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Notes From A Tricky Brain

  • Sensory Struggles

    I was mindlessly scrolling through Facebook a couple of days ago when I came across a question on a page I follow (Autism Late Diagnosis/Self-Identification Support and Education). It was as follows:

    “What are some things that you didn’t know were sensory issues until you realised you were Autistic?“

    One of the things I’ve found about receiving a late diagnosis is that I’m constantly discovering new explanations for the things that I always thought set me apart from everyone else. But it turns out that I do actually have a tribe, if I look in the right places. There are websites and Facebook groups where I suddenly feel seen for the first time. On that note, and in no particular order, here are some of my answers to the above question:

    1. I have to wear proper socks and shoes all year round. I’ve never been able to put my bare feet into shoes without feeling extremely uncomfortable. In the past, at a push, I would perhaps wear flip-flops on holiday in a hot country but that hasn’t been relevant for 15 years. And, yes, I am aware that it is currently fashionable to wear shorter jeans/trousers and trainer socks so that one’s ankles are on show…but I just can’t. I also struggle to look at people in trainers who appear not to be wearing socks (even if they are but I just can’t see them). To everyone reading this who knows me, I’m sorry – it’s not personal!
    2. I can’t stand anything fluid on my skin other than soap or water. This applies particularly to make-up, but also things like hand cream and body lotion.
    3. On a similar note, I hate the feel of my hair on my face and neck. If you’ve always wondered why you’ve never seen me with my hair down, or looking nice, then these last two are why.
    4. This might sound a bit strange, but I don’t really like to be touched. I will accept a hug from a few very honoured people (mostly those who are related by blood), but what I’m really referring to are things like facials and massages. I was once the only person completely traumatised by a surprise away day (I’m shuddering as I write this) at work, where we were taken and “treated” to such things…I’m not exaggerating, I came home in tears.
    5. I don’t like wearing anything that feels tight around my waist. I will make an effort and wear jeans if I need to (when I’m at uni, for example), but if I’m at home, or walking the dog, then it’s pjs*, joggers, tracksuit bottoms or (to bring us a bit more up to date) combat trousers.
    6. On a similar note, I don’t like anything tight, clingy or skin-hugging on my top half. I always favour oversized in everything. If it doesn’t come oversized, I’ll order a size up. These last two issues have been particularly bad since I “recovered” from anorexia, and then bulimia…but that’s for another post.
    7. I can’t touch wooden spoons or ice lolly sticks. This is not code for anything, it’s a simple truth that needs no further explanation.

    *I don’t wear pjs to walk the dog, unless its raining and I’ll risk just pulling on some waterproofs (with an elasticated waist) and hope I don’t get hit by a car and have to go to hospital.

    All of these things relate mostly to touch. However, I also have some of the more obvious sensory issues such as noise-sensitivity, light-sensitivity (I hate, in the words of Peter Kay, the “big light” being on), and an aversion to either preparing food myself, or watching someone else do it (especially raw meat)…again with the eating disorder residue.

    I’m sure, with time, I’ll remember more of these idiosyncrasies and I’ll add them to this blog as I go. For now, though, I hope someone out there can relate…and, if not, maybe you at least understand me a little bit more.

  • Wasted Potential

    Image source: azquotes.com

    [Disclaimer: *I started drafting this post weeks ago, so the news reports referred to are older than suggested. On a similar note, and to explain my hiatus from this blog, I’ve been ‘dealing with some shit’ recently and didn’t want that to come across here. Back in the day, I wrote an altogether different type of blog which was more of a venting space. If you want to explore it, the link is here, but be warned that a lot of it is quite grizzly…even the domain name is a little messed up!]

    There was a piece on BBC Breakfast a couple of days ago* about the UNBELIEVABLE amount of time people are currently waiting for an ADHD assessment and subsequent diagnosis. At the time of writing, in England, people are waiting 8 years…that’s right, not 8 months, 8 YEARS. I’d really like to put a link to the above mentioned piece here, but iPlayer only makes recordings available until midnight on the day of broadcast. There is a separate, written report here.

