“Doesn’t everyone do that?”

First of all, I hope everyone had a great Christmas and I wish you all a Happy New Year as my next blog post will be in 2014!

My blog post this week was inspired by a post on another autism blog which is fantastically written and hugely touching (see here-http://autisticchick.blogspot.co.uk/2013/12/smaller.html). Reading this blog post was like reading the story of my life. I empathise completely with the frustrations this girl feels and I often feel the same as she does when people dismiss Aspergers as insignificant. Reading the post made me realise that the time was right for me to write about this issue on my own blog. I had been debating writing about it for a while but this finally inspired me on.

I know that this post is one of my more controversial ones but I feel that it is an issue that needs exploring. I will start by saying that I understand the reason behind why many people explain away traits of Aspergers Syndrome as something that everyone experiences-it is the way that a lot of people attempt to understand the complexities of the Aspergers mind. People have a tendency to rationalise everything that they come across in terms of their own experiences-they meet someone with Aspergers who explains about their social difficulties and make the comparison to a time when they felt shy and awkward at a social occasion-to them, that is similar but, to someone with Aspergers,it’s an insulting comparison. Just because I understand where the phrase “Doesn’t everyone do that?” comes from, it doesn’t mean that I don’t find it hugely frustrating. As Autistic Chick mentioned in her blog, the key is in the words “frequency” and “severity”. To return to the social difficulties scenario, there is a huge difference between feeling shy and ill at ease for a brief period of time at a social occasion (which happens a lot to everybody but the most socially extroverted people) and feeling so anxious around other people that you feel physically sick, have anxiety attacks and count down the time until you can retreat into your own safe environment once more. This, of course, is not to say that everybody with Aspergers has such a sense of dread at social occasions (indeed, I always try and attend social gatherings so that I have shared experiences to reminisce about with friends but I still struggle in environments where I don’t know people and tend to stick to the people I do know at such occasions) or indeed that everybody who isn’t on the spectrum does not experience anxiety at such occasions but it serves as a good highlighting point for how extreme our difficulties can be, It is hugely frustrating when I explain to people about Aspergers only to be met with platitudes such as, “Oh, but everyone does that!”. It is an insult to everyone on the autistic spectrum to be told that our difficulties are not worthy enough of a diagnosis.

Aspergers is a difficult condition to live with and classic autism even more so. Everyday life can be very confusing and frustrating and I often feel like challenging those people who believe that autistic traits are shared by everybody and so aren’t worthy of any understanding or special consideration to live inside my head for 24 hours. I believe that they would understand at the end of that 24 hour period just how extreme my symptoms can be and how hard I have to work to appear “normal” so that I maintain a successful career and relationships. They would understand that there is a difference between being slightly apprehensive and nervous about doing something they find difficult and the sort of anxiety I experience where I cannot focus on anything else, become increasingly emotional and tearful and end up picking compulsively at the skin on my hands with both my fingers and, on occasion, my teeth as well. They would understand that there is a difference between being a little socially awkward and not being able to read the body language of someone stood right in front of you and therefore missing social cue after social cue. They would understand why my emotions fluctuate so much and why I need solitude on a daily basis, even if the only time I can achieve such a state is at night once I return from work and can have 30 minutes of uninterrupted reflection time before bed. Most of all, they would be able to see just how much I think over things and analyse them all the time. My mind is constantly thinking and analysing and I find it hugely difficult to completely relax. I understand the importance of socialisation and I am blessed to have very special friends who understand the way in which I interact but I also understand the need that a lot of us with Aspergers have for “alone time”. It is this part of society that frustrates so many people with Aspergers-why are people so concerned about the way we socialise? We would be fine if we were allowed to interact in our own way instead of being urged all the time to “be more social”. Society seems to favour the extroverted and those who are more introverted in nature, whether they have Aspergers or not, are often made to feel like they need to improve the way they interact with other people when, in fact, the world needs all kinds of people to function. 

