But you seem so self aware? – World Autism Awareness Week

The last few weeks have been difficult. Difficult isn’t really a big enough word to do it justice, but there isn’t really a more fitting word. I have Asperger’s Syndrome. I like certainty, I don’t like change. I love to plan. A few weeks ago I was given a date for an admission to an eating disorder ward. I remembered the guidance I was given in a post diagnostic autism support group –  check when someone gives you a bit of information that they mean what they say, give them some leverage room in case it’s not 100% certain. My exact words were ‘is it 100% certain, I understand if it’s not, I just need to know, because if it changes I won’t be able to cope’. I was told it was 100% certain. This was sadly wrong, the date was changed, it was communicated poorly (in my view) which culminated me being sectioned as I was so distressed there were quite rightly concerns about me keeping myself safe. It could have been communicated in a better way.

I have a family, I have a job and I can communicate with others. This is often used to judge how functional I am as a person. When I explain I need to know the intricate detail of things, need a very clear routine, how hard I find it at times to express my needs and how damaging change can be I don’t think people really ‘get it’ – at least those who aren’t close to me don’t always comprehend. If I had a £1 for how often I am told I have such a good comprehension of my mental health difficulties I’d be able to pay for my own private therapist by now. I was talking to someone today about my hospital admission and how hard I find group work or being with groups of people – as the years have passed I have found ways of forcing myself to cope in these situations (particularly work related ones where I have no choice) but it doesn’t make it any less painful and there is often an emotional fall out at home where I am overwhelmed by the interaction during the day and either retreat into myself or resort to unhelpful coping strategies. Their response was that perhaps the admission could help me address these issues. I can’t see how though, feeling awkward around others, not understanding them, behaving in the appropriate way isn’t something which can just be ‘fixed’ by immersing myself in those things. I have been trying my whole life. I’ve so badly wanted to fit it and do ‘what’s expected of me’ but it never gets any easier. I can’t even cope with large groups of people I know well. I often miss out on things because of this.

I had a failed admission previously to the eating disorder unit, partly due to some of the issues described above. This time round I so desperately want it to work. I’ve spent a lot of time coming up with questions to ask about the detail, the less ambiguity the easier it will be. It’s felt difficult to keep asking similar questions and to keep having to drill down into the detail of things. I’ve had to self advocate for much of the planning which is incredibly draining. Each time I have to ask for clarity on something I feel guilty. I’ve been told that they haven’t had these sort of questions asked before, which compounds the feelings of guilt and shame. I was told they wouldn’t usually tell someone what room they would be in, in advance. I knew it might not be possible to tell me this in advance, so I wasn’t asking for a special adjustment, if the detail was there though I wanted to know it, as I thought it might make me feel more settled. I feel like I am thought of as a ‘difficult patient’ because I keep asking questions, looking for structure and trying to figure out ways of how I will cope. These type of feelings don’t help to keep my mood stable, which results in the inevitable duo of anxiety and depression playing havoc with my life.

Today we talked about leave from the hospital ward. There won’t be any at all for the first two weeks. In principle I can understand this, when someone begins eating more again they can become medically unstable and need close monitoring. There’s also the issue of needing to gain weight, not burn calories and address eating disordered behaviors. The difficulty I am facing is that although I’ve used exercise as a way to burn calories I also use it as a way to cope with feelings of being socially overwhelmed. In my day to day life when I am working I regularly experience these feelings and this is where I am able to isolate myself in the evenings and weekends to cope. Spending 2 weeks in very close proximity with others without the ability to use my winding down mechanisms is almost incomprehensible, I couldn’t do this with my own family. But on the face of it the professionals just see someone who is quite competent, coherent, ‘functional’ and probably just think it’s all part of the eating disorder. It’s a daily frustration that in some ways I can function so well in life but in others I feel emotionally and socially like a lost child, unsure of what to do, where to go, what to say. They probably see me as being demanding, but it’s not that, I just know what helps.

I was interested to read this week that the NAS have produced some training regarding Women and Girls I think this could be hugely beneficial to anyone to undertake, particularly those supporting others. At times it can be mentally draining to keep trying to explain your idiosyncrasies. I do feel lucky that I have the capacity to do this, which I suppose is where the benefit of self awareness does come in. I feel sad for those who can’t do this who may be experiencing treatment which doesn’t fully meet their needs.  As always I’d be interested to hear the thoughts of others in respect of the above, particularly in relation to any coping strategies I can try and apply in hospital.