Aspergers and physical awkwardness.

This topic was prompted by a “selfie” photo that I uploaded yesterday to a Facebook group for adults with Aspergers Syndrome that I belong to. My photo was surprisingly complimented by several people on the group which was lovely. I was nervous when I first uploaded it but a lot of other group members were doing the same thing and I do like to match names to faces so I thought I’d give people the chance to match my face to my name.

I do not photograph well. When I know that someone is taking a picture of me, my pose ends up being awkward and I either grin without showing any teeth which makes me look a bit like a dolphin or I look far too serious. At least, with a “selfie”, I can readjust the camera several times to get a shot in which I look half decent. I am under no illusions-I know that I am physically awkward. I have small eyes that often look half closed in photographs. I often move around in an awkward manner too-like a lot of people with Aspergers, I have physical coordination problems which were originally diagnosed as dyspraxia so I have an awkward gait and run very awkwardly. I often struggle with tasks that require manual dexterity, fine motor skills and hand to eye coordination, often taking twice as long as most people to complete them. I have noticed that coordination problems appear to be a lot more significant in people with Aspergers Syndrome than people with severe autism. I am unsure of why this is the case but find it fascinating.

Of course, not every person with Aspergers has coordination problems but, from discussions I’ve participated in on online forums about this topic, I know that there are a high number of people with Aspergers out there who are viewed as “clumsy” and “physically awkward”. I believe that this is one of the causes of low self esteem in a lot of people with Aspergers. I have heard Aspergers described as “social and physical awkwardness all mixed in together” before and, to me personally, that definitely sums me up! I always feel like there’s nowhere in the world that I really fit in comfortably-the best I can do is observe how other people interact and try and imitate this. I have always felt awkward and ill at ease in the world. My physical awkwardness doesn’t help matters. I have poor posture and trying to correct this is painful for me. I have been told by a chiropractor that the two sides of my body don’t work in sync with each other and I have been told by an osteopath that my shoulders are hypermobile (although I can’t see any evidence of that in everyday life). My handwriting is illegible to a lot of people and those that can read it have to take a long time over it. I have heard all the jokes about people having to be drunk to read my handwriting as that’s the only way it makes sense to them! I usually laugh along with these jokes but I do think it’s unfair that people can write insightful pieces of work which are then discounted because their handwriting takes more time and effort to read than people are prepared to give. I mainly communicate via computer rather than through handwriting now but there are times when I have to use handwriting, particularly at work.

This blog post is not really educating anyone in a purposeful manner-it’s just me explaining a bit more about my physical coordination problems. However, I would like people to take from it that Aspergers involves a whole lot more than social awkwardness-in fact, I believe that the social and physical awkwardness I have is directly related to underlying neurological processes that affect the way I perceive and process information and act on messages that my brain is sending to me. If you know someone with Aspergers who struggles physically, please understand that it is likely to be related and be patient with them.

Aspergers and Sleep

First of all, I would like to wish my readers a Happy Easter weekend full of happiness.

Now it’s time to move on to my main blog post. I was thinking through what to write about on this blog when I realised that I had not yet covered the issue of sleeping patterns. Poor sleeping patterns are extremely common in people across all levels of the autistic spectrum. Personally my sleeping pattern is rather erratic-I go through phases where I don’t sleep well at all alternated with phases where I sleep solidly for up to twelve hours. I also take a lot of daytime naps which I am trying to cut down on as I know they are part of the issue as I then don’t feel tired at night time.  A lot of the time, how well I sleep depends on two factors. The first is how stressed or anxious I am at the time. Like pretty much everyone, autistic or not, anxiety and stress prevents me from sleeping properly. Thoughts continually run through my head over and over again and, no matter how tired I am, I can’t relax enough to fall asleep. There are nights where I get so frustrated because I am so exhausted but my mind still won’t let me sleep. The second factor is how much of a good read my current book at the time is. I always, without fail, read something on my Kindle before settling to sleep. Like most people with Aspergers, when I get absorbed in something, hours can pass and I won’t notice because I’ll still be fixated on what I am doing. I have, on numerous occasions, read entire 300 to 400 page books in one night because the storyline is so gripping or the memoirs are so heartbreaking that I just have to see how they finish. By the time I have finished the book, it is 3 am and I am wondering where all the hours have gone!

