The Stigma of Medication

Anxiety, with my name in the same sentence, has been a word I’ve heard for a few years now. However, last year, autistic burnout pushed my anxiety to the limit. I became increasingly socially anxious and hit the point where I was scared to leave the house, let alone attend school. I’d tried therapy in the form of CBT and it just made things worse for me. I was eventually referred to a psychiatrist because I was only sleeping a few hours a night. The appointment rolled around and I was given a prescription for melatonin, the natural sleep hormone, to regulate my sleeping habits. At the end of the appointment, something unexpected happened – I was given some information about an antidepressant drug to help my anxiety and, the knock-on impact of it, low mood. I was told to seriously consider it as an option that could improve my life.

I remember walking outside of the appointment, feeling angry. I didn’t need medication to mess with my brain. I didn’t need sorting out. I was fine. My mum and I argued a little. I wasn’t expecting it at all – I went for sleeping medication, nothing to do with my mood.

I was on a beta blocker, at the time, for physical anxiety symptoms, but my psychiatrist told me that they don’t normally prescribe them as they don’t do much in the long run. I was so annoyed that someone could say it wouldn’t do much, when it had already helped me so far. The idea of physically calming me was so far from the idea of something changing my brain.

The drug selected for me was sertraline. It’s an SSRI – a selective serotonin reuptake inhibitor. Serotonin is often known as the ‘happy hormone’, thought to be responsible for good moods and positive emotions. An SSRI stops the nerves reabsorbing it, to allow more of it to reach more cells without being absorbed. At the time, I didn’t really understand this and just thought the medication would mess with my brain, not necessarily in a good way.

Time helped me come around to the idea, along with the thought of a school trip weeks away. The school trip would mean I’d be away for 5 days, in another country, taking vast amounts of beta blockers to remain vaguely calm. It was at that point I realised something needed to change. I couldn’t be taking medication that would only calm my heart rate for the rest of my life when the issue – that caused all these physical symptoms – was anxiety. I knew those would be days I couldn’t hide away – something that I thought was fine. I hadn’t realised that I only took one beta blocker a day because I was only going out for a few hours. Sometimes, when you’re at rock bottom, you need a change of perspective to realise how unhealthy things are.  Thus, within a few days, I was taking sertraline.

Around a week later, I woke with uncontrollable shakes in my hands, I couldn’t stop them. I realised not long after that it would have been a side effect. At that point, the medication didn’t have an effect so it seemed so pointless, but as time wore on, I slowly improved. I went on the school trip and was okay. It was such a gradual change but slowly I was noticing I was okay. Every single thing I did wasn’t questioned by the anxiety telling me I couldn’t do it because it would go wrong. I could talk to people again, with some nervousness, but I wasn’t avoiding it completely. I began laugh again, something I hadn’t even noticed was missing. I’d get out of bed. I’d leave the house. I’d be part of my family again, not just someone who stayed in their room all day because that’s what felt safest.

There were times when I wasn’t doing so well again, though. Times where I began to slip into my old habits. This time, however, I had a solution, and my dosage was upped. I’ve been on sertraline over a year now and on the same dosage for quite a while. I’ve got my life back, really.

It took me a while, but I realised something not too long after starting to take medication – it doesn’t matter! I need medication to increase my serotonin levels in the exact same way I take iron tablets to increase my iron levels. It’s simple a measure to allow me to function in a way that other people can do without medication. Mental health care, and it’s the same with physical health, is not a one-solution-for-all.  Everyone is different so their bodies are different and will respond to different measures differently.

And then I realised loads of people take similar medication. So many people of all ages take SSRIs and other similar medications to help their mental health. For some reason, caring for yourself by taking painkillers when you’ve falling over is seen as good while when you metaphorically fall down, and your mental health isn’t great, similar self care is seen bad.

Medication for mental health issues is so stigmatised. In most of the media, therapy is the answer. Within a few sessions, everything is sorted and there’s no looking back. It made me feel almost alien – I needed medication and other people didn’t. Therapy worked for others and it didn’t for me. Antidepressants are always made out to be a big deal. You never see anything casual about it. There’s not a TV show where a character suddenly goes “Oops, I forgot to take my medication, I’ll take it now”. It’s always an issue and not normalised in the slightest. Where are the people saying “I need medication to help me, so what?!”

Sometimes we’re given an alternative and it’s someone saying “I don’t need medication, I’m better than that”, which is really harmful. It brings a level of elitism to mental health discussions, the idea that if you don’t need medication, you’re better than others. Again, different things work for different people and you’re not better than someone for finding something that works for you.

My point here is that despite the stigma and the initial feelings I had (probably caused by said stigma) I take medication for mental health issues and that’s fine. In fact, it’s brilliant, because it allows me to live again, something that seemed impossible.

 

A Guide To: Meltdowns

Meltdowns are a huge part of life as an autistic person. They are often misunderstood, misinterpreted and cited as reasons that autistic people need curing or are childish. In reality, with the right understanding, meltdowns can be understood, remedied and even prevented. All you need is a comprehensive idea of what’s happening, and I think it’s safe to say I’ve got that. To achieve this knowledge, you need to look at a few things: what a meltdown actually is, the causes and triggers to aid future prevention, what can happen during a meltdown and finally, how to cope in the moment.

