Before diagnosis

I wrote this for an e-magazine (now defunct) a couple of years ago which is so it was never published. I finally got around to publishing it on my blog.

Before I realised I was Autistic. I was already doing things which helped me cope, these things helped me cope as an undiagnosed Autistic. I used written communication as much as I could instead of speaking verbally to people. I remember writing letters, emails and dot point statements to help me communicate myself articulately to people. My mind often went blank in situations of stress and anxiety. I knew I was much better at written communication, so I used it as a way of communicating with people. It was only once I was diagnosed that I was truly able to embrace my preference for written communication and got involved in the Autism community where written communication is the norm.

I remember being very socially avoidant especially if the social event was likely to be unpredictable and go longer than I could cope with. I limited how much socialising I did, to twice a week or so. This varied depending on my level of coping. I would be exhausted after the social event and have to recover. I remember feeling like the odd one out as a result and others saw me as anti-social and rude. I hated myself because I couldn't cope socially. This happened time and time again. I did enjoy socialising but reached a point where it was too much. I would get grumpy and easily irritated at the social outing. I did not know why. I felt like others saw me as rude and ungrateful for their company. I felt I drove people away as a result. It was upsetting. I liked socialising and enjoyed the energy I felt from others whilst I was socialising, at the same time I found the experience intense and overwhelming. I could feel all the tensions and energy in the room from all the people and this would become acutely painful after a time.

I distinctly remember sitting in my room (while I was at Uni) watching my mobile phone ring as one of my friends called me about going to her party. I had texted her to cancel my attendance as I was not up to going. I could not face talking to her as I knew I would be pressured to go to her party. I did not know how to explain myself or put up a boundary so I avoided dealing with it. I felt so much guilt for doing this, but I did not know what else to do. I believe this led to loss of friends which I found heartbreaking. I used avoidance to cope which I disliked doing. I did not know what else to do to cope. I know how to deal with it now due to understanding myself better.


Somehow I managed to do a full time BA/BTeach degree and manage socially but not without lots of insomnia, stress, anxiety, illness and tears/meltdowns. It was difficult, overwhelming and exhausting. I ended up having to drop the teaching side of my degree after two years. I didn’t cope with the full load. I completed the BA (Visual Communication). It was the art side of my degree which kept me going. Art was and is my passion. I find it very therapeutic. It took me a number of years to complete my teaching degree (part time long distance), but I did it. It was worth pursuing my degrees.

I learnt darkroom photography in high school, it opened up a whole new world. I was amazed and obsessed with photography. I loved watching the photo develop in the developer fluid, it was a visual stim for me. Such an amazing thing to watch. It never ceased to amaze me how a blank sheet of photo paper could produce such a beautiful image. I understood how it worked, of course but the sheer beauty of watching an image come to life had me hooked from then on! I spent as much time in the darkroom as I could. It was a beautiful, dark (low light) and quiet environment away from the business of the world. I remember many times stepping out of the darkroom back into the world and desperately wanting to go back. The world seemed so much brighter, noisier and more chaotic than I last remembered.

When I was in high school I came across a book in the library quite by accident. I borrowed this book, it was called 'Wise Highs' by Alex J. Packer. It changed my life. I remember looking through it and coming across a section on sensory deprivation. I was intensely drawn to the idea of sensory deprivation. I longed to try it out, but did not have a wardrobe big enough and I couldn't figure out how else to do it with privacy with the rest of my family around. I put it away in my mind to refer to when I had a chance to try it out. Fast forward a couple of years and I'm in my first year of University. I'd left home for the first time. I was struggling to cope with all the changes, struggling to adapt and manage on my own. I had recently moved out of an abusive boarding situation into a house with other women my own age. The room I rented had a big roomy wardrobe. I remembered reading about sensory deprivation from 'Wise Highs,' and decided to set up the wardrobe as a sensory deprivation space. I got excited because now I was finally able to try it out for myself. I set myself up in my wardrobe with pillows, blankets and ear plugs. I forgot the world exists. I let go of everything. I let my mind drift and dream. It was a relief to hear and see nothing. To escape from the busyness of the world. It was very peaceful and calm. I stayed in my sensory deprivation space for a decent amount of time. I can't remember exactly how long. I emerged feeling peaceful and ready to face the world again.

Since that first time of trying sensory deprivation, I have set myself up a sensory deprivation chamber using various wardrobes wherever I have lived. I craved it. I longed for it. Since my diagnosis of ASC and fully understanding of myself, using sensory deprivation makes so much sense. I instinctively knew what I needed before I understood (I knew I was different, I just had no idea why) my neurology and did what was best for me. It helped me cope and face the world again many times. I am so grateful that I accidentally found 'Wise Highs' in my high school library all those years ago. I have now bought myself a copy of the book as it has other great stress relieving ideas.

