I Was Always Autistic, You Just Ignored It

As a child I was what people now call a school refuser. I attended six different schools and never wanted to go to a single one. I wouldn't get out of bed. I didn't want to get dressed. My Mum struggled so much with getting us ready in the morning, social services gave us a “Home Help” (part of a short-lived 1990s initiative). Having a new person in the house completely overwhelmed me. Our poor helper, Dorothy, barely lasted a few weeks, bless her. On the days my Mum could get us out the door, the walk to school was just as turbulent. I would hold onto lampposts and refuse to move. My mum would try to pull me forward, and I would cling to the cold metal poles with both arms, screaming while she tried to pry me off. At my second school, when I was about 6, the headmaster began waiting in the playground every morning. He would take me from my Mum and carry me into the building while I kicked and screamed. Once I punched him in the stomach. Another time I bit down on my Mum’s finger so hard it took four adults to pull me off.

I really didn't want to be at school.

As I got older, it became harder and harder for my Mum to get me there. My attendance dropped so low that I was assigned a social worker, who would come to our house and threaten to put my Mum in jail if I didn’t go to school. It didn't work, I couldn't make myself cope. 

I wasn't a bad child, yet I was always in trouble. Always being told off. Detention. Excluded from school trips. Made to sit at desks next to the teacher, or separated from other students. One day I was forced to sit alone in the classroom while the rest of my class went to explore the field behind the school for insects. When I asked why I wasn’t allowed to go, the teacher said: “You know why.”

But I didn’t know why.

All I knew was, school was torture.

The noise, the smells, the crowds, the heat; the jostling packed corridors; the stiff, scratchy uniforms, painful hairstyles, and uncomfortable shoes; the forced routine; the rules that made no sense; the inequality between teacher and child; the inability to study the things I was interested in; the flickering buzzing fluorescent lights; the locker doors banging; the forced socialisation; the forced sudden change from one subject to the next at the ring of a bell; the forced mealtimes; the forced pretence that I was coping; the lack of breathing space; the fact that nobody ever seemed to understand me; the inability to hide anywhere, just to be alone; the need for quiet; the hundreds of faces, all eyes watching me. 

Every moment was a living hell.

While I hit most of my developmental milestones, like walking and talking, I was very late with toilet training. I struggled intensely with going to the toilet. I had accidents well into primary school, at an age where that becomes deeply humiliating. It invited bullying from other children and frustration from teachers, as though I was doing it on purpose. Eventually, the problem became so severe that I was forced to undergo invasive medical interventions to prevent me being hospitalised. I am still traumatised by those experiences. 

In the end, I dropped out of school in year ten, with no GCSEs.

In the 1990s and early 2000s, I was described as bad. A truant. Naughty. Willful. Troubled. A problem child. In my 20s I was given a new word: 

Autism.

At the time, conversations around autism were beginning to rapidly arise in online spaces and academic discourse. Women were finally being recognised; “masking” became a word you didn't have to explain; the adult autistic community were joyfully using hashtags like #ActuallyAutistic and #AskAnAutistic; and the concept of “neurodivergence” was spreading.

It felt like a good time to be welcomed into autistic communities and research. I thought we were finally moving towards a place of real understanding… I was wrong.

Fast forward a few more years and autism is back in the news. Except this time, everything is in reverse. “Experts” are arguing that the spectrum has become too broad; that diagnoses are being given out too easily; that people who aren't really autistic are stealing all the resources; that autism is trending - like a must have accessory. Autism diagnoses are now the Stanley Cups of 2026. 

I read these arguments and feel confused. I don’t understand why anyone would be angry about people like me having a diagnosis. I didn't buy it at a shop. Just like everyone else who is diagnosed by the NHS, I waited over 14 months for my diagnosis (which is actually a very short period compared to most). I underwent hours of assessments over weeks. My school records were examined. My paediatric medical notes. My mental health records. My childhood diaries. My mum was interviewed about my early development. An entire team of clinicians carefully reviewed the evidence of my life and agreed that I had been autistic as a child and was autistic as an adult. Eventually, I got a letter saying “You meet the criteria to be diagnosed with Autism". 

And that was it.

No services. No support. No treatment. No medication. No free house or car or jetset holidays. Just the letter, and a code in my medical records. 

