Surviving a Cambridge Residential – Tips for managing autism and anxiety.

Recently I had the privilege of going on a two day, overnight residential visit to Trinity Hall College at Cambridge University, organised by my sixth form. When I received the letter informing me that I had a chance to go, I was both excited and nervous. On one hand, it was undeniably a great opportunity – a chance to go to one of the most famous universities, potentially somewhere I might apply to in future. On the other hand, it was an overnight stay in an unfamiliar place 4 hours away from home with unfamiliar people. In other words, an anxiety-inducing nightmare of a prospect, especially with me being autistic.

And yet, here I am. I survived! So here’s some of the strategies which I used to manage my autism on this trip, which helped me, and which will also hopefully help you, to not only survive the trip (or similar situations), but to come out the other side feeling so much more confident and capable in taking on new opportunities going forward. I’ll also be giving a run down of what happened on my trip, for any of those interested in what university residentials are like.

Continue reading

Volunteering at West of England Falconry Centre

Florence, the Burrowing Owl, in her aviary. (During my second week, Florence decided to attack my shoelaces and succeeded in shredding tiny holes in the bottom of my trousers – thanks for that, Flo.)

Given that I am someone who has zero aspirations to go into veterinary sciences or to work with animals, it may seem slightly odd that I decided to volunteer at a falconry centre. But (generally) I do like animals and this seemed a reasonable opportunity to do some work experience. As an aspie, it initially seemed a daunting prospect, what with my social anxiety, but I’ve found that it’s been an incredibly supportive environment and has been incredibly enjoyable.

Continue reading

Retrospective on The Guilt Complex

I posted The Guilt Complex in 2018. Here we are now in 2021, and I believe that with my few years more experience of living and existing and all that nonsense, I’ve come to have a bit more insight about my own emotions.

First of all, for anyone who looked at that post and felt that they experienced a similar thing – let me tell you right now: it gets better. I don’t know how, I don’t know exactly why, but let’s just say that maturity seems to be this intangible thing where one day you realise that actually your worth doesn’t depend on your always being in the right.

Continue reading

Eye Contact

Why do you find it hard to make eye contact?

See the source image

It just feels wrong. I wouldn’t say that it scares me, because it’s nothing like that, it just doesn’t feel quite right and makes me uncomfortable. Most of the time I don’t even realise that I’m not looking at people’s eyes until either I think about it or until they comment on it. What I’ve noticed some aspies, (Chris Packham for instance) and myself doing, is that sometimes we consciously make an effort to maintain eye contact. We hold it for a few seconds, really trying to do it, then our eyes drop again, and we go back to looking around. In Chris Packham’s case, I watched him on TV, and watched the way his eyes moved. What I feel when I’m in conversation, is just that there are so many things happening at once, it’s like I’m supposed to listen to what the person is saying, look at what their hands are doing, look at what their body is doing, look at what their eyebrows and facial expression is saying, work out whether they’re speaking metaphorically, with sarcasm or perhaps they’re teasing me, then I have to analyse it all and figure it out all whilst even more things are going on in the room around me that are far more interesting! And it all happens so fast! When I say this, I of course mean no offence. I am not saying that people are boring or anything like that, but what tends to happen is my brain moves way to quickly and before I know it my focus has moved on to a whole new subject. It’s way too much for my brain to comprehend, and so I just try to focus on one thing at a time, which often isn’t the words that are coming out of their mouth. This tends to give the impression that I’m not listening, or that I don’t care what’s someone is saying. I’ve heard some aspie bloggers saying that the reason they don’t like looking into people’s eyes is because they feel like they’re being judged, and that it feels eerie to be looking at someone’s eyes and not being able to tell what their mind is thinking. I don’t like being judged, (after all, who does?) but looking at people’s eyes doesn’t always make me feel that way, it’s just that indescribable discomfort. They also said that they have no trouble looking at people’s eyes when they are on TV, I find that I don’t have any trouble with that either. They said it was because the eyes they see aren’t ‘real’. The eyes on the TV can’t see me, and therefore can’t judge me, and they aren’t looking at me directly, just the camera. That fact makes me feel better, so I have tried to make eye contact with TV characters, and actually see how their eyes and faces move in detail, but I still don’t understand how neurotypicals can read each other so easily, when faces move so fast and the hints are always so subtle. The solutions me and my parents came up with is that when in public and I have to speak to someone (for example if I’m ordering food at a restaurant) I will try to look at their eyebrows or nose, then at least I’m looking at their face, even if I am just making eye contact with their eyebrows. If I don’t like that strategy, I try to find out what colour their eyes are, although sometimes what can happen is I’ll be so focused on looking at them, that I’ll forget what I’m supposed to say. It becomes natural after a while to just give people’s faces a quick glance when I’m talking. I guess it just comes with practice. It also helps to have a clear idea of what you want to say (in my case what I want to order) and also have a few answers prepared in case they say something else as well. Sometimes, this doesn’t always work, so I’ll occasionally just look to my mum for help. It helps to have someone who, if you get in trouble, they can jump in and save you!