I remember experiencing meltdowns many times and having no clue why I did it or what it was. I found it so embarrassing when I lost control of my emotions so easily. I felt my difference to others intensified in those moments. I did not understand why it happened. I tried so hard to stop myself, to control it, but I always failed. I felt intensely raw and exposed whenever I lost control, but I always felt better after having released everything emotionally. I figured it must be good for me. I gave up controlling it after awhile and started embracing that I experienced the world in an intense, real way compared to others. I thought I was one of the few real people in the world as most people around me seemed fake. This was my explanation to myself which made the most sense. I felt intensely drawn to people who gave off a real vibe. They gave off a different vibe to others. Unfortunately, they often did not reciprocate. I felt like I was in a desert without real connections at times, at times there would be brief moments of intense, amazing connection with a person but it was rare. I thirsted for it and became obsessed with finding connection in others. I became obsessed with finding the perfect friendship. This unfortunately came across as desperate and clingy, so I would often end up feeling alone and unwanted.

I processed social events with my Mum before I met Atrus. She was very understanding and helpful. I remember her advice to me was to ask people lots of questions about themselves and their lives, as people like to share things about themselves. The idea was to keep people talking so I didn't have to talk as much.

I remember spending many hours talking with Atrus, my husband after a social event analysing and processing it together to help me understand where I went wrong and where I could improve. He would point out things I hadn't realised I had done and then I would get upset.

I spent a lot of time analysing social interaction and trying to understand why people what they did. I perseverated on it. I have experienced broken friendships, people have cut me out of their lives for no apparent reason. It was very hurtful and confusing for me. I felt strongly drawn to certain people. Now I accept and understand people are unpredictable and, it is not my issue. They chose to cut me out. It is their issue. It is a reflection on them. I don’t need people who treat people this way in my life. I choose to surround myself with people who understand and accept me.

When I socialised with others I either talked way too much (anxiety driven talking) or not at all. This depended on the amount of people I was interacting with at the time. One on one I talked a lot. In a big group I could not get the words to come out of my mouth no matter how much I wanted to say something. I have experienced this at different times in my life. Especially at school. School was tough. I was vulnerable to abuse because I was not able to speak up. It was isolating. If I am in a group of people I don't know well, e.g. a workshop. I will find it very difficult to speak and share my experiences. In school everyone thought I was shy because I didn't speak much but I wasn't shy. I just couldn't talk no matter how much I wanted to. I often had a lot to say but I couldn’t verbalise myself. I know now this as selective mutism. This has improved with age, confidence and maturity and understanding of how my brain works.

In Primary school, I cried easily over anything unexpected. I earnt the name 'cry baby'. I hated it. I had no control over my crying. It just spilled out of me uncontrollably whenever I felt overwhelmed and lost control of a situation. E.g. Playing tag with the other kids. I loved running away from the person who was 'it' but if I was tagged and became 'it' I would soon start crying because I couldn't catch anyone as I wasn't very fast. I took the game very seriously and personally, others would run away laughing and I would start to feel overwhelmed with emotions and start crying. I would feel left out and like I would never catch them and be 'it' forever so would just start crying (meltdown) instead. I soon got a reputation as a cry baby. Other kids were hesitant to let me play with them as a result. This further isolated me. I hated it. I wanted to belong but my big, intense emotions took over so start to cry. As I grew older I learnt to control my crying and hid it well. I don’t cry as easily now and wish I was able to.

I wasn't able to cope with driving, ever. It has always been mentally and emotionally exhausting for me. I would get highly anxious and confused whenever I attempted to drive in stressful situations. I have had driving lessons which helped me learn how to use the car but that didn't change my brain's response to too much stimuli and having to do many little actions with my body in a short amount of time. This means I can drive very well on a quiet country road with little traffic but I'm hopeless at driving when I try to drive in more stressful situations with lots of traffic.

I found the idea of full time work overwhelming and it filled me with anxiety. I knew I was intelligent and able to work but I didn't know how to work out how to fit a job into my life in a way I could cope with. I was very work avoidant. The part-time work I did do, I often found mindless and boring as soon as I learnt how to do it. I get bored easily. I have always wanted to work in something which engages me and where I never stop learning. I have no idea what type of work is for me yet. I am going to work out my career path. I found the social aspect of the work environment annoying and confusing. I was often left out of things as a result. This added to my anxiety and stress levels. It was partly for this reason I decided to become a Mother, because I did not know what else to do with myself. I felt I was useless to the world, that I had nothing to offer. I thought at least I would be able to be useful to one person, a child.

