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.

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.)

Getting A Diagnosis – The Mental Illness 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 mental health diagnoses.

My mental health problems became very acute when I failed an exam at sixth form in March 2013. I was eighteen and it was the first time that had happened. There’s a lot of stuff behind why that was the breaking point but I’ll talk about that in a different post. Otherwise we’ll be here forever; I’m already splitting this post in half. I hadn’t been oblivious to my mental health up until that point but I hadn’t recognised the signs for what they were; my knowledge of mental health had been pretty limited. But I’d always felt like there was something wrong with me (I now know that it’s different rather than wrong but that’s how it felt and sometimes still does feel) and I know that my depression and anxiety had been building up to that moment, that critical incident.

After that, I started seeing a psychiatrist that a family member had recommended (my GP had been unhelpful at best and distressing at worse). He diagnosed me with Clinical Depression and gave me an anti-depressant called Paroxetine to try. I don’t have enough experience to judge whether he was a good psychiatrist or not but I don’t remember feeling particularly supported by him. I only saw him a few times before I switched to a psychiatrist closer to where I lived. The Paroxetine made me incredibly sleepy; it was like they put me into a waking sleep that I still don’t feel I’ve really woken up from. I switched to Sertraline but that was even worse: I felt like a zombie and that was so upsetting that I (unwisely) stopped taking it cold turkey. That was a Bad Move, such a bad one that I still capitalise the first letter of each word. For a while I was very dissociated and then my anxiety came back, even stronger than it had been before. So I was a bit put off by medication but the diagnosis was helpful and I started going to CBT.

That ended up not being the right thing for me and the energy it took was just too much so I quit, not forever necessarily but I needed a break and we wanted to explore some of the other options. I tried several other things over the next year before deciding to try medication again. Both that first psychiatrist and the CBT consultant had been private but I couldn’t get the NHS to help me. I have to say here that I have so much (SO MUCH) respect for the NHS. It has saved the lives of several of my friends and I will defend it to the death but I don’t feel it has yet got it right when it comes to mental health. In my case, my anxiety was so bad that I found it incredibly difficult to talk to people I didn’t know. My Mum would explain the situation but we were repeatedly told that if I wouldn’t talk they couldn’t help. That was very distressing. Logistically I understand that it’s more difficult to communicate if a person can’t talk but that’s not an excuse to refuse care. The not talking was a result of my anxiety, which falls under their job description. They should’ve helped me. They should’ve at least tried. But they didn’t and I was struggling so much that we were forced to go private. I am endlessly, endlessly grateful that my family have been able to make that possible. It has, without a doubt, saved my life.

We found a new psychiatrist in the summer of 2014 and after such a horrible year, I was determined to make it work. I walked into his office, sat down, and started talking. I still don’t know how I did that. I was just as anxious as I had been before but I guess that’s desperation for you. Maybe it was my survival instinct. Anyway. My psychiatrist has since told me that he couldn’t believe I had such bad social anxiety because I had been so articulate and direct. Again, I’m putting that down to desperation (and I wouldn’t be surprised if the ability to mimic ‘normal’ behaviour – something that many girls with autism have learnt to do – came into play here too). But as I told him more, he started to understand where I was coming from and what I was dealing with. He put me on Phenelzine, which made a massive difference (I’ve written more about that here) and we continued our sessions so that he could get as much information as possible.

I wanted him to give me a diagnosis. I wanted a name for the thing (or things) that had so much power over me. I wanted to know what was really me and what was this indistinct, suffocating black shadow. I thought he’d have me do a load of diagnostic tests and questionnaires and then give me his findings but it felt more like therapy, but with a focus on my past experiences (rather than strategies to move forward). He didn’t seem in a hurry to find the answers and I didn’t know how to fast track the process. Eventually we got the deadline I wanted: my university said they couldn’t help me until they had an official diagnosis. But again, it wasn’t how I’d expected it to be and again, it was incredibly slow. Throw in that I’d just started university (which came with new people, new classes, and commuting into London) and I was under a lot of stress, as you can probably imagine. How I didn’t have more autistic meltdowns, I have no idea.

