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.
Sunday, 23 October 2011
Wheel-that-spins
The last four days or so have been particularly busy and stressful for me, due to a combination of heavy university work and volunteering commitments. Since I hadn't had a day-off for a few weeks, I felt the strain more than I usually do: consequently, yesterday afternoon and evening I showed some of my traits. I had trouble keeping eye contact with people, and stood by myself a few times even though I was with a group on an outing. In the evening I jerky-slapped a few times and covered my ears for a few minutes when the heating turned itself on: the sound bothered me much more than usual then.
We have a toy hamster in our house: Dad bought it for me in the market one day, saying that he felt that I needed a pet at uni. Consequently the hamster, Susie, lives in a hamster wheel on the kitchen table, and by turning on a switch, she 'runs' on the hamster wheel using small wheels in the place of paws.
The point of that story is that my stress levels got quite high, and I ended up at the kitchen table spinning the wheel with my finger (Susie was on the table). It wasn't an absent-minded spinning, it was something I really focused on: hardly anything mattered but keeping this wheel spinning. It made me feel a bit more content, if not much less stressed. I don't really know how best to describe how wonderful spinning an object (sometimes including myself) can make me feel: in a way it feels good that there is something constant, unchanging, and that I have the power to make it stay spinning at the same speed. Spinning objects is something that nowadays I tend to do only when I'm very stressed: on occasion I'll indulge myself to take a few moments to spin a pen on the table. Maybe it helps because there's only one thing to focus on, whereas when I'm tired and stressed I feel overwhelmed by seeing and hearing so many things at once in the world around me.
It was at this point that Cat persuaded me to go to bed and get some sleep. I felt better today, but still had to take a few minutes to myself from a group lunch: admittedly most of the people I'd never met before, which is always daunting and draining for me. Still, I'm feeling a lot better now, although I think a good night's sleep is in order!
We have a toy hamster in our house: Dad bought it for me in the market one day, saying that he felt that I needed a pet at uni. Consequently the hamster, Susie, lives in a hamster wheel on the kitchen table, and by turning on a switch, she 'runs' on the hamster wheel using small wheels in the place of paws.
The point of that story is that my stress levels got quite high, and I ended up at the kitchen table spinning the wheel with my finger (Susie was on the table). It wasn't an absent-minded spinning, it was something I really focused on: hardly anything mattered but keeping this wheel spinning. It made me feel a bit more content, if not much less stressed. I don't really know how best to describe how wonderful spinning an object (sometimes including myself) can make me feel: in a way it feels good that there is something constant, unchanging, and that I have the power to make it stay spinning at the same speed. Spinning objects is something that nowadays I tend to do only when I'm very stressed: on occasion I'll indulge myself to take a few moments to spin a pen on the table. Maybe it helps because there's only one thing to focus on, whereas when I'm tired and stressed I feel overwhelmed by seeing and hearing so many things at once in the world around me.
It was at this point that Cat persuaded me to go to bed and get some sleep. I felt better today, but still had to take a few minutes to myself from a group lunch: admittedly most of the people I'd never met before, which is always daunting and draining for me. Still, I'm feeling a lot better now, although I think a good night's sleep is in order!
Monday, 17 October 2011
Waiting for Draft 2
I got a reply from the psychologist, thanking me for the comments on her first draft of the assessment, and saying that she'd send me the next draft as soon as she could. I was hoping that this would be done sooner, mainly so that I could have evidence when telling my personal tutor that I have Asperger's. I've arranged to see him tomorrow to talk about module options for this year (I'd ideally like to do 5 this term and 1 next term whereas the usual balance is 3-3 or sometimes 4-2, so I'll run my thoughts past him and see what he thinks), and I'll mention as well about my Asperger's. I think it's important to know. That said, when I told him about my depression, he said that he wouldn't make a note of it, although I could apply for an extension on coursework if need be. I almost applied for one at the end of my first term in second year - I was feeling down and stressed about some things that I don't want to go into on this blog - but my stubbornness meant that I tried to get all the work done without an extension. I did manage, but my work did suffer, so I should be less stubborn in future and recognise my limits.
I went off on a tangent just then - I'll leave it in though, even though it doesn't relate to what I aimed to say in this post.
Hopefully the revised report will come soon.
I went off on a tangent just then - I'll leave it in though, even though it doesn't relate to what I aimed to say in this post.
Hopefully the revised report will come soon.
Monday, 10 October 2011
Draft report of the assessment
I had my assessment last Saturday: yesterday I was sent a draft copy of my report by the psychologist. I read it fairly quickly then (I was visiting my parents at the time and didn't really have the time to sit down and read it carefully), and today I had a closer look. Overall it seems accurate enough: I won't copy and paste the whole thing, but I'll highlight bits and pieces that matter most to me.
"Catherine reports that she does not find it easy to join in with a conversation and can struggle to follow the flow, especially if she is in a noisy environment. She feels that she is not good at making ‘small talk’."
I think I've mentioned before in this blog that I have trouble starting conversations - apologies to anyone who feels that they always have to be the one to start talking. And in loud places such as the pub, or just when there're lots of conversations going on around me - I'll admit that sometimes I lose track of what's being said.
"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. She often perceives advice as criticism."
I think that this is one of my greatest flaws. I truly am sorry to anyone who's been offended (and rightly so) by my response to what I later recognise as advice. I'm too proud in some respects to accept that others know better than me what I should do.
"Currently Catherine enjoys playing the Sims on her computer and can sometimes become absorbed in a game for long periods of time."
'Long periods of time' can go up to a few hours - sometimes half a day has gone by without me realising it. Sometimes people come to talk to me when I'm gaming/reading and if I'm truly absorbed I just won't notice they're there. It happens less often now than when I was a child or teen, which I see as a mixed blessing: on the one hand I'm more in the 'real world' and am aware of what's happening around me, on the other hand it takes more conscious concentration to focus on said book or game.
"Catherine stated that she would become very angry if she had planned and activity and it was suddenly cancelled."
I'm glad that this is only a draft: my parents and I agreed that I do not get angry when plans change. Also, typing error on 'and'. Anyway, Mum said that I get upset when plans change, Dad said stressed; I'd go more for 'troubled'. But not angry: I certainly like to think that I'm not an angry person!
"If she was on her own, she would probably eat the same food every day."
Yet another thing that I'd rephrase: I would eat the same thing every day, if I weren't aware of how damaging that could be to my health in terms of lack of nutrition. When I am on my own, I try to get the food groups relatively balanced.
"Catherine should take extra care drinking hot liquids and should set water temperature lower to avoid the sensation of being too hot in the bath or shower. She should ensure that pathways are clear of objects that could be tripped over. "
Common sense, much?
"She should make notes and use highlighter pens and ask for verbal information to be provided in written form."
Mum often gives me a to-do list in written form: if somebody tells me to do something and I don't have written instructions, chances are I'll either make a mistake somewhere, or forget entirely. So this is useful for others to know, when there's more than one thing to do. I don't need a written to-do list for every small thing!
"Using a bath mitt, loofah sponge or textured flannel may help to become more accustomed to different sensory experiences, as can having a deep pressure massage."
Can I just say, this sounds like my idea of torture. I'm not so sensitive that I can't be touched and hugged, so why do I need to put myself through this?
"Catherine may find that a rocking chair could prove calming."
Rocking chairs are amazing. I can rock without one, though - although I only tend to do that when I'm certain that I'm on my own.
"Catherine should endeavour to incorporate breaks and time-out into her daily routine. In group discussions she may find answering questions helps to maintain focus."
I would also find that answering questions puts the focus of a group on me, which I tend to dislike.
"It may help others to understand Catherine better if she was able to explain need for personal distance and minimal touching."
See, if I tell people that, I fear that I won't be touched at all. And I'd hate that. I love hugs, and pats on the shoulder etc - if I expect them. When a nurse 'reassuringly' shook my shoulders during an appointment regarding my asthma this summer, it caught me by surprise, and I disliked it. When friends hug me, or (thinking how to phrase this in a non-dodgy way) other casual contact occurs, I like it. So for me, minimal touching isn't the issue - but touching without letting me know first is.
"Finally, it is important to acknowledge and accept Catherine’s need for time alone away from the crowd."
If you can think of a socially-acceptable way of escaping from a crowd for a while, please do let me know!
"At times during the Vocabulary sub-test, it seemed as if Catherine knew what a word meant but struggled to find the words to describe it. She is aware of this word-finding difficulty in her day to day life."
In a way it's as though the words are hidden away, and I have to search to find them, even though I understand word meanings fairly well. Imagine I ask you to describe an apple: in your mind you probably picture the fruit, then describe it with words. I sometimes have trouble finding the words that relate to the picture, if that makes sense.
"After careful consideration of all of the evidence gathered and following discussion with Catherine and her parents, it appears that she does have significant difficulties in the areas of social communication, social interaction and flexibility of thought and would, therefore, meet ICD10 criteria for a diagnosis of Asperger’s Syndrome."
Result!
"However, it is important to note, that in common with many young women with this type of difficulty, Catherine has learned how to behave in a socially appropriate manner and her difficulties are unlikely to be immediately apparent."
Another mixed blessing: I function and adapt well enough, but that can make my faux pas seem unexpected and uncalled for.
There was more to the report than what I've just written about, but these were the more important bits for me. At some point in the next few days I'll write back to the psychologist saying what I think could do with changing (anger at change of plans; same meals; minimal touch). For now, I'll finish the chapter of the book I'm reading ('Sensation and Perception': it's one of our course books) then head to bed.
"Catherine reports that she does not find it easy to join in with a conversation and can struggle to follow the flow, especially if she is in a noisy environment. She feels that she is not good at making ‘small talk’."
I think I've mentioned before in this blog that I have trouble starting conversations - apologies to anyone who feels that they always have to be the one to start talking. And in loud places such as the pub, or just when there're lots of conversations going on around me - I'll admit that sometimes I lose track of what's being said.
"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. She often perceives advice as criticism."
I think that this is one of my greatest flaws. I truly am sorry to anyone who's been offended (and rightly so) by my response to what I later recognise as advice. I'm too proud in some respects to accept that others know better than me what I should do.
"Currently Catherine enjoys playing the Sims on her computer and can sometimes become absorbed in a game for long periods of time."
'Long periods of time' can go up to a few hours - sometimes half a day has gone by without me realising it. Sometimes people come to talk to me when I'm gaming/reading and if I'm truly absorbed I just won't notice they're there. It happens less often now than when I was a child or teen, which I see as a mixed blessing: on the one hand I'm more in the 'real world' and am aware of what's happening around me, on the other hand it takes more conscious concentration to focus on said book or game.
"Catherine stated that she would become very angry if she had planned and activity and it was suddenly cancelled."
I'm glad that this is only a draft: my parents and I agreed that I do not get angry when plans change. Also, typing error on 'and'. Anyway, Mum said that I get upset when plans change, Dad said stressed; I'd go more for 'troubled'. But not angry: I certainly like to think that I'm not an angry person!
"If she was on her own, she would probably eat the same food every day."
Yet another thing that I'd rephrase: I would eat the same thing every day, if I weren't aware of how damaging that could be to my health in terms of lack of nutrition. When I am on my own, I try to get the food groups relatively balanced.
