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.

Exploring Autistic Space

When I first read Steve Silberman’s Neurotribes, one of the many moments that stayed with me was his description of Autistics coming together with other Autistics, the liberation and joy that is finding your tribe. He describes – as do many others – that moment when Autistics come together, without judgement, without censure, without fear, free to be themselves, tangibly and profoundly. From the moment I have been reading about Autistic Space (spaces by, with and for Autistics), I have been longing for the day that I might experience them and find my tribe.

I can’t speak for anyone else’s experience, but as an Autistic woman in her thirties I have spent my whole life on the outside looking in, not belonging, not comfortable, not at ease. It’s not that I don’t want social connection. Actually, the opposite is true – I crave it. But that kind of connection has thus far eluded me.

I don’t assume that when I gather with other people, I will experience any kind of vital, basic social bond. I don’t assume that I’ll naturally experience the sort of social relationship that unites and connects me to others. Like for most people, I’m sure, the sense of me being an integral part of a greater whole is accentuated and intensified when I am among people who share something in common with myself. But it’s never complete.

I wonder how many people enter a room of other people with an expectation of acceptance and companionship. Because I don’t. I enter a room of other people and experience nausea and anxiety and an expectation of exclusion and awkward loneliness. Or I enter a room wearing a mask of socially-acceptable competence and I function, but that woman is not me, she is a façade. So, if I felt them, “acceptance” and “companionship” never really felt like mine to claim.

I want that. I want to walk into a room and have the experiences behind me to support an informed assumption that people will like me, and that I will be a valued addition to that social group. I want to know what it’s like to muster the courage finally to say something, and for that something to be respected and appreciated. I want to know what it’s like not to have to muster the courage to say something in the first place. I want to be me, really me, and feel that those around me aren’t just acquiescing to my quirks, but actually embrace them totally.

It’s not that I don’t have friends. I do. I have a few absolutely wonderful, dedicated and generally awesome friends. They’re a small group, but gosh I have quality over quantity. What I don’t have, however, is a people, a tribe. I don’t have a group. And I want one.

Last week I got one. I had the opportunity to join an Autistic Space with thirteen other Autistics, as well as a number of Autistic mentors, supporters and organisers.

Walking into Autistic Space for the first time was absolutely terrifying. I had never fit into any social group ever. The longing for this to be my place, my tribe, my moment to be me, to feel acceptance, to know connection, was so deep, so nauseating, so overwhelming in its intensity, that I could hardly bring myself to enter the room. What if, like every other time in my life, I experienced rejection here too? What if all the hope that I’d built up, all that optimism, was not fulfilled? How would my heart survive if here, too, everything I’d dreamt of, hoped for, was dashed and disappointed? If I didn’t belong here, surely I didn’t belong anywhere. If these weren’t my people, then I was destined to live my life without that connection.

I’m not going to exaggerate here. I didn’t walk into Autistic Space to applause (Autistic style or otherwise). No one greeted me as the-long-lost-person-they’d-been-waiting-to-meet-all-their-life. No rousing welcome was heard. But then someone handed me an adult colouring-in book, and some putty, and a groovy new fidget toy I’ve never encountered before, and it struck me that I was welcome. Not a prodigious, gregarious neurotypical style welcome, but a warmer, sincerer welcome than I’d ever encountered elsewhere in a quiet, Autistic, accepting way.

When I first walked into Autistic Space I was like a tightly wound flower bud, curled and folded in on myself to protect myself from what I have learnt is inevitable pain, hurt and disappointment in social environments. But in Autistic Space every conversation, every shared experience and memory, every gesture of acceptance, every respectful acknowledgement of my needs, encouraged me to unfurl my petals.

When my stim-putty was appreciated by many of the other participants, it felt like sunshine on my petals, coaxing me to open, to blossom and bloom and be beautiful. When people laughed at my puns and my quirky humour, it was with me, not at me. When I gave feedback or suggested feed-forward, people listened and truly heard my words. Heard and appreciated them and thought that they were insightful and valuable.

All the defenses I have erected over years to shield myself from the hurt of loneliness began to disappear, as each of my petals – my stims, my passions, my intellect, my puns, my songs, my laughter, my movements, my humour, my creativity, my analysis – unfurled a little more, to reveal the real me. It wasn’t immediate, but slowly I was coaxed by my Autistic peers to emerge as something infinitely more beautiful than I was before when I was the mere promise of a flower yet to thrive. Autistic Space was my sunshine, my nutrient, the food I needed to realise who I am.

