Posted in autism, neurodiversity

Non-Canonical Autistic Characters

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 Happy Notes, Managing Mental Health, Personal Growth, positivity

Gratitude Practice

How often do you take time to stop and appreciate life? Even when it feels like everything’s going wrong? It’s not a test, I just want to encourage you to honestly consider how often you purposefully notice the good in the world. How often do you pause? You might be the kind of person that never does this, or the kind that laughs it off as some more mindfulness nonsense (I know that word can get on my nerves sometimes). Or maybe you try but it’s too difficult, or you feel like you aren’t present enough, aren’t appreciating things enough, so you might as well not try because you’re not getting it right. Maybe sometimes you do this a lot and other times not at all. 

Personally I make a list at the end of every single day with things I’m grateful for. And some days I really deeply feel that gratitude – somewhere indescribable in my core. And other days I’m more like going through the motions. But I make this list every day, and I have for the last 617 days – since I started addiction recovery. I guess that’s kind of been helpful for motivating me to continue with the gratitude practice because I do kind of see it as a life or death thing personally – I either do the things that keep me sober or my life takes a serious turn for the worse. However, that’s not the only reason I do it; I’ve genuinely come to love what practising gratitude in specific (such a small thing) does in my everyday life. And looking back on my mental health journey I’ve realised it became an instinct for me to practise gratitude very early on – though I didn’t realise that’s what I was doing. And that’s interesting. 

When I started to recover from my first full-blown, 9 months long, very-not-good depressive episode, I started this little practice for myself. Every day I recorded: 3 good things I noticed in the world that day, 2 good things I did that day, and 1 good thing someone else did for me that day. They could be as small as I ate some food, or got out of bed (which are not always small feats at all), or someone said hello back, the colours of the leaves are changing on the trees etc. Sometimes they were much bigger than that of course, but actually the best emotional rewards came out of finding those tiny little things to list every day, especially on the days it felt like there wasn’t anything good in the world. I realise now I had created for myself a sort of gratitude practice. 

This came about because at one of my very lowest points, in a desperate attempt to help myself (I was essentially in a headspace of ‘this has got to work or there is no hope left’) I came up with the idea to write two lists. First I wrote a list of all the good things in the world – with the caveat that I didn’t have to think they were good at the time – because nothing seemed good at the time – I just had to have thought they were good/ fun/ not utterly miserable at some point in time. The second list was all the things I would never get to do if I wasn’t around anymore. And something incredible happened while I was writing those lists. Half way through writing the first list I started to realise I wasn’t just remembering things that used to feel good, I was actually starting to feel a faint sense of happiness about these things in the present. Half way through writing the second list I realised I wasn’t listing things I would never get to do, I was listing things I wanted to do in the future. I could actually, faintly, see a future and feel joy. 

It’s interesting to me looking back for several reasons:

  1. My natural instinct when searching for something to help me was to practise gratitude
  2. Practising gratitude had an immediate effect 
  3. Despite not wanting to do many things, I wanted to continue to practise gratitude 
  4. Practising gratitude consistently actually started to change my perspectives on the world and allowed me to be able to take a step back when things got tough again. It essentially created and trained a little voice in my head that no matter how bad things got was there whispering that it would be ok, that not everything was awful

My instincts for survival and healing are fascinating to me because as someone who slipped through cracks of the mental health system, I find them a practically spiritual thing that came to me in depths of hurt. Of course that might not be the way you look at it, and gratitude has been proven in multiple studies to be a powerful tool, but for me the fact that I automatically reached for gratitude suggests that there must be powerful forces of ‘good’ and love in the universe. 

Fast forward a few years and I found myself in addiction recovery, where practising gratitude daily is a foundation of healing. That’s where I realised that what I had done those years before in creating those lists was practising gratitude. So I started doing it again, listing things I am grateful for every day, and in fact sharing them with others – another very healing exercise. Being grateful doesn’t mean we ignore the hurt and wrongdoing in the world, nor does it mean we have to settle for the way our lives are currently. But it does allow us a stable basis to build from; a calm to return to. And it really increases how wonderful the bright things in life feel!

From a scientific standpoint gratitude has been proven to yield many benefits. Here are just five:

  1. It improves empathy and reduces aggression 
  2. It helps improve sleep 
  3. It boosts self confidence 
  4. It strengthens relationships with family, friends, and romantic partners 
  5. It aids the immune system 

Personally it grounds me, makes me feel connected to the wider world, helps me feel more peaceful and content, and takes me out of my thoughts. 

I encourage everyone to try practising gratitude daily for a few weeks, and see how it affects you. If a few weeks seems like too much, then just start with today. The very simple way to practise gratitude is to simply ask yourself the question: What am I grateful for? Allow any thoughts, images and feelings to arise, and try not to judge them. It might help to take a deep breath and sit somewhere quiet – or it might help to have something to entertain your hands like a fidget toy, depending on how your brain works (it’s stuff that gets said a lot, I know, but it is actually helpful). 

Here are some questions to ask and ways to record your gratitude practice:

  • You could try writing out a list of 10 things you’re grateful for; that’s what I do most often
  • You could do a mind map 
  • Illustrate some things you’re grateful for 
  • Make a moodboard on pinterest or from magazine clippings 
  • Ask, what is a kind thing someone else has done for me today? What are the kindest things people have ever done for me?
  • What brings me joy? What used to bring me joy as a child?
  • What makes me smile? 
  • What are the three most important items to me?
  • Who are influential people in my life?
  • The possibilities are limitless 

I really hope you enjoyed reading this blog and that you give some gratitude practice a go! Best thing is it’s not a new skill, it’s something you’ve likely felt many times throughout your life – all we’re doing is tapping into an emotional tool with intentionality. Let me know your experiences in the comments below!

