Why I am like this

I’m autistic. This might be a surprise, or not, for some of you, and you may even question that it’s true.

The fact is, I am, and it changes nothing about me. I also don’t want it to change how you treat me.

What it has changed is me accepting myself the way I am, which is something I’ve never been able to do.

My whole life I have asked WHAT IS WRONG WITH ME? Why is everything that seems easy to other people so difficult? How do people cope with the world? It’s so bright and busy and LOUD in every way – how do they all wind down afterwards. The answer is, they don’t have to, because the world isn’t as LOUD for them.

And I don’t even mean the outside world, I mean the inner one too. I literally found out last year that I don’t filter out background noise, as in, I just found out that’s even a thing. Ian always asks me why I’m so nosy and I ask him how he CANNOT hear a conversation on the next table.

Food and me – we have a weird relationship too. Turns out it’s sensory and routine, and it’s common in autistic people. Eating the same thing every day and thinking certain foods are repulsive isn’t fussy.

Talking of routine – I HAVE to know timings, I hate surprises, don’t visit me without plenty of notice, and god forbid there’s roadworks on my preferred route somewhere. If I like a piece of clothing, I’ll buy 3 of it and wear it to death, or I’ll buy 4 outfits the same but different colours and rotate them like a uniform.

All the silly things, the quirky things, the habits, the anxieties – everything about me I don’t like or other people think is unusual, they all appear in the books I’ve read about autism.

My mental health has always suffered because I hated who I am in my brain, I hated that I couldn’t cope with the world the same as other people. The constant trying to fit in and be a normal person is exhausting, and even then I’ve not been that good at doing it.

For the last twenty something years I’ve been a drinker – drinking masked my more autistic traits. By December 2018 I was drinking half a bottle of vodka every day, sometimes a whole bottle. People don’t believe this, because I hid it, and drinking made me appear more ‘normal’.

Eventually I stopped drinking because I was vomiting up blood and having trouble breathing lying down. That’s why it hurts when people ask when am I going to start again. Any time I’ve given up before I always went back, usually limiting it at first until eventually it’s back to every day.

I’m only mentioning this because not being drunk (at least one day a week if not more) made it almost impossible to cope at first. I thought it was just withdrawal but three months later it was still too hard.

I’ve since found out that a lot of autistic people have alcohol problems. It helps us mask our true selves, it helps us fit in, and it helps us cope with what we don’t understand.

After my first six months of sobriety, when things weren’t looking any better, (and after my dad told me he was visiting the next day and I had a meltdown) I googled ‘why do I hate everyone’ and somehow ended up taking an autism quotient test. I got 44 out of 50, with anything above 33 showing significant traits on the autism spectrum.

I thought how much can you trust an online test, surely everyone is saying yes to these questions? So I got Ian to take it, and he got 5. Even he was surprised by the things I answered yes to, I hide it so well even from my husband.

I’ve never considered before that I’m autistic – I used to work with autistic children and adults, and thought I understood the symptoms. Turns out, none of us really do, cause everyone presents differently, despite the things we have in common.

In the past I’ve been diagnosed with eating disorders, severe depression, and generalized anxiety disorder, and had assessments for OCD, bipolar disorder, and borderline personality disorder.

Again, this is common, the struggle to understand ‘what is wrong’ and never fitting all the boxes.

The boxes I fit? Autism.

The more I, and eventually Ian, looked into autism, the more we realised it made sense of me. Before Ian has been dismissive of possible diagnoses, but this time he’s on board. It’s helped us to communicate even better than before.

My need for routine is at the root of my anxiety. So are my problems with knowing how to act in public. I was depressed because I didn’t understand myself or why other people behave the way they do – now I know neurologically I’m wired differently, and… it’s peaceful. I can’t explain it any other way.

