Silence – Shusaku Endo

Started: 10th of July

Finished: 25th of July (I had quite large break in the middle while I was out of the country)

Why did I choose it?

For a start, I haven’t read or engaged with nearly enough Japanese fiction. It might even be none (unless you count watching Memoirs of a Geisha a lot. No? Fair enough). There is so much amazing stuff that’s come out of Japan, and I’ve tried to make sure it’s well-represented on the master list, but my reading history doesn’t really include anything so far. That is frankly criminal.

When looking around for books, I read a lot of blurbs to make my decisions, and this one’s premise, the story of a Portuguese Catholic priest in Japan in the 17th century, just grabbed me. I had no idea that the Catholics had even *had* a mission to Japan at that time, and my tiny knowledge of Japan’s history only makes me want to learn more. I am fascinated by the forms that Christianity takes everywhere, and Japan provides some amazing history on that score. All in all, it ticks a huge number of boxes in terms of Books That Might Interest Me, and boy oh boy did it deliver.

What I liked

Where do I even start on this question? In short, I loved everything. This book is phenomenal. I have rarely been hit so hard simultaneously in the head, gut, and heart by something I’ve read.

For a start, the writing style is very different to a lot of the things I like. It’s very stark, brilliantly understated, and yet doesn’t fall short of the story it’s telling. The narration (this was another audiobook) put this across perfectly, relating Rodrigues’ escapades without melodrama or banality. It had the feel of someone who needs to tell a story that hurts them, a labour of love both to write and to tell. It’s magical and disturbing.

Aside from the events of the book, the questions of human nature and religious belief that it raises are dealt with sensitively and critically, whilst never turning the book from a novel to a treatise on the matters at hand. Like Farenheit 451, it makes you think about things without telling you it’s going to do so. This contrasts with the visceral drama of the experience of Christians in Nagasaki, the torture, the forced apostasy, and the psychological cruelty of the Inquisitor to make a book that knocks the wind out of you.

For me, the most striking thing was the discussion of Rodrigues’ reluctant waverings between agnosticism and his Christian faith. This is largely because I have been having these exact waverings myself for at least the last 10 years, and the book traced a lot of the same processes in Rodrigues’ thinking that have happened, and are still happening in my own. The problematic nature of Christianity when imposed on native peoples elsewhere was hugely thought-provoking, and made the authorities’ actions almost comprehensible but for the sheer level of cruelty inflicted. The breaking of Christ’s silence was heartbreaking. I don’t want to spoil how it happens for those who’ve not read it, but it’s just devastating to have watched Rodrigues go through so much and end up where he does.

What I didn’t like

Not much really. I watched the Martin Scorsese film based on this book while also reading it, so I’d got to the end of the story by watching the film before I heard it on the audiobook. That had a very neat, satisfying ending as to where Rodrigues’ faith was at the end of his life, but I can understand that providing that in the book wasn’t necessary. I’m not so great with subtle clues in books, and my need for the occasional obvious, straightforward statement does sit at odds with the style of the book in places. The space this gives for thought was great, but in the whirlwind of the story, there weren’t many points on which to settle, take a breather, and then enter into the next scene. I can’t decide if that’s a good or a bad thing, which I think is one of the amazing things about this book – it doesn’t walk along the usual lines of “good” and “evil”, but works in shades of grey between the two. Even the unspeakable evil of the Inquisitor is somehow justified in his rational, calm explanation of why he’s doing what he’s doing, which just makes him all the more disturbing.

Will I read this again?

I need to. This is one of those books that will keep giving every time I read it. It’s just stunning. At just under 8 hours of audio, which includes a long foreword from Scorsese, it’s half the length of the first Lord of the Rings book, and the same length as Harry Potter and the Philosopher’s Stone, but it packs in a huge amount of drama and thought. Even now, a few days after finishing it, I’m still unpacking it and working out, and I will be for a while.

What’s next?

I fell into the trap of asking this last time and failed a wee bit. After finishing this, I tried to carry on with Three Daughters by Consuelo Saah Baehr, but I’m finding it a little slow for my current fatigued state. I guess I’ll just work it out as I go – I have some long journeys and big tasks to do at home, so there’ll be something to listen to if I want! I have too many books to choose from, which I guess is the difficulty of a challenge like this. If you’ve any recommendations for what next, pipe up!


Farenheit 451 – Ray Bradbury

First Classics Club post! I’ve been a bit behind on actually getting the reading done for this challenge, and my two books a month idea has fallen pretty heavily already. I’ve only finished one since starting, but here it is. Who’d’ve thought that starting a new challenge like this before the final deadline of the academic year was possibly a slightly muppet move? Anyway, my first completed book of this challenge was Farenheit 451 (I started another before, but wasn’t really awake, and thought I could do better for it!) Here goes blog post number 1…

Started and finished: 29th June 2017

Why did I choose it?

I’ve got a long-standing penchant for dystopian literature. I went through a massive phase of young adult stuff a few years back, including The Maze Runner and The Mortality Doctrine (James Dashner), Divergent (Veronica Roth), the Matched trilogy (Ally Condie), the Legend trilogy (Marie Lu), The Killables and Declaration Trilogies (Gemma Malley), and the Delirium Series (Lauren Oliver). More recently, I’ve loved the Handmaid’s Tale (TV and book, both incredible, both worth the discomfort) and am itching to get back to those books that I last read what seems like a lifetime ago, and explore what the genre looked like before that. Some of the modern dystopian stuff (particularly the YA stuff) is a bit too slushy-romantic for me, and I’m far less interested in that than the other dynamics at play in other books.

I love the hypotheticals allowed by moving yourself into a world where you’re still governed by a lot of the same, recognisable instincts that drive people in our real society, but that take you just over the edge into a world that is superficially unrecognisable. It’s a similar kind of escape to fantasy, but with the added thrill of knowing that your world actually could turn into that one.

What I liked

Like many of the books on my list, this one was one I have as an audiobook, and I loved that – the frenetic, slightly whining voices of Montag’s wife and her friends was disturbing. I wanted to laugh, and then I realised why it sounded familiar – this narrator’s voice and his choices on how to present the words sounded just like Trump.

Anyway, audiobook stuff aside, this book was awesome. It resonates so much with some of the things I’m concerned by as an academic today – the fear of expertise, the suspicion of knowledge, the “we’re sick of experts” rhetoric. The other side of that is that it resonates with the thoughts my depression gives me a lot of the time: the news is depressing and best avoided; a better use of the internet is actually cute pictures of mini pigs eating ice cream (actually, there’s not much to disagree with there – see for yourself!); academic discourse is uncomfortable when it calls out your privilege and your cultural position (ethnomusicology is really good at that), so maybe it would just be nicer if I went off, played music, and stopped asking questions.

Of course, this is the whole point of the book, and it’s fantastically done. I love it when a book makes me think that deeply, and I realise only later that that’s what it was trying to do. I dislike books where I know what the message should be before I’ve seen it, because it never permeates my brain as effectively. These issues were also what I wanted to challenge with the Classics Club idea as a whole – I don’t want to get stuck in my young adult, sci-fi/fantasy, historical novel rut just because it’s more comfortable that way. I want to read books about difficult subjects, the ones I avoided while I was ill to get back to them when I could devote the proper time and energy, but was really avoiding because they were intimidating.

What I didn’t like

Like so many books like this, the ending feels somehow unfinished. I don’t want to imagine what happened later, I want to know it. It’s possibly a weakness of mine, but I felt like the end sort of rushed into a fizzled-out ending of “yeah, he sort of got away but there’s a whole new story to tell now”. That said, I don’t mind there not being a sequel (that I know of) – too many good books, films, and TV shows are ruined by carrying on after their source material runs out, so maybe it’s not the end of the world?

Will I read this again?

Yes. Absolutely. Probably a few times. It’s short, to the point, and has so much in it that I want to understand, contemplate, and think about.

What’s next?

Folk tales! These make up a huge part of my list: I have them from Hawaii, Russia, Norway, the Middle East, England, Ireland, Mexico, Peru, Ancient Greece, France/Brittany, and Japan. However, it’s South and West Africa that I’ll be tackling next.

I have two collections, South African Folk Tales collected by James Honey, and West African Folk Tales collected by William Barker. I know astonishingly and embarrassingly little about African folklore and mythology, but I’m excited to get stuck into these. I have a certain amount of trepidation about these collections being by Western authors (a point I’m constantly grappling with with a lot of my non-European folklore collections, and having failed to find native versions, I’m somewhat stuck for the moment), but I’m hoping that it should be interesting anyway.

