Posted on March 31, 2022
Just as many medical conditions, charitable causes, and organisations use certain colours and symbols to identify and differentiate themselves, Autism has multiple symbols and colours associated with it. They all have their own histories, their own origins, their own connotations. Here are several of the most well known…
The Puzzle Piece
The puzzle piece is the most well known symbol related to Autism, dating back to the early 1960s. It was created by a board member of the National Autistic Society, Gerald Gasson, in 1963 based on Autism being a ‘puzzling’ condition. The original logo included not only a puzzle piece but the illustration of a crying child, to represent how children were ‘suffering’ from Autism. Obviously this is deeply problematic and has perpetuated the negative stereotypes about Autism for decades.
Over the years, there have been many, many different puzzle piece designs attached to Autism related organisations and charities. It’s also been associated with the idea that being autistic means you are missing something, that you are missing something that everyone else has; that may be a feeling that many autistic people experience at some point in their lives but it’s not something that should define us or that should be stated as fact. Another meaning associated with the puzzle piece is that Autism is a puzzle to be solved and, by extension, autistic individuals are puzzles to be solved, another stereotype that many autistic people dislike and dispute.
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 its history – its 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.
The Colour Blue
The use of the colour blue was first used to represent Autism by Autism Speaks (used in their ‘Light It Up Blue’ campaigns), instantly making it something to avoid given everything the organisation has done (x) (x). And the colour was chosen because Autism was believed to be far more common in boys, something we now know isn’t true; it’s just that the signs are often more easily observed in boys and men than in girls and women. Given the history with Autism Speaks and the misinformation implied by the colour, this is something to move away from.
Most likely due to the use of the word ‘spectrum,’ rainbows have been associated with Autism and with neurodiversity. Many feel that the range of colours represents the different abilities, challenges, and identities of the autistic individuals the rainbow symbol represents.
While I understand the association, the rainbow will always be firmly associated with being LGBTQIA as for as I’m concerned and attaching it to both identities will not only cause confusion but feelings of appropriation. While I know that isn’t the intention, using it for two different communities and ways we identify is only going to cause problems.
The Colour Gold
The choice of gold developed in deference to the use of the colour blue: “The idea is to have a common thread that runs through all groups, advocates and supporters that was easily recognised, different and came from the autistic community, not from those who think they speak for us.” (x) It’s based on the chemical symbol for gold, ‘Au,’ the first two letters of Autism and autistic and it has multiple positive connotations. Gold is something that is strived for, something rare and valued and treasured, giving autistic individuals a sense of being special, rather than less than – a feeling the puzzle piece often results in. It’s also not gender specific, just like Autism.
Like the gold symbol above, infinity symbols are fairly popular when representing Autism (often rainbow or gold coloured) because it represents everyone, every variation of Autism. The rainbow infinity symbol specifically was chosen to be the symbol for neurodiversity by Judy Singer (an autistic woman with an autistic child and sociologist) in the 1990s. This symbol therefore represents not just Autism but other neurodevelopmental conditions such as ADHD, Dyslexia, Dyspraxia, and more. The infinity symbol not only represents the variation within the community but the inclusion of everyone in it no matter what their strengths, challenges, and so on are.
I have nothing against the use of infinity symbols but for me, it’s too vague; it can represent too many things. I was using it in Maths long before I found out I was autistic so, in my head, it’s all about numbers and equations and that’s not how I see Autism at all. So, because of that, it just doesn’t really work for me; I don’t feel like it represents me as an autistic person or as a person in the autistic community.
The rainbow circle is one of the most recent symbols representing Autism, created by Lori Shayew and Kelly Green: “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.” (x) The logo for ASAN – the Autistic Self Advocacy Network, an organisation created by and for autistic people – is not dissimilar to this symbol.
This is probably my favourite of the Autism symbols. While the traditional rainbow feels very entrenched and important in the LGBT community, this uses the fitting aspects but clearly distinguishes these two communities. I also really like that it can be personalised for each different person by changing the number and colour of the bands, chosen to represent your experience of being autistic as you see fit. So, with the general design being pretty recognisable, it can represent the community and the individual.
There have been more over the years but, as far as I know, these are the most significant ones, the ones that keep coming up. I’m not sure if we’ll ever find a colour or a symbol that we all agree on – I’m not sure if we need to – but I think transparency around the symbols and their histories… that is important. If there’s anything I’ve missed or more information I can add, please let me know. And I’d love to hear your thoughts on the different symbols so please leave a comment below if you feel so inclined!