"Catherine should take extra care drinking hot liquids and should set water temperature lower to avoid the sensation of being too hot in the bath or shower. She should ensure that pathways are clear of objects that could be tripped over. "
Common sense, much?
"She should make notes and use highlighter pens and ask for verbal information to be provided in written form."
Mum often gives me a to-do list in written form: if somebody tells me to do something and I don't have written instructions, chances are I'll either make a mistake somewhere, or forget entirely. So this is useful for others to know, when there's more than one thing to do. I don't need a written to-do list for every small thing!
"Using a bath mitt, loofah sponge or textured flannel may help to become more accustomed to different sensory experiences, as can having a deep pressure massage."
Can I just say, this sounds like my idea of torture. I'm not so sensitive that I can't be touched and hugged, so why do I need to put myself through this?
"Catherine may find that a rocking chair could prove calming."
Rocking chairs are amazing. I can rock without one, though - although I only tend to do that when I'm certain that I'm on my own.
"Catherine should endeavour to incorporate breaks and time-out into her daily routine. In group discussions she may find answering questions helps to maintain focus."
I would also find that answering questions puts the focus of a group on me, which I tend to dislike.
"It may help others to understand Catherine better if she was able to explain need for personal distance and minimal touching."
See, if I tell people that, I fear that I won't be touched at all. And I'd hate that. I love hugs, and pats on the shoulder etc - if I expect them. When a nurse 'reassuringly' shook my shoulders during an appointment regarding my asthma this summer, it caught me by surprise, and I disliked it. When friends hug me, or (thinking how to phrase this in a non-dodgy way) other casual contact occurs, I like it. So for me, minimal touching isn't the issue - but touching without letting me know first is.
"Finally, it is important to acknowledge and accept Catherine’s need for time alone away from the crowd."
If you can think of a socially-acceptable way of escaping from a crowd for a while, please do let me know!
"At times during the Vocabulary sub-test, it seemed as if Catherine knew what a word meant but struggled to find the words to describe it. She is aware of this word-finding difficulty in her day to day life."
In a way it's as though the words are hidden away, and I have to search to find them, even though I understand word meanings fairly well. Imagine I ask you to describe an apple: in your mind you probably picture the fruit, then describe it with words. I sometimes have trouble finding the words that relate to the picture, if that makes sense.
"After careful consideration of all of the evidence gathered and following discussion with Catherine and her parents, it appears that she does have significant difficulties in the areas of social communication, social interaction and flexibility of thought and would, therefore, meet ICD10 criteria for a diagnosis of Asperger’s Syndrome."
Result!
"However, it is important to note, that in common with many young women with this type of difficulty, Catherine has learned how to behave in a socially appropriate manner and her difficulties are unlikely to be immediately apparent."
Another mixed blessing: I function and adapt well enough, but that can make my faux pas seem unexpected and uncalled for.
There was more to the report than what I've just written about, but these were the more important bits for me. At some point in the next few days I'll write back to the psychologist saying what I think could do with changing (anger at change of plans; same meals; minimal touch). For now, I'll finish the chapter of the book I'm reading ('Sensation and Perception': it's one of our course books) then head to bed.
Saturday, 1 October 2011
The Assessment
Today was assessment day!
...I'm not sure why I wrote that in such an enthusiastic way. Up until this morning I was having second thoughts about going for the assessment - I went to bed fairly early last night, couldn't sleep, went back downstairs to talk to Cat about my worries about being assessed, then went back to bed and had a very restless night. Finally it was morning: I aimed to leave the house at 8.30am to be there for my 10am appointment, so I got up at 8, had breakfast, then chatted to Cat for a bit before leaving at 8.40. I hopped on a bus, mistakenly got off one stop too early, but still arrived with about 25 minutes to spare. So I kept walking, then turned back and went into the centre 10 minutes early.
The psychologist met me at reception when I entered (I was surprised that I didn't have to wait at all), and once I'd signed in and had been offered tea, we went to a small conference room. There she asked me if I was feeling nervous at all, I truthfully said that I was a little, she asked if it was due to the uncertainty of the assessment, I said that yes it was. Then she started talking me through what we'd be doing: as a psychology student, it was quite interesting. We started off by talking about how I'd be taking the WAIS test for intelligence, which would rate me in terms of separate areas. She said that people with Asperger's tend to be great in some areas but markedly low in others, which should be picked up on. She said that research suggests that the corpus callosum - the part of the brain which connects the two hemispheres - doesn't work as well in people with Asperger's as with the general population, sometimes resulting in a difference in skill levels. She also gave an interesting analogy for Asperger's: she described it as having the same hardware as a typical person, but different software, resulting in different functioning. I wonder more if it's the other way round: that having Asperger's is like trying to run the same software but having different hardware, so it doesn't always work properly and sometimes results in errors. I only thought about this when I got home, though, so wasn't able to share this thought with her.
The first task was block design: I was shown a picture, and had to recreate it with blocks which had all-white faces, all-red faces, and half-white-half-red faces. I used to enjoy playing with tangrams when I was younger, and found this quite easy. After that, I was given two words and asked to say how they were similar, e.g. 'apple' and 'banana'. They got more difficult, and soon I was struggling - I knew there was a difference, but couldn't get it into words very easily. After that I was shown a sequence, and asked to pick the picture that would complete the sequence, e.g. red square-white square-red square-what next? At the end of that task I was told I'd got them all correct, that made me smile. Then I was told to repeat back a string of numbers, from two digits up to nine digits, then to repeat the digits backwards, then to repeat them in numerical order (e.g. 1-2-3). For the next task, I was shown two pictures, and had to indicate if either of them appeared in a sequence of objects: the idea was to see how many of these I could get through in two minutes. Then I was asked to define words - again I had trouble with this, even though I almost always understood what the word meant. Then I was shown a picture of a shape, and asked to pick three smaller shapes (out of six options) that would make up the larger shape when put together. I was then shown a key where the numbers 1-9 related to a picture, and I had to draw the corresponding picture underneath a string of digits - again this was to see how many I could complete in two minutes. After that I was asked some mental maths questions - they were fairly easy - and finally I was asked some general knowledge questions. There were only two of which I had no idea: I hadn't known before that it takes 8 minutes for sunlight to reach the Earth's surface, or that the circumference of the Earth is just shy of 25,000 miles. You live and learn.
After that I filled in a sensory questionnaire, asking me to rate statements relating to my senses from 'almost never' to 'almost always', e.g. 'I enjoy wearing bright-coloured clothing'. I'm quite noise- and touch-sensitive, I'm less overly-taste-sensitive than I was before university, otherwise I think my senses are relatively normal.
Mum and Dad arrived for the second part of the assessment just as I'd finished the sensory questionnaire: we moved to a larger room so that there was enough room for the three of us and the psychologist. Mum had brought the papers from my previous assessments as a 2 and 10 year old, and the first part of the interview was Mum telling the psychologist my history up to this point, with Dad adding details. Then they were both asked specific questions about my behaviour and relationships as a child, as a teenager, and I was asked about my behaviours and perceptions now, with Mum and Dad giving more details and examples. I think this took about an hour and a half or so: it was quite difficult for me to hear what I'd been like when I was younger - I was a very difficult toddler, a difficult and inappropriately-behaved child, and an overly difficult-to-talk-to teenager. I like to think that now I'm a nice person, but it's taken a lot of work to get to this point. Still, as Mum later said, there are times to gloss over the details and say that they don't matter now, and there are times - like during assessments - when the painful (to me) truth needs to be said. What's most difficult is hearing my parents talk about the difficulties I have now: even though I really, really do try to overcome these, part of that involves acknowledging that I have difficulties with some things. My parents worry that because of the way I am, I could be taken advantage of: to be honest the same thought occurs to me, which worries me.
On an interesting note, at one point I was asked what my hobbies were, I included computer gaming. When asked what my favourite game was, I truthfully said The Sims: interestingly, the psychologist said that she'd have bet money that I'd say that. She explained that in the years she's worked with diagnostic services, most of the teenagers and young adults she's met have claimed The Sims to be their favourite game - much like young children claim Thomas the Tank Engine to be their favourite programme. I'd known about young children with Thomas (I for one would insist on watching the same episodes of Thomas over and over, and collected the little model trains and wanted nothing but models of Annie and Clarabel the coaches for my first-day-of-school present), but had never heard anything about young adults with The Sims - that intrigued me. I enjoy The Sims because to me, it's a socially acceptable dolls' house, and I absolutely loved acting out scenarios with my dolls.
At the end of the interview, the psychologist said that she'd support a diagnosis of mild Asperger's: she said that my intelligence has enabled me to find coping strategies, so I should and would be successful in life, and can clearly live independently, although in some areas I will probably need support. She said that she'd write up the report in the next few days and send it to me, and that with it she'd include a detailed report of my strengths and weaknesses based on the interviews and the tests, and also - this I like - a letter to be given to employers/lecturers/support services/etc, saying that I have Asperger's, that these are my strengths and weaknesses, and could they take these into consideration. Mum said that this is what she'd wanted most for me - that I'd have something to show employers, since I'll most likely have some sort of difficulty in the workplace with coworkers or understanding instructions, to say that there's a reason for my oddities. I think it could be useful to take to university, to show that there's a reason that I can't always express my thoughts too well in my work. Dad was impressed at how thorough the assessment was. I'm glad most of all that I got a result, and that it was the result I was, in a way, hoping for.
So... now I just have to wait for the report to come through: I'm curious to read it. Mum gave me photocopies of the papers from my earlier assessments: I'd read the one from when I was 2 before, but this was the first time I'd seen the one from when I was 10. I read through them this afternoon: to be honest, if there'd been the understanding of Asperger's back then that there is now, I probably would have been diagnosed at 10, given the descriptions of what I've said, done, and the scores I gained on tests. It was interesting to read, it brought back a few memories of that time, and clarified some things I'd wondered about back then.
I'm happy. I really am. I'm not a 'borderline Aspie' anymore: to change the words of Pinocchio, "I'm a real Aspie!"
...I'm not sure why I wrote that in such an enthusiastic way. Up until this morning I was having second thoughts about going for the assessment - I went to bed fairly early last night, couldn't sleep, went back downstairs to talk to Cat about my worries about being assessed, then went back to bed and had a very restless night. Finally it was morning: I aimed to leave the house at 8.30am to be there for my 10am appointment, so I got up at 8, had breakfast, then chatted to Cat for a bit before leaving at 8.40. I hopped on a bus, mistakenly got off one stop too early, but still arrived with about 25 minutes to spare. So I kept walking, then turned back and went into the centre 10 minutes early.
