Category: neurodiversity

Posted in Advocacy, Mental Health, neurodiversity

Ideas On Mental Health Advocacy

Posted on by Millie :)

I get wrapped up in big ideas. And big ideas are important – the overall picture is important and helps us to understand the everyday and the connections between different issues and events. But I’m interested in the idea of how we can be effective in making change too. So I consider the question – does focusing too much on the big picture get in the way of making any change at all? How accessible is it to only talk about the big picture? Are the wider ideas helpful in getting people who aren’t already interested in mental health advocacy involved at first? Essentially – how can we actually start to make change and reach more people?

The small steps are important. So too is every single voice raised, however it may be. I am reasonably good at writing and giving talks/ workshops. I also love theatre and am passionate about the arts, something I hope to marry more with my advocacy going forwards. I am not particularly good in a protest situation. I can get very overstimulated. I’m not good at phone calls. I’m not good at prolonged in person social interactions. There are many things I’m not very good at, and though I can still lend my skills to different situations, it may not be at the frontline or in the way you might expect. My power lies in recognising that – and so does yours. You do not have to come up with an innovative idea or put your life on the line to make a difference in this world. If you can do that, wonderful! But never underestimate the unique skills and voice that you bring to the table. 

So back to the matter at hand – small actions. Very important to have the wider context. But small actions built up are what really make a difference, right? Maybe! Ok, so where do we start? Ah – well there’s a problem now, because I don’t know. No one knows. 

Is the long waiting lists the place to start? Or perhaps the funding? But then can you ever really fund a broken system? I would say no. No, we cannot just fund a broken system. But I’ve also been in rooms in CAHMS and the adult mental health service where it smells weird, the paint is peeling, and the lights don’t work. So maybe we do need to bring the basic infrastructure up to a reasonable level of functioning as is before we can start reforming and introducing new ideas/ scaling back ideas that aren’t working? 

I personally would love to see an end to the carceral, cruel way the system is. But I also know most people are unaware of the true nature of the issues with the system, unable to imagine a world without it, and that the world runs on profit. So I wonder if by focusing on the immediate abolition of the psychiatric complex this part of mental health advocacy shuts people out? I don’t know! I’m not saying that I know the answer, but I think it’s important to keep asking the questions. Maybe we need to see it in steps. Steps that may eventually lead to a very different system (or even the abolition of psychiatry), but that in the meantime are still seeing improvements. And I know that improvement isn’t enough, but it is something. It’s a step on the way to freedom. 

But then here we are again at the question of where to start. Mental health is interconnected with all other social issues. So we could even argue that the first step would be ignoring mental health altogether and solely focusing on, say, housing security. But can we really do that without including mental health provisions? Probably not. So we need all these different voices and people working together on different issues! Ok, so awareness is the first step? But awareness that doesn’t just perpetuate the same easy to swallow narrative of mental health; awareness that acknowledges the need for system change and societal change too. Although, even that awareness sounds complicated so we’re gonna have to start with easier awareness to get people on board, right?

Ok so, maybe awareness alongside something else. Fighting for funding? For changing the laws on sectioning? Both? Maybe… fighting to have a nationwide, government wide, deep conversation about what steps need to be taken. Fighting to be heard by the people with the direct power to start making those changes, so we can make a plan with them. Maybe? Or is that even too tall an order?

See, I prescribe to honest activism here at Our Happy Notes. I have chosen to share my journey with you in changemaking, and for me that means also sharing my thought processes about changemaking sometimes. This is something I am currently taking time to research, to read on, and to hear other people’s ideas on – to try and ascertain where actually might be a feasible starting place, and if that’s even a good idea. I’m not at a point in researching and discussing where I am able to come up with an idea that I can articulate and share or point people towards. But I wanted to share a bit of this process anyways, because I think at the moment I do believe all change starts with a simple conversation; connection. 

So what do you think? Do you think there is one specific demand or issue that needs to be in mental health advocacy to set the ball rolling? Do you have something in particular that you think needs to be looked at? Please let me know! 

And also… how can you use your voice? That’s a question for you to consider. It’s ok if the answer right now is that you can’t. 

Sending all my love and support to you all today xxxx

Posted in Mental Health, neurodiversity

Mania @ 5:15am – A Poem

Posted on by Millie :)

I’ve written a bit before about how important creativity is to me in my mental health journey. I think creativity’s power is often overlooked. It’s expressive, healing, connecting, expanding and freeing. I think sometimes too sharing creative works can present ideas we may not otherwise be able to share. So here’s another one of my poems, written about my experience with mania:

Mania @ 5:15am

I see a girl running in the rain clothes pressed up against her body like an embrace from a lover she’s forgotten or hasn’t yet had it doesn’t matter she is wild and she is free and she is crying tears it could be ecstasy it could be the crashing waves pounding in her soul it could they flood her heart her mind it could be drugs she can’t remember what she was doing BRIGHT there is only now she is running the other people’s eyes burn something like concern or envy she keeps running there’s blood and bruises each drop of rain tastes like gin on her tongue they are every shout she’s ever heard she is drunk on life her feet pounding are like every hit she’s ever endured punching in at work her at home no confines don’t exist she learnt the best tactics she plays the game and never loses she wins by losing every inhibition sense of self it is a mask feet gliding like she’s flying air lifting she’ll never need to breathe again not ever all is in this flight her plight ongoing shriek of breaks on wet tarmac like a shattered plate thrown at the head of an eight year old unsuspecting she’s young all the wisdom of a thousand years old keeps running keep running can’t be caught she’s the leader corruption of every leads the way to BRIGHT hope to know it

life live

Running don’t 

slip.

