Update on my life

Hello all. I know it’s been a few months since I updated this blog (you will see the reason for this later on in this post) but I am pleasantly surprised that people are still coming to this page every day despite months of neglect on my part.

My life has changed a lot since I last posted. My beautiful son was born on the 10th of May. I never understood how sudden and instant a love you get for your children until the moment I heard him cry. I spend most of my waking hours simply taking him in and looking in wonder at the lovely baby I spent 9 months carrying. With his arrival comes a whole host of new experiences and anxieties. There are the immediate concerns: Is he feeling unwell? What is he trying to tell me? Is this nasal congestion normal or a sign of an impending chest infection? Am I making enough milk for him? Then there’s the long term concerns: Will he have a happy childhood? Will he feel able to talk to me and trust me when he’s older? Will he know how much I love him? Motherhood is daunting but it’s also so rewarding and I genuinely can’t imagine life without him now.

In terms of motherhood with Aspergers, I feel that I have already surpassed expectations in this area. I am coping a lot better than I thought I would when I was still pregnant. I am learning from my son every day and I feel we have a good bond. I feel that he now trusts me to take care of his needs and that he can sense how much love I have for him. I have signed up to cooking lessons which will help me learn how to cook nutritious meals ready for weaning and also to a baby massage class which should be very relaxing for both of us.

I am lucky in being so well supported in this journey. My wonderful husband and mother have been absolutely amazing since I gave birth and I wouldn’t be anywhere near as confident as I am if I was learning it all on my own. For all of my readers out there, whether parents or not, please accept any support offered to you. It really does make so much difference.

I aim to update this blog as much as possible when my motherly duties allow. Thank you so much for all your continued support. I wish you all the very best in life and I will continue to check in here as much as I can.

Happy Easter to all!

Firstly, I must apologise for my neglect of this blog over the past few months. My husband and I have both been very busy moving into a flat suitable for our growing family and sorting out the nursery and baby’s furniture. My pregnancy has also recently run into a couple of potential complications, one of which I have been cleared for and one of which I am still undergoing testing and monitoring for. With only a month or so left to go, it’s really beginning to feel real now! Soon we will be a family of 3 and I will have a son or daughter who is completely dependent on me. I can’t wait but it’s nerve wracking too.

I would like to wish all of my readers a Happy Easter if they celebrate it. I hope the Easter celebrations have been all you hoped for. I’ve had a quiet Easter this year but really enjoyed the Easter Sunday church service we attended yesterday.

Of course April also marks Autism Awareness Month. I have seen a lot of activity on the online groups I belong to and I have enjoyed reading all the blog posts about life on the spectrum that people have been writing to raise Autism Awareness and to promote Autism Acceptance. As mentioned before, life preparing for our new arrival has meant that my own blogging has been limited but, as always, I hope that my blog has been helpful to my readers and I have noticed a couple of new readers comment on my older posts since the beginning of April, pointing out that what I describe sounds exactly like them. It always makes me happy when I receive comments like this as it reaffirms the fact that there are people out there who rely on my blog to help them make sense of the world and help them realise that they are not alone in the way they interpret the world, something that despite all the facts, figures and statistics, most people on the spectrum feel on a regular basis. As long as this blog is available to the public, I feel that I am doing my bit for Autism Awareness/Autism Acceptance and, as I move on to the new life chapter of parenthood, I will have so many more experiences to write about and hopefully receive help from mothers already in my position and, given time, also be of help to other mothers on the spectrum.

I wish all of my readers the best. Look after yourselves and I will be back with another blog post soon, I promise!

30 things I have learned from 30 years living with Aspergers

Hello to all my readers. I apologise for not blogging as regularly recently-settling into life as a married woman means I am very busy a lot of the time. I also turned 30 this past Monday so have been busy celebrating that. To coincide with turning 30, I thought I would do a blog post detailing 30 things I have learned from 30 years living with Aspergers. As I always say, this list may not be applicable to every person with the diagnosis as we are all individuals-this is based purely on my personal experience. It’s intended to be a bit of fun so hope everyone takes it in the spirit that’s intended.

1. Living with Aspergers is an emotional roller coaster-so many highs and lows, but the best thing is just to accept your life for what it is. Trying to improve your life is never a bad thing but work with what you’ve got to do that, rather than just hoping one day the Aspergers won’t be there.

2. Your friends and relatives can set their watch by your little routines.

3. Talking of watches, you are always early to every appointment and social engagement you have as you hate being late for anything and so take great lengths to ensure that doesn’t happen. (I know some people on the spectrum can struggle with time keeping due to executive functioning issues-I’m not one of them).

