Posted on May 14, 2022
I have to admit that I often struggle with Mental Health Awareness Week, particularly the flooding of social media with “it’s okay not to be okay” and “reach out to someone if you need help”; it makes me want to scream in frustration because we are so far past that. If we’re going to create better support for mental health, we need more than that. This year, the theme is loneliness, which is an apt one, two years and change into this pandemic. I’m certainly seeing a lot of loneliness around at the moment: those with mental health issues, disabled individuals, people who are still shielding and feeling abandoned by society because of the dropped mandates… I can’t imagine what it’s like to be in or from Ukraine right now…
All of these situations need to be talked about and since the Mental Health Foundation is encouraging everyone to share their experiences with loneliness for Mental Health Awareness Week, I thought I’d write about my experience, as a disabled person with mental health issues.
This is something I find kind of hard to talk about. I guess talking about it – and writing about it – makes me feel a little guilty because I’m not alone. I know I’m not alone. I have a great family and some really wonderful friends who have been there for me through some really tough stuff. They try so hard to make sure that I don’t feel alone. Fortunately, we – as people – don’t need to understand each other’s experiences point for point to find friendship and create those important, supportive bonds: I have a friend who has experienced very different trauma to me but there have been a lot of similarities throughout both of our journeys that have made it possible for us to relate to each other. I’m grateful for that, more than I can say.
But it’s also true that I do, often and increasingly, feel alone, feel lonely. And I think that that’s because no one – no one I’ve found at least – really understands what it’s like to be in my head, in my body, in my life, dealing with the problems that I have and the ripple effect that they can create. I’ve had multiple doctors and medical services simply stop helping me (or refuse to help me at all) because my case is “too complicated.” These are the professionals – the people who are supposed to really know and understand this stuff – and even they don’t know what to do with me (and those abandonments, plus other abandonments in my life, have left me with a lot of issues and fears that I have to work on every day). I think the issue is compounded by the fact that I have multiple diagnoses so, even though I may fit into the autistic community, I still don’t feel like I fit in because I also have OCD and BPD and so on; I can’t imagine there are many people who fit into the same community as me when the criteria is so narrow. I’m also not entirely convinced by the idea of community based on diagnosis either, to be honest, especially when the diagnosis covers such a range of symptoms, behaviours, and experiences, like Autism Spectrum Disorder. Anyway, my point is that I don’t feel like I fit in, even with the people that, on paper, I would likely get along with.
As I said, I’m not alone. Even though I’ve never felt like I quite fitted in, I have some great friends and friends from all areas of my life: school, sixth form, uni, Masters, as well as stuff outside education… But I can’t always keep up with my friends, with my peers, and I can’t always do the things I wish I could and I find that so hard. I always end up feeling like there’s a gap between me and everyone else and it’s lonely. Not being able to physically keep up with those around me means that I often feel left out – even if that’s nobody’s intention. And there’s a level of embarrassment and shame about being the one who can never keep up, the one who is always asking people to wait, always having to double check or change or cancel plans. I don’t know where that comes from – I know my friends would never want me to feel like that. But still, it’s there. It widens the gap and it makes that loneliness worse.
The older I get, the more I notice it – the gap. While I spend my time trying different medications, going to appointments for my physical and mental health, and resting after doing what I can manage to do, a lot of my friends are pursuing PhDs, establishing careers, living independently, and building lasting relationships. Our life experiences are just so different. And the longer it goes on, the bigger the disconnect feels. It just feels like the future is full of loneliness and I don’t know what to do with that.
I know this is kind of a depressing post. It’s a depressing truth, although it might have come out differently if I weren’t coming off my antidepressants; if I were in a better place mentally, I might have a more hopeful outlook. I don’t know.
I don’t think it’s a bad theme – loneliness can have a devastating impact on a person’s mental health – but the Mental Health Foundation’s website says that they want to “shatter the stigma around loneliness” and while I can’t say that there’s no stigma associated with loneliness, I can think of so many things that might have more impact as a theme, might make more of a difference, like access to mental health support or the impact of social media or… I don’t know, something more specific than loneliness or nature (last year’s theme). (I talked about this more in my Mass Observation Day post.) As I said at the beginning of this post, I find Mental Health Awareness Week difficult because I so often feel like the information being circulated is somewhat obvious, that we could – and should – be going deeper. I guess it all just feels a bit surface level but I don’t know how that changes, if anyone else even feels this way. It just doesn’t feel like enough. It’s one week a year and it doesn’t feel like enough.
