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.

 

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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.

A Plea to Diagnosticians

Dear Diagnosing Professional,

See those parents sitting in front of you? Yes, the ones with the shadow behind their eyes, the furrow on their brows, the ones whose worry is a palpable aura surrounding them as their eyes dart between you and their child, sitting on the floor at their feet. See that father who sits with his arms crossed, leaning away from you as if to escape what you’re about to say? See that mother who is eyeing you with a mixture of hope and fear?

They know what you’re about to say. They know you saw it the first time they introduced their child to you, the first time they watched you watch their child flap and spin. They saw the way you looked at them and at their child, when they told you about their child’s language delay, love of lining up their soft toy collection, fascination with the ceiling fans. You saw it immediately, their child’s Autism, and today – after you’ve tested and assessed – is the day those parents know you are going to tell them that their child is Autistic. Or, more probably, that their child ‘has Autism Spectrum Disorder’.

I wonder if you think that the most important job you have today is to ‘break’ this news to this family. I wonder if you understand what your most important job really is. You see, the way you tell these parents that their child is Autistic is likely to colour these parents’ perception of their child for years to come. And by extension, the way you tell these parents that their child is Autistic will likely predetermine how that child experiences their Autism for years to come. That responsibility weighs on your shoulders: your language now, your words, will in large part determine whether this child flourishes and has a happy childhood that is filled with love and acceptance and respect. Or not.

You see, although you diagnose autism using the DSM 5 or the ICD-11 which frames Autism through deficits, and although your view of Autism is (by the very definition of your profession) medicalised and pathologised, you are now faced with a choice… On the one hand, you can choose to draw on your extensive medical knowledge to talk to these parents. You can choose to explicate why their child has a ‘disorder’ by listing all the developmental markers the child hasn’t met, all the ways they don’t meet arbitrary standards of ‘normal’, all the things they can’t do, all the things that make them different, and challenging, and limited, and ultimately less.

You won’t use those words, of course – you’re more sensitive than that – but you will tell these parents about their child’s social-communication difficulties, you will reference their ‘restricted interests’, you will list their behavioural challenges. You might be tempted to conjecture what this child will or won’t achieve, what potential will remain unfulfilled. Ultimately, you might think it your role to offer these parents a taste of the ‘reality’ that will become their lives because of their child’s Autism. And no doubt, you will offer these parents advice on therapies and interventions and next steps to encourage their child towards the goal of ‘typically developing’. No doubt, you’ll tell these parents about the promise of Early Childhood Intervention, about a ‘window of opportunity’ that will close if they don’t ‘act’ immediately, about which therapies and interventions are evidence-based to reduce Autism symptomology.

And if you do that, you will very probably condemn that family – that child – to months and years, possibly even decades, of denial, rejection, exclusion, isolation, stigmatisation, and pain. Because those parents will take your medical expertise and apply its implications to their child. They will look at their child’s Autism as something wrong, something broken, something needing to be fixed and cured. They will be haunted by what might have caused their child’s Autism, what they could have done differently, what they did wrong to deserve such a fate. They will, in all likelihood, sacrifice their child’s childhood at the altar of hours and hours of therapy which will, these parents hope, make their child less Autistic, less different, less noticeably Other.

And their child? Well, they will hear you. They might not understand every word you say, but they will understand your tone. They will perceive that you are ‘breaking bad news’, they will hear you say that you are sorry. They will read in every way that you communicate, that what is discussed here and now – this thing called Autism that seems to scare their parents so much, this thing called Autism that you seem to find so regrettable and such an unhappy circumstance, this thing called Autism that they have – is wrong, sick, shocking, awful. And, remembering that many Autistics are hyperempathetic, this child will receive all of your nonverbal messages, and they will understand that it is something in them that makes their parents weep, prompts their father to scoop them up in his arms, hoping to protect them from themselves.

