My Autism diagnosis empowered me to be myself

My Childhood 

My earliest memory is one of me at the age of 4 trying to suffocate myself under my duvet cover. I must have just had another autistic meltdown and left alone uncomforted. I did not want to be in this world since the very beginning, but I never quite understood why.

I grew up with ‘Britishly’ loving parents, in a safe household, and without abuse. Yet, my earliest childhood memories are of me feeling depressed, alone and neglected. I remember having autistic meltdowns alone in my room and feeling desperate for someone to come and comfort me. I did not know how to express my need for comfort at this time and was unprepared to fight my mum’s attention away from my four other siblings.

I was incredibly shy and scared of everyone, always trying to go unnoticed. My biggest wish would have been to be invisible. I would cover my mouth with my hand whilst speaking, in the hope that my voice would go unheard. I was always saying the wrong thing and became scared to talk. Everyone commented on this strange hand covering behaviour, and I was forever being shouted at by adults because of it. Which only made me want to disappear a whole lot more. 

Complaining of stomach pain every day, my mum regularly took me to the doctor to find out what was wrong with me. I saw an allergy specialist who told me that I was allergic to everything. However, there was no correlation between these foods and my stomach pain. Only now do I realise those years of stomach pains, were caused by anxiety.

Childhood OCD

At the age of 9, I started to show OCD behaviour that caused me a lot of distress. I hid rubbish under my bed because I refused to throw anything in the bin, and started to believe that the garden toys had feelings. Each night I had to put ALL the garden toys away in the garden cupboard so that they could be ‘safe’ for the night.

Sometimes, I would forget and only remember after glancing out my bedroom window into the garden. As it got dark, my mum would tell me it was too late for me to put them away, and she would not come outside with me. I would start crying and get incredibly upset about it. My mum was confused and frustrated about this obsession and would often get angry at me about it. I remember evenings where I would be running around the garden in the dark, scared and crying, picking up all the toys to make sure they were all safe in the cupboard.

My OCD symptoms later changed, and I started being more repetitive with my actions. I had to do everything four times. Four was my number, probably because it was my lucky number. It’s an even number, and in my head, it’s visually symmetrical. Nearly every action was repeated four times. My gymnastic moves done in four’s, and everything I touched had to be touched four times. Each time before I slept, I had to go to the bathroom four times, turn on and off the TV four times, open and shut drawers four times, get in and out of bed four times, the list goes on forever. It would take me hours and hours to get to sleep.

I probably saw two therapists about these issues, and no one ever mentioned anything about anxiety, autism or OCD. I just got an audiotape describing my favourite place at the time (a ski lift bubble), to help me fall asleep at night. But it didn’t work. Eventually, I started consistently telling myself that nothing bad would happen if I didn’t repeat these actions. After a couple of months, the repetitive actions reduced, and OCD stopped taking over my whole life. However, to this day, these OCD behaviours still affect me during periods of high stress or anxiety.

Adult Life

After leaving school, I moved to London and lived alone in my parent’s flat. At this time, I realised I was on a path of self-discovery and started reading lots of self-help books. I felt strange and knew I wasn’t living in this world the same way everyone else was. 

During my years at university, I became anorexic for a year, developed agoraphobia, and body dysmorphia. Two years into my first job, I developed a drug and alcohol addiction. I later became bulimic, unemployed, on the verge of homelessness, and a victim of sexual assaults.

I always found it strange how I developed so many mental health issues, as I hadn’t heard of anyone else experiencing the same. Each mental health issue lasted months to around a year. I did not receive any medical or psychological support for any of these issues, each time I managed to solve these issues by myself.

I tried to get support from doctors or people around me many times, but I struggled to explain my problems, and no one took my issues seriously. Attempting to help myself, I had booked appointments with doctors, counsellors and alternative health therapists. I was diagnosed with, “something happening to me before I was born”, “not loving myself enough” and “a lack of motherly love”.

At the age of 26, I started to finally get my life back on track with the guidance of a supportive close friend. He encouraged me to sign up to a coding course, and I become excited about my future again. It was an expensive and intensive course that I didn’t want to mess up, and because of my previous mental health issues, I knew it was going to be a challenge. I was tired of ruining my life and the opportunities in front of me. I thought if I don’t sort this out now I’ll have no future. So, I decided it was time to use all my savings and see a private psychiatrist who would finally take my mental health seriously, and make sure I could get through the next few months. 

