How awareness of Aspergers has changed during my lifetime.

I can remember finding out that the reason why I behaved the way I did was due to Aspergers Syndrome. I came across a piece of paper in my house with a hand drawn triangle on it. Each side of the triangle had one of the areas of the “Triad of Impairment” (the well known diagnostic tool in which a person must have impairments in social communication, social imagination and social relationships) written around it. I don’t agree with the term impairments but I am using it here because that is the diagnostic language used. Personally I think that the way people on the autistic spectrum communicate is not impaired-it’s simply different from the way most people communicate and, if you take the time to communicate with someone on the spectrum, even those on the severe end of the spectrum, in the way that they find easiest, communication is not impaired-a lot of people with autism know exactly what they want to say-we just need to find the correct resources to help them express this. Anyhow, I digress as this is really a topic for another day.

Anyway, the only other thing it said on the paper was the term “Aspergers Syndrome”. I had known for years that I was different to other children-I felt it instinctively. I wasn’t interested in the things that other young girls were interested in-my overwhelming interest, which is one I still have today, was medical conditions. My parents had collected a series of Question and Answer booklets relating to medical conditions as alphabetized from A to Z. These were known as “Doctors Answers” and I read them from cover to cover over and over again. Even now, I can identify conditions that most people would  have never read about from hearing the common symptoms and, every time I come across a condition I have never heard about, I research it. I remember seeing different professionals throughout my early childhood and I remember vividly the day that my parents were given the final diagnosis back in the days when Aspergers was a new diagnosis having only been included in the DSM the year before. The child psychiatrist I had been seeing asked me to leave the room and I had to sit out in the receptionist area. I remember sitting on a spinning chair and spinning rhythmically until my parents came out of the room. I now know, of course, that what they were being told in that room was that I had Aspergers Syndrome. I could hear sporadic bursts of laughter at various points interspersed with periods of silence. I know that they weren’t planning on telling me about Aspergers until the time came for me to transition to secondary school. I was only eight years old and they thought that this was too young to understand fully what Aspergers meant. 

I was nine when I discovered what Aspergers meant. I found that piece of paper and it didn’t take me long to read the other literature on Aspergers that was in the house and make the connection that this was describing all my little quirks and eccentricities. I knew that I had never heard of anybody else with Aspergers and felt strange that it seemed to just be me who was living with this. Shortly after that day, my family went on a holiday to Tenerife. Being dyspraxic as well as Aspergers, I used to be extremely slow at getting dressed as a child and, on this particular day, my brother and sister, who were ready long before I was, went down to the hotel buffet breakfast with my mum first and I went afterwards with my dad. I remember calmly asking my dad over a plate of pancakes with chocolate sauce, “Do I have Aspergers Syndrome?” I remember the silence and the look on his face and I remember knowing instantly that the answer was “Yes”. 

When I was in primary school, Aspergers was pretty much unheard of with myself being the first child with such a diagnosis in my teacher’s classes. I was visibly different from the other children-I was statemented and had a 1:1 assistant in class-I know that she reads this sometimes so I want to take this opportunity to say Thank You so much for all that you taught me all those years ago-you were brilliant. When I reached secondary school, there were a few more students in the school who I knew had Aspergers. Social skills sessions took place once a week where those of us with Aspergers learned conversation skills and turn taking in conversations. During this time, I realised that my teachers seemed to know more about Aspergers as I progressed through the school. In subtle ways, they were making it easier for me to communicate with them and to achieve. By the time I was fourteen, I would identify myself as having Aspergers to people who needed to know and I was able to talk them through my individual manifestation of the condition. When I went to sixth form college, I realised that a lot of people there had come across Aspergers in classmates at secondary school and I didn’t have to explain quite so much. At university, I had even less to explain. Nearly everybody I came across and mentioned Aspergers to had heard of it and knew a little about it and just required the gaps in their knowledge to be filled. 

Now, Aspergers has become pretty mainstream. I would say that 99% of people I come across in life have heard of Aspergers either through knowing someone personally who has the condition or through seeing it represented in the media or reading fictional books based around characters with Aspergers Syndrome (the most well known one being “The Curious Incident Of The Dog In The Night Time”). There are, of course, both positives and negatives to this vastly increased awareness. The main positive is that people with Aspergers find it easier to find tolerance and acceptance in society because the condition is so well known about. Blogs like this one are common place throughout the Internet-those of us in the Aspergers community have a voice and can use the fