Note: This is a veeeery long post! Like, reading time at least 25 minutes, haha. Just so you're aware before you start :)
As some of you know, back in late August, at the end of a two-and-a-half hour long conversation which involved answering literally a hundred in-depth personal questions about me and my life, I was diagnosed with autism. I wanted to write a blog post about what that means for me, what goes on in my head, to help people understand. Obviously I've had it my whole life, but my family and I only started to think of it as a possibility a couple of years ago, and I was put on the waiting list for assessment back in January this year.
Why has it taken 27 years for this to be diagnosed? Because I'm not stereotypical; I don't exhibit the more severe and recognisable traits and behaviours that most people think of when they hear the word 'autism'. Many autistic people don't, particularly girls and women, but until recently many of the assessment tools used were based around these things, and people who didn't exhibit these behaviours were considered to not have autism. And because girls and women have literally evolved to be more social and adaptive than boys and men have, anyway, we develop coping strategies and mask our feelings and learn to do what we think is expected, so it's even more difficult to spot. The knowledge and understanding hasn't been very widespread. My mum and sister both have many years experience working with people on the autistic spectrum so were able to eventually recognise the signs in me, but it still wasn't until my mid-twenties, and many people aren't as fortunate, and go through their whole lives struggling, not understanding, often developing anxiety and depression (as I did), or being misdiagnosed and put on treatment for other things.
The assessment day was tiring - an in-depth, very personal and thorough questioning lasting nearly two and a half hours. ("Questioning" sounds like an interrogation, haha; it wasn't, the lady doing the assessment was lovely and it just felt like a very long chat.) But at the end she said she didn't even need to think about it or confer with her colleagues - I am a textbook case. She got a bit teary, and explained that she often does because she knows how much it means - to finally understand, to know that there's nothing 'wrong' with you, to know the reasons for things. My mum and sister came with me and they both started crying too. I was really relieved and pleased. While of course it doesn't change anything, it explains a lot.
I received the final report last week, and it gave my scores for each of the three assessments used to help determine a diagnosis. In one, where a score of 6 or above out of 10 may indicate autism, I scored 9. In another, where a score of 65 or more out of 240 is an indicator, I scored 139. In the third, the Cambridge Behaviour Scale Empathy Quotient, where the average score out of 80 for the general population is 47 for women and 42 for men, I scored just 15 (hahaha!). So it's pretty clear!
So what does it explain, why does it make sense? Autism is different for everyone, so here's what it means for me.
"Autism is essentially a condition which affects social interaction, as a consequence causing significant anxieties in people with a diagnosis, due to the social requirements of current society."
I have always struggled socially - making conversation, getting to know people, making friends, etc; I've always been on the periphery, on the outside looking in. At toddler groups and preschool, I didn't play with the other kids, I would just stay by myself to the side of the room and either watch the others playing, without joining in, or play by myself with whatever toy was closest. Apparently when I used to play with my sister, I'd just walk off if I wasn't interested in what she came up with. I was happy doing puzzles or reading books and would stay very focused on those. All through school I only ever had a few friends, mostly misfits somewhat, and my secondary school friends and I didn't really hang out together outside of school; instead I spent most of my time watching an awful amount of television at home, mostly a few certain shows I would watch avidly. I was rarely invited to birthday parties and when I was I didn't get excited about it (I only remember one where I did). I was bullied for my first few years of secondary school. College was a horrible time, I was incredibly lonely and anxious, having only one or two friends, and spending most of my time on my own and away from the campus if I could, deliberately avoiding the busy areas. I've never really been interested in doing things other people my age do, and I've always found it easier to get along with people much older than me than with my peers. I come from a close family but have only started to join in with family activities and gatherings in the last couple of years. I never mingle. Everyone (including myself) has always just put my social difficulties down to shyness and reserve, and my parents tried so hard, so many different things, to encourage me to mix with others and to help, but nothing worked.
