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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Nashville Playlist

So, as you guys know, I’ve been in Nashville and I just got back on Thursday. I’m working on a post all about the trip – partly because I just really want to write about it and partly because I think there is some stuff in there that could be useful to others – but that’s taking a while so, in the mean time, here is a little list of songs that I listened to while I was away, one for each day. Since I was there for the Tin Pan South songwriting festival, many of these songs haven’t been released yet or were performed by the original writers rather than the person that usually performs them. So, for the songwriters out there, I hope this will be interesting. Also bear in mind that, especially while the festival was going on, I was hearing between twenty and fifty songs a night so a lot of thinking went into these choices…


SUNDAY – ‘Love Is A Wild Thing’ by Kacey Musgraves (Written by Kacey Musgraves, Ian Fitchuk, and Daniel Tashian)

I hadn’t had a chance to listen to Kacey’s new album until I got on the plane and I just fell in love with it. She’d performed this one at Country2Country and I was so excited to hear it again. It did not disappoint and it’s one of my favourites of the album.

Even if you lose it, it will find you

There’s no way to stop it so don’t try to

Running like a river, trying to find the ocean

Flowers in the concrete

Climbing over fences, blooming in the shadows

Places that you can’t see

Coming through the melody when the night bird sings

Love is a wild thing


MONDAY – ‘Give It All Back’ by Jordyn Shellhart

I first heard Jordyn at a Song Suffragettes show (an organisation aimed at showcasing new female songwriters in country music) and I instantly fell in love with this song, with it’s energy, with it’s golden hope. You know when you’re listening to a song and it feels like your lungs are expanding, your head tilts up, and your whole body gets lighter? Yeah, I had that with this song. And then I was lucky enough to hear it in a Tin Pan South round later in the week.

If we got all we ever wanted

But it cost us all we ever had

Pinkie swear, baby, let’s shake on it

If it comes to that,

We’ll give it all back


TUESDAY – ‘Fight Like A Girl’ by Kalie Shorr (Written by Kalie Shorr, Lena Stone, and Hailey Steele)

This song has been out for a few years now but hearing it live is just another thing altogether and, of course, Kalie performed it when I saw her play at Song Suffragettes. I sort of forget how much I love it and then it just smacks me in the face and leaves me breathless. It’s such an anthem and I particularly love the lines about her Mum because I feel exactly the same way.

I’m little but I’m loud

Just wanna make my mama proud

And you can tell without a doubt that I’m her daughter

She raised me to believe

That I can be anything

So when you push me, I’ll just push back harder


WEDNESDAY – ‘Rainbow’ by Kacey Musgraves (Written by Kacey Musgraves, Natalie Hemby, and Shane McAnally)

I freaking love this song and have loved it since Kacey started performing it way back when. I was really disappointed when it wasn’t on her second album and absolutely ecstatic when it was on her third. And then Natalie Hemby performed it at Tin Pan South and I loved it even more, especially when she talked about the writing of it: it’s about how hard it is to recover from a traumatic experience or period in your life and how, even once you’ve come through it, it can be hard to recognise that. I really relate to that.

‘Cause the sky has finally opened, the rain and wind stopped blowin’

But you’re stuck out in the same old storm again

Hold tight to your umbrella, oh darlin’, I’m just tryin’ to tell you

That there’s always been a rainbow hangin’ over your head


THURSDAY – ‘Doin’ Fine’ by Lauren Alaina (Written by Lauren Alaina, Emily Shackelton, and Busbee)

This was a hard pick (honorary mention to ‘Between Me and a Bar’ by Alyssa Micaela because it’s freaking awesome and was a very, very close second to this song) but I connected to this song so strongly that it had to be this one. Emily Shackelton performed it during a Tin Pan South round and I fell in love with it straight away. This is my kind of anthem: not rainbows or confetti or fairy tales, but the moment when you realise you just might be okay after a really long struggle.

