How to Be an Authentic Ally to the Autistic Community
TW: depression, bullying
Almost as soon as I was born, my mother could see there was something different about me. I was doing all the usual toddler things – learning to walk, learning to talk – but grasping them earlier than expected. I quickly gained a large vocabulary and spoke almost like an adult by the time I started primary school. I could memorise whole VHS tapes’ worth of films after a handful of viewings and recite them verbatim, starting again from scratch if I was interrupted (much to my family’s chagrin!).
However, it was clear that my sensory reality was causing me great distress. My mother tells me stories of how she’d have to detangle my hair in the bath while I screamed and roared because I couldn’t stand the pain of brushing my hair, an agonising process that felt like each individual hair was being plucked from my scalp. The sound of passing traffic on the street was like exploding grenades to me and my mother couldn’t take me into shops as the low hum of the freezers, almost imperceptible to everyone else, would send me into what she thought was a “tantrum” at the time, but would later find out was a reaction to sensory overload.
I was lucky enough to have a mother who wanted to understand me rather than change me, which led to my being diagnosed with Asperger Syndrome, a variant of autism, at the age of six. This was my gateway to resource classes and social skills training from ages eight to twelve, which were incredibly beneficial to me. I started to learn what was intuitive to others, from understanding figures of speech to knowing when it’s appropriate to speak in a conversation. I loved my schoolwork, was a straight-A student and spent my lunchtimes hiding on the floor of the school’s tiny library, reading voraciously. I never made any friends and struggled to connect with my peers, but I tended to prefer the company of adults at that age and saw my teachers, my mother and visitors to the house as my friends instead.
Flash forward six years: I was sitting idle at home, a school dropout. I had barely left the house in the past year, weighed 200 lbs and was chronically depressed.
Academic anxiety wasn’t the issue – I was still getting straight-As and knew I had it in me to do a good Leaving Cert. However, secondary school had been a hellish battleground for me and after five and a half years, I had finally been worn down. I couldn’t take another day in such a profoundly toxic environment, where my difficulties navigating social nuance left me on the receiving end of persistently unkind behaviour. Where I’d spend break-times locked into a toilet cubicle, the only safe space for me to eat my lunch unmolested. Where I’d nervously stammer my way through presentations as my classmates echoed my every word to each other in mocking tones. Where teachers would join in with my classmates’ laughter as I answered rhetorical questions or took sarcastic instructions literally, realising my blunder just a millisecond too late – “for such a smart girl, you can be so stupid sometimes!” Where I came home to find myself tagged in the latest instalment of my classmates’ social media thread about me, chronicling everything they found to be “wrong” with me.
And why? Because I eschewed the sensory nightmare that is skin-tight jeans with senseless rips in them and wore mismatched but comfortably baggy attire to non-uniform days? Because I tried but could not convince myself to enjoy the same kind of music they did? Because I sometimes used big words, despite my best efforts not to sound pretentious? Because I couldn’t stand the noisy environments in which they most liked to socialise? Or all of the above – that is, simply because I’m different?
I didn’t know. I didn’t know if I’d ever do a Leaving Cert or go to college. I didn’t know if I could be among people again with my sense of fortitude as compromised as it was. Most of all, I had no idea how the heck I could come back from this. All I did know was that I couldn’t keep existing in an environment that was so hostile to difference.
And so I didn’t. After taking a year out, I found another school – it was a long commute, but was worth every mile for the acceptance, kindness and unconditional support I found there. With that, my mental strength improved immeasurably, which encouraged me to put my mind to returning to good physical health too. I dipped (or more accurately, plunged!) into my savings to buy myself a treadmill and lost just over four stone. Most proudly of all, I did get my Leaving Cert in the end and became the first in my family to go to college, graduating last year with First Class Honours.
Since then, I have spoken at a handful of schools, universities and teacher training seminars in the hopes that telling my story might help ensure that unkindness, exclusion and isolation don’t become an inevitability of future autistic children’s lives. The feedback I sometimes get after these talks is that I’m an “inspiration” and while I appreciate the sincerity of the sentiment behind it, this doesn’t sit well with me. To be called an inspiration is to acknowledge that the identity to which I belong isn’t generally expected to succeed, and despite how hard it was made for me, I bucked the trend. I don’t buy that. There is a myriad of potential within the autistic community that goes unrealised, either due to a lack of resources or a lack of nurturing environments. However, if we normalised the provision of these missing links, I can assure you that “inspiration” would become the rule, not the exception.
Yes, I and several other autistic people advocate for ourselves and fight hard, sometimes at great personal cost, to succeed in a world whose settings are rigged by default to suit the many and not the few. But why must we fight when these settings aren’t static and can be so easily adjusted? The onus is on all of us, autistic or otherwise, to make this world a more equitable place for all minorities, whether by race, gender, sexuality or ability, and hero narratives aren’t conducive to achieving this.