Sending love and support to you all today xxx

Posted in Advocacy, Personal Growth

Being Vulnerable

Thought I’d share something a little different today. The text below is directly copied from ruminations in my diary about being vulnerable (specifically online). Half formed thoughts and unanswered questions, which is kind of the point of what I was writing about – allowing an ‘unfinished’ image of self to be seen. I’ve thought about it more and this quote in particular resonated with me: ‘Vulnerability is the least celebrated emotion in our society’ ~ Mohadesa Najumi. I’m a growing, changing person whose views will inevitably change, but I don’t think I want to live holding back because I may think differently in the future. All we’ve got is now right? So this post is a little less about mental health, and more about the process of learning to be a mental health advocate (if I can allow myself that title!). Please enjoy this copy of my wandering thoughts:

‘I think I naturally ‘overshare’ a lot, though keep some things very hidden. And it’s part defence mechanism, but also part not understanding what’s meant to be hidden. I don’t see my ‘personal life’ as any more personal or precious just because it’s mine. It doesn’t really bother me if more people know, in fact sometimes that makes it more special to me. But is that just a need for validation? Or am I broken, or missing something – because I don’t seem to understand the idea of personal life in the way the messaging of the world does??

And also, of course I’m afraid of judgement. The biggest fears being that sharing I’ve had problems with alcohol – for example – will stop me getting a job in the future. But if no one speaks openly about these things then they remain something to be feared or judged. Right? Social media is so often used to show the ‘end product’ of healing, discovery, creation etc… the polished, acceptable version. But that’s not life! I’m ok being a flawed, growing person. I have to be because I always will be. I want to show that too. 

But is there a right and wrong way to do that? Or is that just more expectations? Or is social media in fact not suitable for that? Of course it will always be just a snapshot of life – does that mean we cannot snapshot the vulnerability too? Indeed – what is vulnerability? I feel we live in a culture where we are afraid to make mistakes, especially in changemaking settings. But mistakes are a part of life. It’s all very confusing, but I don’t want to be afraid of the journey of figuring it out. I choose to move forwards with love and acceptance.’

Posted in Advocacy, Managing Mental Health, Mental Health

Reframing Healing

We receive a lot of messages, consciously and subconsciously, about what healing is. I have my own opinions, some of which will be evident in this post, but I think one of the most important things to keep in mind is what does healing mean to you? There may be limitations to our ideas of a dream life, because we don’t live in a vacuum, but only you get to decide what your healing actually means and looks like. Unfortunately it’s something that is quite overlooked in a lot of mental health spaces, and we’re not often encouraged to really define it for ourselves. But that doesn’t mean we can’t. 

Personally, an important part in redefining healing for myself has been understanding what I’ve been taught about healing. A lot of what I’ve learnt is to see ‘getting better’ as this hyper-individualistic thing. We’re told that ‘getting better’ is about becoming a productive member of society again, going back to work full time, having more output, and living up to the expectations placed on us. A lot of therapy is often about this idea – it’s about mitigating the factors that get in the way of productivity rather than fostering genuine happiness. The idea of compliance and non-compliance in the mental health system is a huge part of reinforcing this and getting in the way of anyone who needs to stop and question whether this striving for efficiency under societal norms is actually what they need. 

We don’t live in a vacuum, so I think it’s only logical to suggest that we don’t heal in a vacuum either. And yes it is possible to have personal peace without those around you experiencing the same, but that’s not to say our healing is entirely individual. We are connected; we are even a part of nature. When bears hibernate or trees shed their leaves we don’t look at them and say they should be doing more, they should be doing better; we understand that they are in a season of their life. Yet we so often fail to extend this same understanding and grace to ourselves. We are a part of nature too, and so we are connected to those around us and every part of the world around us. It is only logical to think we should lean into this connection and these seasons to find peace. So I would say healing is community. Healing is working together. Not in order to fix or mend one broken individual, but to recognise what in our living, breathing system of life contributed to their pain in the first place, and to heal all of us. I’ve found that when I am held by a community, only then am I able to find my own inner peace. 

We also seem to see healing as this end destination – we arrive at ‘healed’ and then we continue there as before… until maybe we need to be healed again. But I don’t see it like this. Healing is an ongoing, every day process for me. Just like I see myself as a continually ‘recovering’ alcoholic, I also see myself as a continually ‘healing’ person. Partly because there are new challenges to life every day; partly because I have chronic mental illness; and partly because I see healing in a larger sense too, one of societal healing. That can be hard to conceive sometimes, or to not get wrapped up in. But I see it as a source of hope rather than a drain of hope. A source of power. That healing, as an ongoing, everyday practice, also means trying to help others and be connected with their struggles. Trying to learn how we can all work together to do better, to build better infrastructure, to break the chains and patterns of the past, to move forwards.

So what does healing mean to you? Does healing mean connection? Does healing mean going back to the life you had before? Or is that just the easiest life to imagine? Does healing mean productivity, or does it mean inner happiness and peace? What do you need to see that realised? Is healing individual, or collective, or aided by the collective? Is healing a destination or a journey? 

