The Challenge Ahead…

The next week (or so) has been bequeathed from hell to challenge me.

From ‘Can LYING Be Good??’ by Thomas Sanders

Its like someone has stuffed my brain full of cotton wool. Everything is a bit foggy and fuzzy and wooly, like the thoughts are having to fight through several more layers of fluff than usual. I even used the cotton wool analogy in my one-to-one with my line manager last week, as it was the only way I could accurately depict what’s going on up here at the moment.

So, what exactly is causing the proverbial cotton wool in my brain?

Well, there’s not just one thing. And therein lies our problem. It’s more of a conglomorate multitude of stress and awful and funerals and court dates and ever depleting annual leave allowances. So I’m going to all back on that good old stereotypical ‘I’m autistic and this is how I make sense of the world’ stalwart: I’m going to put it in a list.


I have two funerals to attend this week, both unfortunately connected to my dad.

Several weeks ago, one of my dad’s oldest friends (they met at university, I believe) died as the result of a brain tumour. As he was my dad’s age, with young children, and someone I had known my whole life (even if I’d never been close, they were still a constant) it was a horrible gut wrenching feeling – even though he was in palliative care and we knew it was going to happen, that moment when you find out is still a shock.
My first thought, after the initial sinking gut drop that I think we all feel when finding these things out, was for my dad. My dad doesn’t get very emotional very often or very easily – in fact, the last time I think I saw my dad cry was at my nan’s (my mum’s mum) funeral four years ago, and before that was my granddad’s (my dad’s dad) funeral eleven years ago. I was worried how this loss would affect him and, somewhat selfishly, I was anxious about how I would deal with seeing him in that kind of emotional state.

And then, two weeks ago (at my stepmum’s fortieth birthday dinner of all places), we found out that my other nan (my dad’s mum) had died. Although she was ninety years old (my brother and I last saw her at her ninetieth birthday party), there hadn’t been anything suggesting that this was coming. If anything, it was more of a shock than the death of my dad’s friend.

I was not close to my nan. And me saying that is not a surprise to anyone. I don’t think she ever really knew what to make of me, and I don’t think she ever really tried to figure me out. It was a big family and we lived much further away than the other grandchildren. Plus, I’ve always been the ‘odd’ one. Other family members are grieving a lot more than I am, and I’m almost jealous that they got to see a different side to her than I did.

But a funeral is a funeral. And my dad is my dad. This is the third time I have said goodbye to a grandparent, and regardless of how close we were or weren’t, both the finality of it and the knowledge of how devastated my dad is going to be (and how awkward and useless I am around people I love expressing extreme emotion) are going to be exceptionally difficult.

I also don’t know what the etiquette is for stimming at a funeral. Can I put headphones on if it all gets too much? Can I take a soft toy in my pocket? Can I chew my chewable necklace? As silly as it sounds, I’m beyond stressed about all of these things.

Either one of these things would have made this week significantly more challenging than a normal week. But I didn’t just say this was a challenging week. I said that this week has been bequeathed from hell to challenge me. So hold on tightly.


One of my friends is going on trial on Monday 19th March charged with terrorism offences.

Before anyone clutches their pearls and gasps in horror, bear with me a moment so that I can explain. My friend runs an organisation called Lesbians and Gays Support the Migrants (drawing from the Lesbians and Gays Support the Miners movement during the 1980s, excellently captured in the film Pride). Last summer, he and fourteen other activists (from LGSM, End Charter Flights and Plane Stupid) chained themselves to a plane at Stansted Airport in order to stop one of the many inhumane charter flights that asylum seekers are bundled on in the middle of the night (often being deported to danger and, in many cases, explicit promises of death).

I think they are heroes. Many people due to be on that flight were able to file last minute legal appeals because of the delay. It was the first protest of its kind in the UK, and it shone a degree of light onto a practice that most people don’t know exists. Unfortunately, however, that’s why the charges are so severe.

