I am resplendently Autistic.

Trigger warning for talk about self-hate and feeling suicidal.

Lately I've been thinking a lot about identity in terms of who I am and how my diagnosis changed me internally. How it changed how I viewed myself. Being autistic is an identity to me. It explains so much about me. I cannot be separated from 'my autism'. Autism colours every single experience I have. It did before I was diagnosed. I just did not know about it or understand why I felt, acted and thought so differently to most of other people I met and interacted with. I felt like an alien from age 6. My diagnosis changed and saved my life. I do not suffer from autism either. I live it. It's my life. I'm tired of hearing people who say it has to be person first language. That it must be person with autism. I'm not with autism. It pervades my being. I am Autistic. Autism is not a separate part of me that I carry around and put on when I feel like it. Autism is not something I wear or choose to put on. It's always there colouring my world, thoughts and feelings. I actually really like being Autistic, most of the time.

I find it very threatening when people try to tell me to be more normal or tell me to fix myself or that autism can be cured. I have spent years hating myself for not being normal enough. Hating myself for not being able to fix myself. For trying and constantly failing to fix myself so I feel less, cry less, connect more, understand socially, talk less, talk more, to care less, to not be so anxious, to go with the flow. Every single time I tried to do those things I could maintain it for a short time but then it would exhaust me. I would perseverate over and over trying to figure out why I could not be like that all the time. I wanted to be that funny, social person, have-it-altogether person. I couldn't maintain being that way. I didn't know who I was a lot of the time. I would try out different persona's, put them on like masks, mimicking others, hoping one would fit, hoping one would be the 'real me'. People talked about finding themselves, how great that was, how happy they were now that they had found who they really were. I unfortunately kept losing myself or thinking I did.

I find it very triggering and upsetting when others tell me to be more normal, to fix myself or that there is a cure for Autism. I have spent so many years trying to be more normal, to fix myself and failing incredibly that I find it painful and upsetting when others around me have this attitude that I can just fix being Autistic. I cannot, I have tried and failed over and over. In fact trying to be more normal became an obsession for me, a very unhealthy obsession. Thankfully my new understanding of myself stopped my obsession.
I have decided I do not need that attitude in my life, so I am selective about who I interact with. This is a healthy boundary for me. I am too fragile and vulnerable right now to cope with others trying to project that onto me.

It was not until I started learning about ASC, females and how it tends to present differently (Aspergirls by Rudy Simone) that I began the turbulent journey of self-discovery, acceptance and who I really was. I believe the new knowledge about being Autistic saved my life as I was suicidal and hated my life. I did not know how to keep living the way I was. I felt so fractured after becoming a Mother. I could not maintain the other selves. I felt so lost, alone and broken. Reading Aspergirls was like the light at the end of a very long, dark tunnel. I finally had answers and a small beacon of hope. That hope began to grow and grow. I finally had hope for a better life and a way of living that suited me.

It's been very turbulent since my diagnosis. I was already very overwhelmed and was trying to do too much. My diagnosis was just one more huge overwhelming thing added to a big pile of things that were already too much. I fell apart. I regressed. I cocooned myself away from the world. I hid from the world. The world had suddenly become too bright, noisy and overwhelming for me. It was too hard for me to try to stay connected with people in person. I discovered the joy of online socialising. I discovered AS women’s groups. I interacted with so many women who were similar to me. It was amazing! I have learnt and am still learning so much from these amazing women, many of who are still my friends today. We have never met but we connect and share so many similarities. I read obsessively about autism and blogs by autistic bloggers. I processed. I accepted parts of myself I had tried to keep hidden as I thought that made me evil and bad (thanks to religion). I went through numerous overwhelming emotions. I grieved for the little misunderstood girl and teenager who did not get the support she needed. I felt joy, relief, sadness, and anger many, many times about so many different memories from my past. I felt those same emotions in terms of my future and who I really was. It really was very turbulent and difficult for me. I began take off layers and layers of personas and walls of protection I had put around myself, strip them away to examine my true self. I found this very healing. I am still doing this process of examining myself but it has settled down.

Things have settled down for me internally. I don’t feel the raging storm of emotions, memories. The intense need to know every single tiny thing about Autism and what being Autistic means to other Autistic people. I still find it fascinating and am obsessed but I don’t feel this intense need to know it all in order to understand how I work. I finally know myself and how I work. I am kinder to myself, I don’t hate myself and I don’t feel suicidal. I have suicidal thoughts occasionally but I let them pass through my mind like a train on a journey. I don’t need to accept or acknowledge them.

When I say I am Autistic, please don’t correct me. I finally have an identity which explains an incredible amount about me, who I am and how I work. I like who who I am, finally. I like how I do things, how I see the world, how I communicate and interact with others. Understanding myself has given me the power to work with myself rather than against. This is indeed a powerful thing for me. 

I am resplendently Autistic.
I wrote a poem last year titled 'I am Resplendent.'

[Image is of me (Kezza) on a swing (one of my favourite calming activities to do - a stim), wearing a gray tshirt with a butterfly on it. I am swinging in middair and smiling].

My Spectacular Breakdown: Burnout, Acceptance and Action.

