Passions and Motivation: Why Passions aren’t Rewards

Although I have had some very positive feedback about my Manifesto for Allies, one part of the Manifesto has prompted more questions and discussion than any other section. My stance on Autistic passions has caused some consternation (or at least uncertainty), so I wanted to spend some time expanding and explaining my thinking on this matter further. Bear with me: this post is another long one!

Let me first revisit what I argued in the Manifesto. In the section on Motivation and Autism, I argued:

Coopting Autistic passions… 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.

Before I clarify exactly what I meant in this paragraph, I want to preface the following discussion with two caveats. Firstly, I have not always parented as I parent now. I ascribe to the philosophy of ‘know better, do better’, so my parenting style has evolved as I have learnt more about Autism, about myself and about my children and what works for them (and for us as a family). Secondly, and with that in mind, I currently parent within a ‘respectful parenting’ (sometimes called ‘peaceful parenting’) philosophy. Often people equate respectful parenting with permissive parenting, but that equivalence is an erroneous one: respectful parenting doesn’t imply a lack of boundaries. Rather, respectful parenting has its foundations in reciprocal respect by eschewing more traditional behavioural methods of parenting.

What is respectful parenting?

Respectful parents don’t use extrinsic rewards and punishments to motivate their children to compliance. Instead, we work from the premise that our children are autonomous, whole individuals who are involved in complex relationships, and who need our guidance and kindness to navigate the intricacy that comes with simply being in the world. In our house, then, acknowledgement and conversation are the cornerstones of our interactions, and we operate using the fundamental principles of democracy. I don’t see my children as somehow inferior or even embryonic versions of their ultimate adult selves, but rather as whole and complete beings now in this moment. That means I need to take their preferences and desires into account as equally as an adult’s would be. It doesn’t mean that they always get their way (as so often happens in democracy), but it does allow their positions to be heard and acknowledged.

Fundamentally, my style of parenting is not overly strict, and it shies away from the kinds of punitive and non-empathetic types of parenting that were more common when I was growing up. I try not to manipulate my children. I try to build their autonomy. And I don’t demand a respect from my children that I don’t offer to them. I earn their respect, and expect them to earn mine.

Respectful parenting means I model the behaviours I want to see. I don’t yell, and I certainly don’t punish. When my boys make mistakes, we discuss how they can rectify the mistake if necessary and put plans in place for not making the same mistake again. If I make a mistake, I ‘own’ that mistake, apologise and do my best to fix it (and not to repeat it). I am far from a saint, and it often isn’t easy or straightforward, but these are the parameters within which I operate as a parent.

I’ve come to be a respectful parent because my boys are Autistic, not despite it: respectful parenting seems to me to be the best approach so that my boys can experience authenticity in their Autistic identities, something that I consider to be of vital importance. The boundaries we observe in our house are determined and agreed on by the whole family, and they acknowledge the dual principles that (a) children are learning, and expectations and boundaries should be reasonable and reflective of neurology and age, and (b) nothing is expected of my children that I don’t expect of myself. So, my priorities and needs are not asserted as ‘most important’ because I am the adult. Respect, then, is reciprocal: I find that the more I respect my children, the more they respect me (and, by extension, the family boundaries and expectations). We have a very simple equation in our house: I treat my boys the way I want them to treat me. And something a little less simple, but equally as fundamental: we give primacy to equity over equality.

Respectful parenting (and here we come to the crux of the matter) takes away the need for rewards and punishments. Take, for example, ‘chores’. I expect that my boys will put their clean clothes away. I don’t reward them for doing so. They do it because we discuss — openly and honestly — that putting their clothes away is a reasonable and achievable sign of recognition and respect that I have gone to the trouble of washing the clothes and that I am not my children’s domestic slave. But then again, I don’t expect that my boys would reward me for doing the grocery shopping for the family (something I definitely consider a ‘chore’). That is a fair and reasonable expectation they have of me. I might thank them for putting their clothes away, and they might thank me for making sure there is food enough (and of the appropriate texture, colour and taste) to eat, but there is no reward transaction. When we establish fair and equitable reciprocal expectations based on an acceptance and respect of each other’s needs and on an individual’s capacity to fulfil those expectations, we eschew the need for rewards and punishment.

That doesn’t mean there aren’t natural consequences. One of my boys got upset the other day. He wasn’t in meltdown, he was just really angry. He kicked a few things and threw a few things and generally made a mess. The natural consequence (when he was calm) was that he helped me to clean up the mess (and, indeed, he did the bulk of the tidying). But I didn’t punish him for being angry and losing his calm, or reward him for calming or tidying. And the fact that I was there to help him to clean his mess bore witness to the fact that this act wasn’t a punishment, just a matter of cause-and-effect. That’s my parenting philosophy.

Having said all of that, I know that for some parents, using rewards and punishments are part of their parenting philosophy. And whilst I don’t know that the reward/punishment dynamic works (at least in our house), and whilst I wonder if we don’t do damage by motivating certain behaviours extrinsically, it is ultimately not my purpose to strip parents of a tool if they find it effective in their circumstances.

The problem with using Autistic passions as rewards (and punishments)

The specific issue that I raised in my Manifesto was with using Autistic passions as a reward (by only giving access to passions after behaving or performing in prescribed ways) or punishment (by removing them after proscribed behaviours). As parents or therapists we know how motivating our children’s passions are, so we tend to want to use them to our advantage (not necessarily to our children’s) as a ‘tool’ to make our children do what we want.

But fundamentally, that is coercion.

Using a child’s passion as a proverbial ‘carrot’, by dangling access (or the threat of lack of access) to that passion in front of their nose, to help to ‘motivate’ a child to perform is potentially very dangerous.