The Anxiety…

See the source image

Where do I begin? Anxiety is a very troublesome emotion, but is one that varies hugely depending on the individual. For me, anxiety is usually a growing sensation of being on edge, but can also be a feeling of detachment, and surrealism, which in turn creates panic.

The latter sensation often occurs when my routine is interrupted. For example, recently my school was closed due to the snow. As much as I was relieved and happy to get a day off and have fun in the snow, for the rest of the day, I felt quite disconnected – like things weren’t real. This wasn’t a pleasant experience, and it also led to a lack of focus on my part, as I felt like I almost couldn’t remember what day it was because nothing was fitting with the routine. The feeling of detachment also made me panic – it reminded me all too much of a similar feeling I get when I’m dreaming a nightmare but I can’t control it.

The former, however – the sensation of being on edge – I most commonly feel when I am surrounded by lots of people. It’s just your classic feeling of nervousness, and any person who is shy or introverted will have likely experienced it. When I get anxious, a lot of the telltale signs appear: walking on tiptoes, looking down, fidgeting and also that subtle stiffness when I move.

In situations like the one directly above, there isn’t always necessarily a solution. I tend to either seek out a distraction (e.g headphones, reading or even chatting with close friends or family if they are present), or to make a game out of it; pretending I’m on a mission to infiltrate a building or street and I have to act natural in order to remain undetected. It’s a little childish, I’ll admit, and I don’t use that strategy often, but thinking of it that way can sometimes help calm me down, because it’s a challenge to solve that I can think about in the same way as a puzzle, rather than dwelling on how many people there are and panicking about what to do if they approach me.

Anxiety, as I have mentioned before, is yellow in my eyes, and when I experience it, I often find it causes my mind to race, and the music track going round in my head almost always speeds up. In previous posts, I said it felt like the floor had dropped out from beneath me. That is partly true, but that is more when I am worried I have done something wrong, rather than just being nervous. So in a way, to me, anxiety has three meanings.

The Guilt Complex

Guilt-Cake-is-yummy

As an aspie, I have a really strong sense about right and wrong, which is sort of strange considering that I know that good and bad are relative terms created by humans to label themselves and encourage behaviour that is beneficial to an individual or society, and discourage that which isn’t. Sorry, I’m rambling. But the thing is, with my good conscience, also comes a ton of guilt if I ever do anything ‘bad’. If I ever do anything wrong, I will obsess about it for weeks, even months and if it’s particularly bad, I will still wince over it years later. The following days after an incident where I get in trouble, it feels like my stomach has been cut out, and there’s just a hole left. A hole that is continually growing and threatening to consume me. I know that may sound dramatic, but that is honestly how it feels. After a while it deadens, until the only time it really hurts is when I remember and get dragged into that depressing memory. I’ll end up thinking about it, usually late at night when I can’t sleep, and the hole through my stomach will start growing again, but then I can’t stop thinking about it. I recall a long time ago, where I listened to a parody version of a song that was often on the radio. However, the parody that I listened to contained swearing – nothing terrible, but still – but my younger self didn’t recognise it as such. Oblivious to the obscene profanity, I quoted the song lyrics to my mum – with my grandparents present as well. My mum, ever the kind one, quietly took me aside and informed me that the words I was singing weren’t allowed. Even though I hadn’t been aware of what I was doing, I still felt tremendously guilty, and this did result in tears. The worst part was, the song that I had listened to the parody of was very popular, and so was played on the radio frequently. Every time the song came on, I would be reminded of my accidental swearing, and that guilty feeling would open up. It still makes me cringe a little when I hear it now, although I do agree it is a good song.