I believe one of the positives about having had people claim that Aspergers traits affect everyone so many times over the years since Aspergers has been publicised in the United Kingdom is that I know how it feels and therefore would never say anything like that to people with other conditions such as Obsessive Compulsive Disorder (another condition that seems to attract the good old phrase, “Oh, I do that too!”). I know that my Aspergers has given me the traits of rigidity and obsession alongside a love of and indeed craving for routine but I also know that my experience with these traits in no way relates to someone with OCD and I know that to suggest such a thing would be insulting and dismissive of the problems that it causes them on a daily basis, the same as it is for those of us on the spectrum when people claim that our symptoms are nothing to worry about and that they are not worthy of a diagnosis.

My final statement is this-please, please consider how it might make someone with Aspergers or OCD or depression or anxiety feel to hear that their symptoms are experienced by everyone. I know that people may think that it is comforting for us to hear that our traits are shared by a lot of people in wider society but it feels incredibly dismissive and it also feels like we are being accused of over dramatising our symptoms when that is the last thing that we would think of doing. I don’t want my mind to be a tumultuous roller coaster of emotions and neuroses but that is (metaphorically) the card that life has dealt me so I have to deal with it as best I can. We need understanding, not dismissal and we need compassion, not rejection. 

“Stop taking things so literally!”

I have lost count of the number of times someone has said (often shouted, to be honest!) the above phrase in sheer frustration at the fact that I am not grasping the intended meaning of what is being said. I can appreciate how frustrating it must be to talk to someone who continually misunderstands what you are saying to them but the point that I am aiming to explain in this post is that it is equally as frustrating, if not more so, to a lot of people with Aspergers.

Without meaning to brag, I consider myself to be fairly intelligent so I get annoyed and angry with myself when I cannot understand the deeper meanings behind what someone is saying and have to ask for clarification or suffer the consequences of such a misunderstanding. Over the years, I have learned the intellectual and logical reasoning behind a lot of the nonsensical sayings that people love to use, such as, “Cutting off your nose to spite your face!” and, “Don’t bite my head off!” Indeed I do, on occasion, use statements that are not literally true and I also use sarcasm on occasion. What I tend to struggle with now are instructions that someone is giving me if they do not make them specific enough and phrases that have more than one intended meaning. I know that some people may consider me to be deliberately obtuse but this is not the case. I do genuinely want to pick up intended meanings instinctively, the way most people I know without Aspergers do. Trust me, the withering looks you get that make it plain that you are considered to be wasting someone’s time are not fun.

Of course, being literal minded has its funny side as well. One particular incident pre diagnosis sticks in my mind (you see, there goes the non literal saying!)  As a child, I was a frustratingly slow dresser, often delaying everyone else in the family when it came to being ready to go to school. On one occasion, I was standing outside my bedroom door half dressed. It was time to be leaving for school so my mother said, “Brush your teeth now and get dressed in the car!” I willingly obeyed what she had literally said. She had not said “Finish getting dressed in the car”-she had said “get dressed in the car” so, without questioning it, which, in hindsight I should have done but I was only seven, I took all of my clothes off and went to brush my teeth. The next time my mum came to check on my progress, I was standing with no clothes on ready to go and get dressed in the car. Of course, she had no idea what my thought process was at that point and got hugely frustrated with me. I remember thinking that it was very unfair that I had been told off when all I had done was follow the orders I had been given. Looking back at it now, it does make me and my mum laugh and I’m sure that it will be family legend for a long time but, at the time, I could not understand why obeying orders got me into trouble. These days, I am not so overly literal and would know to ask for clarification on what was actually expected of me but, at seven, I didn’t even know I had Aspergers let alone how to deal with the symptoms of it. That level of insight comes after years of living with a condition that gives you a totally different outlook on the world.

Please, if you know someone who takes phrases literally, don’t mock or belittle them and try not to get frustrated with them. To admit that the instruction they are being given is not specific enough for them to follow, knowing the reaction that may await them, takes courage. Would you rather they ask and complete the task to an acceptable level or that they don’t ask  and thus fail the task? A little bit of patience and understanding goes a long way.

I will not be writing on this blog until next Friday so Merry Christmas everybody. I hope your festive day is filled with fun and joy.