    Shocking (understatement) waiting time aside, I wanted to address something that was said by the young woman who sat on the red sofa (if you know, you know) and relayed her experiences of languishing in the education, and then mental health, systems. Specifically, she blamed this time for what she considered to be “wasted potential”.

    Now, I languished in the same systems (almost continuously) with incorrect, after incorrect, after incorrect, diagnosis, until someone finally agreed to consider the fact that I was born autistic. That’s right, I was born this way. So, for the first 38 years of my life, I floundered in the school system, and then I floundered at university, and then I (very literally) nearly died trying to keep a lid on things, pretend everything was ok, and go to work in a very average job every day for 6 years. Not to be outdone by educational and societal pressures, I then entered the mental health system, where I floundered (and very nearly died again, multiple times) for a further 11 years. Again, all of this because I was born this way. Imagine if someone had picked up on that fact…I don’t know, when I was making a shitty job of navigating high school, maybe? What might my life have been like? I wonder this EVERY SINGLE DAY. People tell me not to waste time on regret, that it doesn’t change anything. They’re right of course, but they haven’t had their lives destroyed by a broken system…I have.

    Fast forward to now, only two and a half years (not a long time, in the scheme of things) post-diagnosis. Admittedly, I’m still under the remit of the Community Mental Health Team and I don’t see that changing any time soon, but I’m also bordering on being a semi-functioning, semi-productive, member of society. It has taken a lot of work, and a lot of help from some key players (whom I will talk about in a separate post), but I think I’m winning at this game called life. In the course of completing a semester of my MSc, I have somehow come across the most amazing support system (who are neither related to me, nor pathologise me). For the first time in my life, I’ve gone outside of my house and met people who see more than a freak, more than a slightly odd human who serves little more purpose than to steal oxygen from other humans, more than a sick, struggling, frail little person, battling with life and who can only be managed with lots of medication and (metaphorical) bubble wrap.

    My course advisor has said (not to me) that she’s never met someone so capable with so little self-esteem and confidence…I think that pretty much sums up what 38 years of undiagnosed autism does to a person. I’ve finally met people who look at me and see ‘wasted potential’, and who want to see me turn that around (maybe they can also advise me how to give up my apparent addiction to both commas, and parentheses (neither of which I’m certain I’m using correctly))…

    …it’s ok, you can laugh (or smile, even) at my hilarious jibes, made (as always) at my own expense.

  • Road to Ruin

    CW: brief mention of self-harm and self destructive behaviour. Please proceed only if you are comfortable with the subject matter.

    Having barely navigated school, I duly went to university and did my four years. If I say that like I went off to serve a prison sentence, it’s because I’m deliberately drawing that analogy; I served my time, survived (but most certainly didn’t thrive in the environment), and came out ill prepared for life outside the walls of the institution that is the University of Glasgow. I chose to study Applied Maths…mostly just because I enjoyed Maths at school; I hadn’t really thought beyond my degree and what I might want to do in terms of work. I graduated, started applying for random jobs and eventually found myself working in the Financial Management department of the NHS…because why the Hell not?!

    I’ve been thinking about this post since I created this site, and the conclusion I’ve drawn is that I have no coherent words to describe my six years of employment. I’m therefore just going to outline the things that lead to my (always inevitable) complete mental breakdown as a list of bullet points:

    • A lack of social maturity, which I can now explain but, at the time, felt like a defect in me as a person.
    • Difficulty in coping with phones, especially answering them with no clue what was going to be asked of me.
    • The general bustle of a busy office. One thing I remember HATING, and still struggle with, was/is people standing directly behind me.
    • Striving for perfection constantly whilst, paradoxically, having zero confidence in anything I ever did.
    • Meetings with budget holders. I looked about 12 until I hit my 30s so always picked up on a lack of respect in terms of me advising NHS managers what they could and couldn’t spend public money on.
    • Societal pressures and the expectation that I would continue to study and become “chartered” just because I was educated to a certain level; no one ever asked me if I enjoyed what I was doing.
    • My inability to cope with anything that wasn’t a normal working day. We had occasion to move office as a team multiple times, and I never knew where to put myself in these situations. I remember once being sent to “open the mail” because I was merely getting in the way of an otherwise strategic operation.
    • Social anxiety around eating, which led to me not eating an awful lot, which led to much bigger problems…but that’s for another post. I became known as “the girl who doesn’t eat” and my habits where a source of many a curiosity.

