My journey so far

I haven’t gotten round to highlighting the journey that has gotten me to this point. The journey that has brought me to Autism. The journey I continue to travel.

I have struggled my whole life with symptoms of mental health problems. As a child I was described as weird, highly intelligent, an introvert who didn’t stop talking and these are just the way my own parent describes me. But this was just me, this was just the way I was as a child. A lot of pointers screaming YOUR CHILD HAS AUTISM!!!! but, back then in the 80s, girls didn’t have autism so I was just a weird bookworm type that my mum never fully understood (as a sporty person she never understood my want to sit and read or watch the same film everyday but just took it as I was more of an intellect type).

As I became an adult I was more aware of my own mental health, that my thoughts and feelings were strange in comparison to the rest of society. Mental health was starting to become a big deal that was spoken about more but there was also a lot of people taking advantage of that at the time as well. There seemed to be a reluctance to diagnose mental health issues due to an influx of people faking symptoms simply to avoid having to work (originally it was faking bad backs, pain or other injuries but the government had started clamping down on these sorts of things but it’s harder to disprove mental health problems, such as depression, and sort out the fakes from people really needing help).

In my early 20’s I decided to talk to my gp and try and get help. After telling the gp how I felt he decided counselling was the best course of action. At this time I had nearly lost my brother to a serious accident so those feelings were what the counselling focused and not the previous 20-something years of thoughts and feelings. After sessions were she fell asleep while I was talking or cancelling due to her own illness the allotted amount of sessions was over, I had no diagnosis or clear idea of what was wrong, I simply felt a little better for chipping away at a small aspect of problems I needed to work through. My gp then wouldn’t refer me to any other department without a ‘good enough reason’ even though I had previously told him I no longer wanted to be alive, I didn’t know what happiness was and was completely lost in my own life. I unfortunately had been failed by the healthcare system and I gave up pursuing this avenue.

A few years later everything got too much for me to handle again so I built up the courage to talk to my gp, this time a different gp who I trusted. He was extremely helpful. He immediately referred me to an out patient mental health department and gave me tablets to help me get through the day. That is, unfortunately, were the positives of this section of the story ends. Speaking to someone assessing me I was told that I don’t really have enough symptoms for what they tend to look for (at the time that was simply depression, the more common form of bi-polar and schizophrenia) but was given pills to try anyway. Various different forms of pills obviously didn’t work for me and I was also referred to CBT. The ending diagnosis was that I suffered with ‘low mood’ *queue the eye-rolling*. This seemed to be the new term so as not diagnose people with an actual ailment so they didn’t require help or to be out of work. I will add at this point that throughout all this I worked either part time or full time and was rarely ever out of work and only once out of work due to ill health.

Again, I gave up. I lost my will to fight to find out what was wrong with me. Especially after various professionals in the mental health field telling me there is nothing wrong with me. But I know my own mind and I did eventually find the strength to fight again.

By this time I’m in my early 30’s, I’ve battled my own mind and feelings in an adult world for over a decade with little to no help. But I decided to fight. I spoke to my then partner who told me he thought that I have autistic tendencies and maybe that would be something to explore. I had never even considered the possibility and the idea did actually scare me. The idea of having a mental illness meant that there would be good days, there would be days were I could escape it and think and feel ‘normal’ but being autistic meant there would be no escape, I would struggle every day and it would never go away. I felt like I would be haunted by own mind and emotions forever. But I decided to fight anyway.

October 2017 I rang my gp and explained how I was struggling with my mental health and really needed help. November was the earliest appointment I could get. November came and I spoke to the dr and she contacted a specialist department for me. December came and I finally heard back, I had to fill out an assessment form and book another appointment. Next appointment available not until January. Three months and I had barely got my foot in the door and I could feel the fight slipping away from me. When the appointment came I watched as the doctor read the sheet wrong and marked the answer wrong. I was devastated, knowing instantly I wasn’t going to be taken seriously again. To score on the scale you need a minimum of 32 and I was scored 23. I wanted to go home and cry but knew I couldn’t give up, that I may never have this fight left in me again so I went to the receptionist and explained I wanted to see another doctor and another appointment was booked for a couple of weeks, I redid the assessment and I scored 42. I can not begin the describe the weight that lifted off my shoulders and the feeling of elation that I was finally going to receive help.

And then the waiting began.

I received my letter from the specialist department in May 2018 informing me I was on the waiting list and the average wait was 13 months!!! 13 months!!! I was shocked but I told myself I had waited all my life, I can hold on a little longer.

It’s now August 2019, 15 months later, and I still don’t have my appointment for full assessment yet and this is why I started this blog. In those 15 months I have been given no help from any department despite being back to get tablets as I was no longer coping with everyday life. I looked at the NAS website to see that I can’t receiev help from them without a diagnosis. I have found nowhere I can turn to for help, support or balance in my life. Nowhere but here. I find that wrong and I would like to raise more awareness that there are adults out there who are struggling every day with nowhee to turn to. Once you are past 18 you’re an adult so you must know how to cope by now, surely! You’re an adult, act like one! Unfortunately, with a brain like mine or the way that I am wired (which is how I like to describe it) I can’t cope, I know how to act like an adult but I don’t know how to be one.

There needs to be more help available for those of us stuck in the purapgatory of awaiting diagnosis.

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Author: AdultsWithAustism

I decided I wanted to do something positive with my life and speak out about what it feels like to be an adult with autism.

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