I’m not saying there’s one right way to redefine healing. It is personal in how it manifests in our lives, but the very fact that so many out there are healing and recovering shows that while it is personal, it is not individual. And I think the mental health system needs to recognise that too. 

Sending all of my love and support to you today xxx

Posted in Mental Health, Personal Growth

Letter To A Younger Me

Hey sweetie, 

I’m writing you this letter because you’ve been on my mind a lot lately. And the thing is, I know you won’t actually read it, you can’t, I can’t actually travel back and give it to you. So there’s no real point in me giving you advice; any advice I do write is, I suppose, more of a reminder for me now – born from the gifts you gave me just by keeping going. Yeah, this letter isn’t really for you. It’s for me now, or us now. To heal a little bit and reflect in a way that doesn’t consume us back to where you are. If that makes any sense? 

I want to comfort you. I want to hug you, hold you tight, and whisper ‘I’ve got you’. Which is something to remember when you feel like the worst person ever, because eventually we’re able to look back and show ourselves compassion. I know it hurts. And I know you feel really lonely, I know. 

I think I’m writing this to you at about age 13, maybe just turned 14. Right as all the mental health stuff really took off, and before you’d gone through enough of it to have any perspective on it. It was all new and you had no reason to think it wouldn’t last forever. But, hey, spoiler alert – it doesn’t last forever. I won’t lie to you, it does get worse. And then maybe worse again. And again. But there’s this magic process you haven’t come across yet, where even though in some ways it gets worse, it never feels quite as bad as that very first time. Because you’re growing and learning and after you survive it once you always know, deep down inside of you, that you’re going to survive it again. And you’re going to learn all these little skills – and big skills! – that help you get through. You’re going to be ok. Maybe not always, but you are going to be ok. 

I would say please don’t drink, but if you’re 13/14 it’s already too late for that. So I’ll say this instead: you know how you always knew, from when you were really little, that you didn’t want to drink? And you were adamant that you never would, and you always thought if you did it wouldn’t end well, but you didn’t know why? Well, that was your gut instinct, and it was a good one. Learn to listen to your gut – it very rarely serves you wrong. So I know you’ve already had a drink, and done some other things, and I know it feels really great right now. I also know I can’t change what happened (or is going to happen, from your perspective). So I’ll say enjoy it while you can. Enjoy it while it’s fun and have those memories that we treasure. The world is a confusing place; it’s a paradox and time is a funny thing – things can be both good and bad. But listen, when it gets too much, know there is hope. Know that this isn’t going to be forever, and you are going to be ok again, I promise. I promise you the madness it’s going to cause is not going to rule your whole life. And I promise you that one day you’ll actually be grateful for it, strange as that may seem. 

But that’s a few years away yet anyhow. For now it might be more relevant to say that food isn’t the enemy and that you are allowed to take up space. You are allowed to exist and feel and show that you feel. I know right now a lot of your time is taken up thinking about food, and actually you don’t even think that’s a problem yet. Well, you’ll figure it out. There’s a lot of cycles and waves in this life, and you’re gonna ride every one of them out. And you’re not going to do it alone. 

In a few months you’re going to meet this amazing person – she’s a bit crazy. I’d like to say thank you for trusting your gut instinct that first day you met her; the one that says ‘this person gets me’. She does. She’s going to help you. And that’s also going to unleash a whole load of other sh*t in your head because once you open the floodgates of emotion, it’s hard to close them. But you’re not going to be alone. Lean into the people who help you, even when it feels uncomfortable and you’re ashamed to do it, because one day you’re going to be able to show them it was worth it. You are going to meet like-minded, supportive people, and make true deep friendships. Loneliness isn’t going to go away completely, I doubt it ever does, but slowly you’re going to learn to make connections and redefine what that means for you. It’s a process we’re still going through – and we’ve come to appreciate it’s actually kind of a wonderful thing that learning is lifelong. You never stop growing. 

I want you to know that I forgive you. I forgive you. All the unforgivable things that make you think there’s no point, the whirlwind of self-destructive hate that spirals out to others – I forgive you for all of it. You are doing the best you can. And one day you’re going to be able to do better. And in 5,10,15 years you’ll be able to do better again! So I not only forgive you, but I thank you for trying so damn hard to keep going when it all seems impossible. 

If I could actually give this letter to you, the one thing I would probably most like to say is that you’re autistic. Surprise! You’re going to find out in about two years and it’s going to make a whole lot of sense and it’s going to change your life. It’s going to be a catalyst in helping you to understand yourself and learn to exist in this world. Because you’re not broken, you’re living in a world that wasn’t built for you. So when in a few months the whole world comes crashing in around you and you can’t be the perfect A* student you built your identity around (don’t worry, it’s actually a blessing to get to rebuild your sense of self and be able to do other things), know that you are allowed to express your needs. You are allowed to be tired and burnt out and unable to carry on at that level without support or understanding. You are allowed to take up space – I’ve said it once, I’ll say it again. 

