Finding HopeIntroducing my Mum
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!
Introducing My Autistic Self
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.
I’m Grateful
Posted on December 24, 2017
A while back, my social media feeds were flooded with posts about being grateful and appreciative and thankful. Yes, it was Thanksgiving. I live in the UK and I find it a bit of a weird experience seeing so much celebration and festivity in my online world and have none of that reflected in the world around me. But I do think it’s important to take the time to feel grateful for what I have and I always feel especially grateful at Christmas so I thought I’d write a short post about some of the things I’m grateful for, some big, some small, and some strange.
My family, my friends, my people – This year has been a particularly difficult year but if it’s taught me anything it’s how incredible the people in my life are. Time and time again, they’ve come through for me, supported me, and encouraged me and I couldn’t be more grateful. A few years ago, my relationships felt a bit all over the place (especially my friendships: old ones were separated by university and new ones were still tentative) but this year, I feel like I’ve fallen in love again with all the lovely people in my life, from the people I talk to online to my friends (both from university and from before) to my closest family. And I’m trying my best to make sure they know it.
My therapist – My god, I’m so grateful for my therapist. Not a day goes by that I don’t think about how lucky I am to have her. I can’t even put it into words. Having someone I can trust with anything and everything is incredible (although it’s very scary for me to feel so reliant on a person). I’ve told her things I never thought I’d tell anyone and she’s helped me through things I never thought I’d get through. I can’t thank her enough for all she does.
My animals – I’ve already written about my animals so I won’t ramble on too much but they deserve a mention here. They bring me such joy and help me so much with my depression and anxiety. I’m so, so grateful to have them in my life.
My final year at university – My first two years of uni were really, really hard. They were a real struggle. I learnt a lot and I met some great people but the bad stuff going on often overwhelmed the good stuff. But third year was a blast. I loved it. I had a great group, some great tutors, and I wrote some great songs. I also built some great friendships. I think the best way to describe it was that I was finally feeling in sync, with everyone else but also with myself. I was working on all the things I wanted to work on, I was working with some awesome people, and I was getting some really good responses. It felt so right. Leaving was really hard but having such a great last year means I look back on the whole experience positively even though there were some really hard times.
My health – My health is a struggle and it’s something I wrestle with daily but I am so grateful that it’s not worse. I don’t think it’s helpful to compare your health situation to others’ because someone else’s experience doesn’t mean you aren’t allowed to feel and struggle with your own. I also think it’s unhealthy to focus solely on the positive and repress your feelings about the negatives. But I do think that it’s important to keep a sense of perspective. I’m grateful for all the things in my body that do work. I’m grateful that I do have days where I can walk the dog, go out with my friends, and stay out late. I’m grateful that my mental functioning seems to be getting better. I’m grateful for how resilient my body is. I need to learn from that.
The benefits I receive – I want to write a more in depth post about benefits and the process of getting them because it really can’t be explained sufficiently within this post but I really wanted to include this because I am so very grateful to get the benefits I do. It’s something that just removes one layer of anxiety and that’s such a big deal. I’m also really grateful for the Christmas bonus. I haven’t had a Christmas where I’ve been on benefits so far and the extra £10 with the recent payment just made me so happy.
Clear skin – My Mum laughed when I told her that I was putting this on the list but I am so, so grateful that, for the majority of the time, I have clear skin. It was something I was so insecure about as a teenager. Looking back at the photos, it doesn’t look too bad but I remember so vividly how upset I’d get over it so I’m grateful for every day I look in the mirror and see clear skin. I don’t take it for granted.
Redbull – Redbull should sponsor me. Seriously. I’m actually drinking Redbull as I write this. I only discovered it recently (I’d had to avoid caffeine while taking my previous medication) and it’s been a very exciting find, especially while I’m struggling so much with low energy levels. It gives me such a boost; it makes me feel like a normal, functional human being, not like one who has to constantly assess her energy levels and emotional state. It’s like the fog of fatigue rolls back and I can actually feel all the other emotions, like excitement and joyfulness. I’m aware that I shouldn’t drink it too often but while I’m following every other avenue to improve my energy, it’s a really good back up plan for when there’s something I need to do.
Agents of Shield – Another one that isn’t life changing but oh my god, I look forward to every new episode. I love it. It’s definitely my favourite TV show. For a long time, I avoided everything superhero-related because it just made me miss my Dad but almost ten years on, it’s something that feels really special. I can imagine the conversations we’d have, the debates over how the storylines played out. I can almost hear his voice down the phone, talking me out of a panic attack by saying, “Think of Daisy. What would Daisy Johnson do?” It used to hurt but now that world makes me feel close to him. On a different note, I love it because I find watching it makes me feel empowered. It reminds me that, superpowers or not, doing good – being a hero – is about the choices you make. It’s a weekly reminder to try to do better and to be better. Plus Chloe Bennet (who plays Daisy) is just freaking awesome. The whole cast is.
Taylor Swift – Yes, I am grateful for Taylor Swift. People have made fun of me for liking Taylor Swift for as long as I’ve been a fan but I honestly do not care. She is a fantastic songwriter and I love her music. I’m grateful to have a new album this year but the thing I’m really, really grateful for is who she is as a person. Since announcing the new album, she’s met literally hundreds of people who’ve always wanted to meet her; she’s made hundreds of people’s dreams come true, not for financial gain, not for the publicity, but because her fans matter to her as much as she matters to her fans. How lovely is that? I think that’s amazing. I’m also grateful to her for using her platform to spread awareness about sexual assault, as I am grateful to every person who has done the same. We are not obligated to share our traumas; our only obligation is to ourselves and our healing. Sharing difficult experiences and opening yourself up to the opinions of others is so brave and should never be undervalued. Her level of fame makes any potential fall out worse but it also means she made a huge impact: the RAINN hotline saw a 35% increase in the number of calls they received after she won her trial. She has so much power to affect people’s lives and she strives for that impact to be a positive one. So yeah, I’m grateful for Taylor Swift.
I could keep going – there’s a lot I’m thankful for – but I’ll stop there. I’m wishing you all a safe, happy, and healthy Christmas and I’ll see you on the other side.
Finding Hope 