What Women With Autism Want You To Know

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…

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.

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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.

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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

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.

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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.’

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  • 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.’

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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.

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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.

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My Experiences with Therapy

Going to therapy hasn’t always been easy. I feel so, so lucky to have such an amazing therapist now but I had a lot of difficult experiences before I started seeing her. So I thought I’d share some of those experiences. Maybe they’ll be helpful.

After many, many appointments with my GP, I was finally referred to the local NHS Wellbeing service but the session didn’t go well. At this point in time, my anxiety was so bad that I couldn’t talk to people I didn’t know. I just couldn’t. Answers to questions would form in my mind but I couldn’t force them up my throat. So I sat there, in tears, while the doctor tried to get my Mum out of the room and told me he ‘wouldn’t’ help me if I didn’t talk. I don’t want to rant but I WAS STRUGGLING WITH A MENTAL HEALTH PROBLEM. I wanted desperately to be able to talk about it but I couldn’t. I don’t remember much about that appointment but I do remember standing in the street afterwards, shaking and crying and screaming and swearing. I couldn’t understand why no one was helping me when there was so clearly something wrong.

My second attempt at therapy was a bit better. I started Cognitive Behavioural Therapy (CBT) with a really lovely therapist. She was very patient and very open to working around the anxiety that kept me from talking. She was also happy to have my Mum in the room: it helped my anxiety and meant she could provide information. Slowly I started to trust her and started answering questions myself. But it was exhausting, bone achingly exhausting. As hard as we worked, I didn’t feel like we were making any progress and it was too hard to go through that to make no progress. I really liked her and I could tell that she was a really good therapist but the approach wasn’t right for me. I found the format too rigid. In simple terms, CBT is about breaking down your problems and then trying to create change in those areas. I felt, and still do feel, that my problems are too murky for a short stint of CBT. I know now that many of my problems originate from my Autism and the fact that it went undiagnosed for so long but even with that knowledge, the difficult things still feel overwhelmingly huge. I can see CBT being useful for a specific anxiety. For example, we tried to work on my anxiety around making phone calls. But I think the reason it didn’t work is that it wasn’t an isolated problem; it was a piece in a much bigger puzzle. I don’t think you can solve that sort of problem if you don’t know what’s causing it. Plus, being rational about what you’re struggling with in the controlled setting of therapy and being rational when it’s overwhelming you are very different things. CBT sort of assumes that you can still apply the skills you’ve learnt in therapy regardless of how you’re feeling, which can feel impossible, especially if you live with really powerful emotions. But maybe that’s just my perception.

The next thing we tried was Eye Movement Desensitization Reprocessing (EMDR), recommended by a family member. In the few months between finishing CBT and starting EMDR, my anxiety had sky rocketed so starting a new therapy was really hard. It was so bad that I actually never spoke to the guy I worked with. But despite that, and my difficulty with eye contact, communicating with him was easier than it had been with previous therapists. He was fantastic. He accepted my difficulty speaking and suggested writing on a whiteboard. I considered that and it felt possible so that’s what we did. He asked me questions and I replied, scribbling as fast as I could. It worked. And to take the pressure off, we would spend part of the session on the floor, playing dominoes while he asked me questions. I felt absolutely safe there. It was incredibly strengthening to have someone accept my anxieties as they were, to have someone recognise that I wasn’t just being difficult, that I was genuinely struggling with something really hard. And although it didn’t turn out to be the right thing for me, the sessions are still really important to me. For several months, we worked hard. We tried. I felt supported. And even though I didn’t ever speak, I did once sing for him and he almost cried. That was a pretty big moment.

After that, I didn’t go to therapy for a while. There was a lot of life stuff going on and there just wasn’t the time to find someone new. But I did start seeing a new psychiatrist. He prescribed me Phenelzine (which I’ve previously written about) and we spent a lot of time trying to figure out what was causing my problems. I guess it was a type of therapy. We went through my history and analysed my emotions, trying to find a diagnosis. The medication helped and we managed the side effects but it still took a long time. When my university said that they couldn’t help unless I had a diagnosis, I pushed for this and in January 2015, I could finally put names to the issues I was struggling with (apart from the Autism diagnosis which came several months later). My psychiatrist recommended Dialectical Behaviour Therapy (DBT) so we started looking for another therapist.