I’ve made a few changes to the master list, too. I ummed and erred about re-reads, but in the end decided to take them out, along with one or two more that were too “safe” and felt a little silly to include (somewhat arbitrary, but whatever). I replaced them with Hawaiian Folk Tales (having found a few collections since writing them off for this challenge), Russian Fairy Tales, Lolita by Vladimir Nabokov, and Shusaku Endo’s Silence. I’ve tried to avoid more English/American stuff, and will aim to do so with any other swaps in future. I’m aiming for this list to be relatively static from now, though…

Classics Club

Yes, folks, I’m still here! I’ve been too busy/exhausted/ill/did I mention busy to write for absolutely ages despite my weekly self-imposed guilt trip about how I should be writing because I actually quite like it when I remember. However, I’m breaking the radio silence now to do something I’ve been toying with for a good few years now: I’m taking on the Classics Club Challenge.

The deal is as follows:

  • you pick a number of classic books, 50+, the definition of ‘classic’ being really woolly
  • you pick a date by which you want to finish them up to five years in the future
  • do lots of posting and linking to the original Classics Club blog as well as on your own blog (details on that here)

There aren’t really that many rules on what constitutes a classic; the easy one to pick is age (I’ve gone for a cut-off point of 1992 as that’s 25 years ago, and will be 30 by the time I’ve finished), but there are loads of other qualities in there too. In the end, I’ve gone with my gut feeling as to whether a book belongs on this list or whether it should be on the list of other things I want to read but don’t qualify for this one for whatever arbitrary reason.

So, I have chosen 100 books which I am hoping to finish by my 30th birthday on the 25th of November 2021. That’s exactly 4 1/2 years from now, so works out at about 2 books a month. I realise this is a pretty large number, but bearing in mind my propensity for audiobooks, the relative length of some of them, the fact that going home is a 4 hour train journey, and the fact that when I have deadlines (which, knowing of my plan to start my PhD in the next couple of years or so) I like procrastinating, I feel this is doable.

I’ll be writing about each book as I go (ideally), which should give me a good writing project as well as loads of interesting reading. The full list is below – you’ll notice a distinctly mythological bent to it all, but I’ve also tried to push myself outside my largely Western reading habits and get as far around the world as possible, as you can see in this handy map:

In 100 books, I couldn’t hope to represent every country in the world (there are, after all, nearly 200 of them), and there are significant gaps where the stories of some nations and peoples aren’t really written down. You’ll notice an absence of south-east Asian stuff (though lots of that was written too recently for this list and I’ll try to get through them anyway), Pacific-islander literature (which exists in a small-ish way, with a much greater amount of oral tradition that I’m interested in investigating), or eastern African literature, not to mention lots of Europe, Canada, and the western Indian subcontinent. I’m not intending to ignore these areas by any means, it’s just that including them on this particular list wasn’t going to work out, either due to the best books coming out recently, sheer lack of numbers of books, or pure lack of space. The stripy bits are where a collection of stories (such as the Thousand and One Nights) comes from a large area not really restricted to a country as such. There are minimal numbers of re-reads in there, although these are technically allowed. Lots of re-reads will happen in the next 4 1/2 years anyway, I’m sure.

Anyway, here’s the list in full, and it will eventually have links to whatever it is I write about each of the books as I go. I may be nuts taking on something of this magnitude, but screw it, books are good, and I won’t know without trying!

Links to reviews will be on the titles I’ve written about; strikethroughs are finished books I have yet to write about; grey text is for books I’m reading now.

  1. Achebe, Chinua, Things Fall Apart
  2. Afnasyev, Alexander, Russian Fairy Tales
  3. Akutagawa, Ryūnosuke, Rashomon
  4. Allende, Isabel, The House of Spirits
  5. Alighieri, Dante, The Divine Comedy
  6. Ananthamurthy, U.R., Samskara
  7. Bâ, Mariama, So Long a Letter
  8. Barker, William, West African Folk Tales
  9. Bede, Ecclesiastical History of the English People
  10. Boethius, The Consolations of Philosophy
  11. Bradbury, Ray, Fahrenheit 451
  12. Bradley, Marion Zimmer, Mists of Avalon
  13. Bushnell, Oswald Andrew, Molokai
  14. Campbell, Joseph, The Hero with a Thousand Faces
  15. Campbell, Joseph, The Power of Myth
  16. Camus, Albert, The Myth of Sisyphus
  17. Cao Xueqin, Dream of the Red Chamber
  18. de Cervantes, Miguel, Don Quixote
  19. Chaucer, Geoffrey, Canterbury Tales
  20. Chretien de Troyes, Arthurian Romances
  21. Coelho, Paulo, The Alchemist
  22. Collins, Wilkie, The Moonstone
  23. Condé, Maryse, Segu
  24. Confucius, Analects
  25. Conrad, Joseph, Heart of Darkness
  26. Cynewulf, The Dream of the Rood
  27. Dostoevsky, Theodor, The Brothers Karamazov
  28. Eco, Umberto, The Name of the Rose
  29. Eliot, George, Middlemarch
  30. Endo, Shusaku, Silence
  31. Esquivel, Laura, Como Agua para Chocolate
  32. Frazer, James George, The Golden Bough
  33. García Marquez, Gabriel, Love in the Time of Cholera
  34. García Marquez, Gabriel, One Hundred Years of Solitude
  35. Geoffrey of Monmouth, History of the Kings of Britain
  36. Heller, Joseph, Catch-22
  37. Hesiod, Theogony
  38. Hesse, Herman, Siddhartha
  39. Homer, The Iliad
  40. Homer, The Odyssey
  41. Honey, James, South African Folk Tales
  42. Hulme, Keri, The Bone People
  43. Huxley, Aldous, Brave New World
  44. Ihimaera, Witi, The Whale Rider
  45. Ishiguro, Kazuo, The Remains of the Day
  46. Joyce, James, Ulysses
  47. Jung Chang, Wild Swans
  48. Kafka, Franz, Metamorphosis
  49. Kafka, Franz, The Trial
  50. Lao Tzu, Tao te Ching
  51. Lévi Strauss, Claude, Myth and Meaning
  52. Li Ruzhen, Flowers in the Mirror
  53. Luo Guanzhong, Romance of the Three Kingdoms
  54. Mahfouz, Naguib, Palace Walk
  55. Malinke People, Epic of Sundiata
  56. Malio, Nouhou, The Epic of Askia Mohammed
  57. Marcus Aurelius, Meditations
  58. Melville, Herman, Moby Dick
  59. Mofolo, Thomas, Chaka
  60. de Montaigne, Michel, Essais
  61. Narayam, R. K., Swami and Friends
  62. Nietzsche, Frederic, Beyond Good and Evil
  63. Nabokov, Vladimir, Lolita
  64. Orwell, George, Nineteen-Eighty-Four
  65. Ovid, Metamorphoses
  66. Ozaki, Yea Theodora, Japanese Fairy Tales
  67. Peake, Mervyn, Titus Groan
  68. Pirsig, Robert, Zen and the Art of Motorcycle Maintenance
  69. Plath, Sylvia, The Bell Jar
  70. Plato, The Republic
  71. Rumi, Masnavi, book 1
  72. Rushdie, Salman, Midnight’s Children
  73. Salinger, J.D., The Catcher in the Rye
  74. Sei Shonagon, The Pillow Book
  75. Shelley, Mary, Frankenstein
  76. Shelley, Percy Bysse, Prometheus Unbound
  77. Shikibu, Murasaki, Tales of Genji
  78. Spence, Lewis, Myths of Mexico and Peru
  79. St. Augustine, Confessions of St. Augustine
  80. Steinbeck, John, Of Mice and Men
  81. Sturluson, Snorri, The Prose Edda
  82. Sun Tzu, The Art of War
  83. Tagore, Rabindranath, The Home and the World
  84. Tahar ben Jelloun, The Sand Child
  85. Tennyson, Alfred Lord, The Idylls of the King
  86. The Buddha, Dhammapada
  87. Unaipon, David, Legendary Tales of the Australian Aborigines
  88. Vyāsa, Mahabharata
  89. Wace, Roman de Brut
  90. Walker, Alice, The Color Purple
  91. White, T.H., The Once and Future King
  92. Sagas of the Icelanders
  93. Epic of Gilgamesh
  94. Tales of the Elders of Ireland
  95. The One Thousand and One Nights
  96. East of the Sun and West of the Moon
  97. The Mabinogion
  98. Tales of Joha: Jewish Trickster
  99. The Secret History of the Mongols
  100. Hawaiian Folk Tales

I haven’t decided which one I’m going to start with yet, but it will probably be one of the smaller ones to begin with (or one that I have on my e-reader, as I’m travelling a fair bit this summer!)

