Fear of living

For a long time I have had a fear of living my life. I have always had a lot of fears since I can remember as a very young child. These have changed as I got older. 

I experienced this feeling that I didn't deserve to have a happy, fulfilling life, I believed it was for everyone else. I don't know where I got this idea from. I have felt this way for most of my life, it got worse as I got older and noticed that most other people were very driven and all about appearing successful in life. I thought I had to do xyz before I could really live and be happy. I kept trying to be what I thought was successful, kept pushing myself, would get overwhelmed and worn out. I would beat myself up for not being able to manage as well as others seemed to. I withdrew a lot after I was married for a few reasons regarding how I was treated by some family members. I had my degree as was expected of me, I was married as was expected of me, then I thought now what? I didn't know how to live or what to do with myself. I had this feeling that I didn't deserve to really live or be happy so I hid myself away from the world because it was so overwhelming and difficult to navigate. I did not understand myself, I was not diagnosed, I had little self-awareness or understanding of myself. I felt isolated and disconnected. I had friends but it didn't seem real and I didn't believe they really liked me or that I had much to offer in friendships. I had very low confidence, self-esteem, hated myself, thought I was not intelligent and thought I was a failure at life. I knew I was different to most other people due to my difficulties but did not know why. I turned this onto myself. I believed I was defective. Nothing felt real, for a long time. I was very depressed and anxious. It was a horrible place to be.

My diagnosis was a relief and changed how I viewed myself. 

Due to all of this working against me until recently, I have not felt I have really enjoyed living or allowed myself to live and be happy until recently. I look back on my life, the person I was and feel sad for the lost opportunities, friendships, and happiness.

I look at my life now and cannot believe how different it is, how different I am, how much I have changed and grown. I do not see myself as I used to at all, as defective, broken, and a failure. I am working on accepting myself as I am and being at peace with the journey I am on. I made a decision recently to really live my life, to enjoy it, to make the most of life and not be afraid to live. It feels good. I feel so much happier than I have ever been. The fear of living and the feeling that I don't deserve to be happy creeps back from time to time but it does not have power over me like it used to. I am looking forward to making the most of my life, living my life in a way that suits me, instead of living in fear. 

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

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

Back from my break

I am finally in a place where I have space in my brain to write. My life is going a lot better than it has in a long time. I am coping so much better, for a number of reasons, more on that later.

This is my first post in many months, more than 6 months. I was not able to write for a long time. I wanted to write, but forming my thoughts into words was too difficult for me. I was in a dark place for most of last year, dis-associative, overwhelmed, depressed, highly anxious, feeling very unsupported and isolated. I felt useless and like a failure. I found it very difficult to face reality and interact with people, even my own family (son and husband). This was hard on them and I felt guilty about not being able to be there for them as much as I would like. It was a tough place to be. I felt so locked in myself a lot of the time. A number of events led to me falling apart and withdrawing into myself. First my psychologist abandoned me at a time I really needed extra support and left me in a bad way, this was a professional I had seen for well over a year and had come to trust and believe they had my best interests at heart. Unfortunately this was not the case. The impact of this person's actions was heartbreaking and devastating for me. I was already not coping very well, then to have this person's unprofessional behaviour added to it, it was too much. It was very traumatic for me and I am still healing from it, more than a year later. For a long time I did not realise the full impact of what had happened, it took me time to process it and realise how bad it really was. When I finally processed it fully that is when it really hit me. I was further traumatised as a result. I had real trouble validating myself and believing that it was really that bad, especially when no one else really understood or got it or validated me. 

Then when I dared to share my story about what happened in a couple of ASD women's groups due to others starting threads about this psychologist, I was shut down, threatened, and basically told it was my fault. This further traumatised me. It was extremely hurtful and upsetting. In this state I had to seek out another professional to re-diagnose me in order to be eligible for disability. It was so difficult to come out of myself and find a professional who had the right qualifications. I had no choice though as I knew I needed the support and respite that gaining disability would entitle me to. I went to see a psychiatrist, who gave me the diagnosis I needed. I got paperwork filled in to apply for disability and sent away for that. Thankfully I got it.