Starting the diagnosis process

My first appointment was with a general psychiatrist on Harley Street (Although, I later realised he was also an ADHD specialist). I went to him thinking that I had bipolar disorder and would not have been surprised if he had confirmed this. After our one hour appointment, he told me it looks like I may be autistic and have ADHD.

I had high hopes for this appointment but left crying and feeling very upset with his suspected diagnosis. I had no idea what autism or ADHD was, and had not come across it during my online self-diagnosis research. I thought that it could not be possible and that yet another doctor was not taking my mental health seriously.

I started researching about it in more depth and slowly began thinking that he may be onto something. I booked another appointment with him for an ADHD assessment. However, I had a bad experience with him at that appointment and decided to see another psychiatrist. 

I was recommended a mental health clinic specialising in ADHD & Autism Spectrum Disorder in adults. I booked my initial appointment, done through skype, and felt immediately comfortable with the psychiatrist. She was very friendly and reassuring. She booked me in for an ADHD appointment and requested for my parents to fill out a questionnaire. I was diagnosed with ADHD and prescribed medication. 

I had several review appointments with her over a few months, as she wanted to see what issues resolved before going through with the autism assessment. The autism assessment is a more lengthy and expensive process, so it’s usually better to identify other neurodivergence beforehand.

The Autism Assessment

The autism assessment involved three different sessions:

  1. Overview Assessment – The first involved a 3-hour assessment over two days, where I explained all my issues from childhood up until now. 
  2. Autism Diagnostic Interview – The second was between my parents and another psychiatrist. This assessment focused on how you were as a child before the age of twelve. Since, autism is something you are born with, rather than something that developed later in life. Therefore, they are looking for characteristics of autism from a young age. I was worried about this assessment because I got the impression my parents did not want me to be diagnosed with autism. I also did not recognise the general autism characteristics in myself as a child.
  3. Autism Diagnostic Observation – The third was an observational assessment with the second psychiatrist. At this session, you do not discuss your issues. Instead, they are observing your communication, social interaction and imaginative use of materials.

At the final appointment, they provided the report conclusion drawn up by both psychiatrists, and I was diagnosed with Autism spectrum disorder. I got my autism diagnosis eight months after initially suspecting to be autistic and neurodivergent. By this point, I had done extensive research and could fully relate to autistic and ADHD characteristics. I felt happy to have the diagnosis and to have finally figured out why I struggled with so much in my life.

Post Diagnosis

Although I had done extensive research into autism, I still spent the first year being confused about my issues, and how being autistic and neurodivergent affects my life. Unfortunately, I could not carry on with therapy at the clinic where I got diagnosed because it was too expensive. So since then, I have spent a lot of time researching, and it is only now, over one year later that I am starting to understand myself. Fully understanding myself and my place in a neurotypical world will always be a continuous learning curve that will probably never end.

My Identity

My autism and ADHD diagnosis has given me permission to be myself. It now feels acceptable for me to be who I want to be. And, that is ‘different’ from those around me. I stopped masking and trying to fit into the mould that had been created for me by others. I have become more interested in coding, music, advocacy, and causes. I now aspire to be my most unique self, rather than trying to be the same as my Neurotypical friends.

With a long history of detrimental mental health problems, I felt I needed an official diagnosis of some sort. I was desperate and determined to find out what was wrong with me. Once diagnosed, this long journey made me want to adopt autism as my identity. I strongly identify with being autistic and Neurodivergent because, for ten years, I was desperately trying to identify with something that made sense to me.

I have found that those diagnosed earlier in life (as children) may identify less with a diagnosis during adulthood than those diagnosed or discovered as adults. Being diagnosed at a younger age provides us with more opportunity to receive support and protection from situations that may be damaging to our mental health. Being an undiagnosed adult presents different issues to those in childhood, and can cause us to become unusually vulnerable to difficulties. Adulthood, expects us to suddenly take care of ourselves by ourselves, in a world that we cannot naturally navigate, and so we can end up getting in a lot of trouble. We no longer have our family or educational structure to guide and support us. And, we become incapable of supporting ourselves in a society that does not accept us into their work and social environments.

Going through adulthood as an undiagnosed autistic often causes the accumulation and development of complex PTSD. You hear a lot of lately diagnosed adults say, “I wonder what my life would have been if I had been diagnosed earlier on in life?”. Whilst saying this, they often imagine a life without all the accumulated trauma developed over the years.

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