I’m really excited about all of these for different reasons, and I can’t wait to read them and write about them all! Stay tuned to see how I do. I’m hoping to carry on posting about my usual mental health/autism/academia/life rants in between as well, now that I’ve stopped underestimating/overestimating the amount of time needed to do my MA. Those things will start again post-deadlines (two more weeks!), but in the mean time, this will give me some writing purpose, as well as a few things I’m writing for other sites, which, of course, I will share with you all when they happen :)

Beyond Belief

I approached midnight on the 31st of December 2016 with what might mildly be termed as ‘mixed feelings’. I was in Germany at a big folk dancing event, dressed up, with bloody glitter on my face for crying out loud (self-inflicted, so I can be as scathing about it as I like). I had been dancing, enjoying the company of my Someone and some of my best friends, playing music, and generally having the sort of good time all my folk dance friends will recognise. And yet midnight loomed as this big moment in my head, as it had been for weeks, before I even realised that I had one hour fewer before it hit me because of the time difference. Actually, I noticed midnight had happened before the big countdown did, which was nice because it sort of defused the moment. I checked my phone, saw the magic numbers 00:00, and realised that I had made it.

At the stroke of midnight, I turned to my Someone, wished him a Happy New Year, then said “I made it” and promptly started crying. (I would like it on the record that I managed not to smudge either my eyeliner or mascara in the process of this, of which I am disproportionately proud.) The moment passed, I shared the last of my Christmas chocolate with him, passed around my small plastic bottle of rum (my hip flask carked it in my rucksack on the way over), and spent the first few minutes of the New Year feeling as happy and loved as any person could wish to be.

A year ago on the 5th of January, I was released from the psychiatric ward in which I spent the first five days of 2016, having been picked up from Donnington Bridge at around 2:30am on New Year’s Day (details here). What I didn’t know then was that these days would also be the prelude to my life completely turning around over the course of the next year, a springboard from which I’d end up catapulting (deliberate choice of word here, it wasn’t an entirely graceful process!) into a totally new life.

The main feeling I have about all this is a sense of incredulity as to just how much has happened in 366 days. I still can’t quite believe where I am, what I’m doing, and I still get choked up whenever I replay “I made it” in my head. However, instead of dwelling on all that (there’s at least 3 blog posts on the subject already), I’m going to list the things that I wish I could tell my year-ago self were going to happen this year.

  1. Help came. A fantastic nurse, an excellent therapist, and finally being done with the whole deal of being passed from pillar to post on a weekly basis. Not only that, but I was able to accept and work with it to drag myself out of the mental mire in which I’d been drowning. My new care system since moving is also amazing, and looks to be about to do some serious good in my second phase of recovery.
  2. I moved city. I uprooted my entire existence, took it several hours north of where I’d been before, and somehow, it’s worked. Lord only knows how…
  3. I got back into academia. Ok, maybe this was the least surprising thing to happen all year for anyone who really knows me, but the fact that I managed to get my arse into gear, apply, get in, and complete the first half of the course without losing my marbles is still pretty awesome. And I’m planning on applying for my PhD which is NOT SCARY AT ALL.
  4. I made friends. This is not a natural gift for me, and not something I’m used to in the slightest, but I have found people who understand me, who know how to do hugs with me (it’s not as simple as “give me a hug” all the time), who like the same music I do, who don’t care how weird I am, who in fact seem to kinda like that. I have a network of people in my new city who know what my brain does, to whom I can reach out if things get bad, and who are always, unfailingly there.
  5. I found a Someone. I was convinced I’d be single forever, which, while not a terminal condition by any stretch, was a really sore spot for me for a number of reasons relating to a bad relationship situation I was in a few years ago. But, lo and behold, I have found a Someone, and he’s rather awesome :)
  6. I have succeeded in dancing my legs off. Almost. I mean, I made a bloody valiant effort at it, and I’m going to try again this year, but I did loads of dancing and awesome stuff that makes me unspeakably happy. Some of this with the aforementioned friends, some of it with Someone, all of it marvellous.
  7. I rediscovered myself as a musician. This was one of the things I really thought I’d lost forever when I was really ill, and I couldn’t see a way back to enjoying music with the totality I had before. This year, I have been around a number of amazing people who have helped me find what I want to do with my music, and I’m looking forward to carrying that on.
  8. I had bad days, but they weren’t the end of everything. Actually, I’ve had some pretty damned horrific days, and they were terrifying when they were happening. I thought I had lost everything, the progress I’d made, the battles I’d fought, the rebuilding of my brain up to that point. The sun still rose the next morning (though in the UK, you could be forgiven for not noticing, sometimes) and I made it through to do better next time.
  9. I learnt to be kinder to myself. I am, and have nearly always been, the very worst of my critics, in pretty much every aspect of my life. A mental health nurse I met during one of my many crises towards the end of 2015 gave me some lifechanging advice: to be kind to myself. I have a long way to go on this one, still, but it sure makes life easier when I can do it.
  10. Being alive is 100% worth it. Needless to say, bridges and psychiatric wards sometimes aren’t the sort of place where this sort of thing is obvious. I was in so much mental pain when I went into hospital that I couldn’t see any way in which living could, or would, ever be worth it. I admit, there have been periods of, say, a couple of hours at a time where I wasn’t this resolved on the subject. However, the fact that I can count these moments only on my hands is definitely an improvement.

These 10 things aren’t the only unbelievable things that happened in 2016, but they’re a pretty representative list. It misses out the two festivals I’ve attended outside the country, including one where I travelled into the middle of France on my own, the number of new rooms I’ve walked into without knowing anyone, the highly respectable mark I got for my first essay, the successful plane flights, working through my abusive relationship from years ago, helping numerous friends and family members through various kinds of crap that I wouldn’t have been able to cope with before, rediscovering my alcohol tolerance, negotiating levels of awkward that would have previously rendered me unable to speak or interact, getting my bassoon out again, singing carols in public without losing my crap, learning some Norwegian, learning to clog dance, being a Boggart for a while, a wedding, IVFDF, Skint, ICBINI, Folk Weekend Oxford, owning a power drill, using said power drill without bringing any walls down (yet), almost finishing my first handmade dress, gardening, climbing… Ok, I’m glad I didn’t expand all of those.

Anyway, my point is 2016 may have sucked because lots of excellent, famous people died and there were some occasions on which people seemed to desert reason shortly before casting important votes. But for a year that I didn’t think I’d see, it could have been a hell of a lot worse.

Happy New Year, everyone. I can actually say it this year :)

On Making It

Hello everyone! Yes, I’m still alive, I’ve just been very quiet for the last few months. After my marathon autism awareness project, I kind of lost the will to write for a bit, then I moved house to a brand new city, then I was busy enjoying myself and making this fantastic life I’ve got up here, and suddenly it’s nearly 4 months since my last post and I don’t know how that happened. I’ve also got to a point where, despite thinking of lots of things to say about mental health and autism, I want to write about the other thousand and one exciting things in my life that give me joy and make things interesting. However, before that, I want to write something important that I’ve been absolutely fizzing about for a while.

It’s been a really good thing for me to be able to write about mental health from the inside, as it were, and the responses I’ve had from people about some of the things I’ve discussed have been amazingly heartening. Now I want to finish the job, in a way, on this phase of things, and actually write about what happens when you do finally make it to the next bit, when you actually start feeling well and getting your brain, mind, energy, and life back.

Because here’s the thing. At no point that I can remember while I was really ill was the idea of what it looks like to be well discussed, apart from one session I attended at day hospital during my (incredibly short) time there. At least, not in so many words. There was a lot of talk about feelings, emotional regulation, dealing with things that had happened, exactly as you’d expect and perfectly in line with what I needed help with. When I started feeling better, however, I realised that I knew virtually nothing about being well, and how to get back into things again. Funnily enough, when you’ve been stuck in bed for nigh on a year, barely eating, barely getting out, and burning out pretty much every time you try, getting back into the swing of things isn’t a walk in the park, let alone when you’ve been down so long you don’t even know what the swing of things even bloody looks like anymore.

There have been a lot of surprises in the last 4 months or so. Like how weird it is to feel normal, to not worry about things at all for a bit. Like how easy it becomes to simply get up and do things of a day. Like how tired you get from doing All The Things that you couldn’t do before. Like how being that tired is completely different to the exhaustion you get from just going to the bathroom or making a cup of tea when you’re depressed. Like how you realise that you haven’t laughed that much for that long in more months than you care to remember. The list goes on and on, of course, but it makes for an interesting thought process when you think about all the things that Being Well actually allows for.

There have been other surprises, too, which were perhaps less pleasant, but no less important. It turns out that stressful events, like packing up one home and moving to another, and waiting on solicitors and whatever it was that went wrong but that I still don’t understand, can still make things snap, and meltdowns can still happen. Sensory overload is still a thing (because mental health improvements don’t overwrite neurology – who’d’ve thunk?). Anxiety, nerves, stretches of days where there are no Spoons and therefore very little getting out of bed, bad days and such all still happen. Post-festival depression is an absolute pain in the arse. Bad news is still bad news, and can still write off an otherwise completely inoffensive day.

