Talking about my phone anxiety in the last post... I'm leaving you here a great talk about anxiety by Sarah Hendrickx. It's a talk for educators, but she puts things very clearly and it's wonderfully recognisable (even if it's about anxiety).
I have been very anxious the past few days, my heart beating faster than ever, not being able to concentrate or sleep, feeling like crying one moment and overly excited about something small the next. Why? Because on Wednesday I got an e-mail: "Can you please send me your phone number, I need to talk to you." Nooooooooooo!!!
I have a severe case of phone phobia, the fear of having to talk on the phone. Phone phobia is very underrated, and yet I know several people who don't like to talk on the phone. But what is it exactly? Phone phobia is often associated with social phobia or social anxiety, something I think more autistic people suffer from. It is also associated with the fear of speaking in public, which is actually something I have no problem with, because monologuing is one of my favourite things to do, and if there's a public to listen to my monologue, even better.
What are the things that a phone phobic (autistic) person fears?
What are common symptoms or reactions for people with phone phobia?
So when I got the e-mail, I waited with my reply until late in the evening so this person wouldn't call me that same day. But then of course, I was anxious all next day, switching off my phone when I was at work (even though I said not to call those hours). And he didn't call. Another sleepless night. Next day, he calls when I am in the kitchen and I don't hear my phone. I see the missed call about 15 minutes later, but of course I don't call back. Two hours later I send a message, asking if he can call back after 6 p.m., so I can be prepared. 6 p.m. goes by, 7 p.m. too, and just when I'm starting to relax a bit, opening my window, helping my roommate with a computer thing: Boom. My phone rings. I gather all my courage and answer the phone.
The reason this phone call made me extremely anxious is that I don't know this person very well, and he is quite assertive, and that makes me scared of not knowing what to say or agreeing to something I don't agree with. But I definitely have phone phobia, and not just phone apprehension. When I talk with my mother on the phone, we always agree to call by message first. I think my mother is the only person I'm not really afraid to call, maybe because she has phone apprehension herself and both of us are not really comfortable calling. My father doesn't have this problem, so when he calls I often don't take the phone, because I'm not prepared. I usually send him an e-mail later saying I wasn't home but I saw he called, and proposing another time to call or just writing everything I have to tell. I also never call him back, because 'what if his girlfriend picks up?'. Then I would have to talk to her and I don't feel comfortable to do so.
My boyfriend and me had a long distance relationship for the first year. We talked on the phone every evening. But we would always send messages first. In the beginning it was horrible for me. I didn't know what to say. Some days I would just be in silence the whole time. I didn't know how to say goodbye. But I learned a lot that year. Now we are closer but he still calls me every evening we are not together. I've learned how to end the conversation, and how to keep it going. But when he calls at a different moment of the day I have to take a few breaths before answering.
"The only way to get rid of phone phobia is exposure." Sounds simple. I thought I worked on it last year, when I was trying to find a flat and had to call a lot of housing agencies. But when you don't keep working on it, it just comes back. If I really do have to make a call, I will prepare everything I have to say and ask and write it down. Often even writing down the begin and end formula. And I will make sure that I'm in my room, windows closed, no distractions, and taking one of my homeopathic (valerian) pills (usually one a while before making the call, and one after). Preparing for a phone call can take hours or days.
I am glad I don't have anymore calls planned in the near future, so I can relax a bit over the next days. I won't leave you my number, but please tell me about your phone problems in the comments.
As I've said before, I have no problem with self-diagnosing autism as long as it is well researched, probably because I myself am self-diagnosed. Now, when mentioning to someone that I am self-diagnosed I always feel the need to defend my statement by adding that I worked with a psychologist last year around anxiety problems and even though she wasn't qualified to make an official diagnosis, she did acknowledge that she agreed with me.
But this is exactly what is wrong with the world! Why do I even have to defend myself?
Well, I should say that maybe that's because I don't seem autistic. I don't act autistic. At least not in front of people. Last week I had house guests and I had no problem acknowledging to them that I am intellectually gifted (also not officially diagnosed, only acknowledged by certain professionals) when they saw a book on giftedness on my shelves. But when they saw the books about autism they assumed that it had something to do with my teaching.
