Finding HopeWhat Women With Autism Want You To Know
Posted on December 8, 2018
The other day, I was just browsing through YouTube (probably procrastinating something) when I came across this video.
“Autism is not a disease, it is a developmental disability. It’s about living our best possible lives with this condition.”
I am ridiculously excited that this video exists. Even a few years ago, when I was looking into Autism as an explanation for my struggles, I was still being told that women don’t have Autism or being dismissed because I didn’t fit into the stereotype for Autism (which has come from autistic boys and men). So the fact that this video even exists shows that some progress has been made. At this moment in time, it has just short of a million views. A million! That means that potentially a million people now have a better understanding of Autism in women. That’s completely amazing!
There’s so much good stuff in this video – you really should watch the whole thing. But here are some of main points and some quotes that stuck out to me:
1. Autism covers a wide spectrum.
- “Autism is an internal thing, not an external thing. No one looks autistic.”
- “Autism isn’t a linear spectrum of high or low. It’s a whole bunch of different traits that are on their own spectrums. It’s kind of a 3D, weird mess.”
- “Autism is simply a different way of thinking, seeing, and interacting with one’s world.”
2. We have emotions.
- “I would definitely disagree with the idea that we’re not emotional. I think we’re actually highly emotional. I think that we just… many times we don’t express it the way people expect… We’re feeling it. It’s there. But it just might not come out. And then, at other times, it might be overly expressed.”
- “We can’t filter them out because we feel them so strongly so we shut down as a way of processing all those emotions.”
3. Social interactions can be challenging.
- “It takes a lot of effort to appear [like anybody else, like someone not on the spectrum]. Like, it takes a lot of conscious awareness. Social skills are like a muscle for us.”
- “It’s very, very draining. Even with people that I care for and enjoy being around, I have to psych myself up to be around them.”
- “All the little things that everyone does unconsciously, autistic people do manually. So that adds up. What I’m doing with every part of my body, I am to some degree aware of and trying to do.”
4. Diagnoses can happen at any age.
- “A lot of women, women that I know who are autistic, are not diagnosed until their twenties, thirties, or even beyond. A large part of this is because the way that we diagnose Autism is by using criteria that were created by observing boys and Autism looks different in girls and women than it does in boys.”
- “I feel like, ‘okay, I know why I’m this way, I know why other people are the way they are, so I can bridge this gap.'”
5. The nuances of dating can be challenging… but we do have sex lives.
- “We just may need more support in order to learn how to make [relationships and sex] happen. We don’t naturally understand the nuances that are involved and there are a lot of nuances.”
- “People on the Autism spectrum, especially women, are more likely to experience sexual assault or some sort of violent incident than the neurotypical, non autistic population. We are very vulnerable. We definitely can be more trusting because we are very honest and upfront people so we don’t think that other people might not be so honest and might be trying to hurt us.”
- “One of the traits of Autism is not reading between the lines in social interactions and so much of dating and sexually is supposed to be indirect and subtle and that it’s inappropriate to talk about sex in a direct way, even when you’re teaching it as sex ed.”
- “No one is teaching the social aspects [of dating and sex]. And honestly, this is where autistic people are the canaries in the coal mine. Teaching the social aspects of sexuality would help everyone. Autistic people need it but it also benefits everyone.”
6. We have lots of different interests.
- “There is a stereotype that everyone with Autism is into science and math and stuff, like Rain Man. But a lot of people with Autism… women actually, especially… a lot of us are into the arts.”
- “In my experience, autistic girls are also just as obsessive autistic boys. They’re just obsessed with, you know, fantasy novels or their favourite band or whatever. Not planes, trains, and automobiles.”
7. Bullying sucks.
- “You know, it’s like somebody making fun of a blind person only in this case you’re blind socially.”
- “We all start from somewhere but that isn’t necessarily where we’re going to end up and you have to believe that there is going to be a future.”
- “There’s enough misfits in the world, like, people who got picked on. There’s so many of us. So you do find your tribe.”