And, long after your appointment, that feeling will remain. And it will be reinforced as this child internalises their parents’ perceptions. They will interpret their parents’ attempts to make them less Autistic as a sign that their Autism is wrong, broken, needing fixing and curing. And that child will, inextricably over time, come to hate their Autism, and (because they understand in a way that you and their parents do not seem to) since their Autism is intrinsic to who they are, they will come to hate themselves. They will loath that part of themselves, and learn to mask it, at great cost to their mental health and self-acceptance. They might become depressed. And you will blame their Autism. They might become aggressive. And you will blame their Autism. They might develop crippling anxiety. And you will blame their Autism. You will blame their Autism without once thinking that just perhaps the view of Autism that you gave to that child’s parents at this vital moment right now might have had such long-lasting ramifications, and that you might be at least in part to blame, and not Autism at all.

But. There is another hand. Because, on the other hand, you can offer those parents a different insight that comes with acceptance, respect, joy and hope.

What if, instead of ‘diagnosing’ this child with Autism Spectrum Disorder, you ‘identify’ this child as Autistic, so that they don’t automatically see their Autism as an illness or sickness that needs treating, and so that they understand their Autism is an integral part of their identity?

What if, instead of listing this child’s deficits, you talk about their strengths first and foremost, so that they understand that they have gifts to offer that are valued and valuable?

What if, instead of pathologising this child’s restricted interests, you use positive language like ‘passions’, so that they don’t perceive of their wonderful pastimes as anything other than fulfilling?

What if, instead of telling those parents that they should prepare themselves for the possibility that their child might never say the words, ‘I love you’, you tell them that their child absolutely loves them and will communicate that love, every day, even if it’s not with words?

What if, instead of worrying that this child will never speak, you instead tell their parents that there are many, tremendous ways of communicating non-traditionally, that will allow their child to express themselves throughout their lives?

What if, instead of urging haste (and possibly inadvertently inciting panic) with talk of an early intervention window, you encourage these parents to pause, to process, to reflect? What if you persuade them to take the time to assess which therapies would really benefit their child, right now, so that their child has the chance to be a child, and not spend their childhood on a conveyor belt of therapy in a normalising factory?

I’m not saying ignore the challenges… these parents have come to you because there are challenges, so to ignore them would be disingenuous. I’m not saying don’t recommend any interventions… some will be vital to help this child feel happy and safe in a predominantly neurotypical world. But – just for today, when first impressions count so much – why not introduce this family to Autism in a way that is respectful, and positive, and accepting?

Just think… what if, instead of instilling a fear of Autism, you give these parents a lasting gift, the gift of the knowledge that to love this child – this wonderful, unique child – is to learn to love their Autism?

What if, as part of this appointment, you introduce these parents to the idea of Neurodiversity, so that they understand their child’s Autism from this first moment as a natural biological variance like any other diversity?

What if, as part of this appointment, you invite these parents to listen to adult Autistic voices so that they can appreciate what amazing, awesome lives so many Autistics live, if they are allowed to live as authentically Autistic? What if the resources list you give to these parents is filled with such uplifting, hopeful Autistic voices, so that these parents experience optimism because of their child’s Autism, not desolation because of it?

Because if you make that choice, the choice to inspire and enrich and elevate, you are instrumental in making this child’s and this family’s life unquestionably and immeasurably better, happier, more satisfying and enjoyable. Because if you choose Neurodiversity, you offer the hope of inclusion, community, and identity. Because if you choose to focus on strengths right now, you choose to set this child up for the success they deserve, you set them up to flourish.

So… The choice is yours. The responsibility is yours. Here. Now. With these parents and this child. And as they reluctantly turn their eyes to you to receive the information you are primed to give them, as they look to you for knowledge and guidance and wisdom and support, I ask you: how will you give it?

Autistic Pride Day: Celebrating My Autism

When I was a little girl, my family was caught in a cyclone. It wasn’t a severe cyclone, but I remember walking up a concrete ramp towards the local high school that was the evacuation centre, and the wind being so strong that it took all my Dad’s strength to keep me from being blown off and away. I remember the feeling of being buffeted and battered by the wind, of having to put my head and shoulders down and battle my way through that gale that pushed me back and up and off at every step.

I always felt that that cyclone was a good analogy for my life.

