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.

Last year: Burnout

I have been thinking more about what was going on in my head last year and how I was in shut-down almost all of the time. I refer to this post here.

I remember reading about things others were sharing about their daily lives on Facebook or hear others plans in day to day conversation. I would feel anxious and overwhelmed just reading about it or hearing about it. I would then start comparing my life to theirs without even realizing. Then I would end up feeling useless and like a failure at living and managing my life.

My thought process was 'I don't even know how to do that (whatever it was). I don't know how to do anything more than what I'm currently,' doing which wasn't much. I felt like a failure as a result. I didn't even try after awhile as it was too upsetting and depressing.

My brain felt like it was in a fog of overwhelm almost constantly. I couldn't think clearly or figure out how to do things, even simple things. I'd look at 'how-to's' and think 'huh? How? I don't know how to do that. I don't know how to figure out how to do that and the steps involved to get there.' My executive function was terribly impaired.

I was hyper sensitive to everything and perceived everything to be either a threat or judgement. I had trouble with letting things go, over thinking or perseverating on whatever it was.

Due to the fact that I was already very overwhelmed by trying to manage the bare minimum of daily life when anything unexpected came up it rendered me inert, anxious, stressed and struggling to figure out to deal with it. My EF issues made it really difficult.

For example when we found that out that my son had nits I instantly felt exhausted by the fact that I knew I had to sort it out somehow and that it meant I needed to change my routine (only thing keeping me somewhat stable and able to keep going) and go out of my comfort zone, to get the things we needed to deal with it. I just wanted it to go away on it's own so I could go back to resting and not dealing with anything outside of my very small comfort zone. Change is hard for me when I'm at my best. It's almost impossible when I'm at my worst which was the case for most of last year. Somehow I managed to gather energy and adjust to the change and we dealt with it. I would not have been able to manage without my husband who ended up doing most of it. He bought the nit shampoo as I was not up to leaving the comfort and safety of my home. He bathed and shampooed my son. We did each other's hair. I did all the washing and changing of bedding and towels. That was what stressed me out the most, the fact that we had to change bedding mid-week which is not my normal routine. I did not know if I had the energy to run around changing all the bedding and washing it. I managed though, somehow. I usually do washing of bedding and towels on weekends when I feel more rested and Atrus is home to help out with things. It takes the pressure off and the change in pace from the busyness of the week helps.

The above is one example of how difficult any change and anything outside of my comfort zone was to deal with. I felt the same way each time something new and unexpected happened. The same process happened each time.

All I wanted to do was be left alone so I could rest and recover in peace. I viewed anything outside my comfort zone or anything unexpected that came up as invasive and unwelcome. I did not have the energy or brain space to deal with it. Even doing the bare minimum was very overwhelming for me and required a lot of energy for me to think about doing and then actually do. Which is called inertia.

Daily living was challenging enough. I barely cooked last year because of EF issues and not enough brain space to process how to do it. I remember looking at recipes and feeling overwhelmed. I couldn't figure out how to do all the little steps and often did not have the energy to do it. Cleaning was in the too hard basket most of the time. Thankfully I have a cleaner through respite who does the basics which really helped keep the mess from getting out of control. Atrus helped out a lot with cooking and cleaning too. I do not know what I would have done without either of them.

Another example I can think of regarding my executive function is a packet of glitter stars which I found in the bathroom cupboard tucked away at the back just recently. The packet was open and spilling glitter stars everywhere. I remember making a calm down glitter bottle more than a year ago for my son and I. I had no idea what to do with the glitter packets and how to stop the glitter going everywhere so I just left it at the back of the cupboard and forgot about it. It brought back memories of how bad things were for me and how incapable I was of doing the simplest of things. Now that I'm in a better frame I can easily figure out how to deal with it. I put it in a mini resealable bag and its sorted.

There are many painful reminders around the house of a similar nature where I have not known how to deal with it and just left it. I'm coping better so I'm starting to organise the chaos and set up systems to minimize chaos and clutter. It's going to take time because I've been in shut down for a number of years and everything has really gotten out of control. Step by step I will work on the clutter and organise it better.

I have been in this overwhelmed shut-down since my son was born, nearly 4 years ago.

I found (and still find) Facebook incredibly overwhelming and stressful a lot of the time. I tried to manage my usage and limit what I used it for. I didn't want to give it up completely as I would have had no contact with any of my online friends and even less support. I would have been even more isolated.

When I vented about how much I was struggling on my own profile, it ended up being even more overwhelming and stressful a lot of the time. Others would suggest things to try as a way of fixing whatever the issue was. That was unhelpful and unsupportive for me at the time. I understood that they were trying to help. It was not what I needed. It added to my level of overwhelm and anxiety. I was at a point of frustration at not being able to do whatever it was and was trying to explain why it was so hard. Most people didn't get it. What I needed to hear was 'I hear you. I'm sorry it's so hard. Sounds like you need a break and to do self-care.'

