Obsessed? Or just very very focused? 

Gary Numan recently shared how he is autistic, and that because of that, he tends to get ‘obsessed’ with things. Or, as he says, people refer to it as obsession, with perhaps negative connotations, while he thinks of it as something positive, an ability to focus intensely on things. 

And I agree. 

I have written before on how our interests and passions are negatively framed as obsession. And yet, non-autistic people can have deep interests on things and just be seen as passionate about a subject. 

When something sparks my interest, I tend to focus completely on it for a while. Until I am satisfied I have absorbed as much information on it that I possibly can. 

Those interests can be very varied. Some are a bit obvious, like my interest in reading scientific papers about EDS or autism. Or my attempts at an encyclopaedic knowledge of Pokémon. But they can also come from left-field. Things I never thought I’d be into can become the focus of my attention for various reasons. 

Today, for example, my attention has turned to American football of all things. Although, for the last few months, my interest in all types of football, such as soccer, rugby and gaelic, has risen immensely so it’s not completely out of the blue. It helps that I’ve recently made friends with autistics who are interested in these sports. So, I find myself watching matches, where I can, or at least following the progress of certain teams. Learning the names of key players. Reading up on their injuries. And following the league tables. 

I saw a list today of ‘special interests’ of autistics, divided into ones held by ‘mostly autistic women’ and ‘mostly autistic men’, with a third list for ‘both’. And again I was annoyed, not just by the exclusion of non-binary people, but also by the splitting up of the interests in the first place. I didn’t read it too carefully, so I don’t know where football fits in the list. But I’m sure plenty of autistic women are interested in football, and plenty of autistic men are interested in knitting, or whatever. 

Special interests don’t need to be genedered. They just are. And they are a huge source of comfort, of passion, of focus, for autistics everywhere. 

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“Never assume gender”

Some people think that you shouldnt “expose” children to transgender people, or even to the idea that they exist or that there are more than two genders. They say that the children will be “confused”. 

First of all, children are often confused by things. There is nothing wrong with that. It’s how children learn, by being confused, asking questions, seeking clarifications. Secondly, those people really underestimate children and do them a disservice. Children usually grasp topics that we think “too difficult” for them, if we do our jobs and explain them in a way they can understand. 

I recently had a chat with my kids about transgender people and non-binary people, and the subject of pronouns. I did not explain to them about me being non-binary, but only because I didn’t want them to bring it up in front of their father. I’m still not completely comfortable discussing it with him as I’m not certain what his reaction would be. 

Anyway, my two kids “got it” immediately. They were not “confused”. And although my son doesn’t talk about the topic much, seeing it’s not one of his special interests, my daughter does. Or rather, she likes to correct me when I make assumptions about people. Whenever I do that, she gently says “Never assume gender.” Those three words are all I need to hear to remind me to be more careful. 

Never assume gender. So simple. So true. 

I recently read a not-yet-published blog post by someone quoting myself and a few other autistic people. And I had to tell him that, while I love the post, at least three of us quoted are actually non-binary. He had assumed we were all female. A simple, common, mistake to make. And I’m so glad he gave me the opportunity to correct him before publishing. If only more writers, bloggers, journalists etc would do the same. 

So, my advice to you, courtesy of my eight-year old daughter, is…before you write about or talk about a person, please check with them (if possible) which pronouns you should use…and

Never assume gender!

Nighttime 

Nighttime is the worst time. It’s when the pain demons come out to play. When they take out their daggers and their red hot pokers and go to work on my feet. They work with glee.

I have considered amputation. I have read up on it, asked around. But the thought of “phantom pain” scares me. You cannot amputate that away. 

And so I distract, distract, distract. But you can only distract so much before weariness envelops every ounce of you. 

And so you go to bed. And let the demons have their way. 

And you pray that you will either die, or sleep and live till morning. 

And then the whole cycle repeats. On and on into infinity. 

Following the numbers. 