I'm actually not shy, it's not a matter of just not having the confidence to talk, it's not knowing how. I say nothing because I literally have nothing to say. My mind is blank most of the time. When people have suggested things like "just ask questions!", they might as well be asking me to speak Russian, it's just not something I can do. 99% of the time I just don't get questions or opinions or comments come into my head. My thoughts are vague senses rather than words, and all jumbled up like a Jackson Pollack painting. Nothing is intuitive. It's always baffled me how everyone else can so easily have conversations, flowing from one person and one topic to another, someone jumping in with a comment here and there; I wonder how they do it and have always wished I could do it too. Even on the rare occasion I do feel I have something to say, my brain can't process it quickly enough - turn it from a vague sense to words to a sentence to speech - before the subject has moved on. I can often get by one-on-one if the other person is more talkative than me, but in group settings I just watch and listen, I can't join in. If I'm asked a question then I'll answer, but it's only recently that I've started to learn to elaborate and give more information, rather than simply answering the question with a one-word response. I don't know how to "think" in terms of consciously consider something in a process in order to reach a result. All I can do is wait for things to pop into my head. I can talk about myself easily enough but I don't know how to get other people to talk about themselves or other subjects. Even if I want to know more about something or someone, I can't identify what specific things I want to know, I can't think of questions. I don't like small talk but don't know how to move beyond it and connect with people. All this has meant I've often been too afraid to ask if someone I'm interested in being friends with would like to meet up.
I am extremely reserved. Even my mum, who knows me best, has a hard time telling what I'm feeling. I've been told by people in the past that I'm too reserved and too quiet. To them, these attributes are something that is a conscious choice, the presence of a desire to hold back what I'm thinking or feeling, which, with time and practice, could be pushed through and un-learned. Whereas actually, for me, it's simply the absence of an impulse to express or do something. In terms of feelings, it's also that I usually can't identify what I'm feeling let alone know how to express it or what I need, so I keep a lot bottled up. As well as not expressing emotions, it means I'm often very still and silent, which can make people uncomfortable. My sister loves to put music on all the time, and sing and move along to it when she can. When we're in her car she's singing away... and I sit there as still as a statue. I feel no impulse whatsoever to join in or even dance in my seat a little, even if I like the song. I wish I could. If I'm on my own or at a gig I sometimes do dance or at least move my body a bit, or tap my fingers or my foot, and sing along under my voice. But I don't listen to music of my own accord very often anyway, I'm very comfortable with silence. At concerts or rugby matches I don't feel like standing up with everyone else, or whistling or shouting or whatever. When I find something funny I generally just smile or have a quiet little chuckle, it's not often that I laugh out loud, that takes a lot. My reserve and lack of facial expression often means people think I'm bored or in a mood - when I worked in retail, customers often used to tell me to "cheer up" or "smile", which really annoyed me.
I struggle with abstract language and connotation and can't read between the lines. I need things to be clear and direct and simple. I can't think for myself, I'm not very imaginative, and can't "think outside the box". In school and college I always struggled with the sort of open-ended questions you'd get in an English exam, where you needed to either interpret something, give your own opinion, explain or describe. I hated them. What was the author thinking when they wrote this? Interpret what could have been meant by this. Describe the importance of this. How the hell should I know?! I also struggle with things like when you're given a question which is in reality three questions and you have to answer them all at once (like in job interviews, too) - I need them broken up and to answer them one at a time. I did well in my GCSEs because most of my subjects included coursework, which I could take my time over, use notes to help me form something, get feedback from an initial draft and improve upon. Multiple-choice tests are fine. But in college all but one of my subjects were completely based on written exams, and I failed most of them.
In terms of communication, I prefer written over spoken, so emails and texts over phone calls, and if I have to make a phone call I generally plan and practice what I'm going to say beforehand. However, a lot of meaning is lost without hearing someone's voice or seeing their body language, so conversations over text can be difficult and frustrating, and I've often been uncertain as to what somebody means. I often take things literally, and miss what someone is trying to say. I only understand commonly-used figurative phrases if I've heard them before, I can't work out new ones by myself, and I never use them. I never make jokes, and am often slow to understand ones other people have made.
I like structure and routine and a process to follow, etc., and change can really bother me. I like to plan things in advance, and to know or at least have an idea of what's going to happen. I don't do spontaneity and last-minute things, I like at least a few days notice. I have very good attention to detail, and enjoy tasks that let me use that strength. The flip-side to that is that I can sometimes focus too much on details and not be able to see or understand the bigger picture.
