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 March 27, 2018
During my attempts to get a diagnosis, I had many people giving me their thoughts on finding a label and that only increased when we started pursuing an Autism diagnosis. It was almost as bad as the amount of people telling me to have a bath or go for a walk to help my depression. Everyone had an opinion on it and the majority of people were, at best, wary and, at worst, completely against it. But I knew I needed a diagnosis – an explanation – for why I was struggling and now, two and half years after my diagnosis, it’s clear that it was the right move for me. I’m not holding it against those people because they were only trying to look out for me but it did add to the stress of the situation so I thought I’d write out some of the positives and negatives that I’ve experienced around my diagnosis.
AN UNDERSTANDING OF WHY I WAS STRUGGLING – Before my diagnosis, I was very aware that something was causing me to struggle and I needed to know where that was coming from. I could see that I functioned differently and, until I had an explanation, that was because I was broken. That was how it felt. If a doctor told me it was something – something that had been researched, had a name, something that other people had – then it was something that I could do something about. But if it went unnamed and uncategorised, it was because there was something wrong with me. So, to learn it was Autism, was actually quite a relief. Rather than being an intangible black cloud that was swallowing my life, it had boundaries and patterns and strategies to work with. That was massively helpful to me.
A VALIDATION OF MY STRUGGLING – Before my diagnosis, I was consistently dismissed by doctors and other medical professionals when I tried to get help. If I mentioned anxiety, I was told that, ‘everyone gets anxious.’ If I felt that I absolutely couldn’t do something because something in my body was screaming not to, I just had to pull myself together. If I talked about my debilitating fatigue, I essentially got a shrug of the shoulders. Now at least people listen. They don’t always have the answers I want – sometimes they don’t have answers at all – but I’m no longer being dismissed.
MAKING SENSE OF WHO I AM – The things I had been struggling with were taking over my life and, without knowing what caused it, that made me feel very lost. I struggle with identity stuff anyway but when all my thought and energy was being devoted to these problems, there wasn’t the space for anything else. With the Autism diagnosis, things became much more straightforward. Of course this may be different for other people but for me, I could put the Autism in a box in my brain and that allowed me to see what was there. I started to get more of a sense of who I was and who I wasn’t. There are differing opinions of whether you should define yourself by your Autism but it’s a massive part of my identity; looking back, I’m surprised I didn’t feel more lost.
ACCESS TO SUPPORT – Having an Autism diagnosis made it possible to get support, emotionally and financially. I’ve been able to get benefits, extra time on exams, flexibility in the arrangement of events, and so on. This has been so helpful and I’m so grateful for it. Of course I managed before but these things have made a great impact on my stress levels and have therefore made it possible for me to be more functional and more productive. And I’ve been able to enjoy myself where, before, I would’ve been paralysed by anxiety. None of that would’ve been possible without a diagnosis.
AN EXPLANATION FOR UNUSUAL BEHAVIOUR – Having ‘Autism’ as an explanation when people ask why I’m doing something a particular way or why I can’t eat a certain thing makes people a lot more accepting. While many people don’t understand Autism in detail, they do know that it can involve behaviours like these. For example, my family are much more patient with my food sensitivities than they were before the diagnosis because now they know where it comes from; they understood that I wasn’t being picky by choice, but because I was autistic. The focus has changed from putting myself through those tough experiences in the hope they’ll get easier to finding ways to help me manage them.
A CONNECTION TO OTHER PEOPLE WHO EXPERIENCE THE WORLD IN A SIMLIAR WAY TO ME – This is something I’ve only started exploring recently. For a long time, I needed to figure out how to be autistic, if that makes sense. I had to work out how to live with it, and adding more people into the equation was a bit too much to cope with. But now that I feel more together (at least in terms of the Autism), I’ve joined a group so that I can meet more people like me, i.e. similar age, gender, and diagnosis. This isn’t something that would’ve been possible without the diagnosis. And even though it’s so new, it has been really exciting. I’ve made some new friends and we’re having a lot of ‘oh my god, me too!’ moments which is surreal and wonderful and funny. Hopefully this is only the beginning of something.
BENEFITS TO MY MENTAL HEALTH – I cannot express how important it was to me to have my feelings and struggles validated, as they were when I finally got the diagnosis. Being believed was life changing. One of the theories as to why I developed Borderline Personality Disorder involves the continued invalidation I went through while trying to get answers for myself. I also had a lot of anxiety around the continued not knowing and I was severely depressed. Getting a diagnosis didn’t magically make things better but it was a huge weight off my mind. And it was movement; even if moving forward is scary, staying still is worse.