The psychologist met me at reception when I entered (I was surprised that I didn't have to wait at all), and once I'd signed in and had been offered tea, we went to a small conference room. There she asked me if I was feeling nervous at all, I truthfully said that I was a little, she asked if it was due to the uncertainty of the assessment, I said that yes it was. Then she started talking me through what we'd be doing: as a psychology student, it was quite interesting. We started off by talking about how I'd be taking the WAIS test for intelligence, which would rate me in terms of separate areas. She said that people with Asperger's tend to be great in some areas but markedly low in others, which should be picked up on. She said that research suggests that the corpus callosum - the part of the brain which connects the two hemispheres - doesn't work as well in people with Asperger's as with the general population, sometimes resulting in a difference in skill levels. She also gave an interesting analogy for Asperger's: she described it as having the same hardware as a typical person, but different software, resulting in different functioning. I wonder more if it's the other way round: that having Asperger's is like trying to run the same software but having different hardware, so it doesn't always work properly and sometimes results in errors. I only thought about this when I got home, though, so wasn't able to share this thought with her.
The first task was block design: I was shown a picture, and had to recreate it with blocks which had all-white faces, all-red faces, and half-white-half-red faces. I used to enjoy playing with tangrams when I was younger, and found this quite easy. After that, I was given two words and asked to say how they were similar, e.g. 'apple' and 'banana'. They got more difficult, and soon I was struggling - I knew there was a difference, but couldn't get it into words very easily. After that I was shown a sequence, and asked to pick the picture that would complete the sequence, e.g. red square-white square-red square-what next? At the end of that task I was told I'd got them all correct, that made me smile. Then I was told to repeat back a string of numbers, from two digits up to nine digits, then to repeat the digits backwards, then to repeat them in numerical order (e.g. 1-2-3). For the next task, I was shown two pictures, and had to indicate if either of them appeared in a sequence of objects: the idea was to see how many of these I could get through in two minutes. Then I was asked to define words - again I had trouble with this, even though I almost always understood what the word meant. Then I was shown a picture of a shape, and asked to pick three smaller shapes (out of six options) that would make up the larger shape when put together. I was then shown a key where the numbers 1-9 related to a picture, and I had to draw the corresponding picture underneath a string of digits - again this was to see how many I could complete in two minutes. After that I was asked some mental maths questions - they were fairly easy - and finally I was asked some general knowledge questions. There were only two of which I had no idea: I hadn't known before that it takes 8 minutes for sunlight to reach the Earth's surface, or that the circumference of the Earth is just shy of 25,000 miles. You live and learn.
After that I filled in a sensory questionnaire, asking me to rate statements relating to my senses from 'almost never' to 'almost always', e.g. 'I enjoy wearing bright-coloured clothing'. I'm quite noise- and touch-sensitive, I'm less overly-taste-sensitive than I was before university, otherwise I think my senses are relatively normal.
Mum and Dad arrived for the second part of the assessment just as I'd finished the sensory questionnaire: we moved to a larger room so that there was enough room for the three of us and the psychologist. Mum had brought the papers from my previous assessments as a 2 and 10 year old, and the first part of the interview was Mum telling the psychologist my history up to this point, with Dad adding details. Then they were both asked specific questions about my behaviour and relationships as a child, as a teenager, and I was asked about my behaviours and perceptions now, with Mum and Dad giving more details and examples. I think this took about an hour and a half or so: it was quite difficult for me to hear what I'd been like when I was younger - I was a very difficult toddler, a difficult and inappropriately-behaved child, and an overly difficult-to-talk-to teenager. I like to think that now I'm a nice person, but it's taken a lot of work to get to this point. Still, as Mum later said, there are times to gloss over the details and say that they don't matter now, and there are times - like during assessments - when the painful (to me) truth needs to be said. What's most difficult is hearing my parents talk about the difficulties I have now: even though I really, really do try to overcome these, part of that involves acknowledging that I have difficulties with some things. My parents worry that because of the way I am, I could be taken advantage of: to be honest the same thought occurs to me, which worries me.
On an interesting note, at one point I was asked what my hobbies were, I included computer gaming. When asked what my favourite game was, I truthfully said The Sims: interestingly, the psychologist said that she'd have bet money that I'd say that. She explained that in the years she's worked with diagnostic services, most of the teenagers and young adults she's met have claimed The Sims to be their favourite game - much like young children claim Thomas the Tank Engine to be their favourite programme. I'd known about young children with Thomas (I for one would insist on watching the same episodes of Thomas over and over, and collected the little model trains and wanted nothing but models of Annie and Clarabel the coaches for my first-day-of-school present), but had never heard anything about young adults with The Sims - that intrigued me. I enjoy The Sims because to me, it's a socially acceptable dolls' house, and I absolutely loved acting out scenarios with my dolls.
At the end of the interview, the psychologist said that she'd support a diagnosis of mild Asperger's: she said that my intelligence has enabled me to find coping strategies, so I should and would be successful in life, and can clearly live independently, although in some areas I will probably need support. She said that she'd write up the report in the next few days and send it to me, and that with it she'd include a detailed report of my strengths and weaknesses based on the interviews and the tests, and also - this I like - a letter to be given to employers/lecturers/support services/etc, saying that I have Asperger's, that these are my strengths and weaknesses, and could they take these into consideration. Mum said that this is what she'd wanted most for me - that I'd have something to show employers, since I'll most likely have some sort of difficulty in the workplace with coworkers or understanding instructions, to say that there's a reason for my oddities. I think it could be useful to take to university, to show that there's a reason that I can't always express my thoughts too well in my work. Dad was impressed at how thorough the assessment was. I'm glad most of all that I got a result, and that it was the result I was, in a way, hoping for.
So... now I just have to wait for the report to come through: I'm curious to read it. Mum gave me photocopies of the papers from my earlier assessments: I'd read the one from when I was 2 before, but this was the first time I'd seen the one from when I was 10. I read through them this afternoon: to be honest, if there'd been the understanding of Asperger's back then that there is now, I probably would have been diagnosed at 10, given the descriptions of what I've said, done, and the scores I gained on tests. It was interesting to read, it brought back a few memories of that time, and clarified some things I'd wondered about back then.
I'm happy. I really am. I'm not a 'borderline Aspie' anymore: to change the words of Pinocchio, "I'm a real Aspie!"
Tuesday, 27 September 2011
The Flower
The innocent flower sheds a tear at the world destroying her beauty...
Yet although the world destroys her beauty, the innocent flower still remains.
What if the flower were to be destroyed? What would we have then...?
Yet if the flower dies, surely we would be left a leaf? Something to remember it by?
Or would it be better to have the stem, ugly though it is, to bring a new flower to life?
Let us keep the stem and reuse it. But we need good soil to place it in for it to grow...
But where can we find good soil on this Earth? Is there any left that will allow the flower to grow?
I wrote this when I was 15: over three months at the end of some of my diary entries, I'd write one line about this flower, and I've only just put the seven lines together.
I've tried my hand at writing poetry before, and I'm not good at it at all. I can come up with ideas and stories, but I'm not good with words and with phrasing things. I can't remember why I added a picture of a flower at the end of one of my diary entries - I think I was feeling very low at the time, and felt that I was like this flower. With each line, I drew a picture of this flower slowly decaying, then of her leaf, then of the stem being planted in fresh ground. I saw it as being hopeful that I could recover from the depression I felt at the time.
Thinking about it, where is good soil on this Earth for this flower to grow? Assuming that we're using the flower as an analogy for myself as a possible-Aspie, is there somewhere where I could be and develop my full potential? Or will this flower (this sounds a bit pretentious) be in an environment that's unnatural for her, and will she just have to focus her attention to adaptation rather than self-growth? Maybe we're all flowers in this respect: sometimes we develop our full potential, other times we just try to survive and adapt.
I like to think that everybody is capable of reaching their full potential, as long as there is hope (I'm an annoying optimist in some respects).
Yet although the world destroys her beauty, the innocent flower still remains.
What if the flower were to be destroyed? What would we have then...?
Yet if the flower dies, surely we would be left a leaf? Something to remember it by?
Or would it be better to have the stem, ugly though it is, to bring a new flower to life?
Let us keep the stem and reuse it. But we need good soil to place it in for it to grow...
But where can we find good soil on this Earth? Is there any left that will allow the flower to grow?
I wrote this when I was 15: over three months at the end of some of my diary entries, I'd write one line about this flower, and I've only just put the seven lines together.
I've tried my hand at writing poetry before, and I'm not good at it at all. I can come up with ideas and stories, but I'm not good with words and with phrasing things. I can't remember why I added a picture of a flower at the end of one of my diary entries - I think I was feeling very low at the time, and felt that I was like this flower. With each line, I drew a picture of this flower slowly decaying, then of her leaf, then of the stem being planted in fresh ground. I saw it as being hopeful that I could recover from the depression I felt at the time.
Thinking about it, where is good soil on this Earth for this flower to grow? Assuming that we're using the flower as an analogy for myself as a possible-Aspie, is there somewhere where I could be and develop my full potential? Or will this flower (this sounds a bit pretentious) be in an environment that's unnatural for her, and will she just have to focus her attention to adaptation rather than self-growth? Maybe we're all flowers in this respect: sometimes we develop our full potential, other times we just try to survive and adapt.
I like to think that everybody is capable of reaching their full potential, as long as there is hope (I'm an annoying optimist in some respects).
2005 and 2007 diary entries
Thursday 16th June, 2005
Today Nicki was back at school and I felt shunted again. I think maybe I'm the one being hostile. I don't even try to join Mel and Nicki to make a group. Why? I don't like being in a group. It's either one-to-one or nothing. It's completely mad and I hate it. Why's it like that? I think I'm Asperger's, They have social problems. But I've been diagnosed as borderline, but I'm still 'normal'. I don't get it. I don't understand it. When I try, I end up getting panicky. I know that Asperger's people are like that - I researched it. I'm feeling panicky now, so I'll stop it.
I had a look through my diaries for anything relating to Asperger's: this is the first entry I found, from when I was 14. I'm still looking now, and have just found some poetry that I wrote. I'll put the poetry in a blog post, then keep searching for Asperger's references.
...later...
I found the entry where I talk about finding papers, but no reference is made there to one of the papers being from my childhood assessment for autism. So far I haven't found anything else relating to Asperger's or directly describing social issues (although reading some of the interactions, it seems clearer to me now that social issues did exist).
Wednesday 3rd January, 2007
"So we talked. It wasn't as fluid as I'd hoped. I had trouble starting at first... my mouth and brain didn't really click together. Ella suggested I write it down instead."
I was 16 at this point - this phrase sums up in a way how I sometimes get when trying to initiate conversations. I just don't know where or how to start them, and when I do, sometimes I stumble over words, or don't know when to stop, or it sounds stilted and forced. I wish that this wasn't the case: how can I rely on others to always start conversations? For the most part I get by okay, since a lot of my friends are talkative, however there are some people with whom I just don't know how to talk. If they start the conversation, this works without too much problem, then we go back to silence even though I know it should be my turn to speak. I don't know how to explain this to people, though, without seeming unfriendly and antisocial.
...even later...
I've just skimmed through all of my diaries, and have finished reading the last entry (just before Christmas of my first year at uni). I can't find anything else really relevant to being Aspie or that go into depth about social problems, so I'll leave it at this for now. That, and it's gone 2am and my eye's twitching, so sleep is in order.
Today Nicki was back at school and I felt shunted again. I think maybe I'm the one being hostile. I don't even try to join Mel and Nicki to make a group. Why? I don't like being in a group. It's either one-to-one or nothing. It's completely mad and I hate it. Why's it like that? I think I'm Asperger's, They have social problems. But I've been diagnosed as borderline, but I'm still 'normal'. I don't get it. I don't understand it. When I try, I end up getting panicky. I know that Asperger's people are like that - I researched it. I'm feeling panicky now, so I'll stop it.