    I started working for the NHS in 2005. I moved to a better role, within the same building, a couple of times in my first year and each was a huge ordeal. I struggled to cope with the change of environment and having to adjust to working with new colleague. These were the rare occasions where the mask would come off and I’d be openly emotional. No one, including my parents, could understand this. As a result, I languished in my third post for 5 years.

    I was first medicated for anxiety in 2009. The reason I remember this is because it was a couple of days before I was due to go on a holiday that involved a long-haul flight, and that was the last time I ever went abroad. I somehow managed to soldier on for another couple of years, intermittently visiting the GP with vague symptoms of anxiety and depression, but I became too unwell to hide my incoming illness in the spring of 2011. My line manager tried to be helpful and referred me to Occupational Health but this only forced me to pay attention to how I was feeling and confront the fact that I was quickly loosing the ability to push my emotions down. I started eating even less, and self-harming every morning before work as a way of helping me cope with the upcoming day; a kind of trade-off, if you like. Eventually, that same line manager found me stimming in an empty office on 1st September 2011 and sent me home for “a couple of weeks” to “gather myself together” (I’m paraphrasing, really, it was all a bit of a blur…but that was the general sentiment). However, I knew as I walked out the door that day that I would never be back, and I wasn’t. I wish I could tell you that things improved after that, but I’d be lying; it wasn’t even close to how bad things were going to get.

  • I Don’t Want To Be Me

    “WOW!”

    That was the word my CPN almost shouted yesterday when I told her about my newfound acceptance for grounding, breathing exercises and just sitting with how I felt. It was an understandable reaction, since these descriptions were coming from the mouth of someone who has spent almost 15 years fighting against any of these things, as well as talking, counselling, therapy…the list is by no means exhaustive. All I ever wanted was medication, any kind of drug that made me numb, allowed me not to be me.

    I know now that I can probably attribute my non-existent self-esteem to the torment I put up with in my younger years, mostly at the hands of other people...but it also comes as a result of trying to navigate a world never meant for me as an undiagnosed autistic person. From zero self-esteem comes self-loathing and, at times, I truly hated myself so much that I couldn’t even stand being inside my own skin, much less my head. Medication (both prescribed and not) was the only way I seemed able to escape that. I didn’t really want to talk about the hundreds of things that made me so unbearably anxious, I just wanted my dose of x, y or z increased. It made no sense to me why the professionals trying to help me wouldn’t save themselves some time and effort, and do what I deemed the easy option.

    Recently, I’ve had reason to stop and take a look at what I was pumping into my body on a daily basis and, ultimately, come off of a (non-prescribed) drug pretty much cold turkey. I’m not proud of this, and I strongly advise against ever (a) taking drugs not prescribed for you, and (b) stopping said drugs without any medical advice, but I’ve done 15 days and counting. As a result, my autism has been very loud (both figuratively and literally) and my anxiety has been off the scale for the first time in a while. Ironically, I’ve now ended up on another prescribed drug to try and nurse me through.