Since I decided to ease off Twitter for a while, I have no idea how my number of followers may have changed as a result. I guess it’s less then before, but it could be the same or more. I have no idea. I can go and check the follower count, but I still would be none the wiser, as I’ve no idea how many followers I had before I left. I really couldn’t say, to the nearest 100.

When I first joined Twitter, I unintentionally installed one of those ‘X number of people followed you, and Y unfollowed’ app things. And it really freaked me out. It made me think about and concentrate on things I never normally did. So I deleted it as soon as I figured out how. 

I know some people really really care about their number of followers. And that’s their prerogative. But I never has been mine. I’d write the exact same things, and behave the exact same way, whether I had one follower or one million. And while I do care a lot about so many of my followers, I was brought up not to really mind what people think of me. So, if they want to unfollow me, I don’t need to know why, and it doesn’t upset me in the least. I didn’t join Twitter to gain followers. I joined to share my blog and maybe make a few friends along the way. Which I have. 

There is one way in which I do care about the numbers though. I have this odd, probably autistic, thing of finding happiness and satisfaction in certain numbers and patterns. Like, when the number I am following matches my number of followers exactly. Or when my number of followers makes a palindrome, like 2002. Or just when certain numbers ‘look’ a certain way. Like 2159. Which is my number of followers at this very second. Can’t explain why that number pleases me, but it does. But I really don’t mind if it changes!

Born with a Death Wish

TW Suicidal Ideation

Note: please don’t be concerned, I’m not about to do anything silly or act on these thoughts. Just write about them. 

One of my earliest memories was on my 6th birthday. We had recently moved to Dublin and I wasn’t adjusting well. And I clearly remember the thought that popped into my head:

“I want to die”. 

And that thought has popped into my head, at least once, practically every day since. 

It will pop into my head at random times. Uninvited. And that’s the way it’s always been. And probably always will be. 

I cannot cross a bridge without wanting to jump off. I cannot take my meds without wanting to take way too many. 

But I know I’d be dragged out of the water. I’d vomit up the meds. That I wouldn’t succeed. 

I made my first suicide attempt shortly after that sixth birthday. I swallowed a whole bottle. Of vitamin C. Obviously I had no idea it wouldn’t do anything at all. 

I tried to drink bleach when I was around 10. But just started coughing uncontrollably. 

My next, most serious, attempt was when I was 23. As many of mom’s sleeping pills as I could find. That earned me a week’s holiday in the locked psych ward. I’ve never talked about that “out loud”. Not with anyone I know offline, anyway. 

That was when I realised that there wasn’t much point trying anymore. It wouldn’t work and there’s no way I want to end up back in hospital.

But the thought is always there. Always in the background. I’ve made my peace with it. It’s like an old, annoying, friend. 

One of the side effects of Neuontin can be suicidal ideation. And that made me laugh. Because, yes, I’ve had an increase in those thoughts. But that’s because of the incredible pain I’m in. And the loss of function in my hands. So, it seems to be a “damned if you do, damned if you don’t” situation. 

Right now, I’m just sitting with these thoughts. Taking each day as it comes. Because…that’s what I’ve always done. It’s just the way I’ve always been. Think I was born this way. 

Searching for Side Effects

I have just started a new medication to try and ease the pain of my peripheral neuropathy. It’s a generic form of gabapentin. Because of my previous bad reaction to a similar med called pregabalin, and my bad reaction to most meds in general, my GP has started me off on a very low dose. 100mg for last two days, 200mg today and next two days, then 300mg going forward. The usual starting dose is 300mg, and can increase to about 1800mg. But we prefer to take the cautious approach. 

And so, now to see what side effects, if any, I notice. The problem is, the most common side effects are those I have symptoms of anyway: dizziness, fatigue, nausea. And I know I’m going to have a hard time knowing if any increase in these is caused by the meds or just normal fluctuations in my condition. 

Take fatigue for instance. I’ve been absolutely exhausted the last two days. But I’m frequently exhausted. Plus I haven’t been sleeping too well as the kids have been ill and been waking up frequently at night. So, I can’t really put this exhaustion down to the new meds. 

The same goes for dizziness and nausea. These are symptoms that frequently flare up and so I can’t really tell if they are due to the new meds or not. I just have to wait and see if they remain bad despite obvious triggers easing up. 

There may be other side effects, which may be easier to spot. With the pregabalin, my personality changed, I acted as if I were drunk, I slurred my words and staggered a lot. So, those were clearly side effects, and stopped as soon as I came off the meds. So, for the next several weeks, I need to keep a close on on myself and ask others to do the same. 

The aim here is not to have absolutely no side effects. I don’t think that’s actually possible. But just to keep them to tolerable levels until I can take a high enough dose of the meds for them to actually lessen my pain. And again, I don’t expect them to take away the pain completely. Just to decrease it to more manageable levels. And if after a certain length of time at the highest tolerable dose, maybe three months, if there is no difference in my pain levels, I will stop taking them. And then the whole trial-and-error process will start again. But this time with one less med to choose from. The list of “meds I haven’t tried” is growing shorter by the year. 

So, fingers crossed this latest med works, and that I can put up with the side effects. If I have any. 

Turkish Tea & Turkish Coffee

My mother came home from her holiday in Turkey this year with a present for me. A pack of Turkish Tea and one of Turkish Coffee. 


And so I have been drinking a lot of both. 

It just occurred to me that not everyone is as familiar with these drinks as I am, so I thought I might write a little about them. 

Instructions on how to make them are easy enough to find on the Internet. But I like to use the recipes in a book my mom gave me a long time ago. It’s the best “Turkish food for foreigners” book I’ve found, and has beautifully written pieces on the history and on the ingredients. It’s called Classical Turkish Cooking: Traditional Turkish Food for the American Kitchen and it’s written by Ayla Algar. 

Turkish Tea:

So, here is her recipe for Turkish Tea. I’ll illustrate it with my own photos. 

I need to first show you a Turkish “Kettle-and-Teapot” called a Çaydanlik :

Fill the kettle with fresh cold water, bring it to a full boil but do not let it boil too long. Rinse a 2-cup teapot with hot water. Put in 2 or 3 tablespoons of loose tea and pour in 2 cups of boiling water. Put the teapot on top of the kettle (if the kettle has a large opening on top) or keep the teapot very warm without letting it boil. Put a folded towel over the teapot and let me he tea brew 5 or 6 minutes. Strain some tea infusion into each glass or cup and then fill with hot water. Most people sweeten their tea with sugar and some like it with lemon slices.

The finished product, along with tea strainer:

Turkish tea is usually drunk out of tulip-shaped glasses holding about 100ml. But mine broke when we moved house so I’m using these 200ml glasses out of Tiger instead. Next time I’m in Turkey I’ll buy proper glasses. They come with tiny little spoons for stirring in a cube or two of sugar. 

Turkish Coffee:

Turkish coffee is no longer as popular in Turkey as Turkish tea. But most people still drink it on a regular basis. 

Before I share the recipe, here is my Cezve or special pot for making it in. 

2 servings:

3/4 cup cold water 

1 and half teaspoons sugar (for medium-sweet coffee)

3 tablespoons Turkish coffee (medium roast, pulverised coffee)
Combine all ingredients in the cezve and mix with a spoon. Put it in very low heat and do not stir. Watch carefully, about 3-4 minutes, until a thick foam rises for at least 1 inch above the original level. Remove the cezve from the flame immediately, just before it begins to boil and overflow. Carefully divide the foam into two demitasse cups, taking care not to disperse it. Put the cezve back on the flame only for a few seconds and pour the coffee, with a steady hand down the sides of the cups, taking care not to disturb or disperse the foam. Serve immediately. 

Here is my finished product:


Again, I don’t have proper Turkish Coffee Cups but use espresso cups instead. 

And there you have it, Turkish Tea and Turkish Coffee. I’d love to know if you’ve ever tried them and if you enjoyed them.