I Wonder

I wonder what it would be like to be able to instinctively read people’s body language and facial expressions.

I wonder what it would be like to not be the last person in the room to get the joke.

I wonder what it would be like to be spontaneous.

I wonder what it would be like to not be constantly over thinking, every second that I am awake.

I wonder what life would be like if I didn’t have the talents I have.

I wonder what my life would have been like without the positive aspects of Aspergers.

I wonder why people are so fixated on the negatives in life when there are so many positives.

Most of all, I wonder constantly what this coveted “normal” actually is, given that everyone has their own issues to deal with.

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My thoughts on the recent “poison pen” letter in Canada

Earlier this week, it emerged that a woman who looks after her thirteen year old autistic grandson three to four times a week while his parents are at work was sent the typed equivalent of a “poison pen” letter. The language in the letter was disgusting and the attitude even more so. (Link to article below). This article includes excerpts of the letter but does not include it in its entirety but it is going around Facebook and I’m sure most people have seen it by now.

http://edition.cnn.com/2013/08/21/world/americas/canada-autistic-letter

In the online autistic community, in particular, there were calls to make this a hate crime-the writer of the letter uses the insulting terms “retard” and “idiot” to describe Max and suggests that he should be euthanised and his “non retarded body parts” should be donated to science. In between these two statements is a bigoted diatribe about how he is worthless to society as he will never get a job or marry, as if these two things are a prerequisite to having something to offer to society when, in fact, his humanity does this. There are plenty of people without autism who remain single throughout adulthood and there are also plenty of people, autistic and not, who are unemployed. Someones employment or relationship status does not affect what they have to offer to society.

The police in Canada have said that this doesn’t fall under the category of hate crime. To me, this makes no sense. The letter writer made it plain that the reason she was sending the letter was because of Max’s condition. She wrote that other noises are “normal” in a residential neighbourhood and that he isn’t. Children without autism can be very noisy too-is their noise tolerated more because they can form words? The writer is completely ignorant and doesn’t want to open her mind to why Max is making these vocalisations. He may be a nature lover and is expressing his happiness at everything he sees around him. He may be hungry or frustrated at something. This is his form of communication and that should be recognised and not treated simply as “noise pollution”.

I guess, to me, what this letter symbolises is that a small, but large enough to be frightening, minority of people have no respect for the lives of autistic people. This woman, in particular, appears to have a belief that Max should not be entitled to have fun outdoors like other children. She complains that he scares her “normal” children. Whereas most parents would probably take that opportunity to sit their children down and explain that Max has a disability and that it is nothing to be scared of, this mother takes it upon herself to instead blame Max’s grandmother for letting him out of the house. He is a thirteen year old boy in the middle of the summer holidays-surely playing out in the garden is the most natural thing to do at his age. Keeping him in because the neighbours are so cruel about the vocalisations he makes only serves to entrench the discrimination he faces as well as being unfair on him. It’s people like the writer of this letter that make life so hard for autistic people and their families. A little compassion and basic human decency goes a long way in improving these people’s lives.

Autism is nothing to be scared of and the attitude that it is something to fear is, in part, what leads to the deaths of some of these children (see the Autism Memorial page linked to on the right hand side of this blog). Certain people seem to view those with autism as somehow less than human. People with autism deserve the same chances and treatment as everybody else in life-their autism does NOT make them inferior to other people. If everybody had this positive attitude about autism, the disabling effect of it would not be as severe. It’s people’s attitudes that affect the lives of autistic people and their families the most-it’s the sneer of people in the supermarket when a child with autism experiences a meltdown due to the sheer overwhelming of all the senses (what is known as sensory overload) to which someone inevitably says, “That child’s spoiled! You just need to discipline them!” I have known people with autism who were educated in mainstream schools who were told by teachers that they needed to “fit in” with their peers more to avoid being bullied, effectively telling them that it was their fault because they were too “different”. People need to open their minds about autism. Considering that people without autism are supposed to be better than us at the whole empathy thing, the attitude of some people towards those with autism is shocking and appalling!

I leave you with a poignant quote from one of the autism groups on Facebook (I can’t take any credit for it), “In the age of information, ignorance is a choice”.

