I like ordering things. Putting things in order, that is. When I first move into a place, I try to force myself to leave unpacking my books until last: otherwise I can spend over an hour sorting them, then changing my mind and re-sorting them. In this house they're sorted according to what they are (fiction, real-life, textbook) and then by author (if I have the time), while at my parents' house they're sorted by height order.
Lately I've been busy with essays: for me this is naturally accompanied with procrastination, unfortunately. At one point I found myself in the kitchen talking to Cat: in our kitchen we have a bowl of magnet-backed words that we put on the fridge to form sentences. While talking I sorted through the bowl of words so that they were all facing up: that was quite soothing, and I felt quite excited when all of the words were facing the same way. I did feel tempted to put them in alphabetical order: that would've taken too much time and space, though.
Just to clarify: I don't get upset when things aren't in order, which is what most fictional portrayals of Aspies seems to show. I just prefer it when they are in order: I think it's a bit like saying that my favourite colour is purple and that I don't object to other colours. Have I mentioned that my room in this house is purple? I do love it.
Wednesday 21 December 2011
Thursday 8 December 2011
I was in a documentary!
If you've read my previous post first, you'll know that there were two things that I wanted to write about. The first is about my final psychologist report: I blogged about that in my previous post. My second thing to blog about is what I'll write about here.
Back in early October (a week or so after I got diagnosed), my mum forwarded me some of the posts on an online mailing list for families of people with autism. A lot of them had studies that people with Asperger's/families of autistic people could take part in: I've done a few of those (they're very mixed, one asked about empathy towards an autistic sibling while another asked about adult fantasies...). One email was from a group in America who were hoping to film people with Asperger's in the UK for a short documentary: I emailed to say that I was interested, and a few weeks later I met up with the filmmaker. We met in a public park near to where I live, in full view of the traffic: while this meant that we had a few issues at the start with the microphone and being able to hear me over the traffic, I much preferred being easily-seen to inviting strangers into my house. I'd been sent a few questions beforehand ('What was school like?', 'How have you felt since diagnosis?' etc), so I was asked those and I answered. Than we just had a conversation about Asperger's and how it affects me in general: I think the idea was to get me to speak as much as possible so that they'd have enough material to try and get soundbites from. It was quite an enjoyable hour-and-a-half: then we packed up, and I cycled back home.
A week ago, I got an email with a consent form attached regarding giving the rights of the video to the producers, so I signed and sent that back.
Then today, I got an email with the completed documentary attached! It's just shy of half an hour long, and there're interviews with a doctor, a support-group worker, a music therapist, and four adults with Asperger's, myself included. I've just finished watching it, it's quite a well-made documentary, and I don't think I sound too foolish on camera (although I somewhat hope my voice doesn't really sound like that, it sounds far too posh!). The filmmaker said in the email that it was screened on 3rd of December 2011 at a conference in America, and that he'd been told it was "...well received, and the participants acted as wonderful advocates to help more people know about Asperger's disorder. They made a very positive impact." So I'm quite pleased with that! If the video ever becomes available on the net then I'll link it: however given that I don't have any rights to it, it can happily stay on my computer. Still, some people saw me speak about life as an Aspie, and hopefully a bit more understanding will come about as a result of that documentary to the few who watched it: that's good enough for me at this stage!
Back in early October (a week or so after I got diagnosed), my mum forwarded me some of the posts on an online mailing list for families of people with autism. A lot of them had studies that people with Asperger's/families of autistic people could take part in: I've done a few of those (they're very mixed, one asked about empathy towards an autistic sibling while another asked about adult fantasies...). One email was from a group in America who were hoping to film people with Asperger's in the UK for a short documentary: I emailed to say that I was interested, and a few weeks later I met up with the filmmaker. We met in a public park near to where I live, in full view of the traffic: while this meant that we had a few issues at the start with the microphone and being able to hear me over the traffic, I much preferred being easily-seen to inviting strangers into my house. I'd been sent a few questions beforehand ('What was school like?', 'How have you felt since diagnosis?' etc), so I was asked those and I answered. Than we just had a conversation about Asperger's and how it affects me in general: I think the idea was to get me to speak as much as possible so that they'd have enough material to try and get soundbites from. It was quite an enjoyable hour-and-a-half: then we packed up, and I cycled back home.
A week ago, I got an email with a consent form attached regarding giving the rights of the video to the producers, so I signed and sent that back.
Then today, I got an email with the completed documentary attached! It's just shy of half an hour long, and there're interviews with a doctor, a support-group worker, a music therapist, and four adults with Asperger's, myself included. I've just finished watching it, it's quite a well-made documentary, and I don't think I sound too foolish on camera (although I somewhat hope my voice doesn't really sound like that, it sounds far too posh!). The filmmaker said in the email that it was screened on 3rd of December 2011 at a conference in America, and that he'd been told it was "...well received, and the participants acted as wonderful advocates to help more people know about Asperger's disorder. They made a very positive impact." So I'm quite pleased with that! If the video ever becomes available on the net then I'll link it: however given that I don't have any rights to it, it can happily stay on my computer. Still, some people saw me speak about life as an Aspie, and hopefully a bit more understanding will come about as a result of that documentary to the few who watched it: that's good enough for me at this stage!
