Bright Lights!

I’ve talked about sensory problems before, because it’s an extremely important part  of what it means to be autistic. We have to live in a world created by neurotypicals and because we don’t understand it or its rules, if we are to have any hope of functioning in it we have to use up a lot of energy to try and overcome our difficulties. When you throw into the mix the fact that we don’t see lights, hear noises or feel things in the same way most people do, you can begin to understand why meltdowns occur, and why our coping mechanisms can fail.

For the most part I consider myself lucky, compared to a lot of others on the spectrum, because although I do have sensory issues, generally they are nothing like as bad as some people experience. I do not suffer physical pain from sensory overload, as I know some do. However, I recently had an experience that stripped away all of my coping mechanisms, reminded me just how solidly I am on the spectrum and allowed me a better understanding of those who suffer this way on a daily basis. I hope it will let you understand them better too.

My day started normally. I was not overly agitated, it was a usual Monday morning. We had been told that the lights in the office where I work were being changed over the weekend, and although I anticipated that I wouldn’t like it, I hadn’t thought for a moment that it would actually cause me any problems. How wrong I was.

The new lights were bright. No, I mean they were BRIGHT! That’s not just my opinion because I’m hypersensitive, everyone who came into the office was shocked as they walked through the door at how bright they were. The difference between me, and everyone else, is that they proceeded to then get on with their day as normal, while I could not.

I felt as though the light was freezing me, so that I couldn’t move. I did manage to make it to my desk, but moving felt very wrong. I just wanted to stay completely still. I felt so completely frozen by the light, that I couldn’t even think straight, and failed miserably to try and focus on my work. I dreaded my phone ringing, because I knew that if it did I would be no use to my customers at all. I’m usually a complete chatterbox, but that day talking was an effort and I didn’t want to talk at all. Forming complete sentences felt like a struggle. I was focusing all my energy on coping with the light!

What scared me more than anything though was that for an entire working day I completely lost the ability to make eye contact. I don’t like eye contact at the best of times, but I can do it. I regulate it and plan it because it doesn’t come naturally to me, but I do it. Not that day. I was even really trying to make eye contact with people who I consider to be friends, not just colleagues, but I just couldn’t do it. Again, it was as though I was frozen. I was an island, and the only way I could cope was to stay an island, so the thought of looking at someone else and connecting with them absolutely petrified me. I felt more helpless in those moments than I have ever felt in my life.

I have had 34 years to build coping mechanisms, to repress tendencies that aren’t appropriate and to cope with situations or sensations that aren’t comfortable for me. I’ve been doing it for so long, that I’ve stopped noticing how much I am actually regulating my behaviour. The lights in the office completely threw me, because they were so extreme, that they forced me to focus all my energies on dealing with them and all my usual coping mechanisms were abandoned and stripped away. I barely recognised the person that was left. I felt so…..so…..Autistic.

All I really wanted to do (and I very nearly did) was crawl under my desk where it was dark, curl up into a ball, and calm myself. Instead I settled for putting on a pair of very dark men’s sunglasses one of my friends had in his draw. I know I looked ridiculous sat in the office wearing dark sunglasses, because everyone told me so, but it did help and it was the only way I could get any work done.

Thankfully I did get used to the light, and now it’s completely normal to me, but that first day is an experience I will never forget.

My School Years

Suddenly discovering in your thirties that you are in fact on the autistic spectrum is really something to come to terms with, not least because you not only begin to understand yourself for the first time, but you begin to work through a re-writing of you entire history. For me one of the most eye opening moments must have been reading through all my old school reports.

I remember school as a difficult time because I remember feeling different to the other girls throughout my school years. One of my earliest memories involves glancing up at birds in the trees that had caught my attention one afternoon during our lunch break. They fascinated me and I became completely absorbed as I watched them fly through the blue sky and land in the trees. The sound of all the children around me completely fell away and although I was surrounded by children running here and there playing their games, all I knew was the birds and the sky. I was about six years old. When I looked down from the sky to the playground I found it empty and silent. Though it seems as though only a few moments had passed while I had been watching the birds, in fact time enough had passed for the bell to ring, all the children to line up and return to their classes. I was all alone, left, forgotten about. I had to bang on the door for them to let me in, bewildered as I was about what had happened.

