I always struggled but I never knew why. I assumed I was just bad at life and maybe that’s partly true.
Ever since I was in primary school, I have constantly been told that I was doing things wrong. I never really knew why what I was doing was wrong and when I asked I was just told “because that’s not how it’s done”. That for me was always frustrating. I am the type of person who likes to know why I’m doing what I’m doing.
Then, there was the major discomfort I felt being around people. I hated going to school, not because of school itself (I love to learn) but because there were people there and I had nobody around me that I trusted. This was the same right through school, college, university and work. It’s not that I don’t like people, I actually do but I find it really difficult being around people most of the time. I never knew why but I struggled to socialise. When I made an effort to be around people, it often seemed that they didn’t want to be around me. I made them uncomfortable with the things I said or did. I wish someone could have told me that this was the case at the time – that might have saved me a hell of a lot of trouble.
As I progressed through the education system the problems got worse. By the time I was at university I found myself unable to attend on a regular basis. I was pretty much becoming a hermit because I started feeling exhausted every time I was around people. I couldn’t focus because I was distracted by every sound, every movement, everything.
One breakthrough happened at this time though, I found out about part of my condition during a routine eye test. My optician had asked me to read a paragraph from a card and he could see that I was struggling. He knew this didn’t make sense in terms of the eye test, my vision wasn’t perfect but it was good enough that I should have been able to read the text at the size it was printed. He started asking me questions about my reading ability and I told him that it was something I’d always struggled with. I told him that I don’t absorb written information easily and that I find myself skipping lines, sometimes in the middle of a line or rereading a line. I explained to him that my writing was also very untidy, to the extent that a teacher in primary school made me erase three pages of work and rewrite it. I also explained to him that during a college course I had to read a law report which was 4 A4 pages and that when my fellow students had finished I was just at the bottom of the first page.
Thanks to this optician’s advice, I went to the Disability Services department of the university and asked them for an appointment with an educational psychologist. This was a massive help! I got the appointment, did the tests and found out that I am dyslexic. It was a huge shock. To be diagnosed with something like that in your thirties after so many struggles is a bigger deal than I can explain. It did help though, the university arranged extra time for assessments, offered me separate accommodation for exams and extensions on deadlines.
That was such a relief but I was still having problems just being there. At home, the work was being and submitted by email on time. My attendance was suffering though, to the point that I was removed from one of my classes. Thankfully, with the backing of my GP and the fact that I had completed all my coursework to an acceptable standard and even passed the final exam they decided (with the intervention of the Scottish Public Services Ombudsman) to reverse their decision.
I would like to go back a bit to my first job. I started that job when I was sixteen years old. I loved the job but had so many issues. I found that I couldn’t cope a lot of the time and I was being reprimanded for stupid mistakes. Nobody else seemed to have issues so as always I was feeling like I was the problem. Why couldn’t I just manage like everyone else could.
I got so bad that my partner at the time told me to go to the doctor which I did. The doctor diagnosed me with depression. He offered me a sick note so that I could take some time off and rest but I refused. He prescribed me antidepressants and referred me to a counsellor. I dutifully swallowed the pills and sat through numerous uncomfortable talking sessions. My life continued to get worse. The antidepressants didn’t seem to help so my GP prescribed me another kind and then another. I can’t even remember how many types I tried but none of them made me feel any better. I hated the counselling sessions because they didn’t seem to achieve anything and I just found them awkward. I couldn’t explain what was wrong and the counsellor couldn’t work it out from what I was saying.
I got to the stage where I had to take some time off of work. I just couldn’t cope anymore. I was suicidal. I actually tried to end my life. When I returned to work I was called into my manager’s office. Throughout my time off, she had been so supportive and when I returned, this continued. My manager offered to be there for me any time I needed to talk and she referred me to another counselling service. This time, a CBT counsellor. This counsellor quickly dismissed me; apparently I was fine. I was not, nothing had changed.
Fast forward a bit and I’m now well over thirty years on the planet. Things have gotten much worse. Having somehow managed to gain a degree and hold down three long term jobs, now I can barely even leave my house. I find the outside world absolutely terrifying. There is far more noise than I can cope with, everything is completely overwhelming, the sights, the sounds and the smells; everybody sounds and looks to me like they’re angry and I’m getting funny looks from people without knowing why. I need to know what this is all about, why life has been so tricky and why it’s getting worse.
I started to research. One of my jobs was in science, I am very good at research. I realised something that was, in hindsight, so glaringly obvious that I don’t know how I missed it. I’m autistic. As soon as I said it out loud for the first time I felt an overwhelming sense of relief, of belonging. Suddenly, all of the pieces seemed to fit together. The reason why I feel depressed is because I can’t cope with life and the reason why I can’t cope with life is because I have a neurological condition.