Final Asperger's report
Hopefully my lack of blogging in November will be redeemed, since there are now two main things to blog about!
The first thing to write about is the final report that the psychologist gave me. There's the report in full, and also a letter to give to potential employers/lecturers/services etc. The letter says (I'll summarise since it's two pages long) that I have Asperger's Syndrome, and the first page talks mainly about what Asperger's is and how it can affect people. The second page talks more about issues affecting people with Asperger's, and ends with a paragraph talking about how Asperger's affects me personally. It says that I am "extremely intelligent" and "able to 'learn' the things that neuro-typical people take for granted". To clarify, a 'neurotypical' person is one without Asperger's. It can be shortened to 'NT' - on a board I saw somebody ask if NT stood for 'Non-tistic', I quite like that term! Cat pointed out that by using that definition, people with other conditions affecting their nervous systems would be classified as neurotypical, but I digress. The paragraph goes on to say that it would be helpful for me to feel comfortable while working if coworkers could make appropriate allowances such as avoiding metaphors (I think I'd mostly be okay at this, though), avoiding ambiguous language and teasing (teasing with friends is one thing that I'm still adapting to: teasing in the workplace would be far worse). It says that I wouldn't enjoy office banter or small talk - I agree that while working I'd not enjoy these at all, but perhaps during lunch breaks I'd be okay. Still, it's easier to get people to start doing something, than to stop, in this case. Methinks. It talks about how if people with Asperger's do not feel understood, they can be prone to anxiety which can lead to mental health problems; but that "...with the right support and encouragement, people with Asperger's syndrome can lead full and independent lives and become a valued member of any workforce."
So I'll take that with me when I start job-searching. I intend to stay in uni for at least another year doing postgraduate study though, so perhaps I won't need this letter for a while.
Then there's the report itself: it's largely the same, but with a few differences with regard to the comments I sent the psychologist in response to the draft. I'm sitting on my bed with the draft and full reports in front of me, listening to the Katawa Shoujo soundtrack (the 'Painful Memories' theme is my favourite, I have that on loop at the moment), so I'll go through and compare.
"She can struggle to know when family members and colleagues are trying to give her helpful advice and can become angry and defensive – often feeling that people are picking on her": this has been amended to read "She can struggle to know when family members and colleagues are trying to give her helpful advice and can become quite sad, sometimes withdrawing into herself and saying very little if she feels that people are picking on her".
I think that that's more accurate.
"Catherine stated that she would become very angry if she had planned and activity and it was suddenly cancelled": this has become "Catherine stated that she would become upset, troubled and stressed if she had planned an activity and it was suddenly cancelled."
Firstly, I'm glad that she amended the typing error on 'and'. I also feel that the amended statement is more accurate: my parents and I agree that I'm not an angry person!
"If she was on her own, she would probably eat the same food every day": this has become "Catherine stated that she would prefer to eat the same thing every day, if she were not aware of how damaging that could be to her health in terms of lack of nutrition. When she is on her own, she tries to get the food groups relatively balanced, even though it is not what she would necessarily prefer to do."
I do try and eat a mix of things: sometimes though, I am just lazy and nutrition goes out of the window. Hopefully when term ends, I'll have more time to re-think my eating habits and plan meals, rather than eating whatever's in the fridge at that time.
"It may help others to understand Catherine better if she was able to explain need for personal distance and minimal touching": this has become "It may help others to understand Catherine better if those around her could understand her issues around touch. Catherine loves hugs and pats on the shoulder if she is expecting them. However, when a nurse shook her shoulders during a recent examination, it caught her by surprise, and she disliked it. When friends hug her, or other casual contact occurs when she is relaxed, she likes it. So for her minimal touching is not the issue - but touching without letting her know first can startle her if she is already stressed."
It's quite a big change, but a vital one I feel: a life without touch would sadden me greatly. I originally mistyped 'surprise' as 'sirprise' while writing this - I like the idea of Sir Prise! I digress.
...and I think those are the only changes. Mum and Dad have sent off the cheque to pay for the assessment, and I have a diagnosis. Result!
I took the report, 'employer letter', and a letter from my GP regarding my depression to disability services at university, so now my record is more up-to-date. I've applied for DSA (Disabled Students' Allowance), I think that they'll get in touch with me soon to assess me and see what support (if any) they can give me.