Now to be clear: I’m not saying that every reward or punishment transaction is detrimental. What I am saying — very specifically — is that every time we use an Autistic passion-as-reward or passion-as-punishment (that is, every time we coopt passions as a transactional tool), we are entering deeply problematic waters. Each time we use an Autistic passion to motivate a child to do something they otherwise do not wish to do, we are setting their passion in opposition to their autonomy, we are juxtaposing a child’s desire to access their passion against their desire to decide for themselves about themselves. And that is profoundly concerning.

Think about the message that sends to our children, and the vulnerability it creates in them. Think about the future implications. If we train our children to associate compliance and obedience with access to their passions, just imagine the power that gives to any adult for any reason to coerce a child, who becomes an adolescent, who becomes an adult, schooled to expect a passion-obedience transaction.

If a child has no other way to access their passion except through conforming to our authority as their parent (or therapist), what are we teaching our kids? We teach them that they are only worthy of accessing or engaging in their passions when they behave or perform to our parental expectations, which may, or (quite possibly) may not, be reasonable.

And ultimately, I worry that we so often reward our children when they are learning to mask or to ‘perform’ in a non-autistic or more neurotypical way. Teaching and promoting masking through coopting passions might make our lives as parents more comfortable, but it sets our children up for a lifetime of mental health complications, as recent research linking mental illness and Autistic concealment (that is, masking) implies.

And think about how often we punish a child by removing access to their passion when they act Autistically. I know in our house, for a long time, my knee-jerk reaction to my children not being able to switch tasks at my command or desire was to remove access to the thing from which they had had difficulty transitioning. Now I understand more about what the amazing Erin Human calls ‘tendril theory‘, I realise I was effectively punishing my children by removing access to a passion because of their Autistic neurologies, which can make transitioning challenging. Now I find other ways to help my children to transition from a passion to whatever else needs to happen.

Or think about how often we coopt our children’s passions because we assume that as adults we know better than our children what is ‘best’ for them.

One of my son’s favourite thing is gaming. He often uses gaming to help him to engage with like-minded peers, which he can find otherwise challenging. Last week, for example, he participated in an online forum discussing the mythological background to the Zelda games. He was so engaged in the topic that he talked confidently to other children in the forum, who shared his enthusiasm for mythology and Zelda. This experience was an example of how passions can be intrinsic motivators.

But then again, the same boy didn’t want to do his swimming lesson a few weeks ago. I had a choice: I could have ‘rewarded’ him for doing his swimming lesson by ‘motivating’ him with a promise of some gaming at the end of the swim, but that would have undermined his bodily autonomy and his trust that I respect that his passion is not something I can use to assert power over him. I could also have threatened him with taking away his gaming ‘rights’ if he didn’t swim, and admittedly he probably would have done the class. But then again, I would have stripped him of something comforting and fun because he wasn’t obedient or compliant. (And I know from experience that participating enthusiastically with engagement is not something I can coerce or force: his participation in a threat-of-punishment scenario would have been a passive-aggressive protest, and his reticence would have ensured that although he did enough not to be punished, he wouldn’t have learned anything anyway!) As it happened, my boy had tonsillitis and was feeling really unwell, but he couldn’t identify or express that reality in that moment. It simply isn’t the right message if I manipulate him to do something about which he feels uncomfortable because I know the coercive power of his passion. So, my boy sat out of the pool that day and watched his brothers’ lessons and then, when we got home, he fell asleep because he was so unwell. It was a moment to remember that I don’t always know best.

I’m not implying that renegotiating how we approach encouraging our children to behave in the way we’d desire is easy. And nuance is important: nothing is black and white. I will still occasionally ‘reward’ my children when something momentous has occurred. For example, I gave my son a ‘reward’ (although not called that) to recognise the bravery he required to go through with an oral surgery to remove five teeth. The surgery was deeply frightening for him, not to mention a sensory nightmare, but was necessary because he had extra teeth and significant, detrimental overcrowding. The ‘reward’ for that particular surgery was related to one of my son’s passions. But… I didn’t use the promise of a reward to convince my child to undertake the surgery, and I didn’t use its motivating power to influence his thinking about the surgery. Instead, I used it after the fact as an acknowledgement that his actions (having the surgery) required commitment, courage and maturity.

So, my conclusion is that we must take the utmost care when we use passions (either as reward or punishment) to ensure that we are not coopting those passions to increase our children’s masking behaviours, or as motivators to conceal our children’s Autistic selves, or to undermine their sense of autonomy, or to coerce compliance. Obviously there is a level of subjectivity and judgement required here. In part, how we use passions is a matter of degree: if your child has regular access to their passions beyond as a reward or punishment, then that is a different scenario than if the only way a child can access their passion is through obedience. It is also a matter of motivation: are a child’s passions appropriated to change their organic Autistic selves, or to support them to express that authentic identity? It’s not a matter of all or nothing. I simply ask you to consider your motives and the context when you use rewards, and encourage you if possible to find rewards outside a child’s deepest passions. As I said at the beginning, these should be respected and cherished with the reverence they deserve.

One last thought. I use my passions and my boys’ passions to help me (and them) as a diversion. That diversion is not always calming, but passions offer a way of redirecting us to something we love, something that makes us happy. Consider that passions might better be utilised to help us out of a current mindset (for me, for example, overly anxious, overthinking, panic attacks) and to reset.

An example: last week I ran late for an appointment (it was not my fault, but my brain didn’t care that I couldn’t have predicted that a usual twenty-minute drive would take more than an hour and half). I was driving. My hands started shaking and I could feel my heart palpitating. One of my current passions is Dungeons and Dragons, and I am learning how to be an effective and engaging Dungeon Master. So, I talked to myself about my latest campaign, and how I could lay out different puzzles for my players, and how I could use Völsunga saga as a plot backstory. It distracted me enough from my anxiety that I could centre and manage my own emotions. That’s the power of passions. They can work as a diversion.

