Posted on April 1, 2018
I know I touched on issues with food already this week but I thought I’d go into a little more detail so those of you who don’t experience this difficulty can get a glimpse into what it’s like. Food is a massive problem for me; it’s a daily cause of stress. Where am I going to be? Will there be food I can eat? If not, can I bring my own food? Can I get away with not eating or will people notice and point it out? It’s a constant loop and that is exhausting.
As I said in a recent post, I’m incredibly sensitive to the flavour of food; add even the smallest sprinkling of pepper to a meal and I can’t eat it. It overwhelms me and I just cannot eat it. Forget spicy food entirely. So I can only eat the simplest things: plain rice or pasta, unadorned chicken or fish, and so on. I practically live on fruit and vegetables. When there are lots of different flavours, I get overloaded. I can’t describe it better than I did in my sensory sensitivity post: “It’s like throwing a load of different coloured paints together: you don’t see all the different colours, you just get one new colour and it often isn’t a nice one.”
I’m also very sensitive to texture; there are very few things that don’t trigger my gag reflex. I’m sure all of you have experienced that at one time or another so you can imagine how desperate I am to avoid it. I remember a particularly bad experience with tofu; I’m actually shuddering just thinking about it. I have a similar problem with wet foods touching dry foods. It triggers the same response. So while my family – who are all fairly adventurous when it comes to food, at least from my point of view – flip through a library of cookbooks, I eat simple meals with ingredients that I can separate and I eat them over and over again.
Honestly, I don’t mind that. It’s safe. It’s comforting. It’s the pressure to eat ‘like a normal person’ that’s stressful. Going to restaurants and eating in public is a major anxiety: it’s very rare that there’s something on the menu that I feel able to eat and asking for something simple feels impossible. I find asking for anything difficult and drawing attention to this issue is something I try to avoid if at all possible.
As a child, I was labelled a picky eater and strongly encouraged to try different food. I know that my family and friends were just trying to help me: they were trying to prepare me for a world that would expect me to eat complicated food. But instead of it getting easier, it got harder. So eventually we reached this uneasy stalemate. But getting a diagnosis made a massive difference: it gave people an explanation, made them realise that it was something I couldn’t help. It took the pressure off in a big way. But as important as that is, it hasn’t fixed my problems with food. And as much as I struggle with it physically and struggle to get the right nutrition, it also has a big impact on my mental health.
People make assumptions when they hear how little I can eat. They think I’m being picky or deliberately difficult and see me as an inconvenience. I know that it’s not my fault and that it’s a valid reason to struggle but I find it incredibly embarrassing that I can’t eat like everyone else. I feel like it keeps me from really becoming an adult, especially when so much socialising revolves around the consumption of food and drink. It feels like a weakness; it’s something I’m ashamed of, which definitely feeds into both my body image issues and my depression, as well as my anxiety. When I get really low, as in dangerously low, food becomes even harder and I just lose the will to eat all together.
I vividly remember being about ten years old and reading a magazine article about a girl who had to have intravenous nutrition for medical reasons and I found myself wishing I could have the same, wishing I could not eat because it would be so much easier. And I still relate to that. I would give anything to be in control of this, rather than it have control of me. I wish I could choose what to eat, rather than navigate around the things I can’t. I wish I could eat according to my beliefs instead of having to worry about whether I’m getting enough protein or calcium or whatever (I would love to be a vegan, or even a vegetarian, and often feel guilty that I’m not but health wise, it’s ill advised when there’s already so little that I can eat). I wish I didn’t have to be afraid of blowing a sensory fuse, of getting completely overloaded, which can trigger a meltdown. I wish I could enjoy food. But I can’t and I’m scared I never will.
Category: anxiety, autism, body image, food, mental health Tagged: actuallyautistic, asd, autism, autism awareness, autism awareness week, autism diagnosis, autism resources, autism spectrum disorder, autistic, autistic adult, eating, food, food sensitivity, health, senses, sensitive, sensitivity, sensory, sensory overload
Posted on March 19, 2018
Trigger warning for self harm. Please don’t read this if it’s something that will upset you or trigger you. I only want this to be helpful, never harmful. I also want to add that, while I’m not promoting or endorsing it, I’m never going to say, “Just don’t do it.” It’s just not that simple. My hope is that more openness on this subject will make it easier for people to access support and therefore not feel the need to do it.