I became obsessed with getting pregnant. I was completely unprepared for how tough motherhood would be. I was naive and immature with a number of issues of my own. When I was not able to get pregnant easily I became even more obsessed and had meltdowns each month I did not get pregnant. I was so focused on getting pregnant, I did not think of anything else. I researched improving fertility and diet. I finally did get pregnant after a year of trying. Then I focused on researching birth and labour.

I researched and chose to have a homebirth. Which meant I had control over my labour environment and there were no strangers in my space. I remember feeling terrified and anxious at the thought of going to hospital and having to deal with strangers in my most vulnerable moments. I could not cope with the idea of going to hospital so researched intensely about homebirth and realised it was best for me and my child. I had two trained midwives present. Everything was fine for both my son and I.

The adjustment to motherhood was difficult and traumatic. Suddenly this tiny person needed me constantly, cried a lot, slept unpredictably and was messy. It was incredibly overwhelming and overstimulating. I did not know how to cope, somehow I survived those early years. I was highly anxious 95% of the time until my son was nearly 2. I was always on high alert. I could not relax, I did not allow myself to. I had no idea how to relax and wind down anyway. My son’s cries sent my anxiety sky high and there was no escaping his cries. I had to attend to him and calm him down whilst almost in a state of panic myself. It was extremely tough and overwhelming. I had no understanding of this within myself so was not able to communicate this with anyone. It was extremely lonely and isolating. I carried on in this high alert state for almost a year. The cracks started to show as I could not manage to keep myself together in such a high level of anxiety for so long. I was extremely irritable, stressed, anxious, depressed, suffered from insomnia and just could not cope with much. I was a mess. I went to see a therapist for PND. She did CBT with me and taught me about body relaxation. She was helpful but I realised after a time, I did not click with my therapist as well as I would like to. I felt she wasn’t really helping me either. She thought it was how I parented my son was the problem, which it was not. I knew instinctively it was something else and decided to stop seeing her. I saw another therapist. She wasn’t very helpful either. Her suggestion was to put my son in daycare to allow me time to myself, which in hindsight would have helped me but I was not open to the idea, yet. No one had taught me how to manage my stress and anxiety levels in a way which suited me. I, myself, did not realise what I needed, I just knew I needed some other type of support/help than what I had found thus far.

I was desperate. I was in such a bad place. I was not coping as a Mother at all. I was determined to find the right support. I knew there was something different about me as I have always felt different from others. I decided to read about Aspergers and females. My Mum had suspected I was on the spectrum for a while but I had been in denial about it for a few years. I finally accepted I might be on the Spectrum and read ‘Aspergirls’ by Rudy Simone. My life changed when I read her book. I no longer felt alone. My life made sense, finally!

I have many different stims I do, some are body stims, some are visual stims, some are motion stims, some are aural stims. I have been doing many of them my entire life. I learnt to hide my stims as I got older so when I first realised I was Autistic I had trouble trying to recognise if I stimmed at all. Now, I can see many things I do which are stims but are fairly hidden, most of the time. I am unlearning to hide them, to embrace them and do them when I need to.

I spent so much time analysing myself and wondering why I was so different. I worked so hard to improve myself and trying to be more aware of my limits so I could grow and improve myself. Yet I always fell short. I was so aware of the gap between myself and others. So aware of how much I struggled to do everyday things which seemed so effortless for others to do, yet difficult for me. I turned inwards on myself. Hating myself for how I was. Hating the fact I couldn't cope with things others could do. Hating the fact I always struggled to connect with people. I had very little confidence in myself and who I was. I was in a dark place. My diagnosis changed this. I began a journey of understanding, self awareness and self-acceptance. My diagnosis changed my life for the better.


I have been very open about my diagnosis with the people in my life, choosing to use my diagnosis as a way of helping others understand me. This often backfires unfortunately. People sometimes assume I'm using my diagnosis as an excuse for my supposedly bad and avoidant behaviour. What they don't realise is I was like this before my diagnosis. I'm diagnosed now and I finally understand myself. I have the knowledge to work out ways of helping myself to cope better and language to articulate myself to others. Self-acceptance has played a huge part in me being able to move forward as a whole, yet imperfect person.

The idea that I'm using my diagnosis as an excuse is irrelevant now. I realise just how much Autism coloured my life was prior to me even realising it.

I and other Autistic people need people to understand this. We don't need people assuming we are using our diagnosis as an excuse for our differences and behaviour. We need acceptance. We need understanding. We need support. The diagnosis and new understanding of oneself is an explanation, not an excuse.

I am aware some people may use Autism as an excuse for their behaviour but they don't need judgement. They need understanding. Perhaps they don't know how to cope better and need support for figuring out a better way. Perhaps they find change hard and overwhelming. Whatever the reason, telling an already vulnerable person who has likely spent years feeling alienated and different to stop using their diagnosis as an excuse is not supportive or empathetic at all.

