Category: autism

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 I was discharged from the service – I took that as a message that if I had an opinion on my care, my care would be withdrawn from me.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.

Posted in autism, Personal Growth

Guide for Autistic Travellers

Posted on by Millie :)

This summer I embarked on a two month solo trip around Europe as a female identifying autistic teenager – and it was wonderful. It was made even more wonderful by the fact that some of it was awful (I see the bad moments as adding more depth to the whole experience). So I thought that from my experience I would make a little guide to travelling for my fellow autistic people! Firstly a little disclaimer – this post is based on my experience travelling in Europe during the summer months; there may be information that does not apply to travelling at different times or different areas of the world. Also not every autistic person’s experience of the world will align with mine, so please find the information you find relevant and feel free to ignore the rest. With that being said, here’s my tips:

In London, ready to embark on the journey

Consider Your Companions

Personally, I find social interaction to be draining, especially when in unfamiliar situations. I am also pretty independent, so for me doing the majority of this trip on my own was the best option as it meant I could go at my own pace and organise my own days without having to balance that with someone else. However, I did have my moments of overwhelm and difficulties so it was really important that I had people (notably my parents and sponsor) on standby who I could call to help me in those moments. 

There is a lot to think about when travelling and a lot of new environments to deal with. It’s worth considering whether you think you will be able to handle this on your own or whether you would get more out of the experience by having someone with you to help manage this. If you do need someone, remember that is totally acceptable! It’s about getting the best experience for you. However I would recommend thinking carefully about who you bring. It needs to be someone you are comfortable being around for long periods of time and who you are comfortable expressing emotions around (as there will almost certainly be emotional moments along the way). 

If you are like me and think that you would prefer to travel alone, but also want to have some shared memories along the way, you could always invite a friend or family member to come and join you at one location. This is what I did and it worked really well. It meant I got to explore a few places with someone, but our time together was limited and we didn’t have to manage lots of travelling (and so scheduling) together. It made those experiences feel more special for me personally. 

Do whatever feels right for you – but take some time to consider this in particular as it’s one of the most impactful parts of travelling.

A la playa en Barcelona

Sensory Considerations

Something I underestimated before this trip was the variation of sensory experiences in different places. It is completely manageable, but it might have been helpful for me to be more aware of it before. Firstly, travelling in the summer months meant it was often really sunny. Before this trip I actually didn’t think I was an autistic person that was affected by light very much – but I soon realised I most definitely was (and that’s a really helpful thing to know now!). I think because I was in a new place, my sensory reactions were sometimes more sensitive, so that’s why I’m really glad I got a pair of good sunglasses before I went. I wore them everywhere and they made everything so much more pleasant. So I would recommend investing in a pair of good sunglasses (and if you wear prescription, possibly getting a back up pair) before going travelling. 

Next up is smells – different cities have different smells. This was both very surprising and not surprising at all. I got more used to it as the trip progressed but in the first few cities it was definitely on my mind a lot. If you are someone that gets affected by smells I would recommend bringing some essential oils you like to smell or even getting a nose plug of some kind for travelling as it’s a part of new cities that can’t really be avoided. 

Likewise, every city had different sounds. I had my airpods with me the whole time and had a podcast or music playing every time I was out and about to help me manage this. I actually spent a while beating myself up over this, thinking I wasn’t being ‘present’ enough simply because I couldn’t live up to the idea that in order to be present in a museum, for example, I had to stand there in silence while footsteps echoed around me. So my note here is for the autistic people who need controlled sound playing to engage with the world – that is totally ok! Whatever you need to make the most of your experience is totally ok! I also had my loop earplugs with me for when I wanted to take in some of the city noise but not be overwhelmed. This kind of earplug is really good because you can get different kinds to filter out different levels of sound to suit you. Considering bring ear defenders could also be really useful for dealing with sound. 

Next for sensory issues is a bit of an odd one – pillows. I stayed in a lot of different hotels and hostels and I can say that without a doubt the thing that varies most between them all was their pillows. I had no idea this would affect me, but it did. So if you think different kinds, shapes and heights of pillows could be weird for you, please consider bringing your own. I packed really lightly but if I had to recommend one larger thing to bring it would be a pillow; even a blow up one that you are used to the feeling of. 

Finally, consider the clothes you bring. I know personally I only really wear clothes that have a comfortable texture and feel for me. However when I was travelling I found it even more important than usual that I was wearing comfortable clothes, especially in the heat. I also found that with so much other information and choices in a day, choosing an outfit was much easier when the majority were variations of the same outfit. For example – I had four different tops that were all the same but different colours to match with four different pairs of cycling shorts that were all the same but different colours. I just found that really helpful.

In a space pod for the night!

Accommodation Choices

It’s really tempting while travelling to choose a shared room in a hostel because it’s the cheapest option, or because you feel like that’s what you should be doing for the ‘travelling experience’. This is your reminder to always, always choose what’s best for you and not what’s the easiest option or what you feel you’re meant to do. For the majority of my trip I had my own room and it was 100% the right option for me. I needed that space that I could retreat to and reflect in and not feel like I was ‘on’ all the time. I got single rooms in hotels, air b&b etc mainly because this was often a lot cheaper than getting a single room in a hostel. However if you want to also have the option of more social events and interaction then getting a single room in a hostel would be a great compromise if you’re someone like me that also needs their own space!

 I did stay in hostels for a few nights, and I’m glad to have had that experience, but I found it much more draining so I’m also glad I didn’t do it for the whole trip, and had my own room immediately afterwards. It was 100% worth the little bit of extra money to have my own room. Whatever you decide I’d just recommend you look into it carefully, read all the reviews, and be clear on what you need.

Next up on my accomodation advice is to book in advance. It might sound fun being spontaneous and just booking in when you get somewhere, but if you are travelling in summer like I was this is not only expensive but can be nerve wracking when everywhere is sold out. If you have your accommodation booked in advance it’s just one less thing you have to think about at the time, which might not seem like a big deal right now, but when you’re faced with travel tiredness and some other issue to solve, it’s a huge relief to have the basics sorted. I used booking.com’s app for nearly all my bookings so they were all in one place and easy to sort through; plus it meant I only had to get used to one interface. 

Finally, in terms of food – if you’re worried about the unpredictability of food at all then I would recommend finding places to stay that have facilities for you to make your own food. This also helps save money when you’re on a budget.

At Teufelsburg, Berlin

Where To Visit

Again, when choosing where to visit (both in terms of places and what to do in those places) don’t be swayed by what you feel you should be doing. I didn’t go to a single club or bar while travelling and I do not feel like I missed out at all, because I was happy with what I was doing. 

In terms of places I personally found Venice very overwhelming in the summer with the large volume of people in small streets. Turin on the other hand was a beautiful, small Italian city that was quiet in the summer. Look into what kind of vibe you want and what places are like at particular times of the year (I much prefer visiting Rome in the winter for example). Guide books and the many travel blogs online will often be able to give you recommendations for quieter or less busy places to visit as well if too many people are overwhelming (Teufelsburg in Berlin was truly amazing). Basically – travelling is a personal thing. Make personal choices. 

I found travel days to be the most draining, and although easier because it was planned, there was a level of getting used to each place once I arrived. If you think having to adjust to several different places in a short period would mean that you enjoyed them less, then consider staying in each place for more extended periods of time. That way you can settle in and explore each location at your own pace. 

Finally, if you have a diagnosis and are in receipt of any official disability support (DSA, PIP etc) then take proof of this with you because loads of attractions give reduced or even free entry! I saved €70 in Barcelona in a single day so it really is worth it. You can also get someone else free with you at a lot of places! Disneyland in particular had amazing disability support for free – I got a pass that meant I could skip queues with up to 4 people and had my own place to stand for the parades. It really meant I could enjoy the day. But it’s not just big attractions like that – churches, museums, tours etc often have disability reductions.