Debunking the main myths surrounding Aspergers

There are a lot of myths surrounding Aspergers which make life a lot harder for those of us living with it on a day to day basis. In this post, my aim is to explore these myths and then explain what the truth actually is.

Myth Number 1-people with Aspergers are prone to acts of violence. This opinion has become more prevalent since the atrocity that took place at Sandy Hook Elementary School last December. Adam Lanza, who committed this awful crime, was reported widely by the media to have a diagnosis of Aspergers. Since then, there has been a lot of mistrust and fear of people with Aspergers, particularly in the United States. 

However, the majority of people with Aspergers that I know condemn Lanza’s actions just like everybody else. What he did was wrong and evil-no matter how much someone is suffering in their personal life, there is never an excuse for a crime like this. People with Aspergers are not inherently violent-indeed, in a recent discussion held on the Facebook group “Adults With Aspergers Syndrome” about this very topic, the majority of people in the discussion had never been violent to another person in their whole life. There are different personality types associated with Aspergers, just as personality differs in people who aren’t on the spectrum (but that’s another myth I’ll come on to later) and a significant number of people with Aspergers, including myself, are passive and dislike, even fear, confrontation. We would do absolutely anything to avoid inflicting pain on another person yet we are viewed by others as “dangerous” and “unstable”. Indeed a large majority of people with Aspergers have experienced or are still experiencing extreme levels of bullying, leading, in some cases, to suicide (as the Autism Memorial site I link to on my blogroll shows), and also Post Traumatic Stress Disorder. Most of the time, these victims don’t fight back. Luckily I have not suffered in my personal life due to this highly damaging misconception that we are all violent and unstable but just reading through the relevant discussion on the Facebook page I’ve just mentioned shows that some people with Aspergers living in the United States have experienced active discrimination since last December (I’m not going to mention the specifics on here as I haven’t checked that it’s OK but it’s on the Facebook page) because people fear us. You don’t need to be scared of us-we are people just like you who happen to have issues with social interaction, non verbal communication, sensory processing and obsessions-that’s all.

Myth Number 2-people with Aspergers lack empathy.

There are actually different components to empathy. There is cognitive empathy (the ability to perceive what another person is thinking) and affective empathy (sensing how another person is feeling emotionally). Many people with Aspergers, including myself, at times, struggle with cognitive empathy and score lower than people without Aspergers in this area when undergoing psychological tests. However, we tend to score the same or higher in tests which involve affective empathy. Most of us do recognise emotions both in ourselves and in other people-this spans across the whole autism spectrum-even some people diagnosed with severe autism recognise tears and respond by showing kindness. Indeed, a common thought in the autism community online is that, far from not feeling emotions, we actually feel them more strongly than other people and therefore are so overwhelmed by other people’s emotional states that it comes across as not caring because we don’t know how to express what we are feeling. A lot of people with Aspergers are actually very sympathetic and compassionate people-we may not always show it in the “normal” way but that does not mean that we do not share other people’s pain or indeed happiness. A common way of responding to distress, for example, is to hug the person who is in distress. I personally struggle with this because I don’t really “do” hugs and, when I do, they are awkward which usually makes the other person feel worse so I try to help verbally instead. However, just because I don’t give people hugs when they are upset, it doesn’t mean that I don’t care or can’t see that they are upset.

Myth Number 3-all people with Aspergers are Maths/Computing geniuses.

Whilst this myth is not as damaging as the other two mentioned so far, it’s still infuriating especially for someone, like myself, who struggled with both of these at school. It took me 3 attempts to pass my Maths GCSE (taken at the age of 16 in England) to a level that would allow me access to university. Whilst there are a proportion of people with Aspergers who excel at Maths and an equal proportion who are computer whizzes and settle in jobs in this industry, there is an equally large, if not larger, proportion of us who aren’t good at either of those things. It should be remembered that, for a lot of people with AS, Aspergers isn’t the only condition we have-I have dyspraxia, for example, which often involves poor Maths skills. Others have dyslexia or dyscalculia which can also affect someone’s ability in Maths. I have lost count of the number of people who, when told that I have Aspergers, instantly say “Oh, are you amazing at Maths then?” although, as the years have gone past, people are beginning to realise that there really is no such thing as a typical person with Aspergers as we are all so different. My particular talent is language and, at school, I excelled in English. Aspergers comes in many different forms and being talented at Maths is only one of them!