    Although the above mentioned anxiety has been crippling, it has nonetheless forced me to feel something for a change, to be aware of me and who I am. Anxiety is a feeling that I’m going to experience, given my diagnosis of autism with co-existing generalised anxiety disorder (GAD), so I have to stop fighting against it and let it pass – because it will. I’ve had to come up with ways to ground myself (for example, sitting on the floor in the dark), to soothe myself (for example, box breathing, stimming and a fleecy blanket), and to distract myself (for example, walking the dog, puzzles, reading and some “light” studying). I’ve also thought about all of this in relation to my return to university in January, and how it might translate to outside of my house. My hidden disability need no longer impede me; I can tell people what I need and ask for reasonable adjustments to be made…and, don’t worry, I’m not going to take my dog to lectures or sit on the floor in the library! All this said, I think I have to move forward without telling every professional I meet that I “don’t do breathing exercises, grounding techniques or mindfulness”…although I will forever continue to refuse to meditate, go to yoga classes or knit.

    In any case, all of the above is very much a work in progress and is likely to continue to be for some time. I still take five different medications for my mental health, but they are all prescribed (and I take them exactly as prescribed) and they provide a baseline stability upon which I can build and hopefully, eventually, gain a bit of momentum. The hard work is for me, not the pills. I just have to get to know who I am and, most importantly, let other people get to know the most authentic version of myself possible.

  • The School Years

    Image source: vecteezy.com

    According to the National Autistic Society “at school, autistic girls may be more likely to be part of a friendship group and this could be a reason that teachers don’t notice their differences. They may also be missed if their academic achievement masks difficulties they are facing in other areas.”

    I wasn’t lucky enough to know I had autism while I navigated my adolescent years. But that was more than 20 years ago, so I doubt I would have gotten much support if I was aware of why I felt like I was crawling inside my own skin.

    My entire secondary school career, I knew I was “different”. I had few friends, and those I did “hang around” with weren’t the sort of people I could count on to have my back (I found that out on more than one occasion). These feelings of not belonging were perpetuated in their seeming transparency, because people caught on and I became a target in my final two years at school. I never uttered a word of it to anyone until years later; I just put up with it all. In truth, I blamed myself for being unable to conform to the things my peers were doing; getting dressed up, doing my hair and makeup, going “out”, developing an interest in having any sort of intimate relationship. I just wanted to be at home. Today, I can say that – “I just want to be at home”, or “I want to go home now” and those (carefully chosen) around me accept it just fine. Back then it was just another thing that made me odd.

    Of course I know now that I was masking; I was getting up every morning, pushing my emotions all the way down to my boots, and catching the bus to school. I put my head down, worked hard and got decent grades. I would continue to operate like this until my mid-twenties.

    I formed an attachment to a couple of teachers, both what you might consider “mother figures”, in that they were about the age of my own mum. I used to hover around after class, pretending to be slow in finishing my work, and pray that they would just ask “are you OK?”…but they never did. I would use the library instead of the busy common room and I would attend short masses at lunch times, thinking maybe I’d find some peace in religion (I never did; in fact my relationship with my religion is still something I grapple with).

    I never recall being asked if I wanted to attend university, it was just assumed on the basis that I was a high-achiever in terms of academics. One of the guidance teachers wrote me a glowing reference, warning those who may read it something along the lines of “do not be fooled by the calm, quiet exterior because underneath lies a fierce determination to succeed”. To take that out of context, I really, really wish that someone wasn’t fooled back then.

    As a side note, there were certain, perhaps more extraneous, factors that made my time at school difficult. I had a Catholic education, and was once told by a NUN that “no one likes people like you”. What had I done? I’d scored 100% on an essay for my Higher Geography. Way to kick a person when they’re down, missionary of God! Of course, I added this mostly for humour, but it’s stayed with me for more than 20 years so maybe it did do damage...?!

  • Reminding me to Forget

    CW: References to self-harm and related behaviours. Please only proceed if you are comfortable with the subject matter.

    “Remind me to Forget, Kygo and Miguel (2017). Lyrics available on YouTube

    I was going to be cheesy and say “music is one of the things that gets me through tough times…” but that’s not actually true. It’s something that is as intrinsic a part of my day as having a shower, or brushing my teeth. I listen to music all the time, whether passively as I study or walk the dog, or more attentively when I’m watching live music on YouTube. I was born too late for a lot of the music I love, Fleetwood Mac and REM being two of my favourites. But I also keep up with more current bands and artists, like Cold War Kids, Kings of Leon and Noah Kahan. I could ramble like this all day, but it’s absolutely not the point of this post.

