Self esteem and Aspergers

Self esteem issues are very common in people on the autistic spectrum, from what I have noticed. Indeed, self esteem issues occur with most learning, neurological and physical disabilities-basically anything that society sees as odd or different. In this post, I hope to explain the issues that low self esteem causes in people with Aspergers in particular.

The primary reason that most people with Aspergers, including myself, have self esteem issues, is due to bullying and people not being willing to make allowances for our social mistakes. Personally I have never met anyone with Aspergers who did not experience bullying in their school years and often beyond. Being socially awkward identifies us as targets in the playground. The fact that a lot of people with Aspergers are also physically clumsy doesn’t help matters at all. I always found that certain aspects of my Aspergers made me more sensitive to childhood bullies than other people. One example is the fact that I am a very literal thinker. Until a couple of years ago, I couldn’t understand that people would say spiteful and malicious things that they knew to be untrue just to hurt somebody’s feelings. I always assumed that people were just being honest and genuinely thought that I was ugly or a freak. If you are told something enough times, you internalise it and it becomes part of your self image. Many children with Aspergers are miserable in their school years-they are often isolated and excluded from playground games. If the only reaction your peers have towards you is to walk away, how are you supposed to develop a healthy self image of yourself as someone who is nice to be around? Of course, having these sorts of self esteem issues lead, in turn, to low self confidence, particularly in social situations where you feel that others will be judging you and looking for your flaws so that they can take great pleasure in pointing them out and ridiculing you for them. This compounds our social awkwardness and thus the vicious circle continues. At almost 27, I am still suffering from the effects of experiences I had before anyone even knew that my difficulties had a name, I still have days when I think the world would be a better place without me in it although, thankfully, these days are now few and far between. I always say that, until you have looked in the mirror and genuinely despised the person staring back at you, you will struggle to understand just how pervasive and destructive low self esteem can be. This is something that not a lot of people realise I struggle with as I tend to keep it to myself in my off line life,

Also a lot of people with Aspergers have a high level of self awareness and I count myself in this group. Whilst, in ways, this is a positive attribute to have, as it has enabled me to find a number of coping strategies to minimise the negative impact that Aspergers can have on my life, it also means that I am my own harshest critic. I am fully aware of how I come across to other people and of the weaknesses that I have and this means that I can often have a tendency to be incredibly harsh with myself if I don’t reach what I see as “typical” social standards. I see my friends socialising and envy the ease with which they can do so. Over the years, this has led me to become rather despondent and, although my social skills have improved immensely since my diagnosis, with the help of social skills sessions and patient friends and relatives, I still berate myself at times for the fact that I still have weak social skills. I try to remember at these times that Aspergers is a social and communication disorder and therefore it is amazing that I have made the progress that I have within the context of my diagnosis but this doesn’t always help and I just have to wait for the low mood to pass.

The final main reason for low self esteem in those of us on the spectrum is perhaps the most damaging one-it is the fact that there are people out there who wish to take away the essence of our beings and “cure” us. I wrote about this in detail in my “Cure Debate” post so I won’t go over it again too much but suffice to say that, if you are aware that every little quirk and habit you have is scrutinised and labelled as an autistic trait and thus something to be “dealt with” and, in some cases, punished by the use of aversive therapies, you don’t exactly feel good about the way that you are. If you spend your whole life aware that people disapprove of the way you are and think it would be better if so much of your life simply vanished, you’re not exactly going to feel like you have a right to be happy and to be proud of the achievements you have made. I know that a lot of people involved in the cure debate will argue that they want a cure primarily for classic autism rather than Aspergers but my point remains that it is still damaging to someone’s self esteem to want to change so much of their personality. As I mentioned before, I support attempts to make the lives of people on the spectrum more enjoyable by minimising the negative impacts of autism on their lives but this is completely different to the idea of curing them for the reasons that I have mentioned in my post on that debate.