Importantly, though, this strategy wouldn’t have worked for me if I had threatened myself with not being able to think about D&D later unless I calmed now, or if I rewarded myself for calming with the promise of it. I needed the passion itself to help me to calm, to distract me to a happier headspace.

When my eldest son was first identified as Autistic, I took a course on Positive Behaviour Support, which relies heavily on rewards. I wanted to be a positive parent, so I ended up rewarding my son for everything: eating healthily, going to school, going to bed, getting ready in the morning. Other than ridiculously expensive, I quickly noticed that rewards lost their efficacy over time. I also realised that there was just so much that I was expecting my boy to do that required rewarding, because of how difficult it was, or how challenging, or how much bravery it required from him. Then I noticed that his interests dulled more quickly, and that the promise of a reward stopped outweighing his need to behave in ways that deviated from the ways I wanted him to behave. It was an epiphany to realise that all of my ‘rewarding’ had stripped the joy from my son’s passions because I had made them contingent on the types of behaviours he would find hardest. At that point I started my own research, my own analysis, my own exploration: I knew there must be another positive approach to parenting, an approach that was more sustainable, more financially viable, and more respectful to my son and to the depth of his passions. You don’t need to adopt respectful parenting to think carefully about the ways in which you use your child’s passions. But I sincerely hope that next time you go to utilise Autistic passions, you examine carefully your motives and consider the implications of your choices.

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A Manifesto for Allies Adopting an Acceptance Approach to Autism

Background

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 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.

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.

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.

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.

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 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 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.

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.

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 behooves 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.

Autistic Rights

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. 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.

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.

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.

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 expectthat 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.

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.

Conclusion

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.

 

The Gift of Unconditional Love

Very often when I talk with parents of Autistic children, especially parents of Autistic children who are non-traditional communicators, one of their deepest and most abiding fears is that their child will never say the words, ‘I love you’ to them. It seems to many parents to be such a fundamental and profound need, to hear those words, spoken by their child, in their child’s own voice, like it is the ultimate proof of the bond between child and parent, the paramount evidence of shared devotion. And from the murmurings of sympathy I hear from other parents, many share this view.

And yet… I wonder about the visceral grief parents feel when they find themselves facing a future in which they may not hear ‘those words’. I wonder when words became so important, and when having a metaphoric voice became synonymous with having a literal one. Does a child who uses AAC (Augmentative and Alternative Communication) to say ‘I love you’ say it with any less conviction for not using their vocal chords? Does the fact that a child uses signing to say “I love you” undermine the depth of their feeling? Does a child who shows their love through their every communication and behaviour, but not with their words, feel that love any less?

It’s the last one, isn’t it, though? Because ultimately parents doubt their entirely subjective interpretation of their child’s intention in particular behaviours. Does their child’s smile constitute a declaration of love? Does a cuddle? Does their son’s preference for their company, above everyone else’s, speak to his love for them? Does it indicate love when their Autistic daughter seeks comfort from them, and believes that they can give it to her? What about when their child simply glances in their direction, to make sure they are still there? What about when their son trusts them, and them alone, to touch him, even though he anticipates that their touch will be excruciating? Is this love? Is it a declaration of love? Is it enough?

I would answer emphatically yes. Our children communicate their love to us every day, through their actions and behaviours. Sometimes that communication is obvious: my littlest likes to make his fingers into a love heart sign and then point to me. Sometimes it is more subtle and nuanced. When my eldest sits next to me, he likes to rest his foot on top of mine, just to show me that he is there for me, and to assure himself that I am there for him. Sometimes as parents, we just have to learn to read the signs better, and to trust our children that those signs are there. Because, for the most part, they are.

One of the few idioms I really understand is the one about ‘actions speak louder than words’. When I googled that, the first thing that came up was: ‘people say things and make promises they have no intention of keeping on a daily basis. You can tell someone you love him or her as many times as you want, but until your behavior coincides with that, the other person will probably not believe you’. And isn’t this the crux of it? For me, I’d much prefer to experience love from my child than to hear it. I’d much prefer them to show me that they love me — in whatever under- (or over-) stated, idiosyncratic, unique way that suits them — than to hear recited words on automatic recall. (Cue Extreme crooning ‘more than words’, and all that.)

And if that’s true for our children, then it is so for us as parents as well. Most of us offer our children the words ‘I love you’ regularly. But do our actions always reflect that declaration? By just saying ‘I love you’ to our children, do we make it so? Will our children see our love in our actions and interactions with them? Will they believe us?

Unconditional love. It’s what we expect of our children: despite our good days and bad, despite our crotchety moods and accidental mistakes, despite our loss of emotional control, that cutting edge to our tone when we’ve had a long day at work, our exasperated lack of patience, the odd moment of lapsed empathy or judgement … we expect that our children will forgive us unconditionally and love us nonetheless. My question, though, is whether we parents offer that same unconditional forgiveness and love to our children? Of course we love them in that biologically-charged kind of way, because they are our children, but do we actually like our children? Do we enjoy their company and find happiness in their presence? Do we really love them for the exceptional, joyous, wondrous beings that they are? Because, if we do, that means loving their Autism, too.

Recently, I was reading an academic article about parenting children with disabilities (not just Autistic children, but very apposite in an Autistic context). The authors lamented the way in which, after a child’s disability diagnosis, parent education often insists that interventions and therapies are inserted into every aspect of a child’s life, even into their home life. This intervention-focus negatively impacts on the way in which parents are able to express their unconditional love for their children. By overlaying ‘intervention’ and ‘therapy’ into every aspect of a child’s childhood, parents make the home an unnatural, performative environment. The authors argue that, over time, children internalise the message that they are not worthy or deserving of unconditional love as they are, that they must change, perform and mask in order to be gifted love. The message is not explicit, nor is not necessarily consciously intended, but children soon come to the understanding that they are unacceptable and unlovable as they are (Turnbull et al., 1999). For our Autistic children, they come to the understanding that — whilst Mum and Dad love them as part of that primal urge to love and and protect one’s progeny — they aren’t necessarily likeable as unique human individuals. They internalise the understanding that in order to be more likeable and more personally, profoundly lovable, they need to perform less-Autistically.

But our children have a right to know that their Autism is loved unconditionally too; they have a right to have their identities accepted and loved by their parents. More than that, actually: they have a right to have their Autistic identities appreciated and liked by their parents. Because loving, accepting and appreciating all aspects of our children, including their Autism, gifts our children a sense of intactness (a word I’ve taken from the Turnbull et al. article). ‘Intactness’ is the simple concept that all aspects of identity, of self, are valued as an integral and positive part of an individual. This concept of ‘intactness’ is a key one: all children should feel lovable (and likable) as themselves, authentic and unchanged… intact. The freedom to experience ‘intactness’ of self is essential for the development of healthy self-esteem and positive self-regard, and is based in part on a ‘parent’s ability to show pride and pleasure in the disabled part of the body, as one valid aspect of the child, and to communicate appreciation and respect for the child’s unique, often different-looking ways of doing things’ (Turnbull et al., 1999, p. 165).

If, as parents, we don’t value our children as whole and complete, if we don’t view our children as worthy of our unconditional and unqualified love, and if we don’t acknowledge and accept their value to our community, our children will grow up with the perception that they must change their essential selves to deserve our unconditional love.

And, of course, if they must change themselves to be loved, our love is not unconditional at all is it?

Let’s face it, if our children internalise a need to change to be loved, that is tantamount to them being unlovable as they are: Autistic. Unfortunately, ‘parents too often communicate to their child, directly and indirectly, that the disability should be hidden or altered, if not purged — the child should strive toward appearing as “normal” and nondisabled as possible’ (Turnbull et al., 1999, p. 166). This striving towards normalcy, the effort to conform to the homogenous ‘typical’, sacrifices a child’s intactness, their wholeness, their identity… It sacrifices their sense of self.

How, then, should we parent? I have written before about the important of investing in your relationship with your Autistic loved one (https://reframingautism.wordpress.com/2018/10/15/investing-in-relationships-the-core-business-of-parenting/). That is fundamental. But ultimately, I think we must approach parenting from our child’s perspective. We must offer them the kind of unconditional love that we expect for ourselves. And we must understand what is valuable by listening to the voices of other Autistic children and adults. We must develop a genuine respect for Autism and for Autistic individuals, as valued and valued, whole and complete, worthy of unconditional love, and deserving of unqualified inclusion. We have a responsibility to do better for our children and to embrace their intact identities. As parents, as a community, we have a duty to match our actions to our words, to demonstrate our unconditional love by embracing our children as they are, not as we’d like them to be. For our own children, and for each other’s. Our children deserve that.

Investing in Relationships: The Core Business of Parenting

At a workshop a few weeks ago, I was talking to parents about how they spend their time with their children. We were talking specifically about how they devote themselves to their Autistic children. There is no doubt that parents are busy. The struggle of the juggle is real. Work, domestics, parenting … they all very often result in parents being stretched too thinly. Let’s face it, it makes me exhausted just thinking about the never-ending rotation of cooking, cleaning, washing, groceries, ironing, not to mention the diplomacy required to negotiate the tricky business of sibling interactions, or the extra-curricular routines that require a dedicated taxi service, or the day-to-day skirmish required to achieve clean bodies, hygienic teeth, full tummies. And, for many parents of Autistic children, you can add into that mix of commitments appointments, therapies, interventions, planning and executing funding agreements, working on goals, lack of sleep, repeated meetings with schools and preschools, preparing visuals and social stories. The list goes on. It wasn’t a surprise, then, that the parents with whom I was speaking at said workshop talked about the time they spend with their Autistic children in terms of appointments, therapies, and the general overwhelm of ‘jobs’ to be ‘done’.

We are very low on therapy in our family. We do only just as much as we need, and nothing intensive. But even still, I am entirely sympathetic to this position. I’m an Autistic Mum, homeschooling her three Autistic boys, working part time, a volunteer, a writer, and the designated keeper of ‘home duties’. It’s a lot. But I’m lucky: in homeschooling my gorgeous boys, I have an opportunity that many other parents miss out on… I have the opportunity to invest deeply in my relationships with my boys.

So, to those parents who are swamped by the ‘jobs’ to be ‘done’, by the appointments to attend, by the therapy goals to achieve, I want to offer a different perspective. I can’t take away the need to provide clean clothes or to satiate hunger. But I invite you to stop and reflect on the core business of parenting. I’d suggest that the real core business of parenting – and especially parenting an Autistic child – is not to insert therapy and intervention into every moment of their life, not to focus on their development at every turn, not to engineer every moment for social skill development, but instead, very simply, to invest in a genuine, unconditional, compassionate and loving relationship with your Autistic child.

What do I mean by investing in your relationship with your child? Well, I’m talking about relating to your child beyond satisfying their biological needs and beyond working towards your priorities for their development. It’s not about taking them to the park to expend some energy and watching them play, although that may be involved; it’s not about ferrying them to soccer on Saturday morning or Drama after school and watching them participate. I’m talking about actively and consciously becoming your child’s companion and their friend, learning from them to marvel at the berries they pick in park, sharing with them in a moment of wonder and satisfaction at a perfectly organised line of toys, appreciating fun and play in the way your child does.

Investing in your relationship with your child is about getting to know your child on a profound and authentic level, so that they know that you not only love them because they are your child, but that you love them because you genuinely enjoy spending time with them: that their company is so enjoyable to you that it is worthy to be given some of your valuable, precious time. Play with your child, engage in their passions, stim with them, and accept that whatever they do, you can find delight in doing it too. And by play with them, I don’t mean ‘playing’ within some normative construct of turn-taking and sharing and imagination, but the very simple idea of engaging in something for enjoyment, with no expectations or prescriptions.