I experienced Autistic Burnout in February this year.
Here are the links to the three parts:

My Spectacular Breakdown: Autistic Burnout

My Spectacular Breakdown: The Acceptance

My Spectacular Breakdown: Action Plan

I hope my story can help others in their journey to better understanding themselves and accepting themselves.

My Spectacular Breakdown: Action plan

Other things I am doing to help myself: making a big visual schedule with tasks broken down into doable easy to remember steps, an emotion meter, a spoon meter, a washing roster on it with wash cycles on it, a flexible weekday plan/schedule, a crisis/emergency day plan, a job list of jobs broken down into small doable tasks. I will have a BIG warning on it saying that I only need to do what I can manage and to not get overwhelmed.

I am also hoping to buy the CAT kit by Tony Attwood as I believe it will really help me with my stress, anxiety, emotions and other things.

I am going to make up different scenario social stories to help me cope with the unpredictable from pixton.com.

I am in the process of trying to set up an emergency activity box for Possum on days where I am not coping and he's home. Ideally I would like to have a number of activities set up and ready to go.

I have just bought myself a small week to a page end of financial year diary (July 2013-June 2014) which will help me not to overload myself with appointments which happened this past week. I rely on my phone for appointments and set reminders for the, because I can't see the week laid out in a visual calander I have tend to book too many things for one week and then spend the following week in recovry mode. The week to a page diary will certainly help me achieve this. The Early Intervention Specialist told me to schedule in 'nothing days' where I just do nothing but self-care and whatever I feel up to doing.

All of the above things I need to do requires a lot of energy and money which I don't have enough of. I desperately need extra support and money to be able to do these things which is why I am hoping my disability appeal will be accepted.

With the visual schedule I don't even know how to break it down into smaller doable tasks. It feels rather overwhelming. Yet I desperately need it. It is the same for the other things I am trying to do. It is overwhelming and challenging. I am going to take it verly slowly and ask for help.

My executive function is low. I find it difficult to do basic things like cooking, cleaning, organising and relationships. I use most of my spoons trying to manage my life as it currently is with the responsibilities I have. Anything extra and unpredictable wears me out hugely. I don't have the energy to cope with anything extra. I am using my spoons to cope with what I need to do to cope better. It really is 1 step forward and 3 steps backward so I feel I am barely getting anywhere, that I am stuck in a vicious cycle.

This is not something I can just snap out of suddenly and I will be ok. There is no quick fix to this situation. I know what I need to do but it will take time to heal and improve.

I have this desperate need to write. I need to write it all out of my head, to help me process everything, to help me understand myself better. Writing is a necessity for me right now. I write in utter desperation to get it all out of my head, to finally understand myself. I will stay stuck if I do not write. I feel called to Advocate for myself and others on the Spectrum. I have finally found my calling.

I am at peace with where I am at right now.

Summarised version here.

My Spectacular breakdown: The Acceptance

After I had stopped taking the antidepressants and felt so great. I started getting back into Facebook and connecting with people. It was like my mind finally felt ready to socialise somewhat. I finally felt ready to get involved on Facebook again. I started chatting to a few close friends online. One in particular. This friend has been incredibly helpful in my journey of acceptance, processing and moving forward to becoming the person I am meant to be. She listened to my many rants, vents and emotional brain dumps as I processed so many BIG things in my head. You are awesome, my dear friend! Thank you!

As I started to get back into Facebook I read many helpful articles on Autism which really helped me to understand myself better and I started to shed off the layers of coping mechanisms I had. I also started thinking differently about myself, being more accepting of my Autism and how my brain works. Instead of beating myself up and practising self-hate. I began to accept myself in the moment for who I was and what was going on. I did not try to fight it and get upset because I was not coping how I thought I should cope. Somehow this positive mind shift came about.

I strongly believe it is from the almost 12 weeks of me saying a positive script 50 times daily. My Mum is a counselor and last year she suggested I try this new therapy she had been trained in. The basic idea works on the notion that your subconscious is like a child and believes anything and everything you tell it (yourself) so if you say more positive things to yourself and about yourself eventually your brain will form new neural pathways for more positive thinking. It is called brain re-wiring therapy. It is based on the something written in the book 'The brain that changes itself.' I had a few sessions with my Mum and we came up with a script. I started saying this script 50 times a day and went for almost 12 weeks of saying it 50 times daily. I was only meant to go for 6 weeks but I went for longer. Using my Autistic determination to keep saying it. I gave up after I went into Autistic burnout as it was too stressful for me. I still remember it now and say at times when I start to feel myself get stressed. I find myself calming down faster upon saying it. My Mum told me that the effects of saying this script 50 times a day for 6 weeks still worked more than 6 months later. Powerful stuff!

I had been seeing my Psychologist fairly regularly in this time. It was about 8 -10 or so weeks since my breakdown. My psychologist was helping me to manage my emotions better, and to recognise when I was getting close to shutdown or meltdown. She talked to me about emotion surfing and that I did not need to react to things when they happened. She sent me a link about it. I started trying to practise it when I felt my emotions become intense and overwhelming. It really helped me to just start letting things go. I started saying to myself 'I love and accept myself unconditionally in this moment.' When things around me were chaotic, stressful, upsetting, when I felt overwhelmed. I said that statement. It really helped me to just accept things as they were instead of fighting them. I also started saying my brain re-wire script again.