What a meltdown actually is (and what it isn’t)

I want to say meltdown is a response that autistic people have to a particularly distressing or overwhelming situations, but it feels like a huge oversimplification. During research for this post, I came across a definition that made so much sense to me. It’s not condensed in the way I thought it had to be, but I don’t think you can do that in this case. I found the definition on the autism wiki, and here it is:

Neurotypical and autistic people have the same fundamental response to stressors. When people recognize something as harmful, they become alarmed. Their brains and bodies secrete combinations of chemicals that people typically recognize as emotions. Those emotions, in turn, spur people to take action intended to face the threat. If these emotions are ignored, then they will build until they prompt the person experiencing them to fight or flee the threat.”  (Link)

The particular post then goes on to briefly mention that autistic people can face difficulties in identifying these emotions. This difficulty to identify and understand these emotions is called alexithymia, my post on which can be found here. Without this kind of internal understanding of emotions but feeling alerted to something harmful, I don’t think it’s surprising that we have meltdowns.

Another way to look at this is from the opposite perspective: what is a meltdown not? The easiest way to do this is to look at what it’s usually mistaken for – a tantrum. Tantrums have a goal, are done to illicit a reaction, are accomplished in a way to avoid physical injury and simply, the person is in control of themselves fully. A meltdown is pretty much the polar opposite, a sign of pure distress. I spent a long time not knowing that I’m autistic and even I mistook meltdowns for tantrums. I wondered what was wrong with me, why I couldn’t control myself. Now I understand more, I realise that it’s a natural fight-or-flight response, similar to that of a panic attack, really.

Additionally, there is another ‘type’ of meltdown called a shutdown. A shutdown is the same as a meltdown in the sense that it is a reaction to distress and they can be dealt with in a similar way. However, it’s a more inward reaction. Common things that happen during shutdowns are not being able to make sense of what’s going on, wanting to communicate but not being able to, staring straight ahead, not moving or responding and finding a place to be alone and lie down or curl up.

Causes and triggers

Learning personal causes and triggers can make life a lot easier, as it increases your likelihood of being able to prevent a meltdown. Causes and triggers vary from person to person so it’s best after a meltdown, whenever you feel ready, to look at the situation that caused it. For me, it tends to be a combination of factors that build up and up to the point where something that seems much less severe pushes me into having a meltdown. Here is a list of some common triggers and why they might be overwhelming:

  • Sensory issues –   over or under sensitivity can be very distressing for an autistic person. Being oversensitive means that seemingly quiet noises and lights that aren’t too bright to a neurotypical person could be overwhelming to the point of triggering the fight-or-flight response. I can’t speak from personal experience about being strongly hyposensitive, but I think it’s a similar experience but in reverse.
  • Changing routines, or at least what is expected –  These changes can vary in size, from changing an entire day’s plans for whatever reason to changing the order an autistic person gets ready in the morning, but they can be equally distressing.
  • Communication difficulties – if an autistic person cannot communicate their feelings aloud or are being misunderstood when they communicate in the way that feels comfortable (verbally or not) can cause frustration that ends up triggering a meltdown.
  • Anxiety – these can cover both anxiety disorders, something fairly common with autistic people, and the feeling of anxiety. Again, it’s a case of not being able to deal with what’s going on.
  • Passing as neurotypical – also called suppressing autistic traits, this is where so much energy goes into not behaving in a way that feels natural, often to avoid uncomfortable responses or bullying. It’s exhausting, and being exhausted is so likely to lead to meltdown, because the resources to deal with it are naturally depleted.
  • Illness – being ill is horrible for both the mind and body. Dealing with pain – in relation to sensitivity to it – or the feeling of everything being different to normal are just a couple of reasons why being ill can lead to more meltdowns.

Knowing that these are causes means that it’s possible to deal with these specific issues in the future before they escalate to the point of meltdown. This could mean bringing ear defenders everywhere to ensure if it gets too loud, there is a way to cope or allowing time away from people to act as autistic as possible or preparing in advance for potential changes.

And it’s all trial and error. You might find that one communication method makes things worse or a certain type of sensory equipment isn’t right for you. It’s all about working things out as you go along, but having a starting point, for example a personalised list of things you want to try, is important. When you find things that work – keep them, and use them again and again.

What can happen during a meltdown

The behaviours that occur during a meltdown can be difficult to actually explain. I’ve seen them described as a range of things including “extreme”, “dangerous” and “repetitive”.

By “extreme”, I think people mean that the behaviour can look that way to an outsider. Again, meltdowns are often confused with tantrums thus we do see similar behaviours involved. Meltdowns are a personal experience but some common behaviours seen during them are:

  • Kicking
  • Screaming
  • Shouting
  • Biting
  • Crying

The repetitive part presumable refers to stimming, the self regulatory behaviours autistic people use to cope with the world around them. Most of this stimming is harmless but some of it falls under the category of an SIB – self-injurous behaviour. I struggle with head-banging, hand biting, hair pulling, skin picking (involving my lips mainly), aggressive jaw grinding and arm scratching. During a meltdown my brain is overwhelmed and cannot make sense of my surroundings. This means my awareness of safety is reduced greatly and I do harmful things without thinking about the impact.

