“Is Autism A Gift?” (At New Scientist Live)

A while back, my brother told me about an upcoming talk called ‘Is Autism A Gift?’ Naturally, I was curious. And slightly sceptical. For me, Autism has been one struggle after another but I’m aware that that is likely due to the late diagnosis rather than the actual Autism. But who knows. So I was really intrigued as to what the talk would be like.

The talk was part of New Scientist Live, which is a huge event – a festival, really – all about “ideas and discoveries for everyone curious about science and why it matters.” I couldn’t describe it better than they do. It’s full of stalls, interactive experiences, and stages for talks on all different subjects. Had I not had previous engagements on the other three days of it, I would’ve loved to stay longer and explore more. I was almost giddy with all the potential for learning.

The speaker was Dr Anna Remington, the director of UCL’s Centre for Research in Autism and Education and a leading authority in the area of superior abilities in Autism. And she had me from the beginning: she asked how many people were autistic or had a personal connection to Autism, almost the entire audience put their hands up, and she said, “I personally feel that you are the experts.” She was warm and enthusiastic, the perfect combination of fascinated and respectful. I liked her straight away.

She started off with a brief outline of Autism, of the social aspects (struggling with non-literal language, eye contact, managing relationships) and the non-social aspects (the need for routine, areas of intense interest, sensory sensitivities). She also talked about the language around it, about using ‘autistic people’ rather than ‘someone with Autism,’ because so many people feels that it’s so intrinsic to their identity. She quoted someone she’d worked with: “You can’t separate the autism from me. It’s not something I carry around in a bag with me, it’s something that’s absolutely part of my personality and identity.”

She said that so many talks are about the difficulties of Autism but that she wanted to talk about some of the positives, not the savants but the areas where autistic people are shown to excel. She walked us through some studies – some visual tasks and some auditory, done with both children and adults – and showed us how the groups with autistic people did significantly better.

She introduced the idea of ‘perceptual capacity’: “The amount that we can process at any given time is known as our perceptual capacity. Everybody has a slightly different perceptual capacity and whether we process something depends on whether our capacity is full up or if there’s still room left over… Now the crucial thing is that we have to assign our whole capacity at any given time. You can’t assign just part of it. So, if the task that you’re doing doesn’t fill up the whole of your perceptual capacity, then anything that’s left over will automatically process something irrelevant around you.”

I found this whole concept fascinating. This is the idea behind why people listen to music while working or doodle while talking on the phone, filling in that left over capacity with information that doesn’t interfere with what you’re trying to do. I have always had stuff playing in the background (audiobooks, movies, TV shows – not music because I get distracted by thinking about the mechanics of the song and of the lyrics) and was always told that I couldn’t possibly do whatever I was doing well with that much ‘distraction.’ So it was very satisfying to know that I’d been right all along. If you want to know more about this, this article is very helpful.

She finished with why this research, why these findings, matter and how they can be applied in education and employment to improve the experience and opportunities for autistic people. The research is really exciting and I would love to be involved in some way; as I mentioned in my post about taking part in Autism research studies (here), there’s something really empowering about it, about feeling part of change. I spoke to her about it after the talk and she was absolutely lovely.

My one negative about it all was the level of background noise, this constant drone of indistinguishable voices. It made it difficult to hear the talk and it’s one of the things that I’ve found really drains my energy. But, although it completely wore me out, it was so worth it. It was such a positive experience and I’m looking forward to seeing where this research leads.

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Autism’s Got Talent

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.

Moving House When You’re Autistic

So I just moved house. It was not fun. I am going to write about it in more detail – I think the experience might be useful, maybe for someone trying to understand how change can affect a person with Autism – but I’m not ready to do that yet. It was really difficult and I’m still pretty emotional about the whole thing. Change is notoriously hard for people with Autism but I think the permanence of a change like moving house is particularly difficult. I definitely learned some lessons during the process so I thought I’d share them.

Some context before we begin: Not only were my family moving, we were separating into different houses, which was something I hadn’t been expecting. That was a real shock to me and made the whole thing even more difficult. But we’re still close and live close enough that we still see each other as much as before, which I’m really grateful for. Now I live with my Mum; I’m not ready to move out.

Right, here we go.


