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.

Don't take my Autism away from me.

For the most part telling people I have Aspergers has been a really positive experience. My friends have accepted this and understood it and they GET me now much better than they did before. I can be myself, and mostly it’s all good. However,  I’m also raising an autistic son, and I basically live in the world of special needs and of course this means that I’m exposing myself to a whole world of different opinions, and some of them offend me.

The bottom line is that I’m on that magical thing we call the Autistic Spectrum. I always have been and I always will be. What’s more, so is my father, who I love very much, and so is my son, who is one of my two favourite people in the whole wide world. When I think hard about who I am, what I want in life, what it means to be me, and what it is I like most about myself, I can’t separate any of it from my Autism ‘symptoms.’ I am who I am because I am on the spectrum

So when I hear people talk about curing Autism, or talking about it as though it is a separate entity from those who ‘have’ it, I can’t help but find it offensive.  If a person hates Autism…does that me they hate me? I wouldn’t be who I am without it. And neither would my son….or my father. And some of the things I love most about all three of us, are traits we have because we’re autistic.

As a child I had an Autistic father who scared me with his meltdowns and always told me the harsh truth because he doesn’t believe in anything  else. I seriously struggled through the process of growing up because I always felt different and didn’t understand why I wasn’t fitting in. As a parent I am often frustrated and defeated as I try to negotiate the minefields of raising an Autistic child of my own.  I fully understand the issues and the difficulties of Autism. But would I change a thing about the three of us? Not a chance. Because then we wouldn’t be us. I have an intelligent supportive father and an extremely loving son with an amazing sense of humour. For myself, although I drive people around me nuts and often feel lost an out of control, I wouldn’t trade my veracious appetite for knowledge and studying for anything.

I wish people would stop viewing autism as something that should…or even could!....be taken away from an individual. It’s not a problem, it’s not an illness, it’s just a different way of being that is not compatible with mainstream culture. I do not want a cure, I do not want a solution, all I want is acceptance and understanding. For those that offer me that I have an enormous amount of gratitude. For those that think that Autism is something to be fought, or cured, please think about what you’re saying around those for whom it is simply a way of being.

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.

To Me Autism Is...

Today is Autism Awareness day and April is Autism Awareness month. Everyone who is autistic is different and views the world in a different way, so in light of this, and to spread the awareness, this blog post is all about what autism means to me and the world that I live in. 

To me Autism is…

…feeling like a stranger in a foreign country where everyone is speaking a different language to me.

…being irritated by so many little noises all around.

…having an incredible ability to focus on studies that expand my mind and can open new doors.

…becoming so absorbed in things that I’m interested in that the smallest distraction can make me want to explode like a volcano.

…talking incessantly about the same things all the time.

…needing to plan every activity to the smallest detail and then follow the plan EXACTLY!

…losing friend after friend because I don’t know how to hold on to them.

…bluffing my way through conversation because I don’t always understand what people are saying.

…not understanding jokes

…feeling left out

...feeling left out

…feeling left out

…being extremely organised

…valuing friendships and appreciating the smallest kindness or feeling of inclusion because it’s so much harder for me to earn it.

…suffering from anxiety without even knowing why

…achieving the award of Young Animal Welfare Person of the Year 1991 at age 11 due to the focus I placed on running my own animal charity from the age of 9.

…finding it extremely difficult to shut my brain down to sleep, because it’s so busy.

…being bad at eye contact when I’m feeling uncomfortable

…being over the moon with the self-checkouts we now have in the supermarkets because I don’t have to talk to anyone when I do my shopping anymore

…having no sense of how my body relates to the world around me and constantly bumping into things, and dropping things, and nocking things, and falling over!

…having a strange accent that is mostly influenced by the TV I watch and which often causes people to think I am foreign.

…living in the fantasy worlds I find through the TV and in books, because they are more real to me than the real world. I would honestly live in them if I could and resent anything that takes me away from them.