Sharing in your child’s passion is powerful. Before I had my children, I was typically Autistic in my deep and abiding passion for one subject. Since I was seven years old, I have been interested in one, single subject, to the exclusion of all others. I spent my whole primary and secondary school career waiting for the moment that I could do a degree devoted to my one subject, then I did a PhD  in it because I Just Needed More. For me, that subject framed my everything. You couldn’t understand me, couldn’t connect with me, couldn’t enjoy my company, unless you were willing to engage with me about this particular subject. Because I have the insight of this lived experience, I understand that my children have similarly consuming passions. And I know that just as I felt most loved, most competent, most alive, most connected, when someone invested in me by investing in my subject, so too do my children.

When I say that my subject is totally and completely unrelated to steam trains, war planes, the universe, and bats and zombies (my children’s areas of passion), I understate the distance between my children’s interests and my own. But just today, I have invested hours with my littlest guy investigating the differences between Megabats and Microbats, their anatomy, understanding echolocation, and exploring the unique quality of the membrane that makes bats’ wings so incredible. We talked. We researched. We watched YouTube videos together. We trawled the internet for every single bat plushie available online. We debated which would be best to go on his Christmas list. Maybe that doesn’t sound like play. But it was for him, and who am I to say otherwise? And at the end of the those hours together, he and I had shared something intense and exceptional and utterly delightful and enjoyable. We shared companionship and friendship and love. And he was so generous with his passion, his enthusiasm, his pleasure. For those precious hours, when it was just him and me, with no jobs, no motives, no goals, we could just appreciate each other’s company and love. We could enjoy each other.

Now don’t get me wrong. I still don’t find bats an especially compelling subject. I shall not dream about them tonight. But, well, it was fun learning about them today, partly because I loved seeing my son’s enjoyment, and partly because, to be honest, it was liberating just to be curious. My son’s passion was more than enough to ignite an eagerness in me to learn, to be educated. He made me a better person today, and certainly a more knowledgeable one. It’s not always that case that your children’s passions will excite you deeply. One of my children loved flicking light switches on and off. Another enjoyed watching the blades of fans rotate. There’s not as much there to interest my intellect. And yet, sharing in my children’s joy, recognising and being instrumental in their happiness, trying to see and to experience what they find compelling about these pursuits… well, that’s more than enough motivation, and reward, for me.

Which brings me neatly to something I’ve noticed since I spend more and more time investing in my children’s passions. For the longest time, I framed our interactions by using rewards. Rewards which accumulated over days and weeks to motivate my children to do the things that needed doing. Extrinsic motivation. Goal-driven motivation. What’s incredible to me is that as I have dedicated more and more of my time investing in my relationship with my boys (mostly, as I said, by engaging and playing with them around their areas of passion), I have noticed that rewards and extrinsic motivators have less and less currency in our house. Part of that decrease in rewards stems from the general increase in well-being and happiness that accompanies someone (i.e., me) valuing something of value to you (i.e., my kids’ passions). And part of it stems from our new (and I’m arguing, better) relationship. My kids come to eat dinner not because they necessarily want the dinner I’ve cooked, not because they don’t want to finish whatever they’re doing  at the moment before dinner, and not because I’ve offered them a tokenistic reward to do so, but because they actually enjoy spending time with me. And they know — really, properly know — that I enjoy spending time with them too. They know I will ask knowledgeable questions about their passions. They know that their preference for a topic of dinnertime conversation will not just be tolerated, but actively embraced. I am not resigned to engaging with them, I relish it.

Looking back, I am honest enough to realise that I often used rewards to abrogate my responsibility to establish meaningful relationships with my children. I rewarded them into compliance because I was too busy to dedicate the time to invest in building the relationship. It wasn’t a conscious decision, but the busyness of life trumped nurturing a reciprocal connection with my kids. But now, the relationships I carefully and consciously and continuously foster with my children has become their intrinsic motivation. They are loved, and they love, and it is joyful. For me. And for them. The attachments that I share with my children don’t negate every challenge, or provide solutions to every barrier we face. But those challenges and barriers are far less daunting now, because at the end of each day, I truly appreciate what wonderful humans my children are, and they appreciate that in themselves.

Introspection on Education

Currently in Australia, parents are scurrying to find the right educational setting for their Autistic children beginning school for the first time. Or for their children changing schools for the first, or second, or third time, as previous educational settings have become untenable or unworkable or detrimental to their child’s mental, emotional, social or academic health. Or all of those things. Our school year follows the calendar year, and I know many, many parents who are searching desperately to find the perfect fit for their Autistic poppet for the new year. Or, more accurately, who are searching for an adequate educational fit for their child.

I can’t help but think that the worry that this decision causes, and the burden that parents carry — the weight of whether their choice of school environment is the right one for their child and what harm it might do if they’ve got it wrong — speaks volumes to the state of education here.

Ostensibly, it may not seem like writing about schools is a good fit for me, since I homeschool my children after I withdrew them from school, and have no real intention of re-entering them into the mainstream (or any other) system unless they desire it (which, for the record, at this time they vehemently do not). But I am almost as passionate about all of the other Autistic children who find themselves in educational institutions as I am about my own children. And the fact that so many parents agonise as to whether to send their child to a mainstream environment or to a specialist support unit or school, the fact that I know parents who are selling their homes to relocate to the only school they’ve found that might cater for their little one’s particular needs… well, that is both tragic and emphatically unsatisfactory.

Truth be told, I find it deeply troubling, if not downright abhorrent, that many parents of Autistic children have become resigned to holding the educational system to the standard of ‘not actively damaging’ because their efforts of trying to achieve excellence for their children have been thwarted again and again. It’s not parents’ fault. It just speaks to the reality that, when the hope for an exceptional education for our children has been dashed time and time again, when that optimism has been ground away by years of benign neglect or outright bigotry, all that is the left is the ‘hope’ that our children’s schools do no harm, even if they do no good either.