4. Social rules keep changing and, as an adult, it’s a lot harder to get away with making social mistakes than it was when you were a kid.

5. These days, a lot of people think they know what Aspergers entails (largely through media exposure) but have the wrong impression or idea when it comes to you personally. Try not to be offended-instead use the opportunity to raise awareness and educate them into what Aspergers is like for you.

6. You may as well save some time and not even take a menu in a restaurant as you know exactly what you are going to have there but you end up glancing through the menu every time anyway only to choose exactly the same meal you’ve chosen for the last 10 years every time you eat at this restaurant.

7. A lot of people, including a worrying number of professionals, seem to believe that, once you turn 18, your condition suddenly disappears and you go from being a child who needs a lot of support to being an adult who needs no support at all despite having a whole different set of issues to cope with. This is very frustrating and has ended up being very harmful towards some people on the spectrum, particularly with PIP being declined in a lot of cases. This is one aspect of ignorance that I find so hard to change because so many people still think of autism as a childhood condition.

8. Traits which often lead to bullying in your school years, such as being hard working and eager to please, are well respected in the workplace. (That said, the employment statistics for autistic adults are dire-I have come across an extremely high number of people on the spectrum who are perfectly capable of working but are not given the chance which really upsets me because we, as a community, deserve more. I have been lucky enough to find a career in an industry I thrive in but I know that a lot of other people on the spectrum are not as fortunate. Hopefully, in time, things will change).

9. You seem to have a special affinity with animals.

10. You have odd little habits that most people don’t understand but that you rely on to feel secure. One of mine is watching TV with the subtitles on. I don’t need to have them on as my hearing is fine but, for the past 20 years, I have needed them on to make me feel secure. It’s really hard to explain but I know that a lot of other people with Aspergers have similar sorts of comforts.

11. Clothing was never designed with us in mind. Labels feel like sandpaper against your skin and certain textures lead to frenzied itching (wool is the main one for me). Most people on the spectrum dress for comfort, not style, hence why most of us are never going to win any style awards!

12. Certain sensations that don’t seem to phase other people are such an issue for you that you do anything to avoid them. One chief example for me is static electricity. The thought of receiving a static shock is so distressing to me that I will roll my coat over my hand before I touch the handrail of an escalator or open a car door because these have given me static shocks in the past. I will also avoid unfolding any item of clothing that’s just come out of the dryer and has static properties. I recently received a static shock from an escalator in a busy London railway station and spent 10 minutes looking for a lift so I wouldn’t have to step on the escalator again (there wasn’t one so I ended up having to go back on the escalator after a couple of “false starts” because I was so worried about getting another static shock!)

13. Everyone wants you on their quiz team at the pub quiz because you’re great at knowing the small details that most other people overlook because they find them boring.

14. You get so fed up when people accuse you of not having empathy because you are actually highly sensitive and emotional.

15. You don’t understand how anybody could find clubbing a fun night out as it’s far too overwhelming for your senses. You’d rather a nice meal in a curry house any day!

16. You love a bit of repetition! Whether it’s a certain episode or scene from your favourite TV show or a certain song, you have no qualms with watching/listening to it 500 times in a row!

17. You realise who your true friends are when you’re in meltdown mode in front of them.

18. You are always accused of being too open but you don’t know any other way to be.

19. Your inner thermostat never matches with the weather. It can be the middle of summer and you feel the need to wear a coat or it could be the middle of winter and you get your shorts and T shirt out!

20. Your family, friends, teachers and work colleagues recognise your handwriting anywhere because it’s so unique, to put it politely!

21. You’ve always seen clapping or jumping as a legitimate expression of excitement or happiness and don’t understand why so many people can’t understand this!

22. Textures of food items are more of an issue than how they taste when it comes to whether you can eat them without gagging.

23. You don’t understand why people see obsessions as a bad thing when they have brought you so much happiness over the years.

24. It’s hard to try new things but, once you do, you continually amaze yourself with how you can adapt to your new circumstances and how strong you are.

25. A lot of people have low expectations for you and you are continually proving people wrong.

26. You are so disorganised and continually misplace or lose your personal possessions but seem to be able to find other people’s lost possessions with ease.

27. You wonder constantly how you managed to get to adulthood with such non existent observation skills.

28. You know that the friends who stick by you are special and you would do anything for them. We’re not the easiest people to be friends with a lot of the time so those who remain friends with us are life’s decent people.

29. A lot of people won’t ever understand you or have the will to try-those who do understand us are the ones we need to keep in our lives. It makes life so much easier than constantly trying to explain yourself to someone who will never understand you.