Self-injurious behaviour during meltdown is not the case for everyone, but it’s not uncommon, either. A way to overcome this is to find tools for redirection and try to put them in a place they’ll be useful. Headbanging on a hard floor or wall can be redirected to a pillow, which will obviously cause a lot less damage. For biting, chewable silicone can be a great substitute. It can be brought in a variety of toughness levels and is often found as jewellery as an on-the-go solution.  Long lasting lip balm, or moisturiser for skin, might helping with picking and having hair tied back are other solutions. Overall, redirection is time-consuming and difficult, so reducing meltdowns through the identification of triggers is probably more effective in the long run. However, redirection will reduce the damage done by individual meltdowns.

There is a raw and personal account of a meltdown from blogger Cynthia Kim, which brilliantly shows the confusion and difficulties experienced during meltdowns. It can be found here.

How to cope in the moment

Coping in the moment is actually incredibly difficult. I think the first step is knowing that it’s okay, and that nothing’s wrong with you. Having this knowledge, for me, was important in terms of personal acceptance. It made me realise that if a meltdown has started, don’t try and stop it, just ride it out as safely as possible. How to cope can be split into two categories: coping as an autistic person and helping an autistic person cope. Here are some strategies for both:

Coping as an autistic person:

  •  Try calming stims – flapping, rocking – whatever works for you.
  • Find a place with the right sensory environment for you – it might be a dark, quiet room you can lie down in.
  • Listen to some music, it doesn’t have to be traditionally calming – once again, whatever works for you.
  • Do something related to a special interest – reading, writing, drawing, talking.
  • Try to breath regularly, especially if you’re crying.
  • Use deep pressure, a weighted blanket if you have one.
  • Afterwards, have a shower/bath, a drink, a snack and sleep for a while if you need to.

Helping an autistic person cope:

  • Their verbal communication might be reduced, if you need to communicate, ask simple yes or no questions to which a nod or shake of the head can be the answer – “Can I touch you?”, “Would you like to go to a different room?”, “Would you like me to leave you alone?”, “Would you like me to get you anything?”
  • Don’t physically restrain them. The fight-or-flight response is triggered and they may fight without intending to.
  • Offer solutions to harmful stims, for example, give them a pillow to bang their head on.
  • Try to find somewhere else to go if it happens in public – a quiet room is best.
  • Remain calm. They might be shouting and screaming but they don’t mean to. It’s a natural response and being surrounded by someone who is calm might help them feel calm quicker.
  • Try to help with things like calm breathing, but if this makes the autistic person more distressed, stop and try something else.
  • Afterwards, discuss what happened and how to avoid it in the future, but don’t push the conversation until they are ready. The actual meltdown can be traumatic or embarrassing and might take a while to be discussed without distress.

So that’s my guide to meltdowns! It’s one of my longer posts, but an important one, I think. Thank you for reading it, and I hope it’s helpful. You can follow this blog via a wordpress account or email to be informed when I’ve published a new post. I’m hoping to be doing this weekly with Sundays being the day where I publish them. Thank you for reading and supporting this blog.

Meltdown Memory

It’s a simple image, grandparents surround by their grandchildren. It’s a family celebration of their golden wedding anniversary, and part of that is taking photos outside of their house; everyone is dressed up nicely in new clothes, most likely brought for the special occasion. The oldest, and thus tallest, grandchildren stand at the back, while the two youngest stand one either side of the sitting-down grandparents. Everyone is smiling, including the girl to the right. However, she has blotchy cheeks as she does so. Her smile is not quite as genuine as the others, even though she’s delighted to be there. She’s been crying but hopes it doesn’t show. The girl to the right is me.
It’s lovely to stay with – or near by – my grandparents, their house has always seemed to be a happy place for me. I’ll never forget, nor fully lose, the excitement associated with the early morning get-up to visit them. Admittedly, it’s the only time I willingly get up before 7am. There’s memories of dressing up with the special dressing up clothes, kept in pink cardboard chest in my grandparents bedroom, or playing shops with the set of small cardboard boxes and plastic tins, using the plastic shopping basket they were kept in. As I’ve got older, the memories are more of interesting conversations with Grandpa and height jokes with Nan. Memories extend further than this, though, as most surfaces and walls hold pictures frames, displaying other memories. These range from school photos of us grandchildren and graduation pictures of both children and grandchildren to holidays in a variety of locations and or important birthdays. And, of course, among them is the golden wedding anniversary picture.

I remember it surprisingly well, but then again, I often do with days like this. I’m fairly certain that we – my mum, dad, brother, sister and I – were staying with my auntie, although there’s a chance we were at a hotel. This time is not quite as clear as later on that day would become. We’d gotten dressed up into our nice clothes and headed to our grandparent’s house. There, we chatted a little, before preparing for pictures. It was just before we would begin taking them that I realised something: I’d forgotten my jewellery.

I was only eight, and the jewellery was not impressive nor important. I believe it was a necklace with my name on that a friend had brought me from her holidays, and possibility a bracelet too. It wasn’t important but it distressed me in a way that’s difficult to explain to neurotypicals. I was supposed to wear it. I’d packed it for the reason of wearing it. It then felt wrong without it. It then began: the meltdown.

I didn’t have a word for it at the time, and to everyone – including myself – it seemed like a childish tantrum. It’s important to distinguish that it wasn’t. I’ll go more into this is the next post I have planned, set to work on the informative side of this but for now, here are the simple differences: it didn’t have a purpose, I wasn’t looking for a reaction, I wasn’t trying to communicate something I wanted. I was distress by the situation not being as I expected.

Looking back, it seems small. I have meltdowns quite a lot, I always have, but they’re normally over larger things than forgetting something, unless things have been getting to me. Maybe the noise of everyone greeting each other, the social event, the eye contact I was making or the difference in routine contributed in some way? Maybe it’d been things from weeks ago that I’d pushed down that resurfaced? Maybe I wasn’t fully physically well, making me more vulnerable to such a meltdown? Maybe I was still adjusting to the first-time-ever-worn clothes? Or maybe it was simply the necklace and the necklace alone.

Whatever caused it, I vividly remember having a meltdown in my grandparents back bedroom. I remember a lot of tears, difficulty breathing and general confusion. Again, something I plan to go into next time, but I can only describe it briefly as being in the sea, trying to swim but the waves are too harsh so you give up. It’s hard to focus on what is actually around you, the creatures you might see or the brilliant day it is, because you’re dealing other things.

I can almost hear my mum reassuring me that it’d be okay, to no avail. At the worst point in a meltdown, I can’t be calmed. You’ve got to ride the waves with me for a while, before we begin to swim again. My cousin came in, a couple of minutes later, kindly offering me her necklace, but I declined. It didn’t change the fact I’d forgotten my own. Again, float before you swim.

When the height of it all passed and things began to get better, a level of panic set in. Cue the next stage of the meltdown: desperately trying not to cry because you’re worried of how the blotchy face will show in the pictures, but crying seeming like the only way to deal with the anguish caused by the situation.

I think, more easily consoled this time around, my mum dusted a little powder onto my face to reduce the redness, while she reassured me that I didn’t need a necklace, it probably wouldn’t be noticed in the pictures anyway. The same with my red face. To be fair, it isn’t that noticeable, but photos, for me, have always vividly triggered memories. Combined with the fact meltdowns have always remained in my mind, more vivid than photos maybe, mean I remember it clearly.

The rest of the day, once again, falls into the realm of a blur. Nothing is quite as prominent as the meltdown, but I’m sure I loved the time spent there, as it was time spent with my grandparents and family.
This post is something that’s been playing on my mind recently, and as I mentioned, I hope to create more informative follow-up. It’s a reflection for me, part of collection of them I’m beginning to post, on autism things that I didn’t know had a name at the time.

Finally, I’d like to thank my wonderful Nan and Grandpa for supporting me through everything and accepting me for who I am. If you end up reading this, I hope you remember how wonderful you are (and how short you are, Nan, not that I’d ever let you forget!)

Standing Out

It seems that in life you’ll either stand out or slip into the shadows, unnoticed. Except, the chances are you probably won’t. It’s not that simple and most of the time it means you’ll be one, while actual wanting to be the other. Being autistic means I naturally stand out so I spent years slipping into the shadows.

Many autistic people spend their lives doing something known as “passing as neurotypical”. Whether it’s a conscious effort or not, it’s far from inherent and can use up energy at a ridiculously rapid rate. Simply, it’s repressing our autistic-ness. It’s not reacting to sensory stimuli in the way that feels natural. It’s not physically behaving in a way that feels natural. It’s not being yourself. It’s putting on a neurotypical facade and pretending you actually understand the world.

I spent 15 years of my life doing this and can remember it all so vividly. It was only last year when I stopped, but I can remember repressing things from years early. It was like living a body that didn’t belong to me, I wouldn’t allow myself to be me. I can remember the times I smiled and nodded because I couldn’t process speech quick enough and it was too awkward to ask the person to repeat themselves. I can remember the times on school trips where people would comment “Why do you never eat?” because the food wasn’t meals made by my mum, consisting of the small range of food I liked. I can remember the times the facade slipped a little, and people would ask “Why are you so weird?”. Those are just some of the things I experienced during the 15 years I barely allowed myself to recognise every non-physical trait I possessed, because I was scared.

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Credit: Autism Women’s Network

These comments and situations may seem unoffensive and harmless but it’s important to remember that they were about the very core of who I am. They are what fuelled my belief that hiding myself was okay, and even the best option for me. Unfortunately, it was probably the worst. It meant that I struggled with autistic burnout for such a long time, most of last year. It might not seem like a long time, but each days drags when you struggle to get out of bed and forget basic self care. The Autism Women’s Network recently released an image with the signs and causes of such a burnout. I’d recommend reading it to understand what autistic burnout is, and if you do, you’ll see “Passing as neurotypical/ surpressing autistic traits” under the causes section.

It’s interests me how far I was willing to go to fit in, to pretend I was like anyone else, but how much I didn’t care about other aspects person I created. I was never interested in fashionable clothes or popular music that other people listened to and I’m fairly certain it was because adopting an “I don’t care” attitude on these somewhat surface-level things was easier. I couldn’t bring myself to dedicate time to wearing the clothes everyone else liked, or the horror movies everyone seemed to watch when we were thirteen; pretending to be someone you’re not is kind of preoccupying.

And it’s not that I ever wanted to lie to people, it was more of a coping mechanism in a sometimes cruel world, that won’t always accept people for who they are. I think it’s somewhat natural to adjust yourself fit in when you’re different. It’s easy to omit the mental health issue you have when telling people about yourself, to cover up what society might consider physical imperfections, to say you like something you don’t. Fitting in is such a hidden choice, but people do it every day. Last year, however, I made a choice. A choice to be me, and express that in my day to day life.

I’m autistic and I honestly don’t care what people think anymore. I flap my hands in public when I’m happy. I’m honest that I don’t understand emotions. I talk about my special interest in depth, if I want to. Allowing myself to be unashamedly and proudly autistic means I stand out but it doesn’t matter. Anyone who glares at me or comments things in a snobby, ‘I’m-better-than-you’ tone is someone I don’t want around. It might mean at times in life I’m somewhat isolated but I’d rather be lonely for being me than popular for lying. And I’m lucky enough to always have my family, who love me for who I am and I love them for who they are.

Ableism and Autism

I’ve been writing a lot of posts recently but within each post I get to a point where I stop and pause. There’s one topic that reoccurs within discussions about autism and I’ve not felt ready to go into it fully. I think it’s finally time I do, however, so here it is: my post on ableism.

Ableism is simply discrimination in favour of abled people. Strangely enough, though, we don’t see it discussed and portrayed in the same way things like racism, sexism and homophobia are. This isn’t to say that ableism needs more attention because it’s worse, just that it’s so erased that many people don’t even know that it has a name. “Racism for disabled people” is one of the one’s I’ve heard a lot.  As I said in a previous post, autism is described as a neurodevelopmental disability, thus prejudice and discrimination against autistic people falls into the category of ableism. Obviously, ableism is something that many different disabled people face but as I am an autistic person with no other disabilities, I can only talk about it from my own viewpoints and the viewpoints of those within the autistic community.

Ableism doesn’t just come in the form of bullying, although that is something a lot of autistic people face. Part of ableism is the names we’re called by other people for not processing something quickly or stimming in public, but it spreads a lot further than that. Ableism isn’t just the “you can’t play with us because you flap your hands” comments we see on the playground. It spreads a lot deeper than that, even into the language some people use on a daily basis on issues surrounding autism and autistic people because they think it is acceptable.

Functioning Labels

A key example of this normalised ableism that everyone has heard of is functioning labels. This is when autistic people are divided into high functioning and low functioning. Functioning labels are inherently flawed for many reasons, but largely due to the fact they’re unrealistic and somewhat ridiculous. These flaws can be summed up in one simple tweet that I’ve found:

Image result for functioning labels tweet
Credit: Ellen Murray’s Twitter

I’ve heard and seen so many conversations, online and in real life, that use these labels, so much so that I can confirm this tweet is correct. I remember seeing a post, not too long after a diagnosis was suggested to me, from a girl who was very annoyed at autistic people on the internet accepting themselves because her brother had what she called ‘real autism’ – he was what she considered ‘low-functioning’, and these ‘high functioning’ people on the internet didn’t understand the struggles her brother faced. This girl was not a professional, but we see this in professional communities as well. I’ve been told, from a simple glance, that I couldn’t be autistic because I didn’t seem autistic. I’ve heard ‘you’re a pretty and intelligent young girl’ as reasoning more than enough times – “used to deny support”.

Just because I didn’t fit the media-influenced idea of autistic people – a young boy with headphones who doesn’t make eye contact and cannot verbally communicate- I was one of two things: 1) not autistic or 2) high functioning. The amount of people you can find online who’ve plucked up the courage to tell people that they’re autistic – putting themselves at the risk of verbal, ableist abuse – who get the response “oh so you must be high functioning” is ridiculous. What’s more ridiculous is how this is seen as a compliment. How is it a compliment that you’re detaching that person from people just like them because they don’t quite fit your stereotype?

On the other end of this, we see people who are ‘low functioning’. One of the – many – problems with functioning labels is that there so subjective. Who fits into what category? A seemingly common opinion is that those who can’t communicate verbally nor take care of themselves to a neurotypical standard are ‘low functioning’ and it’s ridiculous. I’ve seen the ableism here as well. Non-speaking doesn’t mean unworthy of a voice, not at all, and someone who has a far better perspective of this than I do is Amy Sequenzia, a multiple disabled, non-speaking advocate who can be found here.

