A hidden Disability...

I have Autism – hopefully that’s pretty obvious from the title of this blog. But actually that isn’t particularly helpful to a lot of people who may not understand what Autism is. A lot of people either think people who are Autistic are either really smart or intellectually impaired. Autism goes much deeper than intelligence, it affects everything from emotional processing, stimulus processing, social imagination and communication, and it even affects physical health.

Each single person with Autism is a single person with Autism. The condition is a spectrum condition, meaning each person will present with various intensities of the symptoms. The variation makes it difficult for me to speak about what other people’s experiences are of the condition, because I am different to everyone else on the spectrum.

I want people to understand how Autism affects me on a day to day basis. I have developed very efficient coping strategies and mechanisms to negotiate socialising. A lot of the time the outside world is unaware of the difficulties I face because they are hidden, and a lot of people assume that I am okay because they can’t see some of the disabling aspects of Autism. So, here’s a list of some of my Autism-y behaviours, symptoms, mannerisms in everyday life;

1. I spend 90% of my time completely confused and frustrated, this world obviously is full of human beings, and I find human beings confusing which in turn frustrates me. I have good strategies to cope with socialising and a good understanding of communication, but it doesn't come naturally to me. Socialising is more like a maths lesson to me compared to just an automatic function for most other people.

2. I cannot remember people's faces or names very well. I think this is an autism thing, it causes me trouble when I meet people at meetings and conferences for example and I have to pretend I remember them to avoid offending them. It’s not that I don’t try or that I don’t respect people, but my brain just does not retain that kind of information. Strings of numbers or digits, like car number plates for example, and I can remember for years.

3. My imagination is great, but sometimes I find it difficult to remember if I did something in reality or if I just imagined that I did it. Which can cause trouble when trying to keep track of what I have done and what I need to do. I can genuinely become lost in my thoughts and imagination, I can sometimes spend hours sitting doing nothing but thinking.

4. I repeat myself a lot, not quite sure why I do that, I just do. I also repeat things people have just said to me, back to them. I also sometimes need people to repeat things over and over to me before I can understand them.

5. I find it difficult to focus on voices, my brain seems to prioritise other noises and stimuli above human voices. It means I have trouble focussing on what people are talking about, instead I think about observations I am making of the person and my surroundings. Then I have to pretend that I was listening, and try and reply with something that is relevant to what they were saying.

6. I can't deal with stress very well, because when I get stressed everything else becomes heightened and my brain can't cope with so much information.

7. I watch the same things over and over again on telly, which isn't really a problem for me, but apparently it's annoying for other people. I like driving the same roads over and over, even if it’s not the easiest way to get to my destination. I like to eat the same types of food over and over again as well. I enjoy repetition because its predictable and so I don’t get stressed or worried.

8. It really frustrates me when I have to make a decision, sometimes even simple decisions like what to eat for lunch can annoy me. I'm not sure why decisions upset me, I just get confused and my brain gets all messy.

9. I can be slower to understand or work out things compared to most people, that's just how my brain is. It's harder for me to ignore the background noise. People sometimes think that because I'm slower to respond or it takes me longer to complete tasks that I'm not very intelligent, which annoys me because I am intelligent, and my academic ability is something I pride myself on.

10. It's really annoys me when someone messes up my system, and I can get a bit snappy.

11. I am incredibly gullible, so if people are being sarcastic then I believe what they are saying and don't realise it's not necessarily true. Sometimes I don't understand jokes because I am a bit too literal.

12. I struggle with uncertainty, whether it's details about a journey I am taking or whether it's life plans and events. I like to know what's happening down to the fine details. That way I don't get too stressed out and confused.

13. I hate eye contact, it is very uncomfortable for me. When I make eye contact all I see is eyeballs, lots of people say they can see more than that when they make eye contact, I don't understand that. I force myself to make eye contact because I know that non autistic people think I'm not listening if I don't make eye contact.

14. I am introverted, I naturally just like being by myself. I enjoy my own company, and I find socialising and spending time with most other people hard work and exhausting. I can seem quite anti-social, but in fact I'm just selectively social. To be honest, if I'm out at social events the likelihood is that I would rather be at home alone with my pets, not because I don't like or respect the people I'm with, it’s just I can’t relax around most other people.

15. I hate speaking on the phone. I have trouble following conversations, so I have developed an understanding of body language which helps me follow conversation a bit better. But on the phone I can’t see the person who's speaking so I can’t follow the conversation very well, I don't know when it’s my turn to talk, I can’t tell when someone asked a question or just says a statement. It takes me a while to process and figure out what the other person said, and people talk really quickly on the phone, so I get really muddle up.

16. I end up locking myself in public toilets quite a lot, being autistic means that my brain doesn't filter information very well, so I'm hyper sensitive stimuli, especially light and sound, so sometimes I can become over stimulated which is when I am at risk of going into meltdown - a state which I don't want anyone to see me in, I have no control, and act on any urge. So, if I'm out and about and away from the house if I feel myself become overstimulated or panicky I usually have to find a public bathroom and lock myself in a cubicle, firstly because I feel better if I'm in a small enclosed space and if I do go over the edge then no one can see me crying and panicking.

17. I also quite like sitting in the dark, my brain calms down a bit, and I can think properly.

18. I think I'm more susceptible to trauma, for example even when small things happen which scare me or upset me, it hits me much harder, I get angrier or more upset compared to others. Every time something negative happens it affects me more than it should, I keep feeling like I'm in the situation again, and the feelings I had in the negative experience keep coming back. It keeps me up at night, and all of the situations which caused me to feel lots of negative emotions replay over and over in my head, and each time I feel like I'm back in that situation.

19. I have a lot of GI problems, which is common for people with Autism. I am lactose intolerant, and I think I'm sensitive to gluten as well, I get a lot of stomach aches and nausea.

There is so much more to me than my Autism, however Autism is and always will be a big part of my life. It affects most things that I do, it affects how I feel emotions, it affects my physical health, it affects how I see people and the world around me, and it affects my relationships with people. I, personally, call it a disability sometimes because it does have negative impacts on my how I live my life and cope with the world around me. However, being autistic gives me abilities as well; I am able to hyper-focus on specific topics of interest, I can see patterns, I am honest and feel a deep need for justice, I have a strong connection with animals, and many other abilities. These abilities outweigh the disabilities.

I don't fit into a stereotype because I am unique, just as everyone else on the spectrum, we aren't just factory made robots. We have things to offer, and interesting things to say. I also have those annoying personality traits just like everyone else has. Don't dismiss me because I'm different or because I have a disability, I can and will prove that those things don't slow me down, in fact I can be better because of them.

If you want to know a bit more about Autism, take a look at the National Autistic Society website, here’s the link;

http://www.autism.org.uk/about.aspx