When people tell me I am using Autism as an excuse or I need to try harder to overcome my disability, they don’t realise how ignorant they sound and how hard I have worked to become the person I am today and to cope as well as I do. It’s can be quite insulting and undermining to someone on their label acceptance journey but I believe a little understanding can go a long way.

Written communication and marriage

Atrus and I realised that written communication works best for us. We end up getting too stressed, and emotional when we try to deal with issues by talking verbally about them. It is easier for both of us to text or email each other and discuss it through written communication. Ironically, we worked this strategy out together whilst texting each other while Atrus was at work. Atrus told me via text that he prefers to communicate via written communication too. This takes the pressure of us to communicate verbally. I think working out our issues using written communication will help minimise how much stress and upset we have relationally.

I find it difficult to communicate verbally in stressful, upsetting and tense situations. I end up in shut down. Instead of responding how I need to and staying calm. I feel the intense pressure to communicate verbally, so I talk in a reactive way, whatever I'm thinking about comes out which is often rude, hurtful and very blunt. Which of course makes everything worse between Atrus and myself. Or I just end up crying unable to talk coherently. It's horrible for both of us. We end up reactive and in a vicious cycle of emotions and triggers. 

We have made a joint decision to text or email each other when we need to discuss things or when one of us has an issue about something. We will work it out that way. I think this will revolutionize our relationship. I'm feeling incredibly relieved that we worked this out together. It has taken so much pressure off me to not have to talk when I am not able to. I am very grateful that Atrus and I are similar in how we do things.

Written Communication: why talking is diffcult for me

Written Communication: why talking is difficult for me

Written communication is my forte. It is how I communicate best. I realised this awhile ago after realising how difficult it is for me to speak in high stress or tense social situations. I have always prepared notes to refer to during a phone call, Doctor's appointments, interviews, and whatever else I need notes for. If there is an option to email a business or person I email them, rather than phone. Writing is far easier for me. I have time to form my ideas into words and articulate my words how I need to in a sentence. It can be chaos at my place, but at least my email will be well written and I will have clearly communicated what I need to whomever it is I am emailing. 

Every time I am in a situation where I have to interact verbally with people I can easily become stressed, flustered and find expressing myself verbally, difficult. It is worse with people I don't know well or at all. The more comfortable I am around a person, the easier it is for me to communicate verbally. I can very easily shut-down and not talk at all in social situations. When I am in a group of people I will barely speak. I am seen as shy, I am not shy though. I have trouble speaking and keeping up with the pace of group conversation. This is a form of selective mutism. If a situation is tense, stressful there is no way I am able to express myself verbally as I need to. My thoughts become jumbled. I feel frozen with anxiety. I struggle to breathe, let alone talk. It is so much easier for me to leave the tense situation and calm down. Then spend time processing my emotions, thoughts, then writing about it. It is how I have managed many times in the past when things got tense between myself and others. It did not always work out for the best, but it took the pressure off of me to perform socially and talk verbally. 

In a world where talking is the preferred form of communication, it is difficult for me to feel heard and to make myself heard. Writing can be powerful, but people have to read it and take notice of it. An email or piece of paper cannot yell to get attention on it's own. An email or letter can easily be ignored, thrown away or lost. This makes it very frustrating for me because writing is how I communicate best. I feel most at ease when I am able to put all my thoughts into written word. I control what I express, how and when. I don't have to be there to see the person's reaction, which adds to my stress in real-time verbal communication.

It takes me a lot of mental energy to form my thoughts into words and talk verbally. I get worn out easily. If I am not listened to, understood or respected when I am trying to communicate verbally, I shut-down. I feel deflated and worn out so give up trying to communicate verbally. I don't have the energy to try again.

The more overwhelmed, tired, overstimulated, stressed, upset, anxious or triggered I am, the harder it is for me to talk. It can be one, all or a combination of these which send me into shut-down.

When I am talking a lot, it is because I am either nervous in a social situation, unsure of what to say or I am trying to explain myself to someone or talking about something interest to me. Then I am focused on talking about my interest/passion to whomever is listening. I forget I am in a social situation because I am so passionate about whatever topic I am talking about. 