Being Well isn’t, and was never, a process of running off into the sunset and just staying happy. I knew this. I have always known this. I have had a dozen people tell me a hundred times each that this is the case. It doesn’t stop the bad days being scary, at first, when they happen, or the thought process that goes “OMG this feels like *that*, and it must be the same and EVERYTHING is going downhill again”. Recovery isn’t just an upward sweep that’s uncomplicated and easy. It’s a process of going forward, falling on your arse, getting up to find that you didn’t lose all the distance you gained, and trying not to fall over again.

What Being Well is is much more complex to describe. Ultimately, it reminds me a bit of results days, of which I’ve had a few now. The wind up is incredible. You’ve been working like a dog to make sure things line up for a good outcome. It gets closer and closer, and it feels like things are winding tighter, ready to turn on a dime if one tiny thing goes wrong. You’re nearly there and failure seems even more catastrophic, and even more possible than usual. Then you get the envelope, open it, find out that everything is fine, celebrate, get photographed jumping about, and then realise that you have the rest of your life to get on with. People congratulate you on getting there, on making the grade, on getting well, tell you how great it is that you’ve Achieved The Thing, ask you how things are, but somehow you’ve got past that moment even if they haven’t. The result is in the bag. Now what?

One of my favourite conversations I’ve had with my parents since getting better and moving away was the one that happened after I realised that there’s a certain tone to asking how someone is that suggests some trepidation about the answer. There’s that apprehension over whether this is an OK thing to be asking, whether there’s a can of worms waiting to be opened, whether the news is going to be bad or worse. I can understand why. When the answer my parents gave their church friends who asked how I was involved hospital, bridges, police, self harm, regular visits to Oxford, chasing mental health services, endless spirals of NHS admin, etc, asking became something people had to do, to keep up with The Story. Now, the answer usually involves Mum wracking her brains for anything I’ve told her in our last conversation three days ago that counts as news, or Dad nonchalantly reporting nothing new while the other person looks slightly bemused.

There’s something out of whack with how we talk about wellness vs. illness. Yes, there are lots of different conversations that happen about both. There isn’t “wellness stigma” like there is with mental health, so the need to talk about it for that reason isn’t remotely equitable between the two. Sometimes, mental health problems can appear out of the blue (though it’s very rarely that simple when you look closely at it), so it’s natural to talk about stuff that throw things off balance suddenly. Recovery is rarely so short, and often, it’s a gradual process. Short of celebrating every small achievement (look, I ate three meals for three days in a row! I got dressed every day for a week! I brushed my teeth twice today!) and every small grain of progress, there isn’t really a way to keep everyone updated on how it’s going. Sure, I have friends who have known about my progress on that sort of level, but frankly, those who are truly interested in my success at getting my bins out or leaving the house twice in two days are in a rather small minority.

Then there’s the added thing where everyone is telling you that you will get there, that it will work out, that it won’t always feel like this. It is, hand-on-heart and honest to God, one of the most irritating things when you’ve heard it enough. It’s not a disbelief thing, entirely, though that does feature. It’s like being told the end of the story, but not knowing how the events are going to reach that point. It’s like knowing that Dumbledore dies but not where, how, with whom, or what relevance that has to anything in the story. “Of course I know I’m going to be fine, but how is it going to work?” It doesn’t stop me saying it to people I know who are struggling, but I do nearly always preface it with something to the effect of “this is the easiest thing to say from the other side, but…” and hope that they don’t get annoyed (which they sometimes do, and kind of understandably so). It can feel like unbelievable pressure from these people who expect you to do something that you can’t even visualise, let alone see a route towards doing.

When people have spent so long supposedly knowing that you’re going to get better, they’re often not surprised when you do. It’s really hard for them to share in the sheer wonder that you get when suddenly you see and experience the world in colour, and you can feel a million different things in a day that aren’t just shades of the same inner greyness or a pale comparison to normal emotion. For me, it wasn’t a given that I’d even be alive today. In fact, there were several points at which there was a definite plan not to be. If you’d told me a year ago that by today, I would have found a new home in a new city, a group of friends with whom I can be completely myself, that I’d even work out what being myself meant, that I would have rediscovered myself as a musician, found out that I am really a dancer at heart, met an awesome Someone, and be about to start on a new academic route towards what I really want to do, I’d probably not have even been able to muster up the energy to laugh in your face. Yet somehow, all these things have happened, and a whole lot more.

What I want to say, at this point, is that I’ve made it. Except, obviously, I haven’t. Because there is no Making It, if you think about it. There is getting through the last bad bit, and learning how to stave off the next one, which I have no doubt will one day arrive in some form. There is getting on with life, now the ball and chain are off my ankle, living the fuck out of said life (but not in such a way that I’m going to burn out, which is the current danger!), and taking care of myself. There is eating the elephant one bite at a time, as my Ma says, and realising that there’s quite a lot less of it than there was a while ago.

What I can say is that I am as well as I’ve been in more years than I’d like to think about. I am healthy, stable, phasing down my antidepressants, active, and happy. Maybe it doesn’t need an announcement, and maybe it should be enough to just get on with it without having to shout about it. Or maybe, just maybe, we should be as willing to talk about wellness as we are about illness. Otherwise, what have you got to look forward to? I didn’t know I had this to look forward to until it came and hit me, and I realised it was the misty goal-shaped-thing I’d sort of imagined existed. Hypotheticals only serve so much purpose in these discussions, but I’m prepared to bet my second-best whistle that, if I’d known what I was running towards as well as what I was clawing my way out of, I might have written this post a little sooner.

AAW #6: Autism Acceptance

This is my last post as part of this project, I can’t believe it’s come round so fast! It’s also the post I’ve known I was going to finish with right from the start, and I think the most important of the lot. Awareness is one thing, and as I said in the first post, there’s nothing wrong with it whatsoever. However, stopping at awareness isn’t enough; you have to do something with that awareness for it to really mean much, otherwise it’s just another bit of knowledge you don’t use. For autism, I think one of the best and easiest next steps is acceptance, using whatever understanding you’ve gained to feel more comfortable with the idea of autism and not being afraid of getting it wrong.

There are those out there who actually refer to this week/month as Autism Acceptance Week/Month, which really speaks to the thing that we need. Unlike lots of awareness-raising things, it’s not that you necessarily need to be on the look out for symptoms, or getting tested automatically like for some cancers and things like that. It’s not that a simple blood test will allow you to be diagnosed faster, like with some cancers, or that it’s a dangerous thing to have or be around like infectious diseases.

Acceptance is about treading that fine line between treating people equally and accepting that you do need to treat people differently when there’s something going on. No, I’m not saying it’s easy or simple, and I certainly won’t claim perfection on my part. However, if someone tells you they have sensory issues to do with their autism, the acceptance bit is listening to them as to what might help, whether it’s something as small as choosing a different café because the light levels screw up their head less, or making alterations in a workspace to take account of the effects that sensory overload can have. I had a friend whose job included doing accessibility reports for places, and it’s encouraging that part of those reports did include discouraging harsh lights on the basis of sensory issues, which aren’t just restricted to autistic people. The world is getting there on realising how it can make things easier on a grand scale, albeit slowly.

The real acceptance, though, is from people. Individuals are the ones who can make the most difference to making life a bit easier. I’m so used to coping with the sensory stuff when out and about, it’s nice to be somewhere where it’s been considered, but it’s not essential. However, I’ve so far failed to get used to the way friendships seem to fizzle out around me because people don’t talk straight or don’t like it when I do. I still struggle to cope with the social anxiety when sensory stuff and having to talk to people when in combination, and the temptation is to just turn down social engagements full stop. I realise when I go back to University in September I’m going to have to bite the bullet, or end up being that reclusive classmate who never goes to stuff, and that’s my choice. However, what makes it a whole lot easier is not having to swallow or hide my anxiety and sensory overload in front of people. I am learning to “allow myself to be autistic” in public, whether that means I have to flap my hands when I’m stressed out (yes, “high-functioning” people stim too sometimes), get out and go somewhere else fast, or just have a hug and someone telling me it’s OK, that I’m doing alright, and no one’s judging me.

Naturally, my Mum is a pro at this, but she’s had a lot of practice, and it’s actually fairly straightforward, in a lot of ways. It involves listening to autistic people when they say what we need. Yeah, it’s that simple. We are gifted, very often, with the ability to talk very literally, and in a very straightforward, sometimes blunt, manner. If I say “I need to get out of here right now”, that’s honestly what I mean. If I say “the lights are really bright in here, but I’ll be alright for a bit”, it’s not a moment to panic, it’s a forewarning of the fact that my tolerance for that place isn’t limitless. If I say “my anxiety’s kicking up, I need to be outside for a moment”, that’s exactly what’s happening. If I say “please don’t touch me”, or “I can’t deal with this right now”, or “this is too much, please stop talking to me”, I’m not being rude, I’m telling you that I need space. It might seem unusual, and I might look rude while I’m saying it, but if I’m on the edge of meltdown or shutdown, it’s already taking everything I have to stay with it, and I honestly don’t have anything to spare.