I had a look through my diaries for anything relating to Asperger's: this is the first entry I found, from when I was 14. I'm still looking now, and have just found some poetry that I wrote. I'll put the poetry in a blog post, then keep searching for Asperger's references.
...later...
I found the entry where I talk about finding papers, but no reference is made there to one of the papers being from my childhood assessment for autism. So far I haven't found anything else relating to Asperger's or directly describing social issues (although reading some of the interactions, it seems clearer to me now that social issues did exist).
Wednesday 3rd January, 2007
"So we talked. It wasn't as fluid as I'd hoped. I had trouble starting at first... my mouth and brain didn't really click together. Ella suggested I write it down instead."
I was 16 at this point - this phrase sums up in a way how I sometimes get when trying to initiate conversations. I just don't know where or how to start them, and when I do, sometimes I stumble over words, or don't know when to stop, or it sounds stilted and forced. I wish that this wasn't the case: how can I rely on others to always start conversations? For the most part I get by okay, since a lot of my friends are talkative, however there are some people with whom I just don't know how to talk. If they start the conversation, this works without too much problem, then we go back to silence even though I know it should be my turn to speak. I don't know how to explain this to people, though, without seeming unfriendly and antisocial.
...even later...
I've just skimmed through all of my diaries, and have finished reading the last entry (just before Christmas of my first year at uni). I can't find anything else really relevant to being Aspie or that go into depth about social problems, so I'll leave it at this for now. That, and it's gone 2am and my eye's twitching, so sleep is in order.
Friday, 23 September 2011
Telephones and the assessment
Earlier I called home, and had an hour-long chat with my mum. For the most part I dislike phone conversations, especially with people I don't know well - when my friends and I order food, I try to not be the one who has to phone and order (whenever the online ordering service doesn't work), and I'd prefer to send an email or text or handwritten note than call somebody with a message - I remember being about 9 years old and writing out exactly what I was going to say to a girl whose birthday party I couldn't attend, then not knowing what to say when she started speaking and I'd used all of the words on my piece of paper. On the other hand, if I want to talk to somebody rather than just deliver a message, then I quite enjoy speaking on the phone. I sometimes have trouble knowing what to say, though, and knowing whether or not it's my turn to speak. And sometimes when on the phone for a long time, I feel that I need a break - I guess with day-to-day conversations, I tend to do other things while talking to somebody, even if it's just turning away for a minute to put the kettle on, or going to fetch something, so I get 'breaks' from human contact that way.
On a side-note, I had the Lady Gaga song 'Telephone' stuck in my head for two of my exams last summer. This doesn't relate to anything other than the title in this blog post.
Anyway, while talking to Mum, she mentioned that my assessment is in a week's time. She accidentally said diagnosis rather than assessment - and this made me a bit worried. One of the reasons I'm still not sure about getting an assessment is this: what if I don't get the diagnosis that I'm (for want of a better term) hoping for? What if I'm told, at the end of the day, that I'm borderline, or 'normal'? Would that make the assessment a waste? Am I just failing at being, rather than having a condition that makes this so? I will admit that this does quite worry me. I guess we'll just have to wait and see - on the other hand, what if I'm told that I have more difficulties than I think I do? Am I possibly too 'different' to adapt successfully? (I like to think that while I don't fit in, I can and do adapt fairly well).
The psychologist who'll be doing the assessment asked me to bring along papers from my last assessments: Mum said that almost all of them are in boxes (my parents are moving house and have most of their things packed up), however she was preparing something which is coming along so far. I'm a little anxious as to what she means by this - is she listing my traits, or incidents where they've stood out? Is she listing my assessment history? I'd be quite anxious to hear this - sometimes I get anxious listening to stories from my past, especially if they involve large social blunders on my part (I think most people are like this, though). Rationally I shouldn't worry since anything I hear is bound to be something that I already know, or should be made aware of anyway.
It'll be nice seeing Mum and Dad again when they both come up for the assessment: I haven't seen them since I moved into my new house on 1st September. They won't be staying for long though, since they need to go home to look after the dog, and the journey up from where we live is fairly tiring.
The assessment will take place from 10.30am and will last until around 2 or 3pm, I was told. In the evening I'm going to a uni-friend's birthday party, I hope that I'll be happy enough by the assessment's result to enjoy myself fully in the evening.
On a side-note, I had the Lady Gaga song 'Telephone' stuck in my head for two of my exams last summer. This doesn't relate to anything other than the title in this blog post.
Anyway, while talking to Mum, she mentioned that my assessment is in a week's time. She accidentally said diagnosis rather than assessment - and this made me a bit worried. One of the reasons I'm still not sure about getting an assessment is this: what if I don't get the diagnosis that I'm (for want of a better term) hoping for? What if I'm told, at the end of the day, that I'm borderline, or 'normal'? Would that make the assessment a waste? Am I just failing at being, rather than having a condition that makes this so? I will admit that this does quite worry me. I guess we'll just have to wait and see - on the other hand, what if I'm told that I have more difficulties than I think I do? Am I possibly too 'different' to adapt successfully? (I like to think that while I don't fit in, I can and do adapt fairly well).
The psychologist who'll be doing the assessment asked me to bring along papers from my last assessments: Mum said that almost all of them are in boxes (my parents are moving house and have most of their things packed up), however she was preparing something which is coming along so far. I'm a little anxious as to what she means by this - is she listing my traits, or incidents where they've stood out? Is she listing my assessment history? I'd be quite anxious to hear this - sometimes I get anxious listening to stories from my past, especially if they involve large social blunders on my part (I think most people are like this, though). Rationally I shouldn't worry since anything I hear is bound to be something that I already know, or should be made aware of anyway.
It'll be nice seeing Mum and Dad again when they both come up for the assessment: I haven't seen them since I moved into my new house on 1st September. They won't be staying for long though, since they need to go home to look after the dog, and the journey up from where we live is fairly tiring.
The assessment will take place from 10.30am and will last until around 2 or 3pm, I was told. In the evening I'm going to a uni-friend's birthday party, I hope that I'll be happy enough by the assessment's result to enjoy myself fully in the evening.
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.
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.
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.).
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.).
Friday, 29 July 2011
'Cured Aspie'
One of my relatives described herself earlier as a "cured Aspie". After making a joke about 'cured Aspie' sounding like 'cured bacon', I said that I don't believe that Asperger's can be cured. It can be overcome, certainly, by learning to adapt to the social world, but it's still there. This relative then said that of course she didn't believe that people with Asperger's could be cured, they just overcome. And anyway, she claimed, she was normal. I hope that this isn't confusing to just me!
A bit later, she said, "You probably didn't have depression. It was probably just Asperger's." While the two often go hand-in-hand - here's a short blog post about it that I found earlier - I would never say that one contains the other. I know plenty of depressed people who aren't Aspie, and depression isn't a defining factor of Asperger's. Furthermore, a lot of the depression that I've experienced over the last year or so has been linked to certain events and thoughts about them, rather than being related to my social difficulties. Plus I didn't like being told that I probably "didn't have depression": it felt as though this relative was trying to ascertain my feelings for me, rather than allowing me to have and know them for myself. Story short: yes, I was depressed. Yes, while I'm often content now, I accept that it's still there and will probably pop up again when something upsets me. And no, while Asperger's and depression can be linked, they are not interchangeable.
Lately I've been having more depression-spells and Aspie-moments, I hope that these soon become less frequent.
A bit later, she said, "You probably didn't have depression. It was probably just Asperger's." While the two often go hand-in-hand - here's a short blog post about it that I found earlier - I would never say that one contains the other. I know plenty of depressed people who aren't Aspie, and depression isn't a defining factor of Asperger's. Furthermore, a lot of the depression that I've experienced over the last year or so has been linked to certain events and thoughts about them, rather than being related to my social difficulties. Plus I didn't like being told that I probably "didn't have depression": it felt as though this relative was trying to ascertain my feelings for me, rather than allowing me to have and know them for myself. Story short: yes, I was depressed. Yes, while I'm often content now, I accept that it's still there and will probably pop up again when something upsets me. And no, while Asperger's and depression can be linked, they are not interchangeable.
Lately I've been having more depression-spells and Aspie-moments, I hope that these soon become less frequent.
Sunday, 24 July 2011
The manual?
I read a lot when I was a child: in my primary school there were different colours for different reading levels, perhaps 8 or 10 in all, the most advanced being mauve, brown and grey in that order. I started reading mauve books when I was 5, and soon worked my way up to grey. I read of boarding schools and witches, of bullies and time travel. At home I read too: I read the Dorling Kindersley hardbooks on the human body, and once read about a factual book about the creation of Santa Claus while somehow still believing that he existed. Mum loves to read autobiographies of people growing up in hardship, and when I got a bit older I'd read those too. Some books were about autism - given that my brother is autistic, this isn't surprising. Some books wrote about autism in a different way, though: people who could speak, who had no friends, who had trouble knowing what to say and how to stand. People who couldn't act 'naturally'. At that point I'd feel funny and have to stop reading - I didn't want to be like those people, I wanted to be a normal child.
For all the books I read, I never found one that would have made things a lot easier. See, the other children at school knew what to say, knew how to act, knew when to talk and when to be quiet. They didn't have to stare at others to find out how to act - they just knew. I figured that while being taught to talk and walk, they must have been taught social skills too, and for a while was upset at my parents for having not taught me as my peers had clearly been taught (this is how 7 year old me thought at the time). Later I thought that maybe they'd all learned social skills from books - so I tried to find a manual on how to be human. I searched on our bookshelves and in the library, but I had no luck. I was shown books on posture, but they never said how exactly I was to achieve such posture, and how I could tell which situation I was in. I was shown books on building confidence, but they didn't tell me what words I should use, or how exactly one could use inflection. What muscles do you use, and how do you consciously know which pitch to use?
Even nowadays when I've learned a lot more about how to be, I still wish that there was a manual, for those of us who were born without one in our minds.
For all the books I read, I never found one that would have made things a lot easier. See, the other children at school knew what to say, knew how to act, knew when to talk and when to be quiet. They didn't have to stare at others to find out how to act - they just knew. I figured that while being taught to talk and walk, they must have been taught social skills too, and for a while was upset at my parents for having not taught me as my peers had clearly been taught (this is how 7 year old me thought at the time). Later I thought that maybe they'd all learned social skills from books - so I tried to find a manual on how to be human. I searched on our bookshelves and in the library, but I had no luck. I was shown books on posture, but they never said how exactly I was to achieve such posture, and how I could tell which situation I was in. I was shown books on building confidence, but they didn't tell me what words I should use, or how exactly one could use inflection. What muscles do you use, and how do you consciously know which pitch to use?
Even nowadays when I've learned a lot more about how to be, I still wish that there was a manual, for those of us who were born without one in our minds.
