Tuesday, 25 June 2013

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 I was spending the day withdrawn (in shutdown) from my son, on my iPhone doing stuff (stimming) on Facebook.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.

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