Acceptance is not saying “I know about your autism, and I know better than you what needs to happen in this situation”. My Doctor might get to say that, a specialist psychologist might get to say it, and my psychiatric nurse definitely gets to say it, but no one else, not even my Mum. That might seem obvious, but I’ve had it said to me. In a complicated situation involving multiple disagreements, anonymous complaints, and a complete lack of understanding, I was told “the thing you will have to learn with your autism is…”. That would have been all very well if I didn’t already know the thing I was told I had to learn, and if the person hadn’t decided to condescplain (like mansplaining, but without the gender bit) to me about how my autism would work. It was hurtful, and made the autism (and therefore me) a scapegoat for all the problems that were happening at the time, removing my agency in the situation. Bearing in mind, also, that this was one of my peers, it’s doubly insulting that they chose to act high and mighty about autism without accepting their own culpability in the matter. I was not perfect, and nor would I have claimed to be then, or in fact, ever, but the attitude of overriding what I was saying about my needs is the very worst thing you can do with awareness of autism, I reckon.

Asking everyone else to be accepting of autism is one thing, but actually, the biggest thing I’ve had to do is accept autism in myself. I thought I was OK with it for a long time, particularly in the early months after the diagnosis. I was very (too?) open about it with literally everyone, and I probably became a bit of a bore on the subject (she says having churned out over 11,000 words on the subject in a week, and with no hint of irony). It took me years to realise that I was actually compensating for my own fears and the hurt that being undiagnosed had caused me. I railed against the man who said he didn’t want “children like that” (he was my fiancé at the time) and proudly declared how much I would love any autistic child I had.

Then, some months ago, it crashed in. I hated autism in myself. I hated it, and I hated myself for being autistic. I realised that I had been over-compensating for my autism in conversation, covering myself so that people wouldn’t find out my biggest secret, that I hated the thing that meant my brain was built that way. I realised that I didn’t want autistic children, not because of them being autistic, but because I couldn’t have had a child with a condition I hated so much in myself and not ended up projecting that towards them in some way, and that would be an intolerable thing to do to a child.

That was a long while ago, now, and I’ve been working on how to accept my autism as the defining factor it is on my brain and my life. I’m learning that it wasn’t my fault that nearly all my friendships over my life haven’t lasted, and were often a complete sham at the time too. It wasn’t my fault that I didn’t fit in, and there wasn’t much I could have done. I’m getting there, accepting who I am, finding people who I can trust enough to let them see my true self, and I’m being pleasantly surprised all the time at just how brilliant people can be over this sort of thing. I’m about to move somewhere new, and for the first time, I’m confident that I can be myself from the off, rather than hiding behind the confident front that I’m far too good at putting up. I’ve met some of the people I’ll be hanging out with already (hurrah for the folk world!), and found myself instantly accepted and, I daresay, even liked. I am more in touch with my proper self than at any other point in my life, and I have learnt that actually, autism might just be one of the best things about my brain. It gives me logic, intelligence, the obsessive tendency to pursue a single subject for a long time (which, as an academic, is often no bad thing), the ability to process facts fast, and the years of practice at reading people and situations that makes me insightful and sensitive.

Part of the reason I hated autism so much in myself was because of the rhetoric of organisations like Autism Speaks, telling the world that autism is a tragedy that needs to be cured and eradicated. It’s taken me a long time to stand up and say “actually, sod off, I don’t want a cure for being myself”, and to embrace the fact that my brain works this way rather than fighting it and trying to be normal. I had forgotten a vital thing that someone said to me during my diagnostic process. “You can be normal. You can fit in. But you will have to cut off bits of your brain to do it, restricting your natural tendencies, and it will involve sacrifices. It’s your choice, but you have to decide whether it’s worth it. You can’t be both.”

For a long time, I thought it would be worth it to fit in. I would put the effort in in public, often collapsing when I got home, in total sensory overload and unable to function. Then I realised that, actually, it’s alright to be me, and it takes far less effort than trying to be a neurotypical version of myself. I am sure that those who’ve known me over this process will have seen the change even if they didn’t register it, but I feel myself growing more confident in my autistic self all the time. I would never have dared do these blog posts this time last year, that much is for damned sure, and it still does feel a bit scary baring this much about autism and me in one go. However, I’m glad I’ve done it now. I like speaking up about autism, and the feedback I’ve had has been unanimously good and encouraging, which is even better.

It is easier to be myself in a world that doesn’t treat my self like an oddity. I am very much like other humans in a lot of ways, and in my case, I like to think my differences aren’t huge, though they are much more pronounced for some, including those who are more profoundly disabled by their autism. I want to be loved, accepted, heard, understood, listened to, and to feel safe in the world. As I said in the first post, it might just take a different approach.

That’s the end of my Autism Awareness Week 2016 series. Thank you so much to everyone who’s followed along and read these, or caught up later on. This is just a tiny part of the experience of autistic people at large, but it’s all my experience, and I understand from some of the comments that there’s plenty in there that people didn’t know previously, which makes my inner teacher go all warm and fuzzy. Yeah, I’m raising awareness, but we’re at the point where we know enough, mostly, to move on to the next bit, which is acceptance. That’s the bit we need to carry out of this week and into life in general.

Thanks for reading, and I’ll be back soon with, mercifully, something other than autism for a while!

AAW #5: Women

Blimey, only one post left after this one! Thanks to everyone who’s been keeping up with these over the week, it’s been really heartening to have the support behind me to keep writing. This is probably one of the biggest issues with my autism, and it’s also probably one of the biggest single areas of research that really needs work when it comes to autism in general.

Being female doesn’t mean that much to me, in general. I’ve never quite understood why lots of people get so hung up on it – I can see with people whose bodies and identities don’t match up why it’s a thing, absolutely, and I can appreciate that it’s an issue for people, but it’s never been something I’ve felt very able to join in on. I find myself arguing against misogyny more and more as time goes on, and I suppose I fall under the definition of feminist, but I’ve never found it a massively useful term, I tend to go with fighting bullshit where I can and not labelling it. These are my ways, and I have no problem with other people’s being different, but that’s just the way it is. Being a woman had little to no bearing on how I thought of myself for a very long time. Then I got diagnosed with autism.

There are a number of estimates about the diagnostic rates of autistic women vs. autistic men, and even more about the actual numbers of autistic women vs. autistic men. The one thing all these estimates agree on is that vastly more men than women are diagnosed with autism, and that there are probably still more men than women with autism, but that women are being seriously underdiagnosed. It’s not surprising, really, when you look at it – the original case studies that Leo Kanner and Hans Asperger used were predominantly male, and ever since then, the emphasis on men in discussions of autistic people has remained disproportionate. The research is beginning to catch up, but there’s a long way to go, and in the mean time, the problems can be huge for women who go undiagnosed.

For me, I spent my life not fitting in, and feeling constantly at odds with the world around me. I made friends with people who then bullied me, only to turn around and say we were friends really, thus dooming me to a number of long and torturous relationships right up to secondary school. I went to an all girls’ secondary school, where the pressure to fit in and be like everyone else came from even my closest friends, to the point where I could tell that at least one friend in particular was embarrassed by me. Orchestra and Wind Band were fun, for sure, and the musical aspect was a great leveller between everyone there, but it was still problematic, and I still felt there was always something I was missing that everyone else had. I have constantly put myself under so much pressure that I ended up having a full scale mental breakdown in my third year at University, which was what eventually led to my diagnosis. My entire life, I felt like I was different from everyone else, that I didn’t fit in, and I couldn’t even identify why.

I first asked a psychiatrist if I had autism when I was 10. He gave me a pretty flat out no. I had depression, anxiety, and was suicidal when I was a teenager, but that was just teenage angst, right? I had huge problems with friendships and bullying at secondary school, but again, girls are harsh when people don’t fit in, maybe just try harder. The heavy stuff came later, during the breakdown, when terms like bipolar II and borderline personality disorder started being thrown around, only to be withdrawn a week later, and for me to be told that I had to stop being so inward, and that the mental breakdown would heal itself if I went out and maybe did some volunteering (it didn’t – I was nearly hospitalised a few weeks later). Even after the diagnosis, someone suggested a personality disorder again during my latest spate of mental health problems. The inability for health professionals to see autism in women for what it really is is frightening, and the damage it causes is massive. My care coordinator has been great at trying to undo some of the nonsense with mis-applied diagnostic labels, explaining that my depression isn’t something bigger and scarier than I think, it’s just that emotional crisis affects me completely differently because I am autistic. For all his efforts, though, these things have been said, and still are said to women who might find a more accurate answer that covers more of their questions if they had an autism diagnosis.