My response to Susan Boyle and her news of being diagnosed with Aspergers

Over the last week, a lot of attention has been paid by the UK press to a story that Susan Boyle of Britain’s Got Talent fame was diagnosed with Aspergers last year. The story that I read was this one but there are numerous other news stories dealing with the topic too. http://www.theguardian.com/music/2013/dec/08/susan-boyle-autism

I have to say that, like a lot of people with any knowledge at all of the autistic spectrum, I found Susan’s Aspergers obvious from the first time I saw her perform on Britain’s Got Talent. Although her voice is wonderful, it was obvious to me that she was not a natural performer and was finding the whole situation highly stressful. Her “mind blank” when she was trying to think of the word “villages” sounds similar to how I am in front of lots of people. Her behaviour when her sudden rise to fame became too much for her was also, to me, characteristic of someone with Aspergers. I know that, if I were to be in the same situation, I would most likely have reacted in a similar way. Most people with Aspergers value privacy extremely highly and also like to be in control of how events turn out. I can imagine that being unable to control this sudden surge of both media and public interest was hugely distressing for her. At the time, her response to undeserved personal criticism was a lot like mine is and she seems a lot like me in many ways-sensitive and unable to understand why other people can be so horrible at times.

Reading accounts of her childhood online makes me appreciate the fact that my own Aspergers was diagnosed during childhood. Although this didn’t protect me from mocking, at least I knew the reason behind some of my eccentric behaviours. Susan has only been able to see her eccentricity as being due to her Aspergers in the past year, having lived for over 50 years with the hostile and negative attitudes of others and being described as having brain damage caused by a lack of oxygen at birth. It is apparent to me that Susan is highly intelligent but, due to problems expressing herself verbally, is often seen as the opposite. This is a subject close to my heart as I know that, if someone was to see me when I am stressed or anxious and struggling to communicate via speech, they would probably assume that I had learning difficulties. I have even had people be asked in my presence whether I can speak at times like these. Yet my intelligence is unaffected by my Aspergers-it’s just that, for so many people, verbal ability is equated with intelligence and, if someone lacks the ability to communicate verbally in a coherent fashion, whether temporarily or on a more permanent basis, it is automatically assumed by a lot of people that they don’t have anything worthwhile to say. There are lots of videos on YouTube of people diagnosed with severe autism using Type to Speech software-people who were assumed to be unable to communicate because they struggle or even find it impossible to communicate verbally. Many people on the autistic spectrum prefer typing or writing over verbal communication because it allows a higher degree of control and it allows errors to be corrected before the message is sent. 

What I have found to be of significant personal interest is the response that people online have had to Susan Boyle revealing that she has Aspergers. The vast majority of people have said that it is no surprise to them as they always thought that to be the case-this is encouraging as it shows just how many people are aware of the symptoms of Aspergers these days compared to ten or even five years ago. Some people hold the cynical view that the story of her being diagnosed with Aspergers was released to coincide with the release of her seasonal duet with Elvis Presley. I personally don’t think this has anything to do with it but everyone is entitled to their own opinion. Then there are the usual minority of people who have nothing better to do with their time than sit on the Internet and think up disparaging and cruel remarks about the fact that she has Aspergers with comments such as, “Crazy person diagnosed as crazy? Breaking news!” which, to me, aren’t even worth dignifying with a response as they are wrong on so many levels and the people writing them know this but don’t care. One man commented that Susan Boyle’s Aspergers must be severe because most people with Aspergers don’t have learning difficulties, struggling to understand that the main point he was missing is that Susan Boyle was only diagnosed with learning difficulties because medical professionals at the time she was growing up had no knowledge of Aspergers. I doubt that the way she was educated was particularly friendly to the way her mind works and the way she learns, not through any fault of her teachers but just because her Aspergers wasn’t recognised for what it was-a different way of thinking and perceiving the world. It is all too easy to assume that the problem is that someone is unable to learn rather than the issue being that they learn in a way that is deemed to be non standard.