Posted in Advocacy, autism, Mental Health, neurodiversity, Personal Growth, sobriety, therapy

Hurt by Psychiatry

Posted on by Millie :)

Content warning: ED, psychiatric abuse, suicidal ideation, any mental health topic really

I want to write a really strong and defiant letter. I want to write some crazy, proud, creative theatre piece. I want to write something truly hopeful. And while I do have hope, and I do have gratitude – because it is essential to my survival – I also have a lot of pain. And anger. I can talk openly about so many traumas and just general shitty things that have happened in my life. But the one I’ve never been able to write about, never even been able to get through a conversation about without screaming and crying, is the pain endured under the psychiatric complex. Because they were meant to help me. Time and time and time again I have gone looking for help and time and time and time again I have been turned away with only more hurt. I know help is a brave word. I’m not afraid to say it. But I am afraid that when I say it no one will listen. This is my story of a journey through the mental health system. 

Just a disclaimer, because as a writer on mental health I feel it is my responsibility – if you are in a bad place and looking for professional help, please do not use this as your excuse not to. I do know some people have been greatly helped by the mental health system, and you could be too. This is not intended to invalidate anyone’s good experiences, but rather to say that all of us deserve to have those good experiences. This is simply my story as someone who feels they have slipped through the cracks. If you feel this may affect you negatively I implore you to take the decision not to read any further. 

I first asked for help from the mental health system when I was 12 years old. I was experiencing mood swings and distress that were really bothering me – maybe just normal teenage things, maybe not, but the point is it doesn’t matter. They were bothering me. Anyone who wants help, even just to navigate daily life, should be given it. I was assigned a counsellor from the early intervention team. I didn’t like them, so I asked to change. I was discharged from the service – I took that as a message that if I had an opinion on my care, my care would be withdrawn from me. 

My first contact with CAHMS (child and adolescent mental health services) was due to an eating disorder at 14. My life was being ruled by it – I had complete meltdowns when I couldn’t exercise, was hyper fixated on food all the time, was weak and angry and alone; I was really hurting. They weighed me. They told me I wasn’t a low enough weight. I took that to mean I wasn’t sick enough. Without any regard for how I felt, or how food was ruling my life; without anyone trying to find out anything about my experience they denied me the help I so desperately needed. Suggested possibly a meal plan – with no support to implement it or formulate it. If a teacher hadn’t sat with me at lunch every single day for a year and coached me through it because she’d been there too, I don’t know how I would’ve gotten through it. 

I severely relapsed with my eating behaviours twice more, and I still struggle with some thought patterns and triggers to this day (though I am in a much better place, largely due to recovery in other areas giving me the tools to transfer). But I never felt like I really recovered from it, or had the support I needed. Even 9 months ago that teacher would still notice when my old behaviours around food crept in – even before I did – and help me to recognise and head them off. I am immensely grateful for that… but it wasn’t her job. It was never her job to be the main guidance and support in eating disorder recovery. 

CAHMS did offer me six sessions of group therapy. This was to deal with my overwhelming anxiety – much of it around socialising – and deep depression. They didn’t see it as deep depression. It was. It was really, really dark. I stopped going to any lessons and lost all sense of self and hope. But yeah, six sessions would be enough apparently (obviously not). I freaked out at the thought of group therapy, it was entirely unsuitable for me. Once again I received the message in response that if I had an opinion on my care, I wouldn’t get any care. They wanted to discharge me right then, but my wonderful mum stuck up for me so they offered me three – I repeat THREE – CBT sessions. They were not useful. I was put on a years long waiting list for an autism assessment. I was offered no more support. I continued to struggle. 

My mum’s determination to get me the help I deserved was incredible, and probably the only reason I got any support at all. (My mum is probably reading this, so thanks mum). She found a charity that was amazing in supporting us through my teen years, and funded me to see a private psychiatrist – this would not have been possible without them. However I wouldn’t say that was particularly helpful either. That psychiatrist did diagnose me with autism (side note – the assessment for autism really needs to be changed), anxiety and depression. I am eternally grateful for my autism diagnosis – it truly did change my life knowing I was autistic. But it changed my life because I went away and learnt about it, as did my family. The psychiatrist did not formulate a treatment plan for any of this, or provide any further support. Some medication that didn’t work was all she offered. 

In this time I also saw a few therapists – I didn’t like them, one of them didn’t like me and kinda dumped me. All of them were privately paid for. The subpar care I received was paid for privately – can you imagine how much worse it would have been if we hadn’t been able to afford it?

