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.

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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.