I had ended up spoiling another day out by becoming stroppy, miserable, quiet, walking off by myself and this meant, yet again, we would all go home early, upset, and frustrated. I remember this happening often as a child into my early teens. Having a terrible sickly feeling in my stomach because I knew I had done something wrong; but I really didn’t know what, I wasn’t trying to be naughty. Internally, everything around me just didn’t feel right, things didn’t make sense. An unsettled feeling ran through every vein of my body, making the urge to escape almost tangible. I wondered why I couldn’t just be “normal,” whatever that was, enjoy myself like everyone else. I didn’t understand why I felt like this, so how could I ever communicate my feelings to anyone else?
The first word people always described me as was shy, but even when I didn’t talk very much, it’s not how I felt. My school reports would, without fail say I was a quiet, sensible pupil and I would receive an A for effort regardless of the grade next to it. I think, this also meant I was seen as mature, coping fine, no cause for concern and therefore could be trusted to run errand for the teachers. For me, being asked to do things I wasn’t particularly comfortable with, like photocopying, taking papers to other teachers, handing things out, doing demonstrations with the teacher in P.E became everyday add-ons to my school life and made it even more stressful. I did make the most of the quiet moments away from the classroom though when I went on those solo quests around silent corridors and empty grounds. I didn’t notice how much I needed the time to recharge, because most of the time I was struggling, problem was, I didn’t even realise. I often felt frozen, with everyone else moving around me. I didn’t always get on with my work, I wasn’t continuously quiet, because of being particularly shy and not having a lot to say, but because I was overwhelmed by my surroundings and the people. Sensory overload was a major issue, I had to divide and conquer when it came to concentrating, I mean, just trying to hear, absorb, understand, carry out, complete what the teacher was asking of me seemed too much before I even began sometimes, so there was simply no room for talking too, because my brain couldn’t organise it all, in the time given. Feeling rushed, constantly unprepared, I just didn’t have the space I needed to process properly. I would be terrified of messing up, become anxious and imagine myself running and hiding somewhere. I think internalising my feelings is a big part of why I was able to go through school undetected as Autistic. My eagerness to learn, longing to fit in and stubborn determination to please, allowed me to pass under the radar. Also, the fact that I was a girl and the fact I learned how to mask successfully.
Masking is the autistic process of trying to hide who you are, by supressing movements, interests, behaviours which are seen as different and don’t necessarily “fit in” with what is expected. Autistic people have become particularly good at it, but obviously repeating this, often daily, comes at a heavy cost to both our physical and mental health.
It’s a strong human trait to want to fit in, to feel accepted, early on we learn the easiest way to do this is to behave like others. We naturally copy other humans. It can also be a basic survival technique, to get through life, school, everyday challenges, to communicate with people. Both externalising and internalising emotions can make us “stand out,” for varied reasons and attract unwelcome attention when we just want to be left alone.
An interesting revelation I’ve discovered only recently is how I chose an extremely popular, confident best friend in school. I remember peers and teachers commenting how it was surprising we were even friends, because we appeared so different. Things make more sense looking back, with the knowledge I have now, I realise she was my social shield in many situations, my voice, I allowed her to talk for me. With just a glance, she would know, I was struggling, an unspoken language we had unknowingly created between us. I found myself blending into the background, finding little bouts of energy now and again to join in, trying to convince others and myself that I could be “someone who knows how to socialise” but it was always very awkward, looking for reassurance, never truly feeling confident or real, the words I spoke felt scripted, as though I had borrowed them from someone else. It didn’t feel good, I didn’t feel genuine, but I had no idea what impact it was really having on me.
By the time I got to college, I had convinced myself I would fit in, make friends, learn lots of new things, it sounded great, I got to choose the subjects I studied! I was wrong, it was awful. I had no real friends, I clung onto people who were mean to me. I had no sense of self; I found the increased number of people to be around overwhelming. I didn’t fit in; felt completely lost. I remember often feeling so disorientated walking around campus, it was like I was dreaming. I began losing confidence in subjects I had been so excited about learning to a higher level. I would lock myself in the girl’s toilets for hours and hours because I simply couldn’t face people or talk to anyone. I felt frozen, watching the time go by, willing the bell to ring for home time.
Being good at and enjoying sport has always given me a positive outlet to disperse many frustrations of not understanding why things bothered me so much. Why my senses would get distracted so easily causing me distress; noises, smells, lights which others didn’t seem irritated by. Questions asked when I was already experiencing sensory overwhelm would cause me physical pain. But I just didn’t know what was happening, so panic would also set in, asking myself “Why are you becoming so distressed, why are you so different to others”? I couldn’t explain why I felt tiny details around me so intensely, that no one else seemed to even notice, yet at the same time I would miss things, eventually understanding which others had seemed so bothered by.
Unsurprisingly, years of masking, had led me to think this way, which ultimately meant at some point it would all be too much for my brain. I didn’t know what was happening and couldn’t put in place anything to help. I felt constantly confused and very clearly because of that a failure, at life. I didn’t believe I worked properly, increasing anxiety meant I started spending more time alone at home, I found it really exhausting to be around my family for any length of time. I gradually couldn’t cope around anyone for any significant period, finding it near impossible to leave the house. I had accepted that I would never get on with anyone, never be able have a proper conversation, that I was just too sensitive, weak, a burden, stroppy, lazy, unlovable. I simply burnt out, too much pressure from where I worked was the final push. I imploded, isolating myself from family and friends, I had absolutely no interest in anything. Depression, anxiety, and OCD slowly, severely consumed my mind and body, filling me with complete hopelessness, a vicious cycle which lasted for 7 years.