I couldn’t just do nothing. I spent hours searching the internet, looking for anything that might explain my experience. I examined diagnostic criteria and read medical papers; I scrolled through forums and took diagnostic tests. I’ve read a lot about the back and forth on self diagnosis (something I definitely want to discuss in more depth at some point) but for me, I needed a professional diagnosis, both to get the help I needed and to validate how much I’d struggled. Grouping my symptoms together and trying the strategies advised for whatever label fitted that group wasn’t going to be enough. So I used those test results as a starting point. Eventually I came across Borderline Personality Disorder and more specifically, the ‘quiet’ presentation of BPD. This means that they have many of the same symptoms (including mood swings, problems with self worth, unstable identity, and difficulties with relationships) but rather than ‘acting out’, they ‘act in’: they direct their negative emotions inwards, hiding them rather than projecting them onto others. Many struggle with issues around self hatred and self harm. If they lie or manipulate, it’s to protect themselves from perceived abandonment and they may avoid or distance themselves in relationships because they don’t want to be abandoned or because they feel they don’t deserve those connections. The ‘quiet’ presentation made a lot of sense to me because while I struggled with many of the problems associated with BPD, I rarely lash out so this felt like something to explore.

So, buoyed by momentum that discovery had given me, I took it to my psychiatrist. And he shut me down straight away. He said that I didn’t fit the criteria and moved on to something else. I didn’t understand: I was struggling with so many symptoms associated with BPD, almost all of them when you factor in the ‘quiet’ presentation. I couldn’t believe that it wasn’t worth, at the very least, a little bit more discussion. And at the end of the session, he said that he thought we’d done all we could do. I was devastated. And incredulous: we hadn’t achieved anything. If that was it, I was back to square one. Or minus one after everything the process had taken from me.

That session sent me into the worst place I’d been and after a particularly horrific meltdown, I spent several days in a fragile, barely responsive state. But once I recovered from that a bit, I got to work. I went back through my research and symptom by symptom, anecdote by anecdote, I wrote down everything I related to, everything I’d experienced, anything that could be relevant. It wasn’t that I was certain it was BPD, it was that I was certain it was something. This seemed as good an explanation as any and my psychiatrist wasn’t offering anything better.

When I was done, the document was seventeen pages. I’m pretty sure it was longer than my dissertation for university. And then we went back. I presented him with all my research and something very surprising happened. I’d hoped he’d accept it as something to explore and not only did he do that, he admitted he’d been wrong and apologised for dismissing it. Even now, that feels like a very important moment. In my experience, medical professionals aren’t naturally inclined to apologising, let alone admitting to being in the wrong. And I’d been ignored for a long time. When it came to my health, physical and mental, doctors had always looked at the most obvious option and then, when that didn’t fit, they’d just shrugged their shoulders and brushed me off. So this was a big deal.

And at the end of that session, I had my diagnosis. Or more accurately, my diagnoses. He pulled together everything he’d learned about me and diagnosed me with Borderline Personality Disorder, Anxiety, Social Anxiety, Depression, and OCD. It was a very strange experience. Momentous and anti-climactic at the same time. I felt light enough to float away but so exhausted and heavy that I wasn’t sure I could get out of my chair. I felt like I might burst into tears at any moment but I had this weird, hysterical urge to laugh. I felt invincible and incredibly fragile at the same time. Very strange.

Finally getting names for the monsters I’d been struggling with was incredibly validating. It was real. I wasn’t ‘crazy’ or ‘over dramatic’ or ‘too sensitive.’ It also made it real to everyone else. And although part of me was steadfast that something was wrong, I had started to doubt myself, having been dismissed by so many people. I was constantly fighting against falling into a well of despair, of fear that this was just going to be how life was for me. But the diagnosis confirmed that they were problems and most problems have solutions of some sort.

