Making It Up

as we go along

autism

Did I mention that I’m tired?

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I am tired.

I went to the physio today, as advised by the GP two weeks ago, to request referral to the hand therapy team. The physio thinks the GP is supposed to do that referral, and also that the meds change could take months to make a difference.

And I tried to point out that the hands are just one part of a rolling pattern of joint problem and pain and I got told that carpal tunnel can cause elbow and even shoulder pain, so that’s still what we need to sort first.

So I walked down to the beach and watched the waves and then this afternoon I walked some more, in my sensible, supportive walking skies, and now my left foot is cramping and painful and somehow I don’t think that’s carpal tunnel.

Separately, I’ve been talking about how, when you’re autistic, one of the difficulties you can have is framing the problem you’re experiencing in a way that explains is to the right people who can help you with that. And spending over a year getting nowhere solving issues with my hands (and arms, and now it would appear my foot) feels like its part and parcel of that.

The health system is set up to solve individual problems, it’s not particularly holistic.

And the benefits system is similar, so if you’re having problems working, there’s one route for financial support if it’s a short term problem, and another if it’s a long term disability, and if you’ve got some of the issues but not quite enough you aren’t going to get that much support.

Which leads to an increase in anxiety, but the GP doesn’t deal with that, that’s the wellbeing service and so there I am, explaining myself again to another helpful person.

So far this patchwork of support has passed me to and fro like a slightly hot potato, juggled and battered in the process. And with nowhere yet to rest.

I can’t help feeling there could be a more efficient way to do all of this.

Did I mention that I’m tired?

A Kind of Spark by Elle McNicoll – an #ownvoices review

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Disclosure – I was sent a proof of this book free for review, and links may be affiliate links.

A kind of spark

There’s a trepidation in approaching a book about an autistic character when you’re autistic. What if it doesn’t describe autism the way you experience it? What if you’re going to have to spend the next however long replying to people that that’s not quite how it works for you? We’re desperate to see ourselves on the page, like other people get to, but far too often it’s a caricature or a stereotype written by someone with no experience, rather than a representation.

Not in this case. In this case, debut author Elle McNicoll is neurodivergent herself. She writes with a sure touch, describing aspects of autistic life without apology, but also making it clear that there’s no one way to be autistic, or to experience autism, and although her two main autistic characters have a lot in common, given they are sisters, there’s mention of other characters and experiences too. This doesn’t read like a debut, and while it’s middle grade fiction suitable for younger readers, (Addie is 11 and narrates the story accordingly) I thoroughly enjoyed it for myself too.

There were particular parts that leapt out at me. Being bullied by a teacher, for doing things differently. Not fitting in at school. That sense of burning injustice and overwhelming pain on behalf of someone else. The need to do something about it. Hyperfocus on a favoured interest, acquisition of knowledge, a deep dive into a topic.

I was not diagnosed autistic as a child, and I didn’t have anyone to explain to me the things that I was going through. There weren’t books with openly autistic characters either, and so I want to leap up and down and shout about every one I come across now, and make sure every child gets the opportunity to understand about other viewpoints. It’s important.

One day, I’d like for it to be possible for a character to be incidentally autistic rather than it having to be the point if that makes any sense, but I think we’ve a way to go before that happens. I’m very glad that we’ve got books like this explaining autism in the mean time.

My autism isn’t always my superpower. Sometimes it’s difficult. But on the days when I’m finding electricity in things, seeing the details that others might not, I like it a lot.”

About the book:
A Kind of Spark tells the story of 11-year-old Addie as she campaigns for a memorial in memory of the witch trials that took place in her Scottish hometown. Addie knows there’s more to the story of these ‘witches’, just like there is more to hers. Can Addie challenge how the people in her town see her, and her autism, and make her voice heard?

A story about friendship, courage and self-belief, Addie’s story was born from Elle’s own experiences of neurodiversity and her commitment to seeing greater representation in children’s books.

Published by KnightsOf, a publisher focused on actively finding voices from under-represented backgrounds. They are committed to publishing inclusive, commercial books and ensuring that the most diverse team possible, from across backgrounds and communities, work on every book. #BooksMadeBetter

Find A Kind of Spark at Waterstones (affiliate link), Hive books (affiliate link) or via your local independent bookshop. (Lots of places seem to be low on stock, but hang in there, it’s worth it.)

If you want to read other autistic voices, other recommendations/ reviews here:

proof copy of the state of grace by rachael lucas next to a cup of coffee
State of Grace by Rachael Lucas
Pretending to be normal
Pretending to be normal
For world autism acceptance day, read autistic authors

Pebble by pebble.

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One year ago, I took myself to the doctors, thinking I was having a resurgence of the anxiety and depression I’ve battled all my life.

It took a while, but turned out the problem was actually an underactive thyroid, I wrote about it a couple weeks ago.

So what’s the problem now? Because I’m exhausted, anxious and depressed again, and I don’t know why.

I guess I probably should see if I can get my bloods checked again. Just in case the thyroid is drifting down again. And I should make sure I’m taking my multivitamins in case vitamin D is implicated again. And maybe I should increase my fluid intake in case my blood pressure is too low (we’ve POTS in the family, it makes you reevaluate fluids and salt).

But once I’ve done all those things, what next? I can try yet harder with creative endeavours (daily blogging is a pretty good start) and make sure I get outside as often as possible but when life is like wading through mud what do you do to lift your spirits?

Thinking of self

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Over on twitter today I’ve been involved in a fab conversation with lots of other autistic adults. People have been discussing how they felt post diagnosis, which, particularly for those of us with late dx, can be a whole complicated bunch of things. And then people have gone on to talk about special interests and what makes them happy.

Right at the moment I’m not doing very well keeping myself happy. I’m watching all these people talking about happy making activities and all I’m doing is getting through the days.

I don’t have a special interest at the moment. I was trying to do nanowrimo to finish either of the books I’ve been working on, but while a few people have said really lovely things about my writing, every time I’ve tried for a commercial opinion it’s overwhelmingly negative. I chose that word carefully. It overwhelms my ability to believe in myself, to focus on the story, to find the words.

I’m sure right about now you’re telling me I need to grow a thicker skin. To not worry about the commercial appeal, or even the readers. To tell the story for the sake of the story. But I’m a little greedy. I wanted my story to be one people would want to read. To buy.

I’ve been writing for a very long time. (About as special an interest as I’ve ever had I guess.) And I always come back to it. But I’m very bad at finishing things. (Honestly, you’ve no idea. This house is full of half read books, incomplete crochet /knitting /sewing projects. Paintings, drawings, manuscripts.)

What is it that I’m worried about? That I’ll finish the story and no one will read it?

Well, yes. That’s up there.

And I don’t think it’s that I won’t have anything else to carry on with when I finish, if I didn’t start anything else I still don’t think I’d run out of projects.

There’s something about finishing things that gives me a problem. I don’t know quite why. I’d like to understand what it is that gives me difficulty seeing things through. But it’s something that I guess I’ll go on working through.

And tomorrow, I’ll do some more writing.

Managing hashimotos, sciatica, anxiety and depression while autistic.

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When I wrote my cheery reintroduction post the other day, it felt like I ignored a pretty big elephant in the room. This is the other side of me, the bit that I don’t usually brag about.

It’s hard to know how far to go back with all of this. And this isn’t a pity party post, I’m writing about this in the hope that the information is useful to some one. It took a while to diagnose most of my conditions, and I’d love to shortcut someone else to the answers they need.

My autism was diagnosed a few years back, and the story of that is sprinkled through the blog under the autism tag. (I’ll stitch it all together in a page tomorrow.) It’s not a medical condition, but it does affect access to medical help. Doctors underestimate pain if you don’t express it in the standard way, I hate talking on the phone and our GP surgery is all phone appointments these days.

Which is partly why it took so long last year to get myself to the GP for help. I thought it was a resurgence of the depression I’ve dealt with on and off all my life, despite me doing all the right things – exercise, creative stuff, eating well, all of it.

And the doctor assumed the same, and put me on antidepressants.

I didn’t feel any better. I felt a whole lot worse. I started to develop a tremor which meant I couldn’t take photographs or draw. Then it got so my muscles would fatigue when doing normal stuff, the real crowning joy being the time I had to call Tim to meet me at the supermarket round the corner (seriously a 3 minute walk) because my arms gave up and I couldn’t carry the couple bags of shopping home.

The year before I’d been having physio for my chronic every joint problem. If it’s not one thing it’s all of them. And the physio pushed for a whole battery of blood tests and that time it was a vitamin D deficiency. So I wondered if it was that again, or side effects from the anti depressants. But the doctor suspected hyperthyroidism and did yet more blood tests.

Turned out in hypothyroid, and tested positive for antibodies, which means I have Hashimotos. ‘The silver lining,’ said the GP over the phone ‘is that you get free prescriptions for life. But you have to take thyroxine daily.’

Once I’d got that established I got a different GP to prescribe a withdrawal dose for the anti depressants, and guess what, the tremor went too.

GPs are supposed to have protocol to deal with autistic patients, to be more accessible, because we’re really bad, generally speaking, at pushing ourselves forward and getting the health care we need. Mine set up a couple appointments so I didn’t have to do the phone thing, then he stopped and now I’m back to not going in again.

And it’s November, I still can’t run (hip and back, that’s a whole other story) and I can feel myself slipping again.

I’ve got a pain clinic appointment tomorrow. I’m hoping for some answers about how to strengthen my back so that I can work towards running. I’ve started a gratitude journal, and every day it’s sunny I’m out with my camera. It helps, but I don’t know if it will be enough.