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.