Issy tells their story of growing up with Autism Spectrum Disorder.
Content warning: Discusses experiences of mental illness, eating disorders, addiction and weight gain.
I have been mentally ill ever since I knew what it meant to be alive. I remember having constant anxiety about what I was going to eat for lunch or if I would make it to day-care on time. The most visceral experience of my anxiety came in prep when it was a casual clothes day. I was so anxious about whether or not I had gotten the day wrong that I packed my full school uniform in my bag, even going so far as to leave my lunchbox at home so I could fit in my school shoes. This was the first of many times that I did this.
It wasn’t just anxiety that made school hard, but the fact that I had to be around a group of loud, playful 5-year olds for many hours of the day, without a break to myself. To any ordinary 5-year-old, this would be the dream, but for me, I was often so wrought with fear that I couldn’t bear to leave home. I would do anything in my power to stay home from school.It definitely got easier, but how I behaved and felt at school remained very different from at home.
At parent teacher conferences, I would get rave reviews, with words like‘ wonderful’ or ‘a pleasure to have in class’. My mother would often smile about it as the teacher talked about my near immaculate classroom behaviour only to question me in the car ride home about why I chose to be such a perfect child at school, but scream and cry at home. She was understandably hurt, if she thought I was choosing when to ‘act up’ and when to ‘be normal’, but there was always more to the puzzle.
Around the time I was transitioning from primary school to high school I was diagnosed with anxiety, insomnia and depression. At this stage, my school behaviour was still perfect and luckily for my parents I suppose, my meltdowns were much less frequent than my previous daily ‘tantrums’. We thought that getting these diagnoses and perhaps trying yet another therapist would help me to be able to act how my mother and the world expected me to. However, with each therapist visit, I became more and more resentful towards my whole situation. I just wanted the darkness and fear that overwhelmed me most days to go away. But nothing, not even the many medications that we tried seemed to dampen the pain and pressure that living a ‘normal’ life seemed to put me under. I was hurt, both that I was trying so hard to be normal and that there was no outcome.
I kept this all to myself of course. Trying my best to only let the rage and sadness bubble up in private, where I would weep and weep, hoping that for just one night I might be able to sleep without the interference of the mighty power that is insomnia. I fell worse and worse into a state of self-loathing that I had no control over and that seemed to dictate every move I made. Year 10 was abad year. My attendance was at an all-time low as my mental state grew more and more dark. I felt lost, hopeless and misunderstood, especially by myself. The anxiety perpetuated to such a strong extent that I began to retreat even from life’s most basic necessities. Eating became so hard. I only forced myself to eat a single meal a day of my “safe foods” and I gradually became more and more unhealthy, both mentally and physically.
My addictive personality, that when I was younger looked like reading all of the books in a series in a single week without doing anything else, soon turned into an addiction to laxatives. The feeling of having eaten was so overwhelming to me that I couldn’t fathom having food in my body for more than 12 hours. I was addicted and I lost all control. I continued this cycle until I finally ran out of laxatives. In tears, with the empty box in hand, I told my mother that I believed I had an eating disorder. I was right.
At the children’s hospital, I was given a nine-month intensive eating disorder recovery program. Just like the mantra I seemed to always adorn when I was younger, “go BIG or go home”, I truly smashed the program. As my eating disorder, Avoidant Restrictive Food Intake Disorder (ARFID) turned me into a frail, shell of a person, my recovery required me to gain around 50% of my body weight. In the process, I taught myself that even though lots of foods are scary and that life is scary, I could handle it. As much as I resented the more than weekly appointments with my full parental set (mother, father and stepfather), it was the push I needed to get healthy and move forward.
“Have you ever considered testing Issy for autism?” asked the family therapist one random Tuesday morning. My heart jumped a beat. In my own spare time, I had been taking (very illegitimate) online tests, trying to prove to myself that I wasn’t autistic. To my dismay, they all came back with responses suggesting I was very much on the spectrum. Knowing this in the back of my mind, I felt validated as soon as the words came out of his mouth. It felt right - at least according to the copious amounts of online research I had been doing. Apparently, my mother had considered the idea, briefly when I was little, but was invalidated by a relative who suggested I was just misbehaving, and that I “didn’t have anything wrong with” me.