TIPS

Prepare for emotions, yours and others – First, however you feel is okay. It’s a big deal. Whether you feel everything or nothing, it will take time to work that out. And just when you think you’ve dealt with all of that, it’s time to move and it all comes back. There were lots of tears on the day of the move, as well as the few days after. It’s emotional and stressful and exhausting: the perfect mix for someone to get upset. I think the only thing you can do is be gentle with yourself and each other and give people space when they need it.

Build in as much time as possible – Moving house is exhausting and emotional. And packing at the last minute just makes it worse. Giving yourself time allows you to be careful and methodical and it means you can take breaks if it gets too much.

Label the boxes – The destined room is not enough. By the time you’ve packed everything you own and transported it to your new home, you’ll have no idea where anything is. And every time you need anything, you’ll spend at least twenty minutes digging through all the boxes in order to find it. It will drive you up the wall.

Pack a suitcase – You know me: preparation, preparation, preparation. Make sure you have a bag of things you’re going to need for at least the first week. You might think that you can get yourself sorted in a couple of days but chances are you can’t and you really don’t want to find yourself out of things like clean clothes and make up remover. You don’t need that on top of the stress of moving. Also, remember to check the weather forecast before packing, just in case you find yourself caught unawares by a heat wave with only jumpers to wear like I did.

Try to create a safe space for yourself – Moving house is messy and if you’re anything like me, being surrounded by clutter for extended periods of time makes me feel very claustrophobic and panicked. So, both before moving out and after moving in, I tried to keep one area calm and somewhat neat to give me a space to decompress and recharge in. I wasn’t always successful at keeping it tidy but for the most part, it helped.

Set a reminder to put all your food in the fridge – The last thing you need is all your food going off and with a million things to remember, you’ll most likely forget something. Let that be something else.


QUESTIONS TO THINK ABOUT

How much help do you need?

Depending on your capabilities, you may need to enlist some help to move everything, whether that’s professional movers or friends and family or both. You really don’t want to get halfway through moving day and be unable to keep going so make sure to think carefully about what you need and ask for that help well in advance.

Do you need to be there on moving day?

This obviously depends on whether you’re moving with your family or by yourself: the demands on you will be different. In my case, my family knew how difficult the whole experience had been and so suggested going to see a friend while the removal people did their thing. They thought that the empty house would upset me but I felt like I needed to be there; it helped me say goodbye.

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Do you need a clean slate or do you need to keep things familiar?

As already mentioned, change is often hard for autistic people so you might feel the need to keep things as similar as possible, such as furniture and when decorating. But on the flip side, many people with Autism feel emotions very strongly so a change might actually be the less overwhelming option. It wouldn’t be healthy to be constantly reminded of an upsetting event.

Do you need closure and if so, how can you get it?

I definitely needed to say a real goodbye. I’d lived in that house for fifteen years; I felt safe there and there are a lot of memories associated with it. For a long time, it felt impossible to leave. So, once I could consider it, I thought a lot about what would help me leave, knowing that I wouldn’t be coming back. So, on the last day, we took some pictures of me in my room and then I put a letter I’d written for a future resident under a loose floorboard. I can’t tell you why or how but that did help a bit.

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ADVICE FOR FRIENDS AND FAMILY

If you’re telling an autistic person that you have to move, be clear. Give them all the information. Especially when there’s so much emotion, it can be hard to process what’s going on so anything that isn’t explicitly stated may get lost.

Give them as much warning as possible. Something like this is really difficult to process – there are so many emotions involved – and it came take time to absorb and make sense of.


So I think that’s everything. I hope this has been interesting and helpful. One last thing to add: I found this article recently that is more relevant to someone moving out of their family home and thought it was definitely worth including here.

Goin’ Back To Nashville, Thinkin’ ‘Bout The Whole Thing

Ten points if you understand that reference.

As many of you know, I was in Nashville from 1st April to 11th April so here is a post all about that: the travel, the being away from home, some of the things I did, and how I felt about it all. A big part of this is that I do just want to write down some of my thoughts about it but I also think that documenting these experiences as a person with Autism, as a person with mental illness, could be helpful, especially when there is so little information and testimony about living with these issues.

