17th April 2018 is a date I won’t forget in a hurry. Aged 52, almost 2 years after I first spoke to my GP about autism, and several questionnaires later, this was the day of my assessment. Did I think I was autistic? Didn’t really know enough about it, I guess I wondered but definitely didn’t go in expecting it. I recognised I had some struggles but doesn’t everyone? Work wise, I had 18 years in the NHS and 14 years in Local Government, mostly at management level, more recently having done ILM5 in Leadership and beginning to accept that I was pretty OK at leading people – that didn’t sound like anything I’d heard about autism! Anyway, how could you not know something like that? However, my wife and a colleague had raised the question (although tbh I thought my wife was joking!) so eventually I mentioned it to my GP and here I was, about to be assessed.
The day didn’t start too well. Ironically, for an autism assessment appointment, no directions had been included but having been to the site for work meetings and knowing there were good site maps I assumed it would be easy to find. Wrong! Being late is not acceptable to me so the longer we walked around the site the more stressful it became, especially encountering staff who looked blankly at the mention of the autism service. Fortunately my wife had the presence of mind to Google and solve the mystery. However, to my horror we arrived at the staff entrance….so I walked away, but she was determined we were going to be let in – and we were. In retrospect I love how straight faced the assessor was on hearing the very detailed explanation for why I was stressed on arrival!
The assessment started with the Clinical Psychologist, included a Speech & Language Therapist and lasted all day. Lots of questions, tasks and a story book with no words…I was to provide the story based on the pictures. Let’s just say that bit didn’t go well!
By the end we were both exhausted and could barely speak on the drive home. What was our prize? The news that I am autistic, specifically Autistic Spectrum Disorder, Level 1 support needs, previously Aspergers – sounds lovely doesn’t it (that was sarcasm, but apparently we don’t ‘do’ sarcasm so don’t tell anyone!). Although my knowledge about autism was limited I wasn’t shocked but to be honest I don’t think it really sank in. I’ve since realised that information I’d come across was probably full of stereotypes. I’d even done the ASDInfoWales online training and yet it didn’t ring any bells – maybe it was full of stereotypes or maybe it just all seemed so ‘normal’!
When my diagnosis report arrived I was intrigued but found it really difficult and itchy to read. It sounded like me and yet it really didn’t. Seeing myself through a professionals eye, realising how different I sound to the way I see myself was pretty uncomfortable. It’s all about things I do differently that, to me, makes it sound like I do them wrong, abnormally. I have looked at it a few times but every time it makes me anxious so that I struggle to read the full report. Quite a few things have me scratching my head over what I said on the day that led to some of their comments, which specific scenarios we were talking about where that behaviour might be true but which has now become a blanket statement about me.
I’m more accepting now that a diagnosis includes having ‘support needs’ but I’m learning that it is more about how I view support needs and that being autistic means my operating system works differently so sometimes a bit of help is needed (still working on accepting that help though!). I’m still getting used to the ‘disability’ tag – just another mindset thing I guess. I usually ‘function’ in a way that means most people probably won’t realise I’m on the spectrum but sometimes I find things hard that, on the face of it, seem easy for most people. I hate the ‘high functioning’ label that is still sometimes used – it means someone else gets labelled ‘low functioning’ which is just not right and neither label reflects the person properly. It doesn’t take in to account the apparent randomness of things I struggle with that usually relate to context or environment rather than a permanent state. I’ve learned how much harm that label can cause to people who need support but can’t get it.
A few weeks later we went to a post diagnostic counselling session. Fortunately in Wales, unlike nearly everywhere else in the UK/world it seems, there is a national Integrated Autism Service (IAS) so I had great post diagnosis support from a Psychologist who helped keep me together as I felt myself unraveling despite my initial determination that autism was no big deal. I had no idea how to ‘do’ counselling or what the next few months would bring in terms of me processing my diagnosis. Having never talked to anyone about anything difficult, worrying, troubling etc in my life it was a strange experience to meet someone for the sole purpose of talking about what was going on with me! It would be fair to say it did not come naturally! My inbuilt safety valve, which stops my thoughts coming out, was seriously challenged. However, I did discover that I find it easier to ‘talk’ about hard stuff when I write it down rather than relying solely on myself in conversation. (Thinking back, I came out to mum and dad by letter!). Not sure if the Psychologist came to dread my iPad but she didn’t make it seem like a strange way to start a conversation. I arrived at one session really not knowing which way was up, having been thrown by a few things that normally would probably have been no big deal, but which meant I felt pretty screwed up about life stuff. However, an hour with her and I left feeling that the reset button had been pressed and I was ready to try again. I’ve also acknowledged to myself that I really am not able to ask for help, however big or small the issue, so if I hadn’t had access to that support it would have been much tougher to get through – how anyone copes when they need post diagnostic support but don’t get it I don’t know. Even with support, my head went to very bleak places on occasions so I can completely understand when people who get no support struggle to cope and think that they can’t go on.
Every journey is different and starts from a different place. If anyone had tried to describe what may lie ahead it just wouldn’t have begun to prepare me for the reality. Initially I was pretty laid back about it and my wife took the view that we had a brilliant chance to get to grips with some of our communication issues that had arisen in the previous two or three years. However, at some point, 2 or 3 months in, it started to go a bit wrong for me. It was as if a bomb had gone off in my head – I’d missed the actual explosion but I was now wading around in a mass of debris in my head. Why? Diagnosis makes you reflect on your life, trying to make sense of a lifetime of not really feeling that you fit, feeling different, trying to blend in and not let yourself stand out in case someone realises you’re a misfit, never being sure why you felt that way and yet assuming that everyone must feel the same but deals with it better than you. The self analysis was constant and exhausting and no matter how much I tried to stop the thoughts or reason things away, it was like a runaway train that wouldn’t stop until it had run it’s course – hours, days or weeks later. Autism just seemed to swallow me whole and wouldn’t let go. I got to a place of feeling ‘broken’, believing I’d never be ‘fixed’ because autism sounded really negative, a disorder full of deficits and things I apparently couldn’t do. My sleep has been hugely affected, I was completely overwhelmed trying to process it all and really wasn’t doing anything other than reflecting and analysing, going to bed, getting up and doing it all over again. I just didn’t have the energy or focus for anything else, whether household chores or fun stuff. I don’t feel fully back to ‘me’ – whoever that is – but I guess that’s just a time thing. I no longer feel that I’m broken, just that I operate differently and am learning what that means for me and those around me.
One of the Psychologist’s questions, before my first week away for a course I’d just signed up to, was about self-care, to which my head just went “what on Earth is self-care what are you talking about how on earth am I going to answer this?”. Out of nowhere I grabbed “music”, thinking ‘now she’ll know I’ve lost the plot’. But no, that seemed ok and I agreed to download some music and take a speaker; turns out having music with me was the key thing that got me through that week and back in love with listening to music regularly. My anxiety was massive whilst I was away (although I didn’t realise what it was at the time) and I hardly slept all week but music definitely helped and I’ve not stopped listening to it since. The busier my head, the louder the music!
[Continued in Part 2]
One thought on “Part 1: One year on”
Wow this is all so brave of you Suze. Keep on keeping on! (This is Jean by the way, Scally was my horse- she had a blog for a while) 😉 xxx
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