On the 4th May 2020, I was diagnosed with Autism (ASD Level 2). I was 52 years old.
To say it came as a complete shock is perhaps not true. It is true I had no idea I had autism, despite my son being diagnosed 10 years prior, but I did know that despite being sober from alcohol for 10 years, my life was getting worse, not better. It seemed that for my whole life, I had been planted on earth by mistake. I just didn’t seem to fit in anywhere, wandering through life, from place to place, country to country, without any idea how to connect with people. The older I got, the less able to cope I seemed to get. No matter what I tried, how hard I tried, juggling all the balls required in day to day life became increasingly difficult. Until one day I broke.
Very much like Elizabeth Gilbert in the opening chapters of Eat, Pray, Love, I ended up curled in a ball at the base of my bed, wishing like hell I had the courage to end it all. The pain of every day living had just become too much.
In January 2017, I entered a rehab on the beautiful shores of Curl Curl in Sydney. Despite being sober for 7 years, I was deemed unable to regulate my emotions due to grief and codependency on my mother who had died the same year I got sober. My counsellor had felt that my problems were as a result of not being able to live life on life’s terms. A residential stint in a rehab was deemed the thing I needed. Little did I know it would be the start of the journey to my diagnosis.
I entered the rehab a broken woman. I left rehab having been given the accolade by one of the nurses as being one of the most transformed inmates they ever had.
What I didn’t know then is that by removing myself from the demands of every day living, I was able to recuperate from a severe Autistic burnout. The strictly enforced rigid routines of the rehab meant I didn’t have to think, I only had to be in the right place at the right time. No cooking, no cleaning, no children, no worrying. I only had to pitch up to eat, drink and be counselled. This gave me space to breathe, and within a week I was feeling remarkably well. Other inmates marvelled at my ability to bounce back, and I’ll admit I loved that I seemed to “get it” quicker than most.
What I didn’t realise was that I was a whizz at masking, an autistic trait that enables us to hide our autistic-ness to appear more “normal” or typical, as we like to say. I mean, I was an ace at it. I wasn’t conscious of my innate ability to observe others and assimilate information and transfer that data into a set of behaviours that would mimic the “model inmate”.
I look back now and wonder how on earth that happened. It happened because that is what we Autistics do. We take data, assimilate it and then transform it into acceptable, if not perfect behaviour for the outside world to see. The problem is that this kind of data absorbing and manipulation takes an awful lot of energy. Energy that is simply not sustainable. Eventually who we are has to be let out, the neurodiversity we are born with has to be expressed, and so we have meltdowns, or burnouts, or find ourselves isolating just to have from the demands of trying to appear acceptable to the wider world.
After my release from rehab, once at home, with the model inmate of the year firmly rested in my mind, I set about my life as a woman reborn. I lasted a week. Back into the day to day demands, it didn’t take long for things to fall apart. By then, we were in the throws of a two year renovation, a wedding and a couple of big birthdays. Holding all the balls in the air was nigh on impossible.
In December 2019 I returned from an overseas trip and I broke again, only this time it was so much worse. Getting out of bed took real effort, getting dressed impossible – not because I didn’t want to get dressed, but the decision of what to wear was unbearable to even contemplate. Pyjama days became a thing. I couldn’t cook at all. The idea of deciding what to cook and then coordinating everything needed for that meal seemed impossible to accomplish. Instead I wondered around the house, mesmerised by crafting videos alternating crying for what seemed no good reason. I began to hate my life and myself, the guilt was enormous.
My mental health was plummeting and life seemed unbearable once more.
It was Dave, my husband, who gently suggested I get assessed for Autism. I looked him. I wanted to be angry at him, tell him to piss off. Instead, I asked if he truly thinks I am Autistic. He nodded, saying that he had suspected for a long while.
When I fronted up for my assessment, I was shocked when before I had even taken my assessment tests, the psychologist said that there was no doubt in her mind that I was Autistic. I remember that shock I felt, she said it in such a way that it was so obvious. I had no idea.
By the time I returned to get my result, I was terrified they would show I was NOT Autistic (read about that here).
But autistic I am and I’ll be honest, it is a relief. A relief to know that there isn’t anything wrong with me. A relief to know that I am wired differently – not alien dropped on earth by mistake, but in fact someone who just experiences the world in a different way. A relief to know that when my body is screaming for some isolation and a break from the onslaught of people in a social setting, I know that I am not a freak, but my neurones are overloaded and need a break – I can excuse myself guilt free. It is a relief to know that so many aspects of myself that I thought were so wrong are in fact so right and that I am able to live a full life on my own terms. It is a relief to feel that I have a right to exist, that I do have inherent worth, and that I am able to belong to a tribe of some of the most incredibly giving humans I have every come across.
Part of my Autism presents in a way that I have a dire need to control my environment. I do this by making lists and labelling the bejesus out of everything. Everything in my home pretty much has a place and everything that needs doing is on a list.
Since I am a list person, here is a list of me:
- Identify as female
- Introvert who loves being around people, but not actually talking to them necessarily.
- Have wisdom gained over more than half a century
- Am rallying against being put in a box (I wear various labels and am proud to own them all but I am much bigger as a whole than the sum of all my parts)
- Multipassionate (currently: reading, writing, crafting, furniture restoration). It changes a lot as a new shiny thing catches my attention.
- Climate change and minimising waste advocate – not perfect, but trying my damn best
- Recent vegetarian
- Adult child of an alcoholic
- Survivor of childhood developmental trauma
- Recovering alcoholic
- Recovering codependent
- Large bodied – supporter of the body positivity and Health At Every Size movement
- Sufferer of Androgenetic Alopecia, wig wearer (and I love that wig so much!!)
- Attempting to walk away from being so political (I’m losing the battle)
- Advocate of kindness (Just be freaking kind!)
- Craver of a more simple life
- Aesthetics are everything
- Writing is breathing
This space exists for me to explore parts of myself I have probably never ever known, to lean into, explore and embrace the new and improved Autistic Sarah.
Apart from my autism, childhood trauma has also had its part to play in the formation of the person I have become.
I also hope that through my writings those that visit here will find some value, be it through the relatability of my words or the ever growing list of resources I plan to house here.
Knowing I am autistic has truly set me free. I hope it does the same for you.