Posted on October 20, 2018
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.
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):
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.
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.
Category: autism, depression, emotions, event, meltdowns, mental health Tagged: actuallyautistic, anxiety, asd, ashley frangipane, autism, autism in girls, autism in women, autism spectrum disorder, autistic, autistic adult, autistic meltdown, autistic meltdowns, badlands, concert, depression, halsey, hfk tour, hfktour, hopeless fountain kingdom, hopeless fountain kingdom tour, live music, london, meltdown, meltdowns
Posted on October 13, 2018
Going to therapy hasn’t always been easy. I feel so, so lucky to have such an amazing therapist now but I had a lot of difficult experiences before I started seeing her. So I thought I’d share some of those experiences. Maybe they’ll be helpful.
After many, many appointments with my GP, I was finally referred to the local NHS Wellbeing service but the session didn’t go well. At this point in time, my anxiety was so bad that I couldn’t talk to people I didn’t know. I just couldn’t. Answers to questions would form in my mind but I couldn’t force them up my throat. So I sat there, in tears, while the doctor tried to get my Mum out of the room and told me he ‘wouldn’t’ help me if I didn’t talk. I don’t want to rant but I WAS STRUGGLING WITH A MENTAL HEALTH PROBLEM. I wanted desperately to be able to talk about it but I couldn’t. I don’t remember much about that appointment but I do remember standing in the street afterwards, shaking and crying and screaming and swearing. I couldn’t understand why no one was helping me when there was so clearly something wrong.
My second attempt at therapy was a bit better. I started Cognitive Behavioural Therapy (CBT) with a really lovely therapist. She was very patient and very open to working around the anxiety that kept me from talking. She was also happy to have my Mum in the room: it helped my anxiety and meant she could provide information. Slowly I started to trust her and started answering questions myself. But it was exhausting, bone achingly exhausting. As hard as we worked, I didn’t feel like we were making any progress and it was too hard to go through that to make no progress. I really liked her and I could tell that she was a really good therapist but the approach wasn’t right for me. I found the format too rigid. In simple terms, CBT is about breaking down your problems and then trying to create change in those areas. I felt, and still do feel, that my problems are too murky for a short stint of CBT. I know now that many of my problems originate from my Autism and the fact that it went undiagnosed for so long but even with that knowledge, the difficult things still feel overwhelmingly huge. I can see CBT being useful for a specific anxiety. For example, we tried to work on my anxiety around making phone calls. But I think the reason it didn’t work is that it wasn’t an isolated problem; it was a piece in a much bigger puzzle. I don’t think you can solve that sort of problem if you don’t know what’s causing it. Plus, being rational about what you’re struggling with in the controlled setting of therapy and being rational when it’s overwhelming you are very different things. CBT sort of assumes that you can still apply the skills you’ve learnt in therapy regardless of how you’re feeling, which can feel impossible, especially if you live with really powerful emotions. But maybe that’s just my perception.
The next thing we tried was Eye Movement Desensitization Reprocessing (EMDR), recommended by a family member. In the few months between finishing CBT and starting EMDR, my anxiety had sky rocketed so starting a new therapy was really hard. It was so bad that I actually never spoke to the guy I worked with. But despite that, and my difficulty with eye contact, communicating with him was easier than it had been with previous therapists. He was fantastic. He accepted my difficulty speaking and suggested writing on a whiteboard. I considered that and it felt possible so that’s what we did. He asked me questions and I replied, scribbling as fast as I could. It worked. And to take the pressure off, we would spend part of the session on the floor, playing dominoes while he asked me questions. I felt absolutely safe there. It was incredibly strengthening to have someone accept my anxieties as they were, to have someone recognise that I wasn’t just being difficult, that I was genuinely struggling with something really hard. And although it didn’t turn out to be the right thing for me, the sessions are still really important to me. For several months, we worked hard. We tried. I felt supported. And even though I didn’t ever speak, I did once sing for him and he almost cried. That was a pretty big moment.
After that, I didn’t go to therapy for a while. There was a lot of life stuff going on and there just wasn’t the time to find someone new. But I did start seeing a new psychiatrist. He prescribed me Phenelzine (which I’ve previously written about) and we spent a lot of time trying to figure out what was causing my problems. I guess it was a type of therapy. We went through my history and analysed my emotions, trying to find a diagnosis. The medication helped and we managed the side effects but it still took a long time. When my university said that they couldn’t help unless I had a diagnosis, I pushed for this and in January 2015, I could finally put names to the issues I was struggling with (apart from the Autism diagnosis which came several months later). My psychiatrist recommended Dialectical Behaviour Therapy (DBT) so we started looking for another therapist.