I don't really know when something might be considered rude, or polite, or too honest, or weird or odd. I can be very blunt and rude without realising that's how I come across, and I feel surprised, upset and frustrated when people get upset or annoyed about it. In my mind I'm just being open and honest, and since becoming aware of this have actually tried very hard for things to not come across as blunt and rude. I never know when it's better to just not say something. To me, honesty is the best policy, even if it's tough; if everyone was honest then a lot of misunderstandings and conflicts and upsets could be avoided. If it was the norm then people would just shrug things off and move on. But also, I often find it very difficult to put things into words and to know how to say something, so get a bit stressed out because I want to say something but don't know how.
Sympathy, empathy, and compassion are things that don't come naturally to me at all, it's very very difficult. I can't put myself in other people's shoes, can't tell what someone might be thinking or feeling unless it's outwardly very obvious or I'm told. (But I also just don't look at people closely enough to try and discern something.) For me to be able to understand, I have to see or hear or read very in-depth, detailed, personal accounts, or think really hard about it. So I'm not someone who gets emotional easily, for example when watching films. Things that other people have very strong reactions to, don't usually bother me.
...Let me give you an example, to really let you into my head. September 11th 2001. I've never forgotten finding out about those NYC terrorist attacks, but not for the same reason most of you haven't forgotten. I remember it because I felt nothing. I didn't care. I literally shrugged and said "Oh" as if it was a weather report. I was still only nine years old then, but the same has been the case since, whether they were global headline events caused by humans or by nature, or more personal-level news. I know in my head that whatever has happened is awful, but I don't feel anything. I know how I should feel, though, so for the last couple of decades I've just felt like a horrible person and have been wondering what on earth is wrong with me. I've avoided conversations about those things because I don't know how to pretend and don't want to admit that I don't care because people wouldn't understand. I didn't understand. I don't tend to have an emotional reaction to things unless they're happening to me. I'm beginning to see that very occasionally I feel things with people I'm very close to, but that's really quite new. But it's another matter entirely when it comes to animals and the environment/nature, I do get very upset and angry about harm to those.
Also (and this is something else I've felt horrible about for ages), while I'm glad to meet up with and spend time with my family and friends, I'm not usually bothered by somebody's absence or by spending a lot of time apart. I don't really know what it feels like to miss someone, which sucks.
I overthink about everything, and ruminate. I find it almost impossible to make decisions, which frustrates me probably more than it does other people (and I know it frustrates other people a lot). I agonise over the smallest things. Making a meal plan stresses me out because of that, as does shopping. I often spend ages trying to decide whether to buy something or not, and more often than not don't buy it. If I don't buy it then I tend to wish I had, and if I do buy it then it's not very long before I regret it. If I need to make a decision on the spot then I get flustered. Some people have tried to help me get better at making decisions by basically insisting on me doing so, saying things like "You're going to make all the decisions today, everything we do is completely up to you!" and that's frustrated the hell out of me. I understand their good intentions, it may indeed get easier with practice, but it just adds to the pressure I already feel. I'm willing to take my fair share of responsibility for decision-making, as long as other people accept that it will take me longer than it might take them. This overthinking and my difficulty with long questions and identifying things means job applications are often extremely stressful - just one can take many, many hours, if not days, and I stay up late into the night trying to get it done, making myself tired which doesn't help, and I usually turning to someone else for help in the end (and they help me get it done in like half an hour).
I've never really been comfortable with physical contact, I've never initiated any. It's not necessarily uncomfortable, it just doesn't come naturally. I'm used to simple greeting hugs and kisses with close friends and family, they're fine, but generally I prefer standing back and giving a wave or smile and verbal greeting. Even when I've been really upset and crying, I don't go to other people for comfort and ask for a hug, although I'll sometimes accept one. If someone else is upset I don't feel like giving them a hug or anything. Showing physical affection in relationships is something I've had to start to teach myself to do, I have to think about it. While I've dated a few people, it's never worked out, I've never had a boyfriend.
When it comes to what I eat, thankfully I've grown out of most of my fussiness. When I was very young I mostly just ate apple and yoghurt; for many years I refused to eat onions, mushrooms, kidney beans, butter or spread, gravy, cream, custard, mayonnaise, and probably other things I can't remember; and it wasn't until I was 21 that I drank anything other than Ribena. Now, I love food and eat a wide variety. But I do want to have a healthy and nutritionally balanced diet - hence why trying to do a meal plan can stress me out, because it bothers me if there's more than one meat dish per week and not enough fish or veg, for example. I also do things like, if I've had a portion of a certain fruit or vegetable, I won't have another portion of it later that same day - for example, a second glass of orange juice, or some cucumber in a salad with dinner if I had cucumber with salad at lunchtime.