Myth Number 4-all people with Aspergers are the same.

This is frankly amusing! It’s the equivalent of me saying “all people who don’t have Aspergers are the same”. Yes we do have specific traits that form the diagnostic criteria (although it now just comes under ASD Level 1 in the new DSM but that’s a post for another day) but, other than that, any 2 people with Aspergers are as different to each other as any 2 people without Aspergers. There are extroverts and introverts in our community. There are people with Aspergers that never stop talking and people with Aspergers who can stay silent for long periods of time. Even the core social difficulties affect people in different ways depending on other aspects of their personalities. For an extrovert, for example, they can mean getting misconstrued as “rude” because they have been dominating a conversation whereas introverts can be misconstrued as “boring”. Misconceptions are very common and do a lot of damage to our self esteem so please try and understand that we are all different and that we have our own personalities.

Myth Number 5-people with Aspergers are rude.

The rudeness thing is not deliberate-we simply see things in a different way. Everyone with Aspergers that I have come across, both on and off line, has a tendency to be very honest and, when people don’t always want to hear the truth, it can be misconstrued as intentionally rude and hurtful. People with Aspergers don’t usually see the point in actively lying-I certainly take things at face value and so communicate in the same way. Most of us are not intentionally rude and get upset when we discover that we are thought of as such. Over the years, my social skills have improved to the extent that I haven’t been described as “rude” (well, not in earshot anyway!) for several years but I know how confusing it is to be described as such when, to me, rudeness implies intent and there was never any intent to make people feel bad with some of the things I used to come out with.

Myth Number 6-people with Aspergers don’t make good friends.

I have a lot of friends with Aspergers and we get on fantastically. People with Aspergers, as long as they haven’t been mistreated for so many years that they become cynical and lack trust in others which unfortunately happens too often, are very loyal friends. I know that I would do anything for my friends (as long as it’s not making a phone call for them!) as I appreciate them having made the effort to get to know me and all my eccentric little ways. I like to think of myself as a fairly decent friend and I would describe my friends with Aspergers as decent friends. If anything, living in a world that often shuns people with social difficulties makes us appreciate highly the people who make a difference and don’t judge us harshly for the little mistakes that we make but explain them in a way that makes sense to us so that we can avoid making the same mistake next time.

These are the main myths that come to mind. Of course there are many others that people extrapolate from knowing one person with Aspergers and assuming that this person’s characteristics apply to everyone with the condition but I have to get on with my day so I am focusing on the most common and damaging ones. I leave you all with one reminder-if you’ve met one person with Aspergers, you’ve met one person with Aspergers.

 

The “cure” debate

As mentioned in my post yesterday, this is a subject which I have strong feelings about. Over the years, I have been asked on many occasions, “If there was a tablet that cured Aspergers, would you take it?” My answer to this is always “No”, even when I am feeling frustrated or upset due to misunderstandings caused by it.

I hold this opinion for several reasons. Firstly, the word “cure” implies that Aspergers is a horrible thing to live with and that there can’t be any positive aspects to it. For me, personally, I simply consider Aspergers to be part of my make up and part of my personality. It is as much a part of me as my liking for pasta, my love of cats and my fondness for Doritos and Pringles. Yes it has its challenges but it is too much a part of my life for me to want to get rid of it.

Secondly, as mentioned in my post yesterday, along with its challenges, it also brings positives. If I was to get rid of it, (hypothetically of course as there is no cure for something that is hardwired into your neurological makeup), I genuinely believe that I would lose some of these positives, particularly being able to focus so single mindedly on one particular topic and learning everything I can about it. I have met people with Aspergers and autism who are incredibly talented in different areas-Art, Maths and Computing to name a few. Although this sort of talent is not seen in everyone with Aspergers/autism, we are all unique individuals with positive aspects to our personalities and I believe not despite but because of Aspergers/autism.

