Posted on March 29, 2018
I was diagnosed with Autism Spectrum Disorder at the age of twenty, after actively struggling for several years. When I use the word ‘actively,’ I mean that, while I had had difficulties with all the things that turned out to be characteristics of Autism, they had become really hard to deal with and were having a serious impact on my life and my mental health. For example, I’d always found socialising confusing and stressful but I’d managed it for most of my life, thinking that that was just how I was built. Ultimately, that’s true but knowing where it comes from has been very helpful, both in validating that struggle but also in helping me to learn how to cope with those feelings. So, the diagnosis was a really big deal but I still think a lot about why it came so late and what that means.
In my opinion, there was one big reason why it took so long to get a diagnosis and that was the lack of awareness and understanding around both mental health and Autism, especially in women. Because Autism in women often presents very differently to the stereotypical male presentation, no one even mentioned it until we’d been looking for an explanation for more than eighteen months. I have a couple of blog posts about the process of getting my diagnoses coming up but the short version is that we started out by looking at my mental health. We went to various people but no one took my anxiety, my depression, and so on as serious problems, brushing them off as things that everyone deals with. So it took a lot of work to get even one person to recognise that what was happening was an actual problem, and then even more work to get them to see that that was part of a bigger pattern. And I know that all of that was down to this general lack of awareness about how Autism can manifest and again, how it can manifest in women.
I am very grateful to have my diagnosis, regardless of how long it took to get it but I do think that getting it so late has had a detrimental effect on me:
I’ve often had friends and family ask what they can do to help me and to be completely honest, I don’t know. I’m still trying to figure all of this out for myself: what’s affected, what helps, what doesn’t… Sometimes it feels like, just because it’s my diagnosis, people think I have this deep understanding of it. I’m definitely more clued in than I used to be but even two and a half years later, I don’t always know what to do when something comes up. I think the only thing I can say is this: “Learn with me.” This is a process, which involves a lot of trial and error and over-planning and screwing up. When it doesn’t work, it’s no one’s fault. We just learn and move on to the next thing. But hopefully, we can navigate it as a team rather than a group of individuals.
I try not to spend too much time thinking about how my life would’ve been different if I’d been diagnosed at a younger age because there’s little to be gained from it. It is how it is. But occasionally the thought creeps in and I imagine this life where I’m so much more productive and engaged and independent. I don’t know if that’s how it would’ve played out but it’s a seductive thought. But as I said, I try not to go down that rabbit hole. I think it comes down to this: there are people I wouldn’t have met and experiences that I wouldn’t have had if I’d been diagnosed as a child and ultimately, I wouldn’t give those up for anything.
Category: about me, autism, bpd, diagnosis, tips Tagged: actuallyautistic, actuallyborderline, actuallybpd, autism, autism awareness, autism awareness week, autism diagnosis, autism in girls, autism in women, autism resources, autism spectrum disorder, autistic, autistic adult, autistic spectrum disorder, borderline personality disorder, bpd, diagnosed as an adult, diagnosis, late diagnosis, mental health, mental health awareness, mental illness, waaw, waaw 2018, world autism awareness week, world autism awareness week 2018
Posted on February 28, 2018
A few weeks ago, I went up to London to go to a concert with one of my friends. On the train, I’d started writing a new blog post (about getting a diagnosis – expect it soon!) and when I moved from the train to the bus, I kept going. Twenty minutes into my journey, a boy sat down next to me. I’m terrible at guessing ages but I think he was around twelve. I was in my own little world, typing furiously, when he asked me how long it had taken me to write “all those words.” It took me a moment to shift gears. I thought about it and said that I’d been writing for about an hour and a half. He looked half-amazed and half-appalled, which made me laugh. I told him that I like writing so it was fun for me. We talked for a few minutes before he asked me why I would want to put everything I’d written on the internet for people to see, which surprised me: I hadn’t thought he’d been reading over my shoulder.
I’ve been thinking a lot about that question. There are a lot of ways of answering it and I’ve been turning them over, trying to figure out which one is the best, which one represents my feelings in the truest sense. But maybe I need all of them to explain it: because I have this need to be honest, because I like to write, because I want to do something that matters, because I want to help people, because I’ll explode if I keep all of this inside me, because I want to be a part of changing how people see mental health, because I don’t want it to always be this hard… If I put something out into the world, maybe something will change. If I do nothing, I change nothing.