Tony Attwood does a much better job than me explaining what autism looks like in women, but the main reason it gets missed so much, apart from the historical emphasis on men, is the tendency and ability to assimilate, cover, and apologise for differences. I “passed” for normal my entire life by doing that. Woo. Go me. I “passed” so well I might not have been diagnosed, because I masked my true self so well even in my assessment that the scores I got didn’t add up to put me above the autistic spectrum cut-off point. It was only because of what my Mum said in the interview she did about my early life and development that they concluded that I had “atypical autism”, which basically means “screw the numbers, this is what’s going on”. The diagnostic manual changed a month later, so that original diagnosis isn’t used, but I am referred to as have an Autistic Spectrum Disorder. Whatever, I’m autistic, the jargon doesn’t get me very far anyway, and if I focus on what was said by a psychologist 3 years ago more than what’s going on in my life now, I could quite validly be accused of missing the point.

I am honestly prepared to bet anything you like (apart from musical instruments) that these things wouldn’t have happened if I was a boy. My Brother was diagnosed at 7. Mum started asking questions about us both around the same time, and yet because I am female and “girls don’t get autism” (honestly a quote from someone my Mum spoke to about this), it took me 14 years longer to be diagnosed. I was bitter towards my Brother about this for a while, I admit, and I’m not proud of it because it’s not his fault. We’ve smoothed it over now in any case, but the discrepancy still exists.

Really, as Tony Attwood says in the article linked above, the basic autistic tendencies are roughly the same between boys and girls, they just manifest themselves very differently. I was just as obsessive about Tolkien as a boy on the spectrum might have been, but it was marked as an interest in fantasy literature and that’s just fine when you’re a girl. I liked wearing comfy clothes with pockets and having short hair, but that just made me a tomboy. I didn’t fit in with my friends, but I wasn’t trying hard enough. These and so many other things that we now recognise as signs were completely missed, meaning that decades of support I could have had to make life easier for me weren’t accessible to me. The worst bit of it is that I’m not the only one. I know people who went through similar mental struggles to me and have come out the other side, finding their autism diagnosis, whether self-applied or professionally sought, many, many years later than I did. Many still suffer from depression as a result, and I know, certainly, that for me, it’s going to be a long time before I’ve patched up everything in my own head about this.

The research is happening now. There are books about autistic women, often by autistic women, and there are more of us talking about it by the day: parents who’ve found their diagnosis via their child’s, people like me who had a crisis early in their adult life and needed answers, younger girls whose parents finally realise that this might, after all, be a viable explanation for whatever problem is going on.

Even though autistic people are so under-represented in the media at large, there is at least one autistic woman on TV that I know of. Saga Norén in the Nordic crime noir drama The Bridge is an amazing portrait of an autistic woman, and really resonated with me. I can’t tell you how amazing it felt to be legitimised by seeing someone so like me on the TV, having not really realised these characters could exist. I don’t tend to cry at TV programs at all, I’m just not one of those people who do, but when Saga went into a fullscale meltdown and emotional collapse at the end of the most recent series, it hit me hard enough that I did. I recognised her struggle, her breaking point, the moment where she didn’t know whether living was worth it. The fact that the writers gave her someone to cling to in that moment as well was the most heartbreaking bit. Someone who understands her, cares about her, and gets that she needs what anyone needs in a moment of crisis: just someone to be there. Saga is my TV hero, right down to her amazing boots, and the fact that she exists on TV at all is completely brilliant too.

We are becoming more visible, but I’ve still lost count of the number of times someone has cast shade towards my diagnosis because they only thought it affected boys. It doesn’t, and it’s getting towards being as behind-the-times to suggest otherwise as it is to suggest that vaccines cause autism in the first place. We as a world need to understand a bit more about autism to catch up with the number of women who are autistic, so that we don’t blink when they identify themselves where we might not with a man. We need to understand that autism looks different in women, but that it is not less just because it’s the one we know less about, and it’s still the same condition and needs the same considerations you’d make towards anyone else with autism. “Looking normal” isn’t altogether indicative of there being no neurodivergence in there. It’s about time we learnt that and did something about it.

The last post in my Autism Awareness Week series will go up some time tomorrow, and then I promise I’ll stop talking about it *all* the damn time ;)


AAW #4: Functioning

I hope you’ve enjoyed the first few posts in this wee project of mine – the feedback from people has been awesome, and I’m really glad it’s not just me typing into thin air for no one’s gratification but my own! If you’ve got comments, please don’t be shy, on this one or any other, conversations are good, especially on this sort of thing. I know there are more opinions than mine, and it’s really interesting and useful to hear them – the whole point of this is to fill the knowledge vacuum around autism, including the bit of it that’s in my head, so as long as you keep it clean, anything goes.

Tonight’s post (because I failed to get my arse in gear today, again) is a weird one for me, because it encompasses a change I only just realised I need to make in the way I refer to autism, both my own and, more importantly, everyone else’s. The application of “function” labels seemed to me to be an important thing, and it was definitely a part of my diagnostic process. I was labelled “high functioning”, which basically means that I can successfully human on my own on most levels. “Low functioning” supposedly covers things like whether someone can speak, has movement issues, can take care of their own needs, and things like that. I didn’t question them until the last couple of months, but once I read the first couple of articles about why this wasn’t such a good idea, I realised I’d been on the wrong side of this one without realising for ages. If I’ve ever been in a conversation with anyone reading this and have put my foot in it, now’s the point where I’m apologising for being an idiot.

I’ve had my own problems with the idea of “high functioning” in any case, just not big enough ones to make me revise my use of the term for myself (I have too high a tolerance for things that inconvenience me). I realise that I share this with a lot of other people who’ve been labelled so. The issue is that “high functioning” basically means that we are “passing” for normal enough that people don’t register that we are still struggling. Comparing struggles between people is as pointless as saying “my headache’s worse than yours”, to my mind, but it’s still fair to observe that if someone is not observing the fact that you might need some extra support, you have more to struggle over than someone who has everything they need. I’ve also heard people use “high functioning” as a compliment, which is kinda crazy when you think about the flipside, i.e. that “low functioning” must be a bad thing, and avoided where you can (which is nowhere, if you’re already there). If what you mean by “high functioning” is that you can’t tell that I’m autistic, fair enough, but cut the crap and say so rather than cloaking it in a non-statement that shows you really don’t know what you’re talking about.

My problems with “high functioning” are thus. What is “high functioning” about being able to cope with house viewings when booked in advance, but almost passing out twice in front of a viewings assistant because they turned up unannounced? What is “high functioning” about losing the ability to speak temporarily because someone asked you too many questions in a row? What is “high functioning” about the fact that if I have a routine and then break it, I can’t function? What is “high functioning” when I have to lie in a darkened room for an entire day because the feel of sunlight on my back when I walked into my kitchen first thing was too overwhelming?

The obvious answer to all those questions is “nothing”, clearly. My levels of function vary hugely according to my situation. Give me a situation where I’m in control, I have my head together, my mental health isn’t screwing me up, the sensory input is within my tolerable limits, and people know and understand me, and we’re cooking. Compromise one or more of those things, and my ability to function as I feel I should decreases. Someone says they’ll e-mail, or be involved in something, and doesn’t come back in well over a week despite me saying it needs to happen can set me back really badly. I have to be reminded that I’ve done all I can in making it clear how quickly this thing needs to be done, and asking the other person to help me out, and even then, like today, I’ll spend a lot of time banging my head on the desk (not literally) over it because the Thing isn’t working as it ought.

The sensory issues that often come with autism are huge, for me, too. There’s way more to write about it than I can put in this one little post, and it really deserves a post of its own, but it also forms a huge part of the idea of functioning for me, so it’s going in here for now. It’s also one of the hardest things to try and explain to people, because the idea of experiencing senses in any other way than the way you’ve got for yourself is really, really hard. Imagine being blind, and trying to describe the colour blue, or deaf and describe what music sounds like. Imagine having to decide whether to go shopping because you don’t know if the light will feel too bright today, or the feeling of being totally overwhelmed because one person is whispering on the other side of the room while you’re trying to talk. Some things can be helped, like that last example, but trying to get people to understand that you really need this to happen is a nightmare. I was in charge of running rehearsals for a music group until this time last year, and I tried to explain at the beginning that I really needed people to not talk while I was talking. Needless to say, a bunch of students didn’t take this entirely on board, so I kept explaining, and asking the rest of the committee for back up. Their responses were often on the lines of “you have to expect people to chat”, and “it’s not a big deal, they’re here to be sociable”, and “you’re asking too much”. If I had been a person in a wheelchair in front of a set of steps, I would not have been asked to walk up them. Why, then, when my disability can set me back in a certain situation, is it considered OK for people to negate the need I have? I understand it’s hard for a group of friends not to talk when they’re together, but it’s also humiliating for me when I’m supposedly in charge and completely lose my thread because someone won’t stop whispering.