I am trying to talk less and take the pressure off myself to talk. To communicate through writing where possible or give myself time to think about what I really need to say, then say it once I feel more clear headed and have the energy to do so. It is difficult to do this when in conversation with someone as the other person is expecting a response within a certain time frame. I feel anxious about responding fast enough, so I say whatever I think of, which is relevant to the conversation. Later I feel frustrated that I did not say exactly what I needed to. It is difficult to articulate myself verbally in real time conversation due to how quickly the topic changes in conversation. I find it distracting from my train of thought from the previous topic which I am still trying to figure out how to say in words, to add to the conversation. Then the topic changes and I am distracted by that topic. I start thinking about what I can add relevant to the new topic and the whole process starts again. 

e.g. I will be thinking about I am going to say relevant to the current topic and translating my thoughts into words to say. The other person will say something which disrupts my translating thought process. I will process what they said, leaving my thought translating process waiting, attempt to respond with a default easy to say response relevant to the conversation. While they are talking I will continue to translating my thoughts relevant to the topic while listening as best as possible, trying to process what they are saying. If the pace of conversation is slow then I will be able to say what I need to. If the topic changes, the new topic distracts me from my current translating thought process and I will start thinking about what I have in my experience that is relevant to the new topic and the process starts again. This means I never really say what I really want to and instead use default surface communication. I feel really isolated a lot of the time due to this. It is frustrating.

I am trying to pace my talking so I don't talk reactively and just surface talk. It is very difficult for me not to talk reactively when I am trying to keep up with the pace of conversation, translate my thoughts into words, and explain myself as well as I need to, to others. 

In a group setting I do the same translating thought process as described above, but due to the amount of people, pace of conversation, numerous voices and topics which come up I end up too distracted and overstimulated to talk so I say nothing, usually. It is too difficult for me to talk, despite desperately wanting to say something and having something to say, I can't say it. Then I feel even more isolated and misunderstood. Groups are very difficult for me. Each topic that is discussed I will start thinking about the topic to figure out if I have any relevant to say, by the time I have thought of something relevant, translated it into words, the discussion has moved onto another topic and the whole process starts again. I say nothing, appearing shy, while my mind is so busy thinking and translating what I hope to say. I give up trying to talk after while as it takes too much energy to talk. I don't do group settings any more if I can help it, which has taken the pressure off me. I prefer one on one as it is less overstimulating and distracting.

Sometimes I don't talk in social interactions because I don't know what to say or ask the other person to break the ice and start interacting. I get more and more anxious as time goes on the longer I want to say something but can't. I now know this as selective mutism. I experienced this a lot as a child and teenager, particularly at school and church. My selective mutism improved as I have grown in confidence in myself. I will be writing a blog post about my experiences with selective mutism sometime in the future.

I feel out of my element when I talk, a lot of the time. I need to have scripts for talking. If I am put on the spot unprepared with a question or regarding a topic I know nothing about. I will feel anxious, stressed and awkward. I will attempt to respond but I will not respond very well. I will stutter and stumble over my words awkwardly as I try to think about what to respond with and translate that into words. I stumble through it and manage to get some words out, usually. Sometimes I shut-down and words will not come out at all, no matter how much I want them to. It is an awful feeling. I feel so embarrassed. Afterwards I will feel I failed socially and that others perceive me as unintelligent which is untrue. I have noticed that people tend not to give me a chance or opportunity to explain myself due to how I present socially or when I struggle with words. It is upsetting. I feel cut off and disconnected from people as a result. It hurts. It is difficult to connect with people due to my difficulties with talking. I want to connect with people but in a way and at a pace which suits me. Online FB groups have really helped me as to connect with like-minded people and to socialise. I prefer to socialise using written communication. I thrive in this setting. I am in the process of writing a blog post about on-line socialising. 

While talking verbally I notice my many thoughts relevant to the conversation coming up but because of the pace of the conversation I am not able to express myself as fully as I need or want to.

I find the pace of conversation difficult to keep up with, by the time I have figured out what I need to say in words and how to say it, the moment has passed, so I don't say it. Trying to keep up with the pace of verbal conversation is stressful and exhausting for me. I find processing what the other person is say, trying to think of what I need to say and keeping up with the pace of conversation very stressful. It takes a lot of mental energy for me to interact with someone I don't know well and articulate myself verbally as I need to. If I am not prepared for it, then I will not communicate as efficiently as I need to. Afterwards when I am alone and processing the social interaction I remember what I needed to say to the other person. I will feel very frustrated because I know I needed to say whatever it was but the opportunity was lost due to not being about to get my words out verbally in time. When I write to communicate my needs this does not happen because I have plenty of time to think of what I need to write before sending it to the person. I do not miss out anything I need to communicate to others when I write it down.

I have default phrases and ways I communicate verbally and can manage fairly well in most social interactions as needed. I manage to pass socially when I need to but the toll it takes on me is exhausting. I can only manage so much verbal interaction with others, than I am done for the day.
When I am nervous and anxious in social situations I tend to talk a lot more. If there is an awkward silence in a conversation I will start talking and will end up rambling about whatever I am thinking about in my on the surface thinking that is translated and easy to speak. I think it is because I am not in a situation where I can write to communicate, that and the pressure to keep up with the pace of verbal conversations is overwhelming, so I talk, usually too much. After wards I worry I shared too much, monopolised the conversation and was oblivious to the other person's body language. Now that I am older and aware of this anxiety induced talking I try to curb my need to talk by distracting myself somehow or I ask the other person questions so I don't have to talk as much.