After a week or so of practicing this my husband got a $500 fine from the Police. I was not in the best place when I received the news. It was around 9:30am and I was trying to change Possum's nappy. Possum was home from daycare because he was sick once again. Atrus texted me and I just lost it. I went into a crying hysterical meltdown. I vented about it on the AS Mothers' group. I was so mad and frustrated. I did not know how we would pay for it. Everything felt so hopeless. I did a lot of catastrophic thinking. I spent the day in shutdown, rocking in the rocking chair. My Mum came and took Possum to look after him as I was not in a state to manage.

However, I did not try to fight how I was feeling. I did not beat myself up and get mad at myself for being this way. I did not give myself a talking to about how much of a child I was acting like. I just let. it. happen. I accepted it as a process that I had to go through. I knew it would pass. I knew in time things would get better. It took me about 8 days to recover from the horrific meltdown during which time I had mild depressive episode but it passed. I did not allow myself to get into a vicious downward spiral of self-hate or negative thinking. I kept thinking to myself 'this will pass. In time I will feel better.' I did not judge myself for how I behaved or what I was thinking. I just accepted that this was where I was right now and that I was ok, that it was ok. I practised mindfulness and also repeated the phrase 'I love and accept myself unconditionally in this moment.'

It was after my horrific meltdown that I changed my name to having Âû at the end. I shared a little about my story on the Au Facebook page. They welcomed me and cheered me on in my acceptance journey. I felt relief, I felt free. That I was finally coming home and accepting who I was and able to start the journey of discovering myself. I felt a part of a community. I no longer felt I had to fight who I was, to beat myself up for my neurology. It was a defining moment for me. I finally felt at peace. I realised I was ready for the Âû name change. So I changed it. Since then it is a constant reminder for me of the Âû family I belong to and advocacy I feel intensely called to do.

Since I started accepting myself, practicing mindfulness when I have meltdowns or shutdowns, I find I recover faster from them. I don't sink into a big depressed heap and take weeks to recover. I accept where I am at, don't let my negative thoughts take hold, notice them and let them move on. I am much kinder to myself and accept that this is where I am at (mostly). I do struggle with days where I just seem to do nothing but recover from a shutdown. Those days are the hardest to accept but I am slowly getting there.

When I first had my breakdown February my DASS test was 10/10/19 (depression/anxiety/stress). I did another DASS test a few days ago and it was 4/11/19. I am not depressed. I am severely anxious and stressed though. I see this as a result of trying to live a life that was not suited to me. I pushed myself way way too hard to manage everything that was expected of me and I spectacularly fell apart.

I am in the process of appealing my disability pension because I can clearly explain myself now. I understand myself now and what is going on. Prior to my breakdown, I was clueless, I didn't know how to verbalise what I needed to for my application. I know that I will meet the criteria this time. My Psychologist, Doctor and Early Intervention Specialist are all writing letters of appeal explaining my situation and how I meet the criteria. They also explained that I did not actually understand what was going on for me at the time that I applied so that was why it was not clear to them how bad I was. I am also going to ask Atrus and my Mum to write a letter explaining things from their perspective. I will also write a letter. Once we have got all that together I will send it off and wait in anticipation.

I am trying to learn my limits, signs of doing too much and my triggers for shutdown/meltdown before they happen and then do self-care. My self-care currently is exercising daily, listening to a relaxation exercise and mindfulness. I am in the process of putting together a sensory/emotional regulation kit for myself which I will take everywhere I go. It will include cue cards with instructions of what to do to calm down or what to do to deal with anger. It will also include a protein snack so that if I am caught somewhere waiting and get hungry I won't go into a sugar low and then shutdown. Once I have put it together I will share a photo of it and what is in it to inspire others.

The Early Intervention Specialist has really been helping me with mindfulness, relaxation and trauma. He is trained in all three and will help me learn more about each one. He is also going to help me heal from my childhood trauma which is really good. I need to heal from my past traumas. I am so grateful that I found out about him. He is really open to learning about Aspergers too. He went to a Tony Attwood seminar a last week. He told me he is seeing Aspies everywhere now. I had to laugh.

I am finally in a place where I accept myself as I am. I feel so much peace and joy in who I am. I am broken, fragile yet I am strong. I am healing, I am improving. It will take time. I do not know how long. Tiny steps forward and acceptance of the process is the key. My poem Resplendent explains the the process I have been through and am going through.

I pushed myself for so long and tried to maintain a level of function that was well beyond my level of coping because it was expected of me to cope by my family, Atrus, and society.  I have regressed. I am more severely Autistic now. My coping levels are low, very low. I get overwhelmed, overstimulated, stressed, and frustrated easily. It is a sign of pushing myself for too long and not having any idea that I needed to pace myself and be kinder to myself.