When people ask me what autism is I usually start by explaining that intelligence is not a part of autism, even though the term is still being associated with low I.Q.. Then I tell them that there are three main problems in autism: communication and social behaviour, sensory issues, and need of routine, repetition and rules.
And this is usually where I have to start defending myself again. I tell them that even though I may seem to make conversation easily my social behaviour is autistic: I don't take initiative to start a conversation, I monopolise the conversation and compare every information the other person gives me to something I can relate to, I don't make eye contact, I talk too loud when I'm excited, I don't ask questions unless I remind myself to do so, and most of all, I don't know intuitive conversation. The problem is, because of my privileged brain I think everything through so fast that people fail to notice that I have a problem.
In both the communicative and the sensory field I've become a great actress. I rarely stim in front of other people and when I do I try to do it without anyone noticing. I take the sensory overload while I'm in public and then deal with the migraines, meltdowns and complete inability to function when I'm at home. If I'm in a very crowded situation I shut down, but people often don't notice because I always act kind of quiet in groups.
If someone notices my need for routines and rules they call it "a little OCD". But, in the first place you can be just a little OCD, and secondly, the need of routine can be a real problem in autism, it is not just a variation on the norm. Even if I might seem to be okay with someone changing plans last minute it can make me unable to do something else, because that wasn't planned. But of course, other people don't see that. The don't know I hate to borrow my second ballpoint to them because what will I do if the first one breaks.
People don't see my autism. They see a young woman who's a bit shy. She might act a bit weird, but that's probably because she from another country. And hasn't everyone got some strange habits?
I hate having to defend myself because autism is not a visible condition. I should get an Oscar for my 24/7 acting ability. For not starting to cry when someone accidentally brushes their hair against my hand on the bus, for saying 'go ahead' when people ask to borrow my stuff even though I'm tearing up inside, for saying it's okay people stay over and then having horrible anxiety and needing medication to sleep and cleaning the toilet every time you use it because some strange person used it.
I may not 'look' autistic to you, but I am. And if I have to explain you why than you are just ignorant (and to think you don't even 'look' it).
I deeply regretted hearing a few days ago that neurologist and writer Oliver Sacks passed away. I got to know his work when I first read Musicophilia, a collection of real life stories about extraordinary effects of music. Now, I know that he also did an extensive piece on Temple Grandin in An Anthropologist on Mars, but I would like to show you a video in which he (and others) talks about prosopagnosia, and about his own experiences with it (he had very severe prosopagnosia).
Sensory Processing Disorder. You have probably heard the term before. Usually it goes in combination with pictures of sensory bottles, thinking putty, whirl-around gifs. Furthermore, there is always a mention of sensory rooms. Unfortunately, the more-than-known articles I'm speaking about are, in my opinion, usually about sensory seeking people. I myself am (in most cases) a sensory avoider.
When I was little I didn't want to walk on the sand when at the beach, when I got my hands dirty I would run to clean them and I still do. I didn't wear jeans for most of my life because they made me feel itchy. When someone strokes against me on the bus I have to start stimming heavily in order not to cry. I can't go to the cinema because surround sound makes me nauseous. As a baby I would play with my feet or I would take of my socks over and over again; the toys stayed untouched and if I ever used one it needed to be safely stored right away when I finished. I'm still a stickler for organisation and need my things a certain. Imagine living with two more people and having a meltdown every time they do the dishes and place the things in a different way (I'm not even talking about they fact I often have to rewash because I think it's not clean enough).
I wasn't always this organised. When I was about 8 I was the messiest person you've ever met and I couldn't have things put away because I wouldn't find them. Maybe things started to change when I was 12 and sat on my retainer... I've also always been quite insensitive to pain. Not seeking it either, but I never notice cuts and things like that. Unfortunately that doesn't count for my migraines when I have sensory overload.