I’m doing fine enough to know that everyone’s a little broken

Fine enough to learn that hearts are best when they’re wide open

I still got fear inside of me

I’m not okay but I’m gonna be

Alright

For the first time in a long time I’m doing fine

I’m doing fine


FRIDAY – ‘History’ by Abby Anderson

Again, this one was a really, really difficult choice. Shout out to Ingrid Andress because all of her songs were amazing, especially ‘Ladylike.’ But, like the last one, I related to this song so powerfully that I had to talk about it here. As far as I can tell, she only wrote it recently so I’m not sure if it’s available anywhere yet or even if it will be. I really hope it will. It’s the song I’ve been trying to write my whole life.

It may be something that nobody sees

Something that we carry that will always be

If our paths don’t cross and we never speak

And the world moves on, believe you’ll be

A part of me, part of me

‘Cause we have history, history


SATURDAY – ‘First Last Name’ by Madison Kozak

I’ll stop saying this now but this was another one that I really struggled to narrow down. I was absolutely sure that I would choose a Nikita Karmen song because I was absolutely blown away by her in the first round (seriously, go and check her out) but then I heard this song and I couldn’t not write about it. Songs about fathers speak to me on a very specific level and this one just made me cry because it made me think about what our relationship might’ve been like. It’s a beautiful song.

He’s the son of a salesman

Short glass old fashioned

‘How’s your car been running, baby?

Call your mama when you get home safely.’

My hall of fame

He’s never missed a game

My first last name


SUNDAY – ‘Delicate’ by Taylor Swift (Written by Taylor Swift, Max Martin, and Shellback)

I listened to this song a lot on Sunday because I was performing at the Song Suffragettes round the next night and at the end of each show, the girls perform a surprise cover to finish. I was out of my mind excited to play that show so I listened to it on repeat to make sure I really knew it. Anyone who knows me knows that I love Taylor Swift. It wasn’t one of my favourites on the new album but the experience of learning it and performing it in that setting has made me absolutely love it.

Third floor on the west side, me and you

Handsome, you’re a mansion with a view

Do the girls back home touch you like I do?

Long night with you hands up in my hair

Echoes of your footsteps on the stairs

Stay here, honey, I don’t wanna share


MONDAY – ‘Brand New Heart’ by Lucy Scholl

I first heard this song last year when I saw Lucy perform at a Song Suffragettes round and I instantly fell in love with it. The chorus just spoke to me so clearly. I think it’s much better than the ‘I’m grateful you broke my heart because it made me a better person’ songs because, while it acknowledges the other person’s part, it’s about how she made that new heart, that new person. She hadn’t planned to play it at the round we were both performing in but I asked and she very kindly obliged.

Never thought I’d be so proud of these scars

Showin’ ‘em off like they’re a work of art

I took all the pieces that you broke apart

And I made a brand, brand new heart


TUESDAY – ‘Let Me Be’ by Savannah Keyes

Savannah played this song during the Song Suffragettes round and it’s been on my mind ever since. She talked about how she’d been out with friends and how they’d seen a shirt in a shop window, which had the words ‘eat less’ emblazoned on it. That example of how much pressure is put on girls inspired this song, which I just loved, as did my Mum. It was very powerful.

Let me be daring

Let me be kind and caring

A dreamer with a flower in her hair and

Let me be young and free

Let me be sweeter

Let me be an innocence keeper

A follow-my-heart believer

Let me be seventeen

Let me be


WEDNESDAY – ‘Oh What A World’ by Kacey Musgraves (Written by Kacey Musgraves, Ian Fitchuk, and Daniel Tashian)

And in a strange full circle of sorts, I ended up listening to Kacey Musgraves on the flight home. After the ten days I’d just had, ‘Oh What A World’ feels like a pretty appropriate closing track.

Oh, what a world, I don’t wanna leave

All kinds of magic all around us, it’s hard to believe

Thank God it’s not too good to be true

Oh, what a world, and then there is you

Autism Awareness Day 2018

Happy Autism Awareness Day!