Things that I used to find easy to manage are now quite challenging for me. I find myself going into shutdown easily, in the middle of trying to do something and then I can't think clearly and forget what I need to do next. So I start flapping in frustration and speak repetitively in a weird shaky voice because the words just stop being able to come out of my mouth. I have no control over this.

I have been remembering childhood stims. Flapping is one I remember doing. I flap when I am happy and flip my hands when I am stressed, anxious and overstimulated.

If I am not too overloaded and close to shutdown and there's not too much noise I can articulate quite well to Atrus what is going on for me. I was not always able to do this as mentioned earlier. I know now what is going on for me. I understand myself so much better.

My brain feels frazzled. Like it is unraveling constantly. I often spend so much time and energy trying to remember the process of what to do for an activity that I get overstimulated and tired. It is very frustrating. I forget the process of how to do things. I often stand lost in the middle of a room wondering what I was meant to be doing. I find myself going in circles around a room until I remember what I'm doing and what to do. This means that everything takes me a long time to do. I really need extra help to do things, to work out the steps involved of how to do things. My delayed processing is very slow which means it takes me awhile to work out the steps involved and what to do next. This happens to me when there is too much going on and being demanded of me. I very quickly go into this state. My shutdown threshold is rather low.

I find myself constantly losing track of time and everything taking a long time because I am so overloaded that I find myself needing to almost constantly stim or withdraw (shutdown) or desperately needing to write. This makes doing anything incredibly challenging to do and small easy tasks are hard and take me a long time to complete. It is very frustrating because I feel I can never get on top of things. There is so much to do and I can't manage it all any longer. So I don't. I accept that this is where I am at right now and don't let myself worry about what I should be doing.

When Atrus and Possum are home there is a lot of noise, busyness and things to do. I often go non-verbal and into shutdown in these times. I feel very confused and overstimulated too. I feel lost because I don't know what to do next or how to, because of all the busyness and noise. I feel I need to keep going and continue what I was trying to do but I often can't. I usually leave the room if possible to stim, and calm down.

I can manage quite easily writing, advocacy and networking, but other busy, sensory overloading things are more difficult for me. It is all online and written communication so it is easy for me to do. I don't know how to manage being a Mother and wife in this state. It takes a lot out of me. The times Atrus and Possum are home I tire easily and often need to withdraw. Earlier on I have been made to feel guilty by others for being this way. That I am being selfish. I am not! I don't have much more to give. My spoons get drained so easily by the small amount of responsibility I do have. I have let go of the guilt now. I have to, in order to heal.

Ideally Atrus would be at home and be my full time carer because right now that is what I really need. We are trying to work towards that. Atrus would like to work from home part time. He is a Graphic Designer so it is doable for him to work from home. We are quite interested in unjobbing. That is our goal. To completely change the way we live and really slow down our lifestyle. I am hoping I can get disability pension as that will really help us transition get out of this massive stress filled vicious cycle hole we are in. Atrus isn't in a very good state either. He has mirror depression, anxiety and is very stressed. We desperately need to change our lifestyle sooner, rather than later.

In time everything will improve. I know it will.

My spectacular breakdown: Autistic Burnout

In February this year I noticed I was not able to cope at all with anything. I was spending the day withdrawn (in shutdown) from my son, on my iPhone doing stuff (stimming) on Facebook. No matter how hard I tried I could not manage anything more. I was irritated by him, had no patience for him and no energy to do much Mothering. I didn't know what was going on. I had not long been diagnosed with Aspergers' (September last year) so my head was super busy processing everything and desperate for more information to learn more about Aspergers and how it fit into my world. I did not know how to manage Motherhood, being a wife, doing housework, and process this huge amount of new information all at once. My life had been turned upside down and I did not know what I thought anymore, or who I really was. I was experiencing Autistic Burnout.

Prior to this I had started writing a book for and about Mothers on the Spectrum. I had been already pushing myself so hard to manage (it was expected of me) everything else that I did not realise that starting one more project (adding more stress) would send me over the edge. Very hard lesson learned - pace yourself!!

I am currently not in a good place at all. I am super sensitive to everything and do not cope well with change or small irritating things right now. My husband and Mum are supporting and helping me a lot. I carry on but rely heavily on my husband, Mum and daycare to cope. The reason I am in such a bad state is because I have had way way too much stress the past 2 years. We moved three times (once interstate), I had my son and really struggled to adapt to motherhood - still transitioning I think, learnt about me being Autistic and received my diagnosis, we lived with my parents for 4 months (which was very stressful). I do not cope well with stress very well. I am trying to learn better ways of dealing with stress. I feel like all the stress has built up and I have reached a limit. So I reach shutdown point very easily which means it takes me much longer to recover from my breakdown. Plus I have a lot of things I am trying to process in my head since my diagnosis. It is life-changing for me and is rather tumultuous. I have had a delayed reaction to all of that stress and my diagnosis and it is all sinking in and hitting me now. Each time we moved and also after I received my diagnosis, the realisation did not hit me. I felt fine so just carried on with normal life and pushed myself to function at a higher level than is normal for me. Now that I am processing all of that, it is just too much. I know in time I will improve as I process it all. I feel like each shut down is a set back in helping me recover.
I withdrew and I still need to fairly regularly. I desperately needed to. All the while I was getting told by my family and others to just 'carry on and cope.' That 'others had been through harder times and managed ok. That I had a son and husband who needed me.' So I turned this attitude towards myself. The self-hate I had developed for years due to not understanding myself started to speak louder and louder. I tried so hard to ignore it. The relief and self-acceptance I had felt when I first realised I was Autistic was gone. I felt depressed, anxious. I was highly stressed. I could barely manage anything. I had been pushing myself for months to keep going. To cope at a level that was expected of me, that others expected of me, that my family expected of me. I suddenly realised that I could no longer manage that level so stopped trying. It was too much. I literally collapsed in a worn out heap unable to move.