Touch is especially difficult for me. I don't like to shake hands and kiss or hug people. Only my boyfriend I trust enough to give me pressure hugs. My clothing has to be tight some days and loose on others, but always made of natural materials like cotton. I always wear the same brand and model of underwear, and its all cotton too. I don't like water on my skin (or anything, for that matter). I don't like to take showers, and luckily I'm not a heavy sweater. My showers are written in my agenda so I won't forget them on purpose. I also get allergic skin reactions to anything you can imagine: any type of body or face cream I use I have to changed after less than a year and any ointment for medical use (even homeopathic ones) I can only use for a certain time before I start have reactions to it in the form of rash, redness or heavy itching.
What else.... Sensitivity to noise: I often put on music with headphones when on the street because everyday life has too many different sounds. However, headphones hurt me, so I can't wear them for too long. I can't wear headphones that cover my ear either, no noise cancelling headphones are not an option for me. Sensitivity to light has always been my biggest problem. Fluorescent light would give me headaches and I would wear sunglasses even when it was raining and even inside, until I got tinted lenses. I don't have prescription lenses or anything, just normal plastic (I don't need glasses to see better) which is 18 percent coloured. Kind of like sunglasses, but you can hardly see they're coloured. Since I got my glasses, I'm handling light input a lot better and have less headaches. I don't always wear them, although I have them with me at all times, in case things get too much. But they helped me to reduce light input.
I should also mention that anything makes me nauseous. Looking at people spinning makes me nauseous. Car, bus and train rides, playing on the swing, watching a movie with a lot of camera movement, rides in amusement parks,... Including those gifs that some people find so soothing and the glitter in those sensory bottles.
So, if you know someone with sensory issues, don't automatically assume that they will like stimming toys or texture books. Think calm, neutral and natural.
At one point I asked myself if it was wrong to write about giftedness and Asperger syndrome when I'm actually not officially diagnosed. Here is why I think it isn't wrong:
My self-diagnoses weren't based on just one resource, but several ones of different nature. When using the internet as a resource I always look for confirmation of an information source by looking for a second, similar one.
When I started to suspect I might be gifted, I didn't know anything about it. I started reading lots of lists with characteristics and I took some free online IQ tests (although I currently believe that they have few value). When I started to accept the possibility of being gifted, I registered at a forum where I got to read more stories like mine and where I also got some confirmative answers on my story.
Then I went to see a gifted NLP coach for gifted and highly sensitive people and she also confirmed that she recognised my giftedness while I came to her with some problems and views that are typical for gifted people. She recommended me a few books so I could get more information. I contacted the author of one of those books because he wrote about some specific characteristics of highly gifted people (IQ of 145+). I recognised myself in his description but couldn't believe that I'd be that smart and still go unnoticed for so long. He told me that you are the person who knows you best and if you really recognise yourself in the description, than it is probably about you.
Getting a formal diagnosis of giftedness where I live is way too expensive (about €1000/$1300) and I would never do a Mensa test because I'm afraid of tests and I tend to fail or score much lower when there is time pressure and little sounds from other candidates that keep me from concentrating well. I therefore have simply accepted that my self-diagnosis is correct and I am indeed higly gifted.
Then one day I saw a link to the AQ test on a giftedness forum. People where mocking the test, said that it was in no way an indication of autism when you score high, and then proceeded to laugh at their 'high' scores of 20. I myself scored 34, and I accepted the possibility of having Asperger's as long as I didn't find anything that would clearly discart that possibility. I still haven't found anything.
I have taken other free online tests too. More extensive ones. And I keep scoring clearly in the Asperger's region. I started to read characteristics lists (although for Asperger's there are not as many systematic lists as for giftedness). I bought a book (Autism and Asperger Syndrome by Simon Baron-Cohen) and kept recognising myself in the descriptions. I introduced myself on a forum: same reactions as with the giftedness; recognition and confirmation by other Aspies.
I talked about it with my partner, and even though he laughed and joke about it at first he now also says that if this self-diagnosis seems right to me, it probably is. We went over the Spanish Wikipedia page on Asperger Syndrome and with each characteristic I told him a story about how I thought that one related to me. This self-diagnosis won't change me, I am still the same person. But being able to explain all my quirks and even having someone backing me up and having lots of patience with me, makes me more confident.
We are now two years later, I've read a lot more and I am completely sure I am autistic (yes, you know, in the meantime the terminology changed, so I've even learned to live with that). It helps me to solve everyday problems and to be more at ease with who I am. In the beginning I thought I needed real professional confirmation, but I don't. I needed confirmation from myself.
I think it is completely acceptable to self-diagnose a condition which needs no medical treatment if that helps you explain and accept who you are, as long as you are thorough in your research: lots of double checking and using different sources (books, internet, forum, coach).
On the "Terminology" page I wrote a short paragraph on prosopagnosia or faceblindness. The other day I was watching some YouTube videos on prosopagnosia and I only then realised how awful it must be if you can't even recognise your own family members or yourself.
I myself don't have such an extreme case of prosopagnosia but I do struggle with recognising faces and rely a lot on other characteristics like hair style or colour, clothing, voice, the place I meet them, ... For example, I can recognise without problem a bunch of the people that take the same bus as me everyday. Non of them by their face of course. But if I meet them at, let's say the supermarket, I'd probably have no idea they are the same person.
I find it really difficult to see the similarities between siblings. I wouldn't say I'm unable to see any similarities, it depends on how well I know these people and what situation I'm in at that point. When my flatmate brings home friends and I'm working at my computer in my room I will get up and say hello. But I'm usually still concentrated on my work, so the next morning I find a stranger in my kitchen. Or maybe I've even met them before but they look like completely new people to me.
The first time I had to teach a group class (10 students) I had to ask them to always sit in the same place, because otherwise I would mix them up. I'd learned the order they sat in by heart and whenever they changed places I would often get confused and call them another name.
Would you be able to describe what shape your mother's face is? I certainly can't. I also can't recognise my friends on pictures if they're not taken frontal. And my boyfriend stopped shaving off his beard because whenever I saw him without a stubble I would have trouble recognising him and wouldn't want to touch him. I am also completely unable to describe his face, I prefer hearing his voice over looking at his picture.
Do you know those to actors, Javier Bardem and Jeffrey Dean Morgan? I have no idea how to see the difference between them. I guess to people with very strong prosopagnosia the whole world looks like Javier Bardem...
We autistic people like to meet 'people like us'. So if you surf the web you'll find blogs claiming that this or that tv character is autistic. It doesn't matter if they are meant to be autistic, it is just nice to see find some neurodivergent characters to which we autistic people might relate in some ways. These are my favourites:
Staying on the subject of Sherlock Holmes there is an article of the Davidson Institute in which a form of extreme giftedness is described. They compare the different levels of giftedness with characters in the books of Sherlock Holmes:
"Analytical Inspector Lestrade would solve the case step by step with concrete evidence. Dr. Watson would appreciate clues which had obvious and non-obvious connections to one another and synthesise abstract clues. Sherlock Holmes would find and generate clues which he could hypothetically integrate to solve a crime. Holmes was an interesting mixture of brilliant analytical skills and synthetic ability which enabled him to perceive the minutest details, assign proper weight to each, and to integrate these into a large-scale picture of the entire situation. For us, Inspector Lestrade is of normal intellectual ability, Dr. Watson is of the moderately gifted level, and Holmes is extremely gifted."
I, being gifted myself, relate a lot to this description of the original Sherlock Holmes and will definitely mention him again sometime. Being both gifted and autistic I like to analyse how giftedness and autism influence each other. A great book on this subject is 'Different Minds' by Deirdre Lovecky, which I will comment on more in the future.
Page 1 of 365. A New Year with a brand new website. The year of Me. In 2012 that I hit rock bottom but I climbed up a long way since and I'm still climbing. Learning about my autism has made me understand and help myself. I've grown a lot and will keep doing so in 2015. Before starting this new book, let's take a look at the old one. See here my year 2014 summed up in 20 questions and answers:
1. What food did you eat most often this year? Potatoe chips. They’re great for getting my blood pressure back up although usually I eat them because I crave carbohydrates. Can’t help it…
2. What grossed you out this year? Other people’s mess and dirt. It took me a week to clean my new appartement just to make sure I erased any bacteria the former owners might have left. And when my roommate does the dishes I often do them again when she doesn’t notice, especially the glasses.
3. What was your go to stim? I still bite myself when I’m anxious and I pinch myself when I’m getting angry but I’m doing it less often. I don’t think I have any happy stims, at least not any that I’m aware of.
4. Did you change any habits/or switch routines this year or stay the same? I changed appartements because of problems with my roommate at the old one. I did the transition in small steps so it wouldn’t be traumatic. Then after, when shool and work started I was a bit off for some time but I soon found my sense of routine again.
5. Did you do anything that surprised your family or friends? I became guide and helper to the Erasmus students (luckily there’s only 4) because that way I am in charge of activities, I am the go-to person who knows everything, and it’s an easier way to make friends. So it seemed I was doing something social for once but actually I am just helping myself…
6. Did you do anything that surprised yourself? I started wearing jeans for the first time since I was three and announced that they were itchy and I didn’t like the feel of the texture. I now own three pairs and am getting used to the itching because its better than complaining how my cotton pants are too big or too old.
7. What was your favorite thing you learned? I learned to be a bit more assertive (even though I have a very long way to go). I learned that I don’t need a psychologist for this, as she told me the same things I can read in the books I bought. I am now able to ask for information or help in different situation (at least when I prepare myself and am not too overwhelmed at the moment).
8. Did you talk to anyone interesting? Most new people I met are interesting in their own way. But the interesting at the moment is this guy in my ethnomusicology class because he’s great at having discussions based upon facts and not on the will to have a discussion.
9. What was your favorite article of clothing? My T-shirts, which are all the same but in different colors, are an easy way to get dressed in the morning. But I also like my new winter wardrobe, my jeans, and especially the new long cardigans which I can rap myself in. And so on, and so forth, and what have you… Actually I had a great clothing year!
10. What was one thing that made you mad? A former roommate getting involved in some weird self-help thing. My current roommate reading an autists autobiography and then laughing about it with the other roommate without even considering that those things the author was talking about could’ve happened to me (they have heard I’m an Aspie but they don’t realise that that’s just what people say because it sounds better than autism). Those are two moments I pinched myself so hard I almost started bleeding.
11. What was one thing that made you really happy? To pass the musicology entrance exam. And I’m enjoying it a lot.
12. What was/were your special interest/interests this year? Same as always: music and books. But I now ‘specialised’ in Spanish children’s songs and starting with music psychology and changing from psychology books (autism, assertiveness, self-confidence) to musicology and classic literature.
13. What stim toys did you use? I love the magnetic spinning wheel: http://www.scientificsonline.com/product/magnet-space-wheel
14. Where was your favorite place to visit this year? I loved my walks to the beach this summer, especially those days there wasn’t anyone on the beach yet when I arrived.
15. Where did you spend the most time? In my bedroom, hoping my flatmate would leave so I could cook or do laundry without her giving me ugly looks.
16. What tv character did you identify with most this year? Brick Heck from The Middle. I don’t completely identify but I sure do like him a lot.
17. What show did you binge watch? Elementary, another relatable show. Gilmore Girls (again), Sabrina the Teenage Witch (again), Full House (again), Big Bag Theory (again) That’s what happens if you don’t have a tv.
18. Did you do anything new this year that you hope to do more of? I hope to not longer be the girl that always agrees, never complains, but never gets a single thank you. I said NO last week and I hope to do it again because even though I was scared, I felt good afterwards.
19. What did you do to help with meltdowns? If it was from being overwhelmed I would run and find a quiet place to sit, cry, and rock to calm myself down. I it was a depression melt down I would sit on my bed, eat chips and binge watch a tv show. And then there’s my enemy the migraine (a cocktail of sensory overload, stress and sometimes some hormones) which I had to fight a few times with pain killers to keep functioning when I didn’t have the option of staying in bed.
20. What song did you listen to the most? Always something else. Although I did notice not so long ago that Canto Ostinato by Simeon ten Holt is really soothing and relaxing. Probably because it’s minimalism (but also because it’s just really good). That’s why I have the music of Wim Mertens on repeat these days.