Now we come to the devastating point of all this-the impact that having such a poor self image can have on peoples lives. A very high number of people with Aspergers have mental health issues such as depression and anxiety as described on the National Autistic Society website. 

http://www.autism.org.uk/working-with/health/mental-health-and-asperger-syndrome.aspx

As a member of several Facebook groups for people with Aspergers and an online community for people on the spectrum, I have also come to know that there is a worryingly high number of people in the Aspergers community whose childhood memories are so distressing that they fit the diagnostic criteria for Post Traumatic Stress Disorder. It is also a depressing fact that people on the autistic spectrum are more likely to commit suicide than those who are not on the spectrum. Indeed, some reports have cited that, in children, those with autism are up to 28 times more likely to take their own life than those without autism as discussed on this blog by Lynne Soraya.

http://www.psychologytoday.com/blog/aspergers-diary/201303/new-research-autism-and-suicide

These are the people who go through life feeling rejected at every turn, who are turned down from jobs and are then made to feel bad about themselves for having to rely on financial assistance from the State when, if they were given a chance to prove themselves in the first place, they would be able to hold down a job, who spend their days despising who they are and wishing for a tiny bit of relief from their racing thoughts and who take their feelings out on themselves in a variety of ways. These are the people who society often views as “outcasts” but, ironically, the reason why such “outcasts” exist is because society is so fixated on the “typical” that it shuts out those who it deems not to meet its arbitrary standards.

Next time you see someone with Aspergers or autism, please remember how they may be feeling inside and have compassion for them. We struggle daily to get by in a world which often seems to revel in making us feel like failures and sometimes just a small amount of kindness can make our day so much better.

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Why I stim

This post was requested by someone close to me who wanted to understand more about why I display some of my stimulatory behaviours which other people often view as strange or bizarre.

I have a lot of self stimulatory behaviours. I have a habit of biting almost anything I can lay hands on, particularly my staff ID badge at work and biro pens (I have broken a lot of them because I will bite through the end and they will splinter and be unsafe to use). I bite my nails too (although I am trying very hard to stop) and people will often laugh at me when I mention how orally fixated I am! I constantly have tassels from hoodies or jackets in my mouth and, over the years, these will disintegrate completely due to me chewing them. I find the sucking sensation soothing and gnawing the edge of objects gives me a sense of relief when I am worried about something. When really stressed, I have been known to compulsively eat paper.

I also move around a lot-I pace, run the length of rooms over and over again, march instead of walking “normally” and sometimes will just get the urge to suddenly run, even when I am in the middle of a shopping centre or suchlike. When I was a child in primary school, I used to spin around in circles in the playground, clapping (which used to be another stim of mine but has greatly reduced over the intervening years). I struggle to explain why I do this to other people but I will try for the sake of this post. I experience a lot of pent up energy and pacing and running let it out. I often make up stories in my head and play them out whilst listening to music and pacing the hallways of the building I live in (the other residents here are used to it now and I only pace in the downstairs hallways where I won’t be disturbing anyone by treading on creaky floorboards!). I find that excessive movement helps my creativity and imagination. Oddly enough, when I get to the gym, these sudden bursts of energy desert me and I find it really hard to motivate myself to exercise on the machines! When something makes me angry (true anger (as opposed to frustration which I experience frequently) is a rare emotion for me but, when I do experience it, the force of it scares me), the only way I can get rid of that anger is to “burn it off” through running until I can feel calm enough to sleep.

I also carry out a lot of stims with my hands. One that I was very well known for at university was clasping both hands together with all 10 fingers interlocked with the middle finger of my right hand slightly raised and then tapping this finger repeatedly on the skin between the fingers of the opposite hand. As I have a tendency to stare at my hands while I am doing this and often mumble to myself as well, people used to refer to it as “talking to the man in your finger”. The reason I do this is simple-I like the tapping noise that skin on skin makes and clasping my hands together also makes me focus on something other than being anxious about what is happening in my life at that moment. When I am in an awkward atmosphere, I will play with my hands repetitively, twisting them  and staring down at them. Again, it helps me focus on what I need to say because it gives me something else to concentrate on.

Rocking is not a big one for me although I will rock sometimes when watching TV on my own. I will bounce around if there is something exciting happening on TV and, if watching TV alone, I will sometimes get up, run around and then throw myself back onto the sofa or bed when something on the programme has made me happy. I don’t do this when watching TV with other people as they don’t understand where my sudden energy impulses come from and I often get frustrated trying to explain it to them verbally.

One of my other main stims is circling newspaper articles in ink after I have read them. I will circle every line. For me, this is a sensory release as I do it in a very fast and frenzied manner. Again, it is a way of releasing pent up energy and frustration but it also reinforces the information in my mind as it means that I read each article twice. This one goes in phases-I went through a couple of years where I did it every day. Now that I’m working, I don’t always have the time to do it so it’s every now and then that I do this now.