For weeks (perhaps even months) prior to this I had been spending most days what I now realise to be shutdown. This went on for a few weeks before my husband and Mum said to me, that something needed to change. I had no idea what. I was not in a place to think clearly or decide anything. I did not fully understand what was going on for me. I knew my son was suffering and needed me. Yet I could not manage to do much for him. I felt so helpless, a failure. It was horrible. I beat myself up so hard and so much for not being able to be the Mother I wanted to be and the Mother I knew my son needed. I barely remember those days now. They are a blur. I was so out of it and in an almost catatonic state every single day.

The catatlyst for change was my Mum going away for a 2 week holiday. She had been planning it for awhile. I had been relying heavily on her for support to take my son when I really wasn't coping. She told me something had to be organised while she was away as she knew I would not cope without her. My Mum sent an email to my psychologist explaining how bad things were. I had an appointment with my psychologist and we came up with a plan of action to help me improve. I had not been able to explain just how bad things were as I just did not have the words. I am grateful for my Mum stepping in and explaining to my psychologist how bad things were.

My Psychologist did not realise how bad things were for me. I did not have the words to explain myself to her.I just went to appointments, talked a bit about my struggles as a Mother and we also talked about emotion and stress management. Things that I could do to help me cope better. However I was not in a place to be able to put anything into action. I had had too many shutdowns and never been able to fully recover from them.

The plan my Psychologist and I came up with was: go on medication, send my son to family daycare, exercise daily, do a progressive muscle relaxation exercise twice daily, organise help for cleaning and meals (if needed) and see my Psychologist weekly.

I rang up the Early Intervention Specialist I used to see at the place we lived last year and explained the situation to her. How desperately I needed extra support. She referred me to an Early Intervention Specialist that lived closer to me and passed on my files to him. I got in contact with him and arranged an appointment. At first I was a bit unsure about him and wasn't sure how to explain myself to him. He filmed my son and I playing and interacting which we planned to analyse which we haven't yet. He reviewed the Circle of Security course I had done last year to help me connect better with my son. He explained it in more detail and refreshed my memory. I have had fairly regularly sessions with him. They have been very helpful to me.

We organised for my son to go to Family daycare. We did all the paperwork to get my son into daycare. I was very hesitant to send him as I had this dream that I would be this awesome stay at home Mother that did everything for my son. I slowly had to let this dream go. It was dying. I could not maintain it any longer.

My husband and I did not know how we would afford to send him for more than 2 weeks as we live on one income and I was obviously rather incapable of any sort of work. As we explained things to the head office at the Family Daycare centre we found out that there was help for families in our situation. Where a Parent is suffering a breakdown and not able to parent effectively. They said they could apply on our behalf. We just had to get letters from my Dr and Psychologist explaining the situation. So we set that in motion. I was not able to fully comprehend the situation in order explain how much I was struggling and in how bad a state I was to my Dr and Psychologist. They did not write what the daycare office needed to hear, so we didn't get it. I didn't cope with hearing the news because I didn't know how we were going afford to have our son in daycare and I desperately needed a break. I vividly remember that day because it was my birthday and it was the worst birthday I have ever had. I spent the day in shutdown, crying, unable to be a Mother to my son. My son was meant to go do daycare that day but he was sick and couldn't go. A dear friend of mine was meant to visit me but she couldn't come due to illness either. Then I got the news that we didn't get the special child care benefit and it was just too much (the trigger). I was already so incredibly fragile. I went into shutdown and I was furiously texting Atrus explaining things and urging him to explain everything on my behalf because I knew I could not go on like this. I needed a break.

I pleaded with Atrus to ring them and explain how bad it was because I knew how desperately we needed this. He rang them and explained everything, how bad it was, what we needed. They decided to re-apply based on his statement. We found out later that week that the benefit had been approved. I was so relieved. I felt there was some hope at last.

I went to my Dr got a prescription for medication, an anti-depressant, very hesitantly I might add. I didn't really like the side effects. I felt out of control of my body. In time I noticed a difference and began to feel less anxious, stressed and was sleeping a lot better, which was a positive amidst the negatives.