Ok, what else would you like to know? We’re still obsessed with Carrie Fisher. You were right, we do have a developing mood disorder. Also anxiety, a lot of it. Oh! You’re going to act! You’re going to see your dreams becoming reality and it’s going to feel even better after all this hurt because you’ll understand how precious it really is. You’re actually quite funny, and it wouldn’t hurt you to trust that you can lean into your comedy every now and then. You write a lot, including a lot of poetry (we like poetry now). You went around Europe on your own for 2 months at 17, just like we’d always dreamed! You run a mental health space, have been on a podcast, won an award. We’re still gay. So yeah, you’re ok. You’re not perfect, no one is, so it’s ok to stop chasing that idea of perfection. And you don’t need to do crazy, harmful things to gain other people’s approval and affection. Laughter is the key to making it through rough times – you have to be able to find life funny. Oh and also – not everyone can hear colour?? We were 15 by the time we realised that! 

I love you, always, through all of it. You’ve got this, even when it feels like you don’t. And I’ll be waiting right here for you in a few years, 

Love, 

You.

Posted in Advocacy, Mental Health

Psychiatry and LGBTQ+ Rights

Psychiatry has throughout its history and still is very much linked with control and upholding societal standards. The view many people have is that at its core, even though it may be failing, the mental health system exists to help us be happier. And while it’s true there may be individuals in the system who wish this, the very structure is built around an idea of societal norm,  and returning people to acceptable states of being and productivity. Part of that history of western psychiatry has been its link to LGBTQ+ rights – or more specifically the denial of such rights and the pathologisation of the community as mentally ill. So here is a very brief overview of some of that history today. 

But first, why is this important? Well, the history and injustice of psychiatry is really important to understand because the way the system operates now is directly built on this, so we’re still seeing discrimination of all kinds. We can’t just fund a harmful system, we have to review it, build alternatives etc etc. If we do not understand this history we cannot engage in meaningfully informed conversations about what the future of mental health care might look like, because we risk making the same mistakes by perpetuating the system. 

So here’s some fast facts about psychiatry and gay rights:

  1. The World Health Organisation (WHO) didn’t declassify being gay as a mental illness until 1992. 
  2. They didn’t declassify being transgender as a mental illness until 2019.
  3. Between 1935 – 74 chemical and electrical experiments were done on gay men in psychiatric hospitals to try to change their sexuality in a process known as ‘aversion therapy’. Some men were made to do this to avoid going to jail for engaging in homosexual activity. Conversion therapy is still a practice in many places today, an ongoing demonstration of this abuse and trauma inflicted upon LGBTQ people.
  4. Being gay was also criminalised, as well as being classed as a mental illness, until 1973. This is a clear example of the direct link between psychiatry and criminalization. Under these laws over 100,000 men were convicted in the 20th century. One such example is Alan Turing who was forced to endure hormone ‘therapy’ to ‘cure’ him, or go to jail. He chose the former and was chemically castrated – as were many other men. It was not until 2017 that the UK offered pardons to the thousands of gay men convicted of abolished sexual offences, simply because of their sexuality. 
  5. Gender dysphoria and incongruence (for example) are still used to pathologise being trans – meaning they are terms that label being trans as some kind of individual mental defect, and means transgender people have to jump through hoops before they can access gender affirming care 
  6. 1 in 7 LGBT people avoid treatment for fear of discrimination nowadays 

The joint stigma surrounding mentally ill people and LGBTQ+ people means that they are seen as people to be feared, shunned, or fixed by many. And much of that stems from this history listed above. It is true that LGBTQ+ people are more likely to experience mental illness:

  • 52% experienced depression in the last year 
  • One in eight LGBT people aged 18-24  said they’ve attempted to take their own life in the last year
  • One in six LGBT people  said they drank alcohol almost every day over the last year.
  • Almost half of trans people said they have thought about taking their own life 

These statistics are unsurprising when we consider the intersectional nature of mental illness. It’s not something that exists in a vacuum, and although it may be experienced by an individual it is not an individual flaw. Economic insecurity, discrimination, exclusion, lack of support, homelessness, addiction – these all compound mental distress, understandably, and LGBTQ+ people are likely to suffer more with all of the above. But treatment often focuses only on the individual symptoms, and fails to address the bigger picture, which leaves LGBTQ+ people at even more of a disadvantage. And that’s without even considering the discrimination, homophobia and transphobia within mental health care, which puts an unreasonable expectation on LGBTQ+ people to trust the providers of their care when they haven’t been proven to be safe:

  • One in eight LGBT people (13 per cent) have experienced some form of unequal treatment from healthcare staff because they’re LGBT.
  • Almost one in four LGBT people (23 per cent) have witnessed discriminatory or negative remarks against LGBT people by healthcare staff. In the last year alone, six per cent of LGBT people – including 20 percent of trans people – have witnessed these remarks.
  • One in twenty LGBT people (five per cent) have been pressured to question or change their sexual orientation when accessing healthcare services.
  • One in five LGBT people (19 per cent) aren’t out to any healthcare professional about their sexual orientation when seeking general medical care. This number rises to 40 per cent of bi men and 29 percent of bi women

I think at the very least, LGBTQ+ people should be able to choose mental health care with professionals that reflect their lived experience, but this is so often not an option and as a result they are unable to engage with their care, and may even be blamed for it. But the history of LGBTQ rights is full of stories of community care and community love, and for a community that has good reason to be distrustful of authority figures, perhaps the key lies in modelling peer support and community care on the rich love of LGBT history. I don’t know all the answers; I have opinions, but I do not feel confident enough to say I definitely know what’s right. I do however know it’s time to move forwards and forge a new future. We’re going to get things wrong still, it’s inevitable, but maybe if we’re a bit more aware and intentional about mitigating harm, we can see a brighter tomorrow for mental health care, and the LGBTQ+ community. 

Sources:

  1. https://amp.theguardian.com/books/2015/jun/03/curing-queers-mental-nurses-patients-tommy-dickinson-review
  2. https://www.stonewall.org.uk/lgbt-britain-health
  3. https://www.talkspace.com/blog/mental-health-history-lgbtq-community/
  4. https://www.petertatchellfoundation.org/alan-turing-the-medical-abuse-of-gay-men/
  5. https://www.britannica.com/biography/Alan-Turing/Computer-designer
  6. https://www.gov.uk/government/news/thousands-officially-pardoned-under-turings-law#:~:text=Thousands%20of%20gay%20and%20bisexual,have%20today%20been%20posthumously%20pardoned.&text=The%20historic%20moment%20comes%20after,of%20consensual%20same%2Dsex%20relationships.
Posted in Advocacy, Mental Health

Write to MP About Mental Health System

Writing letters to our MPs about important issues can feel like hitting our heads against a brick wall. I get it. Our government is failing us in about every way possible at the moment while continuing to introduce increasingly more constricting and draconian laws that limit our freedoms and right to democracy. Nonetheless, I still maintain that there may be hope to be found in raising our voices. The more people that stand up against issues the harder it becomes to ignore – and it could even be argued that it’s up to us to believe in hope even when they aren’t giving us much reason to. One of the easiest ways to raise your voice is by writing to your MP. They may not be able to do anything directly or immediately, but they are our representatives and can bring our concerns to the table. Imagine if every person in your district wrote in about the same issue – it would be pretty hard to ignore. Anyone of any age can write to their MP, and you can even email them. 

Our mental health system is in crisis; it’s built on harm and it is perpetuating that harm. And it cannot be fixed just by increasing its funding – you can’t fund a broken system and expect it to fix itself. So we need to raise the alarm and raise our voices. Below I have written a very short template for writing to your MP about the mental health system. To use simply:

  1. Use this website to find out who your MP is and what their email address is: https://www.writetothem.com/
  2. Copy and paste the template below into an email 
  3. Replace the generic details in italics with your MP’s name and your own information 
  4. Add in your own message or questions 
  5. Hit send 

It’s that simple. And it may seem small, but you never know if the small individual actions we take will add together as a collective. It’s worth a try if nothing else. And remember, if they don’t reply or give a satisfactory reply, you can keep writing to them! Don’t let this be an issue that goes unheard. So here’s the template (just a general content warning for topics relating to mental health here such as suicide):

Dear [insert MP’s name],

I am writing to you today because I am incredibly concerned about the state of our mental health system. It is clear to me that the mental health system continues to fail all of us, especially the most vulnerable in our society. As I’m sure you’ll understand this is an incredibly serious issue, with people’s lives at risk. 

The suicide rate in England and Wales was 6.9% higher in 2021 than in 2020, a trend that has been continuing over many years despite supposed attempts by the government to address mental health issues. For example – the rollout and continued expansion of IAPT that is meant to provide early and easy access to psychological therapies but has since been found to be skewing their own data by several studies. The University of Chester found their actual recovery rate to be just 23% by their own measures (which can include clinically insignificant improvements) as opposed to their claimed 46%. However a large meta-analysis found that 23% of patients with depression spontaneously overcome their symptoms in three months anyway which would render IAPT irrelevant. Despite this it continues to be heralded as a success with no one speaking up about the failures and the people it leaves to the wayside. 

That is the most basic level of treatment and doesn’t even begin to reveal the long waiting times, criminalization of mental illness and failures of the Mental health act, abuse within inpatient treatment, how risk of suicide actually increases after inpatient treatment, lack of appropriate and individualised care, lack of any support for young people, or obsession with productivity instead of personal happiness in recovery. Even within the last six months we have heard about the cases of more young people who have died while in inpatient care –  Christie Harnett, Nadia Sharif, Emily Moore, Charlie Millers, Beth Matthews, and Lauren Bridges. People are falling through the cracks, and being actively harmed by the system. People are dying. It is unacceptable and it cannot be allowed to go on. 

[Insert any personal experience or thoughts here]

Therefore I implore you to research more into the truth of the mental health system and the harm it has caused to so many. And I ask you – what will you do, as representative of this community, to raise the voice of our concern about the mental health system? What will you do to push for change? What will you do to support the mental health of young people in this community? What will you do mitigate the compounding and intersectional issues with mental health (ie. racism, food insecurity, transphobia, poverty)? 

Thank you for taking the time to read this letter and I look forward to hearing your response, 

Kind Regards, 

[Insert your name, address, and contact information here – remember, without an address you will not receive a response!]

Posted in Advocacy, Mental Health, therapy

Issues with IAPT

Disclaimer: Before I dive into the issues with IAPT I just want to clarify that this blog is in no way intended to discredit anyone’s positive experience with IAPT or discourage anyone from using the service. IAPT could still be a piece in the puzzle of helping you find the right support. I am purely highlighting issues that some people face because everyone deserves to have a positive experience of mental health care – if the mental health system can’t adapt to different needs, then it needs to change. This post is about raising awareness of the gaps within that system, and the plaster solution that IAPT has become. Because we all deserve better – it could be you or any of your loved ones needing a more comprehensive, long term and personal care plan. And I would hope that the door was always wide open for you to receive the support you need.