FEELING THAT THIS IS FOREVER – Pre diagnosis, there were many theories as to why I felt the way I did. But while I’d repeatedly flipped through those in my mind, I’d never really thought about what would happen after I got my answers. So while getting the Autism diagnosis was a huge relief and a generally positive milestone, I was still very thrown by all these other things that I hadn’t considered, and one of them was that Autism is a lifelong thing that I will have to deal with. When we thought it was depression for example, there was an end to it, the opportunity to recover. I know intellectually that although I won’t ‘recover’ from Autism and I will learn how to manage the difficulties, it did and still can make me feel very claustrophobic within my own mind. As irrational as it sounds, I’ve had moments where I’ve felt like, if I just tried harder, I would be able to break out of this ‘Autism prison.’ I swing back and forth on this feeling but, as you can probably tell, the positives of getting the diagnosis far outweighed the negatives for me.
I want to be clear that these positives and negatives are just from my experience. I know that many people have experienced stigma and have been badly treated because of their Autism but I don’t think I’m qualified to speak to those experiences. I don’t know what that feels like and I don’t want to speak for those people. So this is my experience. Hopefully it can be helpful.
Category: about me, autism, bpd, diagnosis, identity, mental health, treatment Tagged: actuallyautistic, 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, mental health, mental illness, negatives, positives, pros and cons, waaw, waaw 2018, world autism awareness week, world autism awareness week 2018
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 December 5, 2017
Over the years, I’ve had periods of feeling really far away. It often overlaps with my bouts of depression but sometimes it creeps in out of nowhere and I feel completely lost, untethered from everything around me. It fades in and out like a fog, sometimes with no warning and often there’s nothing I can do to dissipate it or avoid it. It can be really scary, especially when it first started to happen, but at the same time, it’s like I can’t really feel that fear or any of my emotions. I’ve described it in different ways but they all describe the same feeling: feeling completely disconnected from myself. But I thought I’d include a few of those descriptions because they give more of a sense of how it feels:
To be completely honest, I’m not sure what causes it, given the overlap of the different mental health problems I struggle with. This is something I have a lot of anxiety about, not being able to pinpoint where individual problems come from. Everything’s connected to everything else. Everything influences everything. But from my own reading, it seems to be common in depression and in Borderline Personality Disorder. It’s often a coping mechanism for stress or overwhelming emotions. The Mind website has a great page about this. My experiences line up best with the description of ‘Depersonalisation’.
I still haven’t found anything that does much to help it but there are a few things that give me a few seconds of relief, of connection. Usually, it’s about tapping into my senses. That seems to bring me back to the world a little bit. So things like opening windows, sitting in the sun, touching leaves or flowers, stroking a pet, having a cold shower or holding something cold… they don’t fix it but they do have a positive effect. Even if it’s tiny, they do create small positive spikes in my mood. They’re like stars in a suffocatingly dark sky. With this, it’s more about getting through it than trying to fix it. It’s about creating one moment after another to carry you through to the other side.
I want to add that I’ve also used self harm to ‘wake myself up’ from this. I’m not advocating it; it’s dangerous and damaging and really difficult to get free of. But if nothing else, I’m honest and it has helped. When I’m in a really bad place, I don’t want to hear that I shouldn’t do it because it feels like the only thing that helps but when it’s not quite so bad, I try really hard to find other ways to cope. I try the things I’ve listed or I try to distract myself. I don’t want to get too far from the point of the post so I’ll come back to this in another post but I felt like I had to include it here.
Friends and family have asked me what they can do to help and if I’m honest, I don’t really know. It can be hard to think about that when I’m just trying to get through it. But I do want to help them help me. At some point, I will write more about this, but I do find it really helpful when the people around me let me set the pace and decide what I can and can’t manage. Sometimes a push is helpful but in this situation, it isn’t. A sense of control grounds me a little bit. Plus, there are some things that are just really hard to manage when you feel like you can’t connect to your emotions. For example, I find it really hard to write songs and be creative when I feel so disconnected from everything. So being able to (and feeling safe to) adapt my activities does help. And talking. Talking it through, figuring out solutions, letting off steam. That really helps.