Category: about me, autism, bpd, chronic fatigue syndrome, chronic pain, covid-19 pandemic, depression, emotions, family, heds, medication, mental health, therapy, treatment Tagged: abandonment, ableism, adhd, adhd inattentive type, asd, attention deficit hyperactivity disorder, autism, autism spectrum disorder, autistic, borderline personality disorder, bpd, depressed, depression, disability, disabled, family, fear of abandonment, friends, isolated, isolation, ivebeenthere, life, loneliness, lonely, medical services, medical trauma, medication, mental health, mental health awareness, mental health awareness week, mental health awareness week 2022, mentalhealthawarenessweek, milestones, multiple diagnoses, nhs, obsessive compulsive disorder, ocd, pandemic, pandemic 2020, quiet borderline, quiet borderline personality disorder, the mental health foundation, trauma
Posted on April 2, 2022
Given that the theme for this day was only announced by the UN a week or so ago, this isn’t as prepared as I would’ve liked; I would’ve liked more time to work on it, to organise my thoughts on the topic. ‘Cause this week has just been chaos, both in reality and emotionally: I had to leave my cats at a cattery, pack for my trip to the US, fly to Boston, go to a concert there, and then fly to Nashville, where I’ve been super busy. And all of that has been very stressful. So it’s not ideal but I’ve done the best I could with the time and emotional energy I’ve had.
Given that the theme set by the UN this year is ‘inclusive quality education for all,’ I thought I’d write a bit about my experience in education as a young autistic woman. I wasn’t diagnosed until I was twenty so, while my years in school were obviously affected by my being autistic, we didn’t know that that was the cause.
During primary and secondary school, things were pretty okay. I loved learning so that was never the hard part for me. I was shy – painfully so (P.E. and drama classes were cause for weekly distress) – and I was exhausted by being in school but otherwise I think it was fairly normal. For the most part, I was a high achiever: I learned to read and write well very quickly; I was top of the class in most subjects (some of which I tried hard in but some of which I seemed naturally good at); I was in my school’s ‘gifted and talented’ stream for multiple subjects. I was left to myself a bit, I think; I guess there’s a logic to the idea that you don’t need to help a smart kid be smart but then, in the long run, said smart kid doesn’t learn how to learn, if that makes sense. I picked things up very quickly so no one ever really taught me how to study; once I got to the harder stuff, I started to struggle.
Things were fine until sixth form college, when that problem really kicked in. But still, I pushed through: I worked harder, I exhausted myself further. But I thought there was something wrong with me. I thought I was stupid, that I was missing something; it never occurred to me that something like ASD meant my brain processed information differently, that the combination of the undiagnosed ASD and my all-consuming attempts to keep up were having a detrimental affect on my physical and mental health, or that I wasn’t being supported as I should’ve been. I had individual teachers who were kind and understanding but the institution itself offered no support at all. By the time I was taking my A Levels, I was so burned out and worn down that I was right on the edge of a breakdown. I ended up taking a gap year between the end of sixth form and the beginning of the university as I tried to get a handle on my spiralling mental health.
I went to the same university for both my BA and my MA (although with a few years in between), mostly because it allowed me to pursue my greatest special interest (songwriting) and study it in depth. I was diagnosed with several mental health problems during my first year of the BA and then ASD between the first and second year, which was when my university became more open to supporting me (it is worth pointing out however that I had to fight for almost every step because they simply didn’t understand why I needed what I told them I needed). They had what was called a Student Support Agreement that was supposed to be sent to all of my tutors before classes started so that they knew the difficulties I struggled with and what sort of accommodations I might need but I’d often introduce myself to a tutor and they’d have no idea what I was talking about.
In general, most of my tutors tried to understand; they were as accommodating and supportive as the university would allow them to be. They wanted to know; they wanted to understand; they wanted to make things easier for me (obviously not easier than it was for everyone else but to put me on the same level as my peers so I wasn’t disadvantaged). And while, I don’t mind – and even at times enjoy – educating others on Autism, it took a lot of energy to have those conversations at the beginning of every semester, sometimes multiple times. (It’s also worth pointing out that having those conversations can be really enjoyable when the person wants to learn but it can be a totally different story when you’re having those conversation out of necessity and the person isn’t really engaged.) It wasn’t until the last semester of my Masters that I worked with a tutor who was neurodivergent herself and it was a completely new way of experiencing education; feeling so understood and accommodated was amazing and that was definitely reflected in my work.
But while the individuals were open, for the most part, I felt like the institution wasn’t particularly interested in my experience as a neurodivergent student. It’s a small school so there were never that many of us (or there weren’t when I last spoke to them about it) because there weren’t that many of us in general and I don’t think they saw us as worth investing in (as in, it wasn’t financially worthwhile to educate all of their tutors on Autism and other neurodevelopmental conditions for just a handful of students) despite the benefits it could have for all of the students and for the tutors themselves.