As my school years went on I felt no more included than I was in that forgotten playtime. It hurts me now to read the reports that clearly indicate a child that needed help, but was offered none.

‘She is sometimes rather dreamy, but will persevere to finish the task in hand. She is something of a ‘loner’ in the class and seems to prefer playing with the boys or by herself.’ Head teacher, aged 6.

‘Occasionally Sarah seems to go into a world of her own. She is rather disorganised, is constantly losing things and feeling annoyed with everyone and everything around her.’ Class Tutor, aged 10.

‘Sarah’s standard of work varies greatly. It can be of a very high standard but can also be “slapdash” presumably according to her degree of interest. She has settled down considerably this year. There have been very few outbreaks of socially unacceptable behaviour.’ Class Tutor, aged 11

‘Her reading, surprisingly, shows evidence of difficulty when encountering new words. This seems to be more to do with difficulty in decoding rather than lack of vocabulary.’ English Teacher, aged 11

‘Sarah’s contribution in class is variable. Sometimes she seems to go off in a dream and has no idea as to what is going on around her.’ Social Studies, aged 11

‘Sarah’s progress has been slow this half year due to the fact that she is late to most lessons.’ Sports teacher, age 12. This is because I struggled with the simple tasks of undressing and dressing myself due to my lack of perception about how my body relates to its surrounding environment (poor proprioception). This difficulty was never recognised by my teachers. I was simply labelled ‘slow.’

To me these comments scream autism and dyspraxia. The fact that I was a ‘loner,’ I was only good at what interested me, I played with the boys more than the girls, I often became so absorbed in my own world that I became oblivious to what was going on around me, I at times exhibited ‘unacceptable behaviour’ and was unable to break down words to read them if I was not already familiar with them. This is a problem my 7 year old son also has.

I have Aspergers, but Aspergers was not a diagnosis until 1994, when I was already 14 years old. When I was a six year old, 10 years old, 11 years old, struggling to fit in and work my way through mainstream education, autism was defined by a lack of language development and a below average intelligence. Clearly I did not fit this criteria. Yet teachers expressed concern over my behaviour. They knew I was capable of more than I was achieving, but they did not help me, they did not alert my parents, they simply labelled me as slow, lazy and told me I should try harder.

Even though I know that those who taught me could not have known that I was on the autistic spectrum, albeit at the high end, I still can’t help but feel angry and cheated, because the help I needed was simply not there for me.

Today it is my mission to ensure that my son has all the help and opportunities that I can possible give him, and he will grow up knowing that he is not a ‘loner’ with ‘unacceptable behaviour.’ He is a unique individual, with exceptional abilities.

STICK TO THE PLAN!

When dealing with people with Autism it is always advised that visual timetables should be used, and great care taken to prepare the individual for what’s coming next. Autistic people need to know what to expect. We don’t like surprises. I don’t even like my presents to be surprises and am the one in charge of the buying of my own Christmas and birthday presents from the entire family. So yes, planning ahead is extremely important when it comes to dealing with those on the spectrum………but it can also be our undoing.

I plan everything in advance. I make lists, I do research, I allocate time slots and I drive everyone else involved around the bend with it. I’m at my worst when it comes to day trips which we do a lot of in the summer holidays. We like to take the kids to a lot of theme parks and safari’s.  If we’re going to a place we’ve never been before I will spend hours researching it to the extent that by the time we get there I will know my way around. I will have explored every single page of the website several times and I will know exactly what to expect when we get there. I will know where the lockers are, how much they cost and what times various performances of shows are. I enjoy this process of research into a new place so much that I think it’s as fun for me as actually going there is. 

Great! I bet your thinking I sound like a really useful person to have on a trip – but I’m really the last person you want, because the planning doesn’t stop there. I will plan the route we are to take around the park, which rides and attractions we will visit and in which order, where we are going to have lunch and at what time we are going to. This is where I spoil the day for myself, because the greatest problem of planning things when it comes to Autism is that once the plan has been made IT MUST BE STUCK TO EXACTLY.