My current therapist is the first one we met. I just knew she was right; me and Mum walked out, looked at each other, and said, ‘she’s the one.’ We did meet another one but my mind was made up. And we were right. She’s amazing. I’ve been seeing her for three years now and I’m so grateful to have that safe place. DBT suits me much better. It’s based on CBT but, as the Mind website says, it’s “been adapted to help people who experience emotions very intensely.” They both help with changing unhelpful thoughts and behaviours, but DBT also helps you to accept yourself. It’s about a balance between acceptance and change. That really makes sense to me and always has.

In the beginning, I needed my Mum in the room with me and she would answer all the questions. We’d always talked about everything so she knew pretty much all the answers. But over time, I felt more comfortable there. I needed Mum there less and less and eventually I started doing the whole session by myself. Three years later and it’s really, really important to me. It’s a huge part of who I am. It’s not easy; it’s really hard work and I often come home exhausted, sometimes falling asleep on the sofa afterwards. But it’s really satisfying to talk things through, to make connections, to see change happen. I’ve talked about things that I never, ever thought I would talk about and I’ve worked through things I never thought I’d let go of. That’s so huge that I can’t really comprehend it.

So that’s my therapy journey. For me, it’s DBT that works but I’ve seen the others help people too. You need to be ready, you need to find the right approach, and you need to find the right person. It’s not easy but it is worth it.

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

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

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

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

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

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

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

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

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

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

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When Things Get Really Bad

Since I last posted on here, literally all I’ve done is survive.

After putting up last week’s post, I went to therapy, which just about wrecked me. It was really hard going. I don’t want to get too into what we talked about and what I’m currently struggling with because I’m really struggling with it and I’m still figuring out how to put all of it into words. But I think the gist of it is important to include: I’m struggling with ‘feeling’ autistic, like I’m never going to be able to function the same way as everyone else. I don’t know how to cope with a thought like that. And that has really triggered my depression, in a massive way. I feel like I say this every time, but it feels like the worst place I’ve ever been; but maybe I say it every time because each time takes more out of me.

It looks so small and simple when I write it out like that. But in reality it’s powerful enough to overwhelm everything.

I left therapy feeling absolutely drained. I didn’t know how I was going to get through the day, get through the week to the next session. But somehow I did, one minute at a time. This week has been about survival because sometimes that’s all you can manage – I feel like I’m standing on the very edge of the black hole that is my depression and it’s taking all of my focus to not get pulled in. So while I feel like I’ve achieved nothing, I’ve actually achieved everything. At least that’s what I’m trying to tell myself.

So I thought I’d write down what I do when I’m in this place, where the only thing I can do is survive:

Each day, I get up at seven and go to the gym to swim for thirty minutes. I always want to do more but through trial and error (usually error), I’ve found that this is the amount I can do and still kind of function. If I push on, I end up falling asleep during the day and screwing up my sleeping pattern or I end up in a place where everything makes me cry. So I’m trying to be sensible and build it up slowly.

I get home and head for the living room. I curl up on the sofa, turn on the TV and continue the rewatch of whatever TV show I’m watching (currently The Mentalist). I’m not really watching; it’s more about having familiar, comforting background noise so that the scary thoughts can’t get in. Then I find something that will distract me from all the overwhelmingly difficult things. The activities that work best for me are playing piano and printing, cutting, and sticking pictures from Tumblr into notebooks. And sometimes reading a book works, if I have the concentration to actually read.

And I use those things to get me through the day. I spend time with the animals in my house. I’m lucky enough to have a Mum who works from home so that I can have someone with me when I need to have someone with me. I try to eat well.

And then I go to bed not too late and start all over again.

It’s a hard thing to get my head around and I’m aware that I’m very hard on myself. Because even though I genuinely believe that sometimes all you can do is survive, I find myself getting desperately upset that I’m ‘not doing anything.’ I feel like I’m not trying hard enough – in my mental health, in my music, in my life – and that I should ‘push through it.’ And it’s so hard to think that when I feel so overwhelmed by my depression.

And, outside all of that stuff, someone I care about is in hospital and no one really knows what the outcome is going to be. So I’m trying to manage all the anxiety around that too but it’s like trying to stand on ground that’s constantly shifting.

I think that, if I keep writing, I’m going to end up going in circles: ‘it’s okay to focus on surviving’ to ‘I should be trying harder’ and back to ‘it’s okay to focus on surviving’ and round and round and round. So I’m going to stop here. But regardless of all my anxieties and negative thoughts, I know that it’s okay to focus on surviving. And I hope you know that too.