Perhaps I sound bitter. I am. I think a systemic failure to see my magnificent, creative, unique boys as anything but wonderful is a travesty. But that’s not the point I want to make here. If I could fix – even just bring attention to the existence of – some of the pervasive and shockingly damaging practices that are prevalent in schools (usually born from ignorance or misguidedness rather than conscious prejudicial intent), other Autistic children may just fare better at school than my children did.

In Australia, our educational system is far from inclusive. Unlike in some other countries, we still have segregated Autism support units attached to schools, as well as specialist Autism schools. To be fair, there is such a gargantuan gulf between our country’s current mainstream educational system and truly inclusive schooling that parents need alternatives for if (and, all too often, when) mainstream schooling fails or harms their child. Or, indeed if they can’t see their children succeeding in mainstream in the first place because, well, did I mention that most mainstream schools are still so far from inclusive? So currently, those units and specialist schools serve a purpose, at least until we improve our mainstream services. And whilst we know that research shows that mainstream inclusive schooling is best for everyone and is preferable to segregated disability-specific support units or schools, many parents rightly question whether this research is applicable to them and to their child’s lived reality, when their local mainstream school may be a very far cry from inclusive.

The reality in Australia is that we have a very long way to go to make education optimal for our children. Inclusive education — the ideal that everyone is educated together — is not really even on the political and social agenda in Australia in any significant way, and we’re not really even discussing what might make mainstream schooling more inclusive. In a country that still questions climate change and has an abysmal record on many social justice issues, inclusive education is simply not a compelling or politically expedient topic here. 

And, just to clarify, by inclusion I mean genuine inclusion for our Autistic community, based on Autism acceptance, a commitment to allowing Autistic children to claim their Autistic identity and to learn and socialise Autistically, and the deep pedagogical knowledge to implement methods of teaching and learning that suit Autistic neurocognitive processing. I don’t mean the superficial use of ‘inclusive’ to designate the unsupported integration of our children into mainstream classrooms, or the attempted assimilation of Autistic children to become more typical, more ‘normal’.

I should feel more optimistic about our children’s education: there are inspiring individuals and individual schools doing good work to make educational settings accepting and respectful of Autistic neurology and functioning. But I’m not especially optimistic. Or at least, my optimism is for my potential grandchildren rather than my own children, because the road to inclusion seems very long and rough indeed.

Perhaps my pessimism stems from a flaw I am observing in the current trend in educational thinking as it’s actually practised in schools. You see, there’s a glaring oxymoron in the current educational approach that tempers my confidence in the prospect of an educational revolution. Fairly recently there has been a shift in educational thinking that sees teachers identifying and utilising Autistic strengths and interests in the classroom. Awesome, I hear you say; surely not too much to complain about there. And yet… whilst I have absolute faith that some teachers are using Autistic strengths and interests to maximise our children’s enjoyment of, and engagement with, their education, there is simultaneously a certain undercurrent that makes me uneasy. Strengths and interests are too often used to counterbalance a deficits-based or pathologised approach to Autism. A teacher’s acknowledgement of Autistic strengths is too often laced with a paternalistic and patronising nuance, offered as a consolation prize, offered from a place of condescending superiority.

I don’t want to suggest that this is done consciously (or at least, not done consciously by everyone). But simply mentioning Autistic strengths doesn’t negate a deficits view of Autism. Benignly identifying strengths whilst concurrently treating Autism as a ‘disorder’ (however it may be identified in the DSM-5 or ICD-10) undermines the very idea of strengths. There appears to be a decidedly self-congratulatory mood among departments and systems that so many teachers have finally recognised the truth of Autistic strengths. And yet, the parents I talk to suggest that if you scratch beneath the surface, the idea of strengths is regularly used as a veneer to mask more prevailing, deficits-based approaches to Autism. As I said, I’m not sure this subtlety is always intended, but it strikes me that too many educators (and indeed researchers for that matter) still hold onto a basic ableism that sees Autism as different and less. But they reconcile themselves to that (very probably) unconscious bigotry and make it more palatable by what is necessarily a superficial reference to Autistic strengths.

Recently I was at a conference about Autism and education. The people who came to that conference were those who are dedicated to understanding best practice in education for our children. There were excellent speakers, inspiring presentations. And yet… I suppose what I really hoped for at the conference was to hear about how schools are supporting Autistic culture to flourish, about how they are respecting Autistic ways of socialising, about how they recognise that accepting their Autistic students exactly as they are, and accommodating their needs appropriately, is vital to each child’s self-acceptance and self-esteem, not to mention their learning and intrinsic motivation to attend school. I had hoped to hear those things in stereo, from different sectors, states, schools. It wasn’t reasonable to expect to hear those things, of course. As an Autistic mother, my priorities for education are not necessarily aligned with the priorities of schools and departments. But I had hoped that maybe somewhere I might hear someone offer the ‘silver bullet’ that would put us firmly on the road to genuine acceptance and inclusion. I had hoped that the number of speakers advocating for acceptance would outweigh those still holding onto Autism as disorder. I had hoped for more teachers, more principals, more learning support staff to attend, to show me that schools know that there is more to do, and what they currently do is simply not enough.

I’m not sure what my point is here. Expect excellence for your child? Accept nothing but the highest quality education? Unite our voices to demand more, better, best for our children? Or maybe just the simple reflection that, ultimately, however far we’ve come, there is so very far still to go.

#TakeTheMaskOff (But What if I Don’t Know How?)

This afternoon I was describing the concept of Autistic masking to a close friend, who is not directly a part of the Autistic community. I explained that currently there is a robust campaign for Autistics to take their masks off, and to be who they are, authentically and genuinely, without censure, guilt, discrimination or repercussions.