At Prague Castle

General Advice

  • Bring a portable charger and keep it charged 
  • Have emergency cash 
  • Have a small across body bag to put valuables in 
  • Get medical insurance – GET MEDICAL INSURANCE 
  • There are shops everywhere – you can buy what you need, so don’t panic if you forget anything
  • Have key contacts and information written down, including your hotel addresses and a photocopy of your ID kept separate to the original
  • Print off a card with ‘i’m autistic’ in different languages if this makes you feel better 
  • Have more underwear than you think you need
  • Bring a water bottle and remember to stay hydrated – it’s often the basic stuff we forget first 
  • Take breaks if you need to and only do as much as you want to. You got this!! 

If you have any questions or extra tips please let me know below! Love and support to you all xx

Posted in Advocacy, autism, Mental Health

Diagnosis – Good, Bad, or Dependant on the System?

Posted on by Millie :)

Validation:

It can be very hard to access treatments and be validated by ‘professionals‘ within this system without a diagnosis. Budget issues and a mental health system based in oppression that seeks to produce productivity rather than healing and often doesn’t recognise its intrinsic links to all other aspects of capitalist society doesn’t help this. However, more importantly, without a diagnosis it can be hard to validate ourselves – to give ourselves permission to display certain symptoms, feel what we feel, and believe that it’s real.

Getting a diagnosis can be a validating and liberating experience for many people – my autism diagnosis certainly was for me. It helped me understand myself, put my entire life into context, and connect with other people going through similar experiences. That was incredibly useful with all my diagnoses – finding people going through the same thing and learning how they were managing in a world often not built for us which helped me find ways to define and facilitate my own healing. Community truly is a powerful force. It teaches us that we are not alone, and is one of the most invigorating tools in supporting mental health; my diagnoses are helping me find mine.

But we must ask the question – why do we lack validation without a diagnosis? Why have we not been taught validation and community by the systems surrounding us? If human experience was universally understood as fluid and acceptable, would we need diagnoses at all?

Stigma and Stereotyping:

However, diagnoses have also been used as oppressive tools throughout history, and being given a diagnosis can be a terrifying experience. For example women could be put into mental institutions if their husbands thought they weren’t living up to their duties and this was justified under the label of hysteria. Nowadays Black women are significantly more likely to be diagnosed with BPD – this may be a misdiagnosis of a neurodivergency (chronically under recognised in Black people) or due to how their traits and emotions are perceived so different within the system. Black people are also four times more likely to be detained under the Mental Health Act in the Uk – a hugely oppressive tool that twins criminal incarceration.

It may feel like a condemnation to receive a diagnosis due to preconceived notions of stigmatised mental illnesses, and lack of care options. Sometimes it can seem like a lifetime of suffering and inevitable failures lie ahead. It may even be harder to be taken seriously within the system – especially in psychiatry wards where any legitimate complaints can be brushed off as ‘symptoms’. Telling family and friends may elicit negative reactions due to their preconceived ideas, regardless of how positive the experience was for the individual

Stuck in a Box:

Although it can be liberating to understand your behaviour through the lens of a diagnoses, it can also be challenging when dealing with others and interpreting your own experience. It can be difficult to know where you start and where the illness ends, or to what extent you should view yourself as your illness. It can be difficult to know whether an emotional reaction is ‘natural’ or a symptom or a potential warning for future issues. It can be difficult to be heard and seen as anything but your diagnosis and your experiences as anything separate or unrelated to it by others.

Diagnosing a mental illness is not straight forward. No one person presents the same, and often two psychiatrists will have completely different opinions leading to misdiagnosis/ confusion for the individual trying to grapple with many opinions and find understanding.

And yet once given a diagnosis we are often stuck in a box or a more rigid understanding of who we are and how me must think and will behave. Does that seem logical? It doesn’t to me. But it’s understandable within a system that looks for easy processing, and profit – both achieved through the over medicalisation of human distress. 

When the DSM was first released in 1952 there were 102 diagnoses in it. By 2000 there were 365. This has since reduced again – but you can see how inexact and dramatic the medicalisation has been.