Hmm, I said that there were two main things that I wanted to write about. I'll write a second blog post for the other thing. Although the way that Blogger works, people would most likely read that one before reading this post. Hmm, that could be confusing. Ah well, I'll write the next blog post and see how it works out.
The first thing to write about is the final report that the psychologist gave me. There's the report in full, and also a letter to give to potential employers/lecturers/services etc. The letter says (I'll summarise since it's two pages long) that I have Asperger's Syndrome, and the first page talks mainly about what Asperger's is and how it can affect people. The second page talks more about issues affecting people with Asperger's, and ends with a paragraph talking about how Asperger's affects me personally. It says that I am "extremely intelligent" and "able to 'learn' the things that neuro-typical people take for granted". To clarify, a 'neurotypical' person is one without Asperger's. It can be shortened to 'NT' - on a board I saw somebody ask if NT stood for 'Non-tistic', I quite like that term! Cat pointed out that by using that definition, people with other conditions affecting their nervous systems would be classified as neurotypical, but I digress. The paragraph goes on to say that it would be helpful for me to feel comfortable while working if coworkers could make appropriate allowances such as avoiding metaphors (I think I'd mostly be okay at this, though), avoiding ambiguous language and teasing (teasing with friends is one thing that I'm still adapting to: teasing in the workplace would be far worse). It says that I wouldn't enjoy office banter or small talk - I agree that while working I'd not enjoy these at all, but perhaps during lunch breaks I'd be okay. Still, it's easier to get people to start doing something, than to stop, in this case. Methinks. It talks about how if people with Asperger's do not feel understood, they can be prone to anxiety which can lead to mental health problems; but that "...with the right support and encouragement, people with Asperger's syndrome can lead full and independent lives and become a valued member of any workforce."
So I'll take that with me when I start job-searching. I intend to stay in uni for at least another year doing postgraduate study though, so perhaps I won't need this letter for a while.
Then there's the report itself: it's largely the same, but with a few differences with regard to the comments I sent the psychologist in response to the draft. I'm sitting on my bed with the draft and full reports in front of me, listening to the Katawa Shoujo soundtrack (the 'Painful Memories' theme is my favourite, I have that on loop at the moment), so I'll go through and compare.
"She can struggle to know when family members and colleagues are trying to give her helpful advice and can become angry and defensive – often feeling that people are picking on her": this has been amended to read "She can struggle to know when family members and colleagues are trying to give her helpful advice and can become quite sad, sometimes withdrawing into herself and saying very little if she feels that people are picking on her".
I think that that's more accurate.
"Catherine stated that she would become very angry if she had planned and activity and it was suddenly cancelled": this has become "Catherine stated that she would become upset, troubled and stressed if she had planned an activity and it was suddenly cancelled."
Firstly, I'm glad that she amended the typing error on 'and'. I also feel that the amended statement is more accurate: my parents and I agree that I'm not an angry person!
"If she was on her own, she would probably eat the same food every day": this has become "Catherine stated that she would prefer to eat the same thing every day, if she were not aware of how damaging that could be to her health in terms of lack of nutrition. When she is on her own, she tries to get the food groups relatively balanced, even though it is not what she would necessarily prefer to do."
I do try and eat a mix of things: sometimes though, I am just lazy and nutrition goes out of the window. Hopefully when term ends, I'll have more time to re-think my eating habits and plan meals, rather than eating whatever's in the fridge at that time.
"It may help others to understand Catherine better if she was able to explain need for personal distance and minimal touching": this has become "It may help others to understand Catherine better if those around her could understand her issues around touch. Catherine loves hugs and pats on the shoulder if she is expecting them. However, when a nurse shook her shoulders during a recent examination, it caught her by surprise, and she disliked it. When friends hug her, or other casual contact occurs when she is relaxed, she likes it. So for her minimal touching is not the issue - but touching without letting her know first can startle her if she is already stressed."
It's quite a big change, but a vital one I feel: a life without touch would sadden me greatly. I originally mistyped 'surprise' as 'sirprise' while writing this - I like the idea of Sir Prise! I digress.
...and I think those are the only changes. Mum and Dad have sent off the cheque to pay for the assessment, and I have a diagnosis. Result!
I took the report, 'employer letter', and a letter from my GP regarding my depression to disability services at university, so now my record is more up-to-date. I've applied for DSA (Disabled Students' Allowance), I think that they'll get in touch with me soon to assess me and see what support (if any) they can give me.
Hmm, I said that there were two main things that I wanted to write about. I'll write a second blog post for the other thing. Although the way that Blogger works, people would most likely read that one before reading this post. Hmm, that could be confusing. Ah well, I'll write the next blog post and see how it works out.