I spent four days in Autistic space. I coloured my way through the majority of that time. I flicked and flapped. I stimmed with putty. I clapped silently. I acknowledged my sensory needs. I made friends. Lots of real, genuine friends, friends with whom I will continue to keep in contact, though we are geographically separated. I shared myself, and I realised that in that sharing, I became more.

Austistic Space is a gift. It’s a gift I’d like to give to other Autistics, and to my Autistic children. It was a glorious, peaceful celebration of potential. And I will be forever grateful for that gift, even as my brain grinds back into the gear of performing in a non-Autistic world.

* NB. It occurs to me that the image attached to this blog should rightly be more flower, less fish. But this image is one that I coloured during my time in Autistic Space, and it sparkles like I do when I’m thinking about those few precious days.

Minecraft Matters

A few months ago, one my youngest son’s therapists and I were discussing the pre-planning I had done for his NDIS funding. As some of you will know, the NDIS requires you to recount, in detail, the rhythm and flow of your child’s daily life and activities. My little guy is happiest just being in the safe, predictable environment of home, where I home-school him and his two older autistic brothers, and he prefers playing with children much older than his age-peers. Our family narrative reflects this reality.

As the therapist glanced through my day-to-day recount she looked at me and asked, gently but with clear censure, ‘so just how much screen does he have each day?’. Argh. I cringed internally with guilt and shame, but squared my shoulders to justify his iPad usage… only to shy away from that confrontation to reply vaguely, ‘um, not that much’. She gave me that look – you know the one that’s part doubtful, part disapproving judgement, part reminder that your failures are seen and noted – and dropped the matter. But even months later, it’s still bothering me: the question itself, and my own lacklustre, totally inadequate, evasive response.

We all know what the question behind her question was. Or, more properly, what the intent behind the question was. It was a reprimand, a reminder, that by allowing my son so much iPad I was somehow damaging him, enabling his social isolation, coddling him, exacerbating his autism. I’ve heard it all before, and it’s rhetoric to which we’re exposed often as parents: technology is damaging, it’s isolating, it’s anti-social. And when it comes to technology, I spend my life consumed by paroxysms of guilt: if I take my sons’ iPads (or other miscellaneous gaming devices) away, I know I do my children a disservice; if I give it to them, society shames for me it and my already shaky feelings of self-efficacy as a mother waver even further.

And there’s the rub. I know that I know my children and their needs best. But I can’t help being bullied by external expectations, and social pressures. So, I’ve decided it’s time to rectify that wrong. Now, months later, I’ve finally formulated the answer I wish I’d have delivered to my son’s therapist when the issue arose.

In order to understand the importance technology – specifically Minecraft – has in our house, you need to know more about my youngest boy, Mr Z. Mr Z undermines most assumptions people have about autistic kids, not least because he has the most amazing, complex and vivid imagination. This is a little boy whose internal world is vast and deep and profound.

Mr Z has certain ways of experiencing his imagination which are both visceral and uplifting for him, but he has neither the expressive language nor the fine motor to share his imaginative visions with us, his family. Mr Z is verbal, and generally he has a precocious vocabulary, but the complexity of his internal imagination is so great that he can’t always access the right words to describe what’s inside his head. As he begins to learn that we aren’t inside his head with him, that we can’t automatically see what he sees, he desperately wants to share his internal world with us; he wants to make the internal, external.

But when a child’s words simply don’t suffice, and when they struggle to draw, and they’re too young to type or write (even if they could access the right words), how can that child share – communicate – what they so deeply desire to share? How can they give their family a way of seeing what they see, in their special, awesome, intensely detailed way?

Well, for us, and for Mr Z, the answer is Minecraft: Mr Z recreates his internal worlds in the Minecraft universe so that we can see, we can experience, what he does. Minecraft is Mr Z’s AAC if you like. For most people, Minecraft is a highly motivating ‘sandbox game’, an open-ended virtual world, which encourages building and creation with few game-directed goals and requirements. For Mr Z, it’s a way to augment and complement his current verbal capacity when that capacity isn’t sufficient for him to communicate what he wants to communicate. It alleviates communication frustrations and gives us access to a world that would otherwise be confined to Mr Z’s head.

Minecraft gives Mr Z a way to express himself that is natural and appropriate for him, that he enjoys, and that he can share. How liberating for him, to have a tool that enables him to share and communicate all the amazing ideas he wants to share and communicate! Minecraft, then, is a cornerstone to Mr Z’s interaction with his family; it is an interface between us and Mr Z.

