Posted on March 28, 2020
When it comes to TV shows, movies, and books, I see myself fairly regularly in the physical sense: I’m a young white woman. But when it comes to the things that I most associate with myself – being Autistic and struggling with my mental health – there is very little. Depictions of neurodiversity and mental illness are usually very stereotypical and often downright wrong. And that only adds to the stigma around mental health.
Now, I’m a twenty five year old woman with ASD and several mental health problems (including anxiety, depression, and BPD). I recognise that my experience is very specific. I’m not asking for a fictional version of myself; I just want some characters that I can really relate to. That isn’t an unreasonable request, is it? Seeing yourself in the world around you is so important, at least it is in my experience. It validates my emotions, my experiences, and makes me feel less alone when those things often make me feel very isolated and, if I’m completely honest, broken.
I’ll give you an example:
In Season 2 of Supergirl, the character Alex Danvers comes out as gay and a major part of the season is dedicated to her coming to terms with that and her relationship with another character, Maggie. This storyline meant a lot to a lot of people but the thing that I really connected to was Alex’s emotional journey and her relationship with being happy. In episode 9, her sister is abducted (said sister is Supergirl so she gets into trouble a lot but that’s beside the point) and her reaction is: “I was happy for five minutes,” revealing a belief that she doesn’t deserve to be happy, that somehow she is being punished for trying to be happy. This is brought up again later when she says, “I feel like the universe is just magically smacking me down from being happy.” These two moments were huge to me. This is something that I really, really struggle with and I have never seen it anywhere but inside my head. So to hear it from a character I admired meant everything to me. It made me feel less alone and less ridiculous for feeling this way. Because if this woman (who is more or less a superhero) feels like that, then it’s not unreasonable for me to feel that way, is it? Of course, I’d love for it to be revisited because it’s not something that goes away overnight but the fact that it was mentioned at all kept me going for days – weeks – and even a couple of years later, I can watch that episode and feel better.
And recently, Chyler Leigh – who plays Alex Danvers – has revealed that she lives with Bipolar Disorder. She first started experiencing symptoms at twelve years old and struggled through her teens and most of her twenties: “The mania would come and go, but the depression felt like it was always there. There are a lot of different ways mania manifests: I had extreme irritability and felt like an engine running on overtime; I couldn’t sleep at all; and I felt disconnected from reality, almost like I was high. As a teen, I did a lot of drugs, and that made me feel better, but crashing was devastating.” She tried to be the one in control of everything when she felt so out of control. She was diagnosed in her late twenties* but before her diagnosis, she says she felt like she was drowning and saw multiple medical professionals and multiple medications that just made her feel nothing: “[They] made me feel nothing, and that to me was more important than feeling happy or feeling sad. I withdrew and I shut down… I just didn’t know how else to function. And so I lied about a lot, I hid a lot. I kept to myself. And that caused an incredible amount of chaos and just destruction in the family.” Eventually she hit an awful breaking point, a mania so high that she couldn’t sleep at all and ended up hospitalised. Once she was released, she talks about how she needed to start fresh and find what worked for her. It was “very, very difficult” but now she’s in a good place: “I did find a medication that works that I still take, which keeps me very level, much more even. There are not really big peaks and valleys. It makes me function as a human being where I feel like, ‘Okay, I can manage when things are really hard and I can also really celebrate victories.'”