If anyone suggests doing something that is not included in the plan I will start to panic and it will build until I hit meltdown. In fact throughout the day I will be extremely anxious, focusing more on carrying out the plan so that we can have the ‘perfect day’ than I am on actually enjoying myself. I will hurtle us through the plan because I can’t relax until we have reached the end and I know that we have done everything we are supposed to. Only then can I indulge in the spontaneous. Before this happens there is always the threat that we won’t get everything done, and that the day will be ruined. I stress myself and my family out so much with these plans that I can spoil everyone’s fun.

So far this year we have been on five days out. We have done Legoland, Wookey Hole, Chessington World of Adventures, Folly Farm and Longleat and this year I have made a conscious effort to limit the planning. I’ve still done the research, but I’ve tried to let my family lead the way around the attractions, and I think I’ve had more fun this year than I ever have before. I won’t lie, there has still been a certain amount of anxiety. I couldn’t really relax at Chessington until we had done Sea Life and Zufari, and I couldn’t relax at Folly Farm until we had seen the animals and the penguins, because my aunt had expressed a specific desire to see them, but I have made huge progress.

So, planning for people with Autism is a catch 22 situation. We can’t live without plans, they are our safety net and our road map, but we are also bound by them, restricted by them and ultimately controlled by them. If there is a plan in place, there is something that can be broken, and when the plan breaks…..so do we.

Socialising

I have been putting off writing this post because I have so much to say that I can't think where to start, so I think the best thing is to just dive in and get writing.

Throughout my life I have always had this unshakable feeling that I was different to everyone else. I have spent years watching other people interact with each other, form friendships, form romantic relationships, and it's always felt as though they were all in on some valuable secret that I didn't know about.

When I was in school I was the child who spent a lot of time standing at the edge of the playground locked in my own little fantasy world playing by myself. It wasn't that the other children didn't like me, it was just that I didn't know how to react to them. I did have friends, but I found it difficult to really connect to other girls, as I have never had any interest in anything girly. Even today other women often seem like alien creatures to me because I just don't care about hair, or makeup, or clothes. I always felt much more comfortable with the boys as they were much less complicated and easier for me to understand than girls. Unfortunately I spent several years in an all girls school, and there is no doubt that this was the low point of my school days. It was at this time that I developed OCD and became a virtual nervous wreck.

By the time I reached my teenage years I'd had a little more practise learning how to talk to people from observing them for so many years, but I still had a lot to learn. I still didn't understand the concept of social chit chat. I just couldn't do it. I thought it was pointless to say something if its not important and interesting. Of course social chit chat is vital when meeting new people, (I know this now) and I remember being told on several occasions when I started going out drinking 'Why don't you talk, you're boring!' because if I didn't have something worth while to say I would just sit in silence. Even my husband is guilty of having said this to me years later when we first met - and he's never living it down! Talk about touching a nerve.

My late teenage years were a nightmare for me. All my girlfriends were going from one boyfriend to another and I couldn't find a single one...and it wasn't for lack of trying either. I was completely clueless when it came to flirting, but I would obsess about guys I was interested in so that they were all I could think about. No doubt I probably seemed like I was stalking them from time to time. It's probably no wonder they weren't interested, but it still broke my heart. I thought I must be some kind of freak, because I was the only one I knew who just couldn't get a boyfriend.

Things didn't improve too much in university. I was the only one in a flat of 12 people in the halls of residence who ended the first year without having anyone to move in with in second year. I ended up having to move in with complete strangers. It was not the uni experience I had been expecting. People told me they couldn't click with me because I was older than them, but I was only one year older than most of them and the same age as one of them. I think I was probably just too serious for them.

I am 32 years old now and not that confused teenager anymore. I have become very good at looking like I fit in socially, but believe me when I tell you that it does not come naturally to me at all. I have merely become very good a mimicking. When I meet new people I have a catalogue of questions that I know I can ask that are socially acceptable, and that will make it appear that I have an appropriate amount of interest in the other person. When I talk to people I am constantly monitoring eye contact, and making sure that I am doing it enough (but not too much) as this also does not come naturally to me. Throughout conversations I am constantly monitoring what I am saying, and what the other person is saying and working hard to try and seem like everyone else so that I can fit in.....and it's exhausting! After social situations I usually find that I am completely drained.

This would all be fine, if it wasn't for the fact that I still have a lot to learn. I still don't get jokes. Not ones with a punch line anyway. Please don't tell them to me, I won't find them funny and then I'll feel like and idiot. I also don't get hints. Don't try and be subtle with me I won't understand, and if you say one thing, but you mean another, the chances are I'm just going to take what you're actually saying literally and not read anything into it. In the same way, unless it's really obvious, I often miss sarcasm. I just can't hear that tone that tells me the person isn't serious. This has made me look like a complete idiot and given people a great laugh at my expense over the years. Sometimes I become so engrossed in talking about a topic that interests me that I become completely oblivious to the fact that the other person has no interest in what I am saying. I can also seem very abrupt at times and have often managed to really annoy people without understanding why what I've said would annoy them. It becomes extremely frustrating when you have good intentions in your head and your words only result in people shouting at you. I also find this quite confusing when it happens.

New social situations that I've never been in before, and therefore don't have an understanding of how to behave in, terrify me. I try to mix with people and do what my friends are doing, but sometimes it's really hard. Whenever I'm coming up to a new social event it keeps me up with panic attacks for nights leading up to it. I panic that I won't know what to say, or do, that I will shut down and not say anything at all, that I will say the wrong thing etc... I do not go out to socialise very often. It usually seems like a good idea initially, but the reality scares me and I often end up backing out.

Unfortunately this doesn't make me a very fun people for most people to hang out with and over the years I have become very aware that whenever I have a group of friends, it always goes well in the beginning, and then bit by bit they'll stop inviting me to things. Other people in the group remain in touch with each other, but I always end up feeling like I've been pushed out. I never see it coming, and it always hurts. I have had friendships that I didn't realise had fallen apart until I wasn't invited to a major life event. I'm completely clueless, but every time it happens it breaks my heart.

Guide to me - I don't want to be a social outcast; I want to maintain my friendships; I do care but I'm not always good a showing it; don't assume that I have understood you meaning or intention; please be patient with me as I'm not comfortable in all the social situations most people are and I can't help that; if I seem rude or abrupt I don't mean to be so please don't be offended; when I get left out of things it REALLY hurts because it is the story of my life and there's only so much rejection a person can take, please remember this.

My Early Years

It's safe to say I wasn't the easiest child to raise. Although for the first couple of years of my life I lulled my parents into a false sense of security, from around the age of two that soon came to an end. The well behaved calm child my mother had thought she had, began to have meltdowns that she found it difficult to bring me out of. I was her first child and at the time she attributed my meltdowns to the terrible 2s and hoped that I would grow out of them. I can tell you now at aged 32 that I never have!

Taking me out and about began to be troublesome. My mother would cringe as I would roll around on the floor of the doctors waiting room while all the other children sat on the seats waiting patiently. At the first meeting with my new headmistress when I was old enough to start school the woman looked at me rolling around on the floor while she talked to my parents and said "she's going to be a handful"

I also showed other early signs of being on the spectrum. I would walk on my toes more than most children. My mother thought it was cute at the time, but when I was 16 the doctors informed me that walking on my toes as a child was the likely cause of the weakness and hyper-flexibility that I was experiencing in my ankle joints. It is also another sign of being on the autistic spectrum.

When I was nearly 4 my mother became concerned that I often wasn't responding when she was talking to me. She began to be concerned that I might have hearing problems and so she took me to the doctor. After running some initial tests they informed her that I was in fact deaf, and that the only reason I was speaking as well as I was is that I was lip reading. I can remember taking these tests and I remember hearing beeps in my ears, but I have no memory of how I responded to them. After running some more tests they determined finally that I was not deaf, merely choosing not to respond. I think that today this would lead to an investigation into why I was choosing not to respond, but back in the early 80s there was very little awareness about the autistic spectrum, and no further investigations were carried out.

Although I was not behind in my speech and sat up, crawled and walked on time, I was 4 years old before I started making an attempt to dress myself. My own daughter was only 2 when she started insisting on trying to dress herself, and since this places me more in line with my son who is 5 and has only just started to occasionally try to dress himself, I wonder if my delays in this area point to me having had similar problems to him at this age.

It is hard to look back over 3 decades and assess what signs of Aspergers I exhibited as a small child, but some of these anecdotes I grew up with and it is only now that I realise they slot into the Aspergers puzzle. The more both myself and my parents think about it the more we understand my behaviour back then...and that was just the beginning!