Speaking out

So a while ago I was in a short documentary on the myths surrounding Asperger Syndrome, and wrote a blog post on that. Today the National Autistic Society (NAS)'s Twitter account, which I've been following for the last few months, put up a link to that documentary online. I'll admit that my initial reaction was "Oh shoot, people I know might see this." Then I thought, why shouldn't they (you?) see it? I'd love for more people to know about Asperger Syndrome - when I write my blog posts here I sometimes hope that people I know will read and learn more about how my condition sometimes affects me. Maybe it feels a bit different in that my blog posts are written text, while the documentary shows me speaking - than again, it always feels awkward watching videos of myself (a universal issue?).

I'm happy to talk about my Asperger's and depression if people ask and genuinely want to know, then again it feels like a bigger step to go and make the first step of starting a discussion about it. Maybe I feel that the documentary is a way of me making that first step, something I have difficulty with in social communication anyway. Then again, I have to push myself - how else am I going to challenge stigma if I don't talk? I'd love to live in a world where we can talk about things like autism and mental health openly without stigma, being someone who speaks out and tries to change our current world into this one is difficult. I think it's something that I have to do, though.

So I'll be brave, and post the link here:
https://vimeo.com/66121269

I'm not sure I'm brave enough to post this elsewhere, though. That's a cowardly thought. I'll put it with the link to my blog on my facebook page, and see if anything comes from that. No, I'll put the link up on my status, and try to hide from the internet for the rest of the evening. It feels like a huge step.

Done. Now to distract myself playing Katawa Shoujo again (I replayed Rin's path yesterday, today I might play Shizune's since I remember that one least well).  

Also, the NAS Twitter page is worth following for finding out more stuff - I feel like I'm advertising here.

Children

Having just finished my undergraduate degree (BSc Hons in Psychology with a 2:1, I shall allow myself to show off here!), I'm wondering what to do with myself next. Not knowing what's coming next is a bit daunting, but I think most graduates feel like this at the moment. In answer to the question of "What next?", my mind is consciously thinking along the lines of further study (I'm waiting to hear back from a postgraduate course in mental health), or finding a job (something mental-health related would be awesome) if that doesn't work out. On the other hand, recently I've somewhat subconsciously become more aware of the presence of babies around me - "Dear goodness no, not yet!" is what my mind has to say to that!

I would love to be a parent one day. Some Aspies I know don't want to have children, but it's something that I've wanted since I was a child. I like to think that I'd be a good parent, but I don't know if having children would be wise.

Mum and I have sometimes talked about how many members of our family have been diagnosed with autism, and how many we believe have some form of it (including Asperger's) without necessarily being diagnosed. Assuming a genetic basis for autism (I won't argue about the possible causes of autism here), based on the instances in my family, a child of mine has a good chance of having some form of autism. While I do worry about how I'd manage a child with autism, my main fear is how they'd cope.

Growing up with Asperger's wasn't at all easy for me. I had few friends, felt left out a lot, and was often scolded for doing or saying something inappropriate which to me made perfect sense at the time. I had difficulty fitting in, and was aware that others had difficulty managing me. I'd wake up in the morning and worry that I'd unintentionally do something wrong to upset someone that day, which often did happen. Learning social skills and cues consciously took a lot of trial and error, and I'd try to adopt certain behaviours to fit in that didn't feel at all natural to me. Academic success didn't make up for the fact that in most other respects, I near-constantly felt like a failure.

Would having a child, knowing that they have a good chance of going through that pain, make me selfish? Why bring somebody into the world if they'd spend years trying and failing to fit into it? While I know that I could adopt a child (I'm not ruling that out at all), there's still the part of me that (instinctively?) wants to pass on my genes and create a new life. The worries about having an autistic child have been in my mind since I was in my mid-teens, and have recently popped up more strongly - while I tell myself that there's no use thinking about it until I plan on having children, which I imagine won't be for many years yet, still I worry.

Shut-down

"It's hard to watch someone you love having a shut-down."

I love reading chapters that start off with a quotation, then explain the story behind it (providing they're written well, that is). Most of my attempts at story-writing (to date I've only finished one story, not including a 9-page story that I wrote when I was 6 about a cat called Colina) have a couple of chapters where a character says something, and the next paragraph or two sum up what led to that statement. This has gone off on a tangent somewhat, I'll get back to my original point.

I was at a buffet with my mum last week, and after finishing dessert I said that I was tempted to get seconds. She started to warn me about eating too much dessert: given that I've recently come off a strict diet regime and still have issues with food (I wonder if I'll ever feel fully in control of what I eat), I took this quite personally. A passing waiter said in Spanish that I could go up for more: Mum translated this for me, even though I understood enough Spanish to know what he said. The combination of feeling hurt about having someone try to control my eating for me and having someone assume that I didn't understand a basic Spanish phrase (this was my thinking at the time, likely this isn't justified by her standards) led to me having a shut-down there and then.

Before I go into talking about my shut-downs, I'd like to point out that I've been told for most of my life that I take things too personally. I'm sure I do by other people's standards, but I don't see how I can help feeling offended by something that hits a raw nerve, even if rationally I can tell myself that there was no malicious intent behind a statement.

It's a bit hard to describe what a shut-down is like. To me, it feels that the world slows down: I become far more aware of my own presence, and the presence of others. Stimuli such as lights and sounds become a lot more intense: if I'm talking to someone and a shut-down happens, my attention is still on them, but other people and objects become just as intense and demanding of attention. Trying to focus on just one thing, namely the person I'm talking to or the task I'm doing, is a lot more difficult with all the extra stimuli taking up my attention. Words that people say to me are taken more personally than they otherwise would be. My thoughts get jumbled since I'm taking in so much information while trying to attend to a task or conversation at the same time. Since the world feels slowed down at that moment, it feels like I'm stuck and can't progress out of that phase.

My behaviour during them has varied over time: my instinctive response would be to indulge in Aspie behaviour like rocking or covering my eyes and ears to block out the world until it's over. I'm tempted to cry or shout to get out my frustration. I want to run away to somewhere away from people, to be alone in a place with few stimuli to take my attention. Since none of these are really appropriate when I'm in a place with people - I often have enough control to not let these instinctive behaviours occur - I go into what my mum calls 'Soldier mode'. My answers and movements become robotic: I either say nothing at all, or my responses are short and snappy, and can be hurtful since I can't really think them out beforehand. Sometimes I can give longer responses which make little sense and I often end up contradicting myself. My body gets tense and I can grip things quite tightly. My voice becomes a monotone. I don't feel that I'm in full control over what I do and say: my 'Soldier' behaviour seems to me (in hindsight) like a defence mechanism, to stop myself from escaping or indulging in Aspie behaviour, while trying to block out the intense stimuli and trying to not show the hurt that a comment has (almost always unintentionally) made me feel.

My shut-downs can last for a fair while: sometimes it's an hour or two (sometimes up to half a day) before I realise that my thoughts are my own again. Things that can help me to come out of them are being on my own, and focusing on just one thing such as reading a book or fixating on a wallpaper pattern. I don't always remember exactly what I say and do just before and during shut-downs, it feels like I'm conscious but not fully aware. I resolve to try harder next time to not let a comment get to me so much, then feel worse for being so sensitive. Usually at this point I apologise to Mum, who's often the one present when a shut-down occurs: she says that after I have a shut-down she feels that she has to walk on eggshells so as to not upset me, which makes me feel worse.

I can see why it hurts her when I have shut-downs. But it hurts me too: it's not as though I'd willingly put myself through them.