Telling people I’m autistic is tricky – it’s like coming out all over again except this time people don’t really understand what you’re talking about. Even if coming out as gay hasn’t always been a positive experience at least I’ve never had to explain what it means! Now the challenge is working out when it’s necessary or helpful to tell someone and trying to weigh up the likely response – maybe complete indifference, lack of understanding, tackling stereotypes or “but you don’t look autistic” – and whether you’ll regret sharing something so personal and intrinsic to yourself only for it to fall on deaf ears or feel judged for it. I also need to remember that just because I’ve spent the last year immersed in autism doesn’t mean that those around me know anything about it or, quite frankly, care about it. Autism changes nothing and yet changes everything, it is a massive deal. I am autistic and as I come to know myself better it is important to me that people understand that my differences don’t mean I’m rude or not caring or whatever doesn’t quite fit their perceived ‘norm‘ but is simply because my brain is wired differently.
There’s a lot that is not included here, in particular the impact all this has had on my relationship with my wife. Let’s just say it’s not all been plain sailing. In fact the reason I agreed to seek a diagnosis was specifically because of the communication problems that had arisen in our relationship. We’ve been together 14 years but about 3 or 4 years ago we just seemed to keep hitting a brick wall in terms of communication. It didn’t seem like normal relationship issues and we definitely wanted to be together. There were also work stresses for both of us which may have affected me in ways I wasn’t aware of but which probably contributed to the issues at home. During the wait for the ASD assessment we occasionally questioned whether we’d actually make it. Diagnosis itself wasn’t going to make everything OK overnight. In fact, due to the mental effort of me processing it all it’s made it worse at times. However, we still want to make our relationship work and in sorting out our communication differences, we’re not alone. We’re very fortunate to have access to support from the IAS so we’ve just started working with a Speech & Language therapist to help unravel our communication differences and find some new tools to help us. No doubt it won’t be easy, it’ll probably involve some soul searching and a mix of trying and failing before we get it right. [Just to be clear, a big thank you to my wife who read this first and agreed to me sharing]. The good thing is that we do want to get it right and I’ve tentatively begun to accept that ‘help’ is sometimes both necessary and OK. Asking for help (with anything) is a whole different ball game, even if I know I need it, not sure I’ll ever crack that one!
Rejoining the gym has been really positive. When your anxiety gets to the point that a suggestion is made for a referral to the Primary Mental Health team you know something needs to be done. There is absolutely nothing wrong with using mental health services (and I’ve spent a lot of time, professionally, supporting and promoting young people’s access to mental health services, because it’s a good thing!) but I just wasn’t ready to hear it. My answer was/is the gym. It’s also been an opportunity to recognise and acknowledge that using a Personal Trainer, whilst expensive, is actually me creating my own support structure for that activity – without it, no matter how much I want it, I just don’t turn up or actively engage. So, I’m gradually understanding that support needs are addressed in all sorts of ways! My anxiety isn’t as obvious now and, whilst that’s not all down to simply going to the gym, it definitely helps me to feel much better about the physical me too.
The time taken to process your diagnosis varies but, from what I’ve learned, about 2-3 years seems not to be unusual. I can well believe it! So, this is still fairly early days then but I’m generally in a better place than I was last year, a few dark days here and there but hopefully they will recede. The good thing is it’s going to continue to be a learning curve, so I know I will learn a lot more in the next 12 months, about autism and about my autistic self. Even since I started writing this reflection I’ve recognised things about myself that now make more sense. Whilst there are broad characteristics, the big take home for me (at the moment) is how autism seems to affect people in a wide range of ways but, for a lot of us, we’ve learnt to hide it so well in order to fit in, that it’s hard for others to see how it impacts us individually. When people, professionals or not, know something about autism and make a statement to help show their understanding of you but you’re thinking ‘that’s not me’, you realise how complicated this is to navigate (because it’s great that they are trying and you don’t want to keep correcting people, either because you’d become a pain in the butt or because it makes you question whether it’s actually true!).
My next steps, beyond continuing to get to know myself, are to think about what to do with my life. Do I use the dog training qualification or stick with the NHS? We’ve had our dog for a couple of years and she is my only experience of dogs so despite the shiny new qualification I would feel like a fraud if I charged people to train their dogs – the perfectionist in me requires a lot more of me! Besides, it’s too daunting to do something like that by myself. 18 years of the NHS clearly wasn’t enough and after a 16 year break it’s good to be back! Like any new job there’s lots to learn. It’s not something I’ve done before and I hope I don’t get bored once I’ve got to grips with it – boredom has definitely been an issue for me in the past, before I got in to leadership roles and was able to use my motivation and skills to help identify and create change to make a difference for people and services. I don’t need a fancy job title or big bucks to encourage me to use those skills, appropriately, wherever I am, but I do want to use my skills to make a difference and I definitely need to be kept busy and interested!
So, all in all it’s been a difficult, revelatory, educational, exciting, emotional, interesting, anxious, exhausting and very short but long rollercoaster of a year. I wonder what the next twelve months will bring!
This took a while to write (or at least repeatedly edit!) and the whole time I was asking myself what would I do with it. With the anniversary of my diagnosis approaching I knew I needed to write my reflections for me but I also wondered about whether to share it and, if so, how and to whom? Who would want to read it, how comfortable would I be with anyone else reading it (for someone who doesn’t usually give away what’s in my head this feels like a really vulnerable thing to do!), what would they gain from it?
On #LightItUpGold #AutismAcceptanceDay I decided I would share. My journey has been pretty easy compared to a lot of people – although it didn’t feel like it at the time – but one of the things that helped me along the way was reading about other autistic people’s experiences, they are all so different because we are all so different. So if sharing this resonates with just one other person then it’s worth it. For non-autistic people, please remember that this is my story and everyone’s is different. If you have autistic people in your life check in with them regularly. They might not tell you what’s going on or what they need but just knowing that you asked can feel good – and maybe they will tell you next time.
Finally, as I was making my decision about this, an article came out from the Autistic Advocate (@KieranRose7). https://www.theautisticadvocate.com/2019/03/an-autistic-identity.html It’s long, very long, but if you only read one article about autism then try this one; the article is informed by his own experiences as an autistic man and the advocacy work he does. There are lots of articles by him and others you could read to get a better understanding of the joy and pain of autistic life. I’ve learned a lot in the last 12 months from autistic peoples experiences. Some I can relate to, others I can’t but fundamentally we’ve all got at least one thing in common – we feel different because at some level very early on in life we were aware we didn’t quite ‘fit’. Whether we’re officially/self diagnosed or not, we know something is different about us.