30. Finally, despite all the negatives, you wouldn’t change who you are for the world because you have a great life.

My thoughts on World Autism Awareness Day

Today marks World Autism Awareness Day. Over the past couple of days, I have noticed a lot of my Facebook friends have changed their profile pictures to represent this. Here are my thoughts on the whole concept of Autism Awareness Day.

Personally I feel awareness of autism is actually pretty high. What is lacking, in my humble opinion, is understanding. Most people I have come across have heard about autism, seen documentaries on it or known someone on the autistic spectrum. What a lot of people struggle to do is realise that every single individual who is on the autistic spectrum is exactly that-individual. My own experience of my autism is completely different to the experiences of the people I have worked with in residential care over the years. All of us suffer from stereotypes. People like myself are often dismissed and told that we cannot have autism because we are able to communicate verbally (even though to do so a lot of the time is extremely difficult and stress inducing) and have formed close relationships. People who have a learning disability alongside their autism are often assumed incompetent and this is what leads to a lot of challenging behaviour. How frustrated and angry would you be if people never thought to seek your opinion on something because they believed you had nothing to say because you communicate through other means, rather than verbally? Both ends of the spectrum and everything in between need a lot more understanding.

People also need to understand that autism is extremely complex. We may be able to do something one day and then, the next time we attempt to perform exactly the same task, it fails because our brains just can’t process it at that particular time. I have noticed that it is this particular trait of mine that has the tendency to annoy people the most. People don’t seem to get how I can be able to do something one day and not the next. I don’t blame them, to be honest, as I struggle to understand it myself a lot of the time. It took me 30 tries to be able to fill in a paying in slip for the bank-I was equally as frustrated as my mum at the end of it. Please don’t shout at us if we are not able to do something we have done before. Please understand that our processing system struggles sometimes, particularly if we are tired or anxious and, for me personally, knowing that someone is getting frustrated with me makes me anxious and thus even slower.

I also feel that, while World Autism Awareness Day is a good thing to have, what we should aspire to be as a society is one which is so understanding of people on the spectrum that we don’t need our own day to educate people because everybody already has an understanding. I believe we are closer to achieving this goal all the time. Blogs like mine have a part to play in this. I have always believed that you cannot moan about someone’s ignorance on any topic unless you have done your best to educate them on it. Yes sadly there will always be people who, despite education, remain ignorant but the majority of people are decent human beings and are receptive to education. I have been thanked so many times from people who have read my blog and said that it has taught them so much about Aspergers, although, as I always remind everyone, we are all individuals with our own traits, hopes, dreams and fears.

I wish everyone a Happy World Autism Awareness (Understanding) Day. I hope this blog post goes some way in helping to promote understanding.

Isolating Aspergers versus accepting Aspergers

In my years of living with Aspergers, I have come across a plethora of attitudes towards the condition, both from people on the spectrum and others who have varying levels of experience with the condition. One aspect of attitude towards Aspergers is whether or not you isolate it or accept it as part of you/the person with Aspergers you know. Isolating it is a term I use, rather than a generally recognised one. What I am referring to is treating Aspergers as a separate entity, something that can easily be distinguished from one’s personality and, as a consequence, usually something that is easy to blame when things go wrong.

I am the first to admit that, depending on my mood, I swing between isolating Aspergers and accepting Aspergers. During a highly emotionally charged meltdown, I once even posted on Facebook that, if my Aspergers was a person, I would punch it in the face. However, once I had calmed down the next morning, I could see that this strength of feeling had been impulsive and provoked by the meltdown I had been in the midst of. The simple fact is that Aspergers is a significant part of who I am-always has been and always will be. Yes I sometimes wonder what I would be like if I didn’t have the condition but, as I have gotten older, that has decreased a lot because I realise that it is a somewhat pointless exercise because, no matter how many hours I sit there wondering how different I would be if I didn’t have Aspergers, my neurological makeup and the way my brain is wired is not going to change. It influences the way I think and the way I perceive language every day which is why I consider it a significant part of my life and why, when I am emotionally stable, I accept it.

I often find that accepting it is the happiest option. When you can accept Aspergers as part of what makes you you, it becomes one less battle to fight. We have enough struggles in life without being constantly at war with our brains. I also think it’s important to remember that everybody faces their own issues and struggles in life, whether they are autistic or not. Try not to blame everything on Aspergers, which I have seen some desperately unhappy people do. I suppose that brings us to one main point in all of this-depression makes it so much harder to accept Aspergers as part of your life. I have often found that, when people list why they would want to be cured from their condition, the things they list are often associated with depression-an overwhelming sense of hopelessness and despair. Depression is something I would say, from experience, a lot of people on the spectrum struggle with. The world favours sociable people and most of us are not all that sociable. Plus we see the world differently and the way we view the world is not usually catered for. If it was, certain noises, sounds, smells and textures wouldn’t exist and it wouldn’t matter if people looked at you when they were talking to you or not. I have often found that, with other people on the spectrum I know, once the depression is under control, their outlook on Aspergers is much brighter. It’s the depression that needs to be treated.