I am too “high functioning” for people to think they need to make alterations to anything, a lot of the time. Mostly, I can suck it up – the room where my Morris side practises has horrible lighting that is really taxing on my eyes and brain, but that’s the way it is, it just means I’m twice as tired when I get home. You can’t get people in town to shut up when they’re out for a nice bit of “retail therapy” (another concept that’s totally lost on me), so I put my headphones in, choose a nice, soothing audiobook, often Harry Potter because Stephen Fry, and make the trip as short as humanly possible. However, when I do ask for things, I don’t think people realise that I’ve already had to make a huge number of concessions on my side because asking the world to help me out isn’t an option. I’m still learning what I need, what works for me, and just what sensory issues mean in my life. My levels of function can’t be made into a single idea of “high” or “low” function, and it’s insulting to those in the “low” function camp who are given a label that implies they are somehow less than me because there are some things they can’t do. There’s no nuance in there for the kid who has an amazing brain, but doesn’t speak and has some physical issues they need help with. Once they can type, say, or sign, or find their way of communicating whatever it may be, does that make them higher or lower functioning?

The point of asking that question is to show that there isn’t an answer. I don’t know what the answer is to avoiding generalisations about function, and I’ve got a lot to learn on the whole subject in general, but I am in the process of modifying my speech so I don’t talk about function in that way. My Brother and I function in different ways (he would have been described as “lower functioning” than me, which is a stupid phrase – put the two of us in an industrial chemistry lab and then tell me who’s functioning better), and I can name what they are. I’m not going to on here, because he’s a fully grown adult (as much as I hate to admit it) and it’s not my place to talk about his difficulties, but suffice to say that while we both have the same label, what it means to the two of us are different things.

What most of the people who know me see is my “high functioning” self. The self that can hold conversation, do eye contact, be articulate, funny, witty, and generally pass off as a vivacious, intelligent young woman. My “low functioning” self is a different kettle of fish. I don’t very often let out the way that anxiety cripples me in public, if I can avoid it, but I know I’ve ended up outside a restaurant with a virtual stranger in the cold because the combination of curry, music, conversation, and a weekend full of strangers sent me over the edge. That’s the sort of situation where I could have stopped talking, and I don’t know how I still managed to stay in the moment. He was amazingly patient and is now a very good friend, but it’s very hard to show that side of myself to anyone, let alone someone I don’t yet know. At worst, I can end up going into “shutdown” or “meltdown”. The former is where I temporarily lose my powers of speech, but can type or write just fine, and that’s what I have to do to get anything across for a while. The latter is where everything has built up inside me and I can’t keep it in. I’ve been known to be violent during those times, though mostly towards myself, utterly irrational, screaming, crying, self harming, and at worst, suicidal. There’s nothing “high functioning” about either of those times, and mercifully, I’ve not fully melted down for a long time.

My point is that “high” and “low” functioning might be, at best, slightly useful terms to use for autistic people if you’re trying to work out what’s going on, but they are generalisations that tell you nothing about what’s going on in someone’s life. We do not, and should not, have to “pass” as “normal”, and it’s not a failure if we can’t or haven’t. The autistic child in a wheelchair who flaps their arms around and makes funny-sounding noises in public has not failed by not walking and talking. I try to smile at them, because I know that their world is just as noisy and overbright as mine, probably, and smile at their parents or carers so that they can know that at least one person wasn’t giving them the side eye and judging them. I must look like a loon grinning around the place like that, but I nearly always get a smile back from the parents, and sometimes I get a reaction from the child too. I’m not saying I want a gold star for making it as a disabled person in the real world (though if you want to, I love gold stars, so hit me up, OK?) I want to feel less pressured to keep it in when it’s hard, to feel like I’m allowed to be affected by things, be supported when it gets too much, and helped when things fall apart. There are people in my life who already do that, and they are all angels (even if halos would look damned silly on some of them). It doesn’t take much, a lot of the time, and if you’re confused as to how it should work, then all you have to do is ask :)

AAW #3: Amateur Diagnosis

Post number three. I can totally do this. I actually started this post a while back, but got stuck, and this seemed like a really good time to come back to it. I’ve already dealt with my professional, “proper” autism diagnosis in a couple of other posts (here and here), but this time, I want to talk about amateur diagnosis, including self diagnosis, and I reckon some of the ideas are applicable beyond autism too, which is a nice wee bonus.

When I say amateur/self diagnosis, I don’t just mean the sort of thing you do when you have a symptom and you Google it, then find yourself, inexplicably, half an hour later in a writhing ball of panic because Google has diagnosed you with THE PLAGUE and you’re going to die. That’s more in the line of hypochondria, which is still problematic, but not what I’m talking about here. I’m talking about the thing nearly everyone I know does, where we use our experiences of <insert condition/illness here> to suggest that other people may have it.

This isn’t necessarily a bad thing. Asking someone if they’ve considered a possible explanation for a problem they’ve had can be hugely beneficial (when done right), and can sometimes put people on the right path for a diagnosis. Without amateur diagnosis, I’m not sure I’d have ever got to a professional one, so I absolutely accept it’s necessary to use observations and other people’s knowledge to get somewhere.

However, amateur diagnosis isn’t entirely a good thing, either. It takes sensitivity and care to introduce the idea of something without imposing it, and I’ve been on the receiving end of less helpful kinds of amateur diagnosis with all sorts of things. When I was 11, a friend at school asked me very directly if I thought I had autism, because I clearly had problems keeping friends and with social situations. It turns out she was right, of course, but the method of asking wasn’t the most sensitive or helpful, and it turned into a big thing in my head that I must be bad in some way for someone to have said this. I’m not saying 11-year-old logic (mine or anyone else’s) is flawless, far from it, and bearing in mind she was pointing out problems with my friendships at the time, it’s natural to assume that this friendship was caught up in all that too, which is all by way of saying it was complex. I wish I could tell her she was right in the end, even if the conversation itself wasn’t great at the time.

Another situation I know of was where someone was told by their (now former) partner that she clearly had autism and should get it checked out, and said partner refused to accept that she didn’t want to go there despite being told in no uncertain terms. This is, I think, the worst of amateur diagnosis, where someone not only tries to impose (rather than suggest) a label on someone without the due care or qualification to do so, but also refuses to accept that the person doesn’t want this label even if they might have the right to wear it. This really highlighted to me the importance of how we perceive ourselves when it comes to diagnoses, and what other people’s opinions have to do with that (to which the answer is “not that much”, in the main). Maybe the person who got amateur-diagnosed with autism would get a diagnosis if she went looking, maybe she wouldn’t. Any opinion I have on the matter (and I’m an opinionated person, so you can bet I’ve got one lurking somewhere) is absolutely irrelevant, and the same goes for anyone else’s opinion too. As I’ve said before, diagnosis is only worth anything if it means something for how you live your life, and if knowing what’s going on will make it easier or better for you to live the life you want to.

My Mum and I amateur diagnose people all the time. We claim (probably spuriously) to have what we call The Antennae, which allow us to detect autistic traits, in a similar way to the idea of gaydar. We’ve got a look that says “are your antennae going right now? ‘Cause mine are”, and we exchange it frequently. I’ve no idea if we’re right, or if the people who make our antennae flicker give a crap either way, and we certainly don’t go around telling them about it. But it’s a habit we have, and I suspect it’s not just us two. We all have our experiences of all sorts of conditions, illnesses, and whatever, and the power of the internet to educate us on whatever we want only makes our powers of amateur diagnosis seem more potent.

If I wanted, I could amateur-diagnose anyone with anything by saying “you have these symptoms, and this condition links all of them, so you have it” using information I pulled from Google and possibly my backside. Obviously, that’s utter crap. I have no medical qualifications, I have a music degree, and I have no authority whatsoever to impose a diagnosis on someone else. That said, my experiences of the things that have happened to me, particularly in terms of mental health and autism, do give me information that may help someone else find their own diagnosis if they need or want it. Mum’s experience of autism with my Brother and others, and her unerring belief that there was something about me that was being missed led to my seeking diagnosis, with her support all the way. In a way, she amateur-diagnosed me, not in a way that I expected to carry weight on its own, but in a way that gave me enough momentum to go forward and ask the question of professionals who could help me.

It’s a fine line to tread. It’s hard to see someone suffering or struggling with something that you recognise and they don’t, especially when they refuse to accept the idea. Mental health stigma has a lot to answer for, and that’s another treatise for another day, but it fights directly against the attempts of those who’ve struggled to help those they care about be aware of the potential thing that might be happening to them.