Guilt is probably the worst emotion for me. It’s the one that hurts the most. If I had to associate the emotion with a colour, I would say I’ve always thought of guilt as a green, sometimes brownish yellow colour. I can offer no explanation as to why; that’s just how I think. And to reiterate myself, the emotion just feels like a hole in my stomach, although it often is accompanied by anxiety. Anxiety is a somewhat similar sensation, a gaping, pulling feeling as if something is missing; it feels like the floor has dropped out from under me, and I’m just falling. Anxiety is definitely an electric yellow, and that’s why I often associate guilt as such, because the two are paired.

As far as I am aware, there is no alleviation for guilt other than time or reassurance. If you have any coping , I’d welcome some comments!

The transition from Primary School to Secondary School – it’s not all that bad!

I had been at my Primary School for 7 years and was accustomed to the buildings, staff and everyone around me. I‘d had the same teacher for 4 years and had all the support I needed. But when the time came to decide on a Secondary school, things were actually ok. I was taken to have a look at the 2 secondary schools in my area whilst I was in Year5 and then again in Year6 so it wasn’t all too much to take in and I was quite relaxed. Although I like doing things in a traditional way and in a routine, I also like new, fresh starts and a chance to make myself better, so the thought of what a new school could offer me made me feel positive.

We went to the Open Evenings which were really busy and although I was excited and fascinated it was difficult to relax. I spent a lot of time smiling, but still avoiding looking at anyone. Then we went for a private tour which was better and then we met with the head of SENCO at one of the schools. I was included in all of the meetings and although I felt a bit awkward I could tell that the teacher we met knew so much about Aspergers that I felt like I trusted her right away.

Making the decision between the 2 schools was difficult so we sat down as a family and the tactic I used was to list all the pros and cons of each school. Once the decision was made, my primary school and my parents made appointments for me to visit the school – just for half hour at a time. I sat and ate lunch with a teacher so I could see the dining room at its full capacity. I visited and watched the classroom change-overs so I could hear the bell ringing. I saw a break time and got the chance to walk round the school when it was quiet. After every visit I wrote down any questions or requests I had that I hadn’t been brave enough to ask in person.  My mum could email the SENCO and find the answer, or we would arrange another visit. I was given a map and shown the contact book that we would be using. I liked this because I was able to analyse my surroundings, and when given an opportunity to find where I was I was thrilled because using what I’d learnt made me feel confident, even if I was in a new place.

My primary school was especially helpful: towards the end of the year I became part of a small group and we would talk about our worries and feelings with a teaching assistant. She gave us a little book which contained advice and tips on what to expect and importantly, how to respond! My best friend was also going to the same school and our parents both asked if we could be kept together in our Tutor Group. I think that thanks to both schools working together, this was made possible.

Over the summer holiday my new school emailed me my timetable. This was great because I was able to colour code it and put copies on my wall. I was also sent my profile. This is a piece of paper that all my teachers would have before I got there which explained my likes and dislikes. This was brilliant because I knew then that I would not be put in any awful situations – like the teachers telling me to “look at me when I’m speaking to you”. Something which I am just unable to do.

On my first day we had arranged that I would go in with my friend from her house so we didn’t have to worry about meeting somewhere and we could go in together. I was given a timetable and map along with everyone else but I felt confident because I had already seen these before.

I was given a locker and lots of books but it was all very exciting.

So far everything is going really well. There are of course some issues, mainly with not knowing how to respond to other children, there are so many personalities and it can get very busy. What helps me is talking it over with my family as soon as I get out of school and being given a resolution – so for example, the lunch time queue for food can be very busy and jostling so my mum suggested asking the school to put my plate to one side for me to collect. Once I knew I had this option I was able to deal with the queues, knowing that I had a way out but so far I have not needed it.

The SENCO are also very pro active in my school. I find it almost impossible to ask for help, especially when I am upset but the school has teachers specifically to look out for us and one of those teachers was coming to find me every week to make sure I was ok. Now I go to see her every other week. I keep a list in my head of anything that is bothering me and she will go through the types of things I can say to people to help me resolve things.

Everything is really positive. The only negative thing that I can really think of at the moment is that sometimes when someone knows you have Aspergers and they have read about what Aspergers is, they think a “one size fits all”, when it doesn’t. I don’t mind too much because it is really good that they have tried to understand it but sometimes I feel a bit awkward when they are trying to help me but it’s really over the top. It just shows that as Aspie Kids, we are all different and until you get to know us as individuals you won’t know how our needs differ. Because of my communication problems I can’t tell you if you are off track but it’s nice that you’ve tried!

Actually my communication has improved massively since starting secondary school. I know that I only have to be with a teacher for a single lesson, so they are only looking at me for an hour – not like in primary school when it was 6 hours! So I feel like I have a break in the intensity, even if I will be seeing them the next day.

Having Aspergers matters to me but it doesn’t bother me, if that makes sense? I don’t feel I need to tell people if I don’t want to because I think people judge me for me, not because I have Aspergers. My Aspergers is just who I am, it’s not a separate thing. People can’t like me but not like my Aspergers, because it’s the whole of me. If you like me, you like that I’m an Aspiekid, and so far that’s working just fine!

The (very) early years of having an Aspie-Kid

Our gorgeous daughter was born in 2005. You may not know Erin but she is beautiful, kind, intelligent, has amazing creativity and to us, is perfect in every way (takes after me I think!). She was our first child and my husband and I were the ultimate proud parents – although we really had no clue and I thought I deserved a medal for just getting out of the house before 3pm!

We realised Erin was not happy with other children pretty much as soon as she was old enough to know they were there. She didn’t really crawl and when other babies would crawl over to her she would start to scream and cry – a real “end of the world” type cry. As time went on and we graduated to soft play centres, Erin would be the one sat on my feet, wanting to investigate the toys but from the choice of staying attached to me or playing, she would choose the former. She didn’t need me to acknowledge her there, on my feet, but she would not let herself go unless I went with her. It’s worth saying we weren’t with strangers, I had the most amazing post natal group of friends who became my life line of support and who we met with once or twice a week every week for 5 whole years! One even became Erin’s Godmother! Erin knew these children and their parents but it made no difference.

When Erin was up and walking we would go to the park. On one occasion Erin was sat in a timber car up a ramp. It had a side window, a tiny gap that was about 5 foot off the ground. Another child slid onto the seat beside her and Erin shot out of this tiny gap to get away – luckily I caught her! Our friends just accepted she wasn’t good with other children. Nursery was a nightmare. She went for one day a week so I could work. I lost count of the number of calls I had to go and collect her because she had been crying so much she had made herself sick!

Erin liked everything just so. But that’s not unusual, many children like things in a routine. Their drinks out of a certain cup etc. I can remember one day I was carrying Erin upstairs for her nap and I had been dusting and had not put an ornament back onto the window sill. Erin screamed and cried and was burying her head in me saying “put it back, put it back”. I think it was this final reaction that made me realise that something was going on.

Erin’s dad and I did some research and we realised Aspergers seemed to fit the bill. Erin was clearly very bright. We still had very little understanding though and kind of muddled through. Erin was so well behaved but just got sad. It wasn’t until Erin was in about Y3 at Primary School. It was Christmas time and she was standing underneath a gazebo at school and I could see her face twitching. By the time we got home the twitch was worse. Having no idea I said “what on earth are you doing with your face??” Now knowing that that was probably the worst thing to say! The twitch got worse over the next few days so much so that in one period of 90 seconds she twitched over 60 times. I made an appointment with our GP who immediately referred us to a neurologist. Terrified does not come close to how we were feeling as parents. But it was Christmas so we had put up all the decorations, cards were hanging from every wall space and we tried to cheer everyone up by constantly talking about Santa.

We saw the neurologist within a matter of days. He examined Erin and told us it was stress. Stress! What on earth did my 7 year old have to be stressed about? My God, were we really such awful parents? He was great and explained that a child’s stress is completely different to an adult’s stress. Even exciting, positive stimuli could cause stress to a child on the spectrum. Erin’s stress levels were so high they had manifested themselves into a physical release.

We were referred to CAMHS. Initially I refused to accept the referral. I was mortified that my child was stressed and felt that CAMHS dealt with really ill, depressed children and that was not my daughter. My GP spoke to me and reassured me that they would be able to help. I am so glad we went. The wonderful Dr we saw chatted to both me and Erin and felt that Erin did have Aspergers. She explained the importance of keeping stimuli to a minimum and taught us both about the spectrum.

I cringed at how we had done just the opposite of that over Christmas. The guilt you feel as parents is indescribable. I grew her in my tummy so ultimately I felt the blame rested with me. How could my daughter who is so loved, feel so sad? We analysed over and over again everything we had done “wrong”. Then the fears for her future enveloped us, would she be happy? How could we make her happy? How could we protect her from this huge scary world? Well, with lots of research (and I mean loads) and lots of support from some fantastic friends, family and school, we put in place some great strategies for keeping routines and helping Erin know exactly what was coming next and importantly what was expected of her. Erin simply transformed.

Erin, at times, had a kind of sadness about her. People have said to me since, “oh she was such a miserable baby” (yeah thanks, that’s really great!) but now we understand why. Now that we understand so much more about what works for Erin she has absolutely blossomed.

I could write forever about our experiences, this all just seems so brief, but I think knowledge is truly key and Erin is the one who gives us, as her family, so much knowledge about where she is coming from, it makes it a privilege to be able to help her overcome the massive challenges that she faces in a simple day. We couldn’t be more proud of our Aspie-Kid and we love her to bits!

Day at school as an Aspie kid

As an aspie kid, even regular activities such as being at school can be incredibly stressful.

As I enter the school gates, I can sometimes feel anxious simply because I am unsure, even after 7 years at the school.  Am I late? Early? I will glance in the window and discover if any classmates have arrived already. This helps to give reassurance that I am doing the right thing,

After hanging up my bags, and having a momentary conversation with a few classmates in the cloakroom,  I am often reluctant to enter the classroom first. I feel this is a result of previous entries when my teacher has greeted me in the morning.  I dislike it when this happens because I am never certain how to respond. Usually I will mumble a response and attempt to smile away any uncertainty, but it is important to know that I don’t mean any offence by not looking in your direction and not responding confidently.  It is normal for me to avoid eye contact and looking at other people’s faces.  It is important that my inability to obey the phrase ‘look at me when I’m talking to you’ is understood.

During lessons, I become most confident being left to focus on my work. Maths is by far my favourite subject, mainly because I feel I excel at it.  Knowing that I’m doing the right thing is very reassuring for me. However, sometimes direct instructions and questions that are aimed specifically towards me can be a problem .When teachers ask me questions it is far better saying ‘Erin, can you pass me that book?’ rather than ‘Pass me that book please Erin.’ This is because I can become over absorbed in an activity, (especially when reading) resulting in me blocking out any other sounds, until I hear my name. If the question precedes my name, I don’t hear the question I only hear my name. Then I worry because I know I have missed something!

Lunch time can demonstrate a large issue for me; as an aspie kid, I have an enormous sense of right and wrong, therefore, if someone else is misbehaving or just pushing in the queue I can become tense. At times I can actually feel scared. I can’t anticipate when that behaviour will reach its limit. However I will rarely inform anyone else about this during the school day. When I become tense or stressed, I struggle to release my negative emotions which results in me becoming irritable and preferring not to speak. I find that all these emotions just hover in my stomach which leads me to occasional tears and a complete breakdown.

I have a canopy in my class room that I can retreat into but still feel part of the class and importantly, still hear the lesson the teacher is giving. I prefer it this way rather than having to walk out and then worse – back in to the class with everyone looking at me. I need time out to process things – usually after break times because they are so busy.

Home time brings relief to me; if I have been stressed at school I will release all my emotions in the car, explaining it to my mum and calming myself down.

The promise of a new day is a huge consolation; sometimes when something bad happens in the morning and I cry or become deeply annoyed and upset, I just want to start the day again. In my mind I have the concept of every day has to be a good day, and I class days as good, bad, really good, really bad etc. This may seem illogical but I enjoy it. However if a morning has been upsetting, I can become irritable and upset at school for I feel even if I do brilliantly at school today, it can’t be a super good day because I’ve had a bad morning.

I love school. I love learning. It really pleases me when I have done something right. My advice for helping me would be fairly simple: Try and get to know me. Give me praise to boost my confidence – which is low at times. Realise that even though I may be functioning ok, I may actually be in pieces inside. Know that it is impossible for me to keep eye contact with you without it causing me physical discomfort. Try and pick up on my signs that I am uncomfortable –Do I look stiff when I walk? I can’t tell you I am upset about something, but the signs are all there. Teachers will rarely see me upset because I contain it all until I release it at home time. If you notice that I look tense and you understand the reason, the best thing to do is explain things to me gently (if you can, try to make it funny and get me to smile) and reassure me that I’m doing the right thing. This helps me to calm down and become happy again.