Category: bpd, depression, mental health, self harm, tips, Uncategorized Tagged: advice, borderline, borderline personality disorder, bpd, depersonalisation, depression, dissociation, emotions, feelings, mental health, mental health awareness, mental illness, self harm, self injury, senses, sensory, sensory information, tips
Posted on November 11, 2017
Feeling abandoned is a big thing when it comes to Borderline Personality Disorder. And events as everyday as someone not immediately responding to a text can trigger that feeling. The smallest slight can be incredibly upsetting and anything bigger can feel devastating. It’s never ending and exhausting. And with the fear of being abandoned hanging over you, relationships (of any kind) can be very stressful. They can feel like a waiting game, wondering how long it will take for the other person to give up on you.
As someone with BPD, I feel emotions very strongly and when something upsetting happens, it feels like I’ve been hit by a massive wave and it’s all I can do to find my way back to the surface. The emotion overwhelms me and there’s no room for logical reasoning. It doesn’t matter what else is going on; all my energy is taken up trying to process all of that feeling. It can take weeks to recover and I feel more fragile each time.
And what makes it more difficult is the fact that it’s not completely irrational; there is ‘evidence’ to support the fear. People have abandoned me in the past, both voluntarily and involuntarily, so whenever I try and talk myself out of the panic, my BPD lays out all these examples, ‘proving’ to me that I will always be abandoned. It’s an exhausting cycle.
I’m not going to go through my history of feeling abandoned, example-by-example, but there is one experience that I want to share. I think it’s too important to leave out. A few years ago, someone really important to me cut ties when I was in the lowest place I’d ever been (something they were aware of). I felt completely abandoned and it had a massive impact on my mental health and view of the world. I was so hurt and so confused and for a long time, those emotions overwhelmed everything. I felt broken. But slowly, that weight lifted. It took two years but I’m finally free of it. And that’s amazing. But it’s not the end of it. That experience has affected me, especially when it comes to my relationships and my anxiety around them. And like I said, it’s hard to talk myself out of that fear when I feel like I’m about to go through all that again.
I’ve wanted to write about this for a while but I wasn’t sure how to frame it, if that makes any sense. But a conversation with one of my best friends brought all of this to the surface.
So let me tell you a story:
One of my best friends had just come back from a trip to the US and was desperate to go back. I was in a pretty fragile place already (dealing with another situation where I felt like I was being abandoned) and watching her plan her next trip abroad felt a lot like she was abandoning me. I didn’t want to say anything and I felt guilty for feeling the way I did: she was building her career and she was so excited and here I was, wanting her to stay. But in the end, I had to say something. We’ve always talked everything through so, even though I was terrified of sounding needy and pathetic, I reached out and told her how I was feeling. She knows a lot about my mental health difficulties so I told her how I struggle with feeling abandoned and that I might need some extra reassurance around her upcoming trip.
(I want to add that although it might sound easy, it wasn’t. Part of me – a big part of me – was convinced that expressing these feelings would be the ‘final straw’ and that she would abandon me on the spot, that I had finally become too much to deal with. This is something that I think is often misunderstood about BPD. This reaction is not because of the other person; it’s because of the BPD. The other person could be the most reliable person in the world. It doesn’t matter. It’s the BPD telling you that everyone will leave, that you’re not enough to make the other person stick around. So defying that and telling my friend how I felt was very, very scary.)
And this is the important bit: how my friend reacted. Instead of telling me I was being ridiculous or brushing off my request, she responded compassionately. She told me not to feel pathetic or guilty, that she understood why I was feeling the way I was. She asked me how she could help, and said that she would do whatever she could to make it easier for me. She said, “I am not going to leave you.”
It was such a relief that I burst into tears. It meant (and still does mean) so much to me. She validated my feelings, asked me what she could do, and gave me the reassurance I needed. I wish everyone responded this way. Perhaps ironically for a condition with such close links to invalidation, these feelings often get written off as being oversensitive or overdramatic. And in my experience, that only makes it worse. Things are better now that the important people in my life understand where these feelings come from; before the diagnosis, the only explanation was that I was very sensitive and therefore needed to ‘toughen up’. It was a fault. And that’s what I thought too. But now that we understand it, we know how to handle it, how to approach it.
I will likely need to hear this again and again to combat my fear of being abandoned but that doesn’t minimise the importance of this moment. As I’ve said, change is a series of moments like these, moments I hold very close, like charms on a charm bracelet.
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.