I know this is all a lot of information, but stick with me here. This journey is important to understand because it is something so so many people face. I slipped through the cracks of this system – even with the privilege of being a white, cisgendered woman. I had it reasonably easy. 

In February 2020 I had what I now recognise to be my first (and most intense) mixed episode. I cannot even put this experience into words but essentially it was all the darkness of depression with all the heightened energy and irritability of mania at the same time. I felt reality slipping away from me and I have never been in such intense distress. Two teachers stayed with me at school hours after school ended to try and keep me safe. They eventually helped me calm down, but I later found out they were so concerned they were about to call an ambulance or the police, as the crisis line wasn’t helping. I went to the GP during this episode begging for help. She prescribed me valium to calm me down, but when I begged her for more support I remember her chastising me for being so emotional because she had other patients waiting. I took that as a message that I still wasn’t sick enough; still wasn’t important enough. 

In March 2020 the private psychiatrist diagnosed me with cyclothymia. We had to pay extra for an emergency appointment. She decided I was now too complicated to be under her care and needed more support so referred me back into the NHS. They did not follow up on her recommendation for more support. By the time they saw me I was a bit calmer so apparently that meant I didn’t need help. In her eyes I was too bad, in their eyes I wasn’t bad enough. So I was left with nothing. This was the trend that would continue for the next three years. 

In September 2020 I wound up in A&E. I was broken and desperate. When the CAHMS crisis person finally arrived she acted annoyed about me being there, annoyed she had to be there, uncaring. She essentially asked ‘if things are so bad then why haven’t you killed yourself yet?’ and sent me home with no support. They didn’t follow up on any support because I calmed down a bit after, so I was no longer considered in crisis when they finally did get in contact (even though they hadn’t helped me when I was in crisis) and because I was drinking at the time. Just so we are all clear – if a young person is drinking as heavily as I was, that is exactly the time they need support. I went to my first AA meeting after I left the hospital that day. And excuse my french but thank fuck I did. I have no idea if I would still be alive otherwise. And having connected with others who have been subjected to inpatient treatment, I am incredibly grateful I did not have to bear that extra trauma. This is how bad the surface level service is – it’s even worse inside. 

After I got sober in July 2021 I was still struggling. I finally got to see a psychiatrist on the NHS in October 2021 because of my mum’s insistent fighting for me. When he asked me what I wanted from the meeting, he chastised my response. He was unclear. He shouted at me, and revoked what I thought I had been diagnosed with in a letter. I was meant to see him again in 10 weeks and he cancelled. I got discharged from CAHMS without them ever asking to talk with me about how I was doing. 

The one professional who has been a saving grace is my therapist. She is autistic herself and very flexible. But again – if I wasn’t able to fund that privately I don’t know where I would be. After my charity funding stopped when I turned 18 I had to take the sessions down to every 2 weeks, even with her sliding scale, which is significantly less helpful. Luckily I’ve also found amazing peer support, especially through AA, and spent a lot of time reflecting and doing my own work, so I’ve managed to build myself a much brighter life. But it’s been hard. And sometimes I really do need some more help – no one should have to do this alone.

I Went back to the NHS this October and had my first ever good meeting with anyone, just someone in my GP clinic. Why? He was honest. He genuinely seemed to care, but there was nothing they could offer me. He explained that as far as the system saw it, I had already been helped.

In late 2022 my mental health really started to decline again. I went back to the NHS this October and had my first ever good meeting with anyone, just someone in my GP clinic. Why? He was honest. He genuinely seemed to care, but there was nothing they could offer me. He explained that as far as the system saw it, I had already been helped. So from October I was searching for a psychiatrist who would see me. 

I was turned down by over 10 private psychiatrists for being too complex, having comorbidities, or my favourite way of putting it: ‘them not being able to offer the support I need at that time’. So I was again too bad for private and not bad enough for the NHS. One of the only people who would see me charged just under £1000 a session. Others said they would consider seeing me, but were booked up until 2024.

Finally in March 2023 – 5 months later – I got to meet with a private psychiatrist. And wow, he was amazing. We had three meetings so we could cover everything. He was kind, listened to me – really listened – and didn’t patronise. He treated me like an adult, and made it clear I would have a say in my care plan and the final report that would be sent to my doctor. I would have a say? I almost thought that wasn’t allowed. I’m still sceptical, it still doesn’t feel real. 

He diagnosed me with Bipolar type 1. Just think about that for a minute – an 18 year old has been dealing with undiagnosed bipolar 1, unsupported, emerging from 12 years old. I have no idea where I would be without the angels placed in my life along the way; without the undying support of my family and friends; without the flexibility of my school. I knew something more was going on, I knew how much pain I was in, and no one in the mental health industry was listening. I was screaming into a void and not even hearing the echoes of my own screams. (A separate issue is that we shouldn’t need labels to validate that level of human distress, which is what it is at its core, but diagnosis can be so validating. Read more about that here). 

