Autism and me

Neon sign that reads 'you are here'

Just a bit of a disclaimer, I’m still learning loads every day, so if you’re autistic and reading this thinking ‘well she shouldn’t have said THAT’ or ‘that’s not how we talk about things here’ please let me know, and I will update my use of language ASAP. I’ve been writing this post on and off for a couple of weeks, and it’s just a really happy coincidence that it’s being published on World Autism Awareness Day 2019!

Knowing I’m a little bit different to most people but not being able to pinpoint exactly why that’s the case or being able to properly articulate my feelings has been like carrying around a weighty rucksack for the majority of my (nearly) 26 years on this planet.

8-ish years ago before we got Digby the Labrador, Mum and Dad said if we got a puppy, we would no longer be getting real Christmas trees in December like we had every other year of my life, we would be getting a fake one. This small, innocuous, totally fair enough trade-off should have been fine, but it wasn’t. I took the break to tradition to heart and I didn’t throw a strop or anything, but I went up to my room and cried. No, not cried, sobbed. We were getting a puppy – something my sister and I had been petitioning our parents for forever – and here I was, absolutely breaking my heart over a bloody plastic tree. Whilst sobbing I was getting angry with myself for being so stupid which only made it worse. I eventually told my best friend about this, and said something like ‘I think I might be on the spectrum’, but as I didn’t really fit the profile of any of the other widely publicised Autism stereotypes, I never took it any further even though the thought stayed in the back of my mind.

Fast-forward to me at the age of 25, and the beautiful, ugly website of Twitter has helped me no end. I follow lots of wonderful women for many different reasons, and one of them happens to be Katherine May (her Twitter handle @_katherine_may_ ). Katherine’s written a brilliant book called The Electricity of Every Living Thing, and I won’t lie, I initially downloaded the audiobook because the cover is gorgeous, and I was too impatient to order a physical copy and wait for it to be delivered. It’s Katherine’s memoir about her journey to an Asperger’s diagnosis, and how her walk along the South West Coast Path allowed her to come to terms with it and evaluate her life through a less self-critical lens.

It’s a brilliant read. I could relate a lot to Katherine, and at points of frustration I’d think about my experience with the Christmas tree. Again, I didn’t really do anything or think anything more of it straight away other than telling my best friend that I’d been reading an awesome book. But the seed Christmas Tree Gate had planted was beginning to germinate.

One day, for reasons unknown to me, I googled ‘women with autism’ and up came a link for a free online module from the Autism Society about girls and women with autism. This module included video clips from autism experts, as well as a whole load of brilliant and relatable autistic women talking about their own experiences. Lying on my tummy on the living room floor – which is where I do all my important work – I completed the whole thing in one go. It went through childhood, different presentations of it, why autism in girls often goes undiagnosed until later in life, as well as autism and motherhood. With every sentence there was a new revelation! It sounds cheesy, but all of a sudden, I was looking at my life with a new-found clarity. From things I struggled with as a child to challenges I face now in both my professional and personal life – it all made sense! That thing that’s made me feel different for all these years suddenly had a name, and didn’t feel like a negative at all.

To my shame (I didn’t know much about autism at all prior to completing this course) at this point I still had the idea in my head that being autistic meant not understanding emotions and a resulting lack of empathy. This is part of the reason that I never considered that might be the reason for my differences, because I do feel empathy. SO MUCH EMPATHY. I often have absolutely no idea what to do with all of it. The module helped me realise that this is a thing.

One vivid memory I have as a child, was eating a bowl of Coco Pops (other chocolatey puffed rice cereal available but, let’s face it, is not as good), and there being one left in the bowl. I felt a bit sad that this little solitary Coco Pop was on his own and he’d watched his entire family get eaten. After chasing him round the bottom of the bowl for a bit, I got him on my spoon and ate him and remember feeling that all was right with the world again. I recently shared this with a friend who has been officially diagnosed as Asperger’s, and she could relate. What followed was essentially two hours of us sharing stories about feeling sorry for anthropomorphised inanimate objects. It was hilarious, but also a relief. Like slightly opening the lid of a bottle of fizzy and relieving some of the tension I hadn’t previously realised was there.

The really important thing to take from this post is that, like Katherine in The Electricity of Every Living Thing, I view myself in a kinder and much less-critical way. I could write an entire book about all of the things which can be explained in hindsight, but one of the first things that came to mind when I learned about copying social behaviours, is the way I panic if I put an ‘x’ at the end of a message and someone doesn’t return it (this has led me to ONLY sign off messages the same way the other person does unless I know them really well). Another thing: I’m really bad at remembering birthdays, and then I panic about wishing someone a belated happy birthday whether on Facebook or sending a card, so I end up not wishing them a happy birthday at all and looking like a bitch. I then worry that ‘oh well I can’t wish their partner a happy birthday because I didn’t wish them a happy birthday and I can’t wish their friend a happy birthday because they’ll think I’ve got beef, I’ll have to start on the 1st January 2020 and do better next year’.