It’s been on my to do list to write more about self harm ever since I posted the first piece. It’s one of those things that I will never get tired of talking about, never get tired of raising awareness for. There are so many misconceptions around it. I mean, I get it: there’s something inherently un-understandable about wanting to hurt yourself, unless you’ve gone through it. And even then, it’s massively complicated. Feelings are weird and pain is weird; it’s not surprising that people struggle to make sense of it. But I’d like to think that things will get better, hopefully sooner rather than later.
I was inspired to write this post after watching a YouTube video, ‘Living With Self Harm Scars’ by Claudia Boleyn. I’ve been watching her videos for more than a year now and I particularly love her videos about mental health. Borderline Personality Disorder (BPD) and self harm still aren’t commonly talked about so to find someone describing their experience, both positive and negative, and giving advice is invaluable. And to find someone so thoughtful and eloquent is even better. I really relate to a lot of what she says.
She’d posted a video in which she wore a short sleeve shirt that exposed some scars from self harming and had received several messages about how validating it was to see someone with visible self harm scars, without shame or drama. So, as a response, she’d decided to make a video discussing the importance of living with these types of scars, which I found both interesting and useful, even as someone with ten years of experience with self harm. She put into words so many emotions that I’ve felt but for a long time couldn’t vocalize. Had I had something like this when I was younger, life would’ve been very different.
The video isn’t necessary for the rest of the post to make sense but I really recommend watching it:
Some of the things she says are so true it’s painful.
One of the biggest things about self harm is the release you get from doing it. My emotions get so strong sometimes that I feel like there isn’t space for anything else in my body, in my brain. There isn’t the space for my lungs to expand; I can’t breathe. It almost feels like the emotion is crushing me and the only way to survive is to open up my skin so that it can escape. It’s like a pressure valve. Once I’ve done it, I feel like everything stabilises and I can think more clearly. If there’s a problem, I can deal with it and if there isn’t and it’s just an overload of emotion, I can take care of myself a little better than I could if I hadn’t. As heavy as it sounds, Claudia describes it as ‘a way of not killing herself,’ which is a feeling I can empathise with. I’m sure many others can too. I’m not saying it’s a good thing and I’m not encouraging it. It is NOT a healthy coping mechanism. But that logic isn’t very persuasive when you’re dealing with such overwhelming emotions. Claudia also talks about this: “It’s not good for you in any sense… but it’s something. It felt like doing that at least proved that there was something there… And it just felt like this huge build up of feelings and I had to do something to get rid of it and doing that… was something.” I can completely relate to that and I think that’s a feeling that is often exacerbated by how difficult it is to get a diagnosis because having something is better than having nothing.
In my experience at least, trying to cut myself off cold from the only thing that helps me get through doesn’t help; it just makes the need worse and then there’s potential for me to do more damage. So I do my best to be safe while working on my issues in therapy so that one day, I can stop because I’m okay and not because I’m suppressing the urge. Because if that’s the case, I’ll always come back to it. To quote Claudia: “If you’re a self harmer then I think it’s always in the back of your mind as, like, a coping mechanism… The problem is: it’s always there so you always have to avoid it and avoid triggering it.” To give up self harming is a really big ask, and an even bigger one if you’re trying to do it without support. And if it’s too much for you, or for you to do all at once, that’s okay. I don’t feel ready to stop but one step at a time. The fact that my therapist supports this is a huge deal to me and it’s one of the things that told me that she was the right person. This has greatly lessened the pressure on me and has helped both me and my family to work through it a bit. I used to feel so guilty that I was hurting or upsetting them so I hid it and that was doing it’s own kind of damage. But now that we have a plan, now that we’re moving in a forwards-like direction even if it isn’t always easy, everyone seems to be coping with it better. I can’t imagine what it’s like for them to see me in that place but you can’t put that on top of the emotion that makes you want to do it; it will eat you alive. I think the only way forward is to try and talk about it with someone and do what you can to avoid it if possible.
