Twenty Fourth Entry

There’s this teacher in the musicology department that is extremely gifted. Always thinking ahead of everyone else. In the intelligence department he would me more or less my equal, with one small difference. I’d like my brain to work non stop 24/7 but unfortunately I have autism and after a certain amount of information my body (including my brain) just shuts down. The result is that I can’t accomplish quite as much as I would like or would be able if I didn’t have autism. Of course that would completely change who I am so I’d rather keep the autism.

Negative point in this man’s case is that he doesn’t exactly know how to channel his intelligence and does stupid things from time to time because he doesn’t consider the outcome of his actions. He likes to show off his knowledge and intimidate people (maybe he doesn’t do it on purpose). One of his ways to show off is talk. He starts talking and it sounds like a perfectly prepared speech even though you know he’s inventing it on the spot.

This morning there was a gathering at the conservatory with a talk from an ethnomusicologist that has done a lot of research in the area. So this teacher I was talking about introduces her, explains her investigations… Basically he did what he does best. He started talking and just couldn’t stop anymore. And then she said: “Can you stop talking? Because we are on a schedule here.” That comment made my day!

Twenty Third Entry

I got the strangest look from my teacher yesterday (introduction to etnomusicology) when I said I didn’t finish the article review. Strange because she was surprised. Out of four students in that class I’m the only one that’s always present, always punctual and always hands in the work on time. So of course there was no problem in being late this one time. But it surprised me that she reacted this way, as if, if I hand my work in late, something must be terribly wrong.

Yes, something is wrong, I have autism. I need structure and I need to do things the same way, always. Last weekend two friends of my flatmate, who were travelling and passing by to see her, were to sleep at our apartment. No harm in that. But eventually they stayed four nights, sleeping in in the morning, than taking time for breakfast… I could live with the one night of socialising when we all ate pizza together (even though they didn’t even offer to pay me back). But in the morning, when I have to study because I work in the afternoon, I can’t have them around. It’s already difficult enough when my flatmate practices for her singing lesson, not because of the noise but because she doesn’t do it every Wednesday, so it’s not part of my routine.

Now yesterday evening, relaxing after finishing my review, I was watching a Gilmore Girls episode (season 4 episode 6) where Rory has trouble concentrating on her studies because of her roommates making noise (though in this case probably not an autism thing). She can’t study at home either because her room is full of broccoli tarts and she doesn’t want to study on the couch. When back at Yale she finds the perfect study spot: a tree. Her own study tree. But then the next day someone’s stolen her tree (and is reading a magazine, not even studying), she gets very anxious because now she doesn’t have a place to study. In the end she bribes the guy who is in her spot with money.

Reading all this I just wrote it doesn’t make much sense, not the part of how I was unable to focus, nor the relation that it has with the Gilmore Girls episode. Maybe it just made me feel less alone in my worries. And it made me understand that I am blaming other people for my focus problem while I’m not even trying to resolve the problem by expressing my problems and asking for example if the guys could go out. Or go out myself, find my own study tree. I’m sorry, I’m just that stuck in my routine. But in the end I did manage to focus and write down my ideas in my review.tumblr_n2ommhUjMB1stncygo1_500

Twenty Second Entry

After more than a year I finally decide to get internet in my flat. I hope to use this event to make my blogs revive, starting with this one. A lot has happened to me over that past year. And especially over the last few months. After a bad experience with a flatmate who didn’t talk to me I decided to move. I now have my own flat with I could decorate the way I wanted. I bought myself a desk and some bookshelves, so now I’m more at ease studying.

I decided to be guide for the few Erasmus students we have here at the conservatory and two of them are living with me. I find it a nice feeling to have someone depend on me for a change and I’m glad I have some friends, at least for a while. My roommates figured out by themselves that I’m not complete normal, and one of the talked to my boyfriend, so now they now I have autism and they laugh (but in a good way) when before washing the dishes I start to put everything in it’s place and things like that.

Remembering conversations I had with some of you and reading about autism spectrum disorders and the new ‘rules’ in the DSMV, I’ve come to terms with the term autism, because I feel the main difficulties are indeed the same. However, when explaining it to other people, I keep on using the term Asperger’s Syndrome because it seems less frightening.

