Making It Up

as we go along

autism

For world autism awareness/acceptance day, read autistic writers!

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If you want to learn about autism, the best way is to read the people who are autistic. Not people imagining what it’s like and writing about it. So for world autism awareness/acceptance day, a list of autistic authors/artists/writers/bloggers. This will obviously not be comprehensive, please feel free to add your own favourites in the comments.

(Note, amazon links are affiliate links.)

Since I wrote this post, I’ve started building an affiliate list on bookshop, of books that have been published more recently, you can find that here

proof copy of the state of grace by rachael lucas next to a cup of coffee I read and reviewed Rachael Lucas’ The State of Grace last year and loved it. I highly recommend it for getting an insight into life as an autistic teenage girl. Buy at amazon.

M is for autism (review) and the sequel, M in the middle were written by a group of girls at Limpsfield Grange School, assisted by their teacher. More good titles for the teenage insight. Amazon here and here.

Corinne Duyvis, On the Edge of Gone is fantastic YA SF with a thoroughly believable autistic character in a very tough situation. Again reviewed last year, and available at amazon here.

Last fiction book I’ve read is Colin Fischer by Ashley Miller and Zack Stentz. I didn’t like this one so much, which is probably why I’ve failed to review it so far, I found it a bit too stereotyped/ cliched in its portrayal of the main character Colin. But it’s the only fiction book by an autistic author I’ve come across so far featuring a male lead, so needs including I think. Amazon.

You can find reviews of other books with autistic characters on Disability in Kid Lit, a site well worth bookmarking.

Titles I haven’t read but would like to: Jen Wilde, Queens of Geek. (Amazon.) I’m very much excited by the idea of Stim:an autism anthology edited by Lizzie Huxley-Jones, currently crowd funding on Unbound Also hoping that I’ll get some new suggestions from this!

On memoirs, I’m waiting on Katherine May’s The Electricity of Every Living Thing, which is out in a couple of weeks time. It sounds fascinating, and right up my coastal path 😉 Check it out on Amazon. Also Laura James’ Odd Girl Out is now available in paperback (I *will* review this soon!). Amazon, and there’s Fingers in the Sparkle Jar from Chris Packham (another one awaiting review). Amazon.

I’ve also read and reviewed a number of other memoir books, some of which include helpful tips – here are links to my reviews (which have their own Amazon links within). Nerdy Shy and Socially Inappropriateby Cynthia Kim, Pretending to be Normal by Liane Holliday Willey and A Pony in the Bedroom by Susan Dunne. A slightly different focus in From here to Maternity: Pregnancy and Motherhood on the Autistic Spectrum is very helpful on how to manage your encounters with medical personnel through pregnancy.

Yet to be reviewed The Reason I jump by Naoki Higashida (99p on kindle today) and the sequel, Fall down 7 times, get up 8. (Amazon)

On slightly more academic rather than personal texts, there are some excellent titles available from Sarah Hendrickx (link to Amazon author page who is also an excellent trainer and speaker. Another well respected author is Dr Luke Beardon (slightly embarrassed to admit I haven’t read any of his yet, must rectify) with a good range of titles. Author page

If autistic artists or bloggers are more your thing, I recommend checking out Sonia Boue and Jon Adams (soundcube) via twitter in the first instance. For gems like this.

Twitter is a great place to find autistic writers and bloggers. We tend to use #ActuallyAutistic when we’re sharing our own work (please don’t use that to talk about people who are autistic though. It’s for self identification) so that’s a good place to start looking. There’s also a massive list of autistic bloggers here, I’ve no idea how current it is though.

I’ve no doubt left out lots of useful links and titles, and for that I apologise (I didn’t realise when I started how long compiling a list like this would take!). Please do feel free to suggest extra resources/ titles in the comments – if you’re a first time commenter your comment will be moderated, but I’ll keep checking so that I can release them into the wild 🙂

Autism is

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A question? An answer. Often argument or debate.

An explanation. A reason. But not an excuse.

The shared love of time contemplating a dust mote in light. Another perspective on a complex world.

Finally friends found who just get it, through a lifetime of not quite there, and confused mixed messages.

Passion and love and righteous anger at injustice. Overwhelming emotions, a small boat in a stormy sea.

Sound. Every sound. All the time.

Velvet-hair-on-end shudders.

Being over looked and talked about but rarely listened to.

Diving into a new thing and the pleasure of losing yourself to it until it is understood, absorbed, encompassed and complete.

Understanding myself. Finally.

Big details, small picture.

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One of the screener questions used in the pre autism diagnosis questionnaire is whether you’re a big picture or a small details person.

I have no idea how to answer that question.