I stopped taking anti depressants, not because I didn’t want to be on them but because I realised they wouldn’t ‘cure’ autism so I just stopped taking them (well, under GP advisement, obviously)

I still see my therapist, but now instead of talking about why I don’t understand the world, and how I feel like I’m an alien wearing a human skin, we talk about getting used to this idea that I’m autistic, dealing with people who might not believe me, and planning the future.

Because I finally know WHAT IS WRONG after years of asking, now I feel I have a future.

Socially acceptable misery at Christmas

This year it’s seventeen years since my mother died.

We were due to spend Christmas with mum and dad anyway, as we knew it would be her last one. In the end, we had to rush home earlier after the phone call everyone with an ill relative dreads – come home now, and say goodbye. 

December was crap that year – we spent the whole month wondering if she’d make it to Christmas, especially as she hadn’t met her grand-daughter yet. As mum and dad both have their birthdays in December, there were actually three dates we wondered if she’d last until. The whole month was full of frantic phone calls home, crying at adverts showing mothers who weren’t in intensive care, and having to answer over and over that question, ‘how is your mum doing?’

As she eventually died four days before Christmas, and we were already at home, we stayed there, and ended up Christmas shopping in my home town, where bumping into old school friends was unavoidable, and I answered every question about mums health with a chirpy, ‘oh she died yesterday’, as I hadn’t actually taken it in yet. Christmas Day itself, we had to open gifts we’d wrapped for mum and decide what to do with them, and I clearly remember taking a present into dad with a cup of tea and saying that mum had asked me to get it for him, and he tried to pay me back. 

It was the weirdest, most sad, celebration. We were all still shell-shocked, as I really think we all thought we’d be at the hospital on Christmas Day, so being in the house seemed luxurious. I can’t remember what we ate, but I remember we didn’t pull crackers. 

The point of me writing this is that me saying I’m sad in December because mum died at Christmas isn’t just because of the grief, which I feel sporadically anyway. It’s the memories. 

The whole of Christmas is so wrapped up with these memories, I find it really difficult around December, because everything is geared towards Christmas in this country. It’s all about ‘family’ and gatherings, eating and drinking, but always as a group. 

The following year, I wasn’t looking forward to Christmas, but we decided to spend it with dad because it was his first year without mum. We went down to Lincolnshire, and during a meal with my brother and sister-in-law, my dad announced he’d proposed to his new girlfriend. 

I don’t blame my dad for trying to give himself some happy memories – he lost his own mother at new year, as well as his wife at Christmas, so he’d wanted a happy occasion to think about in December instead of remembering the two rubbish ones. Much as I don’t dislike my dad’s fiancée, it was a shock, and we all spent much of Christmas drunk. 

Then five years later, I had a nervous breakdown in October, and found everything so difficult that year that I bought and wrapped all the presents in November, and wrote all my cards, in case I was ‘dead by Christmas’ myself. December is a hazy nightmare of medication swapping, and counselling appointments. One day, I sat in the bakery section of Asda and lay on the floor crying because it was too busy, surrounded by mince pies.

One other day in particular sticks out – it was the 23rd December, and at the end of it, I was given a crisis number, but was also told, in case I felt suicidal over the holidays, it was a different number as the usual one is closed. He then wished me a merry Christmas. 

This piece is all leading somewhere, I promise, and because of your patience, we’re almost there. 

December for me now, is the worst month of the year. It’s mum’s birthday to contend with first, and then all the other memories start to flood back. The way it felt waiting for someone to die, the rushing to the hospital, the sleepless nights and jumping when the phone rings. Then I start to remember how it felt a few years later, when everything made me cry, and I didn’t want to leave the house. Next, we have the anniversary of mum dying, and the grief for her being missing.

So when I feel more depressed than usual in December, how can I communicate all this to anyone who doesn’t know me well enough, or hasn’t got time to read all this? 

I say ‘my Mum died at Christmas’. It seems socially acceptable to be upset about this. It’s definitely better than ‘I find Christmas socially awkward and overwhelming’ or ‘Christmas has a wealth of bad memories and associations for me’.