The flight out was smooth. In the literal sense, anyway. But about an hour before we arrived in Charlotte, North Carolina, I started sneezing. I didn’t think much of it until we were walking through the airport and it still hadn’t stopped. And then my nose started to run (this is gross and probably too much information, but it was like water was just leaking out of my nose) and all the sniffing I was doing to try and stop it gradually gave me a terrible headache. So that was a struggle. And it just wouldn’t stop. By the time we arrived in Nashville several hours later, I had the beginnings of a migraine and was practically useless. Fortunately, I was travelling with my Mum and one of my best friends, Richard (who is also my writing partner), so I could hand over responsibility and focus on staying upright. We got to our accommodation and I fell asleep as soon as I sat down (getting back up and walking to the bed was the most asleep I’ve ever been while awake and, no joke, I laughed hysterically until I fell asleep). The jetlag got me good – I was so tired that I fell asleep in the middle of the afternoon every single day – and I still hadn’t gotten myself in sync by the time we were flying home.

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Before I get on to the rest of the trip, I have to say that none of it would have been possible if my Mum hadn’t come with me. This was my third trip to the US and she has been with me each time, sometimes working and sometimes taking a holiday – she freaking deserves one with how hard she works, at everything – and I could not do it without her. This probably deserves it’s own post but in short: she helps me keep my anxiety under control, helps me process everything that’s happening, removes the stress around food by either being there to catch me when I fail at it or completely assuming responsibility for it… She is the certainty I need when every other thing around me is uncertain. All of these things make it possible for me to be functional, let alone make the most out of the trip and the opportunities I’m presented with. She is a complete superstar and I’m so, so grateful.

Another thing that I think is important to mention is how much I struggle with food when I travel. I have huge, huge anxiety around food (see my recent post) and there aren’t many things I can manage. I remember thinking, before my first trip, that there would finally be things I could eat but my perception of the food was wrong; I was convinced I’d gain loads of weight but I actually lost more than half a stone. Since then, both me and my Mum have been more prepared: we travel with things like rice cakes (one of my staples), shop on the first day, and never rely on restaurants or venues. So, this time, we made a huge thing of Stir Fry at the beginning of the week and I basically ate that all week. I know that some people would find that boring but for me, it was comforting to know that there was a meal a day that I wouldn’t have to worry about. Sometimes that’s all I can manage so I need to know that it’s something I can eat. Again, a major shout out to my Mum for supporting me with that. And to Pancake Pantry for getting me excited about food.

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The reason for going at this time of year is the Tin Pan South songwriting festival. Over five days, there are a hundred songwriters’ rounds where all of these incredible songwriters play their songs – some famous, some never released – and tell the stories that inspired them. As a songwriter, it’s the most amazing and motivating experience. As you guys probably know from my playlist post, I saw so many people that I was so excited by but I’m not sure anyone is interested in that, given that this is primarily a mental health blog. Let me know if you would be interested in that. But having said that, I can’t not mention some of them: Natalie Hemby (one of my all time favourite songwriters) was incredible and hilarious; Alyssa Micaela and Emily Shackelton were wonderful; Abby Anderson’s ‘History’ was one of my favourite songs of the festival; the show with Jeff Cohen, Kara DioGuardi, Jamie Hartman, and Ingrid Andress (one of my favourite finds of the week) was mind blowing and definitely a highlight; and Nikita Karmen was another great discovery. All of the shows were fantastic though and I felt so lucky to be there. I felt (and do still although my mental health has crashed since) so, so inspired and can’t wait to write new songs having learned so much.

And on that note, I got to hang out and write songs with one of my favourite people in Nashville. Her name is Caylan and we met during my first trip to Nashville in 2016. We wrote one of my favourite and most personal songs several days later. She is such a beautiful songwriter and again, we wrote some really cool songs and it was so, so nice to see her again. I also did some writing with Richard, which is one of my favourite things to do.

The biggest, most exciting part of my trip was playing a Song Suffragettes round. I’ve been following them on social media and watching their shows on Periscope for years now and I have always been so inspired by their mission to promote these incredible up and coming young women in country music. I’ve always done my best to see the shows in person when in Nashville and it has truly been a dream of mine to play at one of their rounds. And on this trip, that dream came true. It was nerve wracking but it was one of the most positive experiences I’ve ever had and definitely so in the last year: everyone behind the show was so lovely and the other girls were so sweet and so welcoming. My performances weren’t perfect but I’m still proud of them and I felt so, so honoured to be there. It was inspiring and motivating and so special. We finished the show with a cover of ‘Delicate’ by Taylor Swift, which we’d put together in the back room before going on stage and, again, that was really fun. Oh, and the video of that is now on YouTube!

