Welcome back to the next chapter of Laura’s Autism Story
It’s been a year since we last caught up with Laura Jackson (Administration Officer for Dundee) where we got a glimpse into their unique experience navigating life and work with autism. In Part 2, Laura shares how things have unfolded since then and the highs and lows of the formal diagnosis process.
Laura’s Charity Bungee Jump
“Me Again! I have now been clinically diagnosed with ASC (Autism Spectrum Conditions)
The process to get to the point of diagnosis and following diagnosis has taken a big toll on me emotionally and it will take some time to process.
I wanted to detail some of my journey so that others going through the same process understand what may arise, so it is not so unexpected and intense. I also wanted to write this update to show a wider demographic of people details of my journey before and after ASC diagnosis and to highlight that not everything is “cured” or “answered” when you receive a diagnosis.
My diagnosis is the start of a much bigger process of self-discovery because I now realise that the world as I see it, is different to how others see it.
During the process of my diagnosis, the psychiatrist also advised that I have traits of ADHD, and Sensory Processing Disorder but they did not “clinically” diagnose me for those conditions.
It took the NHS three months to confirm my diagnosis, which took a high emotional toll on me and felt like I had been frozen in time and wasn’t sure what do to.
On the day of my diagnosis, I walked into the Alloway Adult Psychiatry Centre in Dundee; I was advised of my diagnosis and then discharged – it all happened within the same 30-minute conversation.
I was offered support at Autism Initiatives which I had already completed, so no other support was available. The NHS provided no paperwork or report to help explain why they came to this conclusion, how this could impact my life or how I could support myself better. To receive a copy of the reports, I had to submit a data request form and then wait to see if this was approved before I could potentially see crucial information. Even then I wouldn’t get to see everything. The entire process is not Neurodivergent friendly, or person centered at all, and left me feeling very stuck. At this point, I couldn’t see how to move forward, due to the lack of information or guidance on how to process it. It just feels like another word to add to the vocabulary that describes my health and daily struggles, with little support on how to better navigate life.
My relationship with Autism (ASC) since Diagnosis:
I felt numb for the first three months. I was often just lying in a room cuddling my dogs with no tv or noise. For the first time ever, I tried to sit and process a piece of information (ASC) and how it affects my life. It has helped me make sense of how people react towards me, my self-talk and attitude, and how I interact with other people. Communication, whether verbal or written, is crucial. I don’t think I previously understood how important it was to understand body language, thought process and communication styles. In the past I thought I was crying out for help; but others didn’t see it. It all makes sense now as I have realised that I struggle to express or articulate my emotions or feelings accurately.
Being undiagnosed with Autism (ASC) for years, and the emotionally draining process to receive a diagnosis left me feeling trapped, with a lot of self-hatred and a very negative outlook. The relief I had initially felt when I had finished my assessment evaporated. I felt right back at square one if not further back, because now I was aware of my struggles but felt helpless. I ended up paying for private counselling to help digest the entire process, and discuss what I could do to move forward, but this isn’t cheap or accessible for everyone.
I always knew there was something different about me, so the diagnosis was welcomed; it was more of a relief that I did, in fact, process the world differently, and that’s why I have struggled so much.
The main struggle since diagnosis seems to have been society’s attitude towards it and lack of support available. There appears to be no treatment or advice, it’s something you must figure out for yourself.
I often get asked what has changed since my diagnosis or what has been the benefit of a diagnosis; my answer is validation. It has helped me know how to communicate my needs to others and has allowed me to meet more like-minded people, which has helped me with my loneliness and isolation.
Navigating life with this new piece of information has been life-changing, but I still have moments of imposter syndrome. I have become more self-aware of how things I say come across, I am more confident to explain how something has made me feel or ask for clarification and I take feedback less personally.
First Meltdown/ Burnout since diagnosis:
The feeling of isolation was heightened and reaffirmed when I had my first burnout and public meltdown since being diagnosed, in October 2023. It brought up a lot of my feelings; emotions I didn’t think I would feel again after my diagnosis.
I have had meltdowns and been dysregulated since, but, after having a flare up with my health, plans being cancelled last minute by friends, a space at the football that was meant to be quiet being packed full of people and finding out my grandad had dementia…. I broke. I had a very public breakdown in front of lots of people. Floods of tears, shaking, struggling to communicate…. It was awful, everyone was just staring at me.
It reconfirmed to me that though I have more understanding of Autism (ASC), the world still has a very long way to go.
My experience is people forget or don’t seem to be aware that adults can be autistic and have other hidden disabilities, and so get overlooked. During my public meltdown at the football, there was a child who wasn’t fazed by the whole situation, so everyone just continued to be noisy, whereas I was breaking down and had to keep leaving the area to lock myself in the toilet to cry and try regulating myself. I would be able to re-regulate to a point where I felt that I could go back to space, however, what I didn’t allow for was that nothing had changed in that room, so it kept triggering further meltdowns. I eventually had to leave because I just couldn’t be in that environment as it was.
Meltdowns often bring a feeling of shame and embarrassment. I felt like I was ruining the time of those around me and felt judged. That week I felt a spiral happening. I had felt very anxious, but I thought it would pass. When I got home, I ended up having to take my additional medication which sedates me so I could sleep and get some rest. The rest of the weekend and week, I cancelled all my plans and disappeared into Dreamlight valley helping Mickey and friends restore their village, whilst watching Still Game on repeat for the 500th time.
This public meltdown knocked my confidence massively, and my mental health dipped quite rapidly; I still went to work and to the outside world I presented as usual, but I was really struggling. I find it such a difficult thing to talk about because I feel childish, and people might perceive me differently or attention seeking. People normally perceive me as open and upfront but at times like this I feel so dissociated and isolated.
My public meltdown was a reminder that this will always be part of my life and just because I have a diagnosis doesn’t mean my struggles will magically disappear. I will be able to reduce the number of meltdowns, or sensory overwhelm but will never be able to totally eradicate them. When life throws challenges, and you are ‘on a cliff edge’- it could be as simple as someone changing something very small – all the dominos fall. But every time you try and stack the dominos back up something else happens -even minor – and they all fall again.
Everyone expects you to be able to advocate for yourself because you have a job, rent a flat, and own a car etc. What is not obvious to the outside world is I feel like my whole world is crashing down, I feel intense pressure and I get rid of a lot of my possessions as I feel cramped. On a typical day I can usually ask for support, but at times like these I isolate myself and just try to ride it out. Asking for help or accepting support, is beyond impossible. I feel like a burden and intense guilt that I am in a similar situation again. During these times I often feel invisible, and without a voice.
There are moments like this where I still get frustrated at myself because Autism (ASC) affects so much of my life, but differently every day. There are so many factors to balance and equate for and I feel exhausted. It affects how I date, how I make and keep friendships, my relationship with my family and how I navigate my career. I have felt for years I have been overlooked and under confidence in most aspects of my life and this has not gone away.
My future
I think the coming months and years will be tough; apparently, you go on this two-year rollercoaster of processing your life and adjusting to this new piece of information. I will be reading up a lot about autism from other autistic professionals, authors, and influencers, listening to podcasts and trying to meet others like me. With support from my friends and family, and private counsellor I think I will be ok! For the first time ever, I can see past the current week and am excited about what the future may bring.”
If you haven’t read Part 1 of Laura’s Autism Story, you can find it here.