Having been posting all week, I’m not sure I have anything new or exciting to say today. Plus I’m really jet lagged and struggling after an allergic-like reaction that I had on the flight to Nashville yesterday. I’m not sure how many words I have in me  until I’ve had at least another night’s sleep. But I wanted to post with all the links to those posts and throw in my two cents (I’m in America, geddit…) to the discussions going on all over social media today.

Remember that, regardless of the things you find difficult or are unable to do, you are important and what you do matters. We may not always live up to the standards imposed on us and we may not always be as good as we want to be but that does not mean that what we can manage doesn’t matter, whether that’s exam results, exercising, or writing songs. How you do something, with your unique emotions, thoughts, and experiences, will be entirely different to how any other person would do it. That’s special. You’re special.

I’ll see you all soon. And here are all the posts from this week, all aimed at greater understanding around Autism:

World Autism Awareness Week 2018

The Consequences of an Autism Diagnosis

Living With The Volume Up Loud

Learn With Me

Introducing My Autistic Self

Introducing My Mum

When Anxiety Is The Only Thing On The Menu

When Anxiety Is The Only Thing On The Menu

I know I touched on issues with food already this week but I thought I’d go into a little more detail so those of you who don’t experience this difficulty can get a glimpse into what it’s like. Food is a massive problem for me; it’s a daily cause of stress. Where am I going to be? Will there be food I can eat? If not, can I bring my own food? Can I get away with not eating or will people notice and point it out? It’s a constant loop and that is exhausting.

As I said in a recent post, I’m incredibly sensitive to the flavour of food; add even the smallest sprinkling of pepper to a meal and I can’t eat it. It overwhelms me and I just cannot eat it. Forget spicy food entirely. So I can only eat the simplest things: plain rice or pasta, unadorned chicken or fish, and so on. I practically live on fruit and vegetables. When there are lots of different flavours, I get overloaded. I can’t describe it better than I did in my sensory sensitivity post: “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.”

I’m also very sensitive to texture; there are very few things that don’t trigger my gag reflex. I’m sure all of you have experienced that at one time or another so you can imagine how desperate I am to avoid it. I remember a particularly bad experience with tofu; I’m actually shuddering just thinking about it. I have a similar problem with wet foods touching dry foods. It triggers the same response. So while my family – who are all fairly adventurous when it comes to food, at least from my point of view – flip through a library of cookbooks, I eat simple meals with ingredients that I can separate and I eat them over and over again.

Honestly, I don’t mind that. It’s safe. It’s comforting. It’s the pressure to eat ‘like a normal person’ that’s stressful. Going to restaurants and eating in public is a major anxiety: it’s very rare that there’s something on the menu that I feel able to eat and asking for something simple feels impossible. I find asking for anything difficult and drawing attention to this issue is something I try to avoid if at all possible.

As a child, I was labelled a picky eater and strongly encouraged to try different food. I know that my family and friends were just trying to help me: they were trying to prepare me for a world that would expect me to eat complicated food. But instead of it getting easier, it got harder. So eventually we reached this uneasy stalemate. But getting a diagnosis made a massive difference: it gave people an explanation, made them realise that it was something I couldn’t help. It took the pressure off in a big way. But as important as that is, it hasn’t fixed my problems with food. And as much as I struggle with it physically and struggle to get the right nutrition, it also has a big impact on my mental health.

People make assumptions when they hear how little I can eat. They think I’m being picky or deliberately difficult and see me as an inconvenience. I know that it’s not my fault and that it’s a valid reason to struggle but I find it incredibly embarrassing that I can’t eat like everyone else. I feel like it keeps me from really becoming an adult, especially when so much socialising revolves around the consumption of food and drink. It feels like a weakness; it’s something I’m ashamed of, which definitely feeds into both my body image issues and my depression, as well as my anxiety. When I get really low, as in dangerously low, food becomes even harder and I just lose the will to eat all together.