No one said that to me though. I did not have the brain space to process what else to do to help me rest and find my calm. I ended up stuck in this state, unable to figure out what to do. It was a vicious cycle of not wanting to feel completely isolated, reaching out on Facebook and sharing my struggles only to be even more overwhelmed by ALL the 'too much for me to process suggestions.' I ended up using up more energy trying to explain myself over and over to people who I didn't owe an explanation which further wore me out. I did not have the brain space to think to myself 'venting on Facebook isn't helping me for these reasons, perhaps it's better if I did xyz instead.' I did not know how to listen to my inner voice and work out how to do what was best for me. I was not in the frame of mind to think to do that. I did not have a therapist or someone with more life experience to advise me on how to cope and to help me get out of that stuck state by giving me small non-overwhelming steps for how to get out of that stuck state. I likely wouldn't have thought to say anything if I did have a counselor because I was too overwhelmed and in shut down to realise that venting on Facebook wasn't helping me.

Thinking back to that time it is clear to me that I had regressed a lot. I simply could not process anymore information. I had experienced too much stress and trauma the previous 3 years and was at my limit. It has taken several months of letting go of everything and resting to get to the place where I'm at now.

Towards the end of last year things slowly started improving for me. I started seeing a fantastic counselor, I got more respite support,  and I had a 9 day break at home from the rush of the normal routine (my husband and son went away to visit my in-laws for 10 days). The change in pace and time to rest, let go and not have to worry about keeping up with the day to day, really helped me to recover to a place where I felt a lot less overwhelmed. 

My husband had 3 weeks off over the end of the year which was also instrumental in my recovery. The change in pace, having him home full time and being able to do things at a pace which suited us hugely helped me to not feel so much pressure to keep up with everything and to rest. 

It has been a gradual improvement, over time.

Things have improved a lot for me recently. I can think of several reasons why. More support, therapy, validation, listening to my inner voice, managing my energy extremely carefully, taking medication and vitamin supplements, eating healthy as best I can manage, letting go of what is not important and draining of my energy, managing my thoughts, change in mindset, lots of rest,  relaxation, exercise and self-care.  I have started little doable creative projects to use to inspire myself when I'm feeling triggered, anxious or feeling my moods get out of control.

I'm learning to have fun again and really enjoy life. Something I almost forgot how to do for a long time. 

I am determined not to let myself end up in such a dark, hopeless place again. I have made it my top priority to manage my energy and rest when I feel myself getting worn out. I am working on pacing myself better and not taking on anymore than I can manage.

Further reading:

Help! I seem to be getting more autistic.

Autistic burnout by Judy Endow.

Energy, comfort zones and friendships

The importance of boundaries, managing my energy and pacing myself.

Managing my energy is of utmost importance for me. If I do too much, push myself, when something unexpected happens, that will send me into overwhelm and exhaustion. When that happens I find it much harder to manage everything in my life and struggle to mentally let things go so I can rest. I then feel stuck in anxious/stressed limbo about all the things that need doing that are building up (dishes, washing, cooking, etc) and find it difficult to rest to recover. This can very quickly become a vicious cycle in which I am almost always very overwhelmed and in shut down so am not able to think clearly or manage to keep on top of basic responsibilities. If one thing in my life gets out of balance then it's like a tidal wave of overwhelm is unleashed and I find it incredibly difficult to feel rested and able to get on top of everything again. 

I am aiming to work very hard to manage my energy this year and pace myself. I need to.

I am in the process of setting up a coping folder with prompts for when the overwhelm tidal wave hits to help me lessen the impact. I am aiming to have systems set up and organised so that when the overwhelm hits I am able to use my systems to help me get through it. I can do this. I have a much better support system this year and am in a better place mentally and emotionally. It is a work in progress. I am doing this with my disability support worker.

Extra activities and appointments outside of my comfort zone

I only have so much energy most of which goes on managing daily life and family responsibilities and appointments. Trying to fit in building friendships and building connections is very overwhelming, exhausting and stressful for me. I often don't have energy for it or I get caught up doing things to keep up with the day to day and forget. By the time I remember to try and fit in friendships I'm far too exhausted to get words out and articulate what I want to say or write so I don't bother. It's too much a lot of the time. I find navigating social situations very stressful and exhausting. I tend not to bother as I simply do not have the energy for it nor do I want to waste my energy worrying about it. I don't have the energy, in particular emotional energy to worry about if I'm saying/doing the right thing, or if I've offended someone and not realised (I tend to be fairly oblivious in social situations as I'm too overwhelmed and anxious just trying to keep my head above water socially to even notice or think about if anyone is offended) or if I've said too much or too little or asked any questions or whatever else. It takes a lot of emotional and mental energy for me to be social and to be in a place mentally and emotionally to be able to make friends. So I tend to avoid it as I have limited energy which goes to managing my issues, parenting, appointments, household, organization and cooking. Each of those tasks in and of themselves take a lot of energy and I am rarely if ever performing at my peak for each of them.