I am not in any way saying this one experience erases all the rest. It does not. It absolutely does not. And it doesn’t not mean that psychiatry isn’t built on an oppressive, harmful foundation whose history has been hidden. It is. But it was a little hope given back to me. A relief at the very least. Before I went into that meeting I said ‘I’ll take them just not being actively mean to me’. How sad is that? What a desperately low bar. 

I’m still scared. He has instructed my GP to refer me back to secondary care teams in the NHS, which I still – like always – hope might offer some help. But the main thing offered seems to be medication, which I have some serious and valid concerns about. But I am terrified of raising these concerns or asking about alternatives for fear that a) I will be labelled as disordered and my new diagnosis weaponised against me or b) I will be labelled as non-compliant/ not wanting help enough, and sent away again. I wish I didn’t want help from them, and maybe one day I’ll be able to find a path that avoids dealing with the mental health system altogether. But I’m not there yet. Nor should I have to avoid it. It should be an inclusive, varied, accessible service. It should have community and individualised care. It should have alternative treatments and input from patients. It should see the human condition as a spectrum. But it doesn’t. And being mentally ill makes me scared that if I voice any of this, I will not be taken seriously. How can anyone ever prove that they are sane?

I deserve better. Everyone deserves better; we deserve to know that no matter what we’re going through there will be appropriate support for us. But it’s not there. And this broken system is quite literally killing people. We can’t just say fund the system either, the system needs to change. I need it to change, we all need it to change. 

I think I’m sharing this because the younger version of me wanted desperately to read it from someone else. So the core message is that you are not alone. You are not alone in the hurt psychiatry has caused you. You are allowed to be angry about it, and distrusting of it. You are allowed to choose your own care and your own path – even if others don’t understand it! (And that applies to all paths – mental illness should not be policed). Your pain is valid, completely valid, and I see you. I see you.

Sending love and support to you all today xx

Posted in autism, neurodiversity

Non-Canonical Autistic Characters

Posted on by Millie :)

Ok so this is actually a list of characters that I have decided are autistic/ neurodiverse – not actual canonically autistic characters. In fact the only media representation of a canonically autistic character I have ever seen is Sam in Atypical – and I really struggled with this series. The only book I’ve read with an autistic character is The Curious Incident of a Dog in the Nighttime. To this day I have never – I repeat, NEVER – read a book or come across a media representation of a canonically autistic character who is female or gender diverse. Ever. I only realised that two days ago while thinking about this post and it made me really sad. In many ways I feel the media is moving forwards, and I do not feel I lack autistic representation in my life because I have had the privilege to be able to actively seek that out online. But to have never come across an autistic girl in the media I consume? I’ve heard there is an autistic character in Heartstopper so I will have to give that a watch soon. I’ve realised how much I want to consume content with autistic characters, so for the first time I think I’m going to actively seek that out. 

But anyway, what’s the point of this? What’s the point of calling characters autistic? Well, in part for fun. This is simply my opinion and not a critical analysis of any of these characters. But also for representation, in a non-direct way. Resonating with fictional characters and relating to the world through them is a huge part of my neurodiverse experience, so if I can see myself in them a little more by calling them autistic, it’s really comforting. And finally also to raise a little awareness of an ongoing trend of creating autistically coded characters (characters with clear neurodiverse traits) without calling them autistic. It lends itself to another ongoing trend where people love the quirky characters on screen or in books – they even seem to worship them – but in real life people with the same traits are bullied and left behind. Recognising that I, as an autistic person, resonate with neurodiverse traits of characters begs two questions: 1 – Why aren’t characters called autistic? Perhaps because people are afraid to relate too closely to neurodiversity, it threatens them; 2 – Why do we celebrate difference in fiction but create intolerance to it in reality? 

With that being said, here are some character I (and other autistics) have decided are autistic:

  1. Sheldon Cooper – The Big Bang Theory and Young Sheldon 

The fact that the creators refused to admit Sheldon is autistic (like literally entirely based on autistic traits and stereotypes) is a source of great frustration – though it may be because they wouldn’t be able to make fun of him in the same way if he was autistic. But nonetheless, I really love seeing some of my traits on a big screen, especially in Young Sheldon, which at times seems to mirror my own childhood experiences exactly. Though it should be noted that autism is so much more complex and varied than the representation of Sheldon (and other similar characters like in Rainman). 

Some of his autistic traits include:

  • Sensory sensitivity (sound, taste, smell)
  • Different speech and intonation patterns 
  • Love of routine 
  • Difficulty dealing with change 
  • Lacking social skills
  • Hyperfixations and special interests
  • The list is literally endless 
  1. Wednesday Addams – Wednesday 

I mean the character of Wednesday is overall very neurodiverse, but the recent representation in Wednesday on Netflix was really relatable for a lot of autistic people. 

Some autistic traits include:

  • Monotone speech 
  • Less facial expressions 
  • Different way of moving (the iconic dance scene)
  • Sensory sensitivities (allergic to colour)
  • Bluntness 
  • Difficulty interpreting others emotions – ‘It’s not my fault I can’t interpret your emotional morse code’
  • Strong sense of justice 
  1. Matilda – Matilda 

I have always been obsessed with Matilda, and that’s probably at the core of why I see her as a neurodiverse character. I think I’ve read the book more than any other book (including in Spanish) and I’ve seen the musical more than any other show. I love it. As a kid I would spend hours staring at objects trying to get them to move with my mind, and I feel as though I’ve had my own ‘Miss Honey(s)’ in my life too. 