Aspie Quiz
I signed up on the WrongPlanet forum a few months ago (a forum for those with Asperger's or suspected Asperger's, and friends and family of Aspies) a day or two after I started this blog. Sometimes it's good to post there: I feel more able to articulate my thoughts in a way that's 'natural' to me, rather than having to go over what I've written twice or three times to ensure that it makes sense from more than one angle. A few days ago I wrote something on a messageboard elsewhere that was interpreted by almost every commenter as offensive, while I hadn't read it that way at all: now I'm extra-careful when speaking or writing. On the WrongPlanet forum, though, I don't feel obliged to do that, since I'm not expected to have perfect communication skills.
I digress. One of the other commenters on a thread that I was reading (it was an off-the-wall thread about what music we were listening to at that moment: I happened to be listening to a YouTube video of 'Psychotherapy' by Melanie Safka, while right now I'm listening to 'A River Flows in You' by Yiruma) reminded me of the 'Aspie Quiz'. It's an online quiz, with questions such as "Are you often surprised by what people's motives are?" and "Do you enjoy team sports?" The responses to the questions can be chosen from 0 (No/never), 1 (a little) or 2 (Yes/often). At the end of the 150-item quiz, two scores are given out of 200: an 'Aspie score' and a 'Neurotypical' score ('Neurotypical' is a word that I only learned a year or two ago, which refers to non-autistic people. Cat brought up the point that this implies that people with other conditions such as Down's Syndrome would be classed as neurotypical under this definition: but I digress again).
At the end of the quiz, I got an Aspie score of 123/200, and an NT (neurotypical) score of 74/200, and a statement that I am 'likely to be Aspie'. I'm not wholly sure how the mathematics of the test works, nor am I convinced of the validity of the test (I originally typed in 'reliability', then recalled statistics lectures where the difference between validity and reliability was drummed into us: validity is whether or not the test measures what it sets out to measure, while reliability is whether or not the responses are consistent across different people), but I still find it interesting. I'm still on the waiting list for an assessment - it's been about 4 months since I was sent a referral letter saying that I'd have to wait 6 months or so, but I don't mind waiting a little longer.
Earlier I thought that the way I'm writing this blog is a bit different to the way I've written my other blogs, i.e. those I wrote while in Peru earlier this year and two years ago. Here it seems that rather than writing about what happened in a way that I think others would prefer, I'm focusing in this blog on the things that are important to me. Sometimes I digress and go off on tangents: sometimes when thinking I will do this, because the tangent seems important and relevant to me. I can't remember if I started keeping this blog because I wanted my friends to see that I might be Aspie, or if I wanted to share with the wider world my thoughts and outlooks on things, or if I just wanted to write down how I felt, in a way that suits me rather than in a way that suits others. I write stories a lot: the reason that I haven't gotten far in the plotline is that I read what I've written, and rewrite it over and over. It never seems perfect, but I try to write in a way that others will appreciate. I do that with my emails and other blogs: maybe I started this blog because I wanted a space where I didn't have to do that. A space where I could go off on tangents, where I could talk about 'irrelevant' things (I'd have liked to know that I'd been listening to 'Psychotherapy' and am now playing 'A River Flows in You' on repeat, but I'm aware that these don't relate at all to the blog post) and not have to go over everything unless I wasn't happy with it, for my own reading.
Now it feels as though I'm rambling, so I'll stop here.
I digress. One of the other commenters on a thread that I was reading (it was an off-the-wall thread about what music we were listening to at that moment: I happened to be listening to a YouTube video of 'Psychotherapy' by Melanie Safka, while right now I'm listening to 'A River Flows in You' by Yiruma) reminded me of the 'Aspie Quiz'. It's an online quiz, with questions such as "Are you often surprised by what people's motives are?" and "Do you enjoy team sports?" The responses to the questions can be chosen from 0 (No/never), 1 (a little) or 2 (Yes/often). At the end of the 150-item quiz, two scores are given out of 200: an 'Aspie score' and a 'Neurotypical' score ('Neurotypical' is a word that I only learned a year or two ago, which refers to non-autistic people. Cat brought up the point that this implies that people with other conditions such as Down's Syndrome would be classed as neurotypical under this definition: but I digress again).
At the end of the quiz, I got an Aspie score of 123/200, and an NT (neurotypical) score of 74/200, and a statement that I am 'likely to be Aspie'. I'm not wholly sure how the mathematics of the test works, nor am I convinced of the validity of the test (I originally typed in 'reliability', then recalled statistics lectures where the difference between validity and reliability was drummed into us: validity is whether or not the test measures what it sets out to measure, while reliability is whether or not the responses are consistent across different people), but I still find it interesting. I'm still on the waiting list for an assessment - it's been about 4 months since I was sent a referral letter saying that I'd have to wait 6 months or so, but I don't mind waiting a little longer.
Earlier I thought that the way I'm writing this blog is a bit different to the way I've written my other blogs, i.e. those I wrote while in Peru earlier this year and two years ago. Here it seems that rather than writing about what happened in a way that I think others would prefer, I'm focusing in this blog on the things that are important to me. Sometimes I digress and go off on tangents: sometimes when thinking I will do this, because the tangent seems important and relevant to me. I can't remember if I started keeping this blog because I wanted my friends to see that I might be Aspie, or if I wanted to share with the wider world my thoughts and outlooks on things, or if I just wanted to write down how I felt, in a way that suits me rather than in a way that suits others. I write stories a lot: the reason that I haven't gotten far in the plotline is that I read what I've written, and rewrite it over and over. It never seems perfect, but I try to write in a way that others will appreciate. I do that with my emails and other blogs: maybe I started this blog because I wanted a space where I didn't have to do that. A space where I could go off on tangents, where I could talk about 'irrelevant' things (I'd have liked to know that I'd been listening to 'Psychotherapy' and am now playing 'A River Flows in You' on repeat, but I'm aware that these don't relate at all to the blog post) and not have to go over everything unless I wasn't happy with it, for my own reading.
Now it feels as though I'm rambling, so I'll stop here.
Saturday, 16 July 2011
Chewing pencils
When I was in school, I'd chew pencils. One boy in my class in Year 1 would eat the bits of pencil that he'd bitten off, but I'd just chew. The reason for this isn't that I was absent-minded: it's that the feeling of having my teeth break wood, particularly my canine teeth, is really satisfying. I'd sometimes just sink in one canine tooth at a time into a pencil, until it was full of little holes.
I don't do this anymore to pencils. Now I use apples.
I don't do this anymore to pencils. Now I use apples.
Monday, 11 July 2011
A not-so-good approach to being overwhelmed
I'm told I take things too personally: but if somebody says something to me, how can I take it in a way that doesn't relate to me? For example, if somebody snaps at me, I'll assume it's because I've done something wrong to upset them, rather than considering that they may have been in a bad mood for other reasons. Even if I am aware that something else has upset them, I still think that it's because of something I've done to make things worse, in order for them to snap at me.
Most of the time, though, I can handle this, and just feel a bit confused and carry on the conversation as normal, if a bit more guarded. However, at times it can be overwhelming, and I tend to not react well. A few days ago I was in a rotten mood, and somebody said something that I took to be hurtful (even though I knew they didn't intend it to be so). My response, which I'm not happy about, was to quietly screech "Stop it" over and over, while grabbing a pillow over my head so that it pressed hard against my eyes and ears. I don't think much behaviour gets more Aspie than that: I haven't done this in a very long time, since I can usually control my responses in a more socially appropriate way. I think I was only like this for a half-minute or so before I calmed down enough to put the cushion down. The thing is, it did help: it was like I blocked out the world for a bit, just to give me a tiny bit of space to adapt to it before coming back. I was still on edge and overwhelmed for a while after, but I had more control.
It scared me. Usually when I'm overwhelmed, I go to the bathroom where nobody can see me to calm down a bit. Or otherwise I count in Spanish in my head, or fixate on a pattern. I don't know why doing this makes me feel better: but it's a more subtle coping strategy than screeching and pushing cushion into my ears. That said, I hadn't felt that overwhelmed in months. I know that I took things personally, but even when I tell myself that it's not always my fault, I still react badly when I'm snapped at.
Fingers crossed that this doesn't happen again for a fair while.
Most of the time, though, I can handle this, and just feel a bit confused and carry on the conversation as normal, if a bit more guarded. However, at times it can be overwhelming, and I tend to not react well. A few days ago I was in a rotten mood, and somebody said something that I took to be hurtful (even though I knew they didn't intend it to be so). My response, which I'm not happy about, was to quietly screech "Stop it" over and over, while grabbing a pillow over my head so that it pressed hard against my eyes and ears. I don't think much behaviour gets more Aspie than that: I haven't done this in a very long time, since I can usually control my responses in a more socially appropriate way. I think I was only like this for a half-minute or so before I calmed down enough to put the cushion down. The thing is, it did help: it was like I blocked out the world for a bit, just to give me a tiny bit of space to adapt to it before coming back. I was still on edge and overwhelmed for a while after, but I had more control.
It scared me. Usually when I'm overwhelmed, I go to the bathroom where nobody can see me to calm down a bit. Or otherwise I count in Spanish in my head, or fixate on a pattern. I don't know why doing this makes me feel better: but it's a more subtle coping strategy than screeching and pushing cushion into my ears. That said, I hadn't felt that overwhelmed in months. I know that I took things personally, but even when I tell myself that it's not always my fault, I still react badly when I'm snapped at.
Fingers crossed that this doesn't happen again for a fair while.
Saturday, 25 June 2011
Picnic
My exams ended today - it hasn't quite sunk in yet, though. Once my last exam ended and I had retrieved my rucksack from the storeroom, I headed to an indoors-picnic hosted by one of the university societies of which I am a member. I only joined a few months ago and have turned up to events maybe four times or so since then, so consequently I knew very few people.
Whenever I'm faced with a group of people who I don't know, I can't speak. Consequently I spent most of the time that I was there standing in a corner, listening to others speak but not feeling able to join in, and with my eyes darting from person to object. There were a couple of people who I knew, but we didn't talk for long. It was nobody's fault, the people did seem friendly - but I just couldn't join in. I spent a lot of the time looking at the clock wondering why I was there. I had a few one-to-ones with some people who asked me what my name was, that I could do - but once they started talking to someone else, I was back to standing silently. I stayed for an hour, then when there was a break in conversation I picked up my rucksack and said goodbye.
So... I have the feeling that the society members who I met today will think that I'm antisocial, and that the people who I knew before and have seen me as a chatty person will be quite confused with the way I acted. I really hope that nobody was offended by my not joining in: it's not that I wasn't interested, I just didn't feel a part of it. Maybe if I get to know more of the members in smaller groups, it'll be easier the next time there's a large event. Hopefully.
Whenever I'm faced with a group of people who I don't know, I can't speak. Consequently I spent most of the time that I was there standing in a corner, listening to others speak but not feeling able to join in, and with my eyes darting from person to object. There were a couple of people who I knew, but we didn't talk for long. It was nobody's fault, the people did seem friendly - but I just couldn't join in. I spent a lot of the time looking at the clock wondering why I was there. I had a few one-to-ones with some people who asked me what my name was, that I could do - but once they started talking to someone else, I was back to standing silently. I stayed for an hour, then when there was a break in conversation I picked up my rucksack and said goodbye.