Aspergers is not a monster or a demon. It is simply a different neurological makeup. It brings unique strengths as well as weaknesses. Yes, if I didn’t have it, I might be a bit more sociable and a bit less socially awkward but I might also have lost my ability to speed read, which I have always found to be a real strength. The truth of it is that I can’t tell what I would be like because Aspergers is so intertwined in my life that I can’t tell which aspects of my personality are down to Aspergers and which aspects I would always have had. What I guess I’m trying to say is does it really matter? I am not against self improvement but there is a difference between wanting to be the best you can be and the type of self hatred that I see all too often in the autistic community. I often find we bully ourselves more than anyone else has ever bullied us. Sometimes I find that evaluating the situation logically is the best way forward. Yes we have our issues but everyone does, whether autistic or not-their issues may be different but they still have their battles to deal with. Our lives would not suddenly be perfect if we woke up one day and our condition had vanished overnight. Everyone has little blips now and again but, if you feel like you hate your condition all the time, please seek help as it is most likely influenced by depressive thinking which DOES need treating. Remember the positives and remember your strengths-everybody is unique and the world needs all different types of minds.

2016 will be a good year!

I have a great feeling about 2016. Great things are ahead-my wedding to my gorgeous fiancé takes place in July and, hopefully, shortly after, another move to a permanent house this time.

As it will be a very busy year for me, I probably will not be able to blog as regularly as I have been but I will continue to blog whenever I can as I have learned so much through blogging and I appreciate all my readers for taking the time to read my blogs. I continue to hope that my tales of my experiences help other people who either have Aspergers themselves or have a relative or close friend with the condition or those who just simply wish to learn more about the autistic spectrum and the various conditions on it.

I hope that 2016 is a good year for each and every one of my readers. If you are feeling low, remember that better times are ahead. Last summer, I had hit a low period but look at me now-engaged and loving my new job and new flat! Positive things are always ahead, often when you least expect them!

I hope that, this coming year, understanding of autistic spectrum conditions continues to increase. A lot of people are aware of autism and its variants but there is still a lack of understanding as to the impact these conditions have on the people who live with them. Over the past couple of years, since I started blogging myself, I have noticed a significant number of people on the spectrum who are telling their own stories and offering advice to those who are new to the autism world. I really hope that this continues and that more people take it up as I firmly believe that, the more it is spoken about from a personal perspective, the more society will understand just what living on the autistic spectrum involves.

I wish everybody a happy and healthy 2016!

Aspergers and coming across as “ageless”.

A lot of people both with and without Aspergers have talked about the so called youthful appearance most people with Aspergers have. I have certainly noticed myself that some people I have met with Aspergers who are in their fifties or sixties look at least twenty years younger. I also find a lot of people who don’t know me personally tend to age me as in my early twenties when I am in fact nearer thirty. I believe that the reason why I may appear to look younger than I am is because, unlike most women, I don’t wear any makeup on a day to day basis so don’t look particularly adult. Makeup has never interested me although I do wear it on special occasions. I tend to rub my eyes a lot so any eye makeup ends up smeared around my eyes and I also have an overactive blink reflex so anything near my eyes makes me flinch and screw them up. Other people have theorised that the reason why people with AS tend to look younger is because they get less stressed over everyday things. I don’t agree with that though as I know a lot of people with Aspergers who look younger than they are but still struggle dreadfully with stress and anxiety on a daily basis.

People with Aspergers are frequently described in the medical literature as immature or lacking in age appropriate interests. I wouldn’t say we are immature-I prefer the term “ageless”. I am going to be thirty in just under a year and a half but I don’t feel it. I am not interested in makeup or fashion and I am interested in things that most people my age aren’t interested in. I am an avid watcher of human interest documentaries to an extent that could be considered by many as obsessive whereas most people I know aren’t interested in these. Emotionally I have always had outbursts that make me seem very childlike but, at the same time, I desire a marriage and children. I don’t feel as old as I am chronologically and sometimes I look at myself and feel that I am nowhere near as responsible as someone my age should be but then I remember that, in the workplace, I am hugely responsible on a day to day basis. I feel younger than I am but have certain views that make me feel as though I am living in the wrong era and should have been born in the 1950s. I feel like an enigma in ways. There are parts of me that function like a young child and other parts of me that function like someone 20 years older than me.

