How My Autism Affects Me

 

Many people believe that autism is a scale from 1-10. From not autistic, to very autistic. When in fact it is much more like this, a colour spectrum wheel. Autism is a spectrum disorder, which doesn’t mean that you can be a little or a lot autistic, but rather that there are multiple levels and spectrums to autism in varying areas of life. Such as anxiety, social interactions, noise sensitivity, depression etc. This is why most autistics much prefer the visuals of a spectrum wheel, where you can see the varying levels of an individuals traits. 

For me, I appear very much a neurotypical on the outside, very “normal” on a day to day basis. I get up, get ready and go to work where I communicate, I laugh I joke and I go about my day. But there are also days where I don’t get up, or I don’t speak, or I don’t laugh, I don’t understand and I feel incredibly sad and confused about the world. 

I am usually always very sensitive to noises, especially bangs that I’m not expecting, fire and car alarms are very distressing to me. It makes me jump and twitch as it pierces through my ears and brain and I can’t soothe until it stops. If I’m particularly sensitive or having a bad day, even someone speaking to me is painful and hard, my brain cannot process the communication aspect and instead only hears unnecessary noises that cause me distress. Repetitive noises like the beeping at shop checkouts are a bad one for me, I find with every beep my anxiety rises until I’m ready to run for the exit. I tend to wear ear defenders or my earphones when I’m in a store, I find that it helps me think clearer and be less distressed. People don’t tend to realise that it’s not just that loud noises are bad for us, but more that we are very sensitive to all noise. For example, when someone is speaking to me, I can find it very hard to concentrate on what they are saying and listening to what they want me to do or say in return, as whilst I’m listening, I can also hear other people talking, and background noises like birds outside or cars driving past or the noise of a light switch or a computer low hum, and it’s hard to zone all of that out and focus on processing the persons voice and processing what they need me to do or say. Which means a lot of the time, I will ask people to repeat the last part of the instruction, or repeat my interpretation of the instruction so that I know I’m correct. And if multiple people are trying to talk to me or in the same room it is actual torture for my brain, I can’t focus on one conversation so I zone in on snippets from both and end up extremely confused. I’m also quite hypersensitive when it comes to light too, not so much as noise, but certain lights hurt my eyes a lot, and cause me to strain. I find cool toned lights very difficult, and much prefer warm, homely tones for me to concentrate. Sometimes if I’m having a bad day just a bright sunny day is too much and causes me headaches and painful vision. 

Next is stimming, this is something that most autistic people do to self soothe in distress or even without noticing. For me, I stim by using my fidget ring which spins around in general anxious environments where I’m trying to hide my discomfort. But the more anxious and distressed I am the worse my stims become, for a complete sensory meltdown I am often sat on the floor, shaking my hands in the air or tapping the floor or my head, and I make noises that I find soothing, which are like low humming noises or random outbursts of crying/distress noises which I can’t really explain other than me going “aaaaa” in different levels and tones. I do more subtle stims too, like shaking my legs/feet, tapping or whistling, humming the same song. For me, the humming and sucking in of air and tapping are my most obvious stims, and usually signal that I’m struggling or in sensory overload. But some days I don’t need to stim or I do very subtle ones out of habit and unconsciously, and when they’re noticed or picked up on I will stop and usually settle or do something else, the one I get told I do a lot is scratching my skin, or stroking my skin. If people sit near me they notice that I’m always fidgeting and stroking my neck, collarbone area which I usually don’t even realise I’m doing but it soothes me without me realising. 

Socially, I am quite developed and almost confident and it’s rare for me to openly struggle to socialise, I’ve become a master of masking my autism in order to communicate, mainly because the jobs I’ve done have always made it necessary for me. I’ve always said if I never worked in retail I would probably have a lot more social anxiety than I do now - which is hard to believe some days. For example, most days I can approach people, known or strangers and have a conversation or ask for help, have a laugh and a joke, be sarcastic and funny and socialise at ease. But when I am distressed or struggling, I tend to develop a small stutter, in which my brain is struggling to keep up with my thoughts and anxieties and isn’t exactly sure what I want to say yet. This happens a lot with my sister who I usually contact if I’m becoming distressed in the community like doing my food shop, if she’s with me she will tell me to point at the stuff I want rather than trying to explain because it’s almost like the words just won’t come out. This is the same as when I am in burnout mode - which I will touch on later. But even though I may seem to be able to communicate normally, the processes my brain has to endure to do this are very complex and hard to explain to others. I’ve always felt like I had these unwritten social rules I was meant to follow from a young age, which I now realise was me masking and picking these up from watching other people communicate and from when I’ve gone wrong. These social rules are things that I go through like a morning check list not to do whenever I speak to someone, such as remember to look them in the eye, ask questions to show interest in them, don’t interrupt or speak over them, nod along or laugh to show you’re listening, use body language and facial expressions to show you’re listening to them etc. Every time I have a conversation I’m thinking of all of these rules, whilst simultaneously trying to zone out background noise and concentrate on their words and processing the instructions correctly.

 Sometimes I seem rude or disinterested when people are speaking to me or finished speaking, as I don’t tend to react quickly because I’m still processing what they have said to me and what it is I need to do in response, so I have an almost delayed reaction to people speaking to me sometimes. Like if someone asks me to pass them something, I tend to stare at them for a second or two longer than I should do before I realise and locate what they want, or even I say “what, the diary?” To ensure I heard it right. Socialising causes a lot of anxiety because of all this, and because I fear getting it wrong or what will happen or what people will think if I mess up or I don’t follow a rule or there is a new rule I didn’t know in this situation. I tend to replay many conversations I’ve had at night or when my mind isn’t active in something and go over the details such as their response or facial expression and try and figure out whether or not they were annoyed or think I’m stupid by the way they reacted. This can cause me to avoid people a lot because I have come to the conclusion they think I am stupid and dislike me because of a facial response that I probably made up in my anxious brain. Because of all these cogs that whir around in my brain when I’m trying to socialise “normally”, it often causes me autistic burnout. 

Autistic burnout is essentially complete mental and physical exhaustion, where the body and mind cannot withstand anymore of the day and just cannot function. For me, this is usually after a day at work, or a day spent with friends and family who I don’t see often, or a day where I’ve met new people, or had a stressful experience such as shopping. Because I am a female with autism, it means that in order to look “normal” I mask a lot throughout the day (I will explain this further next) which causes me to just be totally exhausted and burnout completely. For me a burnout usually is me crying randomly, unable to speak or communicate my needs, becoming very sensory dependant - so I need soft blankets/toys, low stimulus environment like a dark quiet room, and something mindless to soothe me, for me I like to scroll through Twitter or social media’s and look at images or memes, rather than reading anything long winded. When I can, I usually just sleep off my burnout or have a long nap, but sometimes this isn’t doable so I have to just take some time in a low stimulus environment to reset my brain and recover myself. This usually means I have to unmask so can be difficult in situations like work or out in the community, which means I tend to hold it off as long as possible and then the burnout can be even worse and longer to recover from. 

Okay so masking. Masking is essentially mimicking other peoples behaviours in order to fit in and appear more “normal” and socially acceptable. This is more common in autistic women and girls but can be seen in all genders too. This is a skill that most people learn at young ages, not just those that are autistic, we learn that behaviours are not acceptable either by doing them or seeing other people do them, and we learn not to do this, such as biting or hitting people in anger, so we stop. In autistic people, this means that when we realise people don’t like the things we do because we are autistic, we mask them. It’s essentially like pretending to be normal in order for you to not be treated differently or thought of as different. I don’t really mask in front of my immediate family, but I do in front of grandparents or my friends until it becomes too much and I have to unmask. I don’t mask at all in the community alone because if flapping my hands and stuttering or humming helps me feel safe and sane then I will continue to do so because I am autistic. Whereas at work, I mask all day because I have to. I work with children with challenging behaviours in a children’s home, which means that if I was to display my distressed autistic traits all day, this would cause problems with the children I work with and with my coworkers and I would essentially seem like I am not capable or able to do my job. This can be difficult as it means that when noises or environments are too stressful, I have to use a lot of mental strength and energy to hide this fact and put the children in my care before my needs. It also means that I have to put on a different mask of funny work Megan, who is sarcastic and jokes around because that is the Megan that people like and relate to, rather than the anxious, stimming and very socially awkward Megan I am most of the time. Now we all have different faces that we put on in the morning, the strong confident faces, the work faces and the supportive faces even when we don’t feel it. But for autistic people, masking is much more than this. I mask everyday in little ways, I force myself to make eye contact so people don’t think I’m rude, I hold and bite my tongue on topics where I am extremely passionate and interested in as I tend to bubble over and get too excited and into it, I pretend to understand people and what they say when I don’t really, or I laugh at jokes that I don’t understand, I do jobs that I don’t understand why I have to do because asking would make it obvious I don’t get it, I pretend to be interested in other peoples lives and comments even though I really don’t care but this is rude to admit. It can be tiresome and another reason for autistic burnout, or sometimes I have to unmask as it is becoming too hard and painful to carry on so. If I feel comfortable around someone I may begin to unmask slowly, sometimes I don’t even realise, but I may start to stim more around them or admit that I am a bit distressed or allow my face to show I am struggling rather than continuing to laugh and smile. 