The easiest way to put it is that we’re all autistic and fortunately some people in the medical community are listening. A common diagnostic criteria, the DSM-5, removed things like “Pervasive Development Disorders”, “Asperger’s Syndrome” or “Autism Disorder” using “Autistic Spectrum Disorder” instead. It has been argued – and I must say I agree – that “Classic” autism and “Asperger’s” aren’t far from functioning labels at all. They’re used to distance autistic people from each other, and put us into boxes that aren’t there.

I’m about to ruin this idea of a linear spectrum that we can find all over the internet and in real life. I would like to clarify that this:

spectrum

is not the autistic spectrum. This is ableism. 

Functioning labels are a construct used to divide autistic communities, not a scientific fact. There is no such thing as ‘severe’ and ‘mild’ in the same way that ‘high’ and ‘low functioning’ don’t exist.

The autistic spectrum is a circle. Sometimes I have executive dysfunction – where I physically cannot plan out the steps for

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Credit: Rebecca Burgess’ comic, found here

a task and complete it (something I do plan to talk about at some point) and sometime my executive functioning is wonderful! Sometime you will not be able to make me shut up, and others I’m completely non-verbal.  Sometime I remember to eat, and other I don’t. It’s a spectrum that varies from person-to-person, day-to-day.

Functioning labels are just a day-to-day, seemingly accepted form of ableism. They’re not labels autistic people came up with, they’re things that oversimplify a complex neurological variation and have no real definition.

Autistic people are promoting positivity as a response. Yes, I have meltdowns, struggle with things neurotypical people can do and experience sensory overload but that doesn’t mean autism is a negative thing. Somethings are are struggle but that doesn’t mean I should be denied the self love I’ve spent years working on.

Cure Culture and Awareness

Unfortunately, there are so many more forms of ableism I see in regards to autistic people. One is cure culture. I touched on this in my language preference post, where I discussed how an accepting society is what creates issues for disabled people. Basically, because we – disabled people – struggle, we should be cured. Because we need accommodations, we deserve a cure. I don’t want to be cured because if you take away everything that makes me autistic, I’m not me. If you help me thrive as an autistic person, I’m me, without the struggles. As I said in my Language: Identity vs Person post, “If I were to take away her [my sister’s] sensory experiences and subsequent responses, her likes and dislikes, her routines (or lack thereof), the way she moves, the way she thinks, how she communicates and how she acts socially, she wouldn’t be my sister. She wouldn’t be herself, with the defining things that make her her. This works with anyone, take away all the above things, take away those fundamental parts of who someone is and they’re not themselves.”

Sadly, one of the world’s leading autism ‘charities’ promotes this agenda. Thankfully they do not have much hold here in England but I see how their words influence people over here. I present to you the cure culture promoting, autistic people ignoring hate group that disguises itself as a charity: Autism Speaks. You may not have heard of them but they promote a lot of ideas I’m against. I’ll bring you a short summery here but Sabrina from strangerdarkerbetter.com posted a great collection of resources that can be found here.

Simply, they promote fear. Autism, to them, is a tragedy that should be cured because of the burden it places on autistic people’s families. Not the struggles autistic people face, but their families. To them, we are not proper human beings. 13% of their money goes into a cure that autistic people don’t want, though of course they don’t know this because despite being called Autism Speaks, they do not listen to us. Functioning labels, to them, are a convenient silencing tactic – “you’re too high functioning to have these struggles” or “you’re too low functioning to understand”.

44% of their money goes towards advertising. They use the puzzle piece logo, something that is rejected by the neurodiversity movement. It symbolises the ‘mystery’ autistic people are, which is not true. I’m not a mystery if you listen to me, but Autism Speaks don’t listen. They also use the colour blue, something said to represent autism because autism is a ‘boys’ thing, apparently. They also promote awareness throughout the year, but mainly in April, their “Autism Awareness Month”.

As a community, we’ve rejected this month and have reclaimed it under the name “Autism Acceptance Month”. Something I’ve typed out before another post is the comparison to illness. Autism is a neurological variation, not a disease like cancer. In this context, we raise awareness for cancer so people understand what harm it can do. Cancer patients aren’t rejected by people for having cancer because it’s not fundamentally who they are. Autistic people are rejected for being autistic because it’s fundamentally who we are. We don’t need awareness, people are aware of us, they just don’t want to listen to us. We need acceptance.

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Credit: Love Explosions

As this graph shows, less than four percent goes to helping autistic people. Four percent. This is why many autistic people – including myself – label it a hate group. Nearly 44% to their fearmongering campaigns, less than 4% to helping the people they’re claiming to speak for.

(Amythest Schaber also has a video in her – incredible and informative – Ask An Autistic series dedicated to the discussion of Autism Speaks)

 

Infantilisation

Another form of ableism is the infantilisation of autistic people. Quite often, saying “I’m autistic!” means that we’re seen as less of a person, and treated like children. I’m a sixteen year old autistic person, you don’t need to coo at me like I’m a baby, I can assure you. I’m autistic and I struggle with somethings you might find easy, but that doesn’t mean I’m a child.