I vividly remember being about ten years old and reading a magazine article about a girl who had to have intravenous nutrition for medical reasons and I found myself wishing I could have the same, wishing I could not eat because it would be so much easier. And I still relate to that. I would give anything to be in control of this, rather than it have control of me. I wish I could choose what to eat, rather than navigate around the things I can’t. I wish I could eat according to my beliefs instead of having to worry about whether I’m getting enough protein or calcium or whatever (I would love to be a vegan, or even a vegetarian, and often feel guilty that I’m not but health wise, it’s ill advised when there’s already so little that I can eat). I wish I didn’t have to be afraid of blowing a sensory fuse, of getting completely overloaded, which can trigger a meltdown. I wish I could enjoy food. But I can’t and I’m scared I never will.

Introducing my Mum

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

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

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

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

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

 

Introducing My Autistic Self

Someone asked me the other day how I told people that I’d been diagnosed as autistic and I realised that I’ve never told that story on here. So I thought I’d post it as part of Autism Awareness Week. Maybe it will be helpful to some of you.

I was between my first and second years at university and I consider myself very lucky that I was diagnosed during the summer holiday. It gave me time to really process the news and figure out how I felt about it, as well as decide who I wanted to tell and how I wanted to tell them. I could absolutely set the pace and break it down into smaller tasks. It’s a big thing to tell people so I wanted to find the best way to do it.

I decided that the best way for me to tell people was to send a Facebook message. There wasn’t going to be an opportunity to tell everyone at once and I’ve always felt more comfortable sharing important news through writing. It gives me more time to think about what I want to say and I can always walk away and come back to it if it isn’t coming across the way I want it to. It also means that I don’t have to worry about processing other people’s reactions; I can think about one thing at a time.

This is what I ended up with:

“Hey guys, I just wanted to let you know of a change in my life without making a big announcement. Over the summer, I was diagnosed with Autism Spectrum Disorder (still commonly referred to as Asperger’s). Apparently it’s commonly missed in girls and young women as it presents similarly to Depression and Anxiety, which, as many of you know, I’ve struggled with for a long time. But this is a good thing because I’m finally getting the support that I need/have needed to manage it, the social anxiety, general anxiety, etc. Overall, nothing’s really changed, other than the fact that this thing I’ve been struggling with has a name now but I wanted you guys to know since it does affect my life. If you want to ask me anything, please do J Look forward to seeing you all soon.”

The second job was to choose who I wanted to tell. Within my family, it hadn’t been a secret that we were looking into an Autism diagnosis and so a lot of them already knew by this point. So that left friends and acquaintances. I wanted my good friends to know and I also wanted to tell the people that, because of university, I would be spending a lot of time with. It was such a big thing that I didn’t want to feel like I had to keep it a secret. I also didn’t want to accidentally spring it on anyone. I went down the Facebook list and tried to add everyone I thought fitted into those categories. I’m sure there are people I missed but I did my best.

I hit send and then did my best to forget about it for the rest of the evening. Just sending the message was a lot to process. So I had some quiet time with my family, watching TV and having dinner. And only then, a few hours later, did I check the response the message was getting. These were all lovely people so I wasn’t expecting a negative response but I was a bit overwhelmed by how positive the replies were. I unashamedly admit that there were several messages that just about had me in tears. I don’t think it’s fair to post anyone’s actual words but I had people thanking me for sharing the news with them, telling me I was brave for doing so, saying that they were glad I was getting support and that they loved me. Those messages still mean so much to me.

Of course, there have been occasions where I’ve had to tell people face to face but the positive response really boosted my confidence. So I hold up my head and say the words like they’re a shield to protect me. I don’t always feel as self-assured as I appear to when I tell people but I have found that it helps my confidence to act like I do. I’m not generally a fan of the ‘fake it ‘til you make it’ approach – I usually find it invalidating – but in this case it has helped. Maybe I’m not faking it, maybe I’m using it as something that protects me rather than something that weakens me. I don’t know.

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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.