8. It’s getting better.
- “I think things are going to be a lot better for the next generation.”
- “You know, your kid might be behind their peers but it doesn’t mean they’re gonna be behind forever. Your kid is a full human being who will grow and change just like everyone else.”
As I said, it’s amazing that this video exists and that autistic women are being seen and that people are finally understanding that autism in women looks different than it does in men, and that it can look different from woman to woman. I agree with all of these points but there’s still so much to it, to living with this everyday. So, in addition to these points, this is what I, as an autistic woman, want you to know:
- I have no idea either – Just because these behaviours and reactions are coming out of my brain and my body, that doesn’t mean I necessarily understand them. I’ve done a lot of reading about Autism and mental health but it’s just different in real life. I’m learning everyday and I hope that you’ll keep learning with me.
- It’s exhausting – As these women said, it’s draining, even when it comes to things that you enjoy. It’s like you have to consciously process everything you do, everything around you, and that takes up so much energy. I cannot manage as much as everyone else and I find that so difficult to get my head around.
- I’m doing my best – I promise.
The Last Few Weeks…
Posted on December 1, 2018
I’m not quite sure how to describe the last few weeks. Intense, maybe. There’s been a lot going on and I’ve done things and felt things that I’ve wanted to write about but couldn’t figure out how. So I’m writing this, with the good, the bad, and the weird of the last few weeks.
So first, I got to take part in a research study for the Centre for Research in Autism and Education at University College London. I’ve written about my experience with research studies before (here) so I won’t ramble on but I love doing them. It often feels like Autism takes opportunities away from me but this allows me to do something I’d never expected and that’s really exciting. I got to put the EEG cap back on and have my brain waves monitored while I did some computer tasks. It was investigating perceptual capacity in Autism (which I’ve written more about here) and it was really fun, like a Windows computer game from the nineties. And apart from trying to get the saline gel out of my hair, it was a really great experience.
I also went and gave blood for the first time. That was very exciting! I’ve wanted to give blood for years but up until now I haven’t been well enough or I was on medication that disqualified me. So getting to do it was really exciting and a really cool experience. Everyone was really lovely and I’ve since had a text telling me where my donated blood has gone. So the whole thing was really special and I will definitely do it again.
Despite these cool and inspiring experiences, my mental health has been pretty bad: I reached a new low with my depression. I feel like I’m always saying that the current period of depression is the worst it’s ever been but for me, there are real differences: new thought patterns, new emotional states, new lines, new fears. Each period of depression has a different colour. Anyway. It’s been really bad and really hard and I’ve had some desperate moments.
Medication wise, it’s been a rollercoaster. As per usual. I got myself all but off the Amitriptyline a while ago but I just wasn’t ready to try another medication straight away. It’s a tough process and I just needed some time to feel steady, even if that was steadily bad. Maybe not the most logical decision I’ve made but it made sense to me at the time. And ultimately it doesn’t matter now. I’ve started the Clomipramine, which is what everyone wanted me to do. Finding the right medication and the right dosage can be pretty gruelling and I just needed to be in the right mental headspace. I’m not sure how I feel about the Clomipramine but it’s still early days.
And on this last Monday, I went to see Maren Morris play an amazing, intimate show at OMEARA in London. The staff were great about making it accessible and I was let in without having to queue and there was a chair reserved for me – I really, really miss the days where I could stand for hours without a problem. And the show was fantastic. Maren is one of my all time favourite artists/songwriters and it was one of the best shows I’ve ever been to.