If I'm talking about something and am interrupted and the conversation goes off on a tangent, I feel like my turn has ended and I close off, I won't carry on with what I was saying unless I am invited to do so. E.g. If I'm telling someone what I did at the weekend and they interject with a comment or question and the conversation goes off on a tangent for a few minutes or more, I won't then pick up where I left off and tell them about the rest of my weekend unless they prompt me, even if it's something I enjoyed or was interested in and would like to talk about. If I am talking, I can't tell if someone gets bored or loses interest. When something is really bothering me and I need to communicate that, I have to keep going till I'm finished and have said everything I have to say. Usually this is online via text-based messaging, so other people can feel a bit bombarded with really long, sometimes emotional messages. But I don't know how to not do that, I'm not able to judge what other people might find "too much".
I can't do more than one thing at a time, like have a conversation and cook dinner; I have to pause one activity to be able to do the other, or I get flustered and confused and they both take longer. I also find it very hard to concentrate on things if there's noise or activity in the background, such as the radio or music or a conversation, I can't tune things out.
I have a shockingly bad memory. I usually forget things within seconds of being told / hearing / reading them. I tend to make notes on my phone or a post-it to try and remember something, but that doesn't help. I'll remember most things at some point, but again it won't stay in my head and I'll forget then remember then forget then remember. Having been out of education for nine years now, I no longer have the ability to memorise, store, and recall at will (in fact, I don't think I really learned that skill well in the first place). I'm sure it's something I could improve a little if I exercised my memory muscle, did things frequently and regularly to practise using it (if anyone has any ideas I'm all ears) but it's a skill that I'd need to learn and practice to maintain, it's not natural. I never reminisce, I can't recall stories from my life at will.
When it comes to things like films and books and TV shows, or even real-life events, I can never really talk about them. If someone asks me what I thought of such-and-such a show last night, the only answer I can give is something like "Yeah, it was good." I enjoy things or find them interesting, or I don't. I never have any ideas about what might happen, or opinions about what has, etc. There are many films and books and TV shows that I love, but I can't have a conversation about them. Similarly, I can't describe people - if I'm asked what so-and-so is like, I can only shrug and say something like "Umm... they're nice...???"
I do what some people refer to as over-explaining (you might have noticed, haha) - giving details and background and information etc. which may not be deemed necessary by the other person or people - but to me it's just explaining. It's just what I naturally do, but if you want to apply a logical reason to it then it's because it helps prevent misunderstandings and miscommunications, because the other person or people then has all the information and context.
I find it difficult to do things that are aimless - both in terms of doing a task without knowing or understanding the reason for it, and in terms of just wandering around aimlessly. Part of me really likes the idea of being in the RAF, but I'd probably hate being in the military because you have to accept orders without question, often without understanding why you need to do whatever it is. When I travel, I can't just wander aimlessly and explore and see what I come across, I need to have a destination and a route to follow or at very least an end point to find my way to with a map, and a plan of what I'm going to do.
Being generous and sharing things isn't a natural impulse. Only occasionally do I feel like doing it, want to do it of my own accord. I think my sister's a little offended by my keeping a box of chocolates and personal treats in my room, because she keeps hers in a kitchen cupboard and tells me I'm welcome to have some. That's very kind of her and I appreciate it, but I only rarely take her up on that offer and balance it by letting her have some of my chocolate when she runs out. I find it very difficult to let myself spend money on a treat, so if I do allow myself to do that then I want to enjoy whatever it is as much as possible for as long as possible. If I share it then there's a risk I'll end up having the smaller portion and that I'll run out of it sooner (and therefore need to spend money on a replacement sooner). To me that's perfectly reasonable, but other people see it as being greedy and selfish. And sometimes I do feel greedy and selfish, I'm ashamed of how difficult I find it to spend money on or be generous towards the people I care about.
I don't have any sensory issues, (although I do sometimes get inexplicably very bothered by music being on when I don't feel like listening to it, maybe that's something), but I do have some comforting habits. I play with a strand of hair on the left side of my head, countless times every day; I like that it's soft and smooth and smells nice, haha. Likewise I'll run the fingertips of one hand over the fingernails on the other, because they're nice and smooth. I keep an elastic hairband on my right wrist and play with that a lot. If I'm among a group and am asked a question, I pull my hair up into a bun as I start to answer, or if I'm sat at a table and have to speak I often lean forward and cross my arms on it. They're automatic, unconscious things, probably to diffuse my nervous energy and as a protective gesture.