My current therapist is the first one we met. I just knew she was right; me and Mum walked out, looked at each other, and said, ‘she’s the one.’ We did meet another one but my mind was made up. And we were right. She’s amazing. I’ve been seeing her for three years now and I’m so grateful to have that safe place. DBT suits me much better. It’s based on CBT but, as the Mind website says, it’s “been adapted to help people who experience emotions very intensely.” They both help with changing unhelpful thoughts and behaviours, but DBT also helps you to accept yourself. It’s about a balance between acceptance and change. That really makes sense to me and always has.
In the beginning, I needed my Mum in the room with me and she would answer all the questions. We’d always talked about everything so she knew pretty much all the answers. But over time, I felt more comfortable there. I needed Mum there less and less and eventually I started doing the whole session by myself. Three years later and it’s really, really important to me. It’s a huge part of who I am. It’s not easy; it’s really hard work and I often come home exhausted, sometimes falling asleep on the sofa afterwards. But it’s really satisfying to talk things through, to make connections, to see change happen. I’ve talked about things that I never, ever thought I would talk about and I’ve worked through things I never thought I’d let go of. That’s so huge that I can’t really comprehend it.
So that’s my therapy journey. For me, it’s DBT that works but I’ve seen the others help people too. You need to be ready, you need to find the right approach, and you need to find the right person. It’s not easy but it is worth it.
Category: animals, anxiety, autism, bpd, depression, diagnosis, emotions, medication, mental health, ocd, therapy, treatment, uncategorized Tagged: actuallyautistic, asd, autism, autism awareness, autism spectrum disorder, autistic, autistic adult, cbt, cognitive behavioural therapy, dbt, dialectical behaviour therapy, emdr, experience, eye movement desensitisation reprocessing, medication, mental health, mental health awareness, mental health treatment, mental illness, mental wellness, nhs, phenelzine, therapist, therapy, therapy experience, therapy journey, treatment
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 July 14, 2018
At the beginning of the year, I set myself a handful of goals for 2018 and as we’ve just hit July, I thought it might be wise to have another look at them to see how or whether I’m achieving them. There’s been a lot of hard stuff so far, which has pretty much dominated my life so I’m not super optimistic about my progress but let’s have a look…
WRITE MORE SONGS
Technically I have done some writing so I have achieved this but I feel like I’ve achieved it in the worst way possible. I’ve been struggling so much with my concentration, my motivation, and my general cognitive ability that writing has been gruelling at best. Throw in the recent period of struggling to actually put sentences together and you can imagine that I haven’t been getting very far. It’s hard to feel good about the songs I did manage to write too. So, all in all, it’s been a bit of a mess, but I’m cautiously (VERY cautiously) optimistic about this new medication. At the very least, coming off the Venlafaxine has allowed my brain to start functioning again. It’s overwhelming at times – it feels like a firework display in my head and I’m desperately trying to look at everything before it disappears – but it’s a thousand percent better than the alternative.
Yes! Yes, yes, yes! Invisible is out! My very first single is out in the world. It’s been very surreal and weird and I thought I’d feel less stressed once I had music out in the world, but nope. Even more stressed. Anyway, I did it. I (with the help of some very awesome people) jumped the first hurdle. That’s a big deal. Now, on to the next hurdle.
FIND THE RIGHT MEDICATION
Well, I found a lot of wrong ones. That’s all I’m sure of right now. Hopefully the new one will be the right one.
BECOME MORE INDEPENDENT
This is a tricky one because I’ve been mentally (and so physically as well) worse than I have been in a really long time. So it’s not really been the right time to try and be more independent; I’ve had a hard enough time being functional at all. But having said that, there have been a few things of note. I have been slightly more adventurous with food: I’ve been trying new things, which has always been a struggle for me, so that’s progress. I also discovered the Deliveroo app (I know, I’m way behind the times), which has helped me to be less dependent on other people. I’m not sure it’s exactly the same thing as being more independent but again, it’s progress. And finally, I found an app that makes sorting cabs easier. I have been so desperately low on energy recently that I’ve been relying on my Mum and her car so having that app has made things a bit easier.
WORK ON BEING HEALTHIER
Who knows with this one… When I was taking Phenelzine (and eating badly at university), I gained a lot of weight, all of which and more I’ve lost over the last nine months or so. That, I think, has mainly been due to the nausea I’ve been experiencing as a side effect from various medications, as well as my depression affecting my appetite and will to eat. I’m aware that that’s not the healthiest way to do it but it is what it is. I wanted to get back into a rhythm at the gym and do more swimming but I just haven’t been able to; I haven’t had the energy and I haven’t felt up to being surrounded by noise and people and life. Honestly, I have no idea how this one is going to for the rest of the year. I’ve spent the last six months or so in survival mode, trying to make myself eat the bare minimum, so motivating myself to be healthier hasn’t even felt possible.
READ MORE BOOKS (MORE THAN FIVE)
I feel quite good about this one. Although I’ve really struggled with my concentration and motivation over the last six months, I have rediscovered how much I love reading, which is so, so nice. I’ve read six books so far (what?!) and now that my brain feels a bit clearer, I’m really looking forward to reading more. I even have a list!
IMPROVE MY MUSICAL SKILLS
I have made zero progress on this one. I have just been too unwell to do anything about it. Plus, after the house move, I no longer have a piano, which obviously makes practicing the piano harder…
GO THROUGH MY POSSESSIONS
As I said when I set this one, I was in the process of moving house so I was going to be forced to do this and I was. I donated at least a third of my clothes to charity, quite possibly more, and threw out a fair amount that was practically worn out. I’ve bought my own desk (the one I had was borrowed), and replaced my bed: I HATED (and had hated for a long time) the one I had and the new one is much more practical with drawers underneath for storage. So I’ve definitely achieved this one and there’s more to go: there isn’t enough space for all my stuff in my new room. Throwing away things that I’m emotionally attached to (or have been in the past) is really hard for me so it’s been a big deal but I’ve done well so far and feel good about it going forward.
So, overall, I think I could’ve done worse and, of course, there are still six months left of the year. That’s plenty of time.
Category: book, depression, food, medication, mental health, music, treatment Tagged: actuallyautistic, autism, autism awareness, autism spectrum disorder, autistic, autistic adult, books, depression, medication, mental health, mental health awareness, mental health blog, mental health blogger, mental health blogging, mental illness, mental illness awareness, moving house, reading, singersongwriter, songwriter, songwriting
Posted on July 7, 2018
Travelling is hard work for everybody. It’s exhausting and stressful and frustrating. But add in sensory issues or anxiety or whatever it is you struggle with and it can be a traumatic experience. Since we are now in the summer holidays and prime travelling time, I thought I’d put together some things that I found helpful to do as an autistic person who struggles with anxiety. I would like to point out (again) that there is a maddening lack of resources (and even simple testimony) for or from the point of view of autistic people. I spent hours searching for something but there was next to nothing; all the advice was for parents of young autistic children. Of course that information is important but it’s very demoralising to an autistic adult – essentially being compared to a child – especially one who was diagnosed late and has had to work so hard, often unaided, to manage their difficulties.
PLAN AHEAD – I know, this is my advice for everything, but it really does help. Struggling with unexpected change is a common trait in Autism and while planning can’t prevent all of those changes, it can make a huge difference. It can also give you a confidence boost, knowing that your actions have prevented a certain amount of anxiety.
SPEAK TO A TRAVEL AGENT – Being able to hand some of the responsibility off to someone else can be really helpful, especially if you have limited energy. You have to prioritise the tasks and if there are people who can help, that is a valuable resource. These people are also more likely to know the ins and outs of booking flights and accommodations etc and will therefore be more equipped to help you get what you need and want to get the most out of your trip.
CHOOSE YOUR ACCOMODATION CAREFULLY – Having somewhere where you can have time out and recharge is so important when travelling. We all have different sensory needs and different things we can tolerate so choosing a place to stay is really important. For example, staying with other people (people I don’t know) causes me a lot of anxiety so when we look through Airbnb, we look at places that allow us to be the sole inhabitants. It won’t be the same for everyone but if you can identify what you need, you can hopefully find somewhere to stay that can be a restful place rather than a stressful one.
WRITE A LIST OF EVERYTHING YOU’LL NEED AND HAVE SOMEONE CHECK IT – Having a list makes packing so much easier and having someone check it for you just reduces the chances of making a stupid mistake like forgetting your pyjamas. Because that really isn’t something you need to deal with when you arrive wherever you’re going. Also make sure that you’ve got any medications or medical equipment that you need because those can be particularly difficult to get hold of, especially if you’re in another country.
PACK AN EMERGENCY KIT IN YOUR CARRY ON BAGGAGE – On the off chance that your bags get lost along the way, pack a change of clothes, some medication, etc in your carry on bag so that you can at least get up the next day and work out a solution.