“When this wonderful world gets heavy and I need to find my escape… yeah, I guess that’s my church.” // @marenmorris was a complete dream tonight. Beautiful, beautiful songs, singing, and stories. My little songwriter soul is so happy. (x)
It might be blurry but I love this photo of me and @richardmarcmusic after the @marenmorris show tonight. We had SUCH a good time. We’re constantly listening to her music, whether we’re in a songwriting session or just chilling out and playing Mariokart. So we were two happy beans tonight. (x)
And now it’s December. Most of my family have birthdays in December and January and of course there’s Christmas and New Year. So that’s a lot of fun things but it also means a lot of high emotion and stress. It’s a tricky time. I’ve found Christmas difficult for the last few years so I’m going to have to be careful to manage my physical and mental health throughout this period. I’m going back to the post I wrote last year about managing Christmas with anxiety and Autism – if that sounds like it might be helpful, you can find it here.
Meltdowns, Halsey, Halsey, and Meltdowns
Posted on October 20, 2018
I’ve never really written about meltdowns before. Not long after I started writing this blog, I started taking Venlafaxine for my depression, which essentially numbed me to all my emotions. And since my meltdowns have always come from an emotional place, I basically stopped having meltdowns. But I couldn’t deal with not being able to feel anything: everything I do – writing, songwriting, relationships, choices – everything I do is based on emotion. So I came off that medication and my emotions (and my ability to think clearly) came back. But I hadn’t had any meltdowns until recently.
A couple of weeks ago, I was supposed to be going to see Halsey in London, something I’ve been looking forward to for years. Since I saw her in 2016. I love her songs – a masterclass in lyric writing, melody, production, songwriting in general – and she’s an incredible performer, one of the best I’ve ever seen. I particularly love the Badlands album: somehow the songs just make me feel brave. So I was really, really excited.
If you’ve been keeping up with my blog, you’ll know that my depression has been particularly suffocating recently and when it’s that bad, being out and around people is incredibly difficult. Sometimes talking about those emotions and the strength of them is helpful: just letting it out of my body lessens the pressure and makes it easier to cope but sometimes, like this time, it’s like a crack in the dam. It just started pouring out and I couldn’t reign it back in. I was desperate to get to this show though so I kept trying.
My Mum drove me to the station but when we got there, I couldn’t get out of the car. It was like a magnetic force preventing me from getting out of my seat, from making decisions. My Mum suggested alternative ways of doing the day but I could feel all the possible decisions and deviations spiralling away from me and I ended up shouting that I needed her to stop (all that anxiety and stress and emotion just exploded out of me). I just couldn’t. I couldn’t find the right decision but I knew when they were wrong. So my Mum said she was going to drive me to London and take me to the show. That’s the only way I was going to be able to go. So that’s what we did.
This is one kind of meltdown. There seem to be different variations of them based on the situation. Usually, I can’t do anything after having one; usually I just have to go and sleep until I feel like myself again. But my desperation to go to the show pulled me through all of that somehow. It took me over an hour to be able to think clearly and make sentences again and by the time we got to the show, I was just about functional – I could walk, I could interact with others (although I still couldn’t make eye contact with anyone) – although I felt like I was in a different dimension to everyone else: we could see each other and interact but it was like we were on different frequencies. I’m mixing my metaphors I know. Meltdowns mess with your head.
It was an amazing show. Halsey shows are unlike any other shows in my experience. She gives everything to her performance. The energy is just off the charts, her vocals were incredible, and the stage/backdrops are complete works of art. The songs I loved before, I loved even more. The songs I liked before, I loved by the end of the show. The performances and the stories she tells about them make every single song special and I will hold on to all of it forever.
Because of the meltdown, I was in a really strange headspace: I felt far away and disconnected and kind of lost. So I couldn’t enjoy the show in the way I would have had I not had the meltdown. But I did enjoy it and looking through my photos and videos makes me so, so happy and grateful and proud that I managed to get there. And it helped somehow. I can’t really explain it but it helped. It’s like it filled in all the cracks with gold, to use a Japanese art form as an analogy.
I got home, went to bed, and got up the next day, ready to do the whole thing again, although without the meltdown (or so I thought). As an autistic person and a concert lover, I really like to go to shows twice where possible. With the lights, visuals, music, the scream, the energy expended, the energy expended getting there… I find it incredibly difficult to process everything and I get overwhelmed very quickly. It all starts to pass through me without really landing. Fortunately, the only thing I really spend money on is concerts so that is something that I am sometimes able to do.