So while it’s a wonderful and very flattering compliment, I’m afraid I’m not an inspiration. I’m human, and just like everyone else who identifies as autistic, ask for nothing more than permission to exist as such.
Want to help make the world a better place for autistic people, but not quite sure where to even begin? Here are my top three tips to help you be the best possible ally to the autistic community:
1. Actively listen to autistic people.
It sounds obvious, but so many well-intentioned (and occasionally, not so well-intentioned) people jump to take actions on our behalf without actually asking us directly what we want, instead assuming our needs from a neurotypical (non-autistic) standpoint. A current example of this is the singer Sia’s extraordinarily dehumanising film ‘Music’: despite the absence of any autistic input, a scene condoning the use of involuntary physical restraint during a meltdown and general outcry among the autistic community as to its harmful messaging, critics have blindly lauded it and it has received two Golden Globe nominations.
This is the latest episode in a long-running history of autistic adults being conceived of as children in grown-ups’ bodies and thus being shut out of conversations which directly impact their lives and how wider society perceives them. While the narrative is certainly changing for the better, this counter-intuitive marginalisation persists – indeed, the fact that #NothingAboutUsWithoutUs was trending on Twitter as recently as three months ago verifies that autistic people still have to fight to be heard. Neurotypicals are crucial players in facilitating a space where autistic people can become visible where it matters most and expect their words to be heeded.
2. Stand with us for change, not for us.
As we lobby and organise for change, amplify our voices without drowning them out. We want nothing more than to be active stakeholders in the decisions which affect us and be the chief informants as to the journey this evolution takes. However, the sad reality is that we simply can’t get it all done on our own. There are simply too few of us. Accounting for a marginal 1% of the overall population, we are at an automatic disadvantage in terms of the pressure we can place on policymakers. Indeed, for even the most seemingly simple things to change, one heck of a push is needed from all of society, beyond those it impacts. But to make everyone’s efforts truly count, it’s crucial that we are all aligned and pushing for the same thing.
Far too much energy is misspent agonising over issues that were never a big deal to us in the first place. One such example has been the baffling movement, driven almost completely by non-autistic people, to start referring to us as “people with autism” rather than “autistic people”. Proponents of this trivial shift in semantics felt it was more respectful to separate the person from their disability, despite there being no demand for this whatsoever from within the autistic community. In fact, if autistic people had been consulted on this, it would have been found that the overwhelming majority actually prefer “autistic” and if anything, resent that they have been subjected to an unsolicited re-labelling without having any say in it. Meanwhile, more than 85% of the autistic community are believed to be unemployed or underemployed and a whopping 42% of applications for Disability Allowance were rejected in Ireland in 2018 due to increasingly stringent eligibility criteria.
These are just a few examples of the very real issues that the autistic and wider disabled community face today and too often don’t receive the concern they deserve. The autistic and neurotypical communities working in tandem towards common goals rather than acting on assumptions of each other’s needs is a far more conducive approach to meaningful progress. So, my advice? Listen, understand, align and shout – in that order.
3. Be compassionate.
Most kinds of change are incremental, and this can be frustrating as it takes time before we see a tangible impact. But good news: the single most effective thing you can do to be a great ally to the autistic community is immediately actionable, and that is quite simply to be kind to everyone, regardless of how strange you may find them. Include them. Say what you mean and mean what you say. Try not to tease, even if jokingly. Be mindful of sensory and communication differences. Indulge their wacky interests. Let them know they belong.
Autistic adults without comorbid learning disabilities are 9 times more likely to die by suicide than the general population and autistic people’s average life expectancy stands at approximately 36, a staggering 46 years below the most recent estimate for Ireland’s general population. Furthermore, a UK study by the National Autistic Society found that autistic people are 4 times more likely to have an enduring sense of loneliness while almost 80% feel socially isolated. Autistic people often refrain from social interactions not out of lack of interest, but rather out of fear that they’ll inadvertently make a social faux pas or make others uncomfortable by coming across as different. Right up until around 40 years ago, our neurological ancestors were thrown into institutions simply for being the way they were, a sobering fact of which many autistic people are painfully aware and which makes that lingering apprehension of being our whole selves around others all the more understandable.
So those of you who have an autistic person in your life, diagnosed or undiagnosed, please know: each time you don’t flush with embarrassment as we get carried away and speak too loudly; each time you don’t roll your eyes after being asked to repeat yourself for the third time; each time you wait patiently for us to get the joke or listen intently while we talk at length about our passions, while you silently marvel at how we could take joy from such mundane topics – that, trivial as it may seem, is everything. Thank you for allowing us to be ourselves and thereby helping us find the courage to keep doing so unapologetically. Small actions, I have always found, go the longest way and as we watch society shapeshift before our eyes into something more tolerant, more all-embracing, more celebratory of difference, I can’t help but be optimistic that this trajectory will continue. Let’s make it so.