There are probably a million other ways in which my autism affects me, from the little things like I don’t do simple everyday tasks because I find it illogical and stupid to do them, down to I physically cannot be in certain situations because it is impossible for me to function. But these are just some of the main ones that many people may not even realise I and many other autistics go through on a daily basis. 

Between 29th March and 1st April it is actually autism awareness week so I will be trying to do a few more autism posts but as I continue through my diagnosis process and through life as an autistic I will continue to write posts as I go along! 

Meg x

We Need to Be Talking about The Sarah Everard Case - My Story of Sexual Assault

 

The last week or two has been horrifically sad for many, the endless stories of women’s experiences with sexual abuse, violence and assault to prove there is no set scenario, person or place for an assault to take place has truly hit hard and home for many of us. And the response of the not all men brigade truly angering and disgusting as ever. 

It’s truly so, so sad that we as women and survivors of assault and abuse have to share our very personal and very painful stories of our pasts just to make other people realise how real and raw it is. And yet men (and even women) still have the absolute gall to tell us how to think or feel or that we are being overly dramatic for the fear we feel from strangers when we walk at night, or even in broad daylight. 

97% of women have been sexually assaulted. A horrifically high number that doesn’t even surprise me in the slightest. As a woman, nearly every other woman I know has been sexually assaulted or in the very least, harassed by a man. From being catcalled in the streets, spoken to inappropriately at the bar by a drunken arsehole, groped in a queue, all the way down to rape. Perpetrated both by a stranger or someone they knew. Myself? I’ve been sexually assaulted three times since I was 15. I’m now almost 23, and until this last week reading every horrific story and experience, I didn’t even know I’d been assaulted. And this isn’t a rare occurrence either, since speaking to a Facebook group I’m part of about these issues, I’ve realised that so many more women also don’t realise they have been assaulted or raped. They have lived in either denial for years, or even just that they didn’t realise what they did was an assault. 

Society has raised us to blame ourselves, to fill ourselves with shame and guilt about our experiences and convince ourselves that it is down to us and our actions and behaviours. In my own experience - I truly believed I was to blame for everything that happened to me, I believed I wasn’t clear, I believed I must have consented with my eyes or the way I spoke, or the fact I didn’t outright complain or say anything at the time or for years, must mean it’s my fault. Got drunk? Your fault. Wore a revealing or provocative outfit? Asking for It. Didn’t say no or try to attack them? Clearly wanted it. Didn’t say anything at the time? Made it up over time. Let them convince us? Must have wanted it secretly. Went back to their home? Well you clearly consented just doing that. 

When in actual fact what those statements say really is this: too drunk to consent and was taken advantage of. can wear whatever you want but a man couldn’t keep his hands to himself. You didn’t say no or attack because you froze and were too scared to realise what was happening. You didn’t say anything at the time because you didn’t think anyone would believe what happened. Men think convincing a girl is acceptable, and guilt tripping us is okay when it is still assault. You can go to someone’s house and still revoke your consent. 

Consent is simply not taught enough to anyone. Men don’t realise that convincing a woman to have sex with them when they clearly don’t want to is assault, and truly believe this is not a bad thing - yes they should have more common sense than that but also, who is teaching them this is wrong? Men allow their friends day in and day out to go about their shitty creep behaviours without a word. From allowing their catcalling and laughing along, to turning a blind eye to their mates controlling behaviour of their partners, to joining in with conversations in the group chat about women and so many other things. When you allow your friend to get away with one shitty behaviour towards women, they see this as acceptable and something they will always get away with, and keep going and going until they are finally caught and reprimanded, and most of the time that never happens. So they continue to treat their girlfriends and women in their life like shit, because well, whose going to say something to them? And women don’t realise they don’t owe anyone consent. I sure was never told I didn’t owe my boyfriends sex, or that I could take back my consent, or that I couldn’t give consent when I’m too drunk or unconscious. And this lived with me until it finally happened to me. And still 7, 7 and 3 years after my assaults I believe it was my fault. Because instead of thinking about the one thing they did that they shouldn’t, I think of all the things I should have done that I didn’t. 

