Tuesday 23 August 2011

Others' blogs reassure me

Just a small note here.

I like to read other (am I entitled to use that word in this context?) Aspies' blogs, especially those of women, to see if any are like me. It's comforting that some of them are quite similar: while some bloggers are like the typical film-portrayed Aspie, others are able to function adequately in the world and apparently don't immediately come across as strange.

What particularly reassures me is that some bloggers have families: they have a partner, and some have children. I'd love a partner and children one day: to those who say that being Aspie means that you can't love others and find relationships too much hassle, that's a generalisation. For one thing, if all Aspies didn't have relationships, I wouldn't exist! Anyway, reading their stories of being married and parenting, and of the joys and struggles that they sometimes face, gives me hope that one day I'll be like that.

Friday 19 August 2011

Why I want a diagnosis

So far I've had replies from three private assessors: one nearish my university charges £600 and has a free slot in October; one near my parents charges £900 but has just offered to reduce it slightly since I've been assessed before as a child; and one closer to uni charges £300, but I've heard negative things about her from WrongPlanet posters, so I'm disregarding her. I've emailed the person who lives near us to see what she means by a 'reduced cost', depending on that we'll see where I go from here.

I have a bit of time now - I'm staying with Jen-Steve-James-Mark for a few days, and I'm locked in the house until James reappears with keys - so I'll write a bit about what my thoughts are regarding diagnosis.

Let's go back to when I was 14 or so, and found the papers about my assessment as a toddler. I wrote down my thoughts and feelings on that in my diary (I kept one regularly from age 13 to 17) - I'll have a quick look through my diary now and see if I can find anything useful.

...At the moment I only have diaries 1-5 on hand and I can't find any relevant entries in there, I'll have another look when I'm back home.

Anyway, from what I remember, my feelings at the time were that I didn't want to have Asperger's: that would make me like Dad, who had some difficulties at the time. I wanted to be normal - but I think I knew that I wasn't completely normal. This stays in the back of my mind until I'm maybe 17 or so, and Mum and I discuss the fact that I was assessed before, and how the assessments stopped when my brother started showing autistic signs. I was upset that this wasn't pursued, more because I thought that if I'd been diagnosed, I could have developed to be more intelligent, even if it meant being less socially able. Then I start university and think more about assessment, in particular during the summer before my second year.

I've been asked a few times why I want a diagnosis. I've been given suggestions as to why I want one: to fit in with the family, to get help, to access disability living allowance. It annoys me when people have said to me that they know why I want a diagnosis. They're not me, how can they presume to have my thoughts?

So, my thoughts are these. I have trouble functioning socially, and sometimes what makes sense to me doesn't make sense to other people, and vice versa. I live in a university bubble where my friends are accepting of who I am without much question: however, the world as a whole isn't like this. I can camouflage, but not always fit in perfectly. I don't want to camouflage anymore: I want to be myself. In order to fit in, I have to change or hide bits of myself (see my first entry on my traits): I don't want to do this any more. I want to be accepted for who I am, not for who society says I should be.

If I get a diagnosis of Asperger's, that'll a) confirm that I'm weird for a reason rather than as a result of failing to adapt, which will b) hopefully boost my morale somewhat (I sometimes feel that it's my fault that I can't always function well, which makes me feel more depressed). Also, c) if people think 'oh, she has Asperger's' rather than 'oh, she's rude and slow on the uptake', hopefully they'll be more understanding, less likely to avoid me, and - dare I write this? - willing to change the way they say things to me in order to make it easier for me to understand. For example, I can't process verbal instructions very well, so when Mum goes out and wants me to do something she'll write things down in precise detail - this makes things so much easier. Some people have suggested that I get a diagnosis to access help: most of the time I don't think that I need help, though. My social skills aren't great, but I've worked hard on them and am managing. I can function well in daily life - if nobody makes assumptions. For example, if you ask me to wash the jumper (I've no idea why this example comes to mind), I won't know if you mean the one I'm wearing, or the one you let me borrow, or an unused one on the shelf. And do you mean to handwash it, or to wash it on its own, or to add it to the laundry? And then do you want me to hang it, or leave it there? If you assume that I know exactly what you're talking about, things don't always work out well. So maybe some more help in this area - although I'm not sure what such help would involve, mind-reading courses??? - would be good.

I'll leave it at that for the moment. To summarise, I want a diagnosis because then I think I'd feel free to be me, Catherine, rather than a failed weird person.

Saturday 13 August 2011

Seeking a diagnosis?

I've been on the waiting list for an assessment for Asperger's for a few months (my GP referred me in April): today I received a letter from my local psychological services saying that due to my need for a specialist assessment, I'd most likely have to wait until 2012 for an appointment. In the meantime they gave me the Autism Quotient and Cambridge Behaviour Scale to fill in. What amused me was that the Autism Quotient questionnaire had 50 sets of answers (i.e. 'Strongly agree-Slightly Agree-Slightly Disagree-Strongly Disagree' was printed on one side of the page 50 times), however only the first eight questions were printed: next to the other 42 answer-sets was blank space. My response was to write in the questions myself, then criticise the wording of three of the questions (I can't recall right now which these were).

Anyway, I filled those both in and sent them off - but now I'm unsure what to do. I told Mum when she asked who the post was from (they came in a handwritten envelope - they'd originally arrived at my uni-house, and I asked one of my now-former housemates to forward it to me at my
parents'), and she suggested that I look into getting a private diagnosis if I'd have to wait so long. She gave me the email of somebody recommended by one of her friends- I did get in touch, however the response was that a complete assessment would cost £900 or so, while a shorter one would cost £600. Hmm. I had a conversation about this with Cat, which was both helpful and left me more confused, if that makes sense. I put a post about this on WrongPlanet, one reply suggested that I get in touch with the NAS and ask about other assessment centres, in the hope that they may have shorter waiting lists. I've now done this, and I've also asked about private assessors: I imagine that since it's the weekend I won't get a reply until at least Monday, and given that we're in August I might not get a reply for a while longer.

Mum did ask me why it was important to me to get a diagnosis: Cat asked me this at one point as well. I can't remember if I've written about this on my blog or not, but at the moment I'm feeling rather tired (it's 1.26am) and I'd rather wait until I'm more awake to go into the reasons (or is there just one reason? Unsure.).