contentment and relaxation, and are bound together with increased feelings of self-efficacy and capability. Respecting and accepting Autistic passions – being open to learning how an Autistic passion enlivens an individual and brings them delight – signifies in you the qualities of empathy and reciprocity.
“Respecting and accepting Autistic passions – being open to learning how an Autistic passion enlivens an individual and brings them delight – signifies in you the qualities of empathy and reciprocity.”
Coopting Autistic passions, however, undercuts the fun and joy of that passion, so careful regard should be paid to the relationship between passion and motivation. Passions might be used to increase the meaning and relevance of a particular task or lesson to an Autistic individual, but they should never be used to undermine Autistic autonomy or as a tool to ensure compliance or achieve coercion. This point is especially salient when passions are coopted for rewards (or removed as punishment). For example, a child’s favourite pastime is gaming. One might use gaming to frame their STEM (Science Technology Engineering Mathematics) curriculum or their English and Social Sciences curriculum, or perhaps use gaming to help that child to engage with like-minded peers. However, if gaming is used as a reward for compliance, or to coerce (however subtly) the child’s cooperation, it undermines the passion and enjoyment of gaming. An adult might thus hold the child’s autonomy to ransom by using the power of their passion; by doing so, they risk making an organic interest contingent on external demands. The child may find that gaming is motivating in and of itself, but if an adult uses it to try and entice them to do something they might not otherwise want to do, it compromises the pleasure of that passion. Every Autistic individual has the right to expect that others will respect their passion and not use those passions as a tool to assert ‘power over’. Passions are precious and should be treated with utmost respect.
As an adult interacting with Autistic individuals, your motivation is equally important to consider. Having the right motivation to support and not to change the individuals with whom you interact is paramount. Your core business is to provide only those supports and accommodations that help each Autistic individual to be the best Autistic person that they can be. Your support should be motivated by a desire to increase autonomy, self-determination, self-advocacy, self-acceptance, and self-esteem.
Sensory Awareness and Autism
Differences in sensory perception and awareness are well known hallmarks of Autism. I imagine that most of you will have witnessed some of the complexities and realities of those differences, with most Autistic individuals having some combination of hyper- and hypo-responsiveness to sensory stimuli across any or all of the visual, auditory, olfactory, gustatory, somatosensory, proprioceptive, interoceptive, and vestibular sensory systems. But have you considered the extraordinary gift that sensory differences might offer? Many Autistic adults describe experiencing the world in a kind of technicolour: we experience the world with such intensity that alongside the potential for overwhelm is the potential to grasp the extraordinary, the exceptional, the remarkable. We have the potential to experience the delight, the immersion, the subtlety, the texture of our world through our magnified and receptive sensory processing. And that is a joyful thing.
“Stimming is an entirely organic and natural expression of Autistic joy, although it may also serve many other purposes.”
That joy might erupt as stimming. Stimming is an entirely organic and natural expression of Autistic joy, although it may also serve many other purposes, including self-regulation, emotional regulation, self-relaxation, self-expression, and anxiety management (whether that anxiety is social, sensory, or general). For most Autistics, stimming feels wonderful and liberating: our stimming is a release and a bodily manifestation of our internal state. Just as your laugh indicates your pleasure at a joke, my flapping is an outward visceral expression of my amusement at that same joke. Stimming is my body language, and is as valid a vehicle for self-expression and communication as is neurotypical body language. Just as Autistics are expected to learn non-autistic body language, so too, you can learn to read Autistic stim body language. Thus accepting Autistic stimming and encouraging Autistic individuals to express themselves through stimming is another important way of demonstrating empathy in your relationship with the Autistic community.
I mentioned at the beginning of this manifesto that you are in a privileged position: your interaction with the Autistic community is crucial to shaping not only how the broader community perceives Autism, but how Autistic individuals perceive themselves. In a recent article, Botha and Frost (2018) suggest that the poor mental health outcomes that have been considered as almost intrinsic to, or synonymous with, an Autistic neurology, may in fact arise from Autistic exposure to systemic discrimination and stigmatisation, as well as to the efforts expended by Autistics to conceal their Autism. You have a chance to change that dynamic and to impact positively our Autistic community. I ask you to accept the mantle of Autism ally and see Autism with the dignity, humanity, empathy and respect that the Autistic community deserves.
Image credit: Prawny via Pixabay
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