I have been going to choir for a couple of weeks this year and I went a couple of weeks last year. It was good for awhile but now it is taking it's toll on me.
I am considering quitting choir as it is taking a lot of energy to get myself organised and get there on time and prepare myself and a meal before 6pm. I have found that by that time of the day I fade quickly and have no capacity to engage in conversation to interact with others, let alone navigate all the social crap (as described above) as I'm too worn out and my brain is at a low level of function by then. I just go to choir, sing and try to figure out what my notes are and listen to others in my part sing so I can get my note (definitely do not have energy to fit in practicing at home) and then try very hard to keep my eyes open and my brain at some level of function so I can just process the notes and singing. Then I pay and go home. I don't chat to anyone or anything because I'm so exhausted and just want to get home and wind down then sleep.

I need to take my son to the dentist for the first time. He's nearly 4. I'm so anxious about it for a number of reasons. 

1. I know he will not cope with someone poking around in his mouth. He finds us brushing his teeth hard enough and will only tolerate it for so long. My own anxiety about him not co-operating and feeling out of control adds to his anxiety. 

2. I don't drive so the added stress of organizing transport and trying to fit in with someone else's times to get there, adds to my executive function and anxiety about organising it.

3. I have health anxiety so hearing what the dentist has to say (it's an unknown which makes me feel unsettled and anxious) is one more thing which overwhelms me. I have put taking my son to the dentist in the too hard basket for awhile because I have had a lot of other stress and trauma going on. 

Avoiding it but knowing it needs to be done adds to my anxiety. I am worried how I will manage my son's possible meltdown at the dentist on top of my already high anxiety about organizing it and going. I need to find an ASD friendly dentist if there is such a thing. I doubt there will be one within walking distance for me which adds to my stress. I don't know how to face it. I am working on a plan for how to approach it with my disability support worker, which has really helped take the stress out of it.

This is my thought process for most big things that I know need to be done outside of my comfort zone, I end up frozen with anxiety about it and unsure how to move forward.

The other reason I have not been able to face anything outside of my comfort zone is because I have come to realise that I only have enough energy to manage the day to day, even then I find it very overwhelming and tiring. Anything beyond that, such as appointments and whatever else needs doing outside of day to day living takes a lot of energy, more than I have, so I tend to avoid. If something comes up unexpectedly, and needs doing, that makes it harder to face and re-adjust my plans. Coping with change is difficult for me. I know if I pushed myself to go when I wasn't fully prepared and feeling like I had enough energy to do it then I would end up feeling very burnt out and would take who knows how long to recover. The thought of that scares me, having experienced a breakdown. I don't want to end up there again. I work very hard to manage my energy and manage the day to day.

So here I am able to function fairly well just with the day to day but add anything else which is not part of my normal routine and suddenly I am not able to manage so I avoid it and just focus on what I can do, not what I am not able to. Even though I know some of it needs doing which upsets me as I don't know how to fit it in and have energy for it and figure out how to approach it and have energy to do that. It's all very argggghh!

Friendships.

I find people very confusing and unpredictable which is stressful for me. I don't have energy for their unpredictable, confusing ways, their assumptions, their unsaid expectations and the unsaid social rules. It's too much. My brain can't process it or make sense of it so it basically I have a brain fart and don't worry about dealing with people if I can help it. It's all a big confusing mess which I would rather not stress or worry about. I have had too many painful and upsetting experiences with friendships not working out to feel safe enough to open up to many people.

Having written all that I do like socializing and connecting with people but on my terms and when I have the energy for it which isn't often and they have to accept me as I am and make an effort to understand me or it won't work out because I do not have the energy to deal with manipulative, passive aggressive, petty, judgmental and toxic people. Finding friends who are not like that is a challenge as I have to go through crappy people to find them and I am finding I do not have the energy to deal with being hurt by people. I need friends who accept me and understand me and don’t expect more than I can give. Not being able to drive and get to places adds to my stress about friendships because it is isolating and makes it harder to connect with others.

I am realising I do not have the energy to worry about if I am doing the right friend things and chatting enough, catching up enough, etc. It is really stressful, upsetting, confusing and draining. I will contact people and connect with people when I can and they are free to connect with me when they can. 



I am working on living my life in a way and at a pace which suits me. I am working on letting go of things I know I do not have energy for and learning how to manage and make plans for things that I know I do need to do.

I found these two blog posts really helpful to how I need to live my life in order to cope.

Learning to exhale by Briannon Lee.

In a bubble by Amy Bean

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.