I contacted a doctor and asked her to refer me. I didn’t know to whom I needed to be referred and apparently neither did the doctor. She told me that I had to contact a mental health charity in my area which I knew was wrong. I have had dealings with said charity and I know what they do but I sent them an email anyway. They pointed me in the right direction. They gave me the name of the service to which I needed a referral and I contacted my GP surgery again with this information.
Time passed and I received a letter from my autism diagnostician. Again, another wave of relief washed over me. Finally, an appointment, something to look forward to. The letter had a questionnaire for me to complete, it was asking to what extent some symptoms affected me. All were answered truthfully and all except one had a severe impact on my life.
On the day of my telephone (screener) appointment, my diagnostician phoned. She asked me a load of questions, some of them I answered with ease and some I found much more difficult because of the wording. My poor diagnostician found that call difficult. She could not keep up with me and had to repeatedly ask me to slow down so that she could type my answers into her computer. She quickly found out that I waffle when I’m nervous.
By the end of the phone call, I was asked which type of diagnosis I would like. The question confused me and it was explained that they can carry out a diagnosis involving a patient only or by also speaking to the parents of the patient. I opted not to involve my mum. I don’t know that she would know how to answer questions, she’s one of those mums who doesn’t like to think there’s anything “wrong” with her children – or so I thought. When I actually spoke to my mum she said that she didn’t remember much that would help but she was really understanding and supportive regardless. When I started talking to her about my childhood she started to remember but said that she hadn’t really thought of things as issues, just me being a child.
Whilst asking about the things I struggle with, my diagnostician asked if I’d sought for help from the DWP. She said that as my issues were affecting my ability to live an independent life that I should consider applying for PIP (Personal Independence Payment). I told her that I had applied for this a few years ago but had been rejected. Apparently not being able to leave your home by yourself (and even sometimes with another person) because you can’t cope with the world isn’t a disability. She told me that the rules had changed and advised me to apply again. I did and after waiting for around 6 months had the phone interview. When I received the assessor’s report I was absolutely horrified, it was full of lies and speculation.
Everything I said had been misinterpreted or disregarded and I scored 0 points. Despite the DWP stating that having a diagnosis isn’t important, claims are awarded based on the impact your condition has on your life, they mentioned the fact that I didn’t have an official diagnosis, why? They apparently still don’t see not being able to leave your house as a disability. It’s absolutely absurd and it made me feel completely worthless. I have since asked for mandatory reconsideration and received acknowledgement that they’ve received my form. I’ve also been in touch with a legal advisor who has said they’d be happy to take on my case. I just wish I’d asked them in the first place. I am absolutely determined to fight this. I will not let them get away with treating me in such a throwaway manner. I may write another article about the whole DWP situation in the near future.
Anyway, I digress. Following my phone screener, I received a letter telling me that I was on the waiting list and that I would hear from them in time. I am still waiting but I decided that in the meantime I would discuss my situation with friends and family. I did the thing I usually hate other people doing; I posted on Facebook. I explained what was happening, about the phone call and my findings. All of a sudden people had things to say. I found out the truth about how my friends see me. It wasn’t negative per se but I wish they’d said these things much sooner.
Several of them referred to my “uniqueness” or “madness” and recounted ways in which they love me because I’m “different”. I know these things sound negative but I don’t see them like that. I know that people don’t know how to word things in this sort of situation. Then, when speaking with my sister, I learned of her observations. Apparently I’ve always been quite antisocial and intolerant of pointless chatter. She told me that when I was a child I would always choose the company of adults over other children. I spent a lot of time by myself – this I know to be true. Partly because I only wanted to spend time with people on my terms so I would walk around with headphones on and partly because (as I now know) other kids found it difficult to relate to me.
One of my very good friends, upon hearing my news, told me that he’d just always thought of me as ‘eccentric’. I worked with this friend for roughly five years and have been socialising with him for longer. He knows me pretty well, he thinks I’m funny (even when I’m not trying to be) and knows how depressed I get. I value his opinion but again wish he’d shared it much sooner.
So, this is my story, well part of it anyway. It feels good but also terrifying to share it. Since starting to pursue diagnosis, I have realised that I’m not a freak, that there are other people out there who have similar issues to me and that being different isn’t such a bad thing. Now, all I need to learn is how the hell do I deal with it. I’m sure that will come after I’m officially diagnosed.
Thank you for reading this. I hope you found it useful or insightful or something and that the disorganised rabble that is my mind didn’t make it too painful for you. If there’s anything specific you’d like to know about my situation, please leave a comment.