Nonetheless, getting a diagnosis, finding community and comfort it in, can be a very positive experience. My autism diagnosis certainly was for me, and being able to say I’m bipolar helps me feel whole and proud of everything I’ve been through. But getting those diagnoses, navigating conversations, therapy, and life with them has been challenging and complicated. And I am privileged in many ways. Bottom line – receiving a diagnosis is not something to be afraid of, and if your experience was good then that is amazing, and valid! But negative experiences are just as valid too. Perhaps even more so because they often fall on the more marginalised. And everyone’s emotions, pain, and trauma are valid with or without a label. We deserve a society that teaches us that.

Sources

  • Sedated: How modern capitalism created our mental health crisis by James Davies
  • verywellmind.com 
  • mind.org.uk
  • Phenomenology of Borderline Personality Disorder, The Role of Race and Socioeconomic Status, Natacha M. De Genna, PhD and Ulrike Feske, PhD
  • My brain
Posted in Advocacy, autism

Ugly Autism

Posted on by Millie :)

As always when talking about autism, I want to remind everyone that autism is not a mental illness. It is a type of neurodivergency; this basically means as autistic people our brains think and process information differently to the ‘norm’ that is expected in the world. However autistic people are more likely to suffer with mental health issues, largely in part to the fact that we are living in a world that isn’t built for us. I’ve talked about an overview on autism acceptance before – which you can read here – but today I wanted to discuss the complexity of an autistic experience and how as more people get involved in autism acceptance and advocacy (which is an amazing thing that I am thrilled to see!) we must keep in mind the spectrum of experiences and therefore the complexity of the necessary solutions.

Sometimes my autism isn’t pretty. I can still fit into the world as I am expected to, but that comes with effort which often goes unseen or under-appreciated. I can do this reasonably easily compared to some, and this is in part due to other aspects of my identity (such as my race) and the supportive people who surround me. You can view this as lucky or not; I think in a way it is unfortunate. It’s unfortunate that I have to manipulate the very essence of the way I think in order to fit into systems I often have no desire to engage with in the first place. I think it’s unfortunate that we can even frame this as ‘lucky’ because that just points to how painful life is for those who can’t, and how this pain is worse than the struggle of concealing one’s true self. While I do frame my autism as my superpower sometimes, I do not believe in the rhetoric that it is a blessing – this also lends to the rhetoric that it could be a tragedy when in reality it just is what it is. I frame it as my superpower personally because that helps me cope with its challenges, and because being autistic is so central to my identity that embracing it in a society that often doesn’t is radically self loving for me. My mental health issues are not the same as me being autistic, but since autism affects how I process everything they are of course intertwined and I have no doubt that being autistic in a world that isn’t has been part of how bad my mental illness has gotten and how confusing it has been to understand. In particular I think my early experiences of mental health issues (before they developed into a clear mood disorder of their own) were heavily intertwined with my autistic experience.

So why am I telling you all this? To give you the smallest cross-section of just one person’s autistic experience, and the complexity of even trying to begin to comprehend that experience, so that you might begin to grasp how neurodivergency and the way it is approached by society is not something that can be easily defined or explained. And that is essentially the point of this post. There are more conversations happening around neurodivergency now then ever before – and that is a joyous and wonderful thing! But these conversations cannot be dulled down to a single Instagram post, or a single profile of autism – which threatens to be the most easily palatable representation of autism. Think of how mental health awareness is sometimes boiled down to self-care, bosses offering a free yoga class to their employees, and pity for the people who can’t socialise but can still just about get through a days work. This kind of awareness fails to recognise or help those suffering in ways that are uncomfortable for us to hear about, or impede how they might function in the systems they are expected to – it doesn’t help the person who has to take a year off work, nor the person who has to call an ambulance because they are convinced they’re dying, nor the person who lashes out at others with angry words because they can’t deal with their inner turmoil. I don’t want a similar pattern to happen as we see more autistic and neurodivergent awareness and representation. We can’t afford to ignore the messy parts of autism that might make some people a bit uncomfortable, or the fact that many neurodivergent people can’t (or don’t want to) participate in traditional capitalist structures that aren’t set up to support them. As there is more awareness, we must show the full array of autistic experiences – from all races, with comorbid mental health issues, different traits, physically disabled autistic people etc etc.