What I feel obliged to point out here is that people without Aspergers or autism stim too. There are loads of people out there who “talk with their hands”, gesticulating wildly when talking-that is a form of stimming. People have a tendency to fiddle with everyday objects such as Blu Tac because they find it soothing to have something to fiddle with-again, this is stimming. Stimming seems like one of those traits that is viewed as “normal” when other people display it but “odd” and “strange” when people with autism do it. I guess those of us on the autistic spectrum stim in ways that are not seen as “normal” by other people or are deemed to stim too much.

My final thought on the subject is this-please remember, next time you see a child or adult on the autistic spectrum stimming, consider that this is helping them to get through life in a confusing, overwhelming and often hostile world. It is a coping mechanism for many on the autistic spectrum. I do not try and stop other people’s coping mechanisms so please respect mine. My view is, if it is not harming anyone, let it be.

Thanks for reading.

Gender differences in Aspergers

As a female with Aspergers, I often get frustrated when people neglect females on the autism spectrum and concentrate almost solely on males when writing literature or when carrying out research studies. Official estimates for the male to female ratio of people with autistic spectrum conditions vary between 2:1 and 16:1, depending on which source you get the information from. It is widely accepted by medical professionals that, among those who also have a degree of learning disability, the male to female ratio is not as biased towards males as it is in people who have autism but no learning disability. I personally believe that there are just as many females as males with Aspergers Syndrome but females are extremely under diagnosed for reasons which I will explain in this blog.

This page on the National Autistic Society website gives some fantastic reasons as to why a lot of females are misdiagnosed or not diagnosed at all. http://www.autism.org.uk/about-autism/autism-and-asperger-syndrome-an-introduction/gender-and-autism/women-and-girls-on-the-autism-spectrum.aspx I agree with a lot of their points. What I have noticed is that a lot of women who are on the autistic spectrum struggle with social skills but not in such an extreme way as men can. There is the whole argument that women are wired to be better in social situations than their male counterparts so women with autism, whilst still at a disadvantage, can cope slightly better. A lot of females with autism and Aspergers are natural mimics and can observe other females in social settings and copy their behaviours, meaning that their social skills never get picked up as concerning enough to be considered for an Aspergers diagnosis. Socialising can still cause these women extreme anxiety but they are capable of hiding it well and dealing with the emotional fall out at home rather than in public. Of course, there are men on the spectrum who are also capable of and willing to mimic other people’s social behaviour but this tends to occur a lot more in women. I am not trying to say that females have it easier because they can mimic social behaviour-other women can be extremely harsh about women with Aspergers who are often seen as odd. I have personally found that women are less likely to forgive social mistakes then men and bear grudges for a lot longer when you inadvertently offend them. I am simply trying to point out that those with Aspergers who mimic well can miss out on a diagnosis because they can come across as having good social skills. I have learned social skills over the years but they do not come naturally to me and I know that I come across as very aloof when I am tired because I simply don’t have the energy to communicate with people. This is the aspect of Aspergers that people find the hardest to understand in my experience as people believe that, as they are inherently social beings, everyone else is too and don’t understand how tiring socialising can be for someone on the spectrum.

I find a lot of points on that list resonate deeply with me. I am always happy to socialise with friends but often they are the ones that initiate it. I have, in the past, been scared to enter a room where I know that some of my friends are because I felt very self conscious entering a room alone. I have now overcome this particular anxiety and will happily enter a room and chat to the people in there if I know them but, for years, it was an issue. I have an extremely vivid imagination and had a whole extended family of imaginary friends when I was a child. I used to day dream elaborate stories of their lives and add more characters when I felt that their lives were getting boring! I read fiction books a lot and enjoy visualising myself in the story. I often day dream about entering another world and what that would be like. 

Not all of my interests have been shared by my peers-I don’t know many other women who, during childhood, were obsessed with pregnancy and childbirth and the different makes of pushchairs sold in Mothercare but I do know females with Aspergers whose special interests were shared by other girls without Aspergers-horse riding, dance and baking, for example. The fact that special interests are not noted as concerning unless they are unique says a lot about society in general in my opinion. Why is a special interest in train timetables or Maths seen as concerning and strange whilst a special interest in animals or cooking is viewed as perfectly fine? All of these interests are often obsessive in someone on the spectrum but the first 2 are noticed by society more than the final 2.