It’s taken me a long time, years in fact to understand the true accounts of what’s happened in my past. And still I struggle to accept or see myself as a victim of sexual assault. Because I feel that I got off “too lightly”. Instead of being saddened that these things happened to me at all, I feel as though I cannot possibly be a victim because this wasn’t some gory, violent rape by a stranger in an unsafe space. But assault is assault. Whether it’s a stranger forcing themselves upon you in the street, to a boyfriend coercing you into a sex act because they feel owed, or a guy you’ve been talking to having sex with you despite you being too drunk to consent or even fully conscious throughout. No matter how or what happened, you are a victim of sexual assault, and it is perfectly okay to take your time to come to terms with that and deal with it in your own way. For me, that was denying these things to ever have happened to me until it came exploding out of the little box at the back of my brain. And then finally in the last week in my realisation and acceptance of what happened, I made the call. I called my local SARC in Nottingham which is the Topaz Centre (sexual assault referral centre) and enquired about therapies available, and after two short phone calls with some lovely and helpful ladies, have been added to a waiting list for therapy concerning my historical assaults, alongside a meeting scheduled to discuss whether or not I want to report these and help if I do. 

It is not easy to accept and come to terms with what has happened in our pasts, and finally casting away those deep filled emotions of guilt, shame and blame and realising what truly happened. But it comes. And what you do next is completely down to you, I know women that accepted what happened to them as soon as it did, and never sought help but decided to just move on with their life and accept this is what happened, and I also know women who have sought help and intensive therapy for what happened to them. Both is fine. Anything you do to deal with this is your choice. But if you need help, it is there for you to take. A quick google of your local SARC or even a call to a charity helpline for advice will get you directed in the right place and get the ball moving and every step of the way you should be proud of yourself for what you have achieved. 

You are not alone and you are not weak or to blame. You are a victim and you are brave and you are not defined by your past. 

My inboxes on my social media’s and my email inbox will always be open if ANYONE reading this needs to talk, rant or just speak to someone. I promise I will listen and support in any way I can as a fellow human and victim. Even if you just want to get it out and don’t want me to reply just say “don’t reply to this”. That is okay. But please, never feel alone in your struggles. 

Meg xx

Find your nearest SARC https://www.nhs.uk/service-search/other-services/Rape-and-sexual-assault-referral-centres/LocationSearch/364

Nottingham SARC Topaz Centre 0115 941 0440

Rape Crisis national phone line 0808 802 9999

Victim Support for Rape and Sexual Assault 08 08 16 89 111

Or contact your GP or local GUM sexual health clinic by Googling their numbers to discuss STI and pregnancy testing 

The Problems with Society and the Media in Glorifying Mental Illness

It’s no secret that the media we consume and today’s society has the tendency to glorify and romanticise mental illness and the symptoms of people with serious illnesses, and has done for a long time. As a kid I remember one show that vividly portrayed mental illness, and the symptoms of depression, anxiety, eating disorders and even psychosis in a way that, not obviously glorified it, but made the show and the characters show their struggles in a way that was “quirky” and almost “cool”, and it’ll be no surprise to people of a similar age group to myself when I say this show was, Skins. In particular the characters of Cassie from season one and Effy from season three. (The less said about season 5 the better let’s be honest) 

In skins season one, Cassie, one of the main members of the group has very obvious struggles with an eating disorder, Anorexia. She is always seen as the “quirky” one, the quiet, away with the fairies character who because of this is quite loveable and almost ‘cute’, a famous phrase of her that was always layered over a grungy black and white image of hers was “I didn’t eat for three days so I could be lovely”, that circulated the tumblr era for years. It was my first experience of “pro-ana” media growing up, and as someone who also suffered with anorexia at a young age in her teens, she was almost an idol to me, a way of me seeing I could be loved and “lovely” if I also didn’t eat. The lack of recovery or serious professional intervention storyline with Cassie is a poignant reason this show was so toxic, it enforced the sadly truthful portrayal that not many people with an eating disorder fully recover or receive truly impacting treatment in their care. In season three, Tony’s younger sister Effy and her friendship group become the focus of the show and as the series goes on it becomes evident that Effy is struggling with manic depression and after attempting suicide and leaving psychiatric inpatient care is shown to be in a strict recovery regime. My biggest annoyances with the Effy storyline is she is seen to be more loveable when she is unwell, and is deemed interesting and desirable to men who wish to “fix her” in a cutesy romantic manner. 

Speaking of skins and the era of tumblr blogs, tumblr and social media’s in general have always been a toxic wasteland for glorifying mental health conditions and symptoms. With pro-ana accounts (accounts that show images of extremely skinny bodies or quotes that encourage starvation etc) and images of self harm rife back in the day it’s no surprise I was myself led into the life of self harming and disordered thoughts around eating in order to feel “beautiful” and “worthy”. 