There is no magical payout at the end of an autism assessment, as is implied by a lot of the media. There are no services for autistic adults who need help managing their lives. I got no material gain from my diagnosis. But what I gained personally was far more significant. I finally had a framework which explained my life. A language. A community. And despite that hurting no-one; taking no services away from a single person; causing no inconvenience to anyone around me, “experts” now want to take that away, because their narrow understanding of autism doesn't include me.

The problem with these “debates” is not only that they are dehumanising, prejudiced and politically motivated. It is that on a basic level, they are profoundly reductionist and wrong. 

The current model treats autism as if it can be neatly divided into levels: mild, moderate, severe; level 1, 2, or 3; “high functioning” vs “low functioning”. But this has never been my experience. People talk about “being on the spectrum” as if Barely Autistic is at one end, Supremely Autistic the other, and every autistic person falls neatly into their own tidy little spot, somewhere on that rainbow. Well, you know what. I'm calling bullshit.

I Am The Spectrum

The categories people argue about (social communication, rigid behaviour/restricted interests, executive dysfunction, sensory reactivity etc) assume stable functioning, like we are fixed, static beings. Perhaps that is the case for some autistic people, but it’s not my experience. My life has never stayed inside any one category.

As a child I could sit quietly in my bedroom for twelve hours straight, copying facts about manatees into dozens of workbooks; lining up my toys by order of height; and plotting my rabbits’ weight and body measurements in growth charts, all the while forgetting to drink or go to the toilet. I read extremely early and above my grade level. When we went out, the pram would be stuffed with books, and I would read the encyclopaedia while my mum did the shopping.

And yet that same person who can spend hours completely absorbed in something of interest, can, at other times, be unable to manage even the most basic tasks. I have written academic research papers that required sustained concentration, while at the same time I haven’t eaten or drunk for days because microwaving a ready meal felt too complex or the sensory intrusion of having different flavours and textures in my mouth was too overwhelming. 

I go months without leaving the house. Showering, brushing my teeth, changing my clothes (tasks many people barely think about) are often overwhelming combinations of sensory distress and executive dysfunction. Unless I have to go somewhere, I wear the same clothes day and night for months at a time because I simply cannot face the process of changing them.

I am described as “high-functioning”, but what gets overlooked is that I am not always high-functioning. In fact, I am often entirely non-functional. But because I have a “high IQ” and can sometimes explain myself in writing, all that is seen are my words - not what they actually say.

The same is true of speech.

I have a more complex relationship with speaking. My writing has frequently been described as eloquent or articulate, but not my speech. Sometimes I cannot speak at all. Words simply will not come out of my mouth. This can happen when I am overwhelmed or in an unfamiliar social situation, but it can also happen when I am calm, at home, even when I am alone. It’s not the same as anxiety. I am not frozen by fear, rather, I am pulled into silence, trapped in my head, unable to utter a sound, even where my needs or safety rely on it. It's like I just forget I could ever speak. 

I try my hardest to speak fluently. I have passed interviews; given presentations; taught university students; done press interviews; and called out behaviour in public when I have witnessed injustice. But that ability is not stable or reliable. It appears and disappears without warning. For all the occasions I have been able to speak, there are a dozen more where I’ve frozen, excused myself, cancelled, or not been able to show up.

Then there are meltdowns.

As a child, when I was around two years old, I began experiencing overwhelming meltdowns. At the time, these were labelled “tantrums”, but they were nothing like a tantrum over not getting a toy I wanted or something not going my way. Meltdowns were triggered by something as small as the smell of a particular food being cooked, the tag on my clothes rubbing against my skin, or a sudden change to my routine. It feels like a rising panic, a desperation to smash my way out of my body, to rip off my skin, to break every bone, just to quiet the noise. I would scream in pain, smash things, hurt myself, and struggle against anyone who tried to restrain me.

I am not a violent or aggressive person by nature. But when my nervous system overloads, control disappears, and I can end up causing harm - usually to myself or my things, but sometimes to others who have tried to restrain me. It’s not a nice thing to think about. It’s not fun or trendy to remember biting, pushing, or hitting people who were trying to help me. I feel ashamed to know that I have frightened my friends, hurt my family. Disability Pride has its place, but I don't feel proud to admit that I once bit deeply into my Mum's scalp, in public, on the high street, as she tried to stop me biting myself. But that's the nature of a meltdown. An erupting volcano, scorching itself with its own lava, while taking down everything in its path.