I find it difficult to be assertive in stressful situations. In particular with a person I don't know well or am not comfortable with. I avoid confrontations and arguments, if possible. I don't have the energy for it. I have tried to be assertive in the past, ended up not being heard or taken seriously, triggered and in shut-down. I realise I do not have the energy to engage with a person, I only have enough energy to be assertive once, then what? I don't know how the other person will react, it's an unknown and I am unprepared. I don't want to end up selectively mute and paralysed to the spot due to trying to stand up for myself once, then not knowing how to respond to the person's response and behaviour. It is not worth wasting my time and energy only to end up triggered and in shut-down. People shouting at me and acting aggressively is a trigger for me, due to how I was treated by my Dad. I prefer to use written communication for confrontational and tense situations, it is so much easier for me to communicate this way and more effective too. 

I talk a lot when I am at home, I have come to realise that it is more for me to process my thoughts, feelings and ideas verbally. Atrus gets tired of me talking, repeating myself over and over about whatever it is I am processing and perseverating about. I have noticed this happens when I am not able to have time to sit down and write about whatever is bothering me. When I have time to write and express what I need to, I talk a lot less. Talking about whatever is bothering me is usually not enough for me to feel better about it. Atrus and I have since both agreed to use written communication more in our relationship. Once I have written about whatever is bothering me, I feel I have been relieved of whatever was building up inside me and I have space in my brain to think of other things that need dealing with. I need regular time to write to manage my emotions, thoughts and life. It makes a lot of sense actually, as I kept a diary from age 14 to 21, which really helped me cope the turbulent teenage years. I often had no one to talk to, so I wrote in my diary and always felt so much better after writing about whatever was going on for me. I felt renewed after writing. I wrote a lot of poems in my childhood and teenage years. I loved playing with words, creating interesting word pictures and expressing myself through short, succinct poetry. I liked to control how many words I used to express myself in a creative, unusual and succinct way. I was in my head a lot as a child and teenager. I still am, when I can. Being married and a parent, means I have to talk more, be present more and not always thinking, thinking, thinking, and processing, then creating, writing and expressing.

Writing is how I process my life experiences and emotions. It grounds me. I am able to let go of things easier, heal and move forward once I write about painful experiences.

Once I have written down and fully processed whatever experience I am writing about I am able to verbally talk about it much easier. My writing becomes a script for being able to express and explain myself. If I don't write about my experiences, particularly painful experiences, they float around in my head as pictures and concepts, I am not able to talk about whatever it is in verbal words. Sometimes too many painful and stressful events happen close together. I will shutdown for months afterwards. Locked in myself and unable to get the words out. I'll be able to do surface, default scripting for verbal talking, enough to get by and pass socially (just) but I will not be able to talk about what is really going on in the depth of my thoughts. It is really isolating. I will feel blocked up, stuck in that period of time until I finally have the energy to translate all my thoughts into written word. Then I can talk about it verbally, at length, if I need to.

Since becoming a parent I don't get the time I need to process my life through writing. This means stresses, emotions, anxiety build up quickly and overwhelm me. It is exhausting living my life with a head full of unprocessed & untranslated thoughts with no time to process and purge them through writing. I try to schedule in time to write when I need to.

There are no words for how much I love expressing myself through writing. It is relieving, calming and it makes me happy. When I talk I feel like I am talking from the surface of my thoughts, that my verbal words are the tip of my thought ice-berg. There are layers of thoughts in my mind and I long to express them in conversation. I often don't say what I really need to or want to because the words have not yet formed in my thoughts. The concepts, the ideas are there in my mind. I know exactly what I need to say, but it is not translated into words I can communicate to others in words they understand. It takes me time to process these thoughts into words, into a language which is different to that of my thoughts. Talking is a frustrating form of communication because I often cannot say all that I need to in verbal language, particularly in conversation.