Saturday 3 December 2011
Diagnosis added to notes
The psychologist's final report came through yesterday! I'm very happy about this, since a) it's there in black and white that I'm an Aspie, b) I can show it to potential employers/uni administrators/etc as evidence, and c) I can apply for Disabled Student's Allowance. I wanted the report most for reason a), but it could come in useful for b) and c). The psychologist had amended it so that it included the modifications I sent (most of which I mentioned in an earlier blog post) - I'd write about those more in detail, but I'm in the Chaplaincy on campus and the report is on my desk in my house. I'll try and write another blog post about the updated report sometime soon.
After meeting with the GP, I got my diagnosis of Asperger's added to my case notes - I'm glad about that. Hopefully that'll be taken into account when treating me for whatever illnesses I may get in future - having my shoulders shaken 'reassuringly' by a nurse isn't something that I'd like to go through again! I haven't yet phoned the clinic whose waiting list I'm on for an assessment to take me off their list - I asked the doctor for their number, but by the end of the appointment we'd both forgotten.
I spoke to disability services and they've agreed to give me one-to-one essay guidance since I'm not good at expressing myself through words (I'm better at this in writing than when speaking, but it's still a problem area). I also get a bit of extra time in exams to account for this, and I can take my exams in a room in the psychology department with a few other people rather than with everyone else - I'm glad of this, since being in a large room with many other people can be a bit daunting. I was offered a room on my own for my exams - that idea scared me more than the thought of being in a large room with lots of people, to be honest!
I feel that I should write something more, given that it's been a long time since my last blog post...
Last night I sang in a concert with the rock-gospel choir, and while that was good fun it was a bit uncomfortable at times - we the choir were packed together tightly and I didn't like being touched just then; the noise was so loud to me that my left ear physically hurt; and when I saw that my violin wasn't in the exact place that I'd left it during the rehearsal, that stressed me out a fair bit. I was almost glad when the end came and I had a bus journey by myself in which to unwind, fun though the concert was.
What else...
At the moment I'm waiting for turkey to cook - Maddy and I plus helpers are preparing a Christmas meal for our society tomorrow. That should be great fun! At the moment I'm quite calm about it, although I imagine that when there's lots going on I'll get more bothered. Then again, I was relatively calm during a mini-fiasco last weekend (we the society went to Gloucester on a minibus for the weekend - the person looking after the minibus keys left a few hours early to go London and took the keys with him, so we had to sort out getting the keys back to us in Gloucester via coach and sorting out the ensuing chaos and arguments), so you never know.
Hmm, the frozen milk is defrosting on the table, and each time I type the table moves slightly and the water under the milk moves slightly. I could only see it out of the corner of my eye, it looked a bit like sparkles and I wondered if I was seeing stars. That confused me briefly, since I'm not dizzy and haven't hit my head. I'm glad that it's just water and not stars.
After meeting with the GP, I got my diagnosis of Asperger's added to my case notes - I'm glad about that. Hopefully that'll be taken into account when treating me for whatever illnesses I may get in future - having my shoulders shaken 'reassuringly' by a nurse isn't something that I'd like to go through again! I haven't yet phoned the clinic whose waiting list I'm on for an assessment to take me off their list - I asked the doctor for their number, but by the end of the appointment we'd both forgotten.
I spoke to disability services and they've agreed to give me one-to-one essay guidance since I'm not good at expressing myself through words (I'm better at this in writing than when speaking, but it's still a problem area). I also get a bit of extra time in exams to account for this, and I can take my exams in a room in the psychology department with a few other people rather than with everyone else - I'm glad of this, since being in a large room with many other people can be a bit daunting. I was offered a room on my own for my exams - that idea scared me more than the thought of being in a large room with lots of people, to be honest!
I feel that I should write something more, given that it's been a long time since my last blog post...
Last night I sang in a concert with the rock-gospel choir, and while that was good fun it was a bit uncomfortable at times - we the choir were packed together tightly and I didn't like being touched just then; the noise was so loud to me that my left ear physically hurt; and when I saw that my violin wasn't in the exact place that I'd left it during the rehearsal, that stressed me out a fair bit. I was almost glad when the end came and I had a bus journey by myself in which to unwind, fun though the concert was.
What else...
At the moment I'm waiting for turkey to cook - Maddy and I plus helpers are preparing a Christmas meal for our society tomorrow. That should be great fun! At the moment I'm quite calm about it, although I imagine that when there's lots going on I'll get more bothered. Then again, I was relatively calm during a mini-fiasco last weekend (we the society went to Gloucester on a minibus for the weekend - the person looking after the minibus keys left a few hours early to go London and took the keys with him, so we had to sort out getting the keys back to us in Gloucester via coach and sorting out the ensuing chaos and arguments), so you never know.
Hmm, the frozen milk is defrosting on the table, and each time I type the table moves slightly and the water under the milk moves slightly. I could only see it out of the corner of my eye, it looked a bit like sparkles and I wondered if I was seeing stars. That confused me briefly, since I'm not dizzy and haven't hit my head. I'm glad that it's just water and not stars.
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