Category: adhd, autism, identity, research Tagged: asan, au, autism awareness, autism speaks, autism spectrum, autism symbols, autistic self advocacy network, blue, gold, infinity, infinity symbol, lgbt, lgbtg+, lgbtqia, light it up blue, national autistic society, neurodivergent, neurodiversity, puzzle piece, rainbow, rainbow circle, rainbows, symbol, symbology, symbols
Posted on March 28, 2022
The newly renamed World Autism Acceptance Week begins today! I’m not sure I agree with the name change – I’m not convinced that neurotypical society has progressed beyond awareness (something I wrote more about here) – but I am on board with a week that provides information about and celebrates being autistic. So, every day this week, I’ll be posting something Autism related. And to start, I thought I’d pull together everything I’ve written about Autism and my experience of being autistic so far…
These posts are ones specifically about being autistic or Autism-adjacent experiences but there are a lot of other posts where I do talk about how being autistic affects one thing or another. So if you’re not seeing what you’re looking for, check out my complete list of posts and if you can’t find it there, shoot me a message. I’m working on a lot of Autism related posts at the moment so what you’re looking for may well be in the pipeline.
Category: anxiety, autism, chronic fatigue syndrome, covid-19 pandemic, diagnosis, family, food, heds, quotes, therapy, university Tagged: asd, autism, autism spectrum disorder, autistic, neurodivergent, neurodiversity, neurotypical, world autism acceptance week, world autism acceptance week 2022, world autism awareness week
Posted on February 12, 2022
TW: Mentions of self harm and suicidal thoughts.
So, I’ve been gone for a while. After having a bad reaction to the first ADHD medication, I had another bad reaction to the second, Bupropion, as well. Everything fell apart and I was really unwell for months; I couldn’t get out of bed, let alone write. I’m still not feeling great but things are better than they were and I am starting to feel able to write again, hence this new post.
After the mess that was Xaggitin, I was hopeful (kind of – in the only way you can be when you’re feeling hopeless and suicidal) that Bupropion would be better, given that it was an antidepressant but one that’s supposed to help with ADHD. I honestly don’t know whether it was better, which is somewhat mindblowing considering how awful the Xaggitin was.
As always, this is just my experience. Please don’t start, change, or stop taking any medications without the advice and support of a medical professional.
BUPROPION – 150mg
The most pressing of the side effects was the nausea: it was overwhelming. And it went on all day, every day. It was horrendous. I was barely eating and while I can’t see it, I’ve had multiple people comment that I’ve visibly lost weight. (I also had a weird reaction to the Christmas tree in that it made the nausea even worse – it also irritated my eyes, nose, and throat, making my cough even worse, which wasn’t pleasant.)
I had consistent difficulty sleeping. I was always wide awake until very late at night (or early in the morning) and then I struggled to get up at anything approaching a reasonable time the next day – I also had a lot of very vivid, stressful dreams, which is something I’ve noticed pops up when I change medication. I was physically exhausted all the time (both therapy and hydrotherapy, for example, had me falling asleep on the sofa, which I haven’t done in months) and I was feeling very burned out and overwhelmed with nothing left emotionally as well as physically. I had a couple of almost meltdowns as a result (I think the only reason they didn’t turn into full on meltdowns was because I was so physically exhausted so I just shut down instead).
I was very depressed, feeling hopeless and having suicidal thoughts. I was also restless and had this ongoing sense of unease. It was awful but my psychiatrist strongly encouraged me to stick with it for a month to really get a feel for it, for whether it would help or not. The depression and suicidal thoughts could’ve been a hangover from the Xaggitin and the only way to know was to give it more time.
I was also having headaches, not quite at migraine level but not far off.
The nausea continued, unfortunately. It was still bad but it was a little better on some days, I think. All of the food around Christmas was pretty stressful though: I still didn’t really have any appetite but I did manage to eat a bit, although what I used to consider a normal potion made me feel very unwell.
My sleep schedule remained messed up too. I was getting to sleep at around three in the morning (regardless of any help, that being medication or the methods I’ve used in the past that have helped) and then struggling to get up the next day. There was one night where I never got to sleep and then, the night after, I slept for fourteen hours and felt well rested for the first time in longer than I can remember. I’d hoped that that would right my schedule – at least a bit – but it didn’t. I was back to struggling to sleep the night after that. And I was still having the terrifyingly vivid nightmares. I was also physically exhausted: Christmas Day and a small family thing the day after Boxing Day, in particular, absolutely wiped me out.