Some of Matilda’s autistic traits include:

  • Strong sense of justice 
  • The loudness in her head and different way of perceiving the world (‘But I wonder if inside my head/ I’m not just a bit different from some of my friends […] And when everyone shouts / Like they seem to like shouting/ The noise in my head is incredibly loud’)
  • Different from her peers and family 
  • Hyperlexia (can read very well very early)
  • Special interests (reading)
  • Direct way of communicating 
  • Sensory sensitivity – to Ms Trunchbull’s shouting and the TV for example 
  1. Hermione – Harry Potter 

Mentioning Harry Potter can seem a bit of a tightrope walk nowadays, but it was a very important part of my childhood and forms part of who I am today. That being said, trans women are women – always have been, always will be. So let’s reclaim the narrative further and say that Hermione is autistic! I was so obsessed with Hermione that all the new clothes I bought at 12 were based on her costumes. She was super smart and didn’t let others put her down because of it, and as someone who was often ‘ahead’ in school this was so comforting to see. Also Luna Lovegood is 100% autistic as well and I love her. 

Some autistic traits:

  • Strong sense of justice 
  • Sensory sensitivity – notices details others miss 
  • Lacks social skills (at least in first few books) and skips social niceties 
  • Special interests and hyperfixations (intense devotion to studying)
  • Obsession with learning and following the rules 
  • Hyperlexia 
  1. Phoebe – Friends 

Another one of my comfort shows, I have watched Friends more times than I can count. And the more I’ve watched it, the more I’ve related to and appreciated Phoebe’s character. Watching it again after being diagnosed was really interesting because I remember wondering for the first time about how Phoebe was showing a load of those traits I had just been asked about in my assessment. I’m not convinced she’s autistic, maybe ADHD or something else – but she is definitely neurodiverse. 100%. 

Neurodiverse traits:

  • Doesn’t care about social niceties (will just leave or say she doesn’t want to do something)
  • Unique fashion sense 
  • Sensory sensitivity (she can hear music and voices and feel spirits etc, I’m putting this under sensory sensitivity, maybe it’s an extra sense)
  • Special interests – guitar 
  • Different way of communicating 
  • Moves her hands in different ways 
  • Wandering thoughts 
  • Hyper empathy 
  • Strong beliefs that don’t bend to social expectations

So there’s five there. Is that representation good enough? No, because it’s not really a representation. Is it a bit comforting to think about, personally? Yeah, it is. Can we do better? Yeah, we can. A lot. I’m not looking for a whole series about autistic experiences. But I’d like to see myself in the media occasionally, because there’s a lot of autistic people here in the world. Just for already autistically coded characters to maybe have a moment of recognition on screen, a single mention of it, would be huge. If I – a privileged, white, verbal, cis autistic woman – haven’t seen myself represented yet, how long will it be before we start seeing the Black autistics, non-verbal autistics, physically disabled autistics represented? It might seem like a little thing if you have seen yourself on screen and in books all your life, but it can have such a huge impact. I remember crying the first time I read a book with a gay woman. It meant I wasn’t alone. I enjoy a lot of the media I consume, because I can relate to lots of different people with lots of different experiences, and I can enjoy media I don’t directly relate to. So why are people so afraid to relate to us once in a while instead? 

Thanks for reading! Sending all my love and support today xxx

Posted in Advocacy, autism, Mental Health, neurodiversity

Misogyny and The Psychiatric Complex

Posted on by Millie :)

I think nowadays more and more people are aware that sexism connects with and is compounded by other factors such as racism, economic insecurity, homophobia etc. However few people are aware of the links between misogyny and the psychiatric complex. I’d go a step further and say a majority of people are reluctant to examine or criticise the psychiatric complex at all. However this ignorance is harming the most vulnerable among us at their lowest points, and threatens to affect all of us should we experience a mental health issue (as an estimated 1 in 4 people will every year). So let’s have a brief look at the relationship between misogyny and the psychiatric complex:

Throughout history psychiatry has been used majorly to uphold societal values. As such the history of psychiatry is entrenched with sexism. The most obvious example of this was the epidemic treatment of ‘hysteria’ in women. Hysteria has been described from the second millennium BC, but it was not until Freud – a man – that it was officially considered an exclusively female disease, though it’s important to note women were disproportionately institutionalised for hysteria for hundreds of years before this. It may surprise you to know that it was not until the DSM-3 (the DSM is the leading book used for the classification and diagnosis of mental disorders) that ‘hysterical neurosis’ was deleted. 

The treatment of hysteria can be very generally described as using natural remedies to calm the nervous system until the renaissance period, notably the end of the 16th century. This is also notably where it became considered much more of a ‘female’ disease’. Around this time hysterical women would be treated by a physician interesting their fingers into genital organs to try and produce an orgasm and semen production (which raises serious questions about consent and abuse in the history of psychiatry which still pervade to this day. Some people considered suffering women to be witches or possessed with demons around this time also. For doctors at the time the uterus was their explanation for hysteria in women – claiming it caused them to be psychologically and physiologically inferior.

During the 16th century physicians and philosophers such as Thomas Sydenham, Rene Decartes, and Ambroise Pare started to recognise that hysteria was connected to the brain and other organs also, not just the uterus, but the idea of a uterine, female disease continued. For example, Joseph Raulin in the 1700s suggested hysteria was due to the fumes of big cities, so in theory it could affect both sexes but women were just weaker. 

Perhaps the most famous outbreak of hysteria is the Salem witch trials in 1692. Marion Starkey related it to more contemporary events after WW2 with the theory that classic hysteria was actually a reaction to social conflict and restriction, such as the puritanism in Salem. Note she’s the first woman mentioned. Much evidence would support that mental illness and the classification of it is intrinsically tied to the pressures of the world we live in, notably under hyper capitalist values nowadays, so I would not think it too much of a stretch to think that women during these times under such enormous pressure to conform would present symptoms of hysteria. But they were labelled as mad – their individual character was named as the problem, not as a symptom of a societal issue. And they were labelled mad by men. 

This general hypothesis of hysteria, especially during this period, seems to make sense in the majority of cases when you consider that women could be committed to mental institutions – which were comparable to jails at the time and arguably still are – by their male relatives simply for not conforming to the standards expected of them. The inhumane conditions in many of these asylums are well documented, and I personally think some treatments could be considered comparable to torture. As Angela Davis so eloquently put it: ‘Studies indicating that women have been even more likely to end up in mental facilities than men suggest that while jails and prisons have been dominant institutions for the control of men, mental institutions have served a similar purpose for women. That is, deviant men have been constructed as criminal, while deviant women have been constructed as insane.’

While psychiatry may have changed – yes, in some ways for the better and in some ways just more palatable to a modern society – its roots cannot be ignored as they are the foundation upon which modern psychiatry is directly built and this harm still exists. Let’s have a look at the current day now, through the lens of BPD diagnosis, aka Borderline Personality Disorder. 

Women are disproportionately diagnosed with BPD. There’s a 3:1 female to male ratio in the diagnosis of BPD which is quite pronounced for a mental disorder, and has led to speculation about its cause by professionals. However critics of the diagnosis have gone as far to say it is the modern day version of hysteria – a label extremely loaded with stigma that judges the emotional reactions of women. Think even of the title ‘personality disorder’ – the name itself suggests it is solely an individual issue, a defect of their character, not linked to anything in the outside world.

I write on mental health from a place of personal experience, and I will admit that because of this I am biased in how I view mental illness. There appears to be some research that genetics plays a factor in BPD for example, which would be an individual trait. However I believe it is essential that we also look at how the world as it is is unsuitable for people with that genetic component. Can we answer the question of whether that genetic and neurobiological component would present in the way it does if that individual was not subjected to trauma and systemic pressure? Perhaps not in full. But there is ample evidence that sociocultural factors affect mental illness, and that seems to be so often ignored. 

A sociocultural factor could explain why more women are diagnosed with BPD, as they often experience more pressures in the world to conform, and are more likely to be the victims of violence and assault that contributes to trauma in BPD. However the stigma surrounding BPD stemming from its symptoms may explain this too. Hypersexuality for example is a trait of BPD; being sexual as a woman is still less acceptable than being sexual as a man, so for example a woman’s behaviour may be labelled as hypersexual while for a man it’s just seen as a strong expression of his sexuality, or perhaps not even noticed at all. Likewise anger is also a symptom of BPD, and we are much faster to label women as problematic for expressing anger than we are men. So the social misogyny impacts when we start to consider a person’s behaviour as more than just odd, more than just problematic, but actually disordered. 

It would be unjust to write this article without drawing attention to the disparity in mental health care between races. Like aforementioned, psychiatry and misogyny are intrinsically linked with other social justice issues. If we ignore this intersectionality we are ignoring the full picture. For example, Black women are more likely to struggle with mental health issues, less likely to get treatment, more likely to be misdiagnosed, and more likely to be sectioned (an example of the criminalisation of mental illness, but that’s a story for another day). In fact detention rates under the Mental Health act during 2017/2018 were four times higher for people in the ‘Black’ or ‘Black British’ groups than those in the ‘White’ group, and 29% of Black/ Black British women experienced a common mental disorder in the past week, higher than for White British women or Other White women. Clearly we can see the link between the pressures and pain of racism to the experience of mental illness in Black women, and their subsequent further incarceration and abuse in the mental health industry. Likewise we can see a mirror image effect in the LGBTQ+ population – almost half of trans people (46 per cent) have thought about taking their own life in the last year, 31 per cent of LGB people who aren’t trans said the same. This is not a stand alone issue.

