Lost in the System: My journey through being diagnosed with Autism, ADHD and my fight to be heard!

I was 19 when I was diagnosed with Autism and ADHD. I had spent most of my childhood and teenage years knowing something was different about myself that I couldn’t pinpoint why. I knew there were certain things that I found hard, particularly after the transition from primary school to secondary school, which for me made my ‘social anxiety’ (a diagnosis I received at 17) much worse. I would sit in classrooms completely on the edge whilst everyone else was in their circles, not ‘fitting in’ and even if I had something I wanted to say, I was physically incapable of saying it. 

At primary school, I would sit in the dining hall with my fingers in my ears because it was too loud - but we were told that was because I went to a small nursery and wasn’t used to it. I excelled in most subjects at primary school and loved reading, yet have barely been able to pick up a book since the age of about 11.

Throughout secondary school I was never able to maintain friendships for more than a couple of years, I would get overwhelmed easily by certain subjects, but would breeze through others, and was typically always seen to be 'doing ok' as that is what my grades reflected. 

It wasn’t until 2020 when I started college, in between lockdowns, where I became quite mentally unwell. For me, being at home and the lack of usual routine and structure sent me completely spiralling to the point where I became very unwell with OCD for a few months in early 2021. I was a shell of myself, unable to do basic tasks, pay any attention to my education, or even experience life. In the height of this, after doing some research with my family, we began to wonder whether or not there may well have been something more. After researching (a lot) about Autism particularly in girls - which there is still a huge lack of information about - it became apparent that I ticked a lot of these boxes. When it all clicked and I was getting referred, I felt like such a huge weight was lifted off my shoulders; that reason I had always felt different now seemed to have an explanation, even before I had gone through the diagnostic process, I finally felt like I had some kind of answer - that I was in some way Neurodivergent.

I remembered on multiple occasions as a teenager thinking to myself I am sure I’m neurodivergent in some way, yet I had never really heard of the term back then and knew very little about any of it, and all of a sudden it was like every moment of doubt and feeling ‘different’ I had ever had in those 16/17 years was finally clear. 

I got referred by my GP for an assessment for Autism in the summer of 2021, when I was 17. I left college in 2022, having managed to go back to full time study just weeks after barely being able to leave the house due to what was deemed as mental health issues - which yes did contribute, but certainly wasn’t the full picture. I then began a full time job I am still in, whilst still awaiting any kind of update on my assessment. In January 2023, I received an email out of the blue, explaining that the service that I was under for my assessment no longer existed. I was basically just thrown out of the loop. There was no follow up, no being referred to another service and no further communication. I once again felt so completely lost, after 1.5 years of waiting for anything to even begin, I was straight back to square one.

I had to go back to my GP months later, to get re-referred, and answer the same questions, and the same paperwork. I could probably recite the questions of the AQ test off by heart I have done it that many times. 

In the end, I did end up receiving a private diagnosis for both Autism and ADHD, as I needed it for myself, for the education at university I had applied for, and also for my workplace. 

Even after this diagnosis there was zero post-diagnostic support for me, and after an NHS diagnosis last year, there has still been no support offered. I am still on a waiting list for ADHD medication, nearly 5 years on from my first GP appointment, with no sign of the waiting list for titration improving, just lengthening. 

Without me and my family having done extensive research, and without the help and support from knowledgeable people who have been through this themselves at My:ND Space, I would still be pretty lost as to who I am. 

Very little has changed for me in the past 5 years I've been in this process. 

Why should people have to hit severe mental health dips and crisis points before neurodivergence is mentioned? 

Why aren’t Teachers better trained to pick up on Autistic/ADHD traits in girls? 

Why are people still so easily getting thrown out of a systematic loop with no advice and support? 

And why, after multiple studies saying that Autism and ADHD have been under diagnosed, particularly in women and girls, are we now being told by Politicians and Journalists that there is an overdiagnosis problem? 

Things will not change, unless we push for the change ourselves, and whilst it shouldn’t be that way, one of the best ways we are going to fix things at the moment is by coming together and building each other up, which without My:ND Space, I would never have been given the opportunity to do. I will forever be grateful for such a place to exist. It has taught me so much about myself and other people, about how to be myself, and know that it is ok to be myself.