The anxiety and depression persisted, plus I felt very, very emotional; I was restless and uneasy and I felt very raw and lost. It was pretty overwhelming.
The headaches continued too, plus the weird response to the Christmas tree: it made me feel very nauseous and made my eyes burn horribly. I love having the Christmas tree up so that didn’t help my mood.
BUPROPION – 150mg (+ PROPRANOLOL (20mg))
I hadn’t wanted to start Bupropion and Propranolol at the same time since it would be impossible to tell if one of the two wasn’t working. So, two weeks in, I added the Propranolol. But while I’d remembered that, I’d lost track of time and forgotten that, after two weeks, I could up the Bupropion. So I was taking the half dose three days longer than I’d intended to (in which I also got my COVID booster).
The trouble sleeping continued. I was finally getting to sleep between two and five in the morning and then, of course, struggling to wake up in the morning. I was completely exhausted and finding it a real struggle to get out of bed at all, something that certainly wasn’t helped by my depression. Feeling depressed, hopeless, overwhelmed, and anxious… getting up and facing the world felt like more than I was capable of.
The nausea was still very present too and there were moments when I had to stop and sit down on the floor and just focus on not throwing up. It was very unpleasant. I couldn’t really handle food, not that I really had any appetite anyway.
I also had a headache that grew into a vicious migraine (with intensely painful light sensitivity). The COVID booster was positively pleasant in comparison. My arm was sore and heavy for a few days but that was it, symptom wise, as far as I could tell.
BUPROPION – 300mg (+ PROPRANOLOL (20mg))
I only managed five days on the full dose of Bupropion. It was clear straight away that it wasn’t agreeing with me.
If I was sleeping, I was sleeping terribly: I was getting to sleep around three at the earliest and then desperately struggling to wake up in the mornings. But between the depression and the anxiety, I found getting out of bed felt overwhelming. The depression had gotten even worse – the worst it’s ever been – and everything just felt hopeless. The self harm urges and suicidal thoughts were relentless. I felt checked out of my life and I just couldn’t engage with anything, even things that I love and things that have previously helped when my depression’s been bad. The anxiety amped up too. I was just overwhelmed, terrified that something bad was going to happen; I felt like I was constantly trying to stop myself from panicking. The nausea and lack of appetite also persisted; I was barely eating anything. But I have to confess that I didn’t really care. Food is so stressful for me that not eating was a relief.
BUPROPION – 150mg (+ PROPRANOLOL (20mg) + LORAZEPAM (2-4mg))
With things getting so bad, my Mum was calling anyone who could help us and my GP told us to go back to the half dose, adding Lorazepam to help with the overwhelming anxiety (which apparently not uncommon when taking Bupropion).
At this point, I’d basically stopped getting out of bed, only getting up to have a shower and try to eat something before going back to bed. My anxiety (including racing thoughts, which I’ve only had a handful of times) was so bad and so overwhelming that I just couldn’t engage with anything: everything made my anxiety worse. It messed with my sleep even more and I barely ate at all; just the thought of food made me incredibly nauseous. I had meltdowns and I self harmed (which didn’t actually make me feel any better) and just being up in the daylight made everything so much heavier so I stayed hidden in my darkened room. I was beyond miserable.
Halfway through that week, the Crisis Team (or Assessment and Treatment Team as I believe they’re formally called although everyone we spoke to called them the Crisis Team) came out to see me. As nice as they were, I’m not really sure what the point of it was. The guy wanted to make sure I was eating at least a bit; he wanted to know about my anxiety and depression; he wanted to know whether I was having thoughts of self harming and suicide, although he didn’t ask if I was planning on acting on those thoughts. And then he rambled a bit about me being monitored over the medication change. I’m not sure what good that would do. I’ve changed medications so many times now; I’d just be doing what I do every single time but with someone coming to see me everyday. How was that supposed to help? What was that going to achieve? They offered to refer us to one of their psychiatrists, which my Mum asked them to so so that we could find out whether, at this point, there was any point in continuing with the Bupropion or whether I should start coming off it officially. As I said, they were nice but it was a pretty frustrating and upsetting experience and I just wanted to cry. I wrote in my diary afterwards: “Oh my fucking god, I can’t keep feeling like this every day, over and over again. It just makes me want to tear my hair out and rip my skin off and scream until my throat tears.”