I write to-do lists to remind myself of what I need to do for the day, week, month. Everything is visual and written down. I write a daily to-do list each night before I go to bed. Which means I don't have to think when I wake up. I wake up, refer to my list and start the day. I love ticking things off my list. It is a good feeling. I have a parking book where I write lists each week of things I need to do when I am able to so I don't forget. I tick those off when I have completed them. I don't give myself deadlines for those items to get done. My parking book is a place for me to write all the numerous things to-do filling up my head that I worry I will forget. If I don't write these things to-do that are filling up my head, down. I get more stressed because I am worried I will forget them and then I have less space in my brain to deal with real time unexpected events. Once I write these things to-do in my book, I have more space in my brain to focus on what needs doing in the present. I have three monthly calendars, one in the kitchen, one next to the phone and one in my room where I write my up-coming events in them. That way I can see how busy each week is going to be in the three places I am most likely to see them and I can post-pone appointments if I need to or not schedule anything else for that week if I already have enough planned. It makes planning so much easier. I used to muddle through my days, weeks and months appointments with no idea how busy my week looked overall. I had daily reminders set up on my phone so I knew what was happening that day. I had many times where I had too many things planned for the week or month because I could not imagine how busy it really was. Having monthly calenders to refer to visually has really helped prevent this as I can see a week or month in advance. 

Writing is my life force. It is my breath. When I don't write I feel I am living my life holding my breath, thoughts and pressure build up in my brain and body. Without time spent writing I would be lost and struggling to communicate as I need to. Talking is over-rated anyway.


A poem from my teenage years written when I was about 16-17.

Escaped Words

In my head
Is not lead
But sentences and words
Always trying to escape
From the depths
Of my soul

Up they come
Out they rush
A lot here
A little there
Finally making sense

Read aloud
They’re like
Little cloudbursts
In the rain
I always gain
The confidence
I need to
Write again

K. R., 2000


Relevant Blog posts from other autistic adults

Autistic Speaking

The one where I talk about why talking is hard

Echolia and scripting: straddling the border of functional language

Non-Speaking (at Times) Autistic Provides Insight Into Communication Differences, Part I
Non-speaking (at times) Autistic provides insight into communication differences, part II

The Kitchen and my executive function issues

I really dislike cleaning the kitchen. It is the bane of my existence. I find it exhausting, mindless, mundane and never-ending! Atrus and I are always trying to figure out ways to become more efficient in cleaning the kitchen to minimise how much time we have to spend cleaning. I dislike having to do big blocks of cleaning in the kitchen because that cuts into time I could be doing other far more interesting and intellectually stimulating things. Atrus and I usually clean the kitchen together, we have a morning and evening routine that we try to follow to minimise the mess building up and becoming a really big mess. We are all about prevention and efficiency. The past few days Atrus has been unwell in bed, so I have had to do everything in the kitchen myself. We let the mess go for a couple of days prior and it was my son Possum's birthday party prior to this. This meant there was extra mess in the kitchen than normal. I did not have a good day on the Monday as I was feeling really worn out after the party and emotionally awful. I needed to have a rest day of doing nothing. Cleaning the kitchen was too overwhelming to face. Yesterday (Tuesday) I finally faced the mess on my own whilst Atrus rested in bed. I found it exhausting to do it all. It took me over 2 hours to clean the worst of it, by which time I was worn out. I had a rest after this.  Last night and this morning I had more cleaning to do to prevent the mess from escalating. I calculated I spent roughly 4 hours cleaning the kitchen over the past two days, which I think is ridiculous and frustrating!

I had a little crying vent to Atrus over how much I dislike cleaning the kitchen. Atrus listened patiently while I cried about how long it had taken and how frustrating it was. I googled 'cleaning the kitchen efficiently' on my phone while he was listening to me vent. I scrolled through the list of links, most of them weren't what I was looking for. Towards the end of the list, there was a link called '10 ways to clean your kitchen less often and enjoy it far more.' I told Atrus about the article I had found and started reading it. The first thing on the list is, I kid you not, '1. Start with an empty dishwasher and an empty sink.' I burst out laughing because the above statement is the very thing I struggle to keep on top of most, let alone do anything beyond that, besides cooking. The article had some helpful tips, but it was mostly stuff I already know and try very hard to do, but find very difficult, overwhelming, tiring to maintain, which is really frustrating and upsetting. I did feel better after having a laugh about the first statement in the article, realising that the way I clean and do things is very different to what most articles suggest to do. 

I have read a few simplifying housework articles over time which have ideas of how to clean your house in one hour or four daily routines, for example, to keep cleaning simple. I find them overwhelming and stressful as the amount of work they suggest to do is phenomenal. I do not have that kind of energy to do ALL that they suggest, plus actually live my life! I am working on working out cleaning routines which work for us, in particular a cleaning routine for the kitchen as it gets the messiest very quickly.

I hate clutter on the kitchen bench, really hate it. Clutter on the bench makes it so difficult for me to face cleaning up and cooking. I feel overwhelmed and overstimulated when I come see the kitchen so cluttered. I have been researching ways to clear the clutter off the kitchen bench into other areas so that it doesn't build up and take over the kitchen bench. It is a constant battle to mimise the clutter on the bench. I have shared a couple of articles below with some ideas of what I am planning to try to get rid of most of the kitchen bench clutter. I am very visual so have realised that I need to have certain things on the bench for me to see otherwise I will completely forget about whatever it is and not take it or use it. I am in the process of researching and working out a visual system to refer to help me with this, so that I make use of the things I need to in the kitchen and don't forget important to use or take items (such as my vitamins/medication).

