Autism: ‘Discovering that I was autistic as an adult saved my life’

Emily Katy was 13 when she had her first panic attack during a school field trip. Three years later, she tried to take her own life — and was admitted to a psychiatric unit.

The young woman was only diagnosed with autism at the age of 16, when her life suddenly began to make sense.

She then began researching the condition to learn more about herself — and decided to pursue a degree in nursing specializing in mental health.

A resident of St Albans, England, Emily is now 22 years old.

Below, she explains, in her own words, the importance of supporting neurodivergent children — and helping them understand themselves.

I don’t remember exactly when I realized I was different. Maybe it was when I was six years old, when I was reading Anne Frank’s diary, while my classmates were still learning to read. Or maybe it was when I was eight years old and was teased for not fitting in. Or maybe when I realized that other kids didn’t love learning like I did.

Despite knowing this, the early years of my childhood were filled with joy. My parents made sure I felt loved, and I spent hours playing imagination games with my siblings.

At age 13, I had my first panic attack on a school field trip. That’s when panic started to consume me. I had been anxious for a while, but up until that point, I had done well at hiding it. I had tried hard to fit into the mold, pretending to be like everyone else, but my brain couldn’t do it anymore. Practically overnight, I stopped being that child that teachers loved having in the classroom, and became that child that teachers struggled to get to sit still.

Anything could trigger a panic attack, but noise, crowds, strangers, changes in routine or thoughts of death were my main triggers. School became a real nightmare. As my anxiety got worse, I started having more intrusive thoughts about bad things happening to the people I loved and about germs that were making my family sick. I adopted compulsive behaviors such as hitting objects to try to stop this from happening. I didn’t know it at the time, but obsessive-compulsive disorder (OCD) was entering my life.

At 14, I had a few Cognitive Behavioral Therapy (CBT) sessions, and my school implemented some reasonable adjustments. But despite me swinging under my desk, running away from school, and having to be taken outside when there was a fire drill because I thought the alarm was too loud, no one suggested that I might be autistic. I had friends. I got 10 in all subjects. He spoke eloquently. I was just anxious, they said.

At 16, two weeks after starting A-Levels (the British version of Enem), I tried to take my own life. I believed that I wasn’t made for this world, and that the world wasn’t made for someone like me. My parents were devastated, but they did their best to try to understand and support me. I was admitted to the psychiatric unit of a child and adolescent mental health institution (CAMHS), initially voluntarily (which means I agreed to the hospitalization).

However, after three weeks, they suddenly took my diary away from me because it was a spiral notebook, a prohibited item. I wrote down absolutely everything on it, and it was my only way of dealing with an environment that seemed so out of my control. Worst of all, it wasn’t finished. And I didn’t know how to deal with that. My anguish increased. I demanded to be discharged, and then I was compulsorily hospitalized.

Despite having the most meltdowns I’ve ever had in such a condensed period of time, and despite my chart listing one autistic trait after another, my doctor said, “I don’t think you’re autistic, I think you just have a high level of social anxiety.” This was after my parents and I questioned it. My chart also said that “Emily has hysterical fits when she doesn’t get what she wants.” But that happened because my routine had changed, the noise had become unbearable, and I didn’t know how to deal with it.

I have no idea how my autism went unnoticed when it was so obvious. Instead, after a three-month hospitalization, I was diagnosed with generalized anxiety disorder and mixed personality disorder. These diagnoses include symptoms such as perfectionism, rigidity, difficulty expressing emotions, and other characteristics that could easily describe a distressed autistic person.

I managed to reintegrate into school, but I was still struggling with my mental health. I was fortunate that my parents were able to pay for a private autism assessment, which was supported by the CAMHS team. Just before my 17th birthday, I sat in front of a psychiatrist who said to me, “I think there’s an explanation for everything you’ve been through: autism.” At that exact moment, my whole world changed. Even though I understood very little about autism at the time, I felt immense relief. As if everything that had happened to me wasn’t my fault.

The following year was turbulent, with a second admission to the psychiatric unit and months under the care of the home treatment team. I was angry. I felt like I had been institutionalized because I was autistic — and not just because I had grown up, camouflaging myself, in a world that wasn’t designed for me. I felt that the very act of being hospitalized — because of my anguish at having to give up my diary — was because my autistic brain had not been understood. Although the unit kept me safe, and I am grateful to the staff who helped me, I ended up leaving more traumatized than when I entered.

Writing has always been my way of processing things, so I created my blog “Authentically Emily” — and started writing about my experiences. With this, I realized that I was not alone and I was able to learn about myself from autistic people who have worked tirelessly for so many years in the online awareness space.

I became a member of the charity Autistic Girls Network, and the anger at what I had been through turned into anger at what so many autistic girls were going through, across the country. This was the motivation for writing my book, Girl Unmasked: How Uncovering My Autism Saved My Life (“Girl unmasked: how discovering my autism saved my life”, in free translation). I never intended to write a memoir. But I discovered that I couldn’t share what I needed to say without telling the world about my process.

I didn’t want other young people to go through what I went through. A particular nurse in the psychiatric unit had helped me feel less fear and loneliness, and I wanted to be able to do what she had done for me, for other people. At the last minute, I switched my course choice from Psychology to Nursing to Mental Health.

As I progressed through the course, and my activism work outside of university developed, I realized that my motivation had changed. I was desperate for neurodivergent young people to understand why they feel different, understand how their brain works, and receive the appropriate support to be able to thrive. In September 2022, I qualified as a mental health nurse — and began working with neurodivergent children and young people.

Last January, I was diagnosed with attention deficit hyperactivity disorder (ADHD). It helped me understand things that autism didn’t fully explain, like why I need so much willpower to concentrate on a conversation and not interrupt people, and why my thoughts always seemed to race through my brain at hundreds of seconds. kilometers per hour, faster than anyone else’s.

I wish I had been shown the future at 16 years old. I love working with neurodivergent children, and being a writer is the fulfillment of a childhood dream. I hope that by sharing my story, I spark conversations about the importance of understanding autism in the mental health system. I want other autistic girls to know they are not alone.

According to a statement given to journalist Charlie Jones, from BBC News.