People have suggested sleeping tablets to me in the past. However I am against sleeping tablets personally, only because I have a fear of falling into such a deep sleep that I will sleep through my alarm and be late for work. Also I personally don’t want to become reliant on them although I accept that, for a lot of people, they are fantastic. There are lots of other suggestions for improving the quality of sleep-unfortunately most of them are stuff that I find difficult to do. I have a TV in my bedroom that I watch late at night if there is a programme on which interests me and I sleep with my mobile phone on the pillow next to me which I know experts say prevents people from getting good quality sleep. I know that I shouldn’t sleep so close to my phone but it links in to my fear of sleeping through an alarm and being late for work. I personally find that, if my phone is right next to me, the alarm is so loud that I can’t miss it. The only issue is that I am a fidgety sleeper and my phone usually ends up somewhere in the bed so I wake up in the middle of the night and have to frantically search for it before I can settle back to sleep. I tend to avoid drinking late at night as I know that, if I wake up to go to the bathroom, I will be awake for a couple of hours afterwards whereas other people would be able to settle straight back to sleep. If I am really struggling to get off to sleep, I put on a Youtube video of relaxing music which lasts for three hours! That usually sends me to sleep within half an hour but I have fallen asleep listening to it and woken up while it was still playing before. Also I would recommend plugging in your phone if you use something similar to get you to sleep as it is a real drain on the battery. I know that I should invest in a CD player and CDs of relaxing music-perhaps that is a present idea I could give my relatives for my birthday and Christmas as I always get told that I am hard to buy for!

I know that a lot of people on the spectrum who have erratic sleeping patterns are prescribed melatonin to aid sleep. I have never tried this as I feel that, although my sleeping pattern is erratic, it’s not erratic enough to qualify for such measures. I have also read that milk is a good aid to sleep. Unfortunately for me, I don’t drink milk on its own as I don’t like the after taste it leaves in my mouth and I’m guessing that adding flavoured powder to make it a milkshake would be counter productive because of the sugar content. I do sleep better when I’m staying at my mum’s house than I do in my workplace accommodation. Perhaps that’s because I worry less about work when I am at my mum’s. I don’t sleep well in unfamiliar beds at all, even if they are really comfortable hotel beds-just knowing that I’m not in my own bed is enough to stop me sleeping well.

For people who struggle with sleep, I think the above suggestions work well if you can stick to them-my problem is sticking to them. I think it is extremely important for everyone to get good quality sleep but, when people on the spectrum struggle to sleep, it magnifies our other problems as we are more likely to be unable to tolerate sensory stimuli or tolerate social interaction if we are exhausted. Sorting sleeping problems is never quick and easy but, hopefully, in time, we can all get a good night’s sleep!

 

Bailey

Bailey

Bailey

Bailey

Bailey

Bailey

Bailey

Bailey

Bailey doing his favourite activity, cuddling.

Bailey

Bailey

Bailey settling in.

My new adorable kitten Bailey

My new adorable kitten Bailey

Bailey, our new adorable cream British Shorthair kitten!

The double standard we have to live with every day

The idea for this post came to me at 5 am this morning following a works night out to a seaside town around 40 minutes away from my workplace. Now I am not the most social person around by any means but I do like to make an effort and go out for works parties because I love spending time with my work friends. Last night was a good night but it would have been ten times better if I wasn’t in a subdued mood due to a suspected chest infection. The night took place in a nice little bar, a lot smaller than the average nightclub-it was basically a cocktail bar with a dance floor.

Now I will admit to something here-I don’t do dancefloors as a rule. It’s a combination of too many people, some of which I won’t know, and the fact that being so crowded means it is inevitable that some form of physical touch will occur. I just can’t enjoy it-I spend the whole time trying to maneuver around the dancefloor in ways that mean I avoid contact with other people as much as possible. That said, I do get up on the dance floor at times when enough people have persuaded me to but I usually dance slightly away from other people. Most of the time, in places like this, I stay seated where there are seating areas and I have people to sit with who I know.

Anyway, I digress. My main point is that, as I spend a lot of time in these environments observing rather than directly participating, my sober mind (I never drink alcohol) is continually noticing behaviour that people are getting away with that autistic people are taught, often extremely firmly, not to do. The main example in a club environment is unwanted physical touch. Every time I go out to one of these places, I notice inebriated men trying their hardest to successfully get a girl to notice them and take an interest in them. They appear to have absolutely zero respect for personal space and boundaries of socially acceptable behaviour. They make nuisances of themselves, all in the desperate pursuit of a female. I am not saying that it is just men who behave in this way but my main point is that people with autism who have issues with getting too close to other people’s personal space and inappropriate touching such as hugging people they don’t know are continually taught, quite rightly, not to touch people they don’t know and to keep their hands to themselves when, on every Friday and Saturday night, men and women who, in most cases, don’t have any autistic spectrum condition, are breaking these rules of socially acceptable behaviour in every nightclub in the country. Now, personally, as someone who has issues with touch as one of my sensory sensitivities, seeing any sort of unwanted touch makes me recoil but I can imagine that it must be incredibly confusing for any adult with autism who has been taught not to touch people they don’t know to then see people breaking this rule in wider society (not just in nightclubs). Although I have never been drunk myself, I am aware of the effects that alcohol has on someone’s behaviour and that some (most?) people lose their inhibitions when they have had too much to drink and behave in ways that they never would usually but this is not the only example where people judge those of us on the spectrum for certain behaviours yet either do the same themselves or claim to have no issue with the behaviour and most of the other examples I can think of take place every day in people that are sober.

