Tuesday, 18 October 2016

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.

Time blindness

I recently discovered a new term: time blindness. It perfectly describes my struggles with time management. My husband Atrus has similar struggles with time management too, we do compliment each other somewhat so it balances out a little.

I have time blindness. I lose track of time so easily. The pressure of adhering and following time causes me a lot of stress and anxiety. I really would prefer to live my life free of clocks, time and do things at my pace and when I can.

I have worked hard to figure out ways to cope with time blindness and am getting better at being on time. I realise I need a lot of time where I don't have anything scheduled or planned so I can cope with the times there is a lot more pressure on me. My anxiety is too severe and I get too worn out by having to constantly cope with outside pressures on me. I need uninterrupted down time to lose track of time as a rest period. I cope a lot better with time management when I have these times regularly.
I hugely struggle with time management. I have severe anxiety, asd, ADHD, depression and PTSD. I have always struggled to be on time, all my life. I have a love/hate relationship with time as it makes no sense to me to live by man made time rules. I find time confusing and stressful. I have no context of time when I don't have a clock or watch with me. I can't estimate how long things take. I do not wear a watch because having the time with me all the time causes me huge anxiety and I feel far too much pressure (too much pressure and performance anxiety means I fall apart with anxiety and crying if there is too much then nothing gets done and I have no more energy to get myself to whatever I'm trying to get to).

When I'm in the zone of getting ready, time ceases to exist as I'm so focused on getting ready and can get so easily distracted by things that need doing and I get obsessive about getting everything done before I leave the house. I hate leaving the kitchen in a mess (I'm getting better at letting the mess go and prioritizing being there on time). I have recently changed all our clocks to 10-15 min fast and then aim to leave 10-15 min before the time I need to be there on the 15 min fast clock which really means 30 mins earlier and I am finally having success in being on time to things. I have reminders on my phone for everything too, which helps. It's taken me till this year to mostly be on time. I don't work due to disability so that isn't an issue for me but I have been late to appointments or missed public transport because I under-estimated how long it would take me to get ready and how long it would take me to walk to wherever I need to (I don't drive due to anxiety). I'd arrive late, in tears and have a major anxiety attack in public (horrible and embarrassing experiences). I majorly struggle with executive function (dysfunction in my case) which is planning, organisation and making things happen. I am slowly improving with time management and being on time. It's important to me and I always feel like such a failure in life and a crappy person every time I'm late. I tend to beat myself up about it a lot and get depressed and anxious about it. But I'm trying so hard to find ways of being on time that work for me and being heaps kinder to myself about it when I am late (the lateness is happening a lot less). I'm learning.

I'm over 30 and a parent so it's been a life long learning curve for me to manage my time better.

Further reading:

On-line socialising

I have been musing about online socialising for quite awhile now. Mainstream society would have me not socialise online, they would have me out socialising in real life and getting worn out. I enjoy socialising in person with others but in small manageable doses. I need to manage my spoons/energy and keep my life in balance. I can only manage so much real-life socialising before I lose my balance in life.

Online socialising and women's Autism groups have really, really helped me grow as a person. I have learnt so much about myself and it has been a relief to know I am not the only one with similar struggles. Socialising in these groups has helped me to become more open-minded, understanding and empathetic of others' journeys. It has helped me to accept and embrace the diversity of the world, because even within the Autism community there is diversity because we ALL come from different backgrounds and upbringings. It is our unique neurology which binds us together, we are diverse in all other ways.

Prior to getting involved in autistic groups I was quite close-minded, rigid and immature. I was judgemental of others and why they did the things they did. I did not know how to treat others who were different to me. I have since learnt a lot about myself, others and how to treat others since socialising online. I now make an effort to try and understand why others do what they do and their journey of what led them to this point. I try so hard to be empathetic and understanding of others now and not judge. I still do judge, I am still close-minded at times, I still stereotype but I am far more aware of it in myself than I ever was. I question myself and learn from my mistakes. It was the online social interaction in ASD women's groups which really helped me to learn this. I learnt what to say or write by reading what others wrote in response to others experiencing tough times. I learnt other socially appropriate things to say and write too. Socialising online is a way of me scripting social situations so I am able to learn how to interact with others. I learnt how to treat people with respect and be caring, empathetic way. At the same time I was forming amazing friendships with other Autistic women.

I would never have been able to cope with meeting so many people from all over the world in real life. I would have been too overwhelmed, anxious and overstimulated. I would not have been able to hold a conversation. Online socialising is the way to go for me.

I remember when I first joined up to an Autistic women's group. I remember the hesitancy I felt about joining. I was so focused on the stigma, the stereotype about Autism that I was afraid of the journey. I remember spending months being unsure I was even Autistic. It was a difficult time but once I accepted my neurology I felt so much peace within. I got more involved in groups. It was amazing to realise there so many other women experienced similar struggles, joys, and understanding of the world.

I have so much more self-awareness now as a result and which will continue to grow.

I thank all the amazing people who I have socialised with online over the past few years. You have taught me so much more than I would ever learn socialising in person.

I thank them for their friendship, understanding and acceptance of my own journey

E - “I also feel that facebook has helped me to become less judgmental by exposing me to many different kinds of people from all over the world. It has also given me the opportunity to learn and practice social skills that I've never had the chance to practice in 'real life'. Some of those skills are now transferring into 'real life'. Being a co-admin of a small group has been the kind of experience I would never have had in real life.”

