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Starting from the middle

Knowing where to start

Tadpoles at Binsted

To mark our first blog post, I thought it would be good to start from the beginning, that is, to write about my experience of receiving an autism diagnosis. However, like a lot of Aspies, I had to wait to be diagnosed. Some of the reasons for this included that:

  • I wasn’t aware of the condition until I had reached my mid-twenties;

  • I wasn’t aware that I qualified for the condition; and

  • I didn’t know how to access the diagnostic service.

Consequently, whilst I’ve always been autistic, I’ve only been aware of it for the past 4 years. As such, my life began for the second time once I received the diagnosis, so essentially I was starting from the middle.


Becoming aware

I first heard the term Asperger’s Syndrome when talking to my mum, who was a SEN (special educational needs) learning support assistant. She used to talk about the children she supported at work, many of whom had learning difficulties or exhibited destructive behaviour, but none of that really registered with me; it didn’t really seem like it was relevant to the person I was, either at the time, or prior to it. By this stage (it was around 2008), I had graduated from university but had little success obtaining and keeping full-time work. When I worked I found it completely exhausting, and had little energy to do anything other than lie on my bed at the weekend. I felt like I was always trying to make it to the end of the day; trying to keep up with my peers whilst still processing all that had gone on before. In short, I was always playing catch-up but I didn’t know why. I spent hours pacing in the garden at night; I just couldn’t switch off no matter what I did.

This process continued unabated until January 2011, which is when I started therapy for anger and depression. Therapy enabled me to recognise just how anxious I am; that I don’t like being touched and feel really uncomfortable in my skin. I became more sentient, both of myself and my surroundings, and arrived at the conclusion that this wasn’t just a phase I was going through. It was at this point that Mum stated that she thought I had Asperger’s Syndrome, but I didn’t think much about it at this point; I talked through the possibility of getting diagnosis with my therapist, but she said that I should continue with the CBT.

Turning point

It wasn’t until things became unbearable for me that I decided to pursue a diagnosis. In the space of eight months I lost my job, cancer killed my mother, and I was discharged from therapy (in that order). My life had no purpose or sense of direction; I was tired, confused, and losing weight. Immediately after my last therapy session I remember staring out at the English Channel – the waves gently cascading over one another – and it was at this point that I decided that I needed a diagnosis. I spent a few minutes trying to reconcile my thoughts with my feelings, before walking home and phoning my GP to make an appointment. In retrospect this might have been the turning point for me. I explained my situation to the GP, whom said that I had given him “…a lot of information”. Since at this point he hadn’t received a discharge letter from my therapist, he couldn’t refer me to the Autistic Spectrum Conditions Service (ASCS). Nine months had passed by the time I received an appointment, during which time I had tried several strategies to improve my mental health, with varied results (more on that in a later post).

The Assessment

The day of my assessment finally came around and, as is quite usual for me in uncertain situations, my navel was trying to fuse with my spine. I had established contact with the ASCS Specialist Practitioner whom would be assessing me, which helped to an extent, but I was still excessively anxious; it felt as if my life had been centred around this appointment for the best part of a year. The assessment was being held at the site of my therapy, which didn’t help. Despite the inclement weather conditions synonymous with British springtime, the clinician asked if I would feel more comfortable outside, which helped. Overall, I found the assessment quite invasive and confusing, but she appeared to understand my difficulties and made allowances for them. At the end of the interview the clinician declared that, whilst she still needed to meet with my dad, she believed that I had Asperger’s. The relief for me was immense; I remember that I took a nap later that day and it was the best I had slept in ages!

Moving Forward

One of the questions I get asked about my Asperger’s diagnosis is: “Has it made a difference?”

To cryptically answer this question, I’d say that it has and it hasn’t. On the one hand, it has allowed me to view myself from a different perspective; one that is more understanding of the difficulties I face and more forgiving when I make mistakes. It has given me a locus of identity – a focal point – from which to view the world that isn’t reliant on the thoughts and opinions of others. I no longer worry about trying to be something I’m not. Instead, I’m now focused on who I am and who I want to be, although I’m still unsure about that! One the other, it hasn’t allowed me to access any services which have improved my situation because I’m too “high-functioning”, whatever that means (the danger of labelling could be another topic for future discussion)…

Essentially I’m still the same person, genetically at least, so it hasn’t really made a physical difference. That said, it has enabled me to reflect upon my life and put my memories into a more coherent perspective; it has facilitated me to learn about myself with a view to moving forward with my life, a process that is on-going.

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