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