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Like many of you, I’ve struggled. I’ve also kept quiet about it. I felt like my story didn’t deserve to be shared. But I’m ready to speak up about living with bipolar disorder – for myself, for my family, and for the millions of people who are experiencing something similar. I’m also very excited to announce that I am partnering with @bevocal.speakup, an initiative that encourages people to speak up for #mentalhealth – for themselves and their communities. Partnering with Be Vocal is my way of saying my voice matters. YOUR voice matters. Let’s do this together. Visit @bevocal.speakup to learn more about my story. #MentalHealthMatters #BeVocalSpeakUp #sponsored
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Ten years later, she’s ready to talk about it and use her platform to support others and raise awareness: “It’s something that’s terrified me for a long time because it feels like I’m admitting some sort of secret, or some sort of way that people are going to look at me differently or judge me but I’ve been met with nothing but acceptance and love and support, which is just amazing.” Her story is complicated but unfortunately very common and she and her husband are raising three children who either have mental health problems or are neurodiverse. The link to the initial interview (I believe) is here in case you want to read more about it. She also talks about talking about mental health and mental illness with her children in a healthy way that isn’t scary and that’s really incredible. She’s now teamed up with the Be Vocal: Speak Up for Mental Health movement to advocate for mental health awareness and acceptance: “We have an incredible opportunity to change the narrative and change the conversation, and lead people to places that can encourage them and really take them where they need to go… It’s OK to not be OK. And it’s incredibly important to reach out. Be willing to let your guard down a little bit to be able to find that community. And also know that if you’re really struggling that there are so many resources.”
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#ValentinesDay gives a chance to reflect on and honor our relationships, romantic or otherwise. I want to use today to specifically talk about how my #mentalhealth has connected to my relationship with my husband and family. Through it all – the highs, the lows, the inbetweens – my husband has been my rock. In my lowest of lows, he and my children have been incredibly open and supportive, lifting me up and encouraging me when I needed it the most. That is what got me through. For those who are going through it: surround yourself with people you can trust and reach out to them. Talk about it. If you don't feel you have people you can open up to, there are many organizations who want to hear from you and help you. You can go to @bevocal.speakup for more information on how to reach out and speak up. #BeVocalSpeakUp #MentalHealthMatters #Sponsored
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*”When I first got the bipolar diagnosis it was sort of like, ‘Oh my gosh, if that was me, how on earth am I going to deal with this? Am I in the same place? Am I equipped? Do I have what it takes to actually really genuinely take care of myself?'” I find this quote really helpful because that’s how I feel everyday. I wonder EVERYDAY if I’m ever going to be equipped to look after myself.
And here’s another example:
One of my favourite fictional characters is Daisy Johnson from Agents of Shield (which will be ending soon, something I am genuinely devastated over – it’s going to take actual therapy time to adjust to such a meaningful change in my life). Again, she’s practically a superhero (there’s a theme, I know) and ever since I started watching the show, I’ve been very inspired by her and her storyline. She’s a force of nature. She’s experienced great tragedy and each time, she uses it to reinvent herself, searching for ways to do good and make positive change in the world. She might be a fictional character but she means so much to me. And that led me to following the actress that plays her, Chloe Bennet, on social media. A few months after I started watching the show, she did an interview where she talked very honestly about her mental health: “I suffer from anxiety, I’ve had depression… it’s hard.” She talked about having panic attacks. She talked about the importance of mental health. And she talked about having therapy: “I see a therapist on a regular basis and that has helped me so much.” Reading all of that meant a lot to me. Knowing that someone I admire has had a similar experience makes me feel less alone in that experience.
Bello Magazine (November 2016)
It goes without saying that I wish none of us had to deal with these challenges but hearing people talk about these experiences really helps me. It makes all of this less lonely, less isolating. And seeing strong, smart, insightful, compassionate people (real or fictional) deal with the same things I do, reminds me that I can be those things too, that my mental health problems don’t make me less of a person with less of a future. Seeing people succeeding in what they do, while living with these challenges makes me believe that that’s possible for me as well. Representation is a powerful thing.
Category: anxiety, autism, depression, diagnosis, identity, medication, mental health, quotes, therapy, treatment Tagged: agents of shield, alex danvers, anxiety, bello magazine, bipolar, bipolar disorder, chloe bennet, chyler leigh, daisy johnson, depression, diagnosis, interview, mental health, mental health in the media, mental illness, neurodiversity, panic attack, representation, supergirl, therapy
Posted on December 15, 2019
If you guys follow me on social media, you’ll know that this week, I posted about going back to therapy and being rediagnosed with OCD…
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I’m back at therapy! And this is one of my therapist’s dogs who thinks she’s small enough to sit in my lap. Anyway. I never deliberately stopped going but our schedules have been very difficult to align for a while, particularly with me starting my Masters, and so it’s been a good several months since I’ve had a session. I almost feel like I’ve forgotten how to do it, do therapy. But I’m back and hopefully it will help with my anxiety, which has been severe for a while now. And on that note, I’ve been rediagnosed with OCD! I’m gonna write more about this in a blog post soon but this is really good for me. I have a plan of action. It’s gonna be a long road and I am anxious about it but I feel better knowing what the treatment options are, some of which I’m already doing. So despite feeling very unwell, it’s been a positive week. It’s progress.
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So, that basically explains what’s been going on with therapy (I’ll update you on all of that as I continue with therapy) but I wanted to talk a bit more about the OCD diagnosis because that’s kind of a big deal.
Back in 2016, I was diagnosed with depression, anxiety, social anxiety, OCD, and BPD. And then I was diagnosed with ASD. But in the last year, my psychiatrist reorganised my diagnoses and decided that the symptoms he’d originally seen as OCD fell under some of the other diagnoses, particularly the ASD. But recently, it’s become very clear that it really is OCD.
If you remember this post, I talked about having a massive meltdown, which triggered daily, multiple meltdowns. It was awful and one of the most difficult periods of my life, mental health wise and otherwise: dealing with that and trying to manage the beginning of a Masters. It was pretty hellish. I’m not sure when it stopped but it slowly faded and I’m now only having a meltdown every couple of weeks or so – still a bit more than usual but much more manageable.
But that really triggered something in my obsessive diary writing. My diary writing has been pretty compulsive for years: I NEED to write everything down. It’s like, if I don’t record everything that happens to me, I’ll forget who I am. It’s a constant battle, but it suddenly went from manageable to completely overwhelming. It takes up all my time or it would if I didn’t have all this research to do for my Masters. So these two things are constantly pushing up against each other, which causes me a lot of anxiety. But the diary writing usually wins, which only causes me more anxiety, anxiety that I’m going to do badly in my Masters. And even though I know all of this, I still can’t stop writing. And because there’s more life than there is time to write, I’m just getting more and more behind. More anxiety. So I’m just a big ball of anxiety. It’s like a snowball rolling down a hill, getting bigger and bigger and going faster and faster.
It took forever to get an appointment with my psychiatrist (so the anxiety has gone on a lot longer than was necessary or fair, in my opinion), but eventually I got an appointment. And of course, the time was then changed last minute, the sudden change of plan sent me spiralling into a meltdown. So it took a long time but I finally saw him and we talked about all of this in great detail and he decided to re-diagnose me with OCD. I’m so relieved because now it has edges; it’s not some vague, amorphous cloud of stress hanging over me. A diagnosis gives me something to work with.
We talked about the treatment options, medication and therapy. Medication wise, I’m already taking the things he would recommend so that’s that avenue covered. I don’t know much about the therapy route yet. As far as I know, I’ll have to reduce the writing bit by bit, which – in itself – is going to create more anxiety. Hurray. Not. It’s the whole ‘it’s gotta get worse before it gets better.’ But now I’m back in therapy and I have an amazing therapist so although I’m terrified of even more anxiety, I know I’ll have thoughtful, compassionate guidance. I don’t know when we’ll start because, as my psychiatrist pointed out, right before a set of assessments isn’t necessarily the most productive or helpful time to do this sort of stuff. But even though I’m scared, I need to start working on this soon or every semester is going to be like this one: a daily battle of OCD versus real life. And I really, really don’t want that.
Category: animals, diagnosis, medication, meltdowns, mental health, ocd, therapy, treatment, university, writing Tagged: anxiety, asd, autism, autism spectrum disorder, dbt, diagnosis, dialectical behaviour therapy, masters, masters degree, masters degree in songwriting, medication, meltdown, meltdowns, obsessive compulsive disorder, ocd, psychiatrist, therapist, therapy, treatment
Posted on December 8, 2018
The other day, I was just browsing through YouTube (probably procrastinating something) when I came across this video.