Autism and neurodivergency can’t become something trendy, like a new kind of personality test for CEOs to try and enhance their team and their diversity. They just need to become tolerated, known, understood. Because neurodivergency isn’t always palatable; sometimes it’s messy and it’s different and we have to make sure we don’t run the risk of autistic and adhd people who can more easily fit into the societal expectations (and who want to, because not everyone does) getting ahead and heralded as some liberal caring symbol for employers – for example, while others continue to be ignored. 

Posted in autism, Managing Mental Health, Mental Health, Personal Growth

How to Make a Happy Kit

Posted on by Millie :)

I still struggle greatly everyday with my mental health, and that can be enormously frustrating. It can also make it feel like the smaller things I can do to help myself are useless in the long run. However, I know this isn’t true. I know that when I add up all these little bits and pieces (like writing and walking for example) they do make an impact. And, yes, sometimes it’s a very small impact – but I know how much more hopeless and desperate it would make me feel if it wasn’t there. One of my favourite things I ever did to help myself manage my mental health was to make a ‘Happy Kit’ (as I call it). The great thing is that it’s totally unique to me and my needs, so I thought I’d share a little guide on how to make your own Happy Kit to suit you. I really love mine and I would recommend that everyone make something like this, because we all have mental health and challenging days – or simply just bored days. In my case it has loads of stuff in it to help me manage my anxiety, depressive episodes, sensory overload, and boredom; I keep it in my school bag at all times. So here’s how I made it:

My ‘Happy Kit’ is almost like a summary of all the tools I’ve gathered over the years to help myself. However, before you decide on the specifics of what will be in your kit, decide how you want to use it. Do you want it to be a box full of stuff that will keep you entertained when you’re bored at home? Or something you can always keep in your bag? Or maybe it’s something you use to help you wind down in the evenings? Once you’ve decided this, you can then choose what container you’re going to keep it in. I keep mine in a black makeup bag with sparkles sewn into it – I like the texture and the way it catches the light. You might choose to keep yours in a box or on a shelf in your bathroom cupboard for example.

Before I go further, here’s an overview of the contents in my own Happy Kit to give you an idea of what to keep in mind when making yours:

Me and My Happy Kit
  1. Fiddle toys – they help me focus in lessons, ease anxiety, and remain grounded during sensory overload. I have several different kinds with different textures
  2. A list of distractions – I have so many different activities on this list! And they range from things that are easier for me to do when I’m feeling low, more creative for when I’m hyper, and calming for when I’m anxious. I have this list because I’m learning that if I can direct myself towards an activity, it eases how I feel, but sometimes I can’t think of anything to do, so I refer to the list. And if I still can’t decide, I can always just pick a random number and do that activity!
  3. Gemstones – I’m not entirely sure if I believe gemstones work, but I do believe they can act as a placebo at least, and I find it very calming to hold them, if only as a way to remind me to try and bring myself back into a more neutral place mentally
  4. Items with sentimental value – To remind me of good times and the love of people in my life
  5. A toolkit list – This is a list with easy to follow steps that summarise particular tools I’ve learnt to help me manage and think more clearly, like how to accept emotions and reduce judgements
  6. Sweets/ mints – Sometimes I have Rescue Remedy sweets in my kit and sometimes I just have normal sweets, but something that tastes nice and I can suck on is just pleasant and calming for me
  7. Something smelly – not smelly in a bad way! Just something that smells pleasing to me, like lavender or essential oils or a mini perfume. Sometimes because they’re calming scents, and sometimes just because they make me feel fancy. As someone who’s autistic smells can also help when I am sensory seeking (kind of the opposite to sensory overload/ avoiding such) in a really simple way
Some of the things in my happy kit

Obviously all of that is specific to what helps me, but it might give you some ideas. If you like fiddle toys or nice textures then put something like that into your kit. For me they represent something calming and soothing to me that I can also use to engage my brain. I’d definitely recommend you to make a list of distractions/ activities regardless of what you’re using your Happy Kit for – you can tailor it to yourself but it comes in really useful in lots of situations. For example if you are making your kit to help you relax in the evening it could have a a list of ten things that you can do to help you relax and you could pick one each evening. If it’s to calm anxiety, then put down a few distractions and a few activities that might calm your anxiety – like breathing exercises, colouring, or reading a book perhaps. And if you’re making your kit for when you are bored then throw down a load of different activities, and make sure to include some you might not usually do (for example, writing a song even if you’re not musical). My list includes a mixture of all these different things! Here’s some of the things on my list:

A picture of some of the activities on my distractions list

I hope this has inspired you to think about making a little toolkit for yourself (or even for someone else). Please feel free to ask for any advice or share your ideas for your own happy kit. Sending all my love and support. Xx

Posted in Advocacy, autism

A Guide to Autism Awareness Month (By an Autistic Girl)

Posted on by Millie :)

    April is autism awareness month, so you might well come across information floating around about autism online. For many autistic people, especially autistic advocates, can find this month difficult or have mixed feelings around it – not all the information circulating will be correct or portray a positive narrative, and this can be frustrating, stigmatising, and exhausting to correct. So here is a short guide on how to navigate autism awareness month for autistics and neurotypicals (people who do not have autism and are not neurodivergent) alike:

    The Ground Rules

    Firstly, let’s lay some ground rules for autism awareness month – the stuff you really should know. When you read something about autism online, do not automatically assume it’s true. If it’s written by an autistic person, then it’s generally trustworthy. If it shows autism as a problem to be fixed, or a desperate life, then it’s not to be listened to. And if it comes from ‘Autism Speaks’ then completely ignore it (more on that later). Next, make sure you are not correcting autistic people on their own experience, or trying to speak over them. Instead, uplift autistic voices – and all autistic voices. We are as diverse as the world, and we all have value, so make sure you’re paying attention to LBGTQ autistics, Black autistics, non-verbal autistics, autistics with higher support needs… all of us! Finally, don’t use the #actuallyautistic hashtag if you’re not autistic, it’s a hashtag we use to find each other and to identify posts by autistic people.

    Acceptance not Awareness

    While becoming more aware of the diversity and lived experience of autistic people is amazing, and helps to de-stigmatise autism, it’s not enough. Furthermore, sometimes the idea of awareness can become a connotation of a problem that needs to be solved or cured, which autism is not. So during this month, you may see it called ‘autism acceptance month’ instead. That’s because what autistic people really need is acceptance. More than that we need to be accommodated and valued in society, because every single one of has worth no matter where our traits lie on the spectrum, and when accommodated to we can do so much. So please, make sure that this month you are also thinking about and working on your acceptance and accommodation of autistic people. If you want to read more about why I think autism is amazing, please read my post ‘Autism is My Superpower’ here.

    All Year Round

    The fact is that autistic people are always autistic – all year round. That means that you cannot only work on accepting autistic people during the month of April. Including us, accommodating us, appreciating us and loving us is a full time job. And it’s important, maybe even paramount, to note that accepting autistic people isn’t just about accepting those who have a diagnosis or are public about that diagnosis. Many of us can’t be open with our diagnosis, or are uncomfortable about being open with it (which is why we need your help to de-stigmatise autism). Many people don’t even know they are autistic. So what does that mean for you? It means accepting the weird kid who only talks about the same few topics or can’t make eye contact, and saying hello to them, regardless of what response you might get. It means not laughing at the way in which someone flaps their hand or the odd noises they make. It’s about being sensitive to the person who finds light and sound overstimulating. It means accommodating the quiet girl, even when she can’t talk at all. It means caring.

    No Autism Speaks

    You may have heard/ hear about Autism Speaks’ light it up blue campaign, supposedly in support of autistic people. However autism speaks have been hugely damaging to the autism community, portraying autism as a thing that destroys lives and families, and something that needs to be solved. They also do not help autistic people in a financial sense – only a tiny portion of their budget (I believe 4%) actually goes towards autistic people and their families, while their CEO receives an obnoxious amount. Furthermore, not one person on their board actually has autism, which is an outrageous sign that they do not listen to us. So instead of lighting it up blue, please light it up red, a way we are combating Autism Speaks, and use the rainbow infinity symbol instead of the blue puzzle piece of this organisation.