Getting A Diagnosis – The Autism Edition

This is something I’ve been meaning to write about for a while but it’s such a big topic that I was very daunted by just how much I needed to include. I’d open a word document, stare at it for ten minutes, and then switch to something else. You’ll see what I mean. Getting a diagnosis is a complicated and emotional process that is so different for everyone but I had no idea how difficult it would be when we started pursuing it. So I thought I’d write out my experience, just to put out into the world one version of the story. Maybe yours is similar, maybe it’s different. Hopefully you’ll get something out of it either way. And if you’re trying to get one, maybe this will give you some idea of the hurdles. I don’t want to scare anyone off; it was a brutal experience but it was absolutely life changing and life saving, both for my mental health and for who I am as a person.

I’m going to split this into two posts because although they’re linked, the processes for getting the mental health diagnoses and getting the ASD diagnosis were very different for me. I don’t know if that’s the same for everyone. This post will be about getting the ASD diagnosis and follows on from the one about my mental health diagnoses. If you’ve read that one already, you’ll know that it took several years to get to that point.

During our search – mine and my Mum’s – for an explanation as to why I was struggling so much, Autism came up several times. We didn’t pursue it straight away because I didn’t fit what we knew of it and because multiple health professionals had dismissed it. So we focussed on the mental health perspective and managed to get those diagnoses in January 2015. But it kept coming up and after talking to practically everyone we knew, we ended up at ASSERT, a local charity that supports people with Autism Spectrum Disorder. On their advice, we contacted the Brighton and Hove Neurobehavioural Service and that resulted in an assessment (in August 2015).

The assessment itself was pretty intense: three hours of answering questions about my life and my experiences, followed up by another appointment where it was all explained to me. The woman who assessed me was lovely, which made it easier, but it was exhausting. Afterwards, I received an eight page report with all the relevant information. I know I’ve already written a post about the presentation of Autism in women but this is the more detailed, clinical side of it, to give you an idea of what was asked and what went into getting an Autism diagnosis.

The questions – and the report – were broken down into several sections:


DEVELOPMENTAL HISTORY

As a child, me and my brother played make believe games that involved the creation of very elaborate worlds, with characters and histories, and they often lasted for months, if not years. My other staple ‘game’ was arranging my toy animals into “carefully crafted scenes.” I did this over and over again, in a “notably ordered and systemised” way.

I was incredibly shy and although my speech and language were ‘well developed,’ I did struggle socially. I didn’t have many friends but the friendships I made were incredibly important to me (“the very commonly observed capacity for young women on the spectrum to make very intense, uncompromising attachments to individuals”) and the loss of those connections was “deeply traumatic.”

I did well in school because I had “an unyielding need for perfection” and a “capacity for intense engagement in subjects.” No one (including me) noticed any difficulties because I was quiet and hardworking (“like many young women on the spectrum”) but having said that, I was absolutely exhausted by school. I’d get home, collapse on the sofa, and kind of zone out, almost leaving my body. Time would pass and while I was still functional, it felt like I was on autopilot until I ‘returned’ to my body. That was how I processed school and how it completely exhausted me.

The one thing that I did notice and struggle with was my absolute need to follow every rule: “Lauren has a lifelong sense of right and wrong and cannot deviate from rules.” I’ve always struggled with the way people seem to know which rules are important, who they apply to, and so on. And even when there was good reason to break a rule, I could not do it.

“Moving to the chaotic, unstructured, unfamiliar sixth form [was] deeply traumatic. It was at this point that her meltdowns and mental health became of acute, identifiable concern.” Couldn’t have put it better myself.

RECIPROCAL SOCIAL COMMUNICATION

“Although Lauren has worked hard to integrate socially, she has clear lifelong social difference.” Socialising has always felt incredibly complicated and stressful. “Lauren has the almost universal autistic sense of feeling ‘alien’ (or as if behind glass) from other people. She feels exhausted by the social world. People are mysterious and chaotic to her, and although she is highly observant of others and learns and copies social behaviours, the possibility of unpredictable social behaviour provokes acute anxiety. She shows evidence of the triad of impairment but this is scaffolded and obscured by her intelligence and vigilance.”

Eye contact is tiring and uncomfortable. It feels so intimate – too intimate. And I don’t know which eye you’re supposed to look at.