When I was two years old, my mum’s GP prescribed me Phenergan, an antihistamine often used as a sedative, which I was dosed with sporadically, without my knowledge, until I was about 11. No consideration was given to why a child was being sedated. My medical records state that I was a “classic fiery redhead”, and I was simply conceptualised as “angry” because I am ginger (no, I’m not joking).

As I got older I learned to recognise some of the signs of impending meltdowns, or to avoid certain situations, but I cannot fully stop them. I can sometimes suppress them for a number of hours, but eventually I break. I have been hospitalised as an adult by injuries I’ve caused myself during a meltdown. I have hidden in public toilets so no-one can see me screaming or hitting myself. On one occasion, my friends took me to A&E, where I locked myself in the bathroom and tried to pry the mirror off the wall to hurt myself, not even noticing it was made of metal not glass.

The problem with meltdowns is I cannot know for sure when or where they may happen. Because of this, my world has become smaller. It’s one thing for a young child to lie in the street screaming, it's quite another when you are an adult.

I struggle to leave the house. I avoid places that might overwhelm me. I live in ways that reduce risk. Not because I want to, but because I have to - it's not fun being arrested or detained by the police when you're intensely distressed. Believe me.

And yet none of this fits neatly into a category, because sometimes, I can do things.

I can give you a one-hour lecture off the top of my head about any of my special interests, but I cannot cope with a hairdresser. I can show you hundreds of notebooks of song lyrics I've carefully written out and illustrated by hand, but I haven’t been to a dentist for 19 years. I could do a tour of all my niche collections, explaining the history and backstories of each piece, but it hurts to look people in the eye. One of my favourite things in the world is to read, write, and research, but I can take years to write a single blog. I don't know how to hold myself in a way that others don't notice as odd. I don't know how to “see the big picture”, without seeing the millions of tiny details all so obviously in the way, but apparently invisible to everyone else. I try to let things pass like people want, but if something is wrong, breaking a rule, going against my moral code, I cannot stop myself from acting. Having people touch me can be physically painful, everyone who knows me asks first before trying to hug me. I don't know how to take turns in a conversation, either speaking over everyone, or just never speaking. I have no foolproof method of working out if someone is being literal, figurative, or making a joke. I laugh in all the wrong places. I am so literal, people think I am being deliberately obtuse or difficult. I rock back and forth and hum without noticing. Certain noises, like chewing, make me want to kill myself. I get so overwhelmed by people trying to keep in touch with me, I have all my notifications turned off, and can disappear for months at a time - until police or services come to my house for welfare checks. But I can tie my own shoe laces, so what’s the problem?

When people insist that autism can be neatly divided into levels - mild, moderate, severe - I don’t recognise myself anywhere on that line. Because I am not standing at one fixed point on the spectrum.

I am the spectrum.

A Whole New Face

There is another part of my experience that I am seeing denied more and more frequently, and that’s masking. Masking is described as a strategy where autistic individuals consciously or unconsciously suppress autistic traits and mirror neurotypical behaviors to blend in, appear non-autistic, and avoid social stigma [1]. The rising argument against masking suggests that if you can “pretend to be normal”, then you cannot be autistic.

That makes no sense to me, because so much of my life has been spent absorbing the negative reactions to my presence or behaviour. It's literally operant conditioning - ABA in the wild - if you bully, tease, humiliate, and pressure a child enough, they will likely try very hard to change their behaviour. Even if it really really hurts to do so.

As a teenager, I read books on psychology and human behaviour, trying to understand people. I created social scripts. I practiced laughing. I rehearsed conversations in my head, over and over again, learning how to respond in ways that would make me seem normal.

I noticed that the children who were most accepted were often considered funny, so I bought joke books and copied jokes into my notebooks, memorising them so I could use them in conversation. I even collected props - practical joke sweets, gadgets, fake limbs - trying to replicate something I didn’t naturally understand. It never worked the way I always thought it would. People were more often confused than amused by my antics.

But the effort itself was real, and it was exhausting. Like acting a part, all day, every day, pretending to be like everyone else.