I wasn’t identified as Autistic until I was an adult. But in my analogy, I always thought that my Autism (or before my identification as Autistic, my difference, my social clumsiness, my awkward manner, my anxiety) was my cyclone, the force I was battling against, that made my life difficult and grueling and tumultuous and blew me off course.

I was wrong.

Now, looking back, I know that Autism wasn’t my cyclone at all. No. Actually, the cyclone was the isolation, and the loneliness, and the peers who couldn’t see past the difference to see me. The cyclone was the world that wasn’t – isn’t – geared to accept me as I am. Those are things that really pummeled and battered me, and kept me anxious and alone.

In reality, my Autism was my protector, my guardian, my shield. It was the part of me that filled me with joy, that satisfied me and made me content, that sheltered me. Autism was my friend, my companion, a bubble within which I could just be. Without censure. Without judgement.

When I was in high school, when I felt the brunt of my peers’ prejudice, my Autism gifted me a special friend in the form of my Maths teacher, who shared my passion for King John and his two Isabella wives. My teacher and I debated this much maligned King for many contented hours. Now, I imagine most 14 year-old girls would feel a certain peer pressure to eschew befriending an adult (especially their Maths teacher), but my Autism cared little for ageism or social expectation: it craved connectedness, shared interests, and quality conversation. That is the freedom of my Autism.

For most of my teenage years, I read between 10 and 20 novels weekly. My parents would take me to the local library every Saturday morning, and I would return my books from the previous week and borrow another pile that I would read into the wee hours of every morning. I loved – still love – books. With each book I read, I made new friends, and the characters would give me the companionship and acceptance I so desired. I suppose that might sound sad, but books allowed me to travel to the most wonderful, remote and fantastic places; I have travelled through time and space and I still count my fictional friends as some of my closest. My Autism gave me the capacity to imagine with an intensity and vividness that meant I could expand my reality beyond the mundane. That is the extraordinary capacity of my Autism.

For all of my life I have adored movement. I was fortunate enough to see Sylvie Guillem and Rudolf Nureyev dance in Giselle when I was a young girl, and I will never forget the visceral joy it gave me to see the complex grace of their motions, their symbiotic bond to the music. I felt their dancing within myself, with far more complexity and totality than simply watching implies. And now when I hear music – whether it’s Prokofiev’s Romeo and Juliet or Simon and Garfunkel or Wolfmother – I experience the melody and the emotion in my whole body. It is a delight that is difficult to describe, but each sinew, each ligament, muscle, and organ vibrates with the satisfaction of immersion. I experience an elation, an exultation, an ecstasy that is so much more than simply listening to music. That is the joy of my Autism.

I experience the world in technicolour. I notice each detail. Every smell. Each petal unfolding, each cloud forming, the subtlety of colour, the nuance of seasons. I see the texture, I smell the emotion. I don’t need to remind myself to stop and smell the roses, because my brain is so attuned not just to their perfume, but to admire the velvety beauty of their petals, the delicate thinning of the petals, the magnificent patterning, the blending of colour that defies description. Every time. Sometimes that intensity is overwhelming and challenging, but it is also wonderful. That is the beauty of my Autism.

I think my Autism is beautiful.

So often in this world, we judge people on their contributions – what they can offer, what skills they can supply to society – and we equate value with the promise of what can be given, what might be done. Often Autistics are maligned because our contributions are not conventional. When we are lauded it is often because we have some splinter skill that is desirable and has social currency. But I don’t judge myself – or my Autism – by such limited standards. My Autism isn’t valuable or beautiful because it will mean I contribute to society, conventionally or otherwise. It is not beautiful because I have savant skills that make me extraordinary. I am certainly not the next Albert Einstein or Daryl Hannah or Stephen Wiltshire. It is beautiful because it is. Just that simply. Because, for me, my Autism is my rainbow, my sunshine, suffusing me with colour and showing me the beauty in the world. It is a celebration.

And so, on June 18th, I think it only fitting to celebrate my Autism. Because it deserves it. Happy Autistic Pride Day.