I told my friend about the way in which, as an Autistic woman, I use masks to camouflage my less socially accepted traits and behaviours. Masking helps me to behave or perform in a way that is congenial and expected for the neurotypical majority, a way to let others experience my Autism more comfortably for them… although not necessarily for me. Masking allows me to compensate for my perceived deficits by constructing identities that are more conventionally satisfactory to those I am around.

Masking certainly isn’t solely an Autistic attribute: I think most people mask in different social contexts. I know my neurotypical husband demonstrates different qualities when he goes to work, or when he returns to his home town to visit his college mates, and undoubtedly this adaptation is a type of masking. But for me, I’m pretty sure the intensity and focus of my masking is different. It is the comprehensive and elaborate nature of my Autistic masking that makes it distinctive.

It should have been easy, then, to provide my friend with a kind of ‘compare and contrast’ between my masked self and my real self. But when I tried to use examples from my own life, I just couldn’t manage it.

It’s not that I don’t mask. On the contrary, I am an expert masker. But I am such an expert masker, and I have developed my masks to be disguises of such nuanced, subtle, finessed complexity, that I struggle to find myself… And as I contemplated writing this blog, it occurred to me: I don’t know who I am.

So many of the other Autists I have read during #TakeTheMaskOff campaign have some sense of who they are when their masks are laid aside and they present as their natural, authentic selves without affectation or artifice. But I don’t. I don’t know who I am. And despite my best efforts, I can’t identify where my masks stop and my ‘me’ begins. So, on the cusp of turning forty, I now realise that masking is so habituated for me that I have no sense of myself without them, no access to a ‘me’ sans masks.

I have spent so many years refining my masks, observing how others behave and speak and perform, and shading my masks into accurate and intricate devices for mimicry: the trappings of my social acceptance, disguising the quirks that might exclude me. I have spent so many years arranging my face, my responses, my outward emotions to fit the patterns I’ve observed in others, to present myself as the type of person I perceive others want me to be.

And now, now that I have a moment to strip that scaffolding away and show me as me, I can’t find her. She’s buried beneath the weight of expectations and artificial, learned pretension.

But then a part of me thinks that that’s reductive, and not a little unfair. Because some of my masks are comforting. They are reliable. They make me like myself. They let me be the sort of person I want to be for the people I love. I am a pleaser, a rule follower, someone who spends considerable time and energy making sure that I am making others happy. The ultimate good girl. And masks have  — absolutely and undoubtedly — let me be that person. So, I think that I have to recognise that some masks I wear for me, because I like to please.

Maybe that misses the point of the call to #TakeTheMaskOff. But some of my masks serve a distinct purpose that is not only useful, but essentially enriching, helping me to manage parts of me that might otherwise be debilitating and incapacitating (like my anxiety).

For example: I am an excellent public speaker. I enjoy speaking to a crowd. And I have spent years perfecting my public speaking mask to cover the queasiness in my stomach and the bile that sits in my throat. My mask translates all the energy that amasses in my anxious, flappy hands into animated gesticulating which people read as passion and charisma. I tweak my mask to fit my script, smoothing a furrow here, deepening my tone there, projecting empathy, channeling outrage… I put on my public speaking mask and I feel confident, articulate, insightful, valuable. I have something to contribute. I speak and people listen.

But then again, when I take that mask off, I feel relief. It is me in high performance mode, and I have no stamina for perpetuating that performance over extended periods. It is simply too exhausting. But even as the bile recedes and the nausea subsides, I swap one mask for another, more comfortable version. Less energy and maintenance required. But nevertheless, another mask.

In the past, when I visualised my brain, I used to see a complicated filing room, with scripts for every scenario I’d ever encountered, reworked for success. Now, alongside the rows of filing cabinets, all carefully categorised, I see a Game of Thrones-esque Hall of Faces – the bodiless skinned faces of my various masks that camouflage and disguise me. They are all me, ostensibly, but they are all subtly distinct, representing the shades and tones of my different personas. It isn’t scary, until I wonder which one is the real ‘me’. Until I realise I may have lost her in the rows of faces that are me, but not me.

Last night, as I lay awake, I could hear and feel my husband breathing on one side of me, my little boy on the other. They weren’t breathing in sync. There were snorts, and gushes of breath, murmurs and rumbles. Each exhale grated against my senses. I could hear the excess saliva in the slight gurgle, the minor nasal blockage in the undercurrent of a whistle.  It felt like every breath was a cattle prod to my ear drums, sending unpleasant jolts through my brain. I wanted to wrench off both my ears so great was the internal pressure I felt from those seemingly insignificant noises. I wanted to strike out, flee, break free from the suffocation of hearing that breathing. But I didn’t. I buried my needs, suppressed my desires, pushed them down to the remotest part of my being, smothered by my Hall of Faces.

It is similar at the dinner table. The noises of slurping, chewing, swallowing, the tinkle of fork against teeth, the gulp of water, the sloppy sounds of mastication… In those moments, if I visualise myself, I am a small child, curled defensively in foetal position, rocking, cupping my ears, waiting for the pain of the noise to subside. Pain perhaps isn’t the right word: it is an unbearable pressure that pushes to explode outwards. And through my masks I have taught myself to push that pressure down into an internal implosion, unnoticed by those around me, unremarked upon as I continue to present a façade of serene apathy.

Is that who I am? The trapped girl inside my mind, weighed down by an inescapable need to please, to bury herself in layers of acceptability and neutrality? Repressed. Suppressed. Inhibited. Intimidated by the need to be something other than myself, to stifle and internalise the inherent Otherness inside. I don’t know.