In summer partly because of the stress of living with someone who didn’t speak to me, I retreated from all human contact. I didn’t talk to my friends in more than two months. I also started having anxiety attacks whenever I was in public, and I realised that I needed to become more assertive. I took some sessions with a psychologist who made me think about the reasons I got stressed and how I could change my thoughts. That, in combination with reading books and putting myself to the test all the time, helped me a lot. I can now for example go into a shop and say hello to the attendant. I even dare to ask them for help (though it takes me time and a lot of courage). I feel I’m also improving my conversation skills and I’m more often able to engage in human contact and not obviously behave like an Aspie.

I do have days where I feel overwhelmed, were I started crying in the middle of a mall, where I keeping looking at the table in stead of at the person I’m talking to, or where I simply ignore other people because they make me feel like I want to run away. But I think I’ve come a long way and am learning step by step to survive in this crazy world.

Twenty first entry

Although it has been on my e-reader for quite some time, I just started reading ‘Different Minds’ by Deirdre Lovecky last week. That was, after I finished reading Temple Grandin’s books ‘Thinking in pictures’ and ‘The autistic brain’. On some points I found ‘Thinking in pictures’ interesting, but I missed a clear structure. Grandin talks and talks and talks and in the end I’m not sure what she’s said. ‘The autistic brain’ however was completely different, maybe because it was written much later. There was structure, there were straight facts, spiced up with many examples from Temple’s own life. I got some great information from the book, I know better how the brain works and that there can be a really significant difference between an autistic and a neurotypical brain. The book gave me insight in my own brain and why I do certain things.

But back to the actual point. ‘Different Minds’, a book about 2e children, giftedness in combination with a learning disability, focusing primarily on ADHD and Asperger’s syndrome. Being 2e myself, this book is a huge revelation. I’m finally beginning to understand my childhood, my reactions, my feelings. Lovecky describes how misdiagnosis occur: the giftedness can mask de Asperger’s syndrome (or any other disability), the disability (and don’t shoot me for this, I don’t think it’s necessarily a disability, but I need a word to describe the question) can mask the giftedness, or they can mask each other.

Obviously that last one is what happened to me. Lovecky also describes the different levels of giftedness and how Asperger’s occurs in gifted people and I distinctly recognize myself in the highest regions of giftedness. She also describes how the masking occurs and how gifted children use their intelligence to adapt their behaviour.

I’m going to continue reading now, I’m sure there’s a lot more interesting things to come. But let me say, having read a quarter of the book more or less, if you are looking for a book on dual diagnosis, especially Asperger’s and giftedness, I can highly recommend this one. It’s full of examples, case study, and explications of the different ways 2e children show their gifts and disabilities.

Twentieth Entry

I can’t deny it any longer…. I resemble my aunt too much…. I have developed a milk allergy. Not that the milk part is such a bad thing; I haven’t drunken milk (just soy drink now and than) in about 10 years. Than about 7 years ago I became a vegetarian (not for any moral reasons, just because I never liked meat), although I ate meat from time to time. Two years ago I started to have problems digesting yoghurt and I switched to soy yoghurt. Around the same time I stopped eating meat altogether, but I did eat a lot of cheese. I have always loved cheese. I especially like old cheese. But then I moved to Spain where there is not such a tradition of old (cow milk; out of habit I don’t really like goat or sheep) cheeses. When I buy ‘gouda semi-curado’ (which is totally wrong in the first place, because gouda is supposed to be only the cheese from that particular city) it tastes like a young cheese. When you buy a young cheese, it has no taste.

I’ve read somewhere that the more fat is in the milk product, the better it can be digested by someone who is sensible, which would explain why I would notice when my mother bought other milk and why I haven’t had much problems before (like I said, I ate mostly old cheese). But here I am, in Spain, where there is absolutely no cheese culture and I eat the best I can find.

Last summer I ate ice cream. I had a stomach ache the whole night and the next day I got a rash on my foot which lasted for two months. The doctor wouldn’t believe me when I said it was an allergic reaction and gave some cream that didn’t help at all. He took blood and tested for milk, soy and gluten allergy and said that there was now problem. Of course you can’t see an allergic reaction in my blood, it’s because in the first place I am already consuming less milk products and in the second place the anti-cells for casein in an allergic or intolerant person disappear around the age of three. The rash got worse with the sun, than it was just dry and finally it disappeared. But than I started consuming Spanish cheese in my salad, a cheese pizza (because that the only vegetarian one they have; even the tuna has bacon on it) and I got another rash. A circle on the sole of my foot (I should look up if that means something in reflexology). Which lasted… well, it’s still lasting; sometimes it’s just very dry, other times red and annoying. And I got a second circle of the same sort following a mosquito bite that won’t heal.

With the holidays and not being on my regular schedule and eating whatever I might have overdone it with the cheese… And yesterday I woke up with a light rash on my face. Red, a little swollen, irritated. So I go the pharmacy and I ask what I can do about this rash probably generated by an allergic reaction. First the woman tries to deny I my face is red. And she starts treating me like I’m stupid saying (like I didn’t know) that I simply have to stop eating milk products. As if that’s so easy. And of course I’ll have to take an anti-histamine. Any kind? Yes, of course, she says. And I explain that the last time it didn’t work. Well, than I should bring her the pills, or at least be able to tell her the name. Why I don’t know, given she’s just told me than any one will do. Maybe I should go do more allergy test and see a dietitian, I suggest. No worry, just take the pills, she says. And I say: thank you for the information. And I walk out of there in shock, starting to hyperventilate. And I start thinking about getting to rehearsal on time to take my mind of the evil pharmacist.

So here I am, with less rash today, but still hurt emotionally and nothing further in finding an acceptable solution for my allergy. I prefer the rash over not eating milk products, I now also prefer it over going to the pharmacist.

Nineteenth entry

I’m anxiously waiting for my classes to start on Wednesday. I hate not having anything to do. True, I could think of a lot of things to do, but I have no drive to do them. I need my routine to plan my tasks effectively. Only two more days; Wednesday at 9.00 I have my first class.

I had a small meltdown earlier. A friend wrote to me asking what I finally decided to do with my clarinet studies. Thing is I had a lot of problems with my clarinet teacher the past year and finally at the end of the year he failed me for my masters exam, even though he had never mentioned anything about this possibility neither longed for any changes in my playing or in my attitude. Long story short, communication with this person is Aspie hell because he never puts anything clearly. And having to explain my talk with him to my friend was even worse because it brought back the memories and some new insights.

Before, I didn’t see him as a bad teacher, nor a bad person, we simply seemed to have communication problems, something personal between the two of us which could happen between any two people who have to work so closely together. Truth is I’d never have chosen him a my teacher, he was kind of forced upon me when I got back from my Erasmus, while our old teacher had to retire.

I had problems with him from the first lesson on, even though I tried to be as open as I could to any change and I even changed my way of practicing and the idea of what I expected from a clarinet lesson. I was always complaining to my boyfriend, my coach, my friends, and they all said I should try to be flexible, relax, do my own thing and don’t pay too much attention to his remarks, don’t expect too much from him,…. Anything that might have helped me. I managed to be patient for about three months but after that I would be crying out of frustration after each lesson, even though I never showed it directly; I would go home immediately after class and sometimes I wouldn’t even leave my room the next day. That was my first conscious experience with depression meltdowns after opening the door to the basement of bad feelings of my glass house of which I talked in earlier posts.

After failing the exam I was asked to go with the head of department who explained more or less why they decided to fail me. I never got any commentary from the jury, which in my opinion would have been interesting because I absolutely didn’t see where the problem was.

My teacher didn’t even call me. I had to take the initiative and write him an email to which he replied quite shortly that we shouldn’t discuss those things over email, which was exactly why I wrote, insinuating that we should talk and leaving the rest to him, because I believed that was his task.

We got together for coffee and he started to ask about my emigration plans, which was the first time he ever asked me anything personal. Changing the subject to clarinet he told me he expected that he could make a list of people who graduate in his class and that all of those people would be able to replace him at any give moment as a substitution player in his orchestra. And that he thought I didn’t belong on that list and that he had the feeling I wanted too many other things to be absolutely sure I wanted to be on that list.

He was right about one thing. I don’t want to be on the substitution list, because I don’t like playing in a professional orchestra. There is too much competition; competition on who can play the most notes, because non of them ever seem to think. In my opinion the best orchestra players are those who are perfect at their instrument, but not at music. And if that’s what he wants, clarinettists in stead of musicians, than I’m out.

After thinking it through again I do think that he is both a bad teacher and a bad person. He accepts mostly students who already have a higher diploma and have had lessons with great teachers, so he can do as little work as possible and still have them show off in his name.