“Autism is not a disease, it is a developmental disability. It’s about living our best possible lives with this condition.”
I am ridiculously excited that this video exists. Even a few years ago, when I was looking into Autism as an explanation for my struggles, I was still being told that women don’t have Autism or being dismissed because I didn’t fit into the stereotype for Autism (which has come from autistic boys and men). So the fact that this video even exists shows that some progress has been made. At this moment in time, it has just short of a million views. A million! That means that potentially a million people now have a better understanding of Autism in women. That’s completely amazing!
There’s so much good stuff in this video – you really should watch the whole thing. But here are some of main points and some quotes that stuck out to me:
1. Autism covers a wide spectrum.
2. We have emotions.
3. Social interactions can be challenging.
4. Diagnoses can happen at any age.
5. The nuances of dating can be challenging… but we do have sex lives.
6. We have lots of different interests.
7. Bullying sucks.
8. It’s getting better.
As I said, it’s amazing that this video exists and that autistic women are being seen and that people are finally understanding that autism in women looks different than it does in men, and that it can look different from woman to woman. I agree with all of these points but there’s still so much to it, to living with this everyday. So, in addition to these points, this is what I, as an autistic woman, want you to know:
Posted on August 19, 2018
This is something I’ve been meaning to write about for a while but it’s such a big topic that I was very daunted by just how much I needed to include. I’d open a word document, stare at it for ten minutes, and then switch to something else. You’ll see what I mean. Getting a diagnosis is a complicated and emotional process that is so different for everyone but I had no idea how difficult it would be when we started pursuing it. So I thought I’d write out my experience, just to put out into the world one version of the story. Maybe yours is similar, maybe it’s different. Hopefully you’ll get something out of it either way. And if you’re trying to get one, maybe this will give you some idea of the hurdles. I don’t want to scare anyone off; it was a brutal experience but it was absolutely life changing and life saving, both for my mental health and for who I am as a person.
I’m going to split this into two posts because although they’re linked, the processes for getting the mental health diagnoses and getting the ASD diagnosis were very different for me. I don’t know if that’s the same for everyone. This post will be about getting the ASD diagnosis and follows on from the one about my mental health diagnoses. If you’ve read that one already, you’ll know that it took several years to get to that point.
During our search – mine and my Mum’s – for an explanation as to why I was struggling so much, Autism came up several times. We didn’t pursue it straight away because I didn’t fit what we knew of it and because multiple health professionals had dismissed it. So we focussed on the mental health perspective and managed to get those diagnoses in January 2015. But it kept coming up and after talking to practically everyone we knew, we ended up at ASSERT, a local charity that supports people with Autism Spectrum Disorder. On their advice, we contacted the Brighton and Hove Neurobehavioural Service and that resulted in an assessment (in August 2015).
The assessment itself was pretty intense: three hours of answering questions about my life and my experiences, followed up by another appointment where it was all explained to me. The woman who assessed me was lovely, which made it easier, but it was exhausting. Afterwards, I received an eight page report with all the relevant information. I know I’ve already written a post about the presentation of Autism in women but this is the more detailed, clinical side of it, to give you an idea of what was asked and what went into getting an Autism diagnosis.
The questions – and the report – were broken down into several sections:
As a child, me and my brother played make believe games that involved the creation of very elaborate worlds, with characters and histories, and they often lasted for months, if not years. My other staple ‘game’ was arranging my toy animals into “carefully crafted scenes.” I did this over and over again, in a “notably ordered and systemised” way.
I was incredibly shy and although my speech and language were ‘well developed,’ I did struggle socially. I didn’t have many friends but the friendships I made were incredibly important to me (“the very commonly observed capacity for young women on the spectrum to make very intense, uncompromising attachments to individuals”) and the loss of those connections was “deeply traumatic.”
I did well in school because I had “an unyielding need for perfection” and a “capacity for intense engagement in subjects.” No one (including me) noticed any difficulties because I was quiet and hardworking (“like many young women on the spectrum”) but having said that, I was absolutely exhausted by school. I’d get home, collapse on the sofa, and kind of zone out, almost leaving my body. Time would pass and while I was still functional, it felt like I was on autopilot until I ‘returned’ to my body. That was how I processed school and how it completely exhausted me.
The one thing that I did notice and struggle with was my absolute need to follow every rule: “Lauren has a lifelong sense of right and wrong and cannot deviate from rules.” I’ve always struggled with the way people seem to know which rules are important, who they apply to, and so on. And even when there was good reason to break a rule, I could not do it.
“Moving to the chaotic, unstructured, unfamiliar sixth form [was] deeply traumatic. It was at this point that her meltdowns and mental health became of acute, identifiable concern.” Couldn’t have put it better myself.
RECIPROCAL SOCIAL COMMUNICATION
“Although Lauren has worked hard to integrate socially, she has clear lifelong social difference.” Socialising has always felt incredibly complicated and stressful. “Lauren has the almost universal autistic sense of feeling ‘alien’ (or as if behind glass) from other people. She feels exhausted by the social world. People are mysterious and chaotic to her, and although she is highly observant of others and learns and copies social behaviours, the possibility of unpredictable social behaviour provokes acute anxiety. She shows evidence of the triad of impairment but this is scaffolded and obscured by her intelligence and vigilance.”
Eye contact is tiring and uncomfortable. It feels so intimate – too intimate. And I don’t know which eye you’re supposed to look at.
I’ve always struggled with making phone calls, particularly when it’s someone I don’t know. Because I’m only hearing someone’s voice, I feel like I’m not getting enough information to ‘read’ the social interaction and so I get really anxious about saying the wrong thing or getting overwhelmed and missing things. I can just about handle it with people I know, where I’ve learned the ‘conversational rhythm.’
It’s a myth that people with Autism aren’t empathetic. I’ve always felt like my empathy is overwhelmingly strong, to the point where it can actually incapacitate me. For example, after finding out that a friend was severely ill, I was so distressed that I was barely able to get out of bed for about three days: “[Lauren] is prone to fixating on helping people and is often very upset when this is not possible. Women on the spectrum are often highly sensitive to suffering in others and are drawn to the ‘caring’ role. This can leave them socially and emotionally vulnerable.”
I get overwhelmed very quickly, because I can’t process things as quickly as they happen. The best way I’ve found to process stuff (experiences, sensations, emotions) is to write everything down: “Lauren writes everything down in micro-detail and through this process she has learnt much about the human state and the social world that is not intuitive. The detail and perseverative nature of this recording is authentically aspergic.”
RESTRICTIVE AND REPETITIVE BEHAVIOURS (NEED FOR SAMENESS)
I’ve always had the intense focus and ‘restricted interests’ that people often associate with Autism. I’ve bounced from one to another to another my whole life. When I was twelve, I wrote a twenty thousand word story that I researched in “encyclopaedic detail.” I even knew the longitude and latitude of where all the characters were throughout the story. Every detail is important: “Authenticity is of enormous importance to her.” A truer statement was never made and it’s true for every part of my life, from my songwriting to the clothes I wear.
I’ve also always had a “strong need for sameness and routine.” I didn’t even really realise it until I was asked. Everything I ‘routinely’ do has a very precise order: “She has certain non-functional rituals that she needs to perform in order to feel safe and soothed.” And any change – big or small – can send me into a spiral of anxiety, which can lead to a meltdown. “She has a need for perseverative repetitive activity to soothe her anxiety and dampen the flood of intrusive information. She has the same TV programs on and listens to the same audiobooks again and again.”
I have always been “highly sensitive to sensory phenomena.” I struggle to manage and process se nsory information but with sound and taste in particular. But all of my ‘sensory sensitivities’ increase when I’m under stress.
“[Lauren] appears to be particularly affected by multiple streams of sensory experience: finding, for example, places where people gather cacophonous, overwhelming and she is swamped in anxiety about all the possible permutations of each person’s life.” When I walk down the street, I’m overwhelmed by the fact that every person I pass has favourite colours, foods they don’t like, phone numbers they can’t remember, important dates coming up, and so on and so on and so on. It’s beautiful and terrifying and exhausting.