I don’t have quite the same experience as Claudia does. That’s fine. Every response to self harm is a valid response. However you feel about it is okay; it’s your struggle. She talks about feeling annoyed and upset about having self harmed and wishes she hadn’t done it whereas I’m not (yet?) in that place. She talks about how it releases all that feeling but then you wake up the next day and feel like you’ve let yourself down. But, while that is quite a negative response, the way she talks to herself is very positive: “I’m just taking it as a stepping stone and saying, ‘Okay, you took a step backwards but you can take five hundred more steps forward. It’s fine.’” She talks about having a certain pride about them because they’re proof that she got through a really tough time. She can look at them and feel compassion and forgiveness for the version of herself in those moments: “It’s a part of me and it’s a part of my past and that’s okay. And I wouldn’t erase it and in a way, I wouldn’t want to because I’ve learned so much going forward.”
For me, self harm is usually a survival strategy. It’s getting through a moment that I feel like I can’t possibly get through. Maybe it’s the worst possible way to get through it but it’s better than not. So when I look at the mark the next day, or the next month, or the next year, I remember that moment: I remember getting through. I remember feeling like I can’t survive another second and then I remember the calm afterwards. I remember that I did what I had to do to survive. I wouldn’t say I’m proud of that – or proud of the scars – but I’m certainly not ashamed of it. Maybe one day I’ll find something that gives me that feeling without doing any damage to myself. How wild and glorious would that be?! But that’s the end goal, not the next step.
My other use for self harm is to mark a traumatic event. I think one of the hardest things about struggling with your mental health is the fact that people often can’t see what you’re going through and I needed it to be seen. I felt so traumatised by the strength of the emotions and by the meltdowns and I just couldn’t process that without a physical, identifiable injury to associate it with. Again, I’m not saying that this is a good method of coping but it was all I had at the time. Now, I have other things to try. I haven’t yet found anything that works but what’s important is that I’m trying, even if I don’t want to sometimes. This is a whole other issue that I do want to talk about at some point: to someone who hasn’t ever self harmed, the idea of not wanting to stop doing something that is so bad for you is weird, but is a feeling that is often associated with self harm. That feeling can be very isolating because many people don’t understand it, and many more react badly to begin with. And feeling misunderstood can really exacerbate the feelings that lead a person to self harming. I think that discussing self harm and learning about it can only help with that. There will be people who say that bringing awareness to it will encourage people to self harm and while that may be true to a certain extent, the amount of people it could help would massively outnumber that.
People do ask about the scars. I’ve personally never had an unkind response to them; it’s usually just awkward. Even if someone doesn’t actually bring them up, I see them notice and it can get really uncomfortable because no one knows how to handle it. Claudia mentions being embarrassed about people seeing them and talks about how she has tried in the past to cover them up. Sometimes that’s just easier. It’s so complicated and it’s hard when people don’t get it or jump to conclusions. There’s the typical, “You’re asking for attention,” which has always frustrated me no end. I’m not sure when asking for attention became such a negative thing. Of course, there will always be people who abuse the compassion of others, but I would hope that our first reaction would still always be to try and help. If someone is asking for attention in some way, they probably need it, even if the reason why isn’t immediately apparent. I never tried particularly hard to hide what I was doing because I think that, subconsciously, I wanted someone to draw attention to it and see what I was going through. But at the same time I didn’t feel able to talk about it.
Sometimes people see the scars and assume that you’re ‘showing them off’ when you don’t cover them up, which is weird to me. I’m not sure why you’d want to ‘show off’ or ‘flaunt’ the evidence of a moment where you’d gotten so low that you had to physically take it out on your body. When you think about the lengths people go to to hide their scars – wearing long sleeves in a heat wave, making endless excuses as to why you can’t go swimming, hiding them with make up or bracelets or tattoos, spending every second thinking about your scars and how you’re going to make sure that no one sees them – it’s clearly not a straightforward issue. And as Claudia says, it’s not showing off; it’s a form of body positivity, of learning to be comfortable in your skin, regardless of what that skin looks like. That is a hard thing; it’s something that should be supported, not torn down.
There’s obviously a lot more to talk about when it comes to self harm but this is already a lot longer than I’d originally intended it to be! This is something that makes me really emotional and fired up so I could probably write a book on it. It’s so important to talk about and talk about openly and honestly. I wish I’d found someone writing about it or recording YouTube videos about it when I’d started struggling with all the things I talk about on this blog. Had I, and the people around me, had more knowledge and awareness about all of this stuff, my ‘mental health journey’ would’ve been very different.