Having said that, when I started the Masters I was introduced to the person brought in to support students with Autism and ADHD. I was feeling really optimistic about going back to uni – that progress was being made – but I hadn’t even known her a month when her actions triggered the biggest meltdown I’d had to date in the middle of a busy London train station, which was a traumatic experience. After that, I never heard from her again and found out from someone else that she’d transferred me back to Student Services without her ever saying anything to me. And all of that was with her training and experience. So I didn’t have a lot of faith in their efforts after that. I’m still talking to them though and I hope that I can still help them make the university experience better for neurodivergent students. They could – and they should – be doing more. With so many neurodivergent students dropping out of university, more needs to be done and I think the starting point is teaching the teachers.
I think it’s worth pointing out that I am in a fairly privileged position: I’m from a white, middle class family with a good support system and I went to good schools throughout my time in education. I was also able to go to university and had support from home that allowed me to do that in the way that was best for me. I was (and am) very lucky. But despite all of that, education has been an incredibly distressing experience.
Ultimately, everyone in education needs to know more about Autism and other neurodevelopmental conditions; knowledge and understanding is the only way that the education experience is going to get better for neurodivergent students. All of these institutions have been built on ableist foundations and I don’t have the answers on how to fix that but I do know that, without the knowledge, nothing will ever change.
Category: about me, anxiety, autism, chronic fatigue syndrome, depression, diagnosis, mental health, response, school, university Tagged: accessibility, anxiety, asd, autism, autism acceptance, autism awareness, autism awareness day, autism spectrum disorder, autistic, autistic adult, autistic student, depression, education, inclusive education, inclusivity, mental health, mental illness, primary school, school, secondary school, sixth form, sixth form college, united nations, university, waaw, waaw 2022, world autism acceptance week, world autism acceptance week 2022, world autism awareness day, world autism awareness week
Posted on April 1, 2022
I have been thinking about and wanting to get a tattoo representing my Autism for a really long time now. There is a tattoo I want to get first because the symbolism is important to me but being autistic is such an important part of my identity and I would, at some point, like to get a tattoo to commemorate that. But figuring out what the right one is is taking a while and a lot of thought.
In my search for inspiration, I’ve now seen a lot of different tattoos representing Autism and I thought I’d share what I’ve found as well as some of my own ideas…
I’ve done a lot of searching and as far as I can see, most people go with the obvious symbols…
The puzzle piece is definitely the most well known symbol associated with Autism, having been used by Autism charities and organisations for decades. As far as I can tell, most autistic people feel that the puzzle piece symbol is, at best, problematic and, at worst, offensive in that it symbolises something missing, symbolises autistic individuals as being less than neurotypical individuals. But despite this negative view, most of the tattoos I’ve found online involve the puzzle piece in some way.
As I said in my post about symbols associated with Autism: “Personally, I don’t hate it as a symbol. To me, the puzzle piece doesn’t represent something that’s missing; it represents the idea that we’re all puzzles and we wouldn’t be complete without every single thing that makes us who we are. We’re mosaics and we are who we are because of each piece that builds up the picture. I know many people feel that Autism isn’t just one piece and I agree but my point is that I don’t see the puzzle piece as something missing but as something fundamental. So I don’t hate it but I think it’s history – it’s original meaning – is too entrenched in society’s consciousness to ever really be changed. I doubt it could ever be a purely positive symbol at this point.” Personally, I wouldn’t choose it for a tattoo that represents my experience of Autism.
I’ve also seen infinity symbols come up a lot in the symbolism around Autism…
I understand why people like the infinity symbol and while there are some gorgeous tattoos out there (like this one), it just doesn’t really resonate with me as a symbol for Autism since it relates to so many other things. It doesn’t specifically represent Autism to me and that’s what I need this tattoo to do.
Some people use rainbows to represent Autism, most likely a reference to the Autism ‘spectrum’…
While this is my preferred of the common Autism imagery, it feels too close to the LGBT+ rainbow flag. I’m queer and so I wouldn’t feel like I was appropriating the imagery but there’s a reason why these identities and causes have their own colours, right? Being LGBT+ and/or being autistic are both really important parts of who we are and I think, by using the same colours for these two identities, there’s potential for confusion when that’s the opposite of the point of these identifying colours and symbols. Maybe I’m overthinking it but it doesn’t feel like enough if it could be mistaken for something else.
Combinations of the Three:
Most of the tattoos I’ve come across involve at least two, if not all three, of these…
Some of them are really beautiful but none of them feel right and, for me, being autistic is so much about feeling that it has to feel right – beyond the idea that, if you’re going to have something on your body for the rest of your life, you’re going to want it to feel right.
‘Takiwātanga’ is the Maori word for Autism and translates as ‘in their own time and space.’ This seems to be increasingly popular, I imagine because of the feeling of acceptance it evokes.
