Part 2: What’s in a diagnosis?!

So, whilst only having a very limited knowledge of autism, diagnosis started to feel right, it helped to explain why I had struggled to understand where I fit in and had tried to keep a low profile, not stand out. In my late teens and early twenties I was coming out as gay – to myself and selected people. Initially it truly felt as though I was the only gay person in Oxford until I went to my first gay club – it was like coming home or finding my tribe. It just felt so natural and comfortable, life made much more sense. I always attributed my sense of feeling ‘different’ to being gay because back then I’d never heard of autism (who had?!) and it wasn’t always an overly gay friendly world – knowing that you could be verbally or physically assaulted for looking gay or being assumed to be gay (fortunately I only ever experienced verbal assaults), men who thought it was OK to expect to come home with you and your girlfriend for some fun (really not getting the whole ‘we like women’ thing!), knowing you could be sacked just for being gay if that suited your boss/employer. Against that backdrop there was a sense of belonging to the gay community and yet I could still feel like an outsider, even there. On her first night on the scene, I met someone who became a great friend and we remained so, even moving to Wales within about a year of each other, both of us following the women in our lives! A funny thing about the autism diagnosis is that I completely forget now, when meeting new people, that it was being gay that I’ve always had to choose to hide or come out about. Now the elephant in the room (well, in my head) is autism and whether I want or need to tell people.

So, maybe I’d now found the beginnings of an answer to why I felt like I didn’t quite fit and why some things didn’t seem as easy or straightforward for me. Initially a lot of the information I came across was in ‘medical’ and ‘diagnostic’ language which is focused on disorder, deficit and things autistic people can’t do (or are supposed not to be able to do!). Then I discovered #ActuallyAutistic – the hashtag used exclusively by autistic people – autistic advocates and people telling their own stories. Then there are the increasing number of books written by autistic women, initially Rudy Simone/Artemisia and more recently “Spectrum Women: walking to the beat of autism” @SpectrumWomen – these opened up a world of more positive information, outlooks on autistic life and better language – e.g. difference not deficit. So many people sharing their stories and everyday experiences that were so relatable, gradually you realise you’re not ‘weird’, just autistic; experienced advocates challenging false and/or outdated information and educating with good information and personal accounts. Being exposed to positive language means becoming more positive and kinder to yourself. I started feeling it might be OK to go a bit easier on myself!

At the time of my diagnosis I was struggling in my job with a tiny third sector organisation, having spent 30+ successful years in the public sector. I came to realise that the structure that worked for me just wasn’t going to happen there so, after discussion with the Trustees, I left, feeling as though I’d failed myself and them. The next few months were filled with near constant self doubt, anxiety, reflection over my life to try to make sense of things and trying to understand myself as an autistic person and what this meant for my relationships – especially with my wife. Oh, and amongst all that I recklessly signed up to the Victoria Stilwell Dog Training course! Had I realised the total lack of focus, the unbelievable anxiety, the self doubt and zero self confidence that I would experience as I tried to get to know myself anew I would never have signed up – several times I came so close to giving up on it. However, having your wife, family and Psychologist telling you that you can do it (misguidedly I believed!) and them believing in you far more than you do yourself seems to have worked. Despite learning how rubbish my Executive Function is when left to my own devices, being totally stressed and utterly despondent about creating 4 videos as part of the final assessment, getting distraught whilst filming two of them and ‘knowing’ for certain that I would fail….remarkably I graduated with distinction. Still seems surreal!

Whilst studying I applied to the Health Board for temporary (bank) admin work. I decided to tick the ‘disabled’ box but had hovered over it for quite some time. Being the Health Board it felt slightly less daunting a declaration than it might with a private employer. Initially it involved a horrendous interview experience and a couple of weeks of berating myself constantly for having done so badly – but it also prompted more research and I learnt why I had such difficulty with recruitment interviews (it’s a common autistic thing, for reasons!). Second time round I was successful; then I was surprised to be invited to an Occupational Health pre-employment interview for the first time ever and wondered about the wisdom of disclosure. However, after a quick phone call I was ‘passed’ for the temp work but told I’d have to meet with them if I get a substantive role. [To be fair it seemed to be mostly about identifying any accommodations that might be needed but it still feels somewhat unnerving to think that people who don’t know me, may not know much or anything about autism, could veto a job offer. It also adds further uncertainty about future recruitment processes, knowing that even if I’m successful at interview, it won’t be the only hurdle to overcome – I then need to be ‘approved’ by Occupational Health. I can see why people think twice about declaring it]. It took two long, bureaucratic months before I was offered my first placement – just after my course finished! Ironically I was to start in a service co-located with the IAS where my journey had begun 11 months earlier! Briefly, that felt slightly strange but then felt like an opportunity to regain my personal and workplace confidence, among people for whom autism isn’t an alien concept and where it doesn’t feel like I will have to explain myself. I never expected to see the assessor again but bumped in to her in my first week and had a brief chat about the intervening year. What a short and yet extraordinarily long year – how odd and yet apt to have been given the chance to start work again in the place where my journey began.