Mental ages play into this as well. They are often seen to be just as ableist as functioning labels. I can’t say I’ve ever personally experienced them used in regards to myself – thankfully – but a blogger, Cyndi from butterflyinthewell.tumblr.com has. She says “I was a victim of the ‘mental ages’ thing that autistic people get slapped onto them. The psychologist who diagnosed me told my mom ‘mentally and emotionally she is always going to be an 8 year old.'” and goes on to say “I’m nearly 37 years old. I was 8 in 1988 and I stopped being 8 from 1989 onward.”

(I felt this topic, especially Cyndi’s words on it, were personal and not my place to share without prior consent so I did seek permission first! Thank you for letting me use them!)

These mental ages aren’t helpful, they just contribute to the idea that autistic people aren’t human beings in the way neurotypical people are. We’re not children in the bodies of adults. We’re people. Age for us is the same as it is for neurotypical people – the amount of years since we were born.

More Ableism

Ableism, in regards to autistic people, also extents further than this. We have anti vaxxers, who pay attention to a person who is no longer a doctor and his debunked research, and would rather have extremely ill children instead of an autistic child. We have violence towards autistic people, for no reason other than the fact they’re autistic. We have so many forms of ableism.

I know this post is extremely negative but it’s an important one that a lot of people won’t see the discussion on. There are a lot of sources on this post to other websites so you can find out more about what I’ve been talking about.

 

Rollercoaster: My Experience with Alexithymia

The past week has been an absolute rollercoaster of emotions for me. This due to circumstances both expected and unexpected but this doesn’t necessarily make it easier for me to deal with them. I have alexithymia and I don’t understand my emotions very well.

The word ‘alexithymia’ stems from three Greek root words. The first root is the prefix ‘a’, which means ‘no’, ‘not’ or ‘without’. This is followed by ‘léxis’, a word meaning ‘speech’ or ‘language’. Finally, it ends with “thymia” –  a word used in the formation of names, specifically when talking about mental health disorders, concerning emotions. Etymologically, it means something close to “no words for mood”, which is close to the actual definition – “difficulty in experiencing, expressing, and describing emotional responses.”

Alexithymia is different for every person who has it: some people cannot understand any emotions at all, while others can’t express or understand them well enough when compared to a typical standard. The exact statistics vary from study to study, but there is a confirmed link between autism and alexithymia. People can have alexithymia without being autistic and can be autistic without experiencing alexithymia, but a lot of autistic people do. This seems to be where the cold and inexpressive stereotype of autistic people comes from. However, it’s inaccurate in a variety of ways, mainly because autistic people do feel things but the difficulty in experiencing, expressing and describing these feelings leads to inaccurate perception of something internal from neurotypical people. Simply, the feeling are there, but the response is different to what neurotypical people might expect.

Alexithymia, for me, means that I can easily identify strong emotions, like anger and excitement, but others are harder. I understand the divide between being happy and sad, but the grey area inbetween is really confusing for me. Growing up, I learnt words like ‘stressed’ and ‘worried’ but I never fully understood them in a way that could make them applicable to me, personally. I used them when it seemed applicable, namely in situations where I’d heard other people use them. This doesn’t mean I identified such emotions, it was more of a stab in the dark and hoping for the best. Dictating emotions is something that general society seems to believe is a simple task but for me, it’s like speaking a language I don’t understand. I’ve heard someone else use it, so I will, but I doesn’t mean I believe nor fully grasp the words I’m speaking.

Knowing about alexithymia means I’m far more likely to be honest about what I’m feeling these days. Having a name for not having the words to discuss emotions means I can discuss them in a way I’ve never been able to. It seems like an oxymoron, but stick with me. If my mum asks me “How are you feeling?”, I realise it’s an option to respond with “I don’t know.” Instead of using specific words, we’ll look at the scenario together and assess it carefully. This means I’m not using words that don’t work with how I’m experiencing things and my mum can help me understand things. It’s not me suddenly understanding what specific emotive words mean, but understanding my mind and using that to my advantage, an advantage other people have in identifying their emotions.

Like I said at the beginning of this post, there’s been a lot happening recently, which means I’ve spent a lot of time in the grey area of emotional confusion. Significantly, I’ve left school, which meant I said goodbye to people who’ve supported me for over a year and helped me grow as a person, and just a day later, my sister got ill and she’s not been herself. I can’t talk for every autistic person, by any means, but I feel at least part of my issue surrounding change is the emotions it provokes. I don’t know how change ends up making me feel thus I begin to struggle with understand my own mind more than usual. Differing from what seems normal – to me – confuses the ‘balance’ of my mind. I can’t realistically control my thoughts in the way I want to because emotions that I fail to fully understand get in the way.

Another problem I have with emotions is that they heavily depend on the situation. What is classed as a ‘sad’ response, can appear in different ways and be a response to different situations. It’s difficult for me to recognise and coherently comprehend that two events could have occurred, one made me cry and the other I didn’t, but they can both be classified as things that have made me ‘sad’.

In reality, putting names to feelings can be useful but I don’t think they should be heavily depended upon in general. I started a course of Cognitive Behavioural Therapy, or CBT, last year to help alleviate anxiety. It seems to be the most common form of therapy for anxiety and depression so I was hopeful that it would work out. Unfortunately, it just didn’t work for me because of the core principles. It is based upon the idea of the link between thoughts, emotions and behaviours – without a full understanding of emotions, I couldn’t work with the therapy, so it couldn’t work for me.