So... I have the feeling that the society members who I met today will think that I'm antisocial, and that the people who I knew before and have seen me as a chatty person will be quite confused with the way I acted. I really hope that nobody was offended by my not joining in: it's not that I wasn't interested, I just didn't feel a part of it. Maybe if I get to know more of the members in smaller groups, it'll be easier the next time there's a large event. Hopefully.
Friday, 17 June 2011
The purple ribbon
Lately I've been (and still am!) quite stressed with exams. I've had one so far this summer, and I have five next week. I'm really not looking forward to them, I never do feel that I've revised enough. Anyway, whenever I'm stressed, I find that my traits seem to come out a bit more. Every evening when I walk home, I reach up to touch the leaves of the trees and just run them past my fingers: today I was a little upset (I'm wondering if 'perturbed' would be a better word in this situation) when I walked home a different route and missed out on this. Earlier I found an empy room and talked to myself for a bit before settling down to work. I became entranced with some bubble wrap that a friend had from a parcel she'd opened this morning. And another friend had a purple ribbon with some sellotape on it: he stuck it to my face as a joke, and I've been playing with it since.
Let me explain something about ribbons and string. You can run them through your fingers, and it feels amazing. You can tie them to two objects, push one object off a table, and watch as the second one slowly moves toward the edge before falling. When I was little I used to love tying things up with string: my climbing frame often had some weird pattern in it made from my skipping rope (Mum would make me take the rope down in case my brother ran into it and got hurt).
So this purple ribbon has been a de-stresser today: in the library I've been running it through my fingers, waving it through the air and just watching it flicker in response to the slightest twitch of my wrist. I wrapped it round my fingers in a patterned way, then as tight as I could get it, then around my wrists. It just feels good.
I wonder why it is that a ribbon can bring me so much joy.
Let me explain something about ribbons and string. You can run them through your fingers, and it feels amazing. You can tie them to two objects, push one object off a table, and watch as the second one slowly moves toward the edge before falling. When I was little I used to love tying things up with string: my climbing frame often had some weird pattern in it made from my skipping rope (Mum would make me take the rope down in case my brother ran into it and got hurt).
So this purple ribbon has been a de-stresser today: in the library I've been running it through my fingers, waving it through the air and just watching it flicker in response to the slightest twitch of my wrist. I wrapped it round my fingers in a patterned way, then as tight as I could get it, then around my wrists. It just feels good.
I wonder why it is that a ribbon can bring me so much joy.
Thursday, 9 June 2011
Jerky slapping
I volunteer weekly in a school for youngsters with special needs: they're some of the most genuine, amazing characters I've ever met. Truth be told, I find it so much easier being with SEN youngsters and adults than with non-SEN people. Anyway, today one of the youngsters was agitated and jerkily hit himself a few times in the face to calm down. One of the staff members wondered aloud why he did that, and how curious it was that it helped.
Sometimes when I'm agitated, I'm really tempted to jerk and sometimes end up hitting myself. It feels like there's too much energy bubbling up inside, and this is a quick release. If I'm on my own, sometimes I allow myself to do this (I never hit hard, and it somehow does help calm me down) - I lightly slapped my cheeks with the backs of my hands just now, that helped bring me back to reality. I'm most likely agitated due to revision stress, and having a large dinner - the extra energy and the stress certainly don't make me feel calm!
Just to clarify: this is completely different to self-harming. I don't do this to punish myself, or to feel pain, and I don't have much conscious control over where my hands do end up (sometimes this has resulted in me slapping the back of my hands against a wardrobe, or chairs, or door handles if they're in the wrong place at the wrong time). It's just an energy release. I understand why some of the youngsters at the school do this.
Sometimes when I'm agitated, I'm really tempted to jerk and sometimes end up hitting myself. It feels like there's too much energy bubbling up inside, and this is a quick release. If I'm on my own, sometimes I allow myself to do this (I never hit hard, and it somehow does help calm me down) - I lightly slapped my cheeks with the backs of my hands just now, that helped bring me back to reality. I'm most likely agitated due to revision stress, and having a large dinner - the extra energy and the stress certainly don't make me feel calm!
Just to clarify: this is completely different to self-harming. I don't do this to punish myself, or to feel pain, and I don't have much conscious control over where my hands do end up (sometimes this has resulted in me slapping the back of my hands against a wardrobe, or chairs, or door handles if they're in the wrong place at the wrong time). It's just an energy release. I understand why some of the youngsters at the school do this.
Tuesday, 7 June 2011
Dr Tony Attwood on Girls with Asperger's
About ten minutes ago while procrastinating (my exams start in 9 days!), I ended up on the BBC News page for Asperger's. Nothing new or helpful there, but there was a link to the Asperger Foundation website. I hadn't seen that site before, so I had a look: there was a link to an article by Dr Tony Attwood about girls and women with Asperger's, and how it can be different to Asperger's in males. So I had a look at the article.
Even halfway through, it really did feel like it was talking about me. It came almost as a relief: sometimes I worry that my traits aren't enough for me to be an Aspie, but this put my mind at rest, for now. I'll go through the bits that stuck out to me:
"...some (individuals) are reluctant to socialise with others and their personality can be described as passive. They can become quite adept at camouflaging their difficulties..."
I do enjoy being with others, but given the choice when my traits are strong that day, I'd prefer to stay away from social situations. Sometimes in a group I feel like this, and I try to hide my discomfort. I like to think that it works. Don't get me wrong, I love my friends dearly - but sometimes I can't easily handle being in a social situation.
"One strategy that has been used by many girls and some boys is to observe people who are socially skilled and to copy their mannerisms, voice and persona. This is a form of social echolalia or mirroring where the person acquires a superficial social competence by acting the part of another person."
I consciously did this for practically all of childhood, and most of adolescence: nowadays I catch myself doing this occassionally, but it doesn't seem as much effort now. One problem with this was that the other children/teens were forever accusing me of 'copying' them: I couldn't understand for a long time why this bothered them. I still can't think of a reason, but I accept that most people don't want to be copied.
"Playing with and talking to imaginary friends and dolls can also continue into the teenage years when the person would have been expected to mature beyond such play."
I had imaginary friends and acted out scenarios until I was about 12: after that, I still played with my dolls' house until I was 14, when my Mum insisted that it go in the loft space. Thankfully playing 'The Sims' on the computer was socially acceptable: it wasn't quite the same, but it was as close as I could get to imaginary play.
"(Some ladies') tone resembles a much younger person, having an almost child like quality... (many girls) may see no value in being fashionable, preferring practical clothing and not using cosmetics."
I often sound quite childish, and sometimes act childish: sometimes I alternate between over-playful and over-serious. I can't always find a balance: being serious hasn't gained me friendships and being playful has, so guess which one I tend to go for? As for clothes and make-up, they really don't interest me. I think Mum despairs at having a daughter who doesn't do her hair, put on make-up and dress in lovely clothes: in my defence, I hate the feel of make-up on my skin, and some pretty clothes just aren't practical. Sorry society, but you can't win on this one.
Even halfway through, it really did feel like it was talking about me. It came almost as a relief: sometimes I worry that my traits aren't enough for me to be an Aspie, but this put my mind at rest, for now. I'll go through the bits that stuck out to me:
"...some (individuals) are reluctant to socialise with others and their personality can be described as passive. They can become quite adept at camouflaging their difficulties..."
I do enjoy being with others, but given the choice when my traits are strong that day, I'd prefer to stay away from social situations. Sometimes in a group I feel like this, and I try to hide my discomfort. I like to think that it works. Don't get me wrong, I love my friends dearly - but sometimes I can't easily handle being in a social situation.
"One strategy that has been used by many girls and some boys is to observe people who are socially skilled and to copy their mannerisms, voice and persona. This is a form of social echolalia or mirroring where the person acquires a superficial social competence by acting the part of another person."
I consciously did this for practically all of childhood, and most of adolescence: nowadays I catch myself doing this occassionally, but it doesn't seem as much effort now. One problem with this was that the other children/teens were forever accusing me of 'copying' them: I couldn't understand for a long time why this bothered them. I still can't think of a reason, but I accept that most people don't want to be copied.
"Playing with and talking to imaginary friends and dolls can also continue into the teenage years when the person would have been expected to mature beyond such play."
I had imaginary friends and acted out scenarios until I was about 12: after that, I still played with my dolls' house until I was 14, when my Mum insisted that it go in the loft space. Thankfully playing 'The Sims' on the computer was socially acceptable: it wasn't quite the same, but it was as close as I could get to imaginary play.
"(Some ladies') tone resembles a much younger person, having an almost child like quality... (many girls) may see no value in being fashionable, preferring practical clothing and not using cosmetics."
I often sound quite childish, and sometimes act childish: sometimes I alternate between over-playful and over-serious. I can't always find a balance: being serious hasn't gained me friendships and being playful has, so guess which one I tend to go for? As for clothes and make-up, they really don't interest me. I think Mum despairs at having a daughter who doesn't do her hair, put on make-up and dress in lovely clothes: in my defence, I hate the feel of make-up on my skin, and some pretty clothes just aren't practical. Sorry society, but you can't win on this one.
Sunday, 5 June 2011
Net curtain
I wonder if all people sometimes feel like there's a net curtain between them and the world.
This happened to me earlier when I was in the pub (bear in mind I hadn't had anything to drink at this point) - there I was sitting with my friends, then my concentration slipped for a moment, and when I looked back they were 'removed'. By that I mean that though I could see them, it was like watching a video of them, rather than having them in front of me. I could hear their voices but the different conversations and the background music and the conversation of other pub-goers meant that I couldn't listen to what was going on, no matter how hard I concentrated. Whenever I did speak, I heard my voice too loudly in my mind, and I wasn't even sure if what I said related to the conversation: other times it felt unnatural, like I was saying words just for the sake of saying something.
This often happens when I go to the pub with my friends: this is one of the reasons why I don't often go nowadays, and why I don't stay for too long when I do go. Tonight I decided to stay until closing, but much as I love being with my friends, I was admittedly quite glad when the last bell went.
This happened to me earlier when I was in the pub (bear in mind I hadn't had anything to drink at this point) - there I was sitting with my friends, then my concentration slipped for a moment, and when I looked back they were 'removed'. By that I mean that though I could see them, it was like watching a video of them, rather than having them in front of me. I could hear their voices but the different conversations and the background music and the conversation of other pub-goers meant that I couldn't listen to what was going on, no matter how hard I concentrated. Whenever I did speak, I heard my voice too loudly in my mind, and I wasn't even sure if what I said related to the conversation: other times it felt unnatural, like I was saying words just for the sake of saying something.
This often happens when I go to the pub with my friends: this is one of the reasons why I don't often go nowadays, and why I don't stay for too long when I do go. Tonight I decided to stay until closing, but much as I love being with my friends, I was admittedly quite glad when the last bell went.
Saturday, 4 June 2011
Life is a play, and I wasn't given a script
Earlier while reading some comments on an article on Asperger's (yes, I should be revising for my exams, but I found this interesting) a lot of Aspies and self-diagnosed Aspies claim that they can feel empathy as adults. That they can feel deeply for other people, including family, friends and partners. Yet they claimed that this wasn't natural to them, that this was something that they had to learn as they grew up.