Having done a lot of reflecting on my life and trying to understand it all with a new perspective there are a lot of things that make more sense now. Some small stuff, some big stuff, some good, some not so good. However, I am glad I didn’t know earlier. I’ve been able to take advantage of lots of opportunities, had a really successful and enjoyable career and my reflections and future are against a backdrop of knowing I can achieve good things – even if I find that hard to believe right now. In the unlikely event that, as a female, I’d been diagnosed as a child or young person I wonder how much I would have held myself back or been held back by others and how different my life might have turned out.

Among my reflections, one of the illustrations for me of my communication differences was when a good friend fell ill in September 2006. People don’t like talking about cancer and try to stay positive so I really didn’t get that the arrangements for her to go to a hospice over Christmas (apparently to make it easier for her to receive meds) were an indication of just how poorly she was. Getting a phone call from her partner on New Years Eve evening to say I needed to get there right away was a shock. When we arrived she was lucid, still larger than life and full of smiles. That was the last time I saw her. In just 4 months she’d gone from being her vibrant self to….not being here. I never understood why I hadn’t realised something so big at the time. It took me a long time to process that and, being me, I didn’t talk to anyone about it.

I’ve also reflected a lot on people and friendships, always a source of joy and confusion to me! I love people, love being around people, chatting to people – once I’ve got to know them and feel comfortable with them! It’s the bit between meeting and being comfortable with someone which creates confusion and stress for me – how do you navigate that?! People and friendship are pretty basic human needs for many people and being autistic doesn’t change that for me but knowing you find it hard to ‘do properly‘ means you miss out on a lot. Having never really understood at what point someone becomes a friend or having the confidence to assume that a person wants to spend any time with me makes friendships a nightmare to navigate and maintain. Not sure I’ll ever master it but at least I know now it’s not me being odd, it’s just a concept which is hard for autistic people to get to grips with. So, if I’ve seemed like a bad friend it is/was not intentional – it’s just not something I find as easy as most people do.

My brain is still reflecting and processing what it means to be autistic, getting to know myself, accepting my differences and learning to be kinder to myself, trying to tame the perfectionism in me (unlikely). The need to know everything about autism as quickly as possible is easing, there’s still a lot to learn but it doesn’t have to be right now! To be honest, it’s exhausting trying to keep up with my brain a lot of the time but at least with the new job it’s got new stuff to think about and isn’t quite so self absorbed and focused on me and autism – that makes a nice change! I’ve acquired a whole new vocabulary around autism, learnt about things like masking, burnout, stimming, spikey profiles, identity first vs. person first language (fyi I’m autistic not a person with autism in the same way I’m not a person with gayness!) and Executive Function, realising that after a lifetime spent believing I am lazy that it is more to do with Executive Function issues. Executive Function is a weird one to get to grips with – after managing a team, multi agency partnership projects, projects my team members were doing, being a member of management team etc and not seeming to have a problem juggling those things it was very strange, confusing and frustrating to find it really difficult to manage my dog training course work and planning to get everything done, resulting in tears on a couple of occasions! If someone had tried to explain that scenario to me a couple of years ago I really wouldn’t have understood at all so I can see why people don’t find it easy to relate to this.

I’ve learnt a lot about myself and am beginning to understand what makes me different, or neurodivergent. I don’t have co-occurring conditions in the way a lot of autistic people do – except for migraines, a lot of them – or too many sensory issues. I’ve always tackled bright light by having lots of pairs of sunglasses so there’s always a pair at hand, year round; perfume and strong smelling chemicals/cleaning products etc give me migraines; I’ve always hidden something which I now understand is Misophonia – an inability to tolerate certain noises. Hearing those noises is torture but it feels ridiculous because they are everyday noises, mostly related to people eating and drinking, cutlery and crockery but others too. There’s no rhyme or reason, it’s awful, puts you in to fight or flight mode and can be extremely distressing and stressful. I’ve always felt too embarrassed and ashamed to talk about it and that seems to generally be true of people with it. I still won’t talk about it because it makes absolutely no sense so how can I expect anyone else to understand?

If it sounds like it’s all been a negative experience that’s not entirely true. I’ve learnt a huge amount – yes, about autism but essentially about me and how I work. Initially, to be honest, it’s not great to know you don’t operate like the majority of people but even just knowing that becomes OK, it at least allows the possibility of being more forgiving to yourself. Yes, sometimes it feels confusing and frustrating, sometimes you realise that there are things you thought you’d eventually do better that actually you probably won’t – that can be annoying and demoralising. However, the opportunity to get to know the real me and understand some things that have never really made sense is immense. I’m very lucky to have a fabulous wife who has been extremely understanding and tolerant whilst I’ve been immersed in my autism fog and, to be honest, probably not that easy to be around at times. She’s kept everything around me and us functioning whilst also holding down a job and doing a huge amount of volunteering – and I probably haven’t always made it clear that I love, appreciate and value her. Autism has been a journey for her too.

[continued in Part 3]

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