As I’m sure I’ve written before (although I can’t put my cursor on where or when to link) when I was a systems programmer I held the entire system in my mind. To do that though, I had to take it apart to see how it fitted together. So I had to go down to details to follow the connections to know the system. Does that make me a small details or a big picture person? Or could it be that big pictures are made up of small details and the question is nonsensical and the fact that someone is asking it at all in a diagnostic sense just goes to show how little we all understand each others’ ways of thinking?

I know that not all autistic people are systems programmers. But I wonder if actually connections and relationships, between things, concepts, people, details and their systems that is the thing we all do?

(There’s probably research and articles on this. I haven’t looked. )

I can get lost in the details of a flower. A dewdrop. A spider’s web. Even a dust mote in light. I can sink into its beauty, its essence, the way it holds all the world in itself.

And is still just a dust mote.

‘To see the world in a grain of sand. ‘

That too.

What's it all for?

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When I started blogtember, it was to kick start my writing again. And it’s worked – I’ve blogged every day in September.

It also hasn’t worked, because sitting at the kitchen table at 11 o clock at night, drooping with tiredness and yet not willing to go to bed because I haven’t blogged isn’t doing me, or you, the mythical reader, any favours at all. There are at least two posts in this sequence that are just there because I’m too stubborn to quit on a challenge.

And yet I’m also too stubborn to start some challenges. I still haven’t decluttered even the kitchen let alone the house. I wrote one article for the new business idea and then froze. The boom I started writing for write now live last year? Stalled at 20 pages.

Why am I so determined to complete things that will get me nowhere, and avoid things that might make a difference? What am I actually afraid of? Failing? Or succeeding?

I don’t really know any more. And I’m very very tired of it.

I might complete this challenge. I might decide that actually, it would be better to put the energy into something that might make a difference to our lives in terms of bringing in an income, or something that might make a difference to my self image by actually taking a shot at finishing something.

If I were you, I wouldn’t lay any bets on anything just yet. The one thing I am really, but *really* good at is is procrastination. (Anyone remember that series I was going to write on autism and burnout and all this stuff? Yeah, exactly.)

Hm. I think I might need to run through the compassion meditation I was just working through again. I seem to have let the compassion to myself bit slip through my fingers again.

This stuff is hard.

How do you deal with change when it's you that's changing?

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I’ve been writing on this blog for 14 years. If you’ve been reading as long, you’ve travelled a moderately bumpy road with me – childbirth and rearing, pregnancy, lost pregnancies, in and out of work and career changes, my sister’s death, a move to a whole different county.

More recently there’s been the autism thing – suspicion, diagnosis, self analysis and acceptance. You’d think it might be time for a more settled period, all things considered.

Apparently not. Recently my body has been playing up a bit. Shoulder pains, back spasms, extra periods, and then suddenly, no periods at all. I took myself to the GP and was sent for blood tests and referred for an ultrasound. I don’t need the ultrasound though, as the blood tests confirmed that I’m heading full tilt for menopause.

This surprised me a bit. I’m only 46 (nearly 47) and I thought that that all happened later. There’s no pattern in the family for a variety of reasons, not least being I’m the eldest. And I realised that I don’t know anything about it – what to expect, how to tell, do I prepare, are there benefits? (Lower shopping bills at the very least?) First of all I was angry – I felt like something had been snuck up on me – what if I wanted another child? Had my last chance evaporated without me even noticing? (I don’t want another child. Well I do, but only in the same way that I want all the books, I don’t actually want to go through pregnancy again, and my heart and hands are pretty full with the four I have already.)

It’s just, I don’t know how to be this next me. We set a lot of store by our roles in life, and somehow, to me at least, the role of mother includes fertility. I’ve had hiccups with that before (I mentioned the miscarriages above) and those dented my self image somewhat but it all sorted itself out, and I was still a bearer of children. But if I’m not any more, I need to think about who and what I’m going to be.

I know, I’m overthinking it. It comes with the territory of being me, whoever and whatever that means, and I could as easily stop overthinking as I could stop squinting, being deaf or short sighted. Actually, stopping being short sighted would probably be a lot easier, I think there’s an operation for that. Overthinking, not so much.

So, next steps. Could it be time to finally accept the whole growing up thing? Or is it time to admit that’s never going to happen, and given that the alternative to changing is less than palatable, I guess change is what I’ll do.

Any hints, tips, health recommendations from those who’ve gone before? I’ve not had any hot flushes yet – is it possible to get through this without any at all? The GP said my hormone levels implied I would have had some, but I really don’t think I have. And could all of this be linked with misplacing my words – I had wondered whether my art and photography experiments had pushed the words out, or perhaps it was an autistic burnout or regression, but now I’m wondering if all of these changes are interlinked.

I have more questions than answers. I *am* more questions than answers. But that’s not unusual either.

The sticky blogging webinar I just watched told me that what I need to make it as a blogger are great headlines, story with emotion and something else I’ve forgotten already. Does all of this qualify?