BRING YOUR OWN FOOD – You’d need to check with your airline but there are certain foods that you can take in your suitcase that won’t cause you any problems while travelling. That means that, at the very least, you’ll have something to eat when you get to your destination. But in my case, it gave me a staple food that I knew I could eat in case I couldn’t find anything I could tolerate. It took away some of the anxiety, for which I was grateful.
PREPARE SPECIFICALLY FOR THE FLIGHT – Apparently, we’re flying in this hypothetical. Many people have fears associated with flying and while I don’t have any magic words of wisdom there, there are a couple of tricks to make it slightly less difficult, especially if you have sensory issues. Take sweets to suck on and relieve the pressure in your ears. Wearing a mask over your face can help if you’re worried about bad reactions to everyone’s germs in one confined space, as well as chemicals from perfumes etc. I’ve also found that a playlist of familiar music helps with the constant noise of flying. And wearing comfortable clothes: you’re most likely gonna look awful when you get there anyway so why bother with anything more than a T-shirt and leggings.
BUILD IN TIME OUT AND DON’T FEEL GUILTY FOR IT – Easier said than done, I know but burning yourself out in the first couple of days doesn’t make for a good trip. So try to take breaks between things and listen to your body: if you need to rest, rest. It will make the whole trip more enjoyable and worthwhile if you do.
As of now, I think that’s all I’ve got. But if you guys have any tips that you’ve found helpful, please let me know!
Posted on June 20, 2018
A few weeks ago now, I got to perform at Autism’s Got Talent, a showcase for autistic people put on by the charity, Anna Kennedy Online. The show took place at The Mermaid Theatre in London and saw about twenty different acts perform, from music to dance to magic. It was a surprising, rewarding, and fun experience so I thought I’d write a little something about it.
I really wasn’t sure what to expect. Despite getting my diagnosis nearly three years ago, it’s only recently that I’ve started to attend events for people with Autism. It took me a long time to figure out what my diagnosis meant to me and I needed some time to find steady ground before I felt comfortable to… I guess, ‘publically identify’ as autistic, if that makes sense. So I’ve only been to a few events like this and I’ve honestly been blown away by how kind everyone is. Everyone working the show was patient and engaged and that made such a difference to the whole atmosphere; it made it a lot less stressful. As a performer, I’ve never been treated badly because of my Autism but I have felt like it’s an inconvenience, that I’m being difficult for struggling with certain things. But at this event, the things that are usually considered adjustments were already built in: there was a room specifically allocated for quiet time; the instructions and explanations were really clear; there was a meet and greet the day before (with some admin stuff) so that everyone had time to get used to everything; they had a fantastic team there to help all of the performers manage the day, all of whom only had two acts to look after; and if anyone was getting stressed, they did an excellent job of remaining calm and composed. These things made for such a supportive environment before and during the show and made the whole thing such a pleasure to be a part of.
The day of the show was a long one. We had a tour of the venue so we knew where everything was and then we got started on the sound check. Despite the long list of performers, I didn’t feel rushed at all: we were encouraged to take our time and get comfortable. Having gigged quite a lot in the last few years, I’m used to doing everything at breakneck speed (only to wait for ages for something else usually) and while I can cope with it, not having to was a real gift. I really appreciated that.
An interesting opportunity I hadn’t foreseen was the chance to be interviewed, about my experience of the show and my experience of Autism. As I’ve said, I’m still making sense of how Autism fits into my identity so that was a bit nerve-wracking, but apart from my constant fear that I’m embarrassing myself, it went okay. And it felt positive – and empowering – to talk about the way I experience the world.
Another thing that really helped was having people I knew with me. I had Richard – my cowriter, guitar player, friend, and general partner in crime – there as he was playing guitar for me but almost everyone had a family member there too and that was really nice. Again, I can cope with being by myself but having people there who know me, who know my anxieties and how to handle them, made the day much more manageable and enjoyable.
The sound check had been well organised so most of us were done by lunchtime. I ran out to do a few things and then had a couple of hours to chill and gather my energy. I definitely needed that. And then, all of sudden, it was time to get back to the theatre, take photos, and go to the green room.
I missed a lot of the first half because I had to be in the green room in preparation for getting on stage for my performance and, although I was sad to miss the performances, I got to hang out with some seriously lovely people that I hope to stay friends with. Obviously being autistic doesn’t automatically make all autistic people compatible friends but there is something pretty magical about meeting people who understand parts of you that others just don’t, naturally and without having to try (I want to write something more in-depth about autistic friends vs. non-autistic friends because I think there’s space for an interesting debate about whether it matters or not, but I did just want to point out the special-ness of having a natural connection with someone that doesn’t require either person to be anything but who they are). We laughed a lot, shared photos of our pets, and sang the Friends theme tune. As much as I love performing, I think that may be my favourite part of the experience!