    From the day and hour that I felt my mental health start to slide (so most of my adult life) I’ve self-harmed, initially as a coping mechanism, but also to convey how I was feeling when I didn’t have the words. What do we call self-harm, generally speaking? A symptom, a behaviour, a habit…? I’m not really sure, but for me it became an addiction. It became more and more extreme, there was nothing I wouldn’t do to myself and I ended up requiring hospital treatment, or admission, countless times (I really did earn those frequent flier points – which isn’t my proudest achievement). It didn’t matter how close to the edge I got, I’d always go back for more, pushing and pushing my body to see how much it could take. As you can imagine, I now have extensive scarring on both arms and, although I’m used to it, I always cover up if I’m outside, mostly for the sake of other people.

    Above are lyrics from a track called “Remind me to Forget” by Kygo and Miguel. I love the song and, despite taking them completely out of context, I love these lyrics. Perhaps in contrast to how others feel when they engage in self-harm related behaviours and then have to look at the result on a multiple-times-per-day basis, my scars don’t trigger me. They remind me. Remind me that I’ve been through something extremely traumatic, that I’m battle-worn…but that I’ve survived. They are my war wounds, they are testament to the fierce determination I have to stay alive, my tenacity, my desire to keep going.

    It’s a constant work in progress, one that is very much present in my everyday life, but I have other things to turn to before I self-harm now. I’m better at self-soothing, self-regulating…or asking people to help me regulate. I also have lots of things that take up my time now. I don’t always have time to ruminate and think about how I want to punish myself, make myself pay for some unknown crime. So, yes, I have scars but, no, I’m not ashamed of them. The many, many lines on my arms map out my journey, remind me of what I’ve come through…and remind me that I must only look forward now, remind me to forget. I don’t have time, I’m too busy to come off the beaten track and add tributary roads to my journey.

  • Burnout Blues

    Image source: livi.co.uk

    “[research participants] describe the experience of autistic burnout as chronic exhaustion, loss of skills, and reduced tolerance to stimulus. They described it as affecting every part of their lives and lasting for long periods of time.” Dr Dora Raymaker, “Understanding autistic burnout”, March 2022, available online at National Autistic Society

    It’s really difficult to describe autistic burnout to neurotypical people. Many would assume that it’s simply some kind of fatigue that can be sorted with a quick nap. The first time I experienced it post-diagnosis, I went to the GP to query whether I could have Chronic Fatigue Syndrome (CFS); I was wrong, other than my use of the word “chronic“. It was late summer 2023 and I had been utterly, indescribably, exhausted for months. I’d recently completed my undergraduate degree with the Open University and at first I put it down to my working so damn hard for those final exams. But no amount of rest was healing me. The GP never mentioned my autism in that consultation but, having crossed CFS off my list, I did some more reading and eventually came across autistic burnout. Another learning curve from the post-late-diagnosis-hung-out-to-dry situation that I’m still struggling with!

    It would take months of me sleeping all afternoon, EVERY afternoon, feeling like I was wading through treacle whenever I tried to walk, getting overwhelmed with tasks and chores that needed done, and an even more heightened sense of noise and light (I haven’t opened my bedroom blinds since) than usual and very (clinically) depressed. However, I eventually started to feel a bit less overwhelmed and embarked on my MSc in September 2023.

