Posted on April 24, 2018
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.
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.
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.
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.
Posted on April 14, 2018
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
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
Posted on April 3, 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:
Posted on April 1, 2018
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.
Posted on March 31, 2018
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!
Posted on March 30, 2018
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.