When it came my turn to perform, we had a technical malfunction: the microphone didn’t work. That’s always a fun way to start a performance… It happens; it was fine. In all seriousness: I’m not fazed by performing anymore. I get nervous and restless before a show but I’ve done it enough that it doesn’t really impact my functioning or my ability to perform; I can be anxious and still handle anything thrown at me (such as equipment failure…) without falling apart. We switched out the microphone and started again. All good. The performance was so much fun (even though ‘Invisible’ is a sad song) and it was really special to play for an audience that was so genuinely supportive of the performers. If you’re reading this and you were there, you guys were wonderful! I also got to mention this blog before leaving the stage, which was cool.
In the interval, something really special happened. A number of people came up to me and told me how ‘Invisible,’ resonated with them or how they wanted to find my blog because they thought it would help someone they knew. The idea that something I’ve done – little old me – could have an impact on someone is so incredible and magical and special to me. All I want to do is create things and help people, and create things that help people. So those interactions are amazing to me. Does that make sense?
It was a really, really special show and there were some amazing performers. I’m so grateful to have had the opportunity to be a part of it. I’m still struggling with my words, as I have been for a while now, but thank you to everyone involved and everyone who came to and supported the show. It means the world to me and I know it means the world to everyone else who performed.
Posted on June 16, 2018
So this week’s adventure was having one of my wisdom teeth removed. This has been a long time coming and it’s been bothering me for almost a year but apparently it wasn’t easily accessible or something else dentist-y. So we waited. But, at my last appointment, it was deemed removable and here we are.
If you’ve read my post about seeing a specialist dentist, then you’ll understand my fears around dental work. Seeing the specialist dentist has been a lifesaver and one of the best, most helpful things to come out of getting my Autism diagnosis. And with the help of the wonderfully kind and patient staff, I finally managed to have what would probably be considered a normal check up a few weeks ago. That was a huge milestone. And so, not wanting to undo all that progress, I was scheduled to have my wisdom tooth (and a filling) done under general anaesthetic.
On Thursday of this week, I got up super early and headed to the hospital. It was actually a private hospital so everything was very smart and efficient and the whole thing was over very quickly, although I was under for three hours rather than the originally planned one. I woke up feeling remarkably okay, a bit sore but otherwise fine. After my experience with Quetiapine, waking up from a general anaesthetic was like waking up from a nap and the pain in my face wasn’t too bad. In fact, I was bothered more by the headache I’d woken up with, which I’m pretty sure was a side effect of coming off Venlafaxine (I’ve been having almost migraine level headaches a lot lately – but more on that in another post). So it wasn’t long before I was discharged and out of there.
A couple of days on and I’m not feeling great. I’m fine but it’s still painful enough that I can’t really do anything other than sleep. So I’m sleeping a lot, taking painkillers, and trying not to stress myself out. The weirdest thing has been the way my lips have been twitching ever since I woke up from the anaesthetic (kind of like when you have a jumping nerve in your eyelid – really annoying, right?). This is listed as one of the side effects in the paperwork so while I’m not panicking, it’s pretty unnerving. I’ll be relieved when that wears off – apparently it shouldn’t last more than a few weeks, although I’m obviously hoping it will be less than that.
Comparative to my last dentistry-under-general-anaesthetic experience, this one has been considerably better. The worst part last time was that they accidentally split my lip in the corner of my mouth so every time I opened my mouth for the next week or so, the cut reopened, which was very unpleasant. My Mum remembered to bring that up when we spoke to them beforehand and so they slathered me with Vaseline throughout the procedure. It was pretty gross afterwards but I’m very grateful that they did it; I’m really glad that I didn’t have to go through that again.
I’m sorry if this isn’t the most articulate blog post I’ve written. My brain has been feeling fairly scrambled recently, after all the medication changes and the general anaesthetic, and getting my words to flow has been a struggle. Hopefully that will pass soon.
Hey! I’m Lauren Alex Hooper. Welcome to my little blog! I write about living with Autism Spectrum Disorder, as well as a number of mental health issues. I’m also a singer-songwriter so I’ll probably write a bit about that too.
My first single, ‘Invisible,’ is now available on iTunes and Spotify, with all proceeds going to Young Minds.