My own amateur diagnosis experience has been largely helpful, to be honest. After all, what are parental suspicions as to what might be going on with their children if not a form of amateur diagnosis? Even if it’s just “I think there’s a Thing, but I don’t know what it is”, it’s still the act of attempting to draw links between issues and factors and understanding that something might link them, whether or not the parents know the name of what they’re looking for. Without my parents’ and then my own suspicions about what was going on in my head, I would never have looked around, and never got to the point where I wanted to know the name of my Thing. That said, the search for what was going on wasn’t easy. The “amateur” bit of amateur diagnosis was rather disliked by the teachers at my secondary school, who tried to problematise my Mother rather than solving my problems. Conversely, as far as the psychologist was concerned, my Mum’s experiences were actually a really valuable part of the diagnostic process when talking about my early childhood, and in the form of the interview she did, they were what made the diagnosis secure in the psychologist’s mind.

I guess it comes down to what you want diagnosis to do. If you’re in the life you want, and have come to the realisation that your brain might be built in such a way as to make you autistic, it isn’t always that important to get a psychologist to corroborate that. There are at least two members of my family in this category, who understand themselves in terms that help, but haven’t necessarily “gone professional” for a diagnosis. They have worked out for themselves what they think is going on, and are living their lives as they want to, without the need for further labelling. I, on the other hand, wasn’t in the life I wanted; I was mid-breakdown, suicidal, in an abusive relationship, and desperate for answers. The diagnosis gave me answers that I needed, that I’d been looking for my entire life, and are helping me to live as I want to.

Experience does not give one the right to amateur-diagnose people. It gives you the responsibility to listen to someone, and if they say “I think this might be a Thing, what do you think?” to reply honestly, answer their questions, and do what you can to help. It gives you the knowledge to talk about autism with someone who thinks they’ve got traits of autism but isn’t interested in actually seeking a formal diagnosis, and to acknowledge where they are and understand that diagnosis is a personal thing that you don’t get to mess with on someone else’s behalf. It gives you the understanding to wonder about a person, and then put the amateur diagnosis away until such a time as they want to talk to you about it, which might well be never.

What it does give you the right to is a voice, and the confidence to answer questions on what’s happening to you, what’s gone before, what’s coming up ahead, and whatever people might want to ask. It also gives you the right to say “this is me, no matter what I choose to call the thing that makes me so, and even if I choose to call it nothing”, and to tell people to shove it if they don’t approve or accept your choice.

Amateur diagnosis should come with care instructions. “Handle with care. Spray from a sensible distance. Results may vary. Keep out of reach of bigots, overly opinionated people, and people who aren’t interested.” Maybe it does, and we just haven’t read the instructions.

AAW #2: Integration

Post number two for Autism Awareness Week. If you missed the first one, I’m trying to write one a day for the whole week (minus the first day because I didn’t get my arse in gear), because frankly being autistic during AAW pretty much gives me carte blanche to rant about autism and stuff, right? Ok, maybe not quite that, but you get what I’m saying.

Today’s post sort of follows on from yesterday’s, and is mainly about how the world goes about integrating people with autism, particularly in schools, but also elsewhere. It’s a laudible thing that we’re no longer just separating all the “different” kids and packing them off elsewhere, for sure. My Brother was in the first school year of full integration, which meant that in our area, schools had to be willing to accept kids with special needs if they came. Obviously, for some children, this was never an option, but for kids like my Brother, it was brilliant. Without the integration move, he would probably have gone to a specialist school for autistic children, which we’re all pretty sure wouldn’t have been the right thing for him at all (though it is, without question, the best place for lots of autistic kids). As it is, he went through mainstream school just like me and my sister, came out with GCSEs and A levels just the same, and has a degree. There’s no question for us that it was a great thing that he’s been able to do this sort of thing, and all the family are unspeakably proud of him. There was at least one child in his year who came to the school on the same integration grounds as my Brother, but in the end it was decided that it was better for him to be in a more autism-tailored environment, and from the little I heard later on, he did very well there too. Integration has its limits, or rather, some kids have their limits (as opposed to limitations, which just sounds mean), and a mainstream environment falls outside them, and it’s good that that’s being recognised. One-size-fits-all, as anyone who’s tried to buy cheap tights with such a label will tell you, is bollocks, and usually doesn’t fit anyone.

However, for those who do go through the main stream, there is still a lot of one-size-fits-all mentality to get through. As someone who went through the main stream with a hidden neurodivergent thing going on, I can definitely vouch for its limitations, and I’m far from the first in line to do so. That said, I too have come out of school and University, just like my Brother, with GCSEs, A levels, and a degree. But the thing that really gets difficult is when the places that are doing the work towards integration don’t talk to each other, and recognise that they’re going to be passing stuff along to each other. The University were excellent at sorting out the special arrangements I needed to sit my exams, complete my work, access everything I needed to, but also have provisions made so that these things didn’t cripple me mentally (which, frankly, the whole degree experience did anyway, but that’s not their fault). However, these things were practical, and relatively easy to sort – I was having the same things as other people, just for different reasons, and in a different combination. The thing that my College, in particular, seemed to struggle with was the idea that I could present so well, be articulate, and not show what was going on in my head. It made it very hard for some of the higher-ups who dealt with my support to work out what was going on, because I was so well-adjusted in some ways, but utterly unable to cope in others.

This combination of factors is where I think the problem with integration lies. Universities are getting more and more students coming to them who might not have gone to mainstream schools under the old system, who are perfectly capable, academically, of accessing a University course, but need more adjustment than ever before. The gap between disabled students’ ability and their needs can be huge, and looking at how both me and my Brother fell into that gap, it seems that Universities have been somewhat caught on the back foot as to how to deal with the students they inherit.

This gap will get bigger, I’m pretty sure. As integration gets better, and more children are enabled to capitalise on their mental and intellectual capability without being hampered by limiting diagnoses, or schooling approaches that put them in environments that don’t allow them to be entirely who they are. Things would have been very different if my Brother had gone to an autistic school, I’m pretty sure, and I doubt he would have racked up the achievements he has. He’d have got different ones, for sure, and my parents would have been no more or less proud of him, but hypotheticals are something my A level history teacher warned me about, so let’s not go there.

After University, the gap is only set to get even bloody bigger. The hunt for jobs where autistic people can work effectively, dodge the various complicating factors we encounter that others may not, and be truly ourselves without having to conform to a damaging extent is just about less comfortable and risky than walking across a minefield without a metal detector. If we are able to get through school, college, and University, but then fall at the hurdle of getting a job afterwards, integration still has a way to go. Obviously, it can’t happen all at once, but there’s a lot of catching up to do before the rest of the world becomes as inclusive as schools have to be. The moves between school and university, university and life, are big enough to begin with, but when you are moving between two vastly different ideas of inclusivity, and from an environment where you are who you are without question but with encouragement and equal treatment to one where you’re just expected to muck in with everyone else without support, it’s no wonder that falling in the gaps is so easy to do.

Integration into the main stream is a good thing, like I said above, don’t get me wrong. But it’s not easy or simple, and there is still a long way to go after only 15 or so years of trying to get it right at all. The main stream goes through life, and if the acceptance and support that autistic people like me and my Brother, who don’t need huge amounts of “care” per se, and can function on our own as adults (for example, I live alone, and even do my own laundry when I get round to it) suddenly evaporates at the age of 21 when we leave University, we’re kind of buggered. I know there’s the school of thought that says “belt up, get on with it, we all have to do it too”. If you’re one of the people who’d say that, you’re entitled to your opinion, but I’m also entitled to ask you (politely, because I’m a polite person) to shove it. Transitions are notoriously hard for autistic people, but when we’ve been guided through them our whole lives because we’ve been given the support we need up to that point, the fact that we can’t suddenly magic our brains into being able to cope with not only the transition itself, but also the move from support to no support, isn’t actually that surprising.

I seem to have got a little angry there. I’m not sorry. The world is disabling to autistic people, and people with all sorts of other neurodivergent things going on, all of which I couldn’t possibly hope to name, but are equally worthy of integration, support, love, and help. The world is learning to work with us, and that’s awesome. People are learning to see us as people first, labels second, which is also amazing, and gives me hope. However, it’s not happening fast enough to catch up everything all in one go. That would be too much to ask, but it’s not too much to ask that being treated like equal human beings can continue out of the schools where we learnt to treat ourselves so. I was integrated without even knowing I needed it, and I wouldn’t be where I am without that. I was taught to value people, see who they are, walk in their shoes, make things easier for people where I can, even if it means a bit of inconvenience to me. Integration is for everyone, not just employers, universities, and schools. Realising that people have been integrated, rather than whitewashing over what makes them different, is the key. You can’t help my difference by ignoring it (I’m sure I’m quoting that from somewhere, please comment if you know where!).