Another example of misogyny in the psychiatric complex is the recognition of neurodiversity in women and trans people. Early autism research was based on white boys from middle class backgrounds. Outdated tests, and a lack of understanding of how autism presents in other races and genders in the general population still result in late diagnosis or misdiagnosis of women and trans people everywhere. And here seems to be a good time to put all of this information into context – the misogyny in the psychiatric complex damages and ends lives. Whether from the trauma of institutionalisation from stigmatised diagnoses, or the pain of leading a life without understanding or accommodations, individuals and communities suffer every day. As a late diagnosed autistic myself I can attest to how painful it is to grow up being bullied, misunderstood, and confused without any path forward. I can’t imagine how different my life might have been if I had known I was autistic and had the resources to help me and my family as I navigated a world not built for me. And I had it easy! 

Yet if we take a look at neurodiversity through the lens of knowledge that gender is a construct, we can see clearly how much the pressures of the world to conform to gender norms affect people. I was taught to be a girl, while autistic. So the way my autistic brain processed that (for lack of a better phrase) was to make me mask so heavily I couldn’t see myself through it all. This is common in those who identify in genders other than male. The world taught me to be a woman and because I learnt to do it, in a system that ignores neurodiverse women, I had no idea how my brain worked. I had no idea who I was, and I was in pain. And to add a little history again, a major leader in the foundation of autism research was Hans Asperger – a man with well associated ties to the eugenics programme of the nazis. Asperger’s and autism aren’t different, but Asperger’s was used to basically say they were more intelligent, and therefore more worthy to society. These messed up roots run deep in all directions. 

However, diagnoses aren’t all great. In fact they can be downright damaging in themselves. As mentioned, a BPD diagnosis is highly stigmatised, and disproportionate in women. Having a diagnosis of any mental health issue or neurodiversity can lead to people’s experience being invalidated. If you’re labelled as mad, how can you ever convince someone you are sane? For one it can be very hard to get out of hospital and escape that system if you are committed, and extremely hard to report any abuses taking place there as they often do because concerns can simply be brushed aside as delusional, symptomatic. Any legitimate problems in interpersonal relationships can be labelled as a symptom. Any very real feeling is simply boiled down to a mental illness. Women – already more likely to experience violence – see their diagnosis weaponised against them when they try to report violence; and people with a mental illness are significantly more likely than the general population to experience violence!

The sexism in society and psychiatry doesn’t just adversely affect women and trans people though. It also affects men who are significantly less likely to come forward if experiencing a mental health issue. In 2021 men were three times more likely to commit suicide than women. And much of this can be traced to the stigma of men expressing emotions in fear of being seen as weak (translate: as fear of being seen as expressing a feminine trait). Everyone, including men, are being harmed by the systems men built. 

And yes, the modern psychiatric complex was built by men. Built on the foundations of male researchers at a time when women were denied an education, and continuing to be led by men. I’ll end on a story about how the DSM – that book used to diagnose mental illness – was created. The DSM-III was the version of the DSM that formulated how we see and diagnose disorders nowadays. It included innovations such as explicit diagnostic criteria and multidimensional diagnostic systems. But the formulation of it was hardly clear or scientific. Robert Spitzer was appointed editor of the DSM 3 and by his own admission the editorial meetings over six years between 1974-1980 were chaotic. New Yorker’s journalist Alex Spiegel reported that the psychiatrists invited would yell over each other, and the loudest voice tended to win out, while no one took minutes. People would yell out names of new diagnoses and possible checklists for symptoms, and if the cacophony in the room seemed to agree it would be typed out, set in stone. The diagnoses in that book still have very real implications for very real people nowadays, and diagnoses are removed and added in each edition following. It’s not an exact science; it doesn’t centre the lived experience of people.

If you take nothing else from reading this article I hope you remember this – sexism is systematic; it affects all of us in all aspects of our lives. But our distress, our joy, our love and our pain? That’s not just symptomatic of a system, that’s symptomatic of being human. 

Sources:

Posted in autism, neurodiversity

Neurodiversity Dictionary

Posted on by Millie :)

Here’s a quick breakdown of some terms commonly seen when talking about neurodiversity. I use many of these in my writing so want to make sure everyone understands, and also by understanding this language we can help build a world more accesible to neurodiverse people. If you have any questions about these or any other terms let me know in the comments below!

Neurodivergent

Neurodivergence means that someone’s brain learns, processes, and/or behaves differently from what is considered the norm. Autism and ADHD are most commonly associated with being neurodivergent, but the term also encompasses many other conditions and ways of braining (so to speak) such as: OCD, Dyslexia, Dyspraxia, Bipolar, Dyscalculia, Down Syndrome, epilepsy, and other chronic mental health conditions. 

Neurotypical

Neurotypical describes someone who’s brain tends to function in the way that is considered the norm, more aligned to how the world is set up. This can be seen abbreviated to NT. 

Allistic

Allistic means not autistic. It doesn’t necessarily mean someone is neurotypical, it just means that they’re not autistic. 