To this extent, I believe that most people with Aspergers are “ageless” rather than inherently younger than their chronological age. I see it as a sign of our eccentricity that we can function both years older and years younger than our actual age. Of course there are people without Aspergers who also function in such a way but I do definitely think it’s an Aspergers trait to display interests and behaviours that mean people think your age is vastly different to what it actually is.

As an end note, is it really important how old people think someone is? I have heard people take huge offence when someone thinks they are ten years older than they are because they see it as an insult that they look older. I personally don’t care how old people think I am-if people think you are older than you are, perhaps you should take it as a compliment about how wise you are and about how much life experience you have. Society needs to stop being so obsessed with age and start enjoying life as it is, wrinkles or not!

Lack of ability to understand inference

It sometimes astonishes me that I can totally miss the point of a conversation that the rest of the participants in that conversation understand perfectly. Like a lot of people with Aspergers, inference and hidden meanings trouble and confuse me a lot.I often find myself watching a TV programme and being completely surprised by the result of a storyline and then finding out that other people who have watched the same programme aren’t surprised at all!I seem to miss out on a whole layer of meaning that other people pick on effortlessly. It’s as if my brain just can’t process it!

This of course leads to issues in daily life. Many times I have been given instructions with inferred meanings and then been chastised for not following these instructions when I did exactly as I was verbally told but didn’t pick up on the subtleties of what was being communicated to me.Just as I can’t understand how people pick up these hidden meanings so effortlessly, other people can’t understand how I don’t pick up on them! I think that this is a large part of what makes communication so frustrating for both people on the spectrum and those around us too.

This lack of ability to understand inference and hidden meanings also means that I don’t pick up on social manipulation the way other people often do. It has to be explained to me for me to be able to see why someone is behaving in a particular way or coming out with a particular rhetoric. This often leads people to assume me as naive (which in itself is a great shame if not understanding social manipulation is seen as a disadvantage but that’s another issue!) These things just don’t enter into my head and I am often shocked at how much of someone’s motives I missed once it is all explained to me.

Oddly enough, I am more likely to pick up on inference when I am reading. I don’t know if this is because it is a solid, predictable format rather than being muddled by noises and faces or whether I can predict how a book is going to end because of how others in the same genre have ended but I can often pick up on someone’s intentions in a novel where I can’t in a TV programme or in real life.

I have a final plea to readers of my blog who are not on the autistic spectrum. Please keep it simple when communicating with someone who you know to be on the spectrum. Be clear and concise and request exactly what you want from us. Please don’t be offended if you don’t make instructions very clear and we end up doing tasks wrong. Try and think why we might have ended up doing the task wrong-maybe rephrase the instruction. It doesn’t matter how intelligent or educated someone with Aspergers is-they can still have specific problems with understanding inference and hidden meanings-please don’t make them feel bad about it. If you do phrase instructions clearly, you will find that the majority of people with Aspergers will do anything that’s asked of them (within reason of course!) You just need to give us that chance. I would be interested to hear the views of other people on the spectrum too as to any issues failing to get hidden meanings has caused them. I look forward to hearing from some of you.

What the tragic death of Elspeth McKendrick can teach us about Aspergers

Last week, while on holiday, I read a news article that instantly had an effect on me. The article reported the suicide of Elspeth McKendrick, a sixteen year old girl whose primary reason for committing suicide was her struggle to accept her diagnosis of Aspergers.

http://www.telegraph.co.uk/news/uknews/law-and-order/11521776/School-prefect-hanged-herself-after-failing-to-come-to-terms-with-mild-autism-diagnosis.html

The reason why this had such an effect on me is because the way Elspeth was described by her parents and teachers describes perfectly the way I came across at that age. The similarities are uncanny. I was also a prefect at school and I have always loved reading. Like Elspeth, I like to stick to the rules and make sure other people do too and, also like her, I have a so called “black and white” way of thinking. Being so obsessed with something that you wake up at night and spend the rest of the night awake to indulge in this obsession is also something I am familiar with. I have spent several hours at night when I should be sleeping reading endless articles about TV shows I have been obsessed with over the years as well as other topics which I have been obsessed with. I have used my phone to Google various topics of obsession at 5 am in the morning! Like Elspeth, I don’t fit society’s narrow stereotypes of what someone with Aspergers “looks like” or behaves like.