I really like the sentiment and I’ve seen some stunning tattoos that incorporate the word, the two above included, but I’m not sure it’s right for me. As much as I loved the parts of New Zealand I’ve visited – I think it’s the country I’ve felt most at home in – I’m not sure a word is what I want or what feels right for this tattoo when, so often, being autistic feels so difficult to describe.
More Unusual Ideas:
While the previous images and symbolism seem to be the most common, I have seen other beautifully creative ways of representing Autism…
To me at least, these tattoos seem more like the individual’s representation of Autism or something symbolic of it and I guess that’s what I’m looking for: my personal symbol or imagery representing my experience of being autistic. I just haven’t found it yet.
Ideas I’m Thinking About:
There are a handful of ideas that I keep coming back to so I thought I’d include those as well, just in case they resonate with anyone else. None of these images are exactly what I’d choose but they do illustrate the general ideas I have.
Circle of Three
The Circle of Three is a symbol for Autism created by Lori Shayew and Kelly Green to represent the different aspects that make up each individual person: “In light of the recent news that the rainbow is not an arc, but a circle. (Thanks for the proof NASA) It’s time to recreate the new model. Colours of the rainbow weaving in motion. We are recognised for all of our colours… It’s time to break down the spectrum (low-mod-high) and allow our innate gifts to bloom and flourish. Don’t we all excel at some things, but not in others? No big deal. We can jump from yellow to red to indigo to green and back again. Maybe then there are no colours, only light.”
I really like this as a similar but distinct variation of the rainbow and the way that it can be personalised according to each person: all you have to do is assign colours to different areas of your life – as you feel comfortable doing so – and then interweave them in a way that best represents you as a person.
A long time ago, before I was diagnosed as autistic, I read the story of The Loneliest Whale – a whale who’s call is indistinguishable to other whales – and I’ve never forgotten it. I related to it at some level and that connection I felt has never gone away. I want to write more about this whale and how multiple communities have felt a connection to it and found solace in the story but now’s not really the time.
I’m not sure the whale alone would be enough to represent my being autistic but for me, that connection is there so it wouldn’t surprise me if the image of a whale found its way into my Autism tattoo.
The Use of the Rainbow or Colour Spectrum
Light and colour are important to me and to my perception of the world, particularly my perception of music, which is possibly the most important thing to me. So, the inclusion of a rainbow or spectrum of colour isn’t out of the question. I’m just not sure how.
Being autistic, I feel so incredibly sensitive to the world around me. Sometimes it feels like I can feel the waves and particles in the air, the vibrations of every thing, the world turning, the frequencies of stars… It’s like all of my senses have been calibrated to be extra sensitive, too sensitive. And for some reason, that makes me feel weirdly connected to space and to stars. So the presence of these in a tattoo representing Autism would make sense to me.
Again, like the whale idea, it couldn’t exist on it’s own but I can imagine it as part of something bigger, although I wouldn’t want it to be a huge tattoo.
At this moment in time, the idea that feels most comfortable – feels most representative of my experience of being autistic – is something like this…
Something along the lines of these tattoos, but that involves some of the elements I’ve talked about or even all of them, is what I’m thinking about currently. But as I’ve said, I want to get it right so I’m taking my time to think through every detail and make sure I’m sure.
Getting a tattoo is not going to be an easy thing for me. I’m sensitive; sensory information is always loud for me. The sound won’t be easy. The pain won’t be easy (I’m sensitive to it but not afraid of it). The ongoing anxiety around COVID won’t be easy. So, yeah, it won’t exactly be fun. That’s part of the reason I want to get a smaller, simpler one first. But this is important to me so I am going to make it happen.
Do any of you guys have tattoos that represent being autistic? Being neurodivergent? I’d love to see them!
Category: about me, autism, body image, identity Tagged: asd, autism, autism spectrum disorder, autism symbols, autism tattoo, autistic, circle of three, infinity symbol, maori, outer space, puzzle piece, rainbow, space, spectrum, symbolism, takiwātanga, tattoo, tattoo idea, tattoo ideas, tattoos, the loneliest whale, whale
Hi! I’m Lauren Alex Hooper. Welcome to my little blog! I write about living with Autism Spectrum Disorder (ASD), ADHD (Inattentive Type), and Hypermobile Ehlers-Danlos Syndrome (hEDS), as well as several mental health issues.
I’m a singer-songwriter (it’s my biggest special interest and I have both a BA and MA in songwriting) so I’ll probably write a bit about that too.
My first single, ‘Invisible,’ is on all platforms, with all proceeds going to Young Minds.
My debut EP, Honest, is available on all platforms, with a limited physical run at Resident Music in Brighton.
I’m currently working on an album about my experiences as an autistic woman.