Thirdly I think a “cure” takes the onus off people without Aspergers or autism to try and understand us. A lot of people who don’t have these conditions do try their hardest to understand us and this is something that I, certainly, am grateful for as I know how socially awkward I can come across as so it makes me appreciate the effort that people take to get to know how I “tick”. Some, however, would prefer us to “blend in” to society more than we are capable of (and, believe me, we do try very, very hard) because difference scares some people. Difference has been and will always be part of life in a variety of ways and I believe that getting rid of Aspergers and autism would be disastrous for society as a whole as we can teach people a lot about tolerance, diversity and about how to appreciate the simple things in life. We process information differently and so have our own unique viewpoints on life but, just because this may be different from the way that those without these conditions see the world, it doesn’t make our viewpoint inferior to yours. I believe that difference should be embraced and that we should all learn from each other. I have learned so much from working where I do as well-some of the people I have learned the most from in life are people with severe autism who don’t communicate verbally. They are unique and extremely interesting. Life is never boring where autism is concerned!

Another point I am keen to express is that wanting to “cure” somebody’s autism spectrum condition is basically wanting to “cure” them of being themselves. A lot of people with Aspergers and autism hear people talking of wanting to cure autism and see that as a personal attack on who we are as people. This obviously does nothing to help self esteem, which is usually already fragile. I sometimes get the impression that people without these conditions see them as an “add on” to who we are as people. We tend to see it as a large part of who we are that has been with us since birth and that we have learned to appreciate and live with. A “cure” is for something like cancer, something which destroys lives and can be targeted to eradicate. Aspergers and autism is not like that-it’s simply who we are.

I don’t want anyone to get the impression from this post that I talk for everyone on the autistic spectrum. I have come across people with Aspergers online who say that they want a cure because they are fed up with being bullied and feeling isolated. A lot of people with Aspergers, particularly those who are in their 50s and 60s, had horrendous childhoods due to nobody understanding them (Aspergers wasn’t a diagnosis back then) and so I can understand why they are sometimes less positive about their condition than I am about mine. However, in this case, I think a “cure” would be putting the onus on the victim of these horrendous acts to change rather than trying to educate people about the reason why someone with Aspergers or autism behaves the way they do. Besides, as most people know, bullies will always find something to target a person about. We are simply often the easiest target because we have problems with social skills. If it wasn’t Aspergers, it would be weight or height or hair colour or academic capability (whether high or not so high) or any reason that the bully can think of. It is not the victim who needs to change-it is those that think they have the right to crush people’s self esteem by subjecting them to cruelty and humiliation.

Whilst I am totally against the idea of a “cure”, I support people developing coping strategies and attending support groups to learn to live with their Aspergers in the best way possible. I myself attended Social Skills sessions run by my secondary school and funded by my Statement of Special Educational Needs. These helped me in terms of turn taking, controlling my anger and frustration when being wound up by classmates and reading certain facial expressions. I also attended a support group for people on the autistic spectrum at university where I made some very close friends. This is completely different from a “cure” as it’s helping to manage the symptoms of Aspergers/autism that are causing the most distress in order for someone to be happier within themselves but it’s not treating Aspergers/autism as something that needs to be eradicated from our lives completely.

In summary, I don’t believe a “cure”, were one to be hypothetically found, would be a good thing. Aspergers is often co morbid with depression and anxiety but that is usually because of the pressures of daily life in a world which is not designed for us. I believe that the only way we can make the world more Asperger/autism friendly is to keep on trying to educate people about what living with this is really like. A “cure” simply takes away the interest that people have to learn how we “tick”. Diversity should be celebrated. Aspergers and autism are nothing to be ashamed of. They are simply different ways of viewing the world around us.

The positives of my Aspergers

I have written so far on this blog about aspects of life that I struggle with so I thought it was time to balance it out a little and express what, in my opinion, are some of the positives of my Aspergers.

