Undiagnosed Autism

– Broken – Worthless – Unlikeable – A Failing Human Being – Stupid – Weird – Different – Strange –

Most people don’t get it, they have no idea what autism is or what it feels like, but it isn’t really their fault. In all honesty, I was one of these people. I thought I knew what autism was because my Nephew was diagnosed autistic at a young age, I watched him grow up, but I was wrong, very wrong. I am ashamed to say I didn’t look into it any further than that. That is until it was suggested to me that I was autistic by a therapist. Unless autism comes into your life, whether thats through having a child with autism or working with children, you probably had no need to look into it to much.

Autism had never been on my radar, not with regards to myself at least. In 2019/2020 I referred myself for therapy with the local NHS service, I was really struggling with the school run and being around people in general, my daughter was under the hospital and her school was not listening to me, my daughter was also coming up to the age I was when the sexul abuse I experienced began, and I broke. I didn’t realise it at the time but I believe I was experiencing autistic burnout and a trauma response; at that point I seemed to lose a lot of my abilities, coping stratagies, some of which haven’t returned, and was really struggling with life. By the time I reached the top of the waiting list the Covid-19 pandemic had just started to take hold, which meant that all there was available to me was an online Social Anxiety group. Normally I would have turned something like that down, but I was really struggling, so I accepted. I did enjoy the group and gained a lot from it, although it was a little awkward as I had never attended anything like that before, especially online. The information supplied with the group was really interesting. During one session I mentioned something to the therapist and he arranged a 1:1 session (online), and then arranged for some 1:1 therapy after the group had ended. During one of those sessions he diagnosed PTSD, which he believed I had been battling with since I was a child, then a couple os session lessons later he asked me if I thought I could be autistic. At this point I wasn’t sure, the only knowledge I had of autism was seeing my nephew grow up and I wasn’t like my nephew, so he sent me links to information and suggested a book to read. Spectrum Women – Walking to the beat of Autism. It was like reading about my life, for the first time ever I saw myself, there was no doubt after that. I was autistic. I am autistic.

Growing up and living as an undiagnosed autistic person is hard, you know that you are different, and your peers know that you are different, and it has a huge impact on your mental health. As a child I believed I was broken, a failing human being, it felt as though I had been sent from a distant planet to observe and learn the ways of the inhabitants of earth. But, there were no instructions on how I was meant to do this, how I was meant to blend in. In an effort to “Fix” myself I bought my first self-help book at the age of 12. My collection of books grew quite large, but not one of them fixed me or answered my questions, I still have them in a plastic storage box under my bed. Over the years I have had counselling and CBT therapy many many times, which seems to be a common theme for undiagnosed autistic people. Therapy in the past has been in an attempt to “fix” the parts of me that I believed were broken and for anxiety and depression. So it didn’t work in the way I was expecting; once I realised I was autistic, I understood that I was trying to fix something that wasn’t broken in the first place. Also, I had PTSD, Autistic Burnout and anxiety associated to being autistic, which meant that traditional means wouldn’t work in the same way and a different approach was needed. The therapist started to adapt the therapy once he realised I was autistic.

Being different makes it difficult to fit-in, it can be such a lonely situation to be in. It annoys me when people say “parents are quick to label their children these days,” autism isn’t a label, its a different neurology and a diagnosis. Children are given labels when they are not diagnosed, but these are less kind, some of mine were from teachers, family members, strangers, friends and in some cases even myself:

• Rude
• A loner
• Weird
• Too Sensitive
• Attention Seeker
• Shy
• Difficult
• A hypochondriac
• Stupid
• unlikable
• Lazy

A loner was written in my school report during my time at the last school. That one hurt the most, partly because it was in writing, and partly because it wasn’t through a lack of trying. I tried so hard to make friends and to fit-in, but I always managed to fail; I hated that school report. The truth is though, that brutally honest school report, helped towards reaching a decision for my diagnosis.

Another thing that was mentioned in a school report was my tutor saying she wished I would talk to her. I didn’t know how, I didn’t have the knowledge or words to explain what was going on, and I didn’t understand what was causing the need to escape the classroom. The need to escape was so strong; I spent most of the school day in a constant state of anxiety, there were times I would go into a panic and would find any excuse to leave the classroom. I spent a large portion of the last 3 years of school in the library, medical room, or at home. Apparently, the school years are meant to be the best years of your life, but for me and many other autistic people, school was hell. School is designed to be a one-size-fits-all environment, but it isn’t suitable for some people.

It is important to understand what autism is and what it means for you, which is why it was so important to me for my daughter to have her diagnosis as early as possible, she has known about autism from the moment I realised she was autistic too. We discuss it openly, because I feel the more knowledge you have the better equipped you will be. I had no idea why I dreaded school so much, the thought of returning after the school holidays made me feel so unwell, so much so I ended up with extra days off because it made me ill. I had no idea why I was in a constant state of anxiety and that terrified me, “what is wrong with me“. I didn’t understand how much of my anxiety was related to sensory sensitivities, how the lighting, smell or noise would become to much and trigger panic because I couldn’t cope with it. No one else appeared to be struggling with it.

My experience of work was much like my time at school because I left with low grades, I believed factory work was all that was available to me. Factories are a sensory nightmare, especially when you don’t know that is one of the triggers, it would cause me to become constantly stressed and anxious. Meaning I struggled with people; because of the background noise, I struggled to hear the person talking to me and they would get frustrated because I struggled with eye contact which would frustrate people as well because they thought I wasn’t paying attention. And, because I was stressed and anxious constantly and unknowingly masking, I experienced episodes of severe depression (Autistic Burnout) and was overwhelmed. There were times I was signed off, much to the annoyance of the employers, and when it was too much I would end up walking out because I couldn’t cope any longer.

The damage to my self-worth and mental health was extensive, I felt as though there was something drastically wrong with me, why couldn’t I do what everyone else was doing. I hated myself for it. I experienced suicidal thoughts. I felt worthless and a burden to the people around me. My diagnosis gave me a greater understanding of myself, it has enabled me to cut myself some slack, and to realise that I am not broken.

I am still learning what autism is for me and the impact sensory processing disorder has on me, I am still learning who I am underneath the mask. I am trying to learn how to manage my mental health better as well; home is my safe place, and leaving home is anxiety-triggering and for a while, I have only left home when absolutely necessary. I am trying to connect with the community more, leave the house more, and look for a job, but it isn’t easy, especially when experiencing constant anxiety and burnout through pushing myself more. I looked for some support, but there really is very little out there.