As I got older, that effort became more refined. I learned how to adjust my tone, how to mirror people, how to say the right thing at the right time. I could present well. I could speak more fluently. I could appear engaged and capable. But that ability is not natural, and it is not fixed. It is something I have to build, consciously, in real time. And it comes at a considerable cost - because when I am masking, I am not relaxed. I am not comfortable. I am not myself. I am performing: remembering how long to give eye contact, counting down in my head before looking away; ensuring I keep on top of my emotional reactions, laughing in the right places, pulling the expected facial expressions, giving my voice bounce and colour; trying to keep track of the conversation, reminding myself to respond with curious questions or follow ups, to show I am actively listening; holding my body still, in positions which look relaxed, while resisting the urge to check the clock or run away; engaging in meaningless small talk, trying to remember what the day, week, month, season, holiday it is to ensure the small talk is context specific. 

For someone who does not like eye contact, with a naturally blank facial expression, a flat voice, and who is so physically awkward I tend to flail my arms around like a wind turbine during conversation.. its fucking exhausting. When that performance hits its peak, something gives. I might meltdown catastrophically and end up needing medical attention. I might lose the ability to speak or function for hours, days, or weeks - needing significant recovery time. I might not even make it to the end of the interaction. I've had countless embarrassing experiences of suddenly losing the ability to speak or function as expected during social interactions. It's deeply humiliating. 

It’s also, once again, unfixed. I am not good at masking. I am sometimes good at masking - but again, whether or not you believe it's real, that part always seems to pass people by. 

I Am Not Theoretical

I keep seeing the same arguments repeated. “Autism has been expanded so far it has become meaningless”; “the spectrum is now too broad to be clinically useful”; “people (particularly women and AFAB people) are mistaking anxiety or shyness for autism”; “people (particularly women and AFAB people) with “personality disorders” are using autism as a hide out, to avoid stigma or self-reflection”; “people are self-diagnosing or “stealing” autism diagnoses to feel special and gain access to some kind of nebulous, as yet undescribed, benefit from calling themselves autistic”; and “masking is not real, because if you can appear “normal”, you cannot be autistic”.

The people having these debates often speak as though they are discussing theoretical categories. Diagnostic thresholds. Prevalence rates. Conceptual boundaries. But autism is not a thought experiment. It is a lived reality that shapes how children are treated in schools, how adults are understood by clinicians, and how distress is interpreted by the systems meant to help us. When those systems misunderstand autistic people, the consequences are not academic. 

Autistic people (particularly women and AFAB people) are at significantly increased risk of suicide. This is not controversial. It is well established across multiple studies, which consistently show elevated rates of suicidal ideation and attempts in autistic populations, alongside disproportionately high rates of death by suicide in autistic women [2,3]. But this isn’t just data. It is what happens when people like me are seen, again and again, and still not understood. It’s putting our friends and family in the ground because no one was willing to listen.

When I was a child, I was told “you know why”. I didn’t. I had no language for what was happening to me, no framework that made sense of the way I experienced the world, only the certainty that something about me was wrong, and that everyone else seemed to understand something that I didn’t. Not any more.

I was overlooked because I am female. Not because my childhood presentation was subtle or atypical, but because I was not a boy. I was seen by teachers, doctors, social services, even the police; I was punished, managed, medicated, criminalised, and escalated through systems that all recognised something was wrong, but none of them were willing to accept what they were seeing. Instead of understanding and support, I was reshaped. Forced to be good, quiet, accommodating; to not embarrass those around me; to anticipate and prioritise the needs of others (especially boys and men); to make myself smaller, to take up less space, to become someone who could exist without causing disruption. And with every punishment, every humiliation, every correction, I was pushed a little further inside myself, until what remained was not an absence of autism, but a version of it that had been forced out of sight. I was pummelled and crushed into the shapes people wanted me to be, until I can now hide my autism so well, people refuse to accept it even exists.

This is what gets erased in debates about whether autism has become “too broad”, not just diagnoses, but the lives that were always there, waiting to be understood…

Well, I’m done waiting. This is me, and I am no longer yours to define.

Wren

References

1. National Autistic Society. Masking [Internet]. 2026 [cited 2026 Mar 29]. Available from: https://www.autism.org.uk/advice-and-guidance/behaviour/masking 

2. Hirvikoski T, Mittendorfer-Rutz E, Boman M, Larsson H, Lichtenstein P, Bölte S. Premature mortality in autism spectrum disorder. British Journal of Psychiatry. 2016;208(3):232-238.

3. Cassidy S, Au-Yeung S, Robertson A, Cogger-Ward H, Richards G, Allison C et al. Autism and autistic traits in those who died by suicide in England. The British Journal of Psychiatry. 2022;1-9.