The Comfort of the Known

Last week was half term, and we barely made it through with my son. In fact it was worse than the summer holidays, and the reason for this is likely to be that he is newly settled in a new school. He loves his new school and he has even told me he has a girlfriend now, so I guess it's not surprising that having found a new comfort zone, the half term holidays really threw him.

This has got me thinking recently about how I deal with similar situations. Obviously as a full time working adult I don't have set holidays that are out of my control. The holidays I do book are very much in my control. However, sick days are very much out of my control...and are honestly extremely difficult for me to cope with.

The way I feel about sick leave is probably a very good example of why autistic people fear any kind of change in routine. When I have to call the office and tell them I am not coming in because I am sick I feel as though by being removed from my normal route, it will no longer be there for me when I return. It is as though I am risking the loss of my place in the world I have built for myself.
It feels as though I am out of place. As though the world is continuing on and I have been excluded from it. A sense of panic sets in and I feel that if I don't return to my normal world, then when I try to return to it, it will be too late and I will no longer be welcome.

Well-meaning friends and relatives tell me to take an extra day off, to make sure I am better before I return, but I can't do it. I MUST return to work as quickly as possible to reclaim my place in my world. To reassure myself that even though I have been sick, the world will continue on as it did before, and with me in it.

This must be what it feels like for Autistic children on their school holidays, as the holidays are completely out of their control. Will the school still be there when they return? Will their teachers and their friends still be there? Will they still love them? Will things look, smell, sound different? The world is one big unknown quantity, and we are all terrified that just when we've figured out a wonderful little place in it....it will all just disappear...

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.