With that said, let me give you an introduction to what IAPT is. IAPT stands for Improving Access to Psychological Therapies. If you are an adult and go to the doctor with a mental health concern, you are likely to be referred to this service as one of the first ports of call. It was rolled out in 2006 and there are now around 220 IAPT services in the UK. It offers patients a limited number (usually 6, up to 12) of sessions with a counsellor using CBT – Cognitive Behaviour Therapy. And it’s true that rolling out this service greatly reduced the 8-12 month waiting time for psychological therapy in 2005, which is great, but that doesn’t mean it provides a greater level of care. 

So let’s look at the information I’ve just noted. CBT focuses on changing thought patterns and behaviours of individuals – which by definition is not suitable for anyone who’s mental health is being impacted by the situation they are in. It’s true that CBT skills can be incredibly useful in helping us cope with day to day life, giving us the tools to reframe our experience so it becomes bearable and our thoughts less consuming. But that doesn’t mean it’s perfect by any means, nor suitable for everyone. For example many autistic people have likened the approach of CBT to gaslighting; it just isn’t suitable for application with neurodiverse thought patterns in many. For many others too it simply doesn’t provide the all round support they need – the therapy sessions are not designed to hold space for the person, explore route causes that will continue to be present, or brainstorm ways to change the situation they are in. It can provide people with a quick fix to a singular problem, but lacks a long term approach. 

However, it’s the only framework offered with IAPT, already excluding many from the help they need. Especially because if someone goes through with IAPT treatment they may be seen as already having support and having to face longer waiting times; likewise if they refuse to continue this raises the issue of non-compliance. Non-compliance is a complicated label used in the mental health system sometimes that essentially labels patients as unwilling to try and help themselves and makes it harder for them to access support, simply because the support they refused was not suitable or accessible to them. This is a systematic issue of not providing individualised care, but instead it is labelled as a personal fault and the burden is borne by the individual. 

Even for the people CBT framework does suit, the IAPT programme offers such limited sessions that it’s arguable how much long term support and healing they actually offer. 6 sessions is simply not enough in my eyes. What about the people with more complex issues? The people that learn slower? The people that need time to build a secure relationship with a therapist before they feel confident to start working with them? They are all being left behind by the existing IAPT service. 

None of this is surprising when we look at the roots of how the IAPT service came to be. In 2005 Lord Layard – an economist by trade addressing the economic costs incurred due to mental health crisis – and David Clark – a professor of psychology championing CBT – pitched their idea for IAPT to a board room full of government officials. They pitched it through the economic benefits that providing a cheap service that got people back to work could reap, easing the £12 billion cost of depression each year. Though I understand why so often proposals have to be pitched through an economic lens rather than a moral or social one, I do think it’s very sad. And I think in many ways shows why this system isn’t working. We’re approaching the issue of the mental health crisis wrong if we’re approaching it from a perspective of getting people back to work. Mental health doesn’t exist in a vacuum and is deeply intertwined with all aspects of society which we cannot simply ignore addressing when looking to help mental health. Furthermore, healing is not actually about productivity – this is considering healing through the eyes of someone else looking in on a life trying to define quantifiable proof of them getting better in a way that is palatable to society. Healing is internal and personal; our current mental health system does not recognise or allow space for this in our society. 

Nonetheless IAPT was heralded as an astounding success in the mental health sector worldwide for its quick rollout and wide reach. But in 2010 Dr Micheal Scott – a clinical psychologist at the University of Manchester – began to question the success of IAPT when assessing its patients. He was hearing many stories of patients with bad experiences of the programme who found it useless, dropped out, or pretended to be better to make it end quicker. He decided he needed to look further at how the effectiveness of IAPT therapy was being assessed in order to discover if it was really as great as it was claimed to be. 

The first thing of interest he discovered was that IAPT was responsible for collecting all the data on its own performance – there were no external reviews or assessments taking place. I think many of us will know that this is a bad scientific practice for collecting and understanding data – there should always be peer reviews. So he conducted an assessment to discover the true recovery rates. 

He began by reviewing the cases of 65 people. I’ll admit that’s not a lot, but stick with me here. Scott used various procedures for a robust review including in-depth interviews, diagnostic assessments, and evaluating medical records. His results showed that no matter the condition, only 16% could be considered as recovering. This is woefully below the 46% reported by IAPT themselves – and with good reason. IAPT’s method of assessing recovery rates only included those that completed treatment with them and neglected to count the half of patients who dropped out of treatment. The fact that half of patients drop out of treatment at all is a huge indicator that the programme is failing anyway, but the correct way to conduct research would be to include them in the data. By omitting them IAPT are artificially increasing their recovery rate. I would also add here that even their self-proclaimed 46% could be much higher with proper individualised, socio-culturally aware treatment plans. 

Scott’s admittedly small study isn’t the only one either. The University of Chester’s larger study found a 23% recovery rate, still much lower than IAPT’s claim. And that’s before even considering what IAPT deems recovery to mean. I’ve already explained that IAPT was built around the idea of getting people back to work, and so it’s unsurprising that the programme focuses on getting people back to what are viewed as functioning members of society rather than personally happy with their healing journey. 