 I was traumatised by how the psychiatrist treated me. I felt very dehumanised and picked apart, it was traumatic and upsetting. In particular in one session, the final session. I will never forget how traumatic it was. Prior to that session, things had been okay and I had been somewhat oblivious to how badly he treated me. My Mum told he that he always stared at me the way he did this session but I had never noticed it. She came to sessions with me, thankfully. This particular day he gave me an extra dose of medication (the same that I was taking) on top of what I what I had already taken. The medication I was on takes effect within 5 to 10 minutes. After taking it, I became more aware than I had ever been. I noticed how intensely and scarily he looked at me. I felt he wanted me to give eye contact because I was on the medication so I did and it was incredibly painful and scary. I became more mute as time went on. I left the appointment and was shaking uncontrollably, I felt really emotional and upset. I rang and explained this to him. Due to the fact that I was already traumatised by my previous experience with a professional, I did not manage this well at all. I withdrew further into myself. I stopped seeing the psychiatrist as I was far too fragile and vulnerable. I had to in order to protect myself. When I got home from the appointment, I proceeded to have a two day meltdown where I was crying uncontrollably, feeling incredibly anxious and unsafe. I could not get his eyes out my mind, they were so intense, piercing and I felt like he was bearing into my soul. It was a terrifying experience. I became paranoid that he was out to get me for awhile after that. It took me 3 days to finally feel somewhat calm, and even then I was not sleeping well or able to manage daily life well. I thought about how he had spoken about me in all the sessions I went to him, like I was some sort of animal to be observed. He talked about my behaviours in this distanced observing way. That upset me even more. I felt incredibly vulnerable and scared that I was an easy target for abuse and to be taken advantage of and treated bady and not realise. I withdrew into myself and found interacting with people really hard. I did not want to be treated so badly ever again if I could help it.

Things got really bad for me after this. I felt incredibly alone and isolated. I felt like I was in a glass box and could see my life go by, but wasn't really living. It was all just passing by and I didn't really care. My husband was worried about me and sought out organising extra respite for me through local respites. He did all the paperwork as I was in no place to do so. It took awhile to hear back about it and I did not get support until late last year, around September. We applied around May. During that time I was struggling on my own with little support, it was really, really tough. 

A bit later on there were three upsetting and hurtful interactions online which further added to the pre-existing trauma I was going through. It was too much. That was the final straw for me. I withdrew into myself completely. I withdrew from Facebook and focused on managing my own issues and not letting anything else get into my little bubble. I focused on my own healing and recovery. The break was very good for me. It was about 6-7 weeks. I started to feel a little happy once again and that things in my life might get better. I started to have a little hope again.

During my facebook break I sought out another psychologist and had a couple of sessions with her. The first one was ok. The second one was horrible and upsetting. My need to repeat things lead to it not working out with this psychologist. She did not understand me which led to me perseverating verbally with her analyzing everything I said to mean something I didn't mean. It was frustrating and upsetting. It became a vicious cycle of me repeating myself and her analyzing me. Me trying to correct her and explain myself and her analyzing it to mean something else. I was in shutdown by the end of the appointment and felt she was treating me like a child. I left the appointment and ran to the toilet and cried, sobbed uncontrollably actually. It was awful. I never went back to see her. So unhelpful and unsupportive. That experience did not help me to feel safe seeking out the support of professionals, considering my previous experiences. I did not feel safe enough to trust them, let alone open up to one. 

Even my Dr was not entirely supportive of me, in particularly regarding what happened with my previous psychologist, the one who treated me so badly, that broke my trust. She said I needed to let it go and focus on living my life, which at that point and the state I was in, was impossible for me. I was in a super sensitive, highly anxious state, so any hint of invalidation and non-support would upset me and trigger me. I would withdraw further into myself, feeling even more unsupported and isolated. It was awful.

I hated my life a lot of last year, felt stuck, and didn't know how to improve things. I had almost no hope that things would ever get better and that really, really depressed me. Every time I tried to add one small thing to my life, it would be too much and I would end up a stressed and anxious mess about it. Then I would cry about it and feel really frustrated. This was a vicious cycle for most of last year. I gave up in the end and just watched TV shows, that was about all I could manage. I did some basic housework, but barely any cooking. Parenting was really difficult and exhausting. I often felt I was failing my son. I did the best I could with the little I could give to him. The mess and chaos in the house added to my overwhelm and I felt helpless to sort it out. I struggled to connect with people, I wanted to interact online but found that really difficult. I couldn't put my thoughts into words. I wanted to connect and interact, but the thought of trying to put everything into words was way too hard. So I didn't bother. This added to my feelings of isolation and that no one cared about me and what I was going through. 

Thankfully I had a couple of real life friends who were supportive of me during this time, as best as they could be as they have issues of their own going on. One of them came to my house and helped me organise and de-clutter my son's toys, my sewing area and set up my own little calm down/happy space in the shelves above my bed. I was truly grateful for their help and support. It means a lot to me. Those things helped me feel less overwhelmed by the chaos in the house. It helped me feel less stuck. It made a difference in my life.

My Mum suggested a narrative therapist counselor to me, whom I emailed. She was away for a period of time and could not see me till later in the year. That made it difficult as I knew I needed support right there and then. 

I had several Skype chat sessions throughout the second part of the year with a woman who offered to help mentor me, she was studying psychology so offered them for free. These helped me, but I still felt really isolated and struggled to really explain everything that was going on for me. I did try to and I think she understood that things were difficult for me. I don't know what I would have done if I had not been able to chat to her, even though I was not always able to put all my thoughts into words and explain the depth of my pain and trauma, just being able to talk about stuff and feel heard, helped me feel supported and not so isolated. 

I was going to this mental health centre and had sessions fortnightly for awhile with a social worker there. She was really supportive and understanding of what I was going through, particularly with what happened with my previous psychologist. I found it stressful and exhausting having to leave the house and catch public transport to get to sessions though. Towards the end of last year, there was a change in funding and ownership which meant she was no longer working there, so I stopped going. I didn't have a relationship with any of other other workers staying there so didn't bother, I had no more energy to keep going.

While I was without much support all this drama came up online regarding my previous psychologist and another writer. It was extremely triggering and upsetting for me. I had been going somewhat ok until it all came up online. In hindsight I should have taken a facebook break and let it go, but instead I got sucked in and hyper-focused on it. I was deeply disturbed and traumatised by how I saw this psychologist threaten legal action, gas-light and try to silence anyone who told the truth about her and shared their bad experiences. I have since learnt of many more people who have been treated really badly by her, which is a relief that it is not just me. Very sad that so many people have to suffer harm from one person. Through this difficult time, I withdrew again and ended up in a triggered, anxious vicious cycle state. It was awful. I was angry and frustrated that I had to deal with this crap again. Thankfully healing came from the experience as I was able to connect with others who had similar experiences, which helped me feel validated and not so alone. Being able to talk about my experiences and not be silenced, treated badly and told it was my fault really helped me start to properly heal. That was huge for me. For the first time I was able to talk freely about what happened to me and not be silenced, victim-blamed or threatened. It was a relief.

Towards the end of last year I started seeing the narrative therapist and the respite support came through, which meant I have a disability support worker who came to my house. Those two supports have been life-changing for me. They came a bit later than when I desperately needed support as by the time I started seeing them but at least I got the support I needed. Between their support and me managing my energy better, having stronger boundaries and not allowing myself to get sucked into other's issues, that has really, really helped me to get into a better head space. 

My counselor is amazing! She is incredibly supportive of my journey, very validating of my issues my story, and trauma. I have sent her these two articles (throwing away the Master's tools and neurotypical psychotherapists and neurodiverse clients) and she didn't bat an eye-lid. In fact she found them very helpful in her journey of understanding me and being able to help me. That is when I knew I had found a good counselor who would support me and help me learn to cope better in a way and at a pace that suited me.

I started taking a couple of amino acid supplements known to help anxiety, stress and depression. Those really helped me. I noticed a difference after a month or so of taking them. I felt more clear headed, less overwhelmed, less anxious and less stressed. I felt like I had space in my brain to take the time to notice my feelings, triggers, and thoughts and be mindful of them. This hugely helped me to stop myself from heading into a vicious cycle triggered downward spiral. That, combined with what I was working on with my counselor (Acceptance commitment therapy - ACT), helped me take control of my out of control thoughts and emotions.

Slowly things have improved. I am coping so much better this year. I am extremely careful about managing my energy and what I take on. I have very strict boundaries about my interactions with people and will not allow myself to get sucked into their drama or issues. Thankfully I have not had much issue with friendships this year and when there is an issue I am able to see it clearly for what it is and not let it get to me as much.

Having better support has made a massive difference in my ability to manage my life and my recovery journey. Feeling heard, validated, understood and respected has really helped me to cope better. It has helped to stop fighting so hard to get what I need. I feel I can relax now and actually enjoy my life, instead of getting stressed about every little thing that happens and worrying that I will be treated badly, invalidated, misunderstood or taken advantage of. 

Here is to a better year for me! I am looking forward to living it and not giving a fuck about anything but what I can manage.

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.