Elspeth’s tragic death has led to a lot of debate on Aspergers forums, both on Facebook and elsewhere. I have read comments from some people who blame her suicide entirely on other peoples attitudes towards Aspergers. I personally don’t take that view. Yes, other peoples attitudes towards Aspergers can have a huge impact on the way that someone with Aspergers views their diagnosis but I also think that, even with the most supportive family and friends in the world, as Elspeth had, the nature of the Aspergers mind can make depression highly likely. A lot of us are over thinkers and can ruminate on dark thoughts over and over again. The nature of the condition is fixation and obsession-sometimes our minds fixate on unhealthy and negative thoughts and this can often lead to a downward spiral. I have had some horrendous depressive thoughts over the years. Some of these I can pinpoint as being down to certain events but others come out of nowhere and are just as intense as the ones that have an identifiable trigger.

That said, I do think the article highlights how negative perceptions of Aspergers can be. As a diagnosis, Aspergers acts as an explanation for some of the quirks and eccentricities of our personalities. It’s not something separate, an “add on” that we can take or leave depending on our mood that day (although sometimes I wish it was!) It’s part of who we are and it sounds to me like this is what Elspeth struggled to come to terms with. I do think that not enough is done with people post diagnosis to reiterate this to them and to support them with the process of accepting Aspergers as part of their neurological makeup. Elspeth’s mother had exactly the right idea with buying her the book about Aspergers and talking to Elspeth about famous people with the diagnosis. Unfortunately it seems that Elspeth just couldn’t cope with the emotions that the diagnosis led to and I can certainly empathise with that-I have gone through the same process. I was lucky enough to be diagnosed at the age of eight but, during my teenage years in particular, I found it very hard to accept my diagnosis and I did go through a couple of years when I hated the word “Aspergers” and would try to avoid the topic. Elspeth’s struggle to accept her diagnosis is not unusual among people with Aspergers and, tragically, not everybody survives this struggle. I believe what might help is if different types of Aspergers were given more attention online and also in society in general. The manifestation of Aspergers in Elspeth was completely different than the way it manifests in some other people on the spectrum and yet there are few websites that openly speak about how different Aspergers can be in women and girls. It’s time for the world to realise that Aspergers is a multi faceted condition that has many different manifestations but is still Aspergers.

The second thing that the tragic death of Elspeth can teach people about Aspergers is that, contrary to popular public and medical opinion, we do desire friendship and we do have a desire to fit in and to belong somewhere. I have read peoples individual accounts of being told they can’t have Aspergers because they have friends or because they turned up to the appointment with their husband or wife. Certain professionals believe that having Aspergers means that you are incapable of forming close relationships and therefore, if you are married or have one or more friends, you can’t have Aspergers. This is not only incorrect-it is also incredibly damaging. I have been in a relationship with my boyfriend for almost six years and am blessed with a few close friends but that does not mean that my social interaction is flawless or even decent-it just means that I am blessed with having people in my life who don’t judge me on that. There are lots of people who see us as loners and solitary but most of us are not that way by choice and desperately desire companionship. This is one area of the condition that urgently needs recognition by professionals-don’t assume that we are incapable of having the normal human desires for friendship and belonging. It was this part of Elspeth’s story that affected me the most-she was so similar to me in terms of feeling like she didn’t fit in. I remember listening to the song “Shooting Star” that featured in the movie “Hercules” for the first time and thinking about how it illustrated my life perfectly. There is one particular lyric that talks about the star being “an awful lot like me” and then goes on to say, “Cause he knows he doesn’t quite fit in-he’s longing to know why”. For a lot of people with Aspergers, that is our reality-going through life, knowing that we don’t quite fit in. Even when we have intellectually learned the social rules of society, they don’t come naturally and so fitting in is always difficult. What we need to remember is that, like the Shooting Star in Hercules, we are special. We are talented-Elspeth was talented. People will remember her for being eccentric and what everyone needs to realise is that there is nothing wrong with being eccentric. The world needs all sorts of people to function and never let anyone tell you that being eccentric is a bad thing.

Most of all, I hope that Elspeth rests in peace. She was an amazing girl who just struggled to come to terms with her diagnosis. Regardless of all the debate raging at the moment, we need to remember that a sixteen year old has tragically died and we need to respect her story, even if you have never felt the way that she did.

The A to Z of Aspergers

I got the idea for this blog post from a blog that I follow on here. This blogger wrote a blog post on the A to Z of beauty guidelines and, at the end of the post, said they would like to read an A to Z from other bloggers on any subject that fascinated them so I decided to write an A to Z of my personal experience of Aspergers. This blogger follows me on here so I hope they like it and I hope the rest of you do too. As ever, this is my personal experience of Aspergers so it may not be the same for everyone but I hope it helps to explain more about the condition.