Category: autism, depression, emotions, mental health, response, self harm, therapy, treatment, video Tagged: actuallyautistic, actuallydepressed, asd, autism, autism spectrum disorder, autistic, autistic adult, claudia boleyn, cutting, depressed, depression, emotions, feelings, mental health, mental health awareness, mental health blog, mental health blogger, mental health blogging, mental illness, scars, self harm, self harm awareness, self harm scars, self injury, self injury awareness, trigger, trigger warning, tw, youtube, youtube video, youtuber
Posted on February 10, 2018
As I’ve said before, I struggle with how powerful my emotions can be. When I’m happy, I feel like every cell in my body is glowing; when I’m upset, it feels like my chest is collapsing; when I’m angry, I feel like I could destroy buildings, and when I love someone, if I could take on all their pain myself, I would do it in a heartbeat. These feelings can completely overwhelm me, making it impossible to think rationally and I’m often left absolutely exhausted afterwards. Occasions like these are closely linked with my autistic meltdowns but they also do occur separately. Over the last couple of years, I’ve gotten better at managing this so I thought I’d write down some of the ways I do this (of course there are still times when something emotionally difficult just comes out of nowhere but we can’t control everything so we work on the things we can).
Allow myself to feel everything – I think it’s so important to actively feel and process your emotions. Ignoring my emotions does me no good. So I let myself feel them and let them settle and usually then, I can feel what the right thing to do is.
Prepare for events I know will be emotional – When I know an event is going to be stressful or upsetting or emotional, I seriously think about how important it is that I attend. If I don’t need to go and I can see that it is going to negatively affect me, I do consider not going. There’s nothing wrong with protecting your mental and emotional health. If I either need to go or think it’s the right thing to go, I make sure that I’m prepared for it. I make sure I have everything I need, I plan the elements that I can (like travel arrangements) to minimise stress, and I do some of the other things on this list. I also factor in the number of people. Big crowds of people can really stress me out so it is something I consider when deciding whether or not to do something and then how I handle it.
Create a safety net – Again, when I know something (an event or period of time) is going to be stressful, I take certain precautions. I’ll arrange an escape plan ahead of time in case I need it or I’ll arrange to have someone I know with me. Most of the time, I’m fine but that’s usually because I know I’ve made these plans and so I’m not worrying about what will happen if something goes wrong.
Build in time to recover – I am easily exhausted, especially at the moment, so I allocate time before and after an event to make sure that I’m as rested as I can be before it and then to give me recovery time after. I struggle with the reality of this: I get very frustrated about tiring so quickly and wish I could jump from one event to another like many people I know can. But even when I’m raging and swearing about this, I do it because I know objectively that I need it.
Writing or journaling – I’ve written about this before but I’m such a believer in writing down your emotions. For me, it gives me somewhere to put them so I don’t have to carry them around with me. I can leave them where they are and move on. It also makes them more manageable because I’ve put words to them; they’re no longer an intangible mess overwhelming me.
Therapy – Talking about how you feel is invaluable and having someone who is professionally trained, someone outside of it all who can look at what’s happening objectively is even better. I’ve been going to therapy for three years now (three years today in fact!) and having that safe space where I can talk about anything is so important to me. I wouldn’t be where I am now without it. I might not be alive without it.
Specific amounts of medication – Certain medications I have taken have had a little leeway about them and my psychiatrist trusts me to use my judgement with them. For example, when I know I’m going to need as much energy as I can get or have really needed some sleep to recover from something, I have increased my sleeping medication temporarily to make sure that I sleep well. Of course, this is something you only do with the guidance of your healthcare professional.
It does still happen. I do still get completely overwhelmed by how I feel but I am better at managing it. I guess these things just make the experience easier on me and everyone else, and less stressful than they were before. Despite all of this though, the strength of my emotions is something I really value about myself. Everything matters. I care with everything in me. It’s hard but ultimately, I wouldn’t want to be any different. Life is bigger this way.
Category: anxiety, bpd, emotions, mental health, therapy, writing Tagged: actuallyautistic, asd, autism, autism spectrum disorder, autistic, autistic adult, borderline, borderline personality disorder, bpd, emotional, emotions, feelings, health, journaling, medication, rest, therapy, tips, tired, writing
Posted on January 14, 2018
I’ve seen a lot of people make sense of their mental health issues or their Autism or their whatever by saying that it’s given them a superpower: sensitivity to emotions, intense focus, and so on. Despite my love for all things superhero, this has always irritated me and I never really understood why until I talked to my Mum about it. The words just came out and it clicked into place.
For me, it’s too simplistic a concept. At this point in time, I only feel disadvantaged – deprived – by my Autism especially. I’m told I won’t feel like this forever – I know that lots of people feel like it does add something to their lives – but right now, it takes away from my life more than it adds. So it really doesn’t feel like a superpower. If anything, it feels like I’ve suddenly got a superpower that I can’t control. If you want an excellent example of this, watch Agents of Shield: one character develops the ability to control the vibrations around her but because she can’t control it, she essentially causes earthquakes whenever she gets upset or angry or scared. Sometimes I feel kind of like that, like the intensity of my emotions causes irreparable damage to me and everything around me. I’m not causing natural disasters or shattering windows but maybe the effect is just slower.
An example that fits better with Autism might be having enhanced hearing – connected to the sensory sensitivities – but because I can’t control it, I can’t use it. I can’t isolate a single sound and tune out everything else; it’s just a tidal wave of noise, the world with the volume up to maximum. It feels like the best I can do is to manage it, to keep it at a level that doesn’t kill me. I wonder if I’ll ever be able to control it, even a little bit. What if it’s something that you just can’t control, like time or the weather? I worry that it’s one of those things, that it’ll be like this forever. Is it still a superpower if you can’t do anything with it, if you can’t do anything good with it?
I’ve done my fair share of those personality tests that supposedly tell you something about yourself, what animal you’d be or which Hogwarts house you’re most suited to. I think this is something that many people who struggle with identity do: you feel like you don’t know who you are so you’ll take any answers you can get. I’ve definitely fallen into that rabbit hole before. I’ve never found a good one for superpowers though. Mine would probably be something to do with emotions, like being able to manipulate someone’s emotions or transmit my emotions to somebody else. Maybe that’s the problem: maybe the strength of my emotions just falls short of a superpower, maybe one percent more and I’d be able to control them. That fits right into my fear that I’d be something special if I just tried harder, that I’m never trying hard enough. Okay, I’m rambling now.
Anyway. My point is… I’m not even sure what my point is. I guess I’m just thinking out loud. Reading it back it’s a bit of a mess but I needed to put all of this somewhere. Mostly I think I’m scared I’m not enough, not enough of anything. I’d love to know if you’ve thought about any of this, whether you like the superpower metaphor, even what you think your superpower would be… So if you’d like to, please leave a comment below.
(Photo by Richard Sanderson. He called this my ‘superhero pose.’)
Category: about me, anxiety, autism, bpd, identity, mental health Tagged: actuallyautistic, anxiety, anxious, asd, autism, autism awareness, autism spectrum disorder, autistic, autistic adult, emotions, feelings, identity, metaphor, ramblings, super powers, superhero, superheroes, superpower, superpowers, thoughts
Posted on October 14, 2017
Ask anyone about Autism and they’ll most likely describe the stereotype: difficulty socializing, a ‘lack of empathy’, specific and focused interests. But, as with everything, it’s so much more complex than that, especially for girls and women with Autism. While there are various statistics on the ratio of boys to girls, it’s clear that there are many more girls and women with Autism than was originally thought. And because the diagnosis of Autism has always been based on the male presentation of Autism, it can be really difficult for girls and women to get diagnoses and support. I can’t speak to anyone else’s experience but I can speak to mine.
I was a shy kid. I was so shy, and so anxious, that I couldn’t be left at after-school clubs or activities. I was petrified and cried until my Mum would take me home. I was constantly told I was too sensitive, that I took things too personally, that I needed to grow a thicker skin. And that really upset me – but then I was being too sensitive, wasn’t I?
These issues continued through my childhood and into my teenage years. I was always anxious and strived for perfection in everything. I was a vigilant rule follower; I couldn’t, and still can’t, break a rule for anything. I was terrified of turning in homework late, convinced it was an unforgivable act. The one time I did forget a piece of homework (because I’d taken it out of my bag to check I’d packed it and then forgotten it in a panic about being late – another constant anxiety), I cried in a corridor and my hands shook when I told my teacher. It was fine, of course, but it didn’t help my anxiety. I was so scared of doing something wrong, of getting into trouble.