Firstly, I have an exceptional long term memory, particularly relating to conversations and auditory input. I can remember conversations as far back as my childhood with perfect clarity and can recite them verbatim if asked. While this can be a negative in some ways (I remember negative conversations/comments as well as positive ones and also it can get very frustrating when I can remember something clearly and the other person involved in that conversation denies that it ever happened or that they said a certain thing), I also like the fact that I can rely on my brain to remember the oddest of things and it’s a definite advantage in pub quizzes! It was also an advantage during my school years and I feel sure that, if it wasn’t for my long term memory skills, I wouldn’t have done as well as I did in my public exams!

Secondly, it has made me determined. If I want something, I apply myself over and over again until I get it. Unlike the stereotype of someone with Aspergers, I am not very strong at Maths and I only just passed my initial Maths GCSE taken at the age of 16 with a low E grade. I really wanted to go to university and I knew that the universal rule was that applicants to university needed at least a C grade in both Maths and English GCSEs so I retook my Maths GCSE twice in order to get that C. When I did finally get it, I was ecstatic! I have always persevered in situations too, even ones that I find challenging. Indeed I won a special prize for perseverance at my Year 11 Leavers Ceremony. I can be stubborn but it gets me to where I want to be so I am appreciative of the fact that I don’t give up easily.

Thirdly, as mentioned in my Welcome post, I have a flair for language. I believe that this is, in part, due to dyspraxia rather than Aspergers but my obsession with reading is a trait of Aspergers, in my opinion. I learned to read very early on in life-there is video footage of me reading the Sunday Times newspaper on holiday in Devon when I was 4. Not only was I reading but understanding fully what I had read too. It was nice to have that one area that I was talented at when going through school-I have always been good at reading and spelling. I can read a 400 page book in 2 hours. When I read, my mind goes into hyper focus mode and I can block everything else out and completely immerse myself in the book until it’s finished. I have over 200 books on my Kindle and the bookcase in my room is full of books too and that’s after giving a lot of them away to charity shops as there just wasn’t enough space for all of them. My flair for language meant that I gained very respectable grades in my English Language and Literature GCSEs and I went on to do English Literature A Level too. I enjoy writing (which is probably why this blog has 5 posts already!) and I feel that, as I can express myself so much more easily in writing, it is a good idea for me to have this blog so I can explain myself in a far more articulate fashion than I could if I was explaining it to someone face to face.

Lastly, I enjoy the fact that I am prone to obsessions and that I have a thirst for knowledge. I love to learn new things and like to keep myself updated with the main events that are going on in the world. I have also been able to use my obsessions as a helping hand in life. I am obsessed with medical conditions and special needs so I have used this to help me in my job at a special needs school. I believe that having Aspergers, at times, gives me a unique insight into how some of these students “tick” and why they are behaving in certain ways, which I can then share with my colleagues. I knew from the age of 13 that I wanted to work with children with special needs because I am so interested and fascinated in this area. I love going into work each day and I am blessed because I know that not a lot of people can honestly say that about their job.

So there you have it-what I see as the positives of my Aspergers. Living with Aspergers can be tiring, frustrating and emotionally draining but it is positives like the ones above that make me appreciate my Aspergers and make me against the idea of a cure (that is a topic for another day so I won’t get further into it because I could rant about it for ages!) I hope that I have been able to express that there are many positives to this diagnosis too and, although they may differ from person to person, we all have positive aspects of our personalities which can be attributed to Aspergers,

“I Don’t Mind”

The above phrase is one of my most used ones. Like a lot of people on the autistic spectrum, I am very indecisive and struggle to make choices or decisions, whether big or small. I know that this is not solely the preserve of those on the autistic spectrum but it is a definite trait from what I have noticed and I believe that this is the reason why we generally thrive on routine and structure. If you are not given too many choices, then the confusion element doesn’t exist and it is very confusing. 

I can remember sitting for a whole morning when on study leave for my A Levels (for those who are non UK based, these are exams taken at the age of 18 in the UK), trying to decide which topics to revise for my Sociology exam. This was not an act of procrastination-I desperately wanted to get on with my revision but I genuinely couldn’t decide which topics to revise. Eventually I chose my topics and revised them well, gaining a respectable B grade in my final A Level.