This is something that I wholly identify with. I do empathise with people, and I do care deeply. The truth is, though, I have had to learn this. I remember being frustrated when I was younger that I couldn't 'click', and confused that other children knew how to interact even though there wasn't an instruction manual on what to say and how to act in different situations. To the other children who accused me of staring: I was trying to see what you were doing, and hear which words you used, so that I could use them too. Even now I sometimes pay extra attention to the words and expression someone uses, so that I know what's appropriate and what's not (I hope that I'm not making this too obvious, though!).
Imagine that you're in a play. You're given a character and some scripts to learn. After a while you can repeat the words back flawlessly, but you're told that your character needs to stop sounding like they're just reciting the script. You need to 'become' the character, and eventually after much practice you can accurately show the character's emotions, so much that you can even imagine what they'll say or how they'll act if you're given a different script to learn.
Now imagine that you're given this character, but you're not given a script. All of the other cast members have scripts, yet nobody has a spare to lend you. You watch the other actors, unsure when it's your turn to act or speak, and you keep coming in in the wrong places, saying the wrong things. When people prompt you, you improvise, which sometimes doesn't work and just leaves everyone feeling embarrassed. On occassion you're told that the words you've come up with don't match up with how your character's meant to act and feel, but the behaviour that you feel fits the character doesn't fit in with the rest of the play. Sometimes you find someone's script and can see a few lines of what your character's supposed to say: when you use these words, however, you're told that your character needs to stop sounding like they're just reciting the script. Eventually you start getting to grips with things, and even though you don't always know what the script says you should do, you learn what's appropriate for the character to say and do.
Now imagine that life is this play, that the people around you are actors, and that you are the one without a script. This is how I often feel: even though I often talk and behave 'correctly' (or so I like to think!), social interaction and behaviour still don't come naturally to me, and sometimes there are moments when I take a few seconds to think about what I'm meant to do, or how I'm meant to act.
Another way of looking at it is to imagine social interaction as a biology test: I'm not naturally good at biology, but after a lot of revision, I do as well as people who are naturally gifted at this. It just takes more effort. Sometimes in exams I'm tempted to write an answer from a different standpoint, but that would lose me marks. Similarly, I'm sometimes tempted to give in to my traits (e.g. flapping, rocking, freezing), but I don't since I know it's not generally acceptable in a social context.
I sometimes think that in my case, 'overcoming' Asperger's is just acting: how much of what I do is 'me', and how much is just a script that I've pieced together? Are the two different in my case?
This is something that I wholly identify with. I do empathise with people, and I do care deeply. The truth is, though, I have had to learn this. I remember being frustrated when I was younger that I couldn't 'click', and confused that other children knew how to interact even though there wasn't an instruction manual on what to say and how to act in different situations. To the other children who accused me of staring: I was trying to see what you were doing, and hear which words you used, so that I could use them too. Even now I sometimes pay extra attention to the words and expression someone uses, so that I know what's appropriate and what's not (I hope that I'm not making this too obvious, though!).
Imagine that you're in a play. You're given a character and some scripts to learn. After a while you can repeat the words back flawlessly, but you're told that your character needs to stop sounding like they're just reciting the script. You need to 'become' the character, and eventually after much practice you can accurately show the character's emotions, so much that you can even imagine what they'll say or how they'll act if you're given a different script to learn.
Now imagine that you're given this character, but you're not given a script. All of the other cast members have scripts, yet nobody has a spare to lend you. You watch the other actors, unsure when it's your turn to act or speak, and you keep coming in in the wrong places, saying the wrong things. When people prompt you, you improvise, which sometimes doesn't work and just leaves everyone feeling embarrassed. On occassion you're told that the words you've come up with don't match up with how your character's meant to act and feel, but the behaviour that you feel fits the character doesn't fit in with the rest of the play. Sometimes you find someone's script and can see a few lines of what your character's supposed to say: when you use these words, however, you're told that your character needs to stop sounding like they're just reciting the script. Eventually you start getting to grips with things, and even though you don't always know what the script says you should do, you learn what's appropriate for the character to say and do.
Now imagine that life is this play, that the people around you are actors, and that you are the one without a script. This is how I often feel: even though I often talk and behave 'correctly' (or so I like to think!), social interaction and behaviour still don't come naturally to me, and sometimes there are moments when I take a few seconds to think about what I'm meant to do, or how I'm meant to act.
Another way of looking at it is to imagine social interaction as a biology test: I'm not naturally good at biology, but after a lot of revision, I do as well as people who are naturally gifted at this. It just takes more effort. Sometimes in exams I'm tempted to write an answer from a different standpoint, but that would lose me marks. Similarly, I'm sometimes tempted to give in to my traits (e.g. flapping, rocking, freezing), but I don't since I know it's not generally acceptable in a social context.
I sometimes think that in my case, 'overcoming' Asperger's is just acting: how much of what I do is 'me', and how much is just a script that I've pieced together? Are the two different in my case?
Sunday, 29 May 2011
Touch: A brief note
A lot of people with autism/Asperger’s can’t stand being touched. In some ways I’m like this: whenever my Mum or her friends attempt to do massage on me (Mum’s a holistic therapist), I get an uncomfortable feeling that’s as intense as pain, but which doesn’t hurt. Earlier I had a poke war with a friend: I was fine when she poked my shoulder, when she poked my tummy I had the ‘intense discomfort’ feeling and had to suddenly ask her to stop.
That’s not to say that I don’t like being touched at all. I really love hugs: I joined the ‘Free Hugs’ society at my university as soon as I knew it existed, and spent one afternoon with the society hugging random strangers. I love to hug my friends when I see them - something about the pressure of a hug, and the happiness of being with a friend, make hugs wonderful.
Thursday, 26 May 2011
We are not the same
When the book ‘The Curious Incident of the Dog in the Nighttime’ first came out (the main character, Christopher Boone, has high-functioning autism), I was glad. Finally, autism was getting acknowledged, finally people would begin to learn, begin to understand.
Turns out that I was wrong, though. If I had a penny for everytime someone said “Oh, so your brother’s autistic, is he good at maths then?” I’d certainly be able to buy myself something nice. Or “Oh, you can’t be autistic, you don’t see people as objects”. I had a doctor tell me this once; another time my CBT-practitioner asked if I have friends, and when I replied that I do, he said that I was unlikely to be autistic.
So, it seems that there are some misconceptions about what ‘all’ people with autism and Asperger’s have in common. I’m not a savant, like Rain Man. I don’t see people as objects, like Christopher Boone, or like Linda Freeman in the film 'Snow Cake'. I don’t have a meltdown if I don’t keep my schedules to the minute, like Jacob Hunt in ‘House Rules’. And even compared to the people I personally know with autism/Asperger’s/suspected ASD, we’re all different to each other.
One person commented to me that people with autism have no capacity for love. Let me get this straight: I can love. I love my brother dearly, I love my parents, I love my friends, I love my pets, I loved my ex-boyfriend, and I love God. I feel these kinds of love in different ways, like any ‘normal’ person. My diagnosed friends and family members can love, too.
I’m not sure where I’m going in writing this. I guess I just wanted to clarify that having autism and Asperger’s does not mean that everyone with this diagnosis/suspected condition is the same. ‘Normal’ people are different to each other, so why the assumption that all autistic people/Aspies are ‘good at maths’ and ‘completely egocentric’ and ‘unable to love’?
Monday, 23 May 2011
Amélie (2002)
“(Amélie) cultivates a taste for small pleasures: dipping her hand into sacks of grain… cracking créme brulée with a teaspoon… and skipping stones at St. Marin’s Canal.”
I first watched Amélie (a 2002 French film) when I was 14, and loved how the small things were taken into consideration. This line just summed it up for me: sometimes all one needs to be happy is to plunge a hand into a sack of grain and feel the small pieces trickle over skin, or to watch a dessert splinter delicately as it’s broken by a teaspoon. I tried to explain this to Mum at the time: she looked confused, and had her ‘Right…whatever you say…’ expression on, so I stopped saying anything for the rest of the film.
I’d forgotten about this until yesterday, when Cat and I were talking about Amélie. I wonder now if Amélie has Aspie traits, although it could’ve just been her bizarre upbringing that made her ‘odd’. I added that it felt great to pour grain/rice/raw broken pasta over hands too, to feel it run between fingers. My brother does that a lot: he shreds raw pasta into tiny pieces, then lets it drop slowly from his hands into a tray. Sometimes I put my hands into the pasta flow: for the two seconds or so before he pushes my hands away for being in his personal space, it feels amazing in a way that’s difficult to describe. (Except when the pasta touches my nails: that feels horrible, as though they’re being scratched.)
In a way, I’d forgotten how good things like this feel: I’ve tried to be ‘normal’ and in doing so, have stopped doing these. Now I’m tempted to go back to doing things like this: okay, so a lot of people might not understand what pleasure I get from pouring rice grains over my hands, but since it does no harm, why shouldn’t I?
Tuesday, 17 May 2011
I am who I am
Last week I started ‘coming out’ as an Aspie. And you know what? It felt absolutely great!
It started when Liz was walking to campus with me one morning. We were chatting about general stuff, then about my issues. I told her I was depressed and likely to be Aspie, she said “Okay” and advised me on finding a good doctor to do a diagnosis. So that was encouraging.
A few hours later I was talking to Sally and about how varied Asperger’s is (we were touching on it briefly in lectures that day), and I mentioned that I was different to someone else I know with Asperger's. “Oh, are you Aspie?” she asked. “Undiagnosed, but I think so.” “Ah cool,” and then we kept chatting.
Jen said “Oh okay” when I briefly mentioned it, and I got a similar response from Amy. I’m talking to Cat a bit more about how I feel about my ‘traits’, and I think it makes sense that I’m Aspie.
To be honest, I’m relieved that my friends didn’t automatically say “No you’re not”, like some doctors and therapists and clergymen have - the fact that they seem to accept the possibility without making it an issue makes it seem more ‘real’ to me, but in a really good way.
I’ve also started letting a few more traits show: the other day I was walking past a row of trees, and felt such joy in running my fingers along the branches, feeling each individual leaf on my hand (admittedly pulling out the thorns later wasn’t such fun, but it was worth it). Another time I felt like freezing when I was walking home, so I did. There were no cars or people about, and it just felt so peaceful to ‘be’ there in the moment, just standing frozen in place. I’m no longer trying to stop myself from flicking my fingers together when I feel like doing so - if my actions don’t harm anybody, why should I try and change?
Admittedly I’m tempted sometimes when talking to somebody to look away or change the subject or walk away for a bit, but I won’t do those things - to not control these impulses wouldn’t be fair.
So… I’m still on a 5-month waiting list or so. I’m happy enough in my skin at the moment, I think I’ve accepted myself as an Aspie, and it means the world to me that my friends seem to be doing so too.
Wednesday, 11 May 2011
Assessment History
The day before yesterday, Mum told me about her attempts to get me diagnosed in the past, and her thoughts on why they were unsuccessful (this comes as a result of me telling her about the GP who thought that I ‘wanted’ Asperger’s so that I’d fit in with my family).