Overall I am impressed with how positive the majority of responses have been to her story. My only regret is that she was not diagnosed sooner than this as she has admitted that diagnosis made such a difference to her life. Susan Boyle is a highly talented individual and I hope that her story helps even more people understand the basics of Aspergers-if just one more person reads her story and goes away with more basic knowledge of Aspergers and how it affects people, then it’s worth it, no matter what some cynics may say.

Animals and the autistic spectrum

A close friend and former work colleague of mine requested that I write this post and it is a topic that I find fascinating so I thought I’d try and explain why people with autism go one of either two ways with animals, in my experience-they either fear them or absolutely adore them and consider them as lifelong, loyal friends.

I myself am a cat person. I have been brought up around cats from the age of 8 and I went through a phase where I was obsessed with anything feline related. Cats are affectionate enough for me to feel loved and valued by them but they are not clingy. I don’t deal well with clingy animals-I like animals who come to you when they want or choose to but can be indifferent to you the rest of the time. There is the long running joke that cats are very much like people with Aspergers Syndrome and I definitely saw this in my female cat who unfortunately passed away late last month at the age of seventeen and a half. She came across as aloof and indifferent to all humans until the very end of her life with us (I do know that these are highly stereotypical autistic traits but I am using these as an example). She could not tolerate a lot of sensory experiences and would lash out at anyone who tried to inflict these upon her by clipping her claws or giving her a worming tablet, for example. Cats are a lot easier for me to cope with than dogs. I am grateful for all of my feline companions over the years. I kept fish as well but that didn’t work out as I kept accidentally over feeding them and they all died within a short time of me getting them.

When it comes to dogs, I fear them. I find them highly unpredictable and I can never be sure of how they will react to me. I feel intimidated when they sniff at me or try to jump up at me. Logically I know that they are just trying to be affectionate and that this is their way of greeting me but I can’t seem to move past the fear. It doesn’t help that barking is one sound I really dislike. I remember, last summer, I was walking around our local lagoon when I came across a dog who was off his lead. He ran up at me, barking, and I bolted past him, trying to find any escape route. His owners thought this was hilarious and one of them even made the joke, “You’re not scared of babies too, are you?” as he was pushing a pram. I have found that a lot of dog owners I have experienced can’t understand why people are scared of dogs. Telling me that your dog is friendly doesn’t work either-it’s not that I fear that he or she is angry-it’s just the unpredictability of their behaviour that scares me. I don’t deal well with energetic animals and dogs are naturally a lot more energetic than cats who, after all, sleep on average 20 hours a day!

I do, however, realise that, for a lot of people on the autistic spectrum, dogs are fantastic friends. There are even Autism Service dogs in both the United States and the United Kingdom who are specifically trained to calm children with autism who are anxious or distressed (http://www.dogsforthedisabled.org/what-we-do/how-to-apply-for-an-assistance-dog/autism-services-for-children/autism-assistant-dog-service/) Dogs are naturally more friendly than cats and, for a lot of people with autism, this works better. A dog will always be there for support when someone is having a bad day whereas a cat may just wander off, more interested in where its next meal is coming from than their owner’s distress!

I know that there are more types of animal than just cats and dogs but these are the two animals that I have chosen to discuss in this post. Other animals can display the same characteristics that make them easier for someone with autism to get along with.

Animals do not judge and they love unconditionally. For a child who is often ostracised or bullied at school for not fitting in, animals can be saviours. Animals don’t care what you look like, how you speak or how you behave-they like you for being you. You will never fall short of an animal’s expectations because, as long as they are well cared for, they will love you loyally until the end of their lives. There are a lot of people with autism who respond to animals better than they do to humans. Indeed, I would class myself as one of them. It is far less hassle to communicate with an animal-they don’t take offence if your interpretation of their non verbal communication is wrong. You don’t have to constantly be analysing the conversation and thinking of what to say next because you can sit in silence with them for hours at a time if you desire and they won’t judge you for it. I genuinely believe that human beings could do with learning from animals at times.

I leave you with one thought-what would the world be like if it consisted of solely animals? I, for one, think it would be a far better place.