My Niece was born. After a few years, my sister began spotting similarities between our behaviour as children, she researched thoroughly and finally mentioned the word autistic to me for the first time. Specifically, how a pattern was forming for many women, who had often been labelled as shy, quiet in school, completely overlooked, went on to suffer with mental health issues, often misdiagnosed, various treatment not really working properly, then only when, unsurprisingly reaching crisis point, being diagnosed as autistic. I’ll be honest autism wasn’t really something I knew much about at this point, or initially took very seriously because I remember thinking, surely someone would have mentioned this by now. Also, I was under the misconception like many that it was very much boys who (I know we have all heard it before, but that’s very much the point!) are excellent at maths and love trains… (Just to be clear, I’m none of those things!) were autistic, but this is the stereotypical outline of autism the media portrays to us, it is incorrect.
Being 35, a woman and quite honestly exhausted, I didn’t have the energy to even contemplate the possibility that I could be autistic, it just felt mammoth, beyond my realms of thinking…ever, because at that time, lifting my head was hard enough. I didn’t want to be here anymore.
However, the word stuck in my brain like a gnawing little beaver, determined for me to find out more. For the first 35 years of my life autism had never been mentioned, not once. I had always felt misplaced, an inconvenience to my family and the people around me because I often needed things to be a different way to most, to just function, be ok. Trying to “get on” with things, but really struggling because they didn’t feel ok to me, they didn’t feel right to my very core, my words were completely inadequate compared to how I felt, so it became easier to be silent. Feeling uncomfortable just became natural to me. I guess my restrictive eating habits, more extreme as a child (such as eating 8 biscuits for breakfast or only pizza and salad cream for years) but still extremely limited into adulthood were me being “fussy”. Following rules, collecting items, and being organised were me being “a good girl.” My keen sense of justice, inability to see things differently, unable to back down simply me being “rude.” Not speaking, walking off and often blank expression were me being “stroppy.” My compulsion to wash my hands regularly, deciding not to eat animals from an early age and distress at anything dirty were just me being “over sensitive.” Yet, these didn’t feel wrong, or bad or unreasonable to me. When you feel things extremely deeply and differently but are told they are not valid, or they are shrugged off like they don’t matter, eventually it becomes increasingly hard to trust yourself.
Realising that I could be autistic and having a diagnosis happen in the same year, it was obviously a lot to process. After all the years of not knowing, it’s strange to me how clear things have now become. I ask myself often “How did you not know?.” Sometimes the most obvious things are the hardest to uncover or we are taught “different” means “wrong” (wrongly) and I believed this, I simply wasn’t looking in the right place, I thought I needed fixing.
Far too many autistic people, reach crisis point, before they are taken seriously and finally diagnosed as autistic, which is tragic. I was no different, but I will forever be thankful to my sister for finally realising, because I know I never would have and to the counsellor who I happened to start talking to around the same time. I will never forget how he validated my thoughts, it meant everything.
Autistic people shouldn’t hit breaking point, before help is finally available, acceptance needs to start early, changes need to happen, many autistic people are being diagnosed too late, as adults, particularly women, by which point without doubt irrevocable damage is done. And why? Because we have brains which are wired slightly differently? My brain alters the way I absorb information and process the world and the people in it. I interpret noises, smells, colours, details, conversations, and emotions so vividly. My brain works at many different speeds, depending on the subject, environment, stimuli. This doesn’t make me special, it makes me, me. It doesn’t make me wrong; I don’t need to be fixed, altered, changed in any way. Autistic people need to be listened to, treated as human beings, and respected just like everyone else. We all learn uniquely.
I’m beyond angry and sad that autistic people are made to feel like this because of societies expectations and rules, constant questioning, criticising and demands of this “perfect” human being, falsely projecting “how we should be.” Forcing us to mask, go into hiding because won’t be accepted as ourselves. It’s not surprising life becomes overwhelming on a regular basis. The clear reluctance and ignorance of people to listen and learn from autistic people when we are here, so many of us, handing out, willing to share all the information ever needed to make things better so frustrating!
There are many but, one of the most common misconceptions about autism is that “everyone is a little bit on the spectrum.” No, they are not. Think of it as a colour wheel and only all actually autistic people fit on it somewhere, we are all individuals, unique, we share characteristics, struggles and talents, equally we differ in these areas too. Diversity, from all over the globe.
I am trying to look forward as much as possible, not dwell on the years of not knowing. I didn’t know for 3 decades that I’m autistic, so I couldn’t have adapted ways to cope better, I simply didn’t have all the information. It’s only now, as a late-diagnosed autistic women, I’m starting to discover so much about myself and how, why I see the world the way I do. It’s not always easy, sometimes it’s extraordinary. Social interactions are exhausting, even talking on the telephone, I need a lot of time alone to recover. If I’m not carefully managing my surroundings, taking regular breaks, and prepared with my coping strategies set to intervene at crucial times then it will lead to a shut down or melt down. I certainly don’t always get it right. Routines can become very intense and when I’m hyper focused, my basic needs can get forgotten about, leading to anxiety. My noise-cancelling headphones are a lifeline and have now become an extension of my ears. My brain constantly entertains and surprises me by what it can do, joining up pieces of random information and making my own connections between them, remembering whole conversations word for word. I see faces, repeated patterns and dogs in everyday objects, nature, materials, wallpapers, clouds. I have an unwavering need for the truth and justice, I feel emotions intensely. I’m wonderfully creative and my imagination is diverse and incredibly vivid.
Small daily adjustments I have in place, finally understanding myself, talking to my family more and learning every day from other autistic people are fundamental in helping me to live a happier life, in a world, I know will always feel too much, but without question I am valid, I am worthy, I am autistic.