One of my biggest issues sensitivity-wise is with food and I’ve struggled with it all my life. I’m very sensitive to taste and texture so I can only eat plain foods and I hate having different foods touch each other. I find pretty much everything to do with food overwhelming: the ingredients in a meal, the preparation of food, all the sensory information… This is apparently a common autistic experience.
“Some evidence of hypermobility which is a unifying diagnosis with autism.”
“The essential features of ASD as specified in DSM-V are persistent, pervasive and sustained impairment in reciprocal social communication and social interaction; and restricted, repetitive patterns of behaviour, interests, or activities and may be most apparent in difficulties in processing and responding to complex social cues. These symptoms are present from early childhood and limit or impair everyday functioning.” My assessor took in everything we’d told her and determined that I met the diagnostic criteria for Autism Spectrum Disorder, at level one, which is ‘requiring support.’ I meet all the difficulties likely to be experienced at this level.
“It is apparent that Lauren also has issues pertaining to personality disorder. She was vulnerable to the development of personality disruption due to the complexities of her developmental difference and her experience growing up (essentially as a ‘square peg in a round hole’) was sufficiently complex and invalidating as to cause her enduring distress and propensity for emotional intensity.”
Getting the diagnosis itself was very affirming but the conclusion of the report was also really positive: “She has amazing potential and I am really hopeful that, in time, this explanation will come to be a meaningful map for a resilient and contented future.”
This isn’t a complete report, just some snippets to give you an idea of what the session was like and some of the traits that make up an Autism diagnosis. It’s not a checklist or the ASD criteria. I just remember having no idea what was going to happen and the anxiety that that caused me. So if I can make it less scary for someone else, that’s something I really want to do.
(Again, no relevant photos but here are some from around that time.)
Category: about me, autism, bpd, diagnosis, emotions, event, school Tagged: actuallyautistic, anxiety, asd, autism, autism awareness, autism diagnosis, autism in girls, autism in women, autism spectrum disorder, autistic, autistic adult, diagnosis, diagnostic process, sensory, sensory information, sensory sensitivity
Posted on August 18, 2018
This is something I’ve been meaning to write about for a while but it’s such a big topic that I was very daunted by just how much I needed to include. I’d open a word document, stare at it for ten minutes, and then switch to something else. You’ll see what I mean. Getting a diagnosis is a complicated and emotional process that is so different for everyone but I had no idea how difficult it would be when we started pursuing it. So I thought I’d write out my experience just to put out into the world one version of the story. Maybe yours is similar, maybe it’s different. Hopefully you’ll get something out of it either way. And if you’re trying to get one, maybe this will give you some idea of the hurdles. I don’t want to scare anyone off; it was a brutal experience but it was absolutely life changing and life saving, both for my mental health and for who I am as a person.
I’m going to split this into two posts because although they’re linked, the processes for getting the mental health diagnoses and getting the ASD diagnosis were very different for me. I don’t know if that’s the same for everyone. This post will be about getting the mental health diagnoses.
My mental health problems became very acute when I failed an exam at sixth form in March 2013. I was eighteen and it was the first time that had happened. There’s a lot of stuff behind why that was the breaking point but I’ll talk about that in a different post. Otherwise we’ll be here forever; I’m already splitting this post in half. I hadn’t been oblivious to my mental health up until that point but I hadn’t recognised the signs for what they were; my knowledge of mental health had been pretty limited. But I’d always felt like there was something wrong with me (I now know that it’s different rather than wrong but that’s how it felt and sometimes still does feel) and I know that my depression and anxiety had been building up to that moment, that critical incident.
