Roz’s second post for TOTM!
I was diagnosed with Autism Spectrum Disorder two years ago, so by all rights I should be able to explain it easily and talk about how it affects me, not the case apparently. On probably about my 8th attempt at this post and I’ve cracked out the wine, it has to be done.
“If you’ve met one person with Autism, you’ve met one person with Autism”
This slightly stupid sounding quote rings so true; people with Autism are just like people without autism; intensely varied individuals. Autism being a spectrum condition means even the definition of Autism varies from person to person. I have seen this first hand having friends and family who also have Autism. This post will mostly cover my own personal experiences with Autism.
“Mild autism doesn’t mean I experience my autism mildly. Mild autism means that you experience my autism mildly.”
I have had good friends initially skeptical about my Autism or saying I have ‘Autism light’ this is not an uncommon experience. A lot of the difficulties that Autistic people face are hidden or masked especially in women on the spectrum. The common phrase that ‘everyone is a little on the spectrum’ also doesn’t help. The spectrum is a spectrum of people with Autism, you may have had some experiences that Autistic people experience but that does not make you Autistic. Just as having diarrhea a few times does not mean you have a chronic bowel disease.
‘But you’re so social’
I am not unable to be social because I have Autism, I am not unable to have different kinds of relationships with people. Socialising does not come naturally to me: I am not shy, I don’t feel nervous, I just don’t get it. It’s a skill I was born without, it’s a skill I learnt; you can thank my ability to participate in small talk and engage in everyday conversations to years of study and practice. Even using facial expressions, eye contact and varying tone were things I have learnt that take an active effort.
You may have experienced that moment of walking into a group of friends who are throwing inside jokes and words you don’t know about. When you try and add to the conversation everyone stops to look at you then continues like you haven’t said anything. That feeling like everyone knows something you don’t, is something I experience in most social situations even in groups I have inside jokes with.
I struggle when people are ambiguous especially if they have asked me to do something. Something that may seem like common sense can be the equivalent of someone asking you to ‘put the thing on the whatsit’. Sometimes it’s because I see so many different ways of doing things. It took me a long time to realise that most of the time it’s not about how you do it, it’s just about getting the task done, but that’s still difficult for me to do. I am now better at asking for clarification – learning the source of my difficulties helped me put in better strategies.
Emotions have also been a great source of confusion to me, a close friend of mine told me she understood me so much better after a moment in the Big Bang Theory where someone said “Sheldon doesn’t have emotions” and she realised that was like me. Of course that’s not true, it’s not that I don’t have emotions, but I don’t have the same emotional reactions as neurotypical’s.
It took me a long time to realise that people had different emotions to me, for a while I tried pretending to have normal emotions – people seemed fooled but this in itself was exhausting. I did this without knowing that’s what I was doing, it helped that people would give you hints ‘oh you must be really sad about that’ ‘you must be so pleased’ etc.
Before I was diagnosed I would frequently burn out from socialising, I was trying so much to be like other people. Being myself more has helped me connect better with people I’m close to and people I meet.
You’ve probably had that moment where you get a present you don’t like, you open it in front of the person and have to pretend to like it otherwise they’ll get upset. That’s an emotion they are expecting, that is the feeling I used to have all the time. Initially I didn’t realise that people got upset if I didn’t seem to feel things, because that concept is crazy, think about it rationally in regards to the first example: I would not want to get someone a present they don’t like, so it’s much better for me if they let me know when I’ve got it wrong I’d rather know.
I have studied people since I was very young, you may know obsessions are a big part of autism, mine is people and how people work, initially looking at social interaction and emotion later branching into psychology and neuroscience. It is a very satisfying obsession as there is always more to be learnt; people are intensely complex and all in different ways. I find patterns in behavior and I see things that other people don’t. This isn’t always a good thing, apparently the question “why would they do that?” isn’t always meant to be answered.
Obviously this obsession has aided my social ability, however it can also hinder it in some cases. I can get so wrapped up in everything behind an interaction I no longer know how to interact. Misunderstandings are inevitable: however I can find them excruciating – I don’t use that word lightly – I have strategies and looking at them as a way of learning helps.
Sensory issues are also a large part of autism, imagine for a moment a baby is screaming right next to your ear and someone is poking you, now think about having a conversation while this is going on, difficult right, well imagine the person you are talking to can’t hear the baby or see the poking. This is sort of what a sensory overload is like, it can be the smallest of things but it makes seemingly easy things feel like wading through treacle.
I have a whole host of coping mechanisms for the different aspects of my Autism, I have also been lucky having supportive family and friends throughout my life. I have a large amount of anxiety about different things, but I have a high self-esteem (some may say too high), which is due to the support and understanding of family and friends. I have only briefly touched on some of the things I experience and if you have any specific questions feel free to ask them.
Below are link’s to some websites with more information about Autism that I have enjoyed and found useful:
An illustrated explanation of the Autism spectrum: http://theoraah.tumblr.com/post/142300214156/understanding-the-spectrum
If you are a female and felt the things I was talking about applied to you this website has a list of female Asperger traits that I found useful: http://www.help4aspergers.com/pb/wp_a58d4f6a/wp_a58d4f6a.html
Also these are a couple of excellent female bloggers with Autism worth a gander: http://aspertypical.com