When I went to a self-care workshop recently. They were talking about how unhealthy it is to isolate yourself (I agree, to a point) and be stuck in a rut for ages. They were talking about how important it is to get out and socialise. It is important but I am not going to have energy (spoons) to socialise when I am depressed or really anxious. I have just come out of a major depressive episode and I could not easily connect with others, no matter how much I tried. Even online socialising was difficult for me. It was too hard to think of what to write or share in groups. I withdrew to heal. I would not have coped with forcing myself to socialise when I could barely get words out in written communication. I am tired of people telling me socialising online is bad. It is not. It has been the best thing for me and for many others I know online.

The self-care workshop was really good, helpful and informative but very NT and not very Autism friendly. There was a big emphasis on socialising and connecting with others to stop oneself from sinking into depression. When I get depressed I regress and can barely verbalise myself. Socialising is the last thing I want to do. I take other solo self-care steps to improve my mental health, such as exercise, reading, watching funny movies and spending time with my family.

I have experienced a few negative interactions online since I have gotten involved in the Autistic community, which is unfortunate but bound to happen. They were quite traumatic for me. I would perseverate on why it happened, what went wrong and how I could fix it. I was so hurt and confused. I spent hours crying over these bad experiences. The pain was intense. I did not get involved, I withdrew to protect myself. I ultimately wish everyone could get along but I have come to realise this will never happen. I will clash with some people, some won’t like me, this is just how it is. The negative experiences I've had have helped me to grow and become stronger in myself. It's helped me to understand boundaries and not be afraid to set them. It's helped me to stop worrying about offending others and doing what is best for me and my emotional health.

Online socialising has helped me to learn to take a step back from a situation and not take it personally. I try to evaluate what the other person might be going through, where they are coming from and try to have empathy for where they are coming from. By doing this I endeavour not to judge the person and their journey. If I am emotionally too close to the situation it is more difficult for me to take a step back and evaluate it rationally.

I don't usually take other peoples' behaviour personally either. I see it as a reflection on them and where they are at in their journey of life.

I remember writing an essay for University about on-line gaming and education. It was quite fascinating.

It completely changed my opinion about computer games. I believe this helped pave the way for my openness about on-line socialising. When I interact with others in person I try to use my social skills I have learnt through on-line socialising.

I have noticed there appears to be a stigma attached to on-line socialising. When I have told people about my experiences online (good and bad), they are quick to judge and tell me it’s not real, not to get so involved, to focus on reality. What they don’t realise is for the first time in my life, I feel I belong. I have found my people, my culture. While we may not all get on, there is still an overwhelming sense of belonging and acceptance.

These people do not realise for the for the first time I am able to learn social scripts in real time and at a pace which suits me.

As my one of my on-line friends M puts it so eloquently, ‘I like the solitude of body and communication of mind, so mostly social media is easy to use. If I need to, I can take a break and that’s okay.’

When I talk to others about my experiences on-line, I am often silenced, undermined and told it’s not real life. I have found this incredibly hurtful and insulting. I feel I am part of a different culture more so than ever when this happens. I try not to let it bother me anymore. I have found my version of normal and what works for me. It can be exhausting finding my own path, but it is very rewarding.

Quote from my essay (which I wrote for Uni in 2009).

A study was done on the game World of Warcraft, a massively multiplayer online role-

playing game (MMORPG), and the online community that supported and educated players in the playing of the game. The study showed that there are advantages to playing computer games, particularly online games where players from all over the world connect to play. Players form guilds with which they socialise, play, learn and support each other. The study found that the way players learned how to navigate the game could be used to improve student learning in the classroom (Nardie, Ly & Harris, 2007). In World of Warcraft players create a character with which to play, through this character players then “explore, fight, socialise, make money, take up professions, and advance through 60 levels of play. Playing the game is complicated, players need to develop strategy, find out numerous game facts and develop their character
through various ways. “Despite this, the manual that comes with the game is a slim 4x5 inch volume. No teacher, coaches or curriculum explain the game. None of the familiar supports of formal education are in evidence – but no one fails World of Warcraft” (Nardi, Ly & Harris, 2007).

Overall the advantages of computer games is they provide an alternate way of educating students, rather than using traditional methods. Games also can provide ideas for new ways of teaching. Some of the tag lines that games use are; “Create your own heroes, Engage… Challenging… Perform… lead… Don’t work alone” (Prensky, 2005). The games deliver these promises to players. This is not exactly a description of today’s classrooms.

Prensky believes what is lacking in education today is engagement in learning; computer games offer this. Students still have to go to school whether or not it is engaging and that is enraging them to push their teachers to do better by them (Prensky, 2005). “…Game cultures promote various types of information literacy, develop information seeking habits and production practices (like writing), and require good old fashioned research skills,” (Squire, 2005).

Whilst the quotes focus on on-line gaming in education. These quotes echo a similar dynamic which is portrayed through my experiences with on-line socialising.


Prensky, M. (2002). The Motivation of Gameplay. On the Horizion, 10(1),

Nardi, B., Ly, S., & Harris, J. (2007). Learning conversations in World of Warcraft. University of California, Irvine: Author.

Squire, K & Steinkuehler, C. (2005). Meet the Gamers. Library Journal, 130, (7), 38-41.