One of the main examples I can think of involves honesty. So many people say they respect honesty, yet, when someone with autism gives them their honest account of something, they take offence. This always confuses me-why ask for an honest opinion if you are going to take offence at it? Over the years, I have learned through being taught methodically about how small “white lies” can save someone’s feelings or prevent a situation from escalating but it continues to baffle me why a lot of people on the spectrum are penalised for their honesty by the very people who claim to have respect for people who speak honestly. I know that some of the ill feeling may be because of miscommunication but I still think that, if you claim to respect honesty, you should not lash out at the person who is giving it to you. I think the problem is that people on the spectrum are quite often too honest for other people. I saw a picture on Facebook recently that had the phrase, “Why do we fear honesty but praise deception?” That phrase struck me as something which is so true. Another thing I have found over the years is that people value honesty from people who are the most similar to them but don’t value it so much from those who are often known to be eccentric.

I was always brought up with the underlying motto of life being, “Treat others how you would like to be treated yourself”. I always try to be patient and kind. I don’t always succeed-I am not perfect-nobody is-but I never intentionally try to make anyone feel bad about themselves. A lot of other people I know, both autistic and non autistic, are like this but there is a worryingly significant minority of people in society who now seem to have no care at all about how their words and actions may impact on other people’s wellbeing. The news is full of stories about people committing vile crimes against other people and schoolchildren being bullied to the point of suicide. Such people are sometimes deceptively referred to as “strong characters” when, in fact, as an online friend of mine with Aspergers pointed out once, not caring at all about what other people think is not the sign of a strong personality but, instead, the sign of a selfish one. Some people would argue that I am too passive and try and please people too much (indeed, this is probably true) but I would rather be known as being too passive than for being abrasive and unsympathetic. Assertiveness is one of the more subtle social skills to master and I am still not fully there but I would rather be seen as caring than the opposite. Too many people don’t stop and think about others. A lot of these people don’t have autism or Aspergers Syndrome and yet have the audacity to accuse us of lacking empathy for people when they act in such cruel ways. How little empathy do you have to possess to be capable of behaving with zero compassion?

When those of us on the spectrum learn social skills, we learn them in a fixed way and, for those of us who were lucky enough to receive an early diagnosis, usually in therapeutic sessions-essentially “this social skill is relevant to these particular situations” and so on and so forth. This is all fine until we start practicing them out in wider society and discover that most people don’t play by the same rules that we were taught. I guess the advantage people who aren’t on the spectrum have of being able to instinctively read and pick up the nuances of social situations means that they can change the rules at any time based on their analysis of the situation. The autistic person who has learned to behave in a certain way in a certain situation is then left feeling completely confused when their behaviour is misunderstood because the rules have moved on. We are continually chasing the new rules and being left floundering day after day after day, year after year after year. We are the ones accused of being odd yet how odd is everyday life with its ever changing scenarios? Something is all right with one person at one time but a complete faux pas with another person the next day-think how confusing that is for somebody whose brain does not pick up the nuances in social situations. I understand that everybody is different and therefore upset and offended by different things but, if you are in the situation where somebody who you know or suspect to have Aspergers/autism has upset you or offended you inadvertently, please explain to them exactly what has offended you. I know that, personally, I have a fantastic memory and will remember what has offended you and avoid replicating this in the future. Yes I am not denying that there are people with Aspergers out there who, just like some people without Aspergers, know they offend people but don’t care and the best thing to do with such people is to try and avoid getting into arguments with them as much as possible but, I promise you, the majority of us with Aspergers do care about other people’s feelings and don’t wish to offend or upset them.

Double standards exist everywhere in our society, not only between those of us who are on the spectrum and those who are not. It is a sad fact of life that the dominant group in society will set out their often everchanging norms and values as the only ones that matter and then often break these rules continually without consequence yet, when those of us who are not in the majority make such mistakes, we are treated as though it is the worst thing we have ever done.

Please remember that we are trying our hardest to succeed in life and teach us where we are going wrong but don’t penalise us unduly and take a look at the way you interact with people too. I think everybody needs to stop and reflect on the impact their words and actions can have on other people and try and be the kindest, non judgemental person they can be and the world would be a much better place.