I believe that females with Aspergers suffer deeply from the consequences of trying so hard to fit in. This quote sums it up perfectly-“The fact that girls with undiagnosed autism are painstakingly copying some behaviour is not picked up and therefore any social and communication problems they may be having are also overlooked. This sort of mimicking and repressing their autistic behaviour is exhausting, perhaps resulting in the high statistics of women with mental health problems.” (Dale Yaull-Smith, 2008). A worryingly large percentage of adult women on the autistic spectrum have issues with anxiety and poor self image which can lead to certain destructive behaviours. If you live your whole life believing, that as a woman, you must be social and able to interact well in all situations, you inevitably feel as though you are constantly falling short of these expectations. As mentioned before, men, in my experience, are a lot more accepting of social difference even though, initially, it is girls who are more likely to befriend the child in infant school who is eccentric and struggles to make friends. Some women are simply cruel and vicious when it comes to other women who struggle socially and the effects of this can be devastating. 

This YouTube video also describes the manifestations of Aspergers in women very eloquently. Whilst there are common symptoms shared between everyone on the spectrum, to varying levels, hence the diagnostic criteria, there are ways in which traits show themselves in women that are completely different from how they show themselves in men. 

http://www.youtube.com/watch?v=iIgsJ6uSgMo (you can disable the sound if it is annoying you).

I share a lot of these traits and a lot of these traits are not considered by medical professionals because they still think that people with Aspergers fit a narrow stereotype (see my earlier post-Debunking The Myths Of Aspergers). People who are sensitive to criticism and take things personally are not often seen as having Aspergers, for example. Traits such as these can often be exhausting. I often have thoughts racing through my mind and find it very hard to fully relax. I find this video very hard to watch as it reminds me of just how many traits I have and seeing it laid out in this format reminds me of how many issues I live with. It is a fantastic video though-many thanks to Samantha Craft for making these traits widely known.

I know that a lot of people reading this will think, rightly, that males can be under diagnosed too. People who are not diagnosed until adulthood have often learned social skills in order to not become a target for school bullies, regardless of their gender. Other people may think, when watching the video, that a lot of females without Aspergers share these traits too which I wouldn’t disagree with but, like everything, it’s about how often these traits are experienced. 

I guess my main point is that there are a lot of females out there who are living with undiagnosed Aspergers. Perhaps they have been diagnosed with anxiety or Obsessive Compulsive Disorder or various personality disorders and are treated for these but still feel different and don’t understand why. They can often feel highly isolated and struggle with depression because their needs have not been picked up and therefore are not being met. Please have patience with us-this world is an exhausting place and other people’s judgements make it so much harder.

Thanks for reading!

My review of the Curious Incident Of The Dog In The Night Time theatre production

Yesterday evening, I saw The Curious Incident Of The Dog In The Night Time theatre performance at the Apollo Theatre in London with my mother. For those who don’t know the story, The Curious Incident Of The Dog In The Night Time was a short novel written by Mark Haddon in 2003. The story is written through the perspective of a 15 year old boy with Aspergers Syndrome (although the words Aspergers or autism are not mentioned in the book at all), Christopher Boone, who, admittedly rather stereotypically, displays an extremely high level of logic and intelligence, particularly in the areas of Maths and Science, and struggles to understand other people’s communication which can lead to him lashing out at people as he hates being touched and, during the story, several policemen and concerned passers by try to move him by placing their arms on him. Christopher finds his neighbour’s dog, Wellington, dead in her garden having been killed with a pitch fork and decides to investigate who killed him. During this investigation, he also comes across letters hidden in his father’s wardrobe that were written to him by his mother, who he had been told was dead, and kept from him for 2 years. His father then admits that he had killed Wellington after an argument with the neighbour whom he had been dating. Christopher then panics and leaves to find his mother and her new partner, Roger, who was the husband of the neighbour whose dog was killed, in London. I won’t give away the whole story from that point but there is a happy ending for Christopher.

The play itself has won 7 Laurence Olivier awards and is highly praised by theatre critics. I will start with the negative point that I picked up on and will finish with the positive.

The first aspect of the performance that I didn’t agree with was that all the staff were wearing T shirts with the slogan, “I find people confusing”. This is the main phrase associated with both the book and the play and I know that it is a promotion tool to have all the staff wearing these T shirts but the logical part of me couldn’t help wondering why they were wearing these T shirts when they probably understand people ten times more than the average person on the autistic spectrum. I guess it’s my own literal thinking that makes me wonder why someone would wear a T shirt with a slogan on it that is not true to them. I liked the T shirts themselves and, if they had one in my size, would have bought one but that’s because it’s an aspect of Christopher’s life that I can identify with and understand. I guess the reason why I saw the wearing of these T shirts as a negative point can be explained by the fact that I dislike people trivialising what it means to be on the autistic spectrum and explaining away autistic traits as traits that everyone experiences at certain times (but that’s a post for another day!) It just made me feel slightly uncomfortable.