Over the rest of the week, I continued to sleep badly and struggle to wake up. I lay in bed all day, my brain just spinning out of control: my thoughts felt very chaotic and it was all just big, overwhelming feelings that I couldn’t make sense of. I felt like I was losing control of my mind – like I was just a spectator – and I felt like I couldn’t breathe. And I couldn’t stop crying. I was depressed, anxious (by the end of the week, I was up to 4mg of Lorazepam daily – prompted by calls to 111 and then my psychiatrist – although I was still paralysingly anxious), terrified, miserable, and exhausted: those seem to be the words I wrote down the most. Eating was an ongoing struggle, although the nausea had finally dissipated (for the most part).
After speaking to my Mum, my psychiatrist recommended I come off the Bupropion and, with my depression so bad, go back to an MAOI antidepressant since we’ve had the most success with them. I wasn’t thrilled by that plan (I’m still not wild about it) because the Phenelzine isn’t great, plus it massively limits the options for ADHD medication. But there don’t seem to be any other available options so I just went with it. With the two week wash out period, I didn’t have to make the decision straight away.
WEEK 1 (20mg Propranolol + 4mg Lorazepam)
My sleeping schedule got worse: it was taking longer and longer to get to sleep until I was eventually drifting off at around five in the morning. That, of course, meant I was waking up later. I didn’t really mind that: I didn’t really want to be awake anyway and being awake in the dark didn’t feel quite as difficult as it did in the daylight hours. I did get up each day – to shower, to try to eat – but it was a miserable experience that usually resulted in tears. I felt completely overwhelmed and just didn’t know what to do with myself but I was still restless and felt like I was constantly on the verge of a meltdown. Even though I wasn’t doing anything, I was completely exhausted, which just made the inability to get to sleep that much more frustrating.
I had periods of intense anxiety but for the most part, the depression was overwhelming and suffocating. I felt separate and disconnected from my life, and like I couldn’t get back to it. I felt completely hopeless and the suicidal thoughts continued. I was completely miserable.
WEEK 2 (20mg Propranolol + 4mg Lorazepam)
I was constantly exhausted, barely eating and my sleeping just kept getting worse, getting more screwed up and out of sync. I took sleeping pills, I tried every strategy that’s ever worked, every possible combination… but I just couldn’t get to sleep; it just got later and later until I was going to sleep at eight in the morning. It was miserable. I was miserable: I was in tears multiple times every day; I was incredibly anxious (I’m not convinced the Lorazepam was doing anything); I was deeply depressed and consistently having suicidal thoughts and thoughts about self harming (which I did act on although it didn’t make me feel any better). It was the worst I’d ever felt. Everything just felt impossible, overwhelming and hopeless and I just didn’t know how to act like that wasn’t how I felt. It was all too much and I just didn’t know what to do with myself: I couldn’t engage or connect with anything. Everything felt wrong and uncomfortable and sad.
It’s a really hard state of mind to describe so I thought I’d include some of the things I wrote in my diary during the week:
So it was a rough week after a rough few months. The wash out period is up but I still don’t know what to do. There are so many reasons why I don’t want to go back to MAOIs – messy, convoluted reasons that I don’t even know how to put into words – but there doesn’t seem to be another option. I still don’t want to take them though. I feel completely stuck.
This was several weeks ago now and as much as I didn’t want to go back to an MAOI, I had a bit of a breakdown and started taking a new antidepressant, Moclobemide. I was desperate. And, as I said, things aren’t great but they are better than they were. I still feel very conflicted about what to do around the medication and the clash between the medications for each condition but at least I am feeling clearer and not so completely overwhelmed.
Category: adhd, anxiety, depression, emotions, food, medication, meltdowns, mental health, self harm, sleep, suicide, treatment Tagged: adhd, adhd medication, anti-anxiety medication, antidepressants, anxiety, anxiety disorder, asd, attention deficit hyperactivity disorder, autism, autism spectrum disorder, autistic, autistic adult, bupropion, depression, exhaustion, gad, generalised anxiety disorder, generalized anxiety disorder, insomnia, lorazepam, loss of appetite, maoi, medication, medication change, medication review, meltdown, meltdowns, mental health, mental illness, migraine, migraines, moclobemide, monoamine oxidase inhibitors, nausea, neurodivergent, propranolol, self harm, side effects, suicidal, suicidal thoughts, trigger warning, tw, xaggitin, xaggitin xl
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.