Autism and me, the diagnosis

Having accepted the cancelled appointment mentioned in my previous blog the terror and fear set in about attending, it was probably a good thing I only had 24 hours to mull it over. I had no idea what to expect as I’d intentionally not done any reading beforehand. I was too worried about finding the location and getting there on time to go it alone, so I had to ask my Mum to take me. 33 years old and I can’t stand on my own two feet. I sat in the waiting room with my Mum mentally picking apart the notices on the wall, old and out of date they looked scruffy and out of order. The appointment was with 2 people, which was scary. I don’t like being the focus of attention, and just one person is bad enough. I felt as if I was in a bad game show whilst they fired questions at me. I became annoyed when they asked me questions which I had already answered in the pre assessment questionnaire. I am a strong believer in efficiency and get annoyed when I perceive others aren’t following suite. I found it hard to focus on their questions as I was being distracted with long tailed tit birds flying around outside the window and the ticking clock in the room which seemed to get louder by the second.

When we moved onto the activities I was convinced I’d have no trouble with them, but as I felt like I failed each one I became embarrassed. I couldn’t make up a story from the picture book at all, all I could do was describe what was in the picture. I commented that if I’d been given the book in advance and a pen and paper I could have constructed something. I failed to identify the country pictured in a cartoon map I was shown and struggled making up a story from objects, as I could only seen them as the objects that they were.One particular request I just couldn’t do and it took me back to that feeling of being overwhelmed at school when the request to do something seemed unimaginable.

After it ended I had to go back to work and I remember how overwhelming it felt, the questioning had felt personal and intrusive. The small talk annoying and exhausting. I felt like I’d done a bad job. At home I retreated into myself. The next stage of the process was for them to speak to my Mum which they did the following week. It was then my turn to return. I wasn’t sure what would happen in the second appointment and I was sure they would tell me I was wasting their time. They’d changed one of the assessors which made me feel uncomfortable. I got to the point where I could no longer tolerate the ticking clock and they thankfully took out the battery. Again, it felt like an interrogation and I was incredibly anxious. Once we’d completed the questions which were around special interests and sensory sensitivity they asked me to step out whilst they discussed me. I’d never really acknowledged any particular sensory sensitivity, but going  through therapy did make me realise that my reaction to noise is out of proportion and similarly for smell. When you start to total up all the times I’ve over reacted to noise you’d have a really long list. It’s strange how we just accept some things as being the same for everyone without question. I can’t just see things from someone elses point of view.

When they returned they said I was on the Autism Spectrum, they asked how I felt about this, I wasn’t really sure, it wasn’t what I’d been expecting. The obvious question would be where about’s? They said that previously I would have been classed as having Asperger’s, but this is no longer a classification. I asked when I would get the information/report, they said a months time. They explained there is a post diagnostic support group which runs 6 sessions, waiting time for this is 2 months. The group is during the day time which makes it difficult for my employment. As mentioned previously I don’t like to let people down, and taking time out of work will make me feel guilty and awkward. They went through all the other support, it was all during the day. My sense of injustice flared up as it always does, and I questioned why there was no evening or weekend support. I think they were annoyed with me at this point and just wanted me out of the room. The obvious answer is funding, although I can’t see why you couldn’t just run some things at the weekend instead of during weekend hours. I headed back out into the open with my Mum feeling confused and not really sure how to process the information, a couple of brief leaflets my only guidance.

All at sea

I desperately wanted to talk to the few people I know about the decision, but when I’d mentioned the assessment to people previously they thought it was all a big joke – comments ranging from ‘but you make really good eye contact when you speak to me’ (I don’t. I’ve just got very good at ‘faking it’ ie looking to the right /left of someone over 33 years of practice. Another comment from someone was ‘I just can’t see it in you’ . And so I am left feeling like a fraud, maybe I could have tried harder at the tests, maybe they got it wrong, maybe the people who assessed me weren’t qualified enough? There’s also the worry of how I move forwards, I’ve felt for years that the things I have difficulty with are trapping me in situations, it feels quite final to be told it’s simply part of the way I am. In a way I wish they had sent me away without a decision after the appointment and not said anything until they could send me the report in writing and to the group straight away. That way perhaps I would feel less at sea without a paddle?

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