Although it is a positive thing that mental illness is being portrayed more often in the media, and can be argued that it brings more awareness to debilitating conditions and reduces the stigma of opening up, there is also a downside. How many times have you opened up about your condition or illness and the symptoms you present with to be greeted with the painfully annoying response “oh I’m a bit like that!!”. Personally I’ve received this more times than I care to admit and have to stop myself from putting my head through a brick wall each time. Because of people realising how common mental illness is, some people seem to almost cling onto it and think well maybe that’s me? And of course, that can be a good thing too, it may help people realise their symptoms and the underlying cause of them, after all that’s how I realising I had bpd and autism. But it can also mean that people take very normal human traits and assume they have a mental illness. 

For example, everyone feels and gets nervous, job interviews, speaking in front of crowds, first day at a new job, you name it, nearly everyone will feel anxious about this. After all, anxiety is an emotion that is perfectly normal to feel. But where people go wrong is assuming that they therefore have an anxiety disorder because of their very normal experiences with anxiety. Anxiety becomes a problem and a disorder when the symptoms start to cause serious distress, discomfort or disrupts your ability to do everyday activities. So let’s say two people have to speak separately in front of a crowd, and are both understandably anxious about having to do this. The individual who is anxious may have sweaty palms, worry that they will forget what they have to say and think of the worse situation, but they take themselves on stage, speak to everyone, come off stage and move on with their day. Whereas the individual with an anxiety disorder may experience the same symptoms, but instead of going on stage anyway, they may have a panic attack or begin to hyperventilate and be so anxious that they are unable to go ahead with their speech and have to cancel last minute. Where both individuals experience symptoms of anxiety, only one of them is impacted in a way that affects their daily life and abilities. 

When mental illnesses are portrayed in film and TV, we usually see a very dramatised portrayal to make for a more interesting watch. This can also lead to false assumptions on mental illness, and believe that everyone with that condition acts that way. This can be especially prominent with borderline personality disorder, psychosis, schizophrenia and other conditions. It is a well renowned stigma and stereotype that individuals with bpd are manipulative, expert liars and overall bad people, which of course is not true. In many portrayals of bpd in the media, it is someone who manipulates and lies their way out of trouble, or the very common “psycho ex girlfriend” trope, where the traits of abandonment issues, extreme emotions, suicidal tendencies and others  commonly associated with bpd are used to make us appear to be crazy, a nuisance or a problem. 

This is also a prevalent issue with other conditions of course, autism for example is a common one, with characters like Sheldon Cooper from the Big Bang Theory, Forrest Gump, Sam from Atypical and many others, which further enhances the problem with females and falling through the cracks of the diagnosis criteria for autism. These characters make people assume that you cannot be autistic unless it is extremely obvious in the way you speak and act, because not many producers and directors see a female with autism who is visibly “normal” and who masks their autism so well as a, well, boring character. It is much easier for them to cast a neurotypical male and have them act out stereotypical autistic traits such as not understanding sarcasm, being blunt and to the point without much empathy or interest in others emotions, rigid and black and white thinking, obsessions with specific objects (fucking tRaInS) and a general “awkwardness” about them. 

Don’t get me wrong, mental illness can be portrayed positively in the media, and there are positive examples of those with influence speaking out, such as Demi Lovato and her openness about her struggles with bipolar, addiction and bulimia, or Carrie Fisher and Stephen Fry, both also diagnosed with bipolar disorder. Chrissy Tiegan advocates for her struggles with post partum depression, Lady Gaga has also openly discussed her experience with PTSD following her rape ordeal when she was 19. These people can often be the butt of jokes and used as comical anecdotes in film and TV (e.g Britney Spears very public breakdown, Lindsay Lohan and her substance misuse addiction etc) but it’s important to remember their bravery in opening themselves and their very vulnerable personal lives and struggles to the public eye, something many of us struggle to even tell our own families about. But despite this, mental illness is way too often either romanticised to be cute, quirky and different and funny personalities, or even worse, demonised to the public eye that further enforces stigma and shame - a prime example is white terrorists, where instead of just outright calling them what they are, terrorists and murderers, they are named by their illness or categorised as mentally unwell, schizophrenic, or psychotic. But that’s a whole other post. 

I guess the moral of this almost ranting post, is yes use mental illness in the media to encourage you to educate yourself and further your knowledge on mental health conditions, but don’t assume the life that one character portrays is the same for everyone with the same diagnosis, or assume that someone in your real life can’t possibly have that illness because they live a starkly contrasted lifestyle to the character on your screen. Essentially, take tv shows and films with a pinch of salt and use your own knowledge and education to help others to not make this mistake either. 

Meg x