For several days after a meltdown, I feel really, really fragile. So my Mum – my hero – said she’d come to the show again. Thank goodness she likes Halsey too. So we drove up to London, got to the venue, and really enjoyed the show. My god, Halsey is just so good. And seeing it twice just meant that I could take in all of it and that was just so amazing. Some of my favourite moments include (I could easily list everything but I’ll try my best to just keep it to a few):
- The opening song, ‘Eyes Closed,’ will always be special to me because of the feeling it created. The energy in the room lifted by tenfold and it was the closest thing to magic I’ve ever experienced.
- How she left it to the crowd by shout the lyric, ‘Do you call yourself a fucking hurricane like me?’ I wasn’t expecting that and the intensity of the crowd just took my breath away.
- The visuals for ‘Hurricane’ were the most beautiful things I’ve ever seen. And during the song, she shouted, ‘London, this song is a reminder that you do not belong to anybody but yourself!’
- The little B stage that I thought was made up of LED lights but was actually covered in water (I really have no idea how to explain it) where she and her dancer stamped and kicked water into the crowd during ‘Don’t Play.’
- The volume of the crowd when everyone sang along to the stripped down version of ‘Closer.’
- The way she sat and talked to us, the story she told about ‘100 Letters,’ and how she finished by saying, ‘You only get one you in this life. Do not waste it on someone who doesn’t appreciate who you already are.’ Maybe it sounds cheesy but in the moment, it almost brought me to tears. I’m tearing up even now as I write this. The shows were just one empowering moment after another and for that, they will always be incredibly special concerts to me.
- The beautiful flower backgrounds for ‘Now or Never.’
There are so many more moments I could name but I’ll leave it there. They were two really incredible concerts and I feel so lucky to have experienced them.
When the show finished, I was absolutely exhausted, physically and mentally. Walking down the stairs to the venue exit was physically painful. I’d specifically bought a seated ticked because I don’t have the energy at the moment to stand for such a long period of time but there were two girls who stood for the whole thing (almost everybody sat behind them ended up standing in the aisle so that they could see – they refused to sit down or move despite the disruption they were causing) so I kept having to stand up to see. My whole body hurt by the time it was over. Apparently that’s another unexplained Autism thing: fatigue and pain and so on with no obvious cause.
We made it out of the venue and were halfway across the street – standing on the traffic island – when an ambulance less than a few feet away turned on its siren. I don’t know if I can really explain it: it’s something so deeply rooted in emotions and sensory stuff that I’m still searching for the right words. I might never find them. But the sound – the high-pitched, ear-splittingly loud sound – just completely overwhelmed me in a split second. It was like it blew a fuse in my brain and suddenly I was screaming and my knees buckled and I would’ve hit the ground if Mum hadn’t caught me. At some point the screaming turned into crying and shaking and somehow my Mum got me onto the tube, back to the car, and home to my bed and my cats. It took most of the journey before my brain reengaged and I could think in complete sentences but even then I couldn’t talk. It just took too much energy.
We got home, went to bed, and I spent the next few days recovering. In truth it took me over a week to feel like myself again and to process and commit to memory the amazing moments from the concert before the meltdown, before my brain shut down. It was a lot to make sense of. Meltdowns are traumatic and I don’t use that word lightly. I will write more about them, when I’m in a more stable, more composed place. I’m more than a bit all over the place at the moment. But this page here is an amazing resource so do have a look at that if you want to know more about meltdowns (and shutdowns).
And just in case:
Thank you Halsey (I never know whether to think of you as Halsey or as Ashley). Thank you for an amazing show and a treasured experience. It might’ve been a rough weekend but the shows were worth the meltdowns. Concerts make me feel alive, make me feel real. You gave me that and I’m really grateful.
Finding Hope 