    To put the next part of this story into context, I lost my job due to mental health difficulties in 2011 and hadn’t done anything out with the house for a whole 12 years. Now, lets consider some of the triggers of autistic burnout:

    • Masking; hiding autistic traits and behaviours in order to appear “normal” around new people. I didn’t want the fact that I have autism to be the first thing I tell people about myself…or the second, third or fourth thing! In fact, I didn’t want to tell people at all. I wanted to appear to be functioning in the same way as everyone else.
    • Stress; not only the normal stress that comes with undertaking such a thing as an MSc, but also the stress of having to adjust to a new environment where noise, for example, is a lot more intense than what I was used to. At least at home, I can remove myself from any source of noise to help me regulate.
    • High expectations; being an MSc student, there are not only high expectations coming from tutors and teaching staff, but I also have very high expectations of myself. At times, perfectionism is a real problem for me.
    • Life-changes and transitions; the sudden jump from 12 years of living in a very small world, to having to try and adapt to a brand new routine that involved me being on rush-hour trains, and in classes on a busy campus all day.
    • Insufficient support and reasonable adjustments; I have to admit that I really couldn’t have asked for more support from the university, and not just from within my department…but this has come after the fact (because no one knew I was struggling).

    Is it really any wonder I started to flounder?!

    Semester 1 was manageable. I had done enough “dry runs” to know exactly where I needed to be on day 1, and continued to find buildings well in advance of classes so that I was never lost or stressed, trying to find different rooms in every imaginable corner of the campus. I enjoyed my classes, got on with my classmates and passed all of my exams with decent grades. Then we hit semester 2. In retrospect, I was probably still burnt out from the December exam period by the time we returned in January. I then had to adjust all over again; new timetable, new (busier) classes, new teachers and tutors. That, coupled with the list above, just got too much. I stopped doing any work out with classes; each morning, I’d lift my bag from wherever I had dumped it the night before and go for the train. I was quite dissociated a lot of the time, so wasn’t really managing to concentrate. Finally, I was taking a module which required us to undertake a group project as part of the assessment…that was the final nail in the coffin. I got on with all the members of my group, on a one-to-one basis, but I just couldn’t cope with group WhatsApp messages, co-working…at the same pace as (I presume) neurotypical students. I went to my advisor and asked if I could do the project alone…that’s right, I asked to do a project meant for four people ON MY OWN! Reluctantly, she agreed, but by then I’d realised that I just wasn’t going to manage to continue. Burnout had beaten me.

    In February, I took a voluntary suspension and agreed to take some time away and return in January 2025 to finish my masters. It broke my heart to have to do this, but I knew it was the right decision; I was getting more unwell by the day. Back home, my own Community Mental Health Team (CMHT) had stepped in and I got weekly (now down to monthly, go me!) visits from my Community Psychiatric Nurse (CPN), I’ve seen my Psychiatrist for a medication review and I’m also having monthly review meetings with an autism specialist who teaches at the university; she is under no obligation to do this, but she has been an immense help in preparing me to return to campus and carry on with my studies. And I’m recovering slowly. To keep my brain busy, I’ve enrolled on a couple of Open University modules (I’m an OU addict, at this point) and this gives me routine, and something to focus on each day. But, most importantly of all, I’m looking forward to getting back to Strathclyde in January, and getting my MSc.

  • A letter to my younger self…

    This is actually a repost, with a little editing, of a piece I wrote for my old blog. However, I thought it was still relevant now, and so wanted to put it here as a reminder. I would have liked to have had my Autism diagnosis sooner, obviously I would. But…and I’m not being a martyr, I’m really not…I can honestly say that I wouldn’t change most of the things that have happened to me in terms of mental illness. To put it another way, I’d far rather have gone/go through it than to have to watch it happen to someone I love. Anyway, here is a letter I wrote to my younger self, supposing I could have given myself advice and guidance if I’d have known what was to come.

    Hey there, Little One:

    I know you’re wondering what it is about you, why you feel like your own skin doesn’t fit, why people seem to be drawn to you, to mock, ridicule and laugh when all you want is to evaporate, vanish, for them to just not see you. I know social situations are a living nightmare. I know you struggle to find the words, not just to express yourself, but to answer simple questions, that you miss subtleties and say the wrong things at the wrong times. I know all of this is incredibly frustrating, terrifying, confusing and that you don’t know where to put yourself. I’d really like to tell you that this will improve when you leave school and go to university, that you’ll gradually find your feet, grow out of it and make a decent life for yourself. But it would be unfair to lie to you. Fasten you’re seatbelt, it’s going to be a long and bumpy ride.