I’m just not sure for how many years after her death this will be socially acceptable – then again, there won’t ever be a time I won’t miss Mum.

Social phobia explained

A couple of years ago, I had two Christmas nights out planned in the same week. I only managed one of them, because I had a complete meltdown on the Wednesday. On Friday, getting ready to go out, I posted this on Facebook.

WHY am I having kittens about tonight? is it
a. I have ‘nothing’ to wear, ie I haven’t bought anything new for Christmas parties
b. there might be people I don’t know
c. anything I do have which is clean, it might be too dressy or not dressy enough
d. we might not be able to get a taxi home cause it’s mad friday
e. whenever i wear make-up i look a bit like a drag queen
f. general food anxiety, because there will be food, and people eat
g, I might say something stupid without thinking and offend or upset someone
h. all of the above
Do other people think this stuff and just not say it? Or is it medication/lack of/depression/introversion/OCD….???

I had an overwhelming array of responses, but they mainly fell into the following camps

  • Yeah I feel like this too, it’s rubbish isn’t it?
  • I feel like this too, I think everyone does don’t they?
  • You’ll be fine. We’ll look after you
  • Why are you worrying about that? Stop panicking!

I’m so unbelievably lucky that since I culled my Facebook friends, I no longer have any comments like ‘What’s your problem? There’s so much more to be upset about.’ You might think I’d be annoyed about the ‘stop panicking’ comment, but it was a private message, and followed by many reasons not to panic from a very dear friend who understands me.

I then read this awful article about and how basically you can will yourself into not feeling anxious by realising the anxiety is your fault and you can control it. That, my friends, is how not to understand that social anxiety isn’t just being anxious or nervous – it’s a phobia.

Most people have a fear, whether big or small, of something. Show me someone who doesn’t have any fears, and I’ll show you a robot. I have a phobia of daddy long legs for example. I don’t like the way they move, and they used to make me scream. I can be in the same room as them these days, but time was I used to run screaming from rooms and had people telling me I was silly for being afraid of something.

On the other hand, spiders don’t scare me at all, but I have never once told someone they were stupid for having to get their husband to remove a spider from the bathroom. If you are afraid of spiders, there’s absolutely no logic to that fear. It’s very unlikely the spider you have in your house is poisonous, unless you live in Australia, and they’re very small – ‘more scared of you than you are of it’ is the usual response.

Now, I can understand a phobia of spiders if you have one, because I had a phobia of daddy long legs. I won’t belittle your fear. In return, I’d like it if everyone in the world would extend this politeness to people with social phobias.

We know it’s irrational. We know it’s stupid and silly, and that nothing will go seriously wrong, and everything will be fine in the morning. THIS DOES NOT HELP. If anything, it makes us feel worse that we feel this way because it’s silly and stupid, and so therefore, WE are silly and stupid.

A sympathetic response is nice – it’s the responses above like ‘we’ll look after you’. It made me feel loved and looked after. But the responses I really loved were the ones saying ‘Oh yeah, I totally feel like that too’. Knowing that you aren’t the only person who can’t imagine a balance between turning up in pyjamas or in full evening dress is like someone saying to me, ‘oh yeah, I don’t like daddy long legs either, they move in a weird way.’

So whilst on that Wednesday I couldn’t get myself out from under my quilt on the couch, couldn’t stop crying when I thought about leaving the house, and eventually ended up having a takeaway in the safety of my house, on Friday I went out. Talking things through and having people being empathetic helped, and I went. Yes, it was fine, but in my rational brain I knew it would be.

The next time I get that phobia about going out, I won’t think back on this and how it was fine, and not feel phobic any more – in the same way the next time you find a spider in your bathroom and it doesn’t kill you, you won’t then be able to be rational about it the next time you find one in your bath. You’ll still go and get your husband to remove it, in the same way as I’ll go and find my friends to help me remove the catalyst to my fear.

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