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After the show, we went out to the lobby to meet and talk to anyone who wanted to talk. That turned out to be a real highlight. I hadn’t expected anyone to want to say more than hello since it was my first time playing and no one would’ve known me before the show but so many people came up to me and the conversations we had were and are very special to me. Two of the three songs I played are incredibly personal, including one about my experiences with trying to get help with my mental health, and these are the songs that seem to really connect with people. I’ve had people come up to me, tell me what it meant to them to hear these songs, and share some amazingly personal stories. It blows my mind that a little song that I wrote in my friend’s front room on a Thursday afternoon has made people feel safe enough to share these really important things with me. I’m so honoured. That whole night was so special to me. A massive thank you again to everyone behind Song Suffragettes for all you guys do and thank you, thank you, thank you for inviting me to play.

The last couple of days were a bit of a blur after that but my last activity in Nashville was a memorable one. We went to The Candle Bar to make our own candles, something I’d seen on Instagram and really wanted to do. I really, really struggle with candles because of how sensitive to smells I am so I was excited to find out whether I could create a candle that I could not only tolerate but also enjoy. Because you’re pouring out the fragrance and the wax, you are in control of how strong the candle will smell; obviously you want to be able to smell it but this made it possible to add slightly less of the fragrance so that it won’t be overwhelming. It was a really fun experience, simple and chilled and interesting. I had commitment issues over which container to use and had to change once I’d chosen the fragrance because the colour of it didn’t match how it smelled, but choosing the fragrance was easy: there were only two that I liked. I ended up going for the pink pepper and grapefruit because, as a smell, it had no sharp edges, if that makes sense. There was nothing jarring about it. Since I’ve been home, I’ve only lit it once but I really like it. It’s subtle, which is perfect for me, but I can still smell it and it does actually smell like the fragrance I chose. So I’m really happy with it and would definitely recommend the experience.

And then it was time to go home. Usually I dread going home but after the roller coaster of emotions that I went through on this trip and having the kittens waiting for me, I was ready to go. But it was still hard. I’ve jokingly compared my love for Nashville to a long distance relationship but fortunately, I know it isn’t going anywhere anytime soon. I’ll be back and it will be there, waiting for me. The plane ride home went fine, although we took extra precautions and I wore a mask for most of it. I felt ridiculous but I kept reminding myself that I was trying to avoid more illness and discomfort, that I am allowed to take care of myself.

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Before I sign off, there are a couple of other things that I wanted to mention and the first one is about the emotions throughout the trip. The first half of the ten days was really hard: I was overwhelmed by anxiety and struggling to stay ahead of a particularly bad episode of Depression, my self doubt was paralyzing, and I just had this overwhelming longing to go home where I felt safe and less like I was going to fall apart at any second. It was horrible, but fortunately it did pass (although it’s come back in full force since I’ve been back) and I was able to enjoy the rest of the trip apart from some anxiety (which is totally normal – I can’t remember the last time I wasn’t anxious, and very anxious at that). The lows were very low and the highs were very high, as usual. And with everything on top of that, I was completely and utterly exhausted. So it was definitely a rollercoaster.

The other thing I want to say is that it was vital that I had some time out from it all. I’m going to write a ‘tips for travelling when you’re autistic’ post but I also want to include it here. With all the emotions, the anxiety, the walking and standing, etc, I had to have some recovery time. Apart from the times where I just fell asleep on the sofa, we would watch TV together (shout out to Episodes and Queer Eye – highly recommend both). I tried to ignore the little voice in my head that kept telling me I was wasting the trip by doing that but I tried to remember that I was doing it to ensure that I could make the most of the trip. It’s hard to see it that way sometimes. But without rest, I wouldn’t have been able to go out every night – sometimes to two shows – and I wouldn’t have been able to write the best songs I could and I wouldn’t have been able to enjoy the experience. So yes, if you need to take breaks, take breaks.

And that’s it for this post. I hope it was interesting, that there were a few helpful things in here. I have lots of blog posts on the go or in the planning stages so I’ll talk to you all soon!

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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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