A is for anxiety. This is one of the biggest issues inherent in Aspergers, particularly in my case. If there is something to be anxious about, you can bet that I will be anxious about it. Some things I worry about would worry anyone, such as job interviews, but other things I worry about would be dismissed by most as trivial such as an honest mistake I made years ago which still has the power to keep me awake at night all these years later. Most people have felt anxious in their lifetime over certain circumstances but I live with a different, more pervasive form of anxiety, which sometimes, though far less regularly than it used to, climaxes in panic attacks over things that most people would dismiss as not worth bothering about. I have been dealing with and managing my anxiety since childhood and I understand it logically very well now but that doesn’t always translate into being able to keep it down to a manageable level although, as said, it is so much better than it used to be.I can now make routine telephone calls such as booking a taxi or a GP appointment without having to encourage myself into doing it for half an hour beforehand.

B is for biting. One of my more problematic mannerisms (and we will come on to more of those in the next letter) is biting. I don’t bite other people (which you will be pleased to know) but am constantly biting my nails and, when someone says or does something that annoys or angers me or if I am very anxious about something, my first instinct is to bite my fingers or knuckles (although I do pick at my skin a lot when I’m anxious as well but not when I’m annoyed). I distorted my teeth when I was younger through constantly pushing my thumb behind my top front teeth and pushing my thumb forward leaving the indents of my teeth on my thumb. The biting progressed on from this. This is something I am trying to work on as I know that it’s not a healthy behaviour and I know that I need to find a way to let people know I am unhappy with them verbally rather than taking it out on myself.

C is for compulsive mannerisms. These are physical mannerisms that I feel compelled to carry out. My most longstanding one is that, when I am reading or having a conversation with someone and numbers are mentioned, I have to count the numbers that I see/hear on my fingers, no matter how high they are. Sometimes it makes my fingers ache but I feel ill at ease if I cannot do it or am prevented from doing it. Another physical mannerism that a lot of people don’t understand and see as time wasting is that, after I have read my daily newspaper, I like to read the articles again and circle each line. I find that this helps the information to stay in my mind but I also like the feel of the repetitive wrist motion I make when doing this. These mannerisms are things I find it very hard to explain to people who aren’t on the spectrum but the compulsion behind the mannerisms is shared by many people on the spectrum, even if the mannerisms themselves are different.

D is for depression. A lot of people with Aspergers live with depression. There is a lot of debate as to whether the difference in neurological wiring that causes Aspergers also causes someone to be more susceptible to depression or whether the depression is purely a symptom of living in a world that we are not suited to and that we struggle to understand and vice versa. I personally think it is the latter-I think the reason why so many people on the spectrum suffer with depression is because we strive for acceptance but struggle to get it because society has so many rules and boundaries that we get wrong. The loneliest feeling in the world is wanting desperately to fit in but knowing that you don’t.

E is for executive functioning issues. These are the issues with planning and preparation that can make a lot of people with Aspergers appear very disorganised or leave people baffled as to why someone can hold a university degree but not be able to cook a meal with more than one component as they struggle to time every ingredient to be ready at the same time. A very frustrating aspect of Aspergers for a lot of people and not helped by people assuming that we are just stupid or lazy.

F is for fixations. Some may say that fixations are the same as obsessions but, to me, fixations are more negative whereas obsessions are very enjoyable. I tend to fixate on one thing that someone has said, which is usually negative, even if the rest of the conversation we had was positive. I then mull this over and get stuck in a repetitive circle of remembering it, becoming anxious about it and then over thinking it far more than I need to.

G is for gastrointestinal issues. A lot of people on the spectrum suffer with gastrointestinal issues such as constipation, diarrhea, stomach aches and nausea. Sometimes this is due to a limited diet but I believe a lot of it is down to anxiety and stress. I always feel anxiety in my stomach and, as I am almost never completely relaxed, it makes sense to me that I have a lot of stomach issues from this.

H is for honest. The first positive aspect of Aspergers to be included in this blog. I am a very honest person. I don’t see the point in lying or deceit. I think the world could do with a lot more honesty and would be a lot nicer and a lot easier if everybody was honest with the people in their lives.

I is for insomnia. A lot of people on the spectrum experience insomnia of different types. My form of insomnia is struggling to get to sleep in the first place. It can take me several hours to get to sleep but, once I am asleep, I tend to sleep through until my alarm goes off or until I wake up naturally if it’s not a work day. I know that I don’t get enough sleep. I usually get about 5 hours a night when I’m working. During the holidays, I get quite a bit more and can sleep up to 12 hours at a time!