But the benefits of games like Minecraft go beyond Mr Z’s very specific use of it to help him represent and recreate his imaginative workings. The potential of Minecraft, and games like it, is located in its social currency: Minecraft is the second-highest selling computer game of all time, with a monthly player base of 55 million, and although it has special appeal to the autistic community (as witnessed by the player base of autistic servers like Autcraft), it is equally treasured and beloved within mainstream communities.

Now, research tells us that the most successful social encounters for neurodivergent children have their foundations in activities based around shared interests and passions. Scaffolding socialising through shared interests is effective not only in promoting social engagement for our children, but equally in supporting such engagement. Research also shows us that collaborative virtual environments offer unique opportunities for autistic children to engage socially, and to collaborate and communicate with their peers, with fewer risks and challenges than socialising solely face-to-face: these environments facilitate communication, interaction, socialisation, collaboration, and the formation of meaningful relationships. They allow our children to socialise authentically autistically, rather than holding them to ransom with neurotypical norms.

In our house then, many of our play-dates – whether they are with neurodivergent or neurotypical peers – are Minecraft play-dates. Since Minecraft is an environment in which players can join together to play virtually in a unique, shared world, it allows my boys to socialise with their peers in the context of their passions, respectful of their neurology, and without the stresses and challenges of traditional play. Their play on Minecraft is usually collaborative, cooperative, interactive, and prolonged.  And they are hugely competent in it. Within Minecraft, my boys are set up to be socially successful, because they excel at something with universal appeal and popularity in both the neurotypical and neurodivergent populations.

For my boys, as for many others like them, Minecraft actively encourages and supports them to form authentic, respectful peer relationships, grounded in reciprocal passions and shared interests, humour, enthusiasm, appreciation, and playful competition. Virtual environments, such as Minecraft, respect a neurodivergent way of socialising and offer alternative avenues for social expression and communication. For our family, Minecraft has helped the boys foster quality friendships, based in mutual support, trust, humour, reliability and reciprocity, which are then developed and maintained both within and without virtual environments.

It’s interesting… when my boys have play-dates that don’t include a virtual element, when they are forced into a traditional, neurotypical pattern of socialisation (which admittedly I don’t allow often), I can almost guarantee two results. Firstly, the play is parallel and limited; we can manage perhaps fifteen to twenty minutes of side-by-side play that is rarely cooperative and is often frustrated by the nuances and subtleties of neurotypical expectations. Secondly, after the playdate, one (or more likely all) of my boys will be absolutely exhausted and usually on the brink of meltdown. Minecraft (and indeed gaming more generally), on the other hand, provides them with a feeling of social competence (this is something they’re good at, something they excel at, and something they enjoy), as well as social stamina.

So, next time you go to judge someone else’s use of technology, next time you feel a tut-tut emerging because someone proposes a Minecraft play-date, or because you feel that their children have Too Much Screen… Stop, and think of this.

And, next time someone challenges your child’s technology usage – next time you experience that heavy feeling of guilt as some well-meaning aunt or grandparent or friend or professional looks askance at your child absorbed in a virtual world – remind yourself of the importance of this tool, of its potential to boost your child’s social self-esteem, of its communicative benefits. And calm that guilt. It’s OK.

The Importance of Identification

A few weeks ago, a mother asked me if she should tell her autistic son about his autism. Then last night, another parent asked if she should pursue an autism diagnosis for her son after his paediatrician raised concerns about ‘labelling’ him. My response to the latter question seemed to resonate with a number of people, so I decided to expand it into this blog. But when I contemplated exactly what I wanted to say, the two questions seemed intrinsically linked, so I am going to try to tackle them together here.

As an autistic mum of three autistic boys, I ask you to consider the questions — ‘should I pursue an autism diagnosis for my child’ and ‘should I tell my child about their autism diagnosis’ — without prejudice if you can. For many, the word ‘autism’ is burdened by stigma, misunderstanding, and stereotype. But how would you feel if I posed the same questions to you using different examples?

Would you seek a diabetes diagnosis for your diabetic son?

Would you tell your daughter about her cultural heritage?

Of course you would, because you and your child need to understand how to recognise and manage their needs, and because you and your child need to have accurate information about who they are so that their needs are met.

Of course you would, because cultural heritage is a vital component of identity, of defining and understanding who we are.

Of course you would, because the ‘label’ of ‘diabetic’, or a recognition of cultural heritage, helps to define your child’s experiences, their identity, and their needs. It offers them, and those around them, understanding into what they need to remain healthy and safe and happy.