The diagnosis enabled me to get the support I needed at university and gave us some idea of what kind of talking therapy might help. Dialectical Behaviour Therapy (DBT) is recommended for people with BPD and that’s what I’m still doing, about three years later.

(I have no relevant photos for this post so here are a couple from around that time.)

Learn With Me

I was diagnosed with Autism Spectrum Disorder at the age of twenty, after actively struggling for several years. When I use the word ‘actively,’ I mean that, while I had had difficulties with all the things that turned out to be characteristics of Autism, they had become really hard to deal with and were having a serious impact on my life and my mental health. For example, I’d always found socialising confusing and stressful but I’d managed it for most of my life, thinking that that was just how I was built. Ultimately, that’s true but knowing where it comes from has been very helpful, both in validating that struggle but also in helping me to learn how to cope with those feelings. So, the diagnosis was a really big deal but I still think a lot about why it came so late and what that means.

In my opinion, there was one big reason why it took so long to get a diagnosis and that was the lack of awareness and understanding around both mental health and Autism, especially in women. Because Autism in women often presents very differently to the stereotypical male presentation, no one even mentioned it until we’d been looking for an explanation for more than eighteen months. I have a couple of blog posts about the process of getting my diagnoses coming up but the short version is that we started out by looking at my mental health. We went to various people but no one took my anxiety, my depression, and so on as serious problems, brushing them off as things that everyone deals with. So it took a lot of work to get even one person to recognise that what was happening was an actual problem, and then even more work to get them to see that that was part of a bigger pattern. And I know that all of that was down to this general lack of awareness about how Autism can manifest and again, how it can manifest in women.

I am very grateful to have my diagnosis, regardless of how long it took to get it but I do think that getting it so late has had a detrimental effect on me:

  • Expectations, my own and those of others – Having grown up assuming I was neurotypical, I have always compared myself to my neurotypical peers and hated myself when I couldn’t measure up. When I got to sixth form, I started to really struggle (mentally, socially, academically) and so the whole thing started to snowball. And because I was comparing myself so viciously to those around me who were coping so much better, I did great damage to my mental health and self esteem. Had I known that my brain worked differently and that I might need support, those two years of my life would most likely have been an altogether different experience. Even now that I know the difference is there, I still find it really difficult not to compare myself to others; I still often see myself as less capable or less intelligent or less whatever word is relevant to the situation.
  • The mental health consequences – While this is not something I can scientifically prove, the chances are that this whole process has had an impact on my mental health. Being repeatedly invalidated and brushed off definitely made my depression and anxiety worse. That invalidation may also have triggered the development of Borderline Personality Disorder; I’m not qualified to make a definitive statement on that but between discussions with my health professionals and my own research, it’s a theory if nothing else.

I’ve often had friends and family ask what they can do to help me and to be completely honest, I don’t know. I’m still trying to figure all of this out for myself: what’s affected, what helps, what doesn’t… Sometimes it feels like, just because it’s my diagnosis, people think I have this deep understanding of it. I’m definitely more clued in than I used to be but even two and a half years later, I don’t always know what to do when something comes up. I think the only thing I can say is this: “Learn with me.” This is a process, which involves a lot of trial and error and over-planning and screwing up. When it doesn’t work, it’s no one’s fault. We just learn and move on to the next thing. But hopefully, we can navigate it as a team rather than a group of individuals.

I try not to spend too much time thinking about how my life would’ve been different if I’d been diagnosed at a younger age because there’s little to be gained from it. It is how it is. But occasionally the thought creeps in and I imagine this life where I’m so much more productive and engaged and independent. I don’t know if that’s how it would’ve played out but it’s a seductive thought. But as I said, I try not to go down that rabbit hole. I think it comes down to this: there are people I wouldn’t have met and experiences that I wouldn’t have had if I’d been diagnosed as a child and ultimately, I wouldn’t give those up for anything.