I’ve known some people who are very against giving people their hard earned secrets and while I agree with that in some areas (as much as I complained, doing the hard work in school subjects like Maths because the teacher withheld the shortcuts did mean I learnt more and retained it longer), I categorically don’t when it comes to mental health. If something I’ve learned can help someone else get a diagnosis or support with even slightly less struggle, then I will absolutely share it. Of course I resent how long it took and how painful it was to get to this point but that doesn’t mean I want someone else to go through the same thing. Imagine how quickly things would change if each person in the chain had it slightly easier than the person before. Feeling helpless is something I really struggle with and if there’s something I can do – anything I can do – to help, then I’ll do it. The damage that’s caused by the stigma and lack of understanding around mental health is irrefutable, in whatever form it takes. Not all suffering is equal but some people still seem to struggle with that, as if you have to go through certain things, certain examples of stigma or whatever, to be allowed to struggle. That’s just ridiculous to me. It’s like the “It’s just attention seeking,” response: if someone is asking for attention, maybe it’s because they need it. But that’s a rant for another day.
Getting back to the point… I have been so inspired by the positive, helpful things that I’ve seen people put out into the world and that’s what I want to do. That’s who I want to be.
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 August 16, 2017
I posted about this on Instagram but I wanted to write something for here too.
On 5th August, it was the two-year anniversary of my Autism diagnosis and I decided that I wanted to celebrate it. It was already a really busy day with Brighton Pride and the birthday of one of my best friends but when I got home, I had cake with my family. Me and my Mum made a chocolate cake together and stuck a little sign on top that said ‘Happy Diagnosis Day!’
I’m not sure whether I’ll ever be able to celebrate actually being autistic – there are still so many things that I’m struggling with – but I did like celebrating this day because getting the diagnosis was a really big deal. I finally got some answers to the questions I’d been asking my entire life. For years, I’d struggled with this unknown thing, not understanding why I couldn’t seem to function as well as everyone else. It felt like I was broken. And getting the ASD diagnosis changed that. It explained things I hadn’t been able to understand and it gave me a place to start when looking for support. Suddenly this massive, intangible thing I was wrestling with started to make sense.
It’s not perfect and it’s not easy but this date represents an end to that chapter of my life and the beginning of a new one, hopefully a better one. And I think that’s worth celebrating.
Posted on August 12, 2017
This post has been hard to write. I’ve been writing various pieces to post for several months now but this is the one I keep avoiding. As much as I love writing, writing about myself – introducing myself with only a select number of words – is something I’ve always found difficult. Usually I find that words open everything up and make the world bigger but sometimes I think people are the exception to that. How do you fit something as big and intangible as a human being into something as small as a series of words? It’s kind of like when you take a photo of someone and even though it is them, it doesn’t look like them. But this is something I’ve wanted to do for a long time, so I’m going to try.
My name is Lauren Alex Hooper and I’m twenty-two years old. I’ve just finished my songwriting degree in London and am working towards my first release as a singersongwriter. Songwriting is my favourite thing in the world and the only time I feel truly calm is when I’ve finished a song. That’s one half of my life. The other half of my life is my struggle with my mental health. Of course, this does often overwhelm the other half. It often overwhelms everything. At this point in time, I have been diagnosed with Depression, Anxiety, Social Anxiety, Obsessive Compulsive Disorder, Borderline Personality Disorder, and Autism Spectrum Disorder. These are still fairly recent (two years in the case of the ASD) but I’ve been living with the symptoms of them for a very long time. I’ve tried a lot of things to help with said symptoms. Some have helped, some haven’t. Currently I’m taking medication for the anxiety and going to Dialectical Behaviour Therapy, the best combination I’ve found so far. I hope to talk about all of this in more detail in future posts. If I start to write about it all now, we’ll be at ten thousand words in no time and while I don’t know much about blogging, I’m pretty sure that that’s not the way to start…
I’ve been writing about my experiences with mental illness for a long time but it’s only ever been for me. It’s only ever been a method of coping. But I can’t help thinking about how much it would’ve helped me to know other people felt the same way, had had similar experiences. For such a long time, I couldn’t understand why everyone functioned so much better than me, why I seemed to struggle so much more than everyone else and it wasn’t until I was sixteen that I heard someone talk about experiences that matched mine (it was Stephen Fry – but that’s another story). And that changed everything. I finally felt able to talk to my Mum because I had some context for what I was feeling and ever since that moment, we’ve been looking for answers and support. So I started to think about putting some of this writing (and there’s quite a bit of it) out into the world. Maybe it will help you, maybe it will help me. Here begins a new adventure.
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.
My first single, ‘Invisible,’ is now available on iTunes and Spotify, with all proceeds going to Young Minds.