This is seen reflected in how IAPT reviews patients progress. At the start of the therapy questionnaires are conducted that rate how depressed or anxious you are, and then again at the end of the therapy. If at the end of the therapy you score lower you are considered to have improved. If you scored just above the clinical threshold for depression at the start of the therapy (let’s say the threshold is 10 and you scored 11) and by the end of the therapy you score just below (let’s say 9) then you are considered recovered by IAPT. But in reality you’ve only dropped 2 points and are likely still experiencing emotional complications in your life! They’re now just not considered inconvenient enough to others to be clinically notable, but that doesn’t mean they aren’t hugely significant to you. You might not feel ‘recovered’ at all. And the scale is really sensitive anyway – you can move around 5-7 points simply by sleeping and concentrating a little better. 

Furthermore , IAPT doesn’t even conduct a control group meaning there’s no way to know if the 23% ‘recovering’ would have improved slightly without IAPT at all. In fact a recent meta-analysis (meaning examination of lots of data from different individual studies) showed that a total 23% of people suffering with depression spontaneously overcame their symptoms within three months without receiving any treatment. Which aligns with the 23% recovering from IAPT exactly, suggesting that the service is totally irrelevant. Yet it is often the only service offered to those struggling, many of whom will continue to struggle unsupported. Real lives are in the balance, and the system is trying to stick a plaster over the issue that doesn’t even work. 

This doesn’t even begin to touch on the deep issues for workers within the IAPT services, who are struggling hugely themselves and being crushed under a culture of form filling and goal hitting heralded above actually providing support. An ex-IAPT lead said, in an interview with James Davies: “To hit the waiting list targets we’d offer people some minor intervention but it was not what they really needed – it was what we could offer to get higher results”. And there lies the problem in a nutshell – people are not being offered the help they so desperately need. And how could they in a system that values goals, productivity and economy above people’s lives? How could they in a system that is built on societal expectations, harm, and conformity? How could they in a system that isn’t working to face the deep intersectional issues of the day? How could they in a system that is underfunded and in desperate need of reform? 

I recognise that criticising the mental health system is a complicated thing to do, because it’s where we hope to find help. But the reality is that it falls short. I do have hope it can improve; I have hope in our communities and our efforts to see better care. And I do know that despite a failing system people can recover – by their own standards – and live bright lives. But I know too it shouldn’t be so hard to get support, for anyone. 

So here are some calls to action! What you can do to help: 

  1. Most of the information in this post comes from James Davies’ book ‘Sedated: How Modern Capitalism Created Our Mental Health Crisis’. I would recommend that everyone read this book to educate themselves further 
  2. Sign up to Mind’s newsletter to find out about their campaigns for better mental health care 
  3. Write to your MP about the failing mental health system and demand care that is individually tailored, socio-culturally aware, and focuses on personal healing not productivity 
  4. Share this post and have conversations with people in your life about the mental health system – all change starts with a conversation 

Thank you so much for reading! Please let me know any thoughts or questions you have in the comments below. Sending so much love and support to you all today 🙂 

Sources:

https://www.nice.org.uk/about/what-we-do/our-programmes/nice-advice/iapt#:~:text=What%20is%20IAPT%3F,with%20anxiety%20disorders%20and%20depression.

‘Sedated: How Modern Capitalism Created Our Mental Health Crisis’ by James Davies 

https://www.madinamerica.com/2022/06/uk-iapt-abject-failure/#:~:text=We%20identified%20a%20series%20of,of%20misdiagnosis%20and%20inappropriate%20treatment.

Layard, Richard (2005), ‘Mental Health: britain’s biggest social problem?’, paper presented at No. 10 strategy unit seminar on mental health, 20 January 2005 

https://www.mind.org.uk/information-support/drugs-and-treatments/talking-therapy-and-counselling/cognitive-behavioural-therapy-cbt/

Griffith, Steve, Steen and Scott (2013), ‘Improving access to psychological therapies (IAPT) programme: setting key performance indicators in a more robust context: A new perspective’ 

Whitford, H et al, (2012), ‘Estimating remission from untreated major depression: a systematic review and meta-analysis’

Posted in Happy Notes, Notes, Personal Growth

22:47, A Poem

You may or may not know this about me already, but aside from being a mental health advocate, I am also a very creative person. My biggest passion in life is theatre, and I adore all forms of creativity from writing poetry to banging pots and pans together to make a beat. I think that my passion for advocacy and my creativity go perfectly hand in hand, as does creativity and mental health recovery. So I thought today I’d try something a little different and post one of my poems that relates to my mental health journey. I only write poetry when I’m feeling an emotion intensely – whatever that may be. I find it the perfect form of writing for expressing deep and complex emotions or experiences. So here’s a little piece of my journey that I wrote about a year ago; a look into my heart. I hope you like it, please do let me know in the comments. Sending love and support to you all today!

22:47 – Letters to Friends

I have mismatched smiles 

And unsettled expressions 

I have tears that come unwarranted

-for most-

But perfectly

For me,

Though sometimes I may pretend they don’t

Till even I forget my tears are full of worth,

And most dangerous of masks 

Are the ones we do not realise we wear.

So when your breath catches

Just above the safe tide mark,

When your ears hear the words 

They want 

So your mind can steal you 

For your fears,

When everything is right, balanced in unbalanced juxtaposition, when it is perfect, 

And so then it is wrong,

And when all you yearn for is to rest,

But all you can do is run,

How then do you tell them you are grateful? 

How do you show 

When you can’t feel,

And words will do no justice, of course they won’t, because the crooked smiles and the disorganised tone of voice will give away the 

Fear? 

Is it fear? 