This is a shorter post that normal, but I hope it’s given an insight to what alexithymia is and how it impacts me.

Achievements: An Honest Account of Going on the Bus

Ever since I can remember, my family and I have travelled on trains or in the car. I could probably count on one hand the amount of times I’ve been on a bus. I’ve never really like it, the motion makes me feel ill and the fact I hadn’t done much them made me feel scared.

For some context, I find painting and card making very calming, a way to relax my overworking brain. Every month or so, I like to make a trip to a shop or do an online order to buy new supplies. After realised I’d be spending the whole day inside on Monday, today as I’m writing this, I decided to go to the nearest arts and craft shop to me. Usually, my mum takes me to the shop, but she was working. I’d thought about the train but the route was far from direct and would involve a walk I’d never done before. The pretty much door-to-door solution was the bus.

As an autistic person, doing something that I’ve never done before is so daunting. Yes, I’d been on the bus, but hardly enough to remember and never by myself. I have to try and prepare for every eventuality before even deciding to do something. The reason for this is that when things go wrong, my body goes into meltdown. I usually cry, go non-verbal and feel completely crushed inside. It hard to explain but even harder to deal with, especially alone. As a result, my parents and I went through everything last night – how to get the bus to stop, which side of the road to stand on and which number bus to get were just a few of the things we discussed.

This morning, I woke up feeling ready and somewhat excited – I love buying new art supplies! I brought my bus ticket on my phone with my mum, which filemeant I didn’t have to worry about asking for the right one. Approximately ten minutes before the bus was due to arrive, I was standing at the bus stop, nervously checking the live timetable on my phone to get an idea of when it would arrive. Bouncing on my feet, I realised I was also shaking, although that shouldn’t have been a surprise. Whenever I’m doing something new, my hands shake in a way that seems like they want to remind me I’m anxious, even though I already know.

A few minutes later, the bus came around the corner, I held my arm out and it stopped for me. After showing my ticket, I sat down. And that was that. I was on a bus – on my own. 

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Achievements can be so subjective. For some people, getting on a bus is nothing, but for me, that was huge. Not only was it me getting over a strange fear of the bus and the likelihood of the motion making me feel unwell, it was somewhat symbolic in my journey of recovery from burnout. This time last year I’d only leave the house for school, and most of the time I couldn’t even walk myself there, relying on my mum or dad for a lift. It’s not just ‘getting on a bus‘, it’s doing something new, something I’ve never done before, alone. I’ve got to say that I was pretty proud of myself! It was easier than I thought it’d be, and I felt the need to send my mum a picture of proof, a sort of “Mum, I’ve done it!”

This positivity doesn’t mean that my trip when without problems. After finishing shopping and a cup of tea, I found my way to the bus stop on the other side of the road, to go home. Again, I was ten minutes early and checking the timetable. A single bus arrived, and according to the timetable, my bus should have arrived then. Not being able to read front of the bus due to glare from the sun and glasses that aren’t strong enough, I got on and showed my ticket. Everything was okay…until I realised the bus had gone the wrong way.

Panicking quietly, I pressed the stop button and got off the bus at the next stop. Behind the bus stop was a patch of grass, where I sat down and – in tears – called my mum.

I have a strong sense of ‘wrong’. Other people might feel that if something isn’t completely okay it isn’t necessarily wrong, but for me it is. Getting the wrong bus, for me, meant that everything was wrong. The day was wrong and I shouldn’t have left the house, I shouldn’t have bothered. Even the things I’d been so happy to buy felt wrong. It was all wrong.

On the other end of the phone, my mum tried to calm me down and told me the only option was to walk back to the first bus stop. I knew this but clung on to some hope that there would be more options. I felt angry, not at my mum, but at myself for getting the wrong bus. I was crying, having a small meltdown on a small patch of grass, wishing that something else would happen.

After calming myself down just a little, I began walking back to the first bus stop – crying some more, mainly because I was just so confused by it all – and texted my mum, saying I never wanted to get the bus again and that I didn’t want to leave the house for the rest of the week. While that sounds melodramatic, I have a disorder that I’ll explain fully in another blog post called alexithymia. In short, I can’t really understand my emotions so all I felt was a cloud of confusion and negativity while I was desperate to get to my safe space, my bedroom. I wanted to be okay and at that moment, I couldn’t see myself leaving what was okay for a long time.

The correct bus arrived and once I’d gotten on it, I calmed down and called my mum to apologise for the anger from earlier and for disrupting her while she was at work. Reassured everything was okay, I hung up and continued the bus journey home. It was a slightly less relaxed journey than the way there but it was okay.

On reflection, it all actually turned out alright. Yes, I had a meltdown but I’m autistic – of course there’s going to be times when I have meltdowns – and that’s okay. It’s part of who I am. It might not be the easier part but being proud of who I am means I accept that they are, and always will be, part of me. For anyone curious, I will be doing the bus again but maybe once I’ve got some new glasses so I don’t get it wrong…