So there’s me as a toddler, slow to speak and not interacting well with other children. Mum and Dad take me to a doctor, at one point autism is suggested. Mum’s thoughts on autism at the time (this is early 1990s) were either Rainman savants or people who got locked up in institutions, so she was reluctant. Still, they went to an autism specialist: by this point I’d gone to an osteopath and was on a strict diet regime, and was apparently playing relatively normally with my cousin. So Mum argued then that I was most likely normal, and a note went in my file to say that I was ‘eccentric’.
Time passes, and it’s noticed that I don’t initiate play successfully with children. I am, however, shown to be good at mimicry, so as a toddler I could play with someone else. When I started primary school, it was picked up that while I was getting fantastic grades, I had no friends, and was being bullied. Mum went to the teachers and asked them to speak to my classmates, so for a week I’d have friends until they grew tired of me. I played imaginary games, or would read during breaktimes. My parents still wondered if I had autism, but by now my brother had been diagnosed with severe autism, so that was their priority.
More time passes, and for some unknown reason (unknown to me, or my parents, or the doctors), I have a nervous breakdown when I’m 9. I get a lot better after 6 months on meds, and I see a psychologist four times. Again the issue of assessment is brought up, and I’m given tests and observed at school. While I performed too well in the tests to be considered ‘normal’, my teacher’s report and the observation from a day at school make me appear normal.
“Why?” I asked Mum at this point in the story. She explained her thoughts on this: the teacher had received advance notice that the psychologist would be coming, and for some reason during that week and the week before that, some girls miraculously took a shine to me and let me be their friend. Mum reckons that the teacher had told them to be nice to me, so when the psychologist came to observe me, she saw me being accepted by peers. “Why would he do that?” I asked. Her thoughts as a teacher were that since I was outperforming everyone else in the school, I brought up school ratings, so if I were diagnosed then there was the fear that I’d be moved to a different school, and they’d lose a good pupil. Mum said that she thought this likely, since that teacher tended to be a layabout who’d say that everything was fine (I was bullied for nearly two years everyday, he never said a thing until Mum went to see him) - he got sacked when I was 10, we’re not sure why.
Anyway, after that assessment, once I’m back to ‘normal’ after the breakdown I stop seeing the psychologist and stop taking meds, and a note goes on my file to say that I’m ‘borderline-autistic’.
I started at secondary school when I was 11, and I made a friend. By the end of that first year, we were a group of 4 friends. I still didn’t interact well with my classmates, but I wasn’t too weird either. By this point Mum had tried and failed to get me into social-skills classes (they insisted that she come with me since it’s a family activity, she insisted that she couldn’t since there was nobody else to care for my brother), so she gave me many lessons in maintaining eye contact, and appropriate topics of conversation, and telling white lies. At the end of the year, Mum’s called in to see the head of pastoral care, who’s noticed that I seem a bit ‘odd’ and stare very intensely at people. By this point, given that I have no diagnosis and Mum wants our issues to be kept behind closed doors, she gives the set answer: “She has an autistic brother, she must have picked up traits from him”.
I go through school, still feeling a bit strange and unable to click, but having friends. I found the reports from my assessment as a toddler when I was 14: that explained some things. I never told anyone else, since we were having some family troubles with my Dad and brother at the time. But from then on, I wondered if I was autistic. Reading books - fiction and non-fiction - introduced me to Asperger’s Syndrome, and I could identify with a lot of the feelings described in the books.
I finish school and start sixth form college, and then things finally start clicking into place. By the time I start university, I feel more comfortable in the world, and feel more able to interact with it. I go to university and instantly make friends - I’ve lost friendships too, but that’s a sad part of life. My friends are a mixed bunch, and we’re all accepting of each other for that.
Which leads me to the present day. 20 years old, wanting to find out where I fit into the world, and part of that, for me, involves learning why I sometimes don’t fit into the world. Getting assessed would help with that, I think. Plus this time there’s more knowledge and awareness of Asperger’s, less shame, and so much more acceptance. So maybe I’ll get a more unbiased assessment this time. And hopefully an accurate one that’ll make me feel more at one with myself (I am aware of how hippy-ish that sounds, but that’s the best way that I can currently think of phrasing it).
Thursday, 5 May 2011
Gift?
Earlier, Mum said that she thinks that having Asperger’s is a gift. With that, one can be a genius, one can know so much, it’s something special. I asked her if she thought that feeling like you’re in a bubble, if while listening to someone all you can hear is jarbled sound, if you want to talk but the words get caught somewhere between your brain and mouth, if those were gifts. She said no. So then, I asked her, can Asperger’s be a gift? I have good days when I’m ‘normal’. I have great days when I can absorb knowledge more easily, and can use it well. I have bad days when my traits show, or when I feel trapped in my bubble. Bad days are the main part of the ‘gift’, so to me this is not a gift at all.
Wednesday, 4 May 2011
Knowing
Earlier I was talking to Mum about prenatal testing - Cat had found a blog post where an autistic woman learned that her parents would have aborted her if they’d known she’d be autistic - and what she would have done if she’d known that my brother Christopher, who’s severely autistic, would be the way he is (don’t fret, we love him dearly, he’s my best friend in the world).
Then Mum asked me if I’d thought about getting myself assessed. I asked her why, she said that it would be useful, since Dad had lost out on promotions at work due to his social difficulties (he has Asperger’s), and she didn’t want me to go through that since, as she put it, I can sometimes take things the wrong way or offend people.
There was a part of me that felt hurt at that, I have to say. I do my best to not offend people, and I was sure that I hadn’t offended anyone unintentionally for a while. She disagreed, which made me feel a bit anxious - I’m told I’m polite and friendly by my friends, so to be told by my mum that I can be hurtful, hurts.
Now I’m catastrophising, methinks. I sometimes have depression spells, part of which involves making things seem worse than they are. I wonder if I’m doing that now, but that doesn’t make me feel any better, no matter what the CBT person I see keeps telling me.
Anyway, I told her that I had asked for an assessment, but that it would take about 6 months before the psych. clinic even got back to me (true). I was in a minor state about asking for an assessment, one reason being that I didn’t know what Mum would think. She’s tried to raise me to be normal, has emphasised the importance of my being normal while encouraging tolerance of others (how does this work?), and has scolded me many a time when my traits show. I think the last time I had a really noticeable trait in front of her was a few months ago, when she insisted on cutting my hair, and I cried because I didn’t want it to be touched. Sometimes her fingers on my skin make me feel something like pain, even when she’s just resting her hand on my shoulder - she’s a massage therapist, almost every time she gave me a massage I’d cry and writhe in agony (she got the hint after a few months, much to her dismay and my relief). But that’s going off topic.
So now she knows. And she seemed okay about it. Then she talked about how it would be good for me to have a statement, to show others that when I’m having a bad day, it’s not that I’m a rude person. At this point I was hurting, so I asked her if I could go, then spent the rest of the afternoon in my room half in tears and half trying to focus on my essay.
It’s weird, I’ve just spent the last month volunteering for a non-governmental organisation in Peru, and over there I felt fully ‘normal’, not feeling any traits or any depression spells. And I’ve been back home less than 24 hours, and this happens. I don’t know what it means.
Sunday, 1 May 2011
Traits
While I’ve not actually been diagnosed with autism (my last assessment of ‘borderline’ was over ten years ago), there are some ‘autistic’ traits that I believe I have:
Rocking
Flapping
Echolalia
Having the desire to be in a corner
Sometimes not feeling able to/wanting to speak
Feeling like there’s a glass pane between me and other people
Unable to listen to conversations right in front of me - background noise is too strong
Lining things up so they have a pattern
Staring at oddly-shaped objects/patterns, examining them really closely
Clicking my fingers while unaware
Being apprehensive about meeting new people
Running my hands/feet/face over different textures
Sometimes just wanting to do something ‘not normal’, e.g. earlier I walked past a row of stalks and just wanted to crouch in them, to feel them brush.
Since I was small, I’ve been strongly discouraged from doing these things, and I very very rarely indulge myself. But say a few minutes ago, in my room alone at 2 in the morning, I rocked. And it did feel good, in a way that’s hard to describe.
That said, here’re some traits that I have that seem ‘unautistic’:
I always make eye contact
I have an active imagination
I can tell lies
I really do feel empathy and sympathy
I see people as people, and appreciate their thoughts and feelings a lot more than my own
I like new places
I get along well with new people
…but I remember being taught about eye contact, about relating to others, being encouraged to be creative. These things come naturally to me now, and they’re part of who I am, but I sometimes wonder if this is just because the lessons have been drummed so hard into me.
Story short: I saw my GP, and told him that I wanted an assessment, to see if I’m on the spectrum. I was talking about this with Cat the other day, we talked about whether I’d want a diagnosis, what it would mean for me, if things would change after, what I’d think/feel if I was diagnosed as non-autistic. I mean, some days I’m absolutely fine and can get along as well as the next person. And some days I feel the glass pane there, and I can’t find words that’ll make sense, and conversations become a blur of noise. I don’t know why this only happens sometimes, though. I’m rather confused as to what I should do. Sometimes I think “Yes, I’m autistic and don’t really fit into the world in the way that others seem to do”, and other times I think “I’m fine, I’ve adapted to the world well and can live a good life in it”.
Just what am I?
Rocking
Flapping
Echolalia
Having the desire to be in a corner
Sometimes not feeling able to/wanting to speak
Feeling like there’s a glass pane between me and other people
Unable to listen to conversations right in front of me - background noise is too strong
Lining things up so they have a pattern
Staring at oddly-shaped objects/patterns, examining them really closely
Clicking my fingers while unaware
Being apprehensive about meeting new people
Running my hands/feet/face over different textures
Sometimes just wanting to do something ‘not normal’, e.g. earlier I walked past a row of stalks and just wanted to crouch in them, to feel them brush.
Since I was small, I’ve been strongly discouraged from doing these things, and I very very rarely indulge myself. But say a few minutes ago, in my room alone at 2 in the morning, I rocked. And it did feel good, in a way that’s hard to describe.
That said, here’re some traits that I have that seem ‘unautistic’:
I always make eye contact
I have an active imagination
I can tell lies
I really do feel empathy and sympathy
I see people as people, and appreciate their thoughts and feelings a lot more than my own
I like new places
I get along well with new people
…but I remember being taught about eye contact, about relating to others, being encouraged to be creative. These things come naturally to me now, and they’re part of who I am, but I sometimes wonder if this is just because the lessons have been drummed so hard into me.
Story short: I saw my GP, and told him that I wanted an assessment, to see if I’m on the spectrum. I was talking about this with Cat the other day, we talked about whether I’d want a diagnosis, what it would mean for me, if things would change after, what I’d think/feel if I was diagnosed as non-autistic. I mean, some days I’m absolutely fine and can get along as well as the next person. And some days I feel the glass pane there, and I can’t find words that’ll make sense, and conversations become a blur of noise. I don’t know why this only happens sometimes, though. I’m rather confused as to what I should do. Sometimes I think “Yes, I’m autistic and don’t really fit into the world in the way that others seem to do”, and other times I think “I’m fine, I’ve adapted to the world well and can live a good life in it”.
Just what am I?
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