I have this ideal in my head of how the kitchen will be but never ever reach it. I have stopped trying to reach that ideal because it is unrealistic. I stress myself out too much trying to reach it otherwise. I don't think it is too much to ask to have the dishwasher unloaded/dishes washed up, and kitchen bench clear though. That is my aim, to wake up to every morning and have done every night before bed, so the mess doesn't build up to two, three days or more of mess. If the kitchen gets to three or more days of mess then the mess is very overwhelming, gross and hours of work. Which I dislike! I do not like spending hours of my time and energy cleaning the kitchen, when I can be doing other things. If the kitchen gets really bad, then I end up avoiding cleaning and cooking because it is too overwhelming to look at. Atrus cleans it up, like a reset, only then am I able to face the kitchen and cooking again. I feel bad about not cooking or cleaning when it gets this bad. Whenever I look at the mess my brain cannot differentiate the mess and I find it difficult to figure out how to break the mess down into doable clean up steps. The kitchen will have gotten to this point because I am worn out and have likely over-done it, so need to rest. When I come to face the kitchen mess in this worn out state, I don't have the spoons or EF to clean it up. Then cook on top of all the cleaning I have had to do to get the kitchen back to manageable and able to cook level. This is what I find most frustrating. Once the kitchen gets out of control, which only takes a day or two, then I likely won't cook most of that week. I am trying really hard to manage my energy and have systems/routines in place to prevent the mess from escalating, most of the time it works well. Sometimes it doesn't, it is those times that I find difficult to navigate.

I find it really difficult to get the work of the kitchen done quickly, what might take others (on average) 20 minutes, probably takes me twice that. Add in interruptions from my son Possum and it takes a lot longer to get it all done. Every time I am interrupted by something, I have to spend time figuring out what I was doing and allow myself to slowly get back into whatever I was doing. If I have multiple interruptions all together, I end up needing to take a break to collect my thoughts and figure out what I was doing originally. All this takes time and means the time taken to clean the kitchen takes longer and longer. Very frustrating indeed. Most days the kitchen is not fully cleaned until after 11am. By then most of the morning is gone and I can't go anywhere till after lunch as my blood sugar will be too low to go anywhere by then (I walk everywhere as I don't drive).  I find it difficult to let the mess go and get on with other things that need doing sometimes too. I hate coming back home after a tiring day out to a mess in the kitchen. I know I will not have the energy to clean it up when I get home. I always try to make sure the worst of the mess is dealt with before we leave the house, which means we are often late leaving the house because of my need to not have a mess to deal with at the end of a busy, tiring day.

I like cooking. That is the part about the kitchen that I do like. Cooking is a creative outlet for me. I enjoy cooking nutritious food for my family eat. I like having delicious food to look forward to and eat.  It is impossible for me to cook in a messy kitchen. I am not able to concentrate, or figure out what I need to do in order to cook. Ensuring I have a clear bench, dishwasher unloaded and dishes washed up is of utmost importance in order for me to cook. If the kitchen isn't clean then I don't cook, which means no one eats healthy food, we just buy takeaway, packaged food or whatever is readily available. This bothers me and frustrates me. I have to work extra hard to make sure that the kitchen does not end up in a vicious cycle of built up never-ending mess, so that my family can eat healthy.

Further reading:

Kitchen declutter ideas

Water bottle and storage organisation ideas

Organising the kitchen bench clutter

8 small cooking habits that make a big difference


Related blog posts by Autistic bloggers

Procrastination or executive function fail

A healthy mind in a tidy house

Executive function fail with pictures

Creating as sense of order

Emergency cleaning

Life Happens

Meltdown support

I found a list I wrote for Atrus last year explaining what I needed him to do in order to support me through a meltdown or when I was feeling anxious, and stressed.

1. Please do not question or argue with me. Just listen. I need time to process.
2. I will write requests for things I need done that are causing me anxiety/stress rather than speak them as it is easier for me write at this point. Please read them and do them, if possible.
3. Explain to me what you plan to do next so I know and don't feel out of control. I literally feel like my world is spinning out of control when I am in this state. I need things to be as predictable as possible.
4. I do not need you to argue with me and justify yourself. I need things to go smoothly so I don't feel out of control.
5. Please listen to me and take me seriously. This is a scary time for me. I need lots of reassurance. I need you to be caring and empathetic with me while I am in this state.