I’ve always struggled with making phone calls, particularly when it’s someone I don’t know. Because I’m only hearing someone’s voice, I feel like I’m not getting enough information to ‘read’ the social interaction and so I get really anxious about saying the wrong thing or getting overwhelmed and missing things. I can just about handle it with people I know, where I’ve learned the ‘conversational rhythm.’

It’s a myth that people with Autism aren’t empathetic. I’ve always felt like my empathy is overwhelmingly strong, to the point where it can actually incapacitate me. For example, after finding out that a friend was severely ill, I was so distressed that I was barely able to get out of bed for about three days: “[Lauren] is prone to fixating on helping people and is often very upset when this is not possible. Women on the spectrum are often highly sensitive to suffering in others and are drawn to the ‘caring’ role. This can leave them socially and emotionally vulnerable.”

I get overwhelmed very quickly, because I can’t process things as quickly as they happen. The best way I’ve found to process stuff (experiences, sensations, emotions) is to write everything down: “Lauren writes everything down in micro-detail and through this process she has learnt much about the human state and the social world that is not intuitive. The detail and perseverative nature of this recording is authentically aspergic.”

RESTRICTIVE AND REPETITIVE BEHAVIOURS (NEED FOR SAMENESS)

I’ve always had the intense focus and ‘restricted interests’ that people often associate with Autism. I’ve bounced from one to another to another my whole life. When I was twelve, I wrote a twenty thousand word story that I researched in “encyclopaedic detail.” I even knew the longitude and latitude of where all the characters were throughout the story. Every detail is important: “Authenticity is of enormous importance to her.” A truer statement was never made and it’s true for every part of my life, from my songwriting to the clothes I wear.

I’ve also always had a “strong need for sameness and routine.” I didn’t even really realise it until I was asked. Everything I ‘routinely’ do has a very precise order: “She has certain non-functional rituals that she needs to perform in order to feel safe and soothed.” And any change – big or small – can send me into a spiral of anxiety, which can lead to a meltdown. “She has a need for perseverative repetitive activity to soothe her anxiety and dampen the flood of intrusive information. She has the same TV programs on and listens to the same audiobooks again and again.”

SENSORY SENSITIVITY

I have always been “highly sensitive to sensory phenomena.” I struggle to manage and process se nsory information but with sound and taste in particular. But all of my ‘sensory sensitivities’ increase when I’m under stress.

“[Lauren] appears to be particularly affected by multiple streams of sensory experience: finding, for example, places where people gather cacophonous, overwhelming and she is swamped in anxiety about all the possible permutations of each person’s life.” When I walk down the street, I’m overwhelmed by the fact that every person I pass has favourite colours, foods they don’t like, phone numbers they can’t remember, important dates coming up, and so on and so on and so on. It’s beautiful and terrifying and exhausting.

One of my biggest issues sensitivity-wise is with food and I’ve struggled with it all my life. I’m very sensitive to taste and texture so I can only eat plain foods and I hate having different foods touch each other. I find pretty much everything to do with food overwhelming: the ingredients in a meal, the preparation of food, all the sensory information… This is apparently a common autistic experience.

“Some evidence of hypermobility which is a unifying diagnosis with autism.”

CONCLUSION

“The essential features of ASD as specified in DSM-V are persistent, pervasive and sustained impairment in reciprocal social communication and social interaction; and restricted, repetitive patterns of behaviour, interests, or activities and may be most apparent in difficulties in processing and responding to complex social cues. These symptoms are present from early childhood and limit or impair everyday functioning.” My assessor took in everything we’d told her and determined that I met the diagnostic criteria for Autism Spectrum Disorder, at level one, which is ‘requiring support.’ I meet all the difficulties likely to be experienced at this level.

“It is apparent that Lauren also has issues pertaining to personality disorder. She was vulnerable to the development of personality disruption due to the complexities of her developmental difference and her experience growing up (essentially as a ‘square peg in a round hole’) was sufficiently complex and invalidating as to cause her enduring distress and propensity for emotional intensity.”

Getting the diagnosis itself was very affirming but the conclusion of the report was also really positive: “She has amazing potential and I am really hopeful that, in time, this explanation will come to be a meaningful map for a resilient and contented future.”


This isn’t a complete report, just some snippets to give you an idea of what the session was like and some of the traits that make up an Autism diagnosis. It’s not a checklist or the ASD criteria. I just remember having no idea what was going to happen and the anxiety that that caused me. So if I can make it less scary for someone else, that’s something I really want to do.

(Again, no relevant photos but here are some from around that time.)