Within a few months I was diagnosed with Autism Spectrum Disorder (ASD). My biggest fear going into the diagnostic session was that it was going to end with me not being autistic. I was worried I would have to find something else to fill the void that I felt inside of me. But I didn’t have to worry. According to the medical professionals, I was autistic. It felt good.
I posted on my social media the day of my diagnosis. It was essentially a combination of a poem about how it feels to be inside my head, as well as a quick talk about what having ASD would mean for me. I lost 25 followers that day. It was hard to see blatant bigotry so obvious, and especially in my own circles, whom I thought were inclusive. My immediate response to my diagnosis was relief, for a lot of my friends and family, they were shocked. But I can’t blame them for being so. After all, the representation of young women with ASD, while few and far between, always looked a certain way. A way did not seem to line up with the world’s experience of me. I didn’t realise how much effort I was putting into hiding a condition I didn’t know I had, but seeing the knots unravel in my head, meant that a lot of how I had felt for the past 16 years made a lot more sense. I tore off the mask.
I wrote a poem about the feeling, as writing had always been a way for me to express myself without having to justify its purpose. I felt I could speak truthfully in my poetry, even if they weren’t very good (which they most definitely were not).
maybe i’ve worn
this mask so long
maybe it hurts
too much to take it off
that’s a lie
i tell myself
to replace the truth
the truth that
that i’ve forgotten
that i’m even wearing a mask
it fits even better
than a glove.
2019 was a tumultuous year, that began with me being more sick than I have ever been in the middle of Asia. This was followed by an intensive eating disorder program, an ASD diagnosis and then an admission to a psychiatric ward. I did a lot of learning and growing that year. Even though it was by far the hardest year of my life (they seemed to begetting harder exponentially), I came out of it such a different person than I had entered it. I was hurt, in pain all of the time, but I felt less constricted by the image of myself I had so carefully created after years and years of believing that the world wasn’t made for someone like me.
Being diagnosed with autism, something I had speculated about for many years in secret, helped me realise that the reason life was so tiring to me was because of my ‘wiring.’ I wasn’t just an anomaly. It felt good to have a word to describe me. It definitely didn’t feel good that the rest of the world seemed to have a warped view around what ASD even was (which is probably why it took me so long to finally be diagnosed), but from then on, it wasn’t about what other people thought about me. After 16 years of warping myself into a fake ‘normality’, I let go.
My mother and I are very close, we always have been. Like two peas in a pod. After going through such a process with me, getting the help, vocabulary and resources I needed to properly be who I was, she was understandably exhausted. It was definitely a shared exhaustion. It got to the point, where we were exploring how ASD impacted my life, to the extent that my mother herself was encouraged to seek a diagnosis. While it is very recent, having a mother who also understands the struggles of living life as an autistic person in a neurotypical world is incredibly validating. To share a house with someone who gets that your “eye contact” is just cleverly trained “mouth watching” instead and who understands that staying in the city a few hours longer so I can miss the peak hour train is worth it. We have a mother-daughter relationship like no other!
Learning about this aspect of me has also allowed me to pursue opportunities I never even thought would be possible. Furthermore, identifying as I truly was, led me to finally have the confidence to apply for a job within the disability space. I was selected for a leadership program run by the Youth Disability Advocacy Service (YDAS). YDAS runs leadership programs and has educational resources for disabled young people as well as their family members and carers. They also provide a voice for people with disability through systemic advocacy and provide individual advocacy for young people with disability who need it.
While I was eventually unable to participate in the program as a client, I was lucky enough to obtain a position working at YDAS instead. Through embracing my identity, I have been able to run workshops for other disabled young people about identity, advocacy, goal setting and gaining independence, which has completely changed the course of my life. I have gone from struggling at school, to feeling inspired to pursue education after high school. I am so lucky to be involved in such an inclusive community and organisation with YDAS (external link).
While being autistic in a neurotypical world has definitely made my life harder, I am so grateful for my ASD diagnosis as it has increased my understanding of almost everything. I am excited to keep learning more about myself!