In addition to that, I never felt like I quite fitted in. Anywhere. I felt like I was stuck behind glass, separated from everyone else and unable to break through it. Everything seemed so much easier for everyone else; everything they seemed to do effortlessly took all of my energy, leaving me exhausted. I couldn’t understand why I just couldn’t cope as well as everyone around me. For some unknown reason, I couldn’t function as well as everyone else and that made me feel like I was broken. Despite all of this, no one clocked that there was a problem, not a doctor, not my family, not me.
What had always just been a feeling of not coping started to take over other areas of my life. I’d always done well as school, despite missing more than eighteen months when I struggled with an unidentified illness that caused debilitating fatigue. My lowest grade at GCSE was an A (although I was disappointed with not having achieved more A*s). I got to Sixth Form and everything changed. Suddenly every class, every test was a struggle. Learning and applying knowledge had always been something that had come easily to me, something I’d enjoyed, and all of a sudden, it had become so difficult and that was incredibly distressing. My anxiety got higher and higher and depression started to creep in. I was constantly exhausted and just getting through the day started to feel like an impossible task.
The turning point came when I failed an exam. I locked myself in a toilet stall and scratched at my arms over and over with a broken paper clip, desperate to feel anything other than this howling feeling of failure that came from somewhere deeper than I’d ever experienced. I don’t know how long I sat there and I don’t remember much of that day, but that was when my family and I started to realise that there was something really wrong.
A lot went into getting my diagnosis. I’ve lost count of all the doctors I’ve seen, the amount of times we left without any answers, the amount of books we read. I’ve been diagnosed with multiple mental health problems and tried a lot of different medications. I tried various therapies like CBT and EMDR. Nothing helped. But due to my Mum’s never ending commitment, I ended up at the Brighton and Hove Neurobehavioural Service and after several hours answering questions, I walked out with a diagnosis of Autism Spectrum Disorder. To start with, I was too exhausted by getting to that point to take it all in but slowly, everything started to make sense. All these disconnected pieces of my life and my personality began to click into place.
I’ve always felt emotions strongly. If something goes well, I feel like I’m bulletproof. If something goes badly, I can end up in a meltdown: crying, shaking, screaming, and often self-harming. Either that, or I go into shutdown where I retreat to my room and lie in the dark, unable to think or talk properly. Sometimes a meltdown leads to a shutdown and it can last for days, or even weeks.
I’m extremely sensitive. To a lot of things. A change of plan, loud noises, bright lights, unfamiliar people and places, all of those things increase my anxiety, making it difficult for me to function, to make decisions, to interact with people or the environment around me. Processing that information takes a lot of energy and I’m easily exhausted and overloaded. Too much sensory information, too many demands placed on me, the closer I get to a meltdown. It’s a fragile existence, like walking on a tightrope.
I’ve never had trouble with empathy, with ‘stepping into another’s shoes’. Or more accurately, I’ve never found that difficult to do. My struggles tend to be with the other extreme: I’ve been told I’m too empathetic. I frequently experience other people’s emotions as if they’re mine and with such strength that I feel completely overwhelmed. It’s strange and upsetting to, for example, feel grief for someone I didn’t know. It can feel like I’m intruding even though all I ever want to do is help because I know how strong those emotions can be. It’s incredibly difficult for me to see someone upset and not be able to do anything. It can also be very difficult to do something as simple as walk down the street. I just feel overwhelmed by how big everyone’s lives are, how much makes up a person: memories, favourite colours, foods they hate, things they want to happen, things they don’t want to happen, phone numbers they’ve forgotten, songs stuck in their heads. I could go on forever. And when I’m surrounded by people, I feel all of that pressing in on me. It makes it hard to breathe.