    These feelings will persist throughout your adulthood, but here are some things for you to bear in mind. When things like going for interviews or changing job seem impossible, when people say “you can do better” and project societal pressures on you, they mean well, of course they do, but it’s not all that matters. You see, the world you’ll enter just isn’t for you. And that’s ok. No matter what people say, graduating with a degree you (largely) don’t understand and going into a job with prospects, where people expect you to climb the ladder, isn’t what life is about. Don’t exist in this world until all you’re doing is surviving, until it grinds you down to a shadow, until you’ve stopped eating (trust me, sorting that one out is going to be the hardest thing you’ll ever do), sleeping or functioning. Find what makes you happy (I think you’ll be able to work it out, if people give you the space and encouragement) and make a move before it’s too late. In this way, you’ll save yourself not only time, but so much pain – almost too much pain for one person to handle.

    Talking of people, keep those who love you close. Don’t spend years shutting them out – you’ll break their hearts, over and over and over again. Be patient with them when they say the things you don’t want to hear (and trust me, there will be many such things). They’re having fear-based responses to the things they see you doing to yourself, they’re trying to jolt you back to what they see as ‘reality‘, they’re being cruel to be kind. I know you hate yourself, that you feel unlovable, that you just can’t fathom why anyone would care less whether you live or die. But there are people who want you here, and you have to stick around because another couple have yet to arrive – think of all the things you have to teach them! You might never be a mum, but you can be the best auntie on the planet (at least as far as these two little guys are concerned). 

    And now we’ve moved on to a slightly more positive note, let me say this. Things will get better. You’ll work out what you want. Maybe even more crucially, you’ll work out what you don’t want! You’ll realise that there is a place for you in this world and you’ll have the courage to go and get it, or at least try. It won’t be easy. At times it’ll feel like the universe is against you and you’ll be knocked down, again and again and again, but you’ll get back up, again and again and again. That in itself is the most remarkable thing about you. You’re tenacious, fiercely determined and you JUST WON’T GIVE UP.

    So, yeah, things are hard, and that’s not going to change any time soon. But just hang on tight, put up with it all with as much bravery and dignity as you can manage and you’ll be a better person because of it. Before you’re very old, you’ll have gathered more insight and wisdom than most people do in a lifetime and, who knows, maybe you can use that for good one day. 

    Love,

    Louise (aged 40 – see, you got that far) x

  • Meltdown: the g-force effect

    Image source: Rock ‘n’ Roller Coaster, Walt Disney World, MGM Studios, Florida

    I’m not a fan of rollercoasters, as a rule. However, one that I have been on is the “Rock ‘n’ Roller Coaster” in Walt Disney World, Florida. Don’t ask me why; I must have been talked into it by another unhinged family member, and I remember HATING it! Little did I know that I’d be using it as an analogy to describe how I’m feeling almost 20 years later.

    For some reason, the thing that sticks in my head about that particular ride, is that it goes from 0 to 60mph in just a couple of seconds. According to Wikipedia (I know, I would never normally cite Wikipedia, but it will do for now) gravitational-force, or g-force, is an effect caused by rapid acceleration. To get to the point, it is this “rapid acceleration” that causes me to relate all of this to the concept of an Autistic meltdown.

    For me, there is almost always a trigger. This can be anything from confrontation, to a busy, noisy environment or (quite topically) a group-work assignment on my university course. In these instances, I simply cannot control my reaction; my mind and body literally go from 0 to 60mph in seconds and I spiral from there. My body temperature increases, my breathing becomes erratic, my hands shake and I start to stim…usually by rocking, but I also wring my hands. I can’t speak, but often make sounds of distress and, in extreme circumstances, I will repeatedly hit my forehead with my hand. I prefer, if possible, to be sitting on the floor than in a chair. More internally, I feel claustrophobic, intense anger, confusion and frustration. I immediately want to engage in some kind of self-destructive behaviour.