Functioning Labels

Some people use terms such as ‘high-functioning/ low-functioning’ to describe the presentation of neurodivergent people, especially autistic people. However many neurodivergent people don’t like the use of these labels at all. This is because high-functioning essentially means ‘more able to act neurotypical’ and erases the very real challenges in their lives, and challenges from being able to present more neurotypical when they are not! Meanwhile ‘low-functioning’ tends to write people off as having less value or ability to do anything because they don’t conform to neurotypical standards. There are many more issues with these labels, but all to say that these labels fail to encompass the experience of neurodivergent people and puts them in boxes – unless a neurodivergent person tells you it’s ok to use these labels specifically to describe them, it’s best to avoid them. 

Stimming

Stimming stands for self-stimulatory behaviour. It involves the repetition of some kind of movement, sound or behaviour to regulate a person’s nervous system. While all people may stim sometimes, it is a common trait in neurodivergent people – especially those with autism or ADHD – to stim regularly, although some people may have been trained or forced not to stim which can be very damaging. Examples may be flapping hands, bouncing their legs, humming – the list goes on and on. Unless the behaviour is immediately dangerous to the person you should never try to stop them (and even if it is, proceed with caution and sensitivity). 

Nonverbal

Nonverbal means a person does not speak. You may hear the term ‘nonverbal autistic’ or ‘non speaking autistic’. Being nonverbal does not mean a person is less worthy or less able to communicate, nor does it mean anything about their intelligence or personality; it simply means they don’t speak – and it is important that they are provided the resources to express their own experience, needs, and access education. It’s also very important within the autistic community that we uplift and listen to nonverbal autistic voices – especially POC nonverbal voices – as they are often the most ostracised. Here are three pages on Instagram you can have a look at:

  • @ galaxibrain
  • @ fidgets.and.fries
  • @ nigh.functioning.autism

Ableism

Ableism refers to the system, and as a part of that the individual actions and words, that discriminate against disabled people (many neurodiverse people are disabled, which is not a bad word). Ableism is often not understood or recognised and it is intrinsically linked with racism, homophobia, transphobia, sexism, and economic inequality. It affects the life of disabled people everyday. 

Masking

Masking means a neurodivergent person is covering up their traits. Many people learn to do this to be accepted easier, and may not even know they are doing it, and it can lead to serious burnout. Sometimes people are forced to mask in situations for their own safety.

Sensory Seeking/ Sensory Avoidant

These terms can refer to specific behaviour or the whole experience of an individual. For example someone may describe themselves as ‘sensory seeking’ meaning that they often act in a way that looks for more sensory input to regulate their nervous system and how they are feeling. This would mean they are under sensitive to input like noise, texture etc. Meanwhile someone who was sensory avoidant would be extra sensitive to sensory input, so they would look to lower how much sensory input they had. People may not even realise this is what they are doing. Some people may be sensory seeking at times and sensory avoidant at others – it’s not always the same. 

Sensory Overload

Sensory overload is when your five senses take in more information than your brain can process at that time. This can set off a fight, flight or freeze reaction which can feel really scary and like a crisis to the individual, especially if they don’t understand what’s going on. It can present in lots of different ways. The difference between sensory overload and an anxiety or panic attack is that sensory overload will usually subside/ lessen when sensory input is decreased. 

Tics

Tics commonly occur alongside lots of neurodivergent conditions. They are involuntary sounds or movements and the person cannot stop these from happening. 

Echolalia

Echolalia is the meaningless repetition of something someone has just said. Autistic people, those with Tourette’s or developmental/ neurological conditions can often have echolalia. 

ABA

ABA stands for applied behaviour analysis. It’s a therapy that many autistic people, especially children, are subjected to to try and modify their behaviour so it is seen as safer or more acceptable. The problem is it often teaches autistic kids to mask and many people have come out later in life to speak out against the trauma they experienced from ABA. There is a lot of pushback from the autistic community on this kind of therapy being used, but the conversation is complicated as many parents of autistic kids often have no other choices when worried about their child’s safety or where their children will go everyday. This is not a field of great knowledge for me so once again I would refer you to research autistic viewpoints if you’d like to know more about ABA (fidget.and.fries on Instagram ein particular has a downloadable file of all their extensive writings on ABA).

Self-diagnosis

Self-diagnosis is a term often seen with autistic and ADHDers. It means that they have not chosen to or been able to pursue an official diagnosis from a ‘professional’, but that they recognise themselves to be neurodivergent. Many people do not have equal access to professional diagnosis – and the diagnostic system itself is very outdated – so they have to self-diagnose. It’s important they are respected and listened to regardless. Some people may also choose not to pursue an official diagnosis because they are worried about the repercussions of this. 

Person-first language vs identity-first language

Identity first language puts the condition of a person first – for example ‘autistic person’. Person first language puts the person first – for example ‘person with autism’. They’re are arguments for both. Some people see person first language as emphasising the fullness of a person without defining them by their condition, while identity first language can be seen as recognising how the condition is an intrinsic part of a person and not something to be ashamed of. A large part of the autistic community in specific is in favour of identity first language, however it will always come down to personal preference, and each person’s preference should be honoured when referring to them specifically.