I mimic how people talk to me a lot. That means I get on with naturally friendly people who put me at ease, because I interact with them using the same level of enthusiasm – they’ve already indicated that that’s what they’re comfortable with. People who take the friendly p- out of me are great, I can joke with them and take the mickey back because I know where we stand. If someone’s quiet with me, I’m quiet with them right back because I have no way of reading their expectations of me and I’m terrified of getting it wrong. This has led to a vast number of people from school, both universities I’ve attended, and colleagues thinking that I am stuck up and uninterested about them. Even worse, is that if I’m with a friendly person who is chatting socially with ease, I am likely to be the same as them, but talking to the same group of people without them there to ‘copy’ I would come across as thoroughly up my own arse too scared to say something wrong. In this sort of situation, people have no idea how to take me. I always worry about asking people about themselves for fear that it will come across too personal and nosy, because I can’t judge if it is or not and this makes me look disinterested. In reality, I love it when people are talkative and share things with me unprompted, I can then gauge from that what questions to ask.

I panic when it comes to funerals. It’s not a situation I’m familiar with, so having the right words does not come easily, and I never feel like I’m being a very good comfort to the people around me. If I don’t know how to respond to something, I have a tendency to try and move on because I don’t know what else to do which makes me appear dismissive. If I say something daft or embarrassing, I don’t have a laugh and get over it. I beat myself up over it time and time again asking myself why I said it until I feel sick. I’ve got a list of things going back to Primary School which I still kick myself for on a regular basis.

I’ve lost friends who have moved away, or who I have moved away from. I’m not seeing them regularly face-to-face so I can’t read them or judge their moods. I have no idea how to support them with words (this doesn’t apply to my two very best friends Amy and Toni who I have known for a combined total of one million years) and I find myself often saying the wrong thing or them just not replying to me anymore which sends me into anxiety mode that I’ve upset them, and makes maintaining friendships from uni very exhausting and hard. When I was at Swansea, I also felt like I didn’t fit into the church I went to, I just found all of it SO DIFFICULT and I didn’t have the tools to be able to articulate why I found it difficult or what I needed in terms of support.

If I’ve had a day where I’ve spent a lot of it answering the phones at work helping customers, or interacting a lot with colleagues, I get burnt out, and I generally need to spend the evening by myself reading or scrolling aimlessly through social media to recharge my batteries. Even if I really, really want to spend an evening with friends the chances are I’m just too spent. Not tired exactly, just drained. I also get overwhelmed by messages on social media. If I owe you a reply, please know I’m thinking about it, and even if it takes me weeks and weeks, I WILL get back to you.

This applies to events too. I agree to go because I really, really want to support my friends in their endeavours. Running races, hen dos, and even book launches I want to go to them ALL and yell to everyone how awesome, brilliant, clever, and wonderful my friends are and how proud I am of them. But often the event draws near, and my anxiety about going and interacting with strangers often overwhelms the above. In a similar vein, if I have prepared myself for a social situation with a group of close friends and someone invites someone else, I don’t really know/ wasn’t prepared for last minute without me having time to get used to the idea, it sends me into meltdown because I haven’t allowed myself enough ‘mental beans’ to get me through it without becoming tired and grumpy. (When I’m just with close friends, it requires much less energy because I can be unapologetically myself and they know what the score is.)

I think about what people think all the time. How what I’m doing or saying looks, how I’m presenting myself, what someone might be thinking about me. This could be a series of posts in itself, but I often feel like an actress in my own life, and this makes it nearly impossible and highly stressful for me to determine who I really am. Who I am, what my likes and dislikes are – I recently wrestled with whether I like football because I actually like it, or because Dad likes it and I’ve concluded it’s okay that it’s probably both.

Oh, and if I’m writing something neatly in my notebook and I balls it up, I have to rip it out and start again which is apparently characteristic of school/ uni note taking in autistic people.

I could go on and on and on and on and on about this stuff, and let’s face it I probably will eventually in separate posts about all of these things, but I’ve already written the equivalent of a university essay, so you’ll be pleased to know that I’m not far off coming into land with this.

After huge amounts of research, talking to so many other autistic people about shared experiences, reading so many books and blogs, I can confidently say that I am happy self-diagnosing myself as being autistic. Some people are happy leaving it at that, but I will be looking into pursuing an official diagnosis for my own peace of mind.

I know there will be family and friends (and maybe acquaintances and enemies) reading this possibly feeling a bit shocked, and to all of you I say this: this doesn’t change a thing. If you love me, you’ll still love me. If you think I’m a bit of a knobber that probably won’t change either which is fine by me.

Back when I was putting together a list of things to show my GP when I go to ask for a referral, I asked Toni if there was anything she could think of over our time as friends that she would add to the list. She said she’d go away and have a think, but couldn’t come up with anything. When I eventually went through my list with her, she said ‘that all makes a huge amount of sense, but I didn’t think of them because I didn’t think of those as autism things I think of them as Katie things.’

And (as per usual) she’s right.

Being autistic isn’t some kind of disease to feel bad about, it’s a brain difference. There’s no ‘oh that bit’s Katie, that bit’s her autism’.

It’s all me, and quite frankly I think that’s brilliant.