The Boy On The Bus

A few weeks ago, I went up to London to go to a concert with one of my friends. On the train, I’d started writing a new blog post (about getting a diagnosis – expect it soon!) and when I moved from the train to the bus, I kept going. Twenty minutes into my journey, a boy sat down next to me. I’m terrible at guessing ages but I think he was around twelve. I was in my own little world, typing furiously, when he asked me how long it had taken me to write “all those words.” It took me a moment to shift gears. I thought about it and said that I’d been writing for about an hour and a half. He looked half-amazed and half-appalled, which made me laugh. I told him that I like writing so it was fun for me. We talked for a few minutes before he asked me why I would want to put everything I’d written on the internet for people to see, which surprised me: I hadn’t thought he’d been reading over my shoulder.

I’ve been thinking a lot about that question. There are a lot of ways of answering it and I’ve been turning them over, trying to figure out which one is the best, which one represents my feelings in the truest sense. But maybe I need all of them to explain it: because I have this need to be honest, because I like to write, because I want to do something that matters, because I want to help people, because I’ll explode if I keep all of this inside me, because I want to be a part of changing how people see mental health, because I don’t want it to always be this hard… If I put something out into the world, maybe something will change. If I do nothing, I change nothing.

I’ve known some people who are very against giving people their hard earned secrets and while I agree with that in some areas (as much as I complained, doing the hard work in school subjects like Maths because the teacher withheld the shortcuts did mean I learnt more and retained it longer), I categorically don’t when it comes to mental health. If something I’ve learned can help someone else get a diagnosis or support with even slightly less struggle, then I will absolutely share it. Of course I resent how long it took and how painful it was to get to this point but that doesn’t mean I want someone else to go through the same thing. Imagine how quickly things would change if each person in the chain had it slightly easier than the person before. Feeling helpless is something I really struggle with and if there’s something I can do – anything I can do – to help, then I’ll do it. The damage that’s caused by the stigma and lack of understanding around mental health is irrefutable, in whatever form it takes. Not all suffering is equal but some people still seem to struggle with that, as if you have to go through certain things, certain examples of stigma or whatever, to be allowed to struggle. That’s just ridiculous to me. It’s like the “It’s just attention seeking,” response: if someone is asking for attention, maybe it’s because they need it. But that’s a rant for another day.

Getting back to the point… I have been so inspired by the positive, helpful things that I’ve seen people put out into the world and that’s what I want to do. That’s who I want to be.

Version 2

 

One Woman With Autism

Ask anyone about Autism and they’ll most likely describe the stereotype: difficulty socializing, a ‘lack of empathy’, specific and focused interests. But, as with everything, it’s so much more complex than that, especially for girls and women with Autism. While there are various statistics on the ratio of boys to girls, it’s clear that there are many more girls and women with Autism than was originally thought. And because the diagnosis of Autism has always been based on the male presentation of Autism, it can be really difficult for girls and women to get diagnoses and support. I can’t speak to anyone else’s experience but I can speak to mine.

I was a shy kid. I was so shy, and so anxious, that I couldn’t be left at after-school clubs or activities. I was petrified and cried until my Mum would take me home. I was constantly told I was too sensitive, that I took things too personally, that I needed to grow a thicker skin. And that really upset me – but then I was being too sensitive, wasn’t I?

These issues continued through my childhood and into my teenage years. I was always anxious and strived for perfection in everything. I was a vigilant rule follower; I couldn’t, and still can’t, break a rule for anything. I was terrified of turning in homework late, convinced it was an unforgivable act. The one time I did forget a piece of homework (because I’d taken it out of my bag to check I’d packed it and then forgotten it in a panic about being late – another constant anxiety), I cried in a corridor and my hands shook when I told my teacher. It was fine, of course, but it didn’t help my anxiety. I was so scared of doing something wrong, of getting into trouble.