    Invariably, people around me don’t understand this seemingly irrational response and sometimes get annoyed with me. They might tell me that I’m overreacting, and that I should “stop it”. If it’s someone I don’t know very well, they may feel helpless, flap around and not know what to do. But, really, all I need is for people to recognise this as Autism and not inappropriate behaviour, and to sit quietly with me until I can self-regulate. If you know me well, and the sorts of things that are in my crisis plan then, by all means, make a sensible suggestion. If you don’t know me so well, don’t panic; it will pass eventually, I’ll be exhausted but I’ll be able to make a decision about what to do next…and it won’t be a holiday to Florida!

  • She Believed She Could…

    Image source: Wikimedia Commons

    For most of my time under the care of the mental health system, the professional people I came across were quite negative about my future. As I said in my previous post, I only recently got my Autism diagnosis and before that I languished in a broken system for eleven years, with Psychiatrists, Nurses, Occupational Therapists, GPS, and even family members, never giving me any hope that I might one day make even a partial recovery and do something out with the confines of my house.

    However, in 2015, I decided to undertake an Open University degree to give my days a bit of routine and structure, and myself something to focus on other than illness. Because of my circumstances, I had some special requirements put in place to help me and it wasn’t until the Iast couple of years of my degree that I met a mentor who had some experience working with neurodivergent people. She helped me think of my Autism not as an impediment, but as something that was simply as intrinsic a part of my personality as my fear of wooden spoons, and shouldn’t have to hold me back. It took me eight full years to gain my degree but, by the end, I started to think about what I might like to do next. I have always enjoyed learning and studying and for me, the most obvious next step was an MSc. Filled with newfound hope and encouragement, I applied for a full-time, on campus MSc in Applied Statistics at the University of Strathclyde and, to my surprise, was given a conditional offer.

    I met these conditions and in September 2023, after countless practice train journeys and onward walks to the campus to find the buildings I would be taking classes in, off I went into the Big Wide World. It wasn’t easy (and in my next post I’ll talk about Autistic Burnout), but after so many years of people telling me I would never be well enough for something like this, and that I’d pretty much be stuck at home for the rest of my life, I found myself surrounded by people who believed in me, who didn’t even question my abilities. They knew little of my past, but that didn’t seem to matter. I did well academically in the first semester and was respected both by my tutors, and amongst my peers.

    Unfortunately, after so many years at home and only having had a relatively recent diagnosis, I started to unravel in the second semester. I wasn’t keeping up, was starting to burnout and wasn’t making it to as many classes as I’d managed in semester 1. Looking back, it was a lot to expect of myself. I hadn’t attempted to do anything outside of the house since 2011 and my Autism diagnosis was still very new. I had started to understand a bit about how it affected me at home and had started to put things in place to help me regulate my emotions and self-soothe at home, but I never thought about how I was going to translate that to a rush-hour train, or a busy university campus.

    In late February/early March, things came to a head when I had a(n Autistic) Meltdown in my Advisor’s office and we eventually decided that the best thing for me at that time was to defer my studies until 2025. It broke my heart to have to do this, but I knew it was the right thing to do. I’ve been meeting with a lady from the university who specialises in Autism (because who knew there was such a thing as a masters in Autism?!) and, without any obligation whatsoever, she has been an amazing support. We spend time talking about my return to my studies, the things I was struggling with, how we might make things more manageable and measures the university can put in place to better support me on my second attempt.

    So, yes, I’ve been languishing in a broken system for over ten years but, for the first time, I really believe there is going to be more to my life than hospital, the Crisis Team and Mindfulness.

Hello,

I’m Louise, based in South-West Scotland

Welcome to Notes From a Tricky Brain, where I detail the ups and downs of navigating life as an Autistic adult. Feel free to contact me using any of the platforms below!

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