I have created this space to indulge my love of essay writing and to tell the story of my 'autism journey'. It is a story of confusion, trauma, shame, and denial, but it is also a story of hope, self-discovery, and liberation. I have spent most of my life despairing and anxious, wondering what is 'wrong' with me. Autism has answered provided the answer to that question: nothing.
I am writing this introductory post in my favourite coffee shop. As I sit down with my laptop and a cappuccino (uncompromisingly a morning drink), I grip the sides of the table with both hands, grounding myself, and recovering from the ordeal of entering the shop and placing an order. Despite this, I like it here. During the week it is generally quiet and the barista attempts no eye contact and offers no small talk. The predictable exchange never goes beyond: "A cappuccino, please." "Certainly." I sit at a table at the far end of the mezzanine, overlooking the bar. On the few occasions this seat has not been available, I have drunk my cappuccino at a table downstairs, quickly and uncomfortably, feeling every eye in the room fixed on me. Today, I am sitting at my usual table, and as I open my laptop, the words come quickly, escaping through my hands on to the screen infront of me.
When I was diagnosed with, what was then called, Asperger's syndrome, there wasn't the same understanding and support that there is today. After a long process, I left with a piece of paper conforming my diagnosis, but no real idea of what it actually meant, beyond the ironically vague fact that I did not experience the world in the same way as those around me. My mum took me for diagnosis after reading Freaks, Geeks, and Asperger Syndrome by Luke Jackson. After reading it, she handed it to me and said, "I think explains you." The message I received was that my own mother thought I was a freak, a geek, and in some way deficient. This was the first time I had ever heard of autism, and it came alongside two condemning nouns that would remain with me for years. As a young single mother, I think my mum blamed herself for what she saw as my ‘behavioural problems’, and whilst I don’t doubt she sought diagnosis (at least partly) for my own benefit, having an external reason appeared to be a source of relief to her. I remember shortly after my diagnosis she triumphantly told one friend who had been critical of my behaviour and her parenting on a few ocassions, “it’s not my fault after all, he has Asperger’s syndrome and can’t control his behaviour.” Her friend’s reply, “is he on medication for that?”, was equally as damning. I know now that my understanding of autism was incorrect; I believed many things that have since been proven to be myths, such as autists don’t feel emotions, can’t make eye contact, and have no desire to socialise. I felt a wide variety of emotions intensely, I could give eye contact (when it was needed), and I longed for friends. I quickly came to the conclusion that I was misdiagnosed.
My understanding of Asperger’s syndrome came primarily from my mum’s sister who took to Google and became our family’s authority on all things autism. She would often list off symptoms and explain how I thought, understood things, and interacted with the world, based on her research. When I told a joke, I was told that it was my autism that made me funny, and that my family loved my autistic humour. When I was happy, I was “struggling to regulate” my emotions, and when I was angry, I was “having an autistic tantrum.” When I shared my opinion or attempted to join in discussions, that was just my “autistic tendency to speak my mind, despite how inappropriate those thoughts may be.” "That's just your Asperger's" became a familiar phrase. The more I disagreed with this prognosis, the stronger it was issued, and the stronger I would plead my case, desperate to be seen and understood. This had a devastating impact on my sense of self-identity and self-esteem. To prove my family wrong, I went out of my way to do the things I was told I struggled with or outright could not do. For example, I forced myself to try new foods, to make eye contact and smile at people, to respond to “how are you?” with more than just “fine”. I now know that this is masking, and its impact is devastating. By the time I was 18, I left home for further education with no idea who I was and a very poor grasp of reality. I was, however, certain of one thing: I was not autistic. I began to drink heavily to deal with my anxiety (which by this point was my permanent state), and as a prop to meet new people and socialise. I would sometimes half-jokingly reveal to people that I had been diagnosed with autism as a child. I loved to see the disbelief on their faces and being told, “there’s no way you’re autistic!” Looking back, I can see my ‘true self’ peeking out from under the mask, testing the water, attempting to find acceptance, and process the confusion and trauma of my childhood. This continued throughout my time as a student, and although I was drinking heavily, often behaving inappropriately socially, and struggling academically, I believed I was in control of my life, convincing myself that everyone secretly struggled in the ways I did. I told myself that this was, in fact, the human struggle that we all must confront and overcome.
A few years later, I met my wife, married, and had the first of our three children. Becoming a parent, whilst a time of great joy and intimacy, was also incredibly difficult and lonely for me. Noise, mess, and the general unpredictability of family life ‘triggered' me, and I found myself almost constantly overwhelmed, exhausted, and lashing out at those around me. I spoke to friends who also had babies and young children and the general consensus was noise, mess, and unpredictability were a universal struggle and something that would get easier with time. Whilst I benefited from this reassurance and solidarity, something told me that my experience was not the same. I would periodically seek relief through binge drinking, leaving me ashamed and anxious for weeks at a time. After one binge, I spoke to a friend with a background in Psychology who suspected that there was trauma in my childhood that was brought into the present by the transition to parenthood, and recommended counselling.
I spent the next three years going from one therapist to the next, acutely aware that there was a part of me that was not being seen and treated. There were times that I could put what I had learned into practice, and others where my outbursts felt uncontrollable, leaving me exhausted and ashamed (that is, if I could even remember them). I never once disclosed my diagnosis, and, in hindsight, I went into each session heavily masked and seeking desperately to be liked, hindering my ability to be honest. One night I told my wife that although councelling had been helpful, I felt a deep sense of restlessness and agitation that I did not understand. I explained that it felt like there was a part of me that was going unseen and untreated, and I was convinced that this was the key to unlock what was really going on.
Several weeks after this conversation, my wife went to the library with our children and out of curiosity brought back a short booklet refuting common myths surrounding autism. I read it (perhaps also out of curiosity, but more likely it was my ‘true self’ trying once again to emerge from under the mask). I was taken back to my childhood, as one by one the information my aunt had shared was disproved and a clear image of myself developed on the booklet in my hands. Two things became apparent to me: I had completely misunderstood autism and my diagnosis was correct. I spoke openly about my autism for the first time in years with my wife, who confirmed that she had come to suspect my early diagnosis was not a mistake.
As I began to research ASD, I found a community online (mainly through Instagram and TikTok). I was amazed to see so many people like me and I felt the stigma and shame that enveloped me for much of my life disappear. I struggled to find resources for autistic parents, with many searches turning up accounts of the experiences of neurotypical parents with autistic children, or impersonal clinical studies and journal articles (that is not to say there aren't autistic parents creating good quality content, just that I struggled to find it). This blog is therefore an attempt to contribute to the community online and to provide what I found lacking – the first-hand experience of a young autistic dad coming to terms with an early diagnosis of autism later in life.