We were expecting charges of aggravated trespass, but, probably in an effort to make an example of them, they have also been charged with the terrorism related charge of ‘Endangering an Airport’. They could potentially be given a life sentence for standing up against a broken and inhumane system.

Their trial lasts for six weeks. On the first day, there is a demonstration outside the courthouse. And I will be there. I will be going on my own, and it will be terrifying. But I’m damned if I can’t find the courage to stand up for him, when he found so much courage to stand up for justice, equity and humanity.

If anyone reading this can offer some support, please attend or share information on the demonstration and the trial. I’m so scared and angry at how harshly they could be punished for doing something so good. But I’m also so fucking proud of him. You can find out more HERE

But that’s not even the end of this hell week.


I have two appointments with my doctor this week – a meds review at the practice and a phone call to discuss testing for certain intolerances.

Meds reviews are a pain in the proverbial buttocks. I go in with a deep-seated fear that they’re going to decide that I’m ‘fine’ and reduce my meds way below what I can cope with (there is a precedent for this fear – some years ago, the same psychiatrist who declared I couldn’t possible be autistic told me to wean myself off one type of meds to switch to another, and then, just as my old meds ran out, he fecked off on a two week holiday without doing anything about getting me started on the new meds). I also have to endure the dreaded weigh in (with eyes fixed to the ceiling, as I won’t set myself down the road of that particular numbers game) and the nightmare-inducing blood pressure machine (this set off every bell of sensory nope in my body, the result always ends up being higher than it should be because my fight or flight kicks in, and I get to enjoy the predictable litany of ‘stop clenching your fist, stop clenching your fist, stop clenching your fist’ from the progressively-more-irritated doctor).

And as much as I’m longing to finally get some tests done and be rid of this awful, bloaty, unpredictable cycle in my gut, I’m terrified that it’s going to be at the cost of some of my very favourite foods. Anyone who knows  me well will also know that if I really like a food, I really really like that food. I would happily exist solely on one of approximately three different meals (until the next favourite comes along and I spend the next six months fixated on that). The thought of having to drastically change my diet is causing me anxiety to the point where I think: is it worth having a less ouchy stomach for such a price? 

I know that gastrointestinal problems and certain intolerances are prevalent amongst autistic people. And that does make me feel a little better. It quells the anxiety-nurturing imposter syndrome for a few minutes.

And finally…


I have it. Monday and Friday. Like two ugly bookends holding together this devil-spawn of a week.

Also, compassionate leave? What is this witchcraft!? Burn her! Buuuurn heeerrr! 


I don’t know how this week is going to go. I don’t know how I’m going to be when it’s all over. I have my strategies in place, but that doesn’t mean that everything is covered – this week is decidedly not normal (an ‘I wouldn’t even have contemplated that’ level of not-normal), and I don’t know how far I can stretch in holding myself together.

So I’ll see what happens. That’s all I can do.

Note: The image used in this post is a screenshot from a video by Thomas Sanders, one of my favourite YouTubers. The character here is Virgil, the humanisation of Thomas’ anxiety in his scripted series ‘Sanders Sides’. Thomas has a series of videos called ‘Reasons To Smile’, which he and his friends put together as a resource for people to come back to when they’re feeling low, anxious, frightened, or just done with the world. Watching these videos is something that I actually included as a strategy in my signed-off-by-actual-governmental-organisation-Access-To-Work Anxiety Plan. I should probably do an incredibly gushy piece of writing about them and his channel at some point.  I shall be watching them a lot this week. Maybe you should give them a go too. 


Author: QueerlyAutistic
Erin Ekins is a queer autistic writer, speaker and attempter of activism. She has an interest in all areas of autistic social justice, but has a particular passion for improving understanding and acceptance of the intersection of autism and queerness. She runs the blog and is the author of the upcoming book 'Queerly Autistic: The Ultimate Guide for LGBTQIA+ Teens on the Spectrum'. By day, she works in campaigning and influencing at a disability related charity, but, by night, she is inhabits a busy space between angry internet person and overly-excited fangirl.

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