Of course you would, because you understand that the ‘label’ doesn’t confine who they are: it isn’t the totality of their experience. Just as the label ‘parent’ helps to define you, it does not confine you to being only a parent, the label ‘diabetic’ or ‘culturally diverse’ defines an important aspect of your child’s life without confining them to only that label.

And of course you would pursue a diagnosis if your child had unmet needs arising from unidentified diabetes. Of course you would tell your child about that diagnosis because their health and well-being is at risk if you did not.

I’m not suggesting there’s a direct parallel between autism and cultural heritage or diabetes. The analogies are far from perfect. For one thing: unlike diabetes, autism is not a disease. It is, however, not unlike cultural identity: both are necessary and critical elements in embracing our authentic identities, and both are genetically inherited. But the point is not the exact analogy anyway, it’s more to bring our collective attention to the reality that so many of us approach autism with our own stigmas and prejudices. We would never dream of abandoning a diagnosis or withholding it — or, indeed, withholding information vital to understanding identity — if less stigmatized ‘labels’ were in play.

But actually, even the diabetes analogy is more fitting than you might think. Unrecognised or unidentified or unacknowledged autism may not be immediately life-threatening, but it does have a profoundly detrimental effect on well-being, and research shows that a lack of acceptance of an autism diagnosis leads to increased risk of depression. Consider this: Autistic children are around 30 times more likely to consider suicide than their typically developing peers, and lack of acceptance – feeling different, feeling isolated, feeling alone, feeling broken and wrong – is a huge factor in that statistic.

So, actually, we are talking about the health of our children. We’re talking about their happiness, their ability to be themselves, to be invited to be accepted as they are, in all their unique and wonderful glory. We’re talking about their potential to experience the sense of well-being that is a basic human right.

I don’t raise the suicide spectre to scare you, although honestly, those figures petrify me. I’m giving you impetus. I’m giving you the why… why it is so important to identify and acknowledge your child’s autism if such an identification is warranted.

If your child is autistic, then they are autistic. Whether you ‘label’ them or not, whether you actively seek to have them identified or not, doesn’t change whether they are autistic or not.

Your child was either born autistic — or not. And the identification process won’t make your child autistic if they were not born so.

Not ‘labeling’ your child won’t mean they aren’t autistic, it won’t make them any less autistic, it won’t neutralise or cancel out their autism. It simply doesn’t work like that.

So, the question is simply whether the ‘label’ is helpful or not. Or, preferably, if ‘identification’ (which is more value-neutral terminology) is helpful or not.

I would argue very strongly that it is.

Your child (and you as their parent), have a right to accurate, quality information that will allow you and your child to understand their needs and to advocate for those needs to be met. How can you support your child, and how can your child learn to self-advocate, if you – and your child — don’t know fully, holistically, profoundly, who they are? How can you and your child feel inclusion and acceptance if you deny them (and yourself) access to the community who share their neurocognitive processing?

Self-knowledge is the cornerstone of well-being, resilience, and self-determination, but you can’t have self-knowledge if you’re denied access to a part of who you are. How tragic, to deny a child their identity from a place of fear, with the vain hope that by not acknowledging, by not naming, by not recognising a fundamental part of that child – a significant part that makes them who they are – that that part might disappear or change or wither away.

If they don’t already, your child very soon will understand that they are different than their peers: respect that knowledge, embrace it, give them complete access to their identity: it is theirs after all. And autism is integral to who we are, it is fundamental to our identity… there is simply so much potential for damage in denying anyone so intrinsic a part of their identity.

But, no doubt some of you will protest that even if you don’t approach the word ‘autism’ with prejudice and stigma, that prejudice and stigma nevertheless exists. Labelling your child, you may argue, risks exposing them to a world that shuns and slurs autism as a tragedy, that misunderstands autism and excludes autistics. By giving your child the autism label, you may worry that you set them up for failure in a world that neglects them, ostracises them, refuses to accept and respect them.

That is true, to some extent. But as parents of autistic children, as the people charged with changing the world for our children, as the people who should love our children as they are and not as we imagined or expected them to be, it is simply not good enough to be passive. As parents of autistic children it is our mission – our raison d’ȇtre – to begin the social movement for change, or (to use a hackneyed phrase) to be the change we want to see. If we tacitly participate in the stigma, if we perpetuate it, if we ignore it and don’t attempt to challenge it, then we have indeed set our children up to fail.