In addition to that, I never felt like I quite fitted in. Anywhere. I felt like I was stuck behind glass, separated from everyone else and unable to break through it. Everything seemed so much easier for everyone else; everything they seemed to do effortlessly took all of my energy, leaving me exhausted. I couldn’t understand why I just couldn’t cope as well as everyone around me. For some unknown reason, I couldn’t function as well as everyone else and that made me feel like I was broken. Despite all of this, no one clocked that there was a problem, not a doctor, not my family, not me.

What had always just been a feeling of not coping started to take over other areas of my life. I’d always done well as school, despite missing more than eighteen months when I struggled with an unidentified illness that caused debilitating fatigue. My lowest grade at GCSE was an A (although I was disappointed with not having achieved more A*s). I got to Sixth Form and everything changed. Suddenly every class, every test was a struggle. Learning and applying knowledge had always been something that had come easily to me, something I’d enjoyed, and all of a sudden, it had become so difficult and that was incredibly distressing. My anxiety got higher and higher and depression started to creep in. I was constantly exhausted and just getting through the day started to feel like an impossible task.

The turning point came when I failed an exam. I locked myself in a toilet stall and scratched at my arms over and over with a broken paper clip, desperate to feel anything other than this howling feeling of failure that came from somewhere deeper than I’d ever experienced. I don’t know how long I sat there and I don’t remember much of that day, but that was when my family and I started to realise that there was something really wrong.

A lot went into getting my diagnosis. I’ve lost count of all the doctors I’ve seen, the amount of times we left without any answers, the amount of books we read. I’ve been diagnosed with multiple mental health problems and tried a lot of different medications. I tried various therapies like CBT and EMDR. Nothing helped. But due to my Mum’s never ending commitment, I ended up at the Brighton and Hove Neurobehavioural Service and after several hours answering questions, I walked out with a diagnosis of Autism Spectrum Disorder. To start with, I was too exhausted by getting to that point to take it all in but slowly, everything started to make sense. All these disconnected pieces of my life and my personality began to click into place.

I’ve always felt emotions strongly. If something goes well, I feel like I’m bulletproof. If something goes badly, I can end up in a meltdown: crying, shaking, screaming, and often self-harming. Either that, or I go into shutdown where I retreat to my room and lie in the dark, unable to think or talk properly. Sometimes a meltdown leads to a shutdown and it can last for days, or even weeks.

I’m extremely sensitive. To a lot of things. A change of plan, loud noises, bright lights, unfamiliar people and places, all of those things increase my anxiety, making it difficult for me to function, to make decisions, to interact with people or the environment around me. Processing that information takes a lot of energy and I’m easily exhausted and overloaded. Too much sensory information, too many demands placed on me, the closer I get to a meltdown. It’s a fragile existence, like walking on a tightrope.

I’ve never had trouble with empathy, with ‘stepping into another’s shoes’. Or more accurately, I’ve never found that difficult to do. My struggles tend to be with the other extreme: I’ve been told I’m too empathetic. I frequently experience other people’s emotions as if they’re mine and with such strength that I feel completely overwhelmed. It’s strange and upsetting to, for example, feel grief for someone I didn’t know. It can feel like I’m intruding even though all I ever want to do is help because I know how strong those emotions can be. It’s incredibly difficult for me to see someone upset and not be able to do anything. It can also be very difficult to do something as simple as walk down the street. I just feel overwhelmed by how big everyone’s lives are, how much makes up a person: memories, favourite colours, foods they hate, things they want to happen, things they don’t want to happen, phone numbers they’ve forgotten, songs stuck in their heads. I could go on forever. And when I’m surrounded by people, I feel all of that pressing in on me. It makes it hard to breathe.