Socialising is difficult. Again, processing all the information around me takes a lot of energy: a person’s words, body language, tone, how other people are reacting, everything going on in the background. It’s hard work. It feels like everyone else has a rulebook that I never received and so I’ve had to learn how to be social. Where everyone else processes all this information automatically, I have to actively process it, which takes a lot of energy. So it’s not hard to imagine why I’m tired out very quickly by social situations. Of course many people don’t notice this and have no idea that I’m autistic. Even the visible signs go unnoticed, like my difficulty with eye contact. Aside from the fact that I have no idea how long you’re supposed to hold eye contact for or which eye you’re supposed to look at it, I also feel very vulnerable when someone is looking into my eyes, like they can tell what I’m thinking and feeling.
I do have my own specific interest: writing, in all forms, but my favourite is songwriting. I’ve read a bit about these focussed interests and apparently the interests in the female presentation of Autism tend to go under the radar because they can be similar to a neurotypical girl’s interests, like animals, TV shows, books, particular singers or music groups. It’s the intensity that’s different. I’ve never simply liked something; once I’m interested in something, nothing else matters. When I’m writing, I lose all sense of time. I recently spent ten hours working on a particular piece and only stopped because I noticed my hands shaking. When I looked up, it was dark and I realised that a whole day had passed and I hadn’t eaten. Writing, and writing songs, is everything to me. It’s the only thing I want to do, the only thing I want to do for the rest of my life. It’s hard though, because there’s a big part of me that feels like my life isn’t worth living if I’m not doing that one thing, if I’m not doing songwriting. The music industry is tough as hell so it’s terrifying to think like that. But that’s the truth.
Of course there are other symptoms and this is just one presentation of Autism. As the specialist that diagnosed me said, we are the experts of our own Autism. But, in my experience, it’s really hard. And it’s made harder when there’s so little understanding around the way Autism affects girls and women. Life post-diagnosis is difficult but at least I know what I’m struggling with. I’m learning what helps and what doesn’t. Not knowing was awful. I felt like I was drowning, like I couldn’t even find the surface. And the years of asking for help and being turned away made it worse. The lack of awareness and understanding about how Autism affects girls and women has real consequences. The time it takes to get a diagnosis and the repeated invalidation causes problems of their own. The people supporting me now think that that was part of the reason I developed Borderline Personality Disorder, a mental health problem that involves instability of mood, behaviour, and self image. And I will never forget one particular doctor’s opinion, that maybe that’s just how life was going to be for me. That remains one of the most upsetting experiences of my life and years later, I’m still struggling to believe that I will ever be happy.
I am so lucky to have found the people who are supporting me now and I feel it because I know that without them, there’s a very real chance that I wouldn’t be here now. But there are so many people without this support. There needs to be more information, more awareness, more understanding of Autism in women. Too often it goes unidentified and the effects of that can be worse than the struggles caused by the Autism itself.
Category: about me, anxiety, autism, depression, diagnosis, mental health, self harm Tagged: actuallyautistic, anxiety, asd, aspergers, aspergers syndrome, autism, autism awareness, autism in girls, autism in women, autism spectrum disorder, autistic, autistic adult, depression, diagnosis, empathy, growing up, meltdown, mental health, mental illness, shutdown, social anxiety, writing
Posted on October 11, 2017
A while back, I found a really good article on The Mighty about Autism and eye contact. As someone with Autism, this is something I really struggle with and something that makes socialising very stressful. People mistake it for rudeness when it’s often a coping strategy, a way to make the situation more manageable. It’s something that seems effortless for everyone else while I feel like I didn’t get the rulebook.
For me, eye contact is a multi-faceted issue.
The simplest part of it is that I simply don’t know which eye to look at. Especially when I’m standing close to someone, I don’t know where I’m supposed to look. That makes me very self-conscious and distracts me from what the other person is saying.
I also feel like I’m really on the spot, that I have to answer immediately if I’m making eye contact. I get very anxious in social situations because I feel like I can’t process quickly enough to keep up with the conversation so looking away gives me time to react and think and then respond.
Then there’s the feeling of it being too confrontational. I find confrontation very, very stressful because of feeling like I can’t process what’s happening fast enough. And that’s without all the emotions associated with such a situation, another thing that makes processing difficult. So anything that feels remotely confrontational is something I shy away from.
The biggest part of it is that it feels so, so personal. When I’m looking into someone’s eyes, I feel like they can see what I’m thinking and feeling and that’s terrifying. I feel so exposed and so vulnerable. It makes me feel panicked and so it just feels safer not to make eye contact.
