Meltdowns, Halsey, Halsey, and Meltdowns

I’ve never really written about meltdowns before. Not long after I started writing this blog, I started taking Venlafaxine for my depression, which essentially numbed me to all my emotions. And since my meltdowns have always come from an emotional place, I basically stopped having meltdowns. But I couldn’t deal with not being able to feel anything: everything I do – writing, songwriting, relationships, choices – everything I do is based on emotion. So I came off that medication and my emotions (and my ability to think clearly) came back. But I hadn’t had any meltdowns until recently.

A couple of weeks ago, I was supposed to be going to see Halsey in London, something I’ve been looking forward to for years. Since I saw her in 2016. I love her songs – a masterclass in lyric writing, melody, production, songwriting in general – and she’s an incredible performer, one of the best I’ve ever seen. I particularly love the Badlands album: somehow the songs just make me feel brave. So I was really, really excited.

If you’ve been keeping up with my blog, you’ll know that my depression has been particularly suffocating recently and when it’s that bad, being out and around people is incredibly difficult. Sometimes talking about those emotions and the strength of them is helpful: just letting it out of my body lessens the pressure and makes it easier to cope but sometimes, like this time, it’s like a crack in the dam. It just started pouring out and I couldn’t reign it back in. I was desperate to get to this show though so I kept trying.

My Mum drove me to the station but when we got there, I couldn’t get out of the car. It was like a magnetic force preventing me from getting out of my seat, from making decisions. My Mum suggested alternative ways of doing the day but I could feel all the possible decisions and deviations spiralling away from me and I ended up shouting that I needed her to stop (all that anxiety and stress and emotion just exploded out of me). I just couldn’t. I couldn’t find the right decision but I knew when they were wrong. So my Mum said she was going to drive me to London and take me to the show. That’s the only way I was going to be able to go. So that’s what we did.

This is one kind of meltdown. There seem to be different variations of them based on the situation. Usually, I can’t do anything after having one; usually I just have to go and sleep until I feel like myself again. But my desperation to go to the show pulled me through all of that somehow. It took me over an hour to be able to think clearly and make sentences again and by the time we got to the show, I was just about functional – I could walk, I could interact with others (although I still couldn’t make eye contact with anyone) – although I felt like I was in a different dimension to everyone else: we could see each other and interact but it was like we were on different frequencies. I’m mixing my metaphors I know. Meltdowns mess with your head.

It was an amazing show. Halsey shows are unlike any other shows in my experience. She gives everything to her performance. The energy is just off the charts, her vocals were incredible, and the stage/backdrops are complete works of art. The songs I loved before, I loved even more. The songs I liked before, I loved by the end of the show. The performances and the stories she tells about them make every single song special and I will hold on to all of it forever.

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Because of the meltdown, I was in a really strange headspace: I felt far away and disconnected and kind of lost. So I couldn’t enjoy the show in the way I would have had I not had the meltdown. But I did enjoy it and looking through my photos and videos makes me so, so happy and grateful and proud that I managed to get there. And it helped somehow. I can’t really explain it but it helped. It’s like it filled in all the cracks with gold, to use a Japanese art form as an analogy.

I got home, went to bed, and got up the next day, ready to do the whole thing again, although without the meltdown (or so I thought). As an autistic person and a concert lover, I really like to go to shows twice where possible. With the lights, visuals, music, the scream, the energy expended, the energy expended getting there… I find it incredibly difficult to process everything and I get overwhelmed very quickly. It all starts to pass through me without really landing. Fortunately, the only thing I really spend money on is concerts so that is something that I am sometimes able to do.

For several days after a meltdown, I feel really, really fragile. So my Mum – my hero – said she’d come to the show again. Thank goodness she likes Halsey too.  So we drove up to London, got to the venue, and really enjoyed the show. My god, Halsey is just so good. And seeing it twice just meant that I could take in all of it and that was just so amazing. Some of my favourite moments include (I could easily list everything but I’ll try my best to just keep it to a few):

  • The opening song, ‘Eyes Closed,’ will always be special to me because of the feeling it created. The energy in the room lifted by tenfold and it was the closest thing to magic I’ve ever experienced.
  • How she left it to the crowd by shout the lyric, ‘Do you call yourself a fucking hurricane like me?’ I wasn’t expecting that and the intensity of the crowd just took my breath away.
  • The visuals for ‘Hurricane’ were the most beautiful things I’ve ever seen. And during the song, she shouted, ‘London, this song is a reminder that you do not belong to anybody but yourself!’
  • The little B stage that I thought was made up of LED lights but was actually covered in water (I really have no idea how to explain it) where she and her dancer stamped and kicked water into the crowd during ‘Don’t Play.’

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  • The volume of the crowd when everyone sang along to the stripped down version of ‘Closer.’
  • The way she sat and talked to us, the story she told about ‘100 Letters,’ and how she finished by saying, ‘You only get one you in this life. Do not waste it on someone who doesn’t appreciate who you already are.’ Maybe it sounds cheesy but in the moment, it almost brought me to tears. I’m tearing up even now as I write this. The shows were just one empowering moment after another and for that, they will always be incredibly special concerts to me.
  • The beautiful flower backgrounds for ‘Now or Never.’

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There are so many more moments I could name but I’ll leave it there. They were two really incredible concerts and I feel so lucky to have experienced them.

When the show finished, I was absolutely exhausted, physically and mentally. Walking down the stairs to the venue exit was physically painful. I’d specifically bought a seated ticked because I don’t have the energy at the moment to stand for such a long period of time but there were two girls who stood for the whole thing (almost everybody sat behind them ended up standing in the aisle so that they could see – they refused to sit down or move despite the disruption they were causing) so I kept having to stand up to see. My whole body hurt by the time it was over. Apparently that’s another unexplained Autism thing: fatigue and pain and so on with no obvious cause.

We made it out of the venue and were halfway across the street – standing on the traffic island – when an ambulance less than a few feet away turned on its siren. I don’t know if I can really explain it: it’s something so deeply rooted in emotions and sensory stuff that I’m still searching for the right words. I might never find them. But the sound – the high-pitched, ear-splittingly loud sound – just completely overwhelmed me in a split second. It was like it blew a fuse in my brain and suddenly I was screaming and my knees buckled and I would’ve hit the ground if Mum hadn’t caught me. At some point the screaming turned into crying and shaking and somehow my Mum got me onto the tube, back to the car, and home to my bed and my cats. It took most of the journey before my brain reengaged and I could think in complete sentences but even then I couldn’t talk. It just took too much energy.

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We got home, went to bed, and I spent the next few days recovering. In truth it took me over a week to feel like myself again and to process and commit to memory the amazing moments from the concert before the meltdown, before my brain shut down. It was a lot to make sense of. Meltdowns are traumatic and I don’t use that word lightly. I will write more about them, when I’m in a more stable, more composed place. I’m more than a bit all over the place at the moment. But this page here is an amazing resource so do have a look at that if you want to know more about meltdowns (and shutdowns).

And just in case:

Thank you Halsey (I never know whether to think of you as Halsey or as Ashley). Thank you for an amazing show and a treasured experience. It might’ve been a rough weekend but the shows were worth the meltdowns. Concerts make me feel alive, make me feel real. You gave me that and I’m really grateful.

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Things I’d Tell My Younger Self

Have you seen the book where various different celebrities or famous people write letters to their younger selves? Some of them write pages and pages and some of them write a sentence, maybe two. But the majority of them reveal very little about their lives because they believe that the journey to the major events is as important as those major events. I don’t disagree with that but considering my levels of anxiety, it wouldn’t be the worst thing in the world for my younger self to have a little more certainty. Most of my stresses, then and now, are about the future so this would’ve been the perfect thing to calm younger me. Obviously this is a hypothetical exercise since we haven’t actually invented time travel and therefore don’t have to worry about causing a paradox that dramatically alters human history. We’ve all seen enough sci fi to know that that always ends badly.

  • Your grades are only important for the next step. I know everyone keeps talking about how universities and jobs all look at your GCSE results and maybe in some fields – like medicine or if you wanted to be an astronaut (yes, I know, there’s a little bit of you that really does want to be an astronaut but, spoiler alert, that hasn’t happened yet) – that’s true but for the most part, your GCSEs only matter until you have A Levels and then your A Levels only matter until you’ve got a degree. Hopefully, you get my point. Try not to stress too much. If you get a grade that wasn’t as good as you wanted, feel it, process it, and let it go. Move on to the next thing. It will be okay. There’s always more than one way to get somewhere.
  • Try not to worry about fitting in. I know you wish that you could be like the beautiful girls who all seem to have it so together but it won’t always be like that. The years will pass and you’ll be glad that you have your life and not theirs, not because there’s anything wrong with their lives but because you are where you’re supposed to be. I hope.
  • You will get to Nashville. I know how much you want it. I’m not going to tell you how it happens because that journey is important but I promise you that you’ll get there and it will be worth the wait and the effort. I know it’s stressful and you’re terrified that you’ll never get there but you will. And it will be magical. Take it from someone who knows.
  • Don’t let people treat you badly. You don’t deserve to be treated that way. There will always be people who think it makes them superior (*cough* or a better teacher *cough*) but it doesn’t. I know it’s really emotionally overwhelming but you are strong enough to stand up for yourself. I promise you, you are.
  • It’s okay if you feel like you’re never going to get through something or if you feel like things are never going to get better. People will tell you that you will and you won’t believe them but that’s okay. There are things in life that you can’t know until you’ve experienced them. You can’t take pathways in your brain that you haven’t forged yet. So, when people tell you that time heals everything, try not to despair. They can say that because they have had that experience. It’s okay that you don’t yet. So keep going, keep living, and try to remember that everything you do and everything you experience is shaping you into the person you have the potential to be. And, chances are, a person who knows that time heals and a person who will annoy the shit out of a younger person by saying that time heals.
  • You are so much stronger and can endure so much more than you think you can. I know that that’s not always a blessing but we have to believe it is, you and me. You’re gonna go through the wringer and it will feel really unfair but you’ll get through it. At the very least you’ll make it to twenty-four.
  • There’s a reason you’re feeling the way you are. This is the point I’ve thought about most, about whether or not I should include it, but my gut says that I should. You’re autistic. I know that seems like a weird idea but you’ve always felt like your brain works differently to everyone else’s and this is why. Your only experience of Autism is the boy who was always being told off for being disruptive in primary school and most of the time, it’s really different for girls. You’ll figure it out, you’ll create a relationship with it, and what you learn will help other people.

Ultimately, there’s not much to be gained from wishing you could change the past and while there are things I wish had been different, I don’t think I’d change almost any of the things I had control over: the people, the pursuits, the loves… I’d choose them all over again.

Getting A Diagnosis – The Autism Edition

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:


DEVELOPMENTAL HISTORY

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.”

SENSORY SENSITIVITY

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.”

CONCLUSION

“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.)

Introducing my Mum

In this post, I’d like to introduce my Mum, Sandra. We’ve been talking about her writing a post or two for a while because I think she’s got some really valuable stuff to add to the discussion of Autism, and Autism in women. Most of the resources around Autism tend to be written by parents of young children and while that viewpoint is important, the lack of any other viewpoints is something that needs to be addressed. There’s very little written by young people with Autism and I can’t find anything written by the parents of young people with Autism. So we thought we’d throw this out there.

We’ve never had a typical relationship: I’ve never felt the need to rebel and I can probably count on one hand the number of times we’ve really argued. We just get on really well and we share everything; we talk everything through. So she’s been on every step of this whole journey with me, from the moment I realised that what I was feeling wasn’t normal. She must’ve talked to hundreds of people – friends, family, health professionals in multiple fields – and spent hours and hours reading up on every possibility. She’s been to every appointment with me and she came to therapy with me until I felt confident enough to do it by myself. She pushes me when I need pushing and she protects me when I need protecting. I genuinely wouldn’t have made it this far without her. She’s always believed in me and she’s never stopped pushing to get me the help I needed, not for a moment. I am more grateful than I could ever express. She spoke for me when I couldn’t and she still does if I need her too. I only have to ask and she’s there. She is my hero. I couldn’t be me without her.

Here is a little paragraph from her to start her off:

‘Get out and take up dancing!’ was one of the many pieces of well-meaning advice I was given during my search for help for Lauren. ‘Tough Love’ was another suggestion and was just another way of saying the same thing. Because of the age she was when we started seriously looking for answers, many people, both professional and otherwise, saw much of her anxiety and depression as the ‘normal’ behaviour of an adolescent. But I felt there was more to it and knew I had to try and get some answers. So I began researching: talking, reading, anything to better understand what I saw Lauren struggling with. Now, several years later, I still remember my response to that suggestion: ‘I will take up dancing once I find the help my daughter needs’. And I have been lucky. We have been lucky. We have found some extraordinary people to help and support her but it has often been a long and isolating journey and one that I wonder whether might be useful to share for other parents or carers finding themselves in a similar situation.

We’ve been throwing some ideas around but nothing’s written yet. Between work stuff, moving house, and my mental health, there just hasn’t been the time. But we’ll get there. Stay tuned!

 

Learn With Me

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:

  • Expectations, my own and those of others – Having grown up assuming I was neurotypical, I have always compared myself to my neurotypical peers and hated myself when I couldn’t measure up. When I got to sixth form, I started to really struggle (mentally, socially, academically) and so the whole thing started to snowball. And because I was comparing myself so viciously to those around me who were coping so much better, I did great damage to my mental health and self esteem. Had I known that my brain worked differently and that I might need support, those two years of my life would most likely have been an altogether different experience. Even now that I know the difference is there, I still find it really difficult not to compare myself to others; I still often see myself as less capable or less intelligent or less whatever word is relevant to the situation.
  • The mental health consequences – While this is not something I can scientifically prove, the chances are that this whole process has had an impact on my mental health. Being repeatedly invalidated and brushed off definitely made my depression and anxiety worse. That invalidation may also have triggered the development of Borderline Personality Disorder; I’m not qualified to make a definitive statement on that but between discussions with my health professionals and my own research, it’s a theory if nothing else.

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.

Living With The Volume Up Loud

I have always been incredibly sensitive, ever since I was a little kid. It was one of the words used most commonly to describe me as I grew up. While it was usually emotional, I was also sensitive to what was going on around me and that seems to have increased over time. I can get overwhelmed by all the sensory information coming into my brain and I end up struggling to process it all. The processing can get stuck or I’ll zero in on one specific thing, like tunnel vision. It can also happen emotionally. The smallest thing can unsettle me and it can take hours or days to come back to myself. When I was diagnosed with ASD, someone described this really well to me: where neurotypical brains can filter out information that isn’t relevant (not ignoring it but not consciously processing it), neuroatypical brains can’t, so all the information comes in at the same volume and overwhelms the brain.

I struggle a lot with noise. Loud, sudden noises, like a slamming door or a fire alarm are very upsetting. It’s like they’re inside my body, inside my head, and before long, I can’t think and my anxiety overwhelms me. If it ends quickly, I can slowly force it back until I can function again but if it continues, it can lead to a meltdown where I lose all control of my emotions and thinking. It’s awful.

When it comes to studying or writing (although not songwriting), I need some background noise, almost to fill the space around me and in my brain. I often refer to the earlier example of information coming in through every channel: if I listen to something familiar, like a well watched TV show or audiobook, it’s like I’m filling some of those channels with something that I don’t need to process because I’ve already processed it, leaving me with only the channels I need to work on whatever it is I’m working on. Having said that, if there are too many different sounds going on, I start to get overwhelmed. It’s like my brain can’t balance them correctly, focussing on one too much and not hearing the others and so on. As you can imagine, that can make playing music quite difficult. I’m finally getting into the habit of carrying earplugs around but that has issues of it’s own: I find the sensation of essentially blocking my ears a difficult one, plus they’re pretty uncomfortable.

I’d never really thought of myself as being sensitive when it comes to touch but the more I think about it, the more experiences come to mind. I’m pretty specific about the fabrics I can wear and there aren’t many things I can put on my skin. It doesn’t take much before it feels unclean and once that feeling sets in, I can’t shake it. It’s horrible. There have been a few days where even multiple showers won’t fix it. I’ve also had some pretty bad reactions to various soaps and make up products, even those labelled as suitable for sensitive skin. The most dramatic example of this was when I was given perfume for my birthday. I love the smell of it but wearing it causes this weird reaction: my eyes water, my nose itches, my throat hurts, and so on. The worst part is how badly it irritates my lips: the skin burns and splits and it can take days to heal. And I don’t even have to be wearing the perfume to have that reaction; I only have to be wearing something I once wore with the perfume. Washing and airing the clothes hasn’t seemed to help much but I’m holding out hope that it will eventually fade.

My relationship with food needs it’s own post (I’ll get there, I promise!) but I think it’s important to mention in this context. I am really, really sensitive when it comes to food, so much so that I can only handle pretty bland stuff. This used to be a big problem because my family is pretty adventurous when it comes to trying different recipes and that often caused stress and anxiety all around. I got labelled as a picky eater and the most common response was to push me to eat the things I didn’t like, assuming that the experience would get better. But it didn’t; I just got more and more anxious around food. But since the diagnosis, it’s been easier. Well, easier to manage. It’s something that people can understand and that has really lessened the pressure on me. Now, the people around me let me decide what I can and can’t handle. I struggle with both texture and with taste and that can make some food impossible to eat. I get so overwhelmed by all the flavours that I can’t taste any of them individually. It’s like throwing a load of different coloured paints together: you don’t see all the different colours, you just get one new colour and it often isn’t a nice one. And that links into being really sensitive to smell. Something that those around me can’t smell can overwhelm me like a fog. It gets into my throat and my eyes. I won’t be able to focus and often have to leave the vicinity.

There are other things that overload my brain and while they aren’t exactly to do with my senses, they feel pretty similar. I guess they’re based on intuition and it seems that my intuition can be as amplified as my other senses.

Being in a crowd of people also overwhelms me emotionally. I get overloaded with how everyone has a name, a favourite colour, family, friends (who all have names and favourite colours), foods they hate, superstitions, dates they always remember, phone numbers they always forget, movies they quote, and so on and so on and so on. I get overwhelmed by how much is in everyone’s lives and I end up feeling like I’m being crushed by the weight of that. I feel like I can’t breathe. Some days I don’t feel it so strongly but on the days where I feel really fragile, like I don’t have any skin, it’s very, very stressful.

Another thing that needs it’s own post is my reaction to other people’s emotions. I feel like a lightning rod for them, especially the strong ones. I want to write more about this at some point but again, it’s relevant here. When I’m around anyone feeling a strong emotion, I start to feel it too. Most commonly I feel other people’s grief. And there’s always guilt mixed in: they’re not my emotions so I shouldn’t be feeling them. But I can’t help it. And it doesn’t take long for me to feel overwhelmed by all of that.

All of these things become exponentially worse when I’m stressed or anxious which, of course, is when I feel least able to cope with it. I don’t know if it’s something I can change, or whether my brain is wired this way, making everything so intense. Maybe it’s both. Maybe it’s neither.

The Consequences of an Autism Diagnosis

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.

POSITIVES

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.

NEGATIVES

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.

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