After that, I started seeing a psychiatrist that a family member had recommended (my GP had been unhelpful at best and distressing at worse). He diagnosed me with Clinical Depression and gave me an anti-depressant called Paroxetine to try. I don’t have enough experience to judge whether he was a good psychiatrist or not but I don’t remember feeling particularly supported by him. I only saw him a few times before I switched to a psychiatrist closer to where I lived. The Paroxetine made me incredibly sleepy; it was like they put me into a waking sleep that I still don’t feel I’ve really woken up from. I switched to Sertraline but that was even worse: I felt like a zombie and that was so upsetting that I (unwisely) stopped taking it cold turkey. That was a Bad Move, such a bad one that I still capitalise the first letter of each word. For a while I was very dissociated and then my anxiety came back, even stronger than it had been before. So I was a bit put off by medication but the diagnosis was helpful and I started going to CBT.
That ended up not being the right thing for me and the energy it took was just too much so I quit, not forever necessarily but I needed a break and we wanted to explore some of the other options. I tried several other things over the next year before deciding to try medication again. Both that first psychiatrist and the CBT consultant had been private but I couldn’t get the NHS to help me. I have to say here that I have so much (SO MUCH) respect for the NHS. It has saved the lives of several of my friends and I will defend it to the death but I don’t feel it has yet got it right when it comes to mental health. In my case, my anxiety was so bad that I found it incredibly difficult to talk to people I didn’t know. My Mum would explain the situation but we were repeatedly told that if I wouldn’t talk they couldn’t help. That was very distressing. Logistically I understand that it’s more difficult to communicate if a person can’t talk but that’s not an excuse to refuse care. The not talking was a result of my anxiety, which falls under their job description. They should’ve helped me. They should’ve at least tried. But they didn’t and I was struggling so much that we were forced to go private. I am endlessly, endlessly grateful that my family have been able to make that possible. It has, without a doubt, saved my life.
We found a new psychiatrist in the summer of 2014 and after such a horrible year, I was determined to make it work. I walked into his office, sat down, and started talking. I still don’t know how I did that. I was just as anxious as I had been before but I guess that’s desperation for you. Maybe it was my survival instinct. Anyway. My psychiatrist has since told me that he couldn’t believe I had such bad social anxiety because I had been so articulate and direct. Again, I’m putting that down to desperation (and I wouldn’t be surprised if the ability to mimic ‘normal’ behaviour – something that many girls with autism have learnt to do – came into play here too). But as I told him more, he started to understand where I was coming from and what I was dealing with. He put me on Phenelzine, which made a massive difference (I’ve written more about that here) and we continued our sessions so that he could get as much information as possible.
I wanted him to give me a diagnosis. I wanted a name for the thing (or things) that had so much power over me. I wanted to know what was really me and what was this indistinct, suffocating black shadow. I thought he’d have me do a load of diagnostic tests and questionnaires and then give me his findings but it felt more like therapy, but with a focus on my past experiences (rather than strategies to move forward). He didn’t seem in a hurry to find the answers and I didn’t know how to fast track the process. Eventually we got the deadline I wanted: my university said they couldn’t help me until they had an official diagnosis. But again, it wasn’t how I’d expected it to be and again, it was incredibly slow. Throw in that I’d just started university (which came with new people, new classes, and commuting into London) and I was under a lot of stress, as you can probably imagine. How I didn’t have more autistic meltdowns, I have no idea.
I couldn’t just do nothing. I spent hours searching the internet, looking for anything that might explain my experience. I examined diagnostic criteria and read medical papers; I scrolled through forums and took diagnostic tests. I’ve read a lot about the back and forth on self diagnosis (something I definitely want to discuss in more depth at some point) but for me, I needed a professional diagnosis, both to get the help I needed and to validate how much I’d struggled. Grouping my symptoms together and trying the strategies advised for whatever label fitted that group wasn’t going to be enough. So I used those test results as a starting point. Eventually I came across Borderline Personality Disorder and more specifically, the ‘quiet’ presentation of BPD. This means that they have many of the same symptoms (including mood swings, problems with self worth, unstable identity, and difficulties with relationships) but rather than ‘acting out’, they ‘act in’: they direct their negative emotions inwards, hiding them rather than projecting them onto others. Many struggle with issues around self hatred and self harm. If they lie or manipulate, it’s to protect themselves from perceived abandonment and they may avoid or distance themselves in relationships because they don’t want to be abandoned or because they feel they don’t deserve those connections. The ‘quiet’ presentation made a lot of sense to me because while I struggled with many of the problems associated with BPD, I rarely lash out so this felt like something to explore.