For five weeks I withdrew. I became a recluse, a hermit. I spent 5 weeks doing basic self-care - exercise, relaxation, and watching TV series. I watched all of Battle Star Galactica and most of Merlin. I did not have the energy to do much else. I did the bare essentials in housework - kept the kitchen fairly clean, washed clothes, hung them up and then folded them whilst watching one of the TV series. I did not socialise. I barely saw my family. I did play with Possum a bit when he was home, when I could manage it. But mostly I was just wanting to escape reality. I couldn't face it. I didn't have the energy to. I withdrew from Facebook. I could not manage getting too involved Facebook. I would lurk on my favourite Facebook groups. I read threads and posts. There were things that interested me but I just could NOT manage to even type anything that made sense. Everytime I tried to write something I just could not get the words out. It was horrible. I felt so incredibly isolated, alone and stuck. I had no way of communicating anything to anyone. Just felt so lost, isolated and alone in my head.

Before I went into my 5 week hermit period I started an AS Mothers' Facebook group. I started it at a time where I was feeling marginally ok so I had some spoons to get it started. The reason I started the group was because I felt so incredibly alone, as there was nothing for Mothers on the Spectrum, no support, nothing! I had googled, searched for it and came up with nothing. At the time I was contacted by another Mother who connected me with two AS Mothers (from a different parenting group) which inspired me to start the group. Then I withdrew into my hermit cocoon. I somehow kept the group going. I asked a weekly question of what the highlight had been for everyone's weeks, that sparked discussion so people opened up. I also shared links of interest when I could. But that was all I could really manage. Somehow the group thrived and it is now going really well. I am pleased that out of such a dark, lonely, challenging time something amazing has grown.

I was still living in this hermit state of just wanting to do nothing, face nothing. To be left alone for a very long time. Every time something unexpected happened I did not cope well with it. In the early weeks of Possum going to Daycare he was sick often so had to be home which was very difficult for me to cope with as it interrupted my flow of improving.

I started the process of applying for disability pension as it would help us financially. I really struggled with organising myself and working through all the paperwork. It was a nightmare. I didn't know how to explain myself. I didn't understand what was going on. I was in almost constant shutdown so could not verbalise what I needed to. It was a hard, dark, lonely place to be. I had my assessment with Centrelink and did not reach the criteria. I need to reach a 20 point criteria. I did not understand how to explain how bad I was. I also did not realise that I was meant to explain what I was like on my worst day as I have a fluctuating, episodic invisible disability. So I didn't get the disability pension, much to my disappointment. I let this go for now.

I felt incredibly out of it. Like I was living in a dream-world, that I couldn't break out of. I didn't know when this would end or how to improve things. I was still very much in a vicious cycle of self-hate. Every time I did not cope with something, had a meltdown/shutdown or didn't do something how I thought I should I would get depressed. I started self-hate thinking and it quickly spiralled out of control. I would end up feeling very depressed. I was merely existing. I could not manage much else. I felt like a failure. I felt like a nothing. I was really struggling to accept my limitations. Struggling to let go of my dreams of who I thought I was, of the Mother I wanted to be, of the wife I wanted to be. It was all unraveling and breaking up before my eyes. I felt so disheartened. I did not know where to go from here. I was grieving for my dreams for my NT self, for the self I had tried so hard to create and maintain to appear normal. I did not want to be this disabled, broken, messed up person who could not even manage to parent her own son. I was angry about it. I was mourning. I did not want to accept it. I was in denial, in a sense. I knew, deep down that I had to accept it, it was just a question of when and how. The slide below is from Karla's ASD page. It describes the process I was in and where I very nearly got stuck in the vicious cycle of awareness/deny/concede/fear/anger/fix. Thankfully I was able to slowly move past that, in time.

I started getting to a place where I was able to think more clearly after the five week period. I started feeling a bit more positive about life, only slightly. I felt less stressed and anxious. I was able to think somewhat more clearly due to the antidepressants. I had never felt very happy about being on antidepressants. I just did not think it was the best thing for me to do. I decided to get a second opinion. I went to see a second Dr who I knew was quite holistic in his approach to medicine. I explained as best I could to him, at the time, with my Mum there to help fill in the gaps, what was going on and that I wanted to try something else instead of the antidepressant I was on. He suggested I try 5HTP, but I had to wean myself off the antidepressants first. He explained to me how to do so and then told me to come back in a couple of weeks. I went home and started weaning off the antidepressants. The weaning off them, the withdrawals was horrible. I suffered migraines, nausea and felt a bit out of it at times. The migraines and nausea were the worst. I slowly reduced the dose I was taking every few days as my body adjusted.

The first weekend I started weaning off them the AS Mothers' had their second meet which I organised. It went ok. It was the wet season so we had wet weather plans, which was at a Mc Donalds. Not an ideal place for Autistics to meet, especially in the children's playground. That's where we sat, at a table in the children's playground area. It went ok, it was nice to meet so many Mothers on the Spectrum all at once, even though it was rather overwhelming. It was, overall, a fun time.

I think it took me a week and a half to wean off the antidepressants during which time I experienced horrible nausea and migraines but I stuck it out and survived. I kept thinking to myself 'this will end soon, once the drug is out of my body for good, I will feel better.'

I over did it a few times and sunk back into shutdown. I do not know when I have overdone it and tend to keep going when I am already at my limit. I am still trying to figure out what my limit is and how many spoons I have. An ongoing challenge for me.

