Wired Our Own Way

Introduction

by Niamh Garvey

To be open and honest about being autistic requires a large dollop of courage. When I tell people that I am autistic, it can feel like an X-ray scanner is turned upon me, while the person searches for signs of autism in me - do I 'look' autistic, do I speak differently, do I move my body in repetitive ways, and do I match the label of 'autism' at all? Many people do not understand what being autistic actually means, and subconsciously carry outdated assumptions about what an autistic person should or shouldn't look like, or what they can or cannot do. But autism does not have a 'look', just as non-autistic people do not all look the same. This anthology of essays shows how radically different the lived experiences of autism can be.

When writing an essay, it is up to the writer to disclose what they want the reader to know about themselves. Each writer began with the same empty page, free to express themselves without being stereotyped according to their ability to speak or not speak, their cultural background, skin colour, sexuality and whether or not they have visibly obvious autistic traits such as poor eye contact or repetitive body movements. In turn, the reader is freed from the clutter of assumptions and can approach each essay with unveiled eyes. The reader and the autistic writer therefore begin on equal footing, which can be quite the opposite of the lived experience of many autistic people when it comes to first impressions.

The form of the essay also frees people who don't fit into stereotypical presentations of autism, many of whom have had their autism repeatedly disbelieved. In particular, autistic women can experience scepticism when we tell someone that we are autistic, which is shown in the essay by Jennifer Poyntz, whose doctor told her, 'You just don't really fit the bill, if you know what I mean.'

Part of the reason that people often don't believe those of us who disclose our autism is that public perception has yet to catch on that being autistic is not something to be afraid of, nor ashamed of. As Eric Crowley writes, 'I think people still see us as a hindrance, or something to look after.' When people think that to be autistic is to be something 'less', it contributes to stigmatisation that has real-life consequences, as Priyangee Guha explains: 'Talking about being autistic is strongly detrimental to me in inconceivable ways. I may be refused employment, or medical treatment, or legal rights, or dates, or friendships.'

All writers were given the choice of writing anonymously, using a pen name, or using their actual name. This might seem like an unusual thing to offer writers in an anthology, but it felt like a necessary step to take as editor; an offer of a shield against the vulnerable position we are placed in when we speak about our autism.

One in twenty-seven school children in Ireland are now formally diagnosed as autistic (no doubt with many more unidentified or awaiting assessment), which sensationalist media sometimes labels as an epidemic, but I celebrate as a sign of increased understanding and thus identification of autism. When I was a child in the eighties and nineties, it was rare to get a diagnosis of autism. Even though my behaviours and language development necessitated me being seen by a developmental paediatrician, a speech and language therapist and a psychologist, no one ever suggested that I was autistic. On the other hand, many people who were diagnosed as children in the eighties and nineties experienced 'treatments', therapies and methods of education that have now been recognised as cruel and traumatising - the focus lay on extinguishing autistic behaviour and trying to make autistic children act and appear more 'normal'.

The label of 'autism' is a relatively new diagnosis, having only become an official stand-alone diagnosis in the 1980s, despite autism being an age-old neurotype. There's copious evidence of autism throughout history, right back to many of the Irish children accused of being changelings. Throughout the early to mid-1900s, autistic people who did get a diagnosis were labelled with either schizophrenia or mental retardation. In the 1960s, the label of 'autism' came into play, but it was classified as a form of schizophrenia. In her essay 'Autistic at Seventy' Jane Cadman explains that 'Autism did not exist when I was a child, unless it was extreme male autism.'

During this time, Irish autistic people who had higher support needs tended to be institutionalised, which I believe is one of the reasons I so often hear people say, 'Sure there were no autistic people back in my day.' Those who were not hidden away in institutions tended to collect alternative labels, as shown in multiple essays, such as Liam Coulson recounting being called a 'retard', 'thick' and 'strange', and Colm Brady being called 'weird'.

Nowadays, many adults in Ireland are finally discovering their real label of 'autism' and finding validation in that. When I was getting assessed for autism at the age of thirty-four, many people asked me why I would seek out being labelled as 'autistic'. Their confusion was laced with the undertone that to be 'autistic' is to be something undesirable, and that if I could 'pass' without the label, then I should. I explained that if my brain was wired differently, then the label of 'autism' would not change my wiring, but at least I would understand how my mind worked, and what actions I could take to make life easier. Chandrika Narayanan-Mohan explains that 'with more information about how my brain works, the anxieties and barriers have started to fall away'.

Contrary to an increasingly popular accusation in the media, getting diagnosed as autistic is not a 'lifestyle choice'; it is simply a matter of clarifying one's identity. Eighteen-year-old writer Róisín Riley succinctly sums this up: 'For just one person to recognise who I was, to suggest that I was the autistic person that I didn't even know I was, it changed everything . To understand that I don't need to be changed, I need to be recognised.'

Before people learn that they are autistic, they often feel like a flawed human being, as they don't understand their challenges and differences. Aisling Walsh writes that before her diagnosis, 'I spent most of my adult life believing I was broken.' Autism identification allows people to become comfortable with themselves and their differences, as Nuala O'Connor explains in her essay: 'In the last few years (since autism diagnosis) - after a lifetime of befuddlement - I've found I belong right here in this body, and in this mind, uncomfortable and challenging as that can be.'

Many of us autistic people learn to mask our differences from a young age, moulding ourselves on how other people behave, as Caoimhe O'Gorman experienced: 'My friends and my teachers never saw me melt down; something I'd purposely hidden because I was ashamed. I didn't know they were autistic meltdowns for a long time and instead thought I was just too sensitive.'

This masking survival tactic is one of many reasons that has been shown in research to contribute to the significantly higher rates of depression and anxiety amongst autistic people. A number of the essays submitted showed a common experience of adults not finding out they were autistic until they accessed mental health services (often in crisis), as mentioned in the essays by Stuart Neilson and Róisín Riley. On the other hand, many writers flagged their suspicions that they were autistic with health professionals, including psychiatrists, only to be told they were not autistic and refused access to an autism assessment. I couldn't include all the essays that showed this type of gaslighting as there were too many, but one I did include is that by Jane Cadman, who missed out on diagnosis until she was sixty-nine.

A frequent route to adult autism identification is when a child is diagnosed as autistic, and the parent realises that they have multiple autistic traits themselves, which is what happened for Irish professional footballer James McClean.

Media representation is another increasingly common route to people realising they are autistic, such as author Nuala O'Connor's epiphany when listening to a radio interview of a late-diagnosed autistic woman. One high-profile woman whose media presence has helped many Irish people recognise autism in themselves is Stefanie Preissner, who speaks openly about her autism through multiple media and social media platforms. I was delighted she agreed to let me include one of her essays on her own late diagnosis, which was previously published in the Irish Independent.

Autistic people speaking up about their autism is having a diagnosis-domino affect around the world. Technology is playing a pivotal role in this, both through empowering people to communicate and by connecting autistic people with each other.

Fiacre Ryan's essay shows how his inability to speak meant that he had no method with which to communicate until he began to use AAC (augmentative and assistive technology) aged eleven,...