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Many people will be able to relate to something I've written, see something in themselves or maybe in someone they know. Some people say things like "everyone has autistic traits" - and it is true that everyone has some quirk, an oddity, particular habits, things they struggle with, or whatever. But we also have to be careful to not misunderstand, underestimate, or invalidate just how different and difficult it is for people with autism. Understanding and navigating the world and all the unwritten, flexible, context-dependent social "rules" is tough enough for the mainstream neurotypical population to deal with. Things that most people take for granted and can do or deal with easily and intuitively, we find very difficult indeed, if not impossible. So for autistics the social world is a complete minefield.
Some people see autism as something that means the person is deficient in essential things, as something that needs treatment and fixing. Many other people are now beginning to reframe it as just a natural human variation and another way of seeing, understanding, and interacting with the world. Who's to say that the "social norm" is the "right" way? I like analogies, they can make things easier to understand, but I can almost never come up with them myself, so this one comes from a former colleague: Autism is just a different operating system. Like, Windows and Mac or Xbox and Playstation. Neither is necessarily better than the other, they each have their strengths and things that they're not so good at, but unfortunately most of society understands and is geared up around just one, making things difficult for the other or others.
My diagnostic report came with a list of recommended books, and I'll give one or two of those a read because, although I can recognise these traits in myself, I still don't really understand what it means. Although my head knows that I have autism, I've always been this way and it's normal for me. I don't truly understand, I don't fully know how that makes me so different to the general population, or how other people see me. I'm sure the books will also give some ideas for strategies and things people like me can do to try and make things easier for ourselves - even though many things will never become truly learned or second nature, and we're always going to have to work harder at some things than most people. I was also given a summary sheet that I can make copies of and give to people like future interviewers or employers, to let them know that I have autism so they may need to make suitable adjustments (e.g. break up a long question into separate ones).
This has been an awfully long and heavy post, and has taken me a very long time to write, so thank you to those who have stuck with it and read the whole thing. I hope it's been interesting, and has given you a slightly better idea of what it's like to be me, and what it can be like for other autistics. As I said, each individual is different, but having a better understanding of just one is a start. If you'd like to do some research to find out and understand more about autism, there are lots of blogs and articles online and videos on YouTube (including a number of good TED and TEDx Talks), and books or e-books. If anyone has anything to add, or any comments or questions, please do either comment below or on my Facebook post, or send me a message - I'd genuinely love to hear from you and know what you think, even if I don't know you personally. Also, feel free to share - it may help someone else :)
Thank you ever so much to all the wonderful people who accept me and love me as I am, and have done their best to understand and support me throughout my life, I am eternally grateful :) xx
Edit note: The original version of this post included terms like "Asperger's", "high functioning", and "mild case". Since joining the online autistic community I've learned that these are considered to be unhelpful and harmful, so have edited them out.
With autumn well underway, people had to take stock of what they had to last them through the winter. Animals were brought in from pasture, and any they felt wouldn't make it to the spring, or any they wouldn't be able to feed, were killed and the meat salted. All crops except perhaps some hardy winter vegetables would have been harvested and eaten or preserved by this time. So for many it may have been the last chance to eat many fresh foods, particularly meat, until the spring. In the Celtic calendar, where each day began at sunset, Samhain was the end of the old year and the start of the new - just as life starts in darkness, so did their days, and their years. It's also considered to be a liminal time when the veil between worlds is thinnest, a time when spirits can roam, a time for remembering and honouring the ones who came before us. The time when the Goddess dons her robes as Crone and the Horned God begins the Wild Hunt.
Side note. Halloween has become a huge commercial holiday, and, like all of them, is extremely, awfully, wasteful - roughly seven million costumes end up in landfill each year, as do around 18,000 tonnes of carved but uneaten pumpkins. It's part of a wider, systemic waste problem, but that's just not okay, is it? In doing a quick search for having a more eco-friendly Halloween, I've just come across the charity Hubbub, which works to get mainstream consumers interested in sustainability issues. Here are some of their ideas to make the time of oranges and purples and blacks, a little greener:
