The Angry Chef and autism

Anthony Warner, aka The Angry Chef, is a blogger who’s wit, profanity and writing skills I’m in awe of. He has written a book that I’m also in awe of, and I intend to review it very soon.

 I wasn’t 100% happy with his chapter on the GAPS diet and autism, however, and shared my thoughts with him. And being the awesome person he is, he wrote this blog post by way of an apology and also to highlight the horribleness that is the PETA campaign that demonises autism. 

So, if you want to read a truly wonderful blog post, I highly recommend it. 

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Another One Bites the Dust

Just a little update on how I’m getting on with the Neurontin. Basically, I’m not. 

I’ve only been taking it for a week. Two days on 100mg, three days on 200mg, and now on my third day on 300mg. 

In this past week I have:

Wandered off while cooking and lost track of time, leading to three burnt dinners in a row. 

Gone all the way to the computer repair shop but forgetting to actually bring the laptop I need repaired. 

Thrown out my battered old pair of shoes, which the bin men dutifully took away yesterday, without first checking for, and removing, my €300 special insoles. Yup. 

And basically wandered around in a daze and stupor, much more so than normal. While having my normal, or even higher than normal, amount of pain. 

Reminds me of my reaction to Lyrica six years ago. Which isn’t surprising at all. 

All that’s missing are the slurred words and staggering. 

And so, I’m tapering back off the Neurontin. I can’t go on like this. 

Yet another painkiller off my list. 

And so the search continues…

September Tiger Haul

Didn’t really buy much this month. Mostly some favourite snacks and a few of her things that looked useful. 

From left to right:

Notebook with blank pages,

Giant pipe cleaners (so stimmy!)

Lid lifter, which releases steam during cooking and might help things not boil over

Clockwise from top left:

French nougat

Dutch waffles 

Liquorice root chews

Apple mini muesli bars

Lollipop with sour dip

Holding on

My mental health has really taken a nosedive recently. I think it’s a combination of a bad reaction to my new meds, exhaustion, everyday ableism and losing function in my hands. 

Whatever the reason, I’ve been feeling so anxious and depressed and much more suicidal than usual. 

I have, however, been holding on. Surviving. Taking each day as it comes. 

Drastically reducing my time on Twitter has helped. It’s not just the drama or infighting. It’s the bad news in the world getting me down. So, I’ve also avoided newspapers, tv news. Trying to stay in a bubble as much as possible. So I’m out of the loop when it comes to what Trump or May said next, what storm or earthquake has hit where, how close we may or may not be to witnessing a nuclear war. 

Limiting bad news has helped me hold on. 

Other things that help are:

Taking a stroll outdoors at least once a day. Even if it’s only in my garden. 

Talking to my plants and my pets. 

Taking my time and really savouring my cup of tea or coffee. 

Playing video games, especially with my kids.

Doing some colouring and sharing finished pictures with my friends. 

Watching comedies on Netflix (I really recommend Norsemen by the way)

Trying to limit how much moaning and complaining I do. Yes, it’s good not to bottle it up, but I tend to then get caught in a spiral of negativity that doesn’t do me any good. 

Writing, writing and more writing. You may have noticed I’ve been writing a post a day lately. 

And, with the help of all of the above, I’ve been holding on, treading water instead of drowning. And I do believe it’s going to be ok. 

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. 

“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 and they “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.