So, buoyed by momentum that discovery had given me, I took it to my psychiatrist. And he shut me down straight away. He said that I didn’t fit the criteria and moved on to something else. I didn’t understand: I was struggling with so many symptoms associated with BPD, almost all of them when you factor in the ‘quiet’ presentation. I couldn’t believe that it wasn’t worth, at the very least, a little bit more discussion. And at the end of the session, he said that he thought we’d done all we could do. I was devastated. And incredulous: we hadn’t achieved anything. If that was it, I was back to square one. Or minus one after everything the process had taken from me.
That session sent me into the worst place I’d been and after a particularly horrific meltdown, I spent several days in a fragile, barely responsive state. But once I recovered from that a bit, I got to work. I went back through my research and symptom by symptom, anecdote by anecdote, I wrote down everything I related to, everything I’d experienced, anything that could be relevant. It wasn’t that I was certain it was BPD, it was that I was certain it was something. This seemed as good an explanation as any and my psychiatrist wasn’t offering anything better.
When I was done, the document was seventeen pages. I’m pretty sure it was longer than my dissertation for university. And then we went back. I presented him with all my research and something very surprising happened. I’d hoped he’d accept it as something to explore and not only did he do that, he admitted he’d been wrong and apologised for dismissing it. Even now, that feels like a very important moment. In my experience, medical professionals aren’t naturally inclined to apologising, let alone admitting to being in the wrong. And I’d been ignored for a long time. When it came to my health, physical and mental, doctors had always looked at the most obvious option and then, when that didn’t fit, they’d just shrugged their shoulders and brushed me off. So this was a big deal.
And at the end of that session, I had my diagnosis. Or more accurately, my diagnoses. He pulled together everything he’d learned about me and diagnosed me with Borderline Personality Disorder, Anxiety, Social Anxiety, Depression, and OCD. It was a very strange experience. Momentous and anti-climactic at the same time. I felt light enough to float away but so exhausted and heavy that I wasn’t sure I could get out of my chair. I felt like I might burst into tears at any moment but I had this weird, hysterical urge to laugh. I felt invincible and incredibly fragile at the same time. Very strange.
Finally getting names for the monsters I’d been struggling with was incredibly validating. It was real. I wasn’t ‘crazy’ or ‘over dramatic’ or ‘too sensitive.’ It also made it real to everyone else. And although part of me was steadfast that something was wrong, I had started to doubt myself, having been dismissed by so many people. I was constantly fighting against falling into a well of despair, of fear that this was just going to be how life was for me. But the diagnosis confirmed that they were problems and most problems have solutions of some sort.
The diagnosis enabled me to get the support I needed at university and gave us some idea of what kind of talking therapy might help. Dialectical Behaviour Therapy (DBT) is recommended for people with BPD and that’s what I’m still doing, about three years later.
(I have no relevant photos for this post so here are a couple from around that time.)
Category: anxiety, bpd, depression, diagnosis, mental health, ocd, therapy, university Tagged: actuallyborderline, actuallybpd, actuallydepressed, anxiety, anxiety disorder, borderline personality disorder, bpd, depression, diagnosed as an adult, diagnosis, medication, mental health, mental health awareness, mental illness, mental illness awareness, mental wellness, obsessive compulsive disorder, ocd, paroxetine, phenelzine, sertraline, social anxiety, social anxiety disorder
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.
Hi! I’m Lauren Alex Hooper. Welcome to my little blog! I write about living with Autism Spectrum Disorder, as well as several mental health issues. I’m a singersongwriter 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.
My second single, ‘Bad Night,’ is also now available on all platforms and is the first track from my new EP, ‘Honest.’