Or is it acceptance? That you are not, and cannot, but you belong in the silence between them.

Maybe you don’t. Maybe you can’t tell them. 

Maybe it’s enough 

That you know 

And that you be 

As you are 

Until what you are is something new,

And you can glance at what was,

Content. 

Posted in Happy Notes, Managing Mental Health, positivity

100 Good Things in The World

I’ve made a previous post on reasons to stay alive, which you can read here, but I wanted to create another list of good things in the world. It’s like a list of reasons to live, but also a list of reasons to be grateful (a very important practice in my life), and a list of reminders to see the little good things in life when things get rough or stressful. Use this list to find a moment of pause in your day to connect with some peace, and let yourself connect with the goodness in this world. There’s a lot of issues and sadness, and we can’t ignore that, but sometimes we do need a moment to escape the pressure. 

  1. Potatoes – they can be cooked in so many different ways!
  2. The smell of the air after it’s rained 
  3. Crunchy leaves 
  4. Handwritten letters 
  5. Listening to the sound of the sea in seashells 
  6. Chameleons – they literally change colour, that’s insane!
  7. The amazing activists and advocates trying to create a better world for us full of hope 
  8. The internet. It’s really quite incredible if you stop to think about it
  9. Video calls allowing us to see each other and connect from afar 
  10. Really soft fluffy blankets 
  11. All the different kinds of music and how all of us can find different pieces beautiful 
  12. Board games 
  13. Deck of cards – how many different games and tricks you can do, and how they’re unlikely to ever be in the same order!
  14. Snow under your feet 
  15. Sledding down a hill 
  16. Laughing until your belly hurts 
  17. Hats.
  18. The northern lights – they’re like magic!
  19. How many different languages exist 
  20. The top of ice cream before anyone takes a scoop 
  21. Really cold water on a hot day 
  22. A cat’s purring 
  23. Bluetooth 
  24. The smell of old books 
  25. The smell of new books 
  26. The smell of freshly mown grass 
  27. The smell of freshly baked bread 
  28. Pretty sparklers and fairy lights 
  29. The Fibonacci sequence 
  30. Those random acts of kindness from a stranger that brighten a day – like letting you go first in line, offering a tissue, holding a door 
  31. Dogs little paws and toe beans 
  32. Bubbles 
  33. How many different flowers there are! 
  34. The miracle of ecosystems in nature 
  35. The feeling of floating in the sea 
  36. Building sandcastles 
  37. Clouds at sunset when the light illuminates them 
  38. Hugs
  39. The amazing scientific advancements being made every day 
  40. Shooting stars 
  41. Book clubs (or any kind of community club, it’s so lovely to get together over a shared love and interest) 
  42. Amateur dramatic theatre – it’s totally about doing what you love together, no other reason! 
  43. Magnets (just so fun to play with and the science is actually very cool)
  44. Charity shops and thrift stores
  45. People sharing their knowledge and encouragement on the internet 
  46. Pillow fights 
  47. Water fights (why stop doing the things you loved as a kid just because you’ve gotten older) 
  48. Electricity
  49. Beautiful trees 
  50. Daisies close up at night like they’re going to sleep
  51. Sunflowers turn to face the sun 
  52. The colours of leaves changing in autumn
  53. Teddy bears 
  54. The infinity of imagination 
  55. Community gardens 
  56. People being brave enough to live their truth and share their stories every day even though it may be dangerous or stigmatised 
  57. Libraries (they offer the gift of reading to so many more people)
  58. The word ‘serendipity’
  59. Public transport linking us easier 
  60. Funky hair dyes (and the amazing things people do with them)
  61. Fidget toys and logic puzzles 
  62. Hilarious movies we can bond over and laugh at 
  63. Free education (hopefully one day equal and free education will be available to all)
  64. Poetry that reflects our own experiences and feelings 
  65. Funny animal videos 
  66. Free guided meditation videos 
  67. Peer support groups 
  68. Smiles 
  69. So much art and creativity in so many different forms that connects us, reflects and shapes culture, and inspires 
  70. Calculators you can type rude words on 
  71. AAC communication devices allowing nonverbal people to communicate easier 
  72. Medical and emotional assistance animals 
  73. Hot chocolate (or your other favourite warm drink)
  74. Colour changing lights, they are so cool 
  75. Written letters 
  76. Messages of kindness from strangers posted online or scrawled in public everyday 
  77. Blue tac 
  78. Glasses and hearing aids – imagine what it was like before we had them!
  79. Apps for so many different things, making knowledge and the world more accessible for many
  80. Woodland walks 
  81. Friendships
  82. Love is all around us in so many different forms
  83. Dad jokes 
  84. People donate blood to save others every day 
  85. Audiobooks making reading more accessible 
  86. Picnics
  87. Pizza – circle shape, in a square box, cut into triangles 
  88. Alcohol-free alternatives 
  89. Fluffy socks
  90. Showing gratitude 
  91. Bird song in the morning
  92. Finding a penny on the ground
  93. Running through sprinklers 
  94. Feeling of popping bubble wrap 
  95. Hearing a song you used to love and had forgotten about \
  96. Seeing an old friend for the first time in a while and picking up like you only saw them yesterday 
  97. When you have a really cool dream and you can remember it when you wake up 
  98. Eating breakfast food at night or dinner food in the morning 
  99. That cosy feeling when it’s rainy outside but you’re warm inside 
  100. There’s always more tomorrows