…finding doing normal everyday things like housework, washing clothes, getting up and going to work, doing my work, and so on all a REAL effort, because I’m literally having to pull myself out of my head and remind myself about what actually needs to be done. I could live in my head for hours and hours, without actually doing anything, and be perfectly happy. I find the world extremely irritating, because it doesn’t let me do this.

…losing control over the smallest things because the pressure has built and built and built until it can’t be contained anymore and watching from inside in horror at my behaviour and wondering why no one understands me.

…being able to understand my son and the way his brain works – this is the greatest gift of all.

Would I ever change the fact that I’m autistic? NO! I wouldn’t be me if I wasn’t autistic and I believe I get more out of life because of the focus I have on the subjects that I’m interested in. I am also blessed to be surrounded by a lot of people who support me, love me with my quirks, and make this life one well worth living.

The Difficulty of 'Hello'

It has been a while since my last blog, but here I am back with more to say about the confusing place that is my brain. I’ve talked about issues with socialising before, but I’m aware that there is one crucial part to socialising that I didn’t touch on before – the initial greeting. Through an awful lot of observation and practise, I have by now managed to master the art of small talk, I can participate in conversations with people quite well providing I’m interested in the subject and I’ve learnt to pepper my talk with thoughtful questions about the other person, but one thing that still fills me with dread, and which I don’t think I will ever feel comfortable with, is perhaps the most simplest interaction of all – saying hello!

The main occasion that this simple interaction fills me with dread, is when I am simply walking past someone, such as a stranger on the street, or a colleague in the office. As we approach each other I feel awkward and panicky as I desperately try to decide how I’m going to handle the situation. What I want to do is keep my head down, completely avoid eye contact and fail to acknowledge their presence, staying nice and safe in the comfort zone that is my own head. However, I know enough to know that doing so would appear rude. So a million things run through my mind: shall I make eye contact? shall I say hello, or just smile? do they expect me do anything, or can I get away with pretending I haven’t seen them at all? Usually I panic through these thoughts until the last possible moment, and then force myself to make eye contact and either smile or say hello – and I hate having to do this. If possible I will whip my phone out and pretend I’m doing something on it to avoid the awkward dance that I don’t really know the steps to, or I’ll even take a longer route somewhere to avoid people.

The same can be said for the coffee place in work. It’s the same meaningless niceties of greeting and negotiating space with other people that makes me extremely uncomfortable. I will sit at my desk for an hour or more wanting a drink, but having to wait until the coffee area is clear of people so that I don’t have to worry about what kind of greetings they might expect of me. I’m always mortified if I head there when it’s empty and someone else gets there before me.

I also struggle with saying hello when I initiate a conversation with someone else. There have been times when I’ve gone to talk to people and launched straight into the subject I want to discuss only to be quickly interrupted with a sarcastic ‘Hello Sarah!’ at which point I realise I’ve failed to follow the expected rules of conversation. Sometimes the act of saying hello just seems pointless to me when there are other more important things to get to. 

It’s hard to explain why this is so difficult to me, but I think it’s because it’s such a small subtle interaction that I just don’t understand how to do it, or if I’m doing it right, it’s causing me so much energy in the thought processes going into it, that it makes me feel extremely uncomfortable and awkward. It’s also true that the fleeting eye contact required is no small part of why it makes me feel uncomfortable. I put a lot of thought into regulating eye contact as it is, but the small amount required when greeting someone in passing means that it’s very difficult for me to gauge the appropriate amount to be made.

My son seems to have similar issues, and I’m currently trying to get him to say hello and goodbye to people, which he usually does without making any eye contact. I confess I sometimes use him as a way to deflect the responsibility of saying it myself. If I look like I’m focussing on getting him to say hello and goodbye I am looking at him, not the other person, which is more comfortable for me, and I don’t have to say anything to them. The truth is I could quite happily dispense with saying hello to people as the practise often makes me feel so uncomfortable that I can’t see myself ever feeling at ease with it.