The act of looking someone in the eye takes up a lot of my energy and concentration. It’s exhausting and overwhelming. I can’t think and so I can’t engage in the conversation. Just because I’m not looking at you, doesn’t mean I’m not paying attention. I am. In fact, I’m more focussed.
Posted on September 9, 2017
A little while ago, I discovered Sophie Mayanne’s Behind The Scars photography project. I was scrolling through Instagram, probably procrastinating, when I saw a photo of a young woman unashamedly showing off her scars. I was intrigued by the story behind that post – while I’ve never been actively told to hide my own scars, it often feels like I’m expected to cover them up. This is particularly true of self harm scars, I think. As I said, I’ve never had someone specifically tell me to hide them but I still feel that there is an expectation that I should, either because I should be ashamed of them or because they might upset people. I protest this and so does Behind The Scars. This ever-growing collection of photos allows people to show their scars and tell the stories behind them. I don’t think I can describe it better than Sophie herself does: “Behind The Scars is a celebration of beauty, of flaws, of battles won and obstacles overcome. It is about survival, living beyond that and capturing the memories. It is a truly honest depiction of how our history, shown through these scars, does not define us but compels us.”
I was instantly a fan and applied to take part. It took a bit of planning and rearranging but come the day of the shoot, I arrived with only a little anxiety. I’ve had photos taken before, for my music projects, but they’ve always been taken by people I already know. So I was a bit nervous about that. I had also been nervous about my difficulty with eye contact (thank you for that, ASD) but Sophie was very reassuring and put that fear to bed very quickly.
The shoot itself was a very positive experience and made much easier by the presence of a little dog, Carla. Animals always put me at ease (to the point where both my cat and my dog frequently accompany me to therapy sessions) so that was a lovely surprise and did make me feel less anxious. Anyway. I had expected to feel very self-conscious but I didn’t. In fact, I felt strangely in control and comfortable in my body and that is something I’m really grateful for, grateful to this project for. And even though I often get very anxious about not knowing how to do something, I didn’t feel that as strongly as I sometimes do: Sophie was great, telling me where to stand and what she wanted me to do. I never felt judged and if a particular pose felt unnatural, we were on to the next one straight away. And suddenly we were done.
The other part of the project involves writing a little bit about your scars or your experience of having scars. I thought a lot about what I wanted to say and eventually, I came up with this:
“I’ve struggled with self harm on and off for about eight years but it’s gotten worse as my mental health has worsened. The compulsion, for me, is two fold. Because of my Autism, I feel emotions really strongly and when it gets completely overwhelming, the only thing that helps is self harming, like all the emotions can escape. It’s like my version of a pressure valve. I also do it when something very upsetting happens, like I’m trying to represent that distress in a tangible way and show that it’s changed me. I think a lot of people don’t understand it and almost don’t want to because it’s a hard thing to think about but I think the only way to help someone who is self harming is to try and understand it. I didn’t talk about it for a long time because I didn’t have the words but then I realised how much it would’ve meant to my younger self to know that other people were struggling with the same things. So it’s time to find the words.”
My lasting impression of Behind the Scars, and of Sophie, is sincerity, and personally, I can’t give it higher praise than that. It’s been a couple of weeks now since the shoot and I love the photos. They look like me. I know that sounds odd, but how many photos have you seen of yourself that just don’t look like you? But these do. These photos look like me.
“If these images help us to think differently about scarring, and for those that “wear” these scars, to look differently at not only the imperfections, but the individuality these marks might engender, then for me, I would deem the project a success.” – Sophie Mayanne
A massive thank you to Sophie for taking these photos and for the Behind the Scars project as a whole. You can see more of the photos from the project here and here and, if you’d like to help her get Behind the Scars to New York, you can find the Kickstarter here.
Category: about me, autism, event, mental health, self harm Tagged: anxiety, asd, autism, autism spectrum disorder, behind the scars, depression, event, mental health, mental illness, photography, photography project, photoshoot, scar, scars, self harm, self harm awareness, self harm scars, sophie mayanne
Hey! I’m Lauren Alex Hooper. Welcome to my little blog! I write about living with Autism Spectrum Disorder, as well as a number of other mental health issues. I’m also a singer-songwriter so I’ll probably write a bit about that too.