A few weeks ago, my Mum was watching old videos of me as a little girl of maybe eight or nine. It was my birthday party. I was happily playing party games with my friends, laughing, blithe and relaxed in the social context. My Mum noted how profoundly ‘typical’ I appear. Not Autistic. Not Other. Not isolated. And I wonder: was I masking then? Was I already developing this complex tapestry woven from threads I adopted from observing others upon which I now rely so heavily? Was I already binding myself to their comforting familiarity, living my life essentially vicariously? Having no sense of self, have I always just adopted the characteristics of those around me to ‘fit’ into the contexts I find myself?

I don’t know what it is to feel myself, but I know what I like – what I am like – when I am alone. And I really like to be alone, although I have rare opportunity for that. I like to listen to the same song on repeat for hours. I like to dance and move to that song, choreographing the perfect response to the music. I like to pace and speak aloud to myself to process what I’ve done, what I’m doing, what I want to do. Actually, I love talking to myself, and together with me, I have protracted and involved conversations aloud, debating, listing, planning, organising. I like my house to be just so, the cushions on the couch on the right angle, with the zipper facing down, beds made and wrinkle-free, towels hung up with the folds on the right, the bask facing out, tags facing in. I like to eat often and small, without reference to set breakfasts, lunches and dinners. I like to have a hot tea constantly in my hand. And I like to have the fans on, no matter the weather.

Are those preferences ‘me’? Is that ‘me’? If I gave myself more of an opportunity to explore that woman, would I find myself amongst the masks? I don’t know. I hope so.

Since we met, my now husband has told me that I am more tired than I should be. That probably sounds patronising, but it is more of a clinical observation of my state of being. I am constantly wearied, exhausted, chronically and acutely fatigued. Even when I am well rested, even when I have little happening, I come to the end of each and every day with a heavy sense of being utterly drained, shattered, spent. And as I have thought more and more about masking, I think I finally understand why I am always, permanently tired. The effort I expend to internalise and quell myself, and the commensurate effort I expend to don and maintain my masks, is immense. And that massive effort is exhausting, a gargantuan undertaking that depletes my vitality and undermines my energy. And how can I find the strength to find ‘me’, when I have spent all that strength on preserving my masks instead?

Ultimately, masking for me is liberating and debilitating in equal measure. I don’t know how to take my masks off. I don’t know how to live without masks. And they provide me with opportunities to be what I need to be for the people I love. But living a masked existence has robbed me of me. And I owe it to myself to try and find me. I owe it to the people I love to trust them enough to get to know me too. Even if I don’t  feel ready to #TakeMyMasksOff completely. Yet.

About Me

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Hi there!

Welcome to Reframing Autism.

I probably should have written this post first, but it didn’t really occur to me that it might be helpful for you, my readers, to have an introductory paragraph or two (OK, so in all likelihood, more than two) about me, until someone asked ‘so, who are you?’. Good question.

But how to answer? What labels do I apply to myself to transmit to you — accurately and objectively if possible — the kinds of information that you might find interesting or helpful or (as the writer in me hopes) both?

First and foremost, I am a mother. And then a wife. That sounds like a terribly antiquated way to view myself, but my job as a Mum to my three, spectacular boys really is defining for me.  When I think about myself, my family is foremost in my mind, so to me it is natural to go with the Mum and the wife first. And I should probably note from the outset that I don’t see such ‘defining’ labels as necessarily ‘confining’. I like definition and meaning, and I know that whilst I am more than ‘Mum’, I can’t not be ‘Mum’. It defines me, but it does not confine me.

And then… Autistic, I think. It’s who I am, an intrinsic and dominant thread of the tapestry that is my identity. I am a multiply neurodivergent writer, who is Autistic. So I am an Autistic Mum to three multiply neurodivergent sons, who are all Autistic too. Our family is a little microcosm of Neurodiversity Utopia: we accept, respect, and celebrate our neurodivergences, together and with deep love. A lot of my posts will reference my boys, but this blog is not about them. Their stories are not mine to tell. So you’re stuck with reading primarily about me, and my thoughts.

I’m a teacher. Well, not in the traditional sense. But I home-school my three boys because mainstream schooling failed them in ways that were basic and staggering and devastating. And because their mental health — and mine — depends on acceptance and respect, which seems in short supply in educational environments (at least near where I live). And because I want them to be happy and safe, and in school they were neither. And because — despite the fact that they can’t be easily judged by standardised testing, developmental markers, and academic norms — the way in which they see the world, and process information, and make connections, is so truly inspiring and amazing and unique, that I didn’t want them squashed into the four walls of a traditional curriculum that was neither relevant to their interests, nor meaningful to their experience of life.

I’m a professional. I write. I have a PhD. I have postgraduate qualifications specifically in Autism. I research, particularly within the Early Childhood Intervention space, but for the disability sector more broadly. So, I write academically. But I write like this too — for myself, and for you. I try to make a difference for our Autistic children and our Autistic community. I suppose that makes me an Advocate too.

I have other labels too. More subjective ones… or at least, less objective ones. Chocaholic. Passionate. Verbose (actually, that one’s pretty important for readers and you should probably know that brevity and succinctness are not my strengths if you’re reading my blog). Perfectionist. Organised. Hyper-emphathetic. Anxious. Arthritic. Clumsy. I love stim-dancing, reading (think Isobelle Carmody and Tolkien and le Guin), writing (fiction, non-fiction, academic, personal — words on paper or screen are magical to me), Medieval History (especially Old English and Old Norse literature), Autism, and earrings. I am eclectic (Guns N Roses plays through my headphones as often as Tchaikovsky’s Swan Lake), but I like predictability. I prioritise equity over equality, and I yearn for justice and authentic inclusion. For myself, and my boys, and our community.

And why this blog? I want you to come here and see Autism differently. Positively. With hope. And optimism. To see the joy, not just the challenges. To celebrate the potential. To see Autism how I see it… with acceptance, respect, and a deep appreciation for the beauty and happiness that is being Autistic.

So, welcome. Happy reading. Enjoy. Together, let’s eschew the pathology, the deficits, the exclusion, and Reframe Autism.