    A Guide for The Autistics

    This month might get overwhelming for you, especially if you are trying to correct information online or advocate a lot. So this is my reminder for us to check in with ourselves and allow ourselves time to rest and do what we enjoy as well. If you are feeling worn out maybe reach out to someone who knows you well also and ask them for a bit of extra support. You are under no obligation to do anything this month if you don’t want to. And maybe while everyone else is working on their acceptance of us, we can also try to accept ourselves. It’s something we can struggle with as autistic people. But we are so valid, and honestly really awesome.

    Thank you so much for reading. If you have any questions please do drop them in the comments, and feel free to get in contact. Sending all my love and support!

    Posted in Advocacy, autism, Personal Growth

    Autism is My Superpower

    Posted on by Millie :)

    I’m autistic. Having autism in a neurotypical world is not easy because generally the world isn’t built for us and proves to be confusing, but for anyone struggling with their diagnosis/ symptoms (and any neurotypicals unclear on the individual nature of autism) I want to make it clear that having autism isn’t a defect. Nor is it a mental illness. In fact, it can be a bonus in many situations, and when accommodated to autistic people can provide new perspectives and skills to the benefit of others. I, for one, like to think that my autism is my superpower, and this is my personal experience:

    I learnt to ‘mask’ my autism – consciously learning how to act and react from other people’s behaviour; having to put effort into learning social rules that came naturally to others. Masking can be exhausting, so I know it’s essential that I take breaks and find time for myself, but like a superhero in a costume, it can also be powerful. How? Because my passion is theatre, and when I become the character I act out on stage, I am easily able to slip myself into their shoes – I know how they would behave and why. It comes effortless to me. The misconception is that autistic people are like robots and can only slot into certain careers. In reality we are varied like everyone else, and our uniqueness is incredible. We exist in every identity there is: every race, every gender, every sexuality, as parents and children. Our variety is often overlooked.

    My increased sensory input is a key feature of my superpower. I observe more, hear more, taste more. This translates to a benefit in so many situations. You don’t know your train time? Don’t worry, I glanced at the board quickly and noticed it. You’re lost and don’t know the way back? Don’t worry, I spotted landmarks along the way, I know where we’re going. You’re trying to remember where you put your glasses? Never fear, I spotted them. And if we’re thinking about sound and music, my greater sensory input comes to my aid once again – that along with my ability to spot patterns as part of my autism, and my synaesthesia (which is far more prevalent among autistic people than the general population). When I hear a piece of music, it is alive to me. It is full of colour, I hear every layer of the rich instruments, and I can see the patterns the notes are forming. If I want to then play that piece on piano, I need only translate the pattern onto the keys – give me a bit of time and I can paint the picture I hear all by myself. This is my superpower. 

    Not to mention the fact that I am quite simply neurodivergent. I think experience the world in a way that is different to ‘the norm’, or rather the majority. Why is this a feature of my superpower? Because I can come up with new ideas and perspectives that may have been overlooked or not thought of at all. In certain situations this can become the way I overcome challenges or help others to do so; in the right combination my divergent thinking could be innovative. Us autistic people have a place in this society, no matter where our traits lie on the spectrum, and if we are accommodated we may even be able to offer solutions, certainly valuable contributions at the least. 

    Like a superhero may have an emblem, sign, or symbol, I have my stims. By stims I mean self stimulatory behaviour. Why is this so amazing? Well, it indicates to me how I am feeling (different stims, like tapping my fingers on my palm or twirling my ankle, correspond to different moods). Not only this, but should I start to feel an uncomfortable emotion, stimming freely can help calm me down. There’s a lot of people out there that don’t have something so simple in their toolbox, so this is powerful to me. It’s also such a pure form of expression, and can even help me release my creativity, tapping into my flow. Furthermore, my stims evolve over time – hitting my head morphed into covering my head and now I need only put on a hat to feel at home. How awesome is that? 

    This barely scratches the surface of my positive autistic experience, but I hope it has enlightened you. Autism is not a bad thing – quite the opposite. And the beautiful part of it is that no one autistic person’s experience is the same as another. We have a place in this world, and we’re not going anywhere, so the more that neurotypicals begin to understand and help us meet our needs, the more we can give.