Now, onto the positives, which are many and make the show absolutely brilliant and amazing to watch.

I liked the fact that the production team use strobe lights and loud crashes and voices talking over one another at an increasing volume to illustrate to the audience, in a way that they can understand, what Christopher experiences when his senses are being overwhelmed. However, I do feel that any person on the spectrum who does have extreme sensory sensitivities (as I have mentioned before, mine are not extreme) would probably be unable to sit through the show because of those effects which would be a shame because there are so many aspects of Christopher’s life that would resonate with a lot of people on the autistic spectrum.

I thought Mike Noble, who played Christopher, portrayed someone with high functioning autism fantastically. He must have spent a long time studying autistic behaviours to be able to portray them so vividly. The constant stimming with his fingers is one example, as is twisting the tassels on his hoodies. With me, it’s constantly putting these tassels in my mouth and chewing them until they disintegrate but the reason behind it is the same in both cases-it is something to concentrate on while having to do something out of your comfort zone, such as speaking with strangers or carrying out a particularly complicated task. He also speaks incredibly literally and points out that he notices all the tiny details that most people never pick up on. Whilst not all people on the autistic spectrum will share Christopher’s traits (indeed there are some that I don’t share), a fair few of his traits will be able to be identified in the lives of other people with autistic spectrum conditions.

I also thought that his father, Ed Boone, played by Trevor Fox, was extremely realistic in his portrayal of someone bringing up a child with Aspergers as a single parent. He displayed frustration and compassion in equal measures and there was one scene where he was extremely tender towards Christopher, after Christopher had been sick down his clothes and needed to be stripped out of them. His dad explains that he needs to touch him but that it will be OK and then goes on to remove Christopher’s hoodie and T shirt with such gentle precision in order to not agitate him. My mother said that she could relate very well to Christopher’s dad, in particular, so it is a show for the parents of people with autistic spectrum conditions as well. There was one light hearted moment where Christopher is talking about his obsession with being an astronaut and his dad interrupts him, saying, “Christopher, mate, can you just give it a break, please?” That took me back to my childhood when I would talk about the same topic over and over again because I was so fascinated with it and could not understand why nobody else was until somebody would tell me to give it a rest. Another aspect that really resonated with me was when Christopher drew a face with a raised eyebrow and pointed out how it could be a sign of flirtation or that somebody finds you amusing-I understood that completely as it is so true that facial expressions mean different things in different contexts and that is why they are so hard to read accurately.

The logistics of the performance were fantastic also. Certain members of the cast passed right in front of our seats to gain access to the stage which was really good-I have never been to a show where they have done that before! The props were basic but the actions of going through doors and looking under his father’s bed were supported by people on the stage who acted as doors and held up items that were found under his father’s bed. The set itself was a depiction of how logical Christopher’s mind is with no colour other than what the cast were wearing. Christopher draws on the set with chalk to solve the mystery of who killed Wellington. Some of the seats in the audience were covered with white sheets and labelled as “Prime Number Seats” due to Christopher’s obsession with prime numbers. I was quite jealous that I wasn’t in one!

Overall, I thought the play was fantastic. Christopher is not typical of some people with Aspergers Syndrome but, as Mark Haddon himself pointed out in the programme, “I’m a little uneasy when, as occasionally happens, it is used as a textbook, and handed to policemen or social workers to give them some insight into the behaviour of people they might come across in their professional lives”. He freely admits that there are people on the autistic spectrum who cannot identify with Christopher (and I have had conversations with a couple of them about the book where they have said they hate it because the beahviour in the book is so unlike them) but points out that people assume “that there is indeed a correct representation of someone with the condition”. He does understand that Aspergers affects different people in different ways and interacts with other factors in an individual’s life to have its own unique manifestation. No two of us are the same!

To conclude, I would recommend this play to anyone but, be warned, it is highly emotional and intense viewing! I think everyone who lives with autism/Aspergers, either themselves or through a family member, friend, student etc, could probably recognise some of Christopher’s traits and begin to understand more exactly where they come from and why they occur. It is a fabulous play and I would definitely go and see it again!