I’ve had a horrible year behind me because of him and I don’t want that to happen to other people (the friend who wrote to me should be graduating this year). I also think that the main problem isn’t him either, or at least not him alone, but a bunch of other people at the conservatory, including the ones who nominated him teacher, because they are also making other changes to the school which I think are very unfair and unjustified.

As I decided talking with one of my favourite teachers last week: conservatoria where once founded to keep orphan girls out of the prostitution and now they are f*cking with us anyways…

Bottom line is that I’m glad to be out of there. And I think I’m now in a better place; here at least the injustice happens to every student in the same amount because it is controlled by the government.

Edit: Note to those who are here to learn about Asperger syndrome: the situation must be very bad for me to use the above words (penultimate paragraph) even though I can’t decide wether I’m sad, angry, or disappointed. This not being able to name a feeling is called alexithymia, of which I have a relatively strong form (I guess) and some days I can’t even distinguish if I’m happy or sad.

Eighteenth entry

When I told my boyfriend I have Asperger’s syndrome (a few days after finding out myself) he reacted normal: if you think you have this and it helps you knowing this then that’s great. Then when we started going over the characteristics list that on Wikipedia he indeed recognised lots of things and he accepted it too as a part of me.

And know that we are living closer to each other and seeing each other more often he notices a lot of small things in me he didn’t realise before. And luckily for me he likes it and he is very understanding.

Like when we go shopping in a big supermarket and my mind kind of stops working because of the crowds. Or last week, when we went to buy a salad for lunch in a restaurant that he likes. Small, lots of people talking loudly, people coming in to order without standing in line, the three people preparing the food going from one place to another,… And then he noticed that I got really quiet and seemed to be disappearing to my inside world and he told me to go wait outside. Nobody ever noticed that before. I have the best boyfriend in the world.

Also, my apologies for not writing, I just moved to Spain, am still without computer and don’t have Internet in my flat…. Things might be a lot slower here than they were over the past month.

Seventeenth Entry

The next Aspie nightmare: shopping. I usually now what I want/need and where to get it. If I go shopping alone I can be done in an hour (unless I walk into the bookstore). No problem there. But then I have those stupid moments where I say yes to going shopping in a big city with my mum, sister, aunt, and cousin. Different people who want to see different things in the middle of even more people.

I’ve been desperately trying to find a pair of trousers for the upcoming winter, because I have one pair that’s almost falling apart, one that’s quite washed off, and two that are too big, especially since I’ve lost another few kilos due to stress the past year. The only problem is that the current trend in trousers are slim fitting trousers. Even the ones that are wider at the bottom are fitting around the upper legs (and most of the time still too big for my tiny waste). And where in summer it’s still quite easy to find trousers that are 100% cotton (I always buy the same basic model of the same brand) the problem with these fitting winter trousers is that there’s also elasthan in them, which is a horrible sensation even now when my skin isn’t winter dry yet.

I already started to be in a bad mood after trying on the first pair of these horrible trousers. I refused to try on any more. But then a few shops later I found the perfect skirt (cotton on the inside, two layers of swirling tule on the outside, and a comfortable high waistline) and suddenly I was jumping up and down with joy again. Then there was a great lunch, and knowing many more hours of clothes stores would follow, I decided to go of on my own and visit the book shops. I was able to relax again, even though the morning had already given me a headache.

We met again for coffee, which I needed very much. Sitting in a fairly quiet restaurant, not so much movement as in the streets and shops, and drinking coffee. Even though people tell me it’s strange, coffee helps when I have a headache due to sensory overload. And even more weird (but it has nothing to do with shopping), coffee helps me relax when I’m stressed out before an exam. It seems to give me a different kind of pep than I get from sensory overload.

Having seen the bookshops already, I stayed with the rest after coffee (which was already close to closing time). And then my sister and cousin decided to go into the worst imaginable shop for every sensitory sensitive person: Forever 21. My headache returned almost as soon as I walked into the store. Everything white, bright lights, full with cackling young girls, clothes unorganised everywhere (even worse than Zara), loud music. Those are the moments that I try to turn into myself in order not to have a meltdown, but this time it was extremely difficult. Another store I’ll never visit again. Luckily there is an establishement of my favorite sandwich and coffee bar on the way to the station, and the coffee helped me get home while behaving fairly normal. After that I slept for almost 12 hours, which is the double of what I normally need and don’t even feel completely recovered yet.

I think I’ll take another coffee.