I struggle with smaller choices as well. When I meet up with a friend for lunch, for example, and they ask me where I want to eat, my stock answer is “I Don’t Mind”. When I am with a friend who’s equally as indecisive as me, we can get stuck at choosing where to eat for a good half hour or so! Usually I let other people decide and I’ll go along with what they want to do although, obviously, this doesn’t work with bigger decisions. Too much choice is overwhelming as I know that there is no real preference I have for one particular type of restaurant over any other as I will eat pretty much anywhere!

Talking of restaurants, I have a long standing tactic for avoiding having to make choices when it comes to the menu. I have standard meals that I will eat in restaurants-spaghetti bolognaise or Carbonara in an Italian restaurant, chicken tikka masala and pilau rice in a curry house, sweet and sour chicken balls and prawns on sesame seed toast in a Chinese restaurant and usually a beef or cheese burger in a pub. This often earns me some light hearted teasing for being boring and predictable but the number of choices on the average menu is staggering! 

Choice is confusing and I suspect that a lot of people with Aspergers are “I Don’t Mind” people. Obviously everyone with Aspergers is an individual but generally we don’t really cope with lots of choices or having to make a choice or decision under pressure. 

That’s me done for today. Tomorrow I am aiming to make a post about the positive aspects of my Aspergers as there are some aspects of it that I genuinely appreciate.

Non verbal communication

Non verbal communication-one of the areas of life that most people who are not on the spectrum take for granted. Most people without Aspergers/autism are blessed with the gift of being able to take in other people’s body language although I know that how well they can do this varies from person to person although, from what I have seen, even the ones who can’t do it that well can still do it better than someone on the spectrum although that’s just my personal opinion.

To me, body language and facial expressions are confusing and often overwhelming particularly in group situations. I have improved in this over the years-I have a wonderful app on my IPhone which lists the most common postures in body language and what the meaning behind them is. Unfortunately it’s not always feasible for me to whip out my IPhone and consult it in front of people particularly as people’s body language often changes from minute to minute so, by the time you have understood what one posture means, they are on to another one. I am always mystified as to how those who aren’t on the spectrum can take this in so easily and seemingly without much thought.

When I am talking one on one with somebody, particularly somebody who I am close to and trust, I find body language a lot less intimidating although no less confusing to understand. There is the well known statistic that 93% of all communication is non verbal with only 7% being through words. To me, and to a lot of other people with Aspergers that I know, the figures can be alternated. I rely almost solely on words as I find them a lot easier to understand than the nuances of non verbal communication. Trying to work out what someone’s body language is telling me is tiring and that’s without adding in facial expression which adds a whole other layer of complication. People’s facial expressions are confusing to me-there seems to be so much activity going on in the facial muscles that, often, these distract away from the topic being discussed. 

Then we come on to eye contact. Over the years, I have become pretty good at giving half decent eye contact as I know that a lot of people find it uncomfortable talking to someone who gives them none. When I am stressed or overly emotional in any way, though, this disappears. I think there is a fundamental difference between how people who aren’t on the spectrum view eye contact compared to how people on the spectrum tend to view it. To me, I understand that other people want me to give it in conversations because they are getting something from it in terms of non verbal communication but, personally, I don’t think it adds anything to the conversation and I get very little from it, presumably because I can’t read the messages within the eyes. It seems to be an unwritten code that I am struggling to decipher. I find, when I need to talk about something serious, the best way for me to express it is by closing my eyes so I have no visual stimuli at all to distract me from what I need to discuss.

Finally, my body often gives contradictory messages to my mood. I have been told before that I seem disinterested in a topic of conversation even when this is not the case. It seems that not only do I miss other people’s subtle nuances of non verbal communication but also that the messages my own non verbal communication is giving out are often misinterpreted too-this is why everything would be much easier if everyone relied solely on words. When I am excited about something, I swing my arms, jump up and down and clap but, other than this, I don’t really have any animated body language. This may make me an enigma to some but it’s just how I am.

I hope some of this made sense. I have one final thing to say-if you know someone with Aspergers and interact with them on a regular basis, please remember that they are trying to communicate the best they can. We may not have brilliant social skills but we do have a lot to offer when we do get going in a conversation.