Socialising is difficult. Again, processing all the information around me takes a lot of energy: a person’s words, body language, tone, how other people are reacting, everything going on in the background. It’s hard work. It feels like everyone else has a rulebook that I never received and so I’ve had to learn how to be social. Where everyone else processes all this information automatically, I have to actively process it, which takes a lot of energy. So it’s not hard to imagine why I’m tired out very quickly by social situations. Of course many people don’t notice this and have no idea that I’m autistic. Even the visible signs go unnoticed, like my difficulty with eye contact. Aside from the fact that I have no idea how long you’re supposed to hold eye contact for or which eye you’re supposed to look at it, I also feel very vulnerable when someone is looking into my eyes, like they can tell what I’m thinking and feeling.

I do have my own specific interest: writing, in all forms, but my favourite is songwriting. I’ve read a bit about these focussed interests and apparently the interests in the female presentation of Autism tend to go under the radar because they can be similar to a neurotypical girl’s interests, like animals, TV shows, books, particular singers or music groups. It’s the intensity that’s different. I’ve never simply liked something; once I’m interested in something, nothing else matters. When I’m writing, I lose all sense of time. I recently spent ten hours working on a particular piece and only stopped because I noticed my hands shaking. When I looked up, it was dark and I realised that a whole day had passed and I hadn’t eaten. Writing, and writing songs, is everything to me. It’s the only thing I want to do, the only thing I want to do for the rest of my life. It’s hard though, because there’s a big part of me that feels like my life isn’t worth living if I’m not doing that one thing, if I’m not doing songwriting. The music industry is tough as hell so it’s terrifying to think like that. But that’s the truth.

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Of course there are other symptoms and this is just one presentation of Autism. As the specialist that diagnosed me said, we are the experts of our own Autism. But, in my experience, it’s really hard. And it’s made harder when there’s so little understanding around the way Autism affects girls and women. Life post-diagnosis is difficult but at least I know what I’m struggling with. I’m learning what helps and what doesn’t. Not knowing was awful. I felt like I was drowning, like I couldn’t even find the surface. And the years of asking for help and being turned away made it worse. The lack of awareness and understanding about how Autism affects girls and women has real consequences. The time it takes to get a diagnosis and the repeated invalidation causes problems of their own. The people supporting me now think that that was part of the reason I developed Borderline Personality Disorder, a mental health problem that involves instability of mood, behaviour, and self image. And I will never forget one particular doctor’s opinion, that maybe that’s just how life was going to be for me. That remains one of the most upsetting experiences of my life and years later, I’m still struggling to believe that I will ever be happy.

I am so lucky to have found the people who are supporting me now and I feel it because I know that without them, there’s a very real chance that I wouldn’t be here now. But there are so many people without this support. There needs to be more information, more awareness, more understanding of Autism in women. Too often it goes unidentified and the effects of that can be worse than the struggles caused by the Autism itself.

Happy Diagnosis Day!

I posted about this on Instagram but I wanted to write something for here too.

On 5th August, it was the two-year anniversary of my Autism diagnosis and I decided that I wanted to celebrate it. It was already a really busy day with Brighton Pride and the birthday of one of my best friends but when I got home, I had cake with my family. Me and my Mum made a chocolate cake together and stuck a little sign on top that said ‘Happy Diagnosis Day!’

I’m not sure whether I’ll ever be able to celebrate actually being autistic – there are still so many things that I’m struggling with – but I did like celebrating this day because getting the diagnosis was a really big deal. I finally got some answers to the questions I’d been asking my entire life. For years, I’d struggled with this unknown thing, not understanding why I couldn’t seem to function as well as everyone else. It felt like I was broken. And getting the ASD diagnosis changed that. It explained things I hadn’t been able to understand and it gave me a place to start when looking for support. Suddenly this massive, intangible thing I was wrestling with started to make sense.

It’s not perfect and it’s not easy but this date represents an end to that chapter of my life and the beginning of a new one, hopefully a better one. And I think that’s worth celebrating.