J is for jealousy. It may not be a popular view amongst people on the spectrum who like to focus on the positives of their diagnosis at all times but I believe that a lot of people with Aspergers are jealous of people without the condition. I know I certainly am as they appear to be able to achieve in social situations as naturally as they breathe whereas I have to work extremely hard to cope in these same situations. I know that jealousy is a highly unattractive trait in a person but I can’t always help it.

K is for being knowledgeable about ourselves. If you have a friend or family member who is on the spectrum, please listen to them, whether this is listening to what they are saying to you verbally or listening to what they are communicating via their behaviour. Like a lot of people with Aspergers, I am very self aware and I know what works for me and what doesn’t. Please know that we are the experts on how our autism affects us and it is different for each person. Listen to what we are communicating to you and trust us. We know our autism-please respect that.

L is for literal thinking. This is pretty self explanatory and I don’t believe it needs much explaining other than to say that most people on the spectrum are literal thinkers so be careful how you phrase instructions!

M is for mood swings. I don’t mind admitting that my mood tends to swing a lot more than most peoples. I watched a documentary recently about people living with bipolar disorder. One of the men featured on the documentary had Aspergers too. I found it fascinating watching him explain how his mood was so heavily influenced by the attitude of the people around him. I am the same. I can go from very, very happy to extremely low in the space of seconds based on the people around me and it’s good to know that there are other people the same out there.

N is for the nagging internal voice that most of us have. The voice that comes in when you are feeling happy about surviving a social occasion to remind you that you were bound to have made some horrific social faux pas which everyone was simply too polite to point out to you. I read a book several years ago by a woman who has severe depression. One of the chapters focused on her “chatterbox”, the internal voice that is determined to bring you down. This really touched me as I have my own “chatterbox” which I frequently have to fight against in order to prevent a downward spiral of negative thoughts.

O is for OCD, something which a lot of people on the spectrum live with, although not always to a diagnosable level. There are different forms of OCD but I do believe that our obsessive natures make us more susceptible to OCD.

P is for perfectionism. A lot of people with Aspergers are perfectionists. I am a perfectionist myself when it comes to certain areas, such as my paperwork at work. I like everything to be very detailed and clear and I like to make sure everything is spelled correctly. I feel very uncomfortable when I read something with spelling mistakes even though I know there are many reasons why someone may struggle with spelling and that it is the content that matters most-I just can’t stop myself feeling uneasy.

Q is the only letter I couldn’t couple with a trait. If anyone can think of one, I would love to know!

R is for ritualistic. This couples together with obsession and also crosses over with OCD traits. Rituals and routines keep me sane and keep me functioning. Without this structure, I don’t know what to expect and can’t cope.

S is for strengths. This blog post may be more negative than positive but everybody on the spectrum has a lot of strengths too. My main strength is my fantastic long term memory. My colleagues at work constantly point out how I remember the tiniest details in life and I wouldn’t have it any other way. Celebrate your strengths-you wouldn’t be you without them!

T is for terrific. No matter how low you may feel, you are terrific and special. Focus on that, no matter how hard things get-better times are ahead.

U is for unique. A lot of people use the term “unique” in relation to me-I take it as a compliment. I know that my mind works differently to most and sometimes that causes me a lot of stress but I wouldn’t have it any other way!

V is for versatile. A lot of people on the spectrum are highly versatile even if we may not seem it when you first meet us-we have to be to survive in this puzzling world!

W is for watching others constantly. I am constantly watching people in social situations and trying to learn from this. It doesn’t always work but I do believe that, over the years, this method has helped to greatly reduce the amount of people I offend through social mistakes.

X is for X ray attention to detail. I mentioned this when I wrote about strengths. A lot of people on the spectrum notice the tiniest details. Life needs people who notice the small details that others overlook.

Y is for yo yoing self confidence. This couples with mood swings a lot. When I am in a good mood, I feel very confident and can recognise how much I have achieved over the years. I hold a university degree when it was once thought that I would be better off in a special school, I have held a job for the past six years when I was once thought unemployable and my blog has been read in 100 different countries. When I am in a low mood, I can’t recognise these achievements at all and just focus on the disappointments I have experienced in life. I think this is common with everyone-everybody is more inclined to dwell on the negative when their general mood is low so it’s not a trait specific to Aspergers but it does begin with Y so I thought it was worth mentioning!

Z is for zeal. If there’s one thing lots of people on the spectrum have, it’s zeal-sheer determination. I am a very determined person and I know that, no matter how long it takes and how many disappointments I experience on the way, I will eventually achieve everything I set out to do.

Well that concludes my A to Z of Aspergers. A mixture of positive and negative but always honest. I hope you have found it interesting.