Once I had completely stopped taking the antidepressants I had two days of horrible withdrawals and then I felt fine. I felt great. I felt like myself once again, I actually had an appetite and I had motivation. Whilst on the antidepressants I had hardly any appetite. Food I usually liked just did not appeal to me. I also had low motivation, and my emotions were fairly flat. I did not like what the antidepressants did to me and how they changed me. I liked feeling like myself once more. It was a good feeling. I felt free and liberated. The antidepressants had gotten me out of the hole I was in, given me the space to just be a hermit and then finally start moving forward.

It's not just a phone call...

It's not just a phone call or why the unexpected is challenging to adjust to

Today I finally built up the courage to make a couple of phone calls I really need to make. That I have been needing to make for a few weeks. I have big to do list which I am attempting to get through and these phone calls were one of the most important things to do.

Here are two fantastic cartoons by the Oatmeal which articulately illustrates why I dislike making phone calls, in particular phone calls to Customer Service type places where one has to spend most of their time trying to get a robot to understand you, and then wait for eternity listening to irritating music to actually to speak to a human and then finally speak to one. One is a bit crude (warning for those who are easily offended).

10 Reasons to avoid talking on the phone and Why I would rather be punched ... than call Customer services.

So I dialled the number for the first call and waited. I went through all the robot questions and waited, listened to irritating music. I finally got to speak to someone and then they said they had to re-direct me to someone else. So I am waiting on the phone listening to irritating music waiting to speak to an actual person when I start to hear *beep* *beep* and I know what this means. I think 'NOoooooooo!!!' The cordless phone battery is going flat. I have only been on the phone for less than 10 minutes and it is already going flat. I pretty much see red straight away. I am beyond mad and frustrated with the whole situation. I shout, vent, say some choice words and slam the phone down, even though it is a cordless phone and I just need to push the button.

It is not just a phone call. It so much more than that. I put so much effort into getting to a place where I was able to make those important calls. Now that opportunity has been stripped of me and I have no idea when I will be in a place to cope with making them again. These days since my Autistic burnout simple things like a phone call take much more effort. I have to be in the right frame of mind, with enough spoons, and my executive functioning must be at a level where I can cope with talking to a stranger and explaining the things I need to explain. I have regressed. My functioning levels are much lower and my Autistic traits are more severe since my burnout. I have no control over this. I cannot just suck it up and keep trying as I have been told to do in the past. I am too worn out. Day to day living is enough for me to manage, let alone extra things like phone calls.

I have had this big list of things to do written down for awhile and it keeps growing as time goes on. I have had unnecessary stress of family misunderstanding me and doing things which were not helpful or supportive at all. Thankfully we had a family meeting and have mostly sorted this out. However, due this unnecessary stress I have been unable to manage anything barely except looking after myself, as I have spent most of my time in either shutdown or meltdown on and off for the past few weeks because I was forced into stressful situations when I was not able to cope with them. So I just have not had the spoons or executive functioning to even attempt anything on my list. It was all too overwhelming. Thankfully now that my family understand me better, that has taken the pressure off me as they were expecting things of me that I could not realistically do. Not in my current state. I am still incredibly drained from all that has happened the past few weeks but am slowly recovering. The relief of having my family understand me gave me some extra spoons so I felt I was able to manage the phone call. It still took me more than half the day to get to the point of actually making the call. But the cordless phone had other ideas.

I had taken so long to build up the courage to make these calls and then slapped in the face with flat batteries before I even get to talk to a person instead of a robot. Incredibly frustrating and upsetting!

It's not just a phone call. It's so much more than that. It was to be the beginning of me starting to organise myself and get on with the things that need doing. It was many things.

My husband was home so he removed my son while I ranted and raved. I knew I had to burn off some energy to calm down. So I got myself ready for a walk and off I went. I walked for 40 minutes listening to relaxing music. I also stopped at a playground and had a swing for about 10 minutes which was very calming. I returned home a much calmer person. I was still mad but calm enough to think clearly. I was mad enough still that I poked my tongue out the useless flat phone and then I laughed which broke the tension. 

Needless to say we have a non-cordless phone now. I will attempt to make these phone calls next week. I am going to have a very quiet, relaxing weekend and do lots of self-care to regain spoons from all the stress over the past few weeks.

To others it would appear that I am getting extremely upset and having a meltdown over a silly thing but really I am not. They do not understand the background to why it is upsetting and frustrating for me. This happens to me with other things too. It is very hard for me to adjust to unexpected change when I am really counting on something I really do need to do.

So just remember it's just not a phone call... or any number of things. It is more than that.

Family Meeting with my Psychologist

The meeting with my family, Psychologist and myself was today. It went very well. Much better than I thought it would go. My Psychologist handled the meeting very well, I thought. We recorded the session so that I can listen to it later. I think it will be very helpful for me to do this. So much was said that it was all a bit of a blur. Everyone got to have their say and voice their opinions. My psychologist explained very well about Autism and how it affects my life to my family. In particular about meltdowns, Sensory processing disorder, delayed processing disorder. My family get it now. Yay! I don't feel so alone and misunderstood in this journey of understanding myself better. It sure helps to feel understood. 

My Psychologist wrote up a plan for me to do and for my family to do, so that we can work together better.

Here is my plan that she wrote for me:

1. Brainstorm different scenarios for different variations of things that could happen and write a social story/visual plan of how I will cope with various unexpected changes.
2. Create a visual timetable - using a whiteboard or velcro board
3. Calm inside (body)
   Calm inside (home) - environment
4. Appeal Disability pension.
5. Back-up meals in the freezer and activity schedule for my son.
6. Buy or make a board for the visual time table.
7. Possibly anxiety medication?
8. Create a Code for my emotions to communicate with my family, e.g. Angry - red and then tell them on a scale from 1-10 where I am. If I am really angry, I will say I am a red 10 and they will know to leave me alone to calm down. The other emotions are: Happy, Sad, Stressed/anxious, and meltdown. I need to choose colours for the rest.
9. Develop a crisis plan that works for helping me to calm down from meltdowns.
10. Buy a CAT kit

I added the last one as I think it will be very helpful to me. My Psych showed me her CAT kit at the end of the session. I could clearly see how much of a HUGE help it will be for me and how much I need something like this. She said she has used the CAT kit for children and adults on the Spectrum that she has worked with. It is not cheap though.

I am very drained. It has been a big day. I don't have the spoons to write much more. I still need to process a lot of what has been said and figure out how to actually do this, to make it happen. Inertia often gets in the way of things happening. Life is incredibly overwhelming for me right now. I am very much a hermit and do not feel up to doing much at the moment. I need to rest and regain spoons to cope with life better.

On the positive side I have found a visual timer for myself to stop myself from hyperfocusing and getting so absorbed that I completely lose track of time and then do nothing else. It is ridiculous how easy it is for my to hyperfocus lately and how hard it is to stop. I will share a photo of it soon. I was planning to buy one from here, but DH reminded me of one we already had from MIL.

Video about the CAT kit.

I am off to do some colouring in. Yay! I am in the process my own colouring book out of free colouring pages, special paper, coloured paper and raffia.

My chew/bite necklace has arrived! I have used it. Great to use. My son likes it and has had a bite too. I have bought him his own chew/bite toy.

Frustration, anger, Autism and others expectations

This blog post sums up how I feel about the world right and how my family makes me feel. They try to support and understand me, but unfortunately it does not come across that way to me. I don't have many words to write because I am so drained by all the stuff going on in my life and with my family right now. I love my family and am very grateful for the support they have given me. I fear now we are not able to understand each other very easily anymore. Especially as I am understanding myself better and how my brain works. We are at a crossroads, my family and I. We will either work this out, or go our separate ways. It is a shame it has come to this, but for my own health I cannot keep advocating for myself to people who simply do not understand me. I do not know how to explain myself any more clearly to them. I am too worn out from trying. I need to concentrate on recovering and coping better. I don't need to be constantly explaining myself to people who just do not understand me when I am already so incredibly drained. I don't need judgement when I am vulnerable. 

The quote below was shared in a Facebook group I am part of and it is very relevant to my journey. I am exhausted, experiencing Autistic burnout but I must keep standing strong and advocate for myself.

“Never be bullied into silence. Never allow yourself to be made a victim. Accept no one's definition of your life, but define yourself.”

― Harvey Fierstein

That is all I can manage. I feel like hiding in a hole for a week or two, but not possible in my life right now.

Autistic Burnout

What is Autistic Burnout?

I experienced Autistic burnout a few months ago. Coping with life became too much for me upon realising the full impact of my Aspergers' diagnosis. I had a major delayed reaction to my diagnosis and how much it really is going to change my life. More on that later.

In summary Autistic Burnout is an accumulation of years of trying to appear normal and cope as an Neurotypical (NT). The strain and drain of it suddenly becomes too much and an autistic person (me in this case) falls apart. All autistic symptoms get worse. Trying to manage all the every day normal activities are way too much. It is overwhelming and stressful for the person involved.

This article is an excellent in-depth explanation of Autistic Burnout. The original article is not working unfortunately. 

Wrong Planet has a discussion on Autistic burnout which is also really good.

Here is another forum about Autistic symptoms getting worse during times of stress.

The above picture is from Karla's ASD page on Facebook. I have found her page to be a fantastic source of resources and information about Autism. I highly recommend her page.

So what is the solution to Autistic Burnout?

I need to live my life in a way that suits me and that I can manage. I need to allow myself time to recover, process all the BIG stuff going on in my head. I need to manage my spoons or tokens and work out how many I have per day/week. I need to practice daily self-care which I currently do. I will write more on self-care in another post as I believe it is very important for us Autistics to learn and practice. 
The 'real world' as known by NTs (neurotypicals) is not Autism friendly. It is too fast, too busy, overwhelming, stressful, sensory-overloading for us. We need to create our own world that is Autism friendly and live in a way which suits us.

The above image is from Karla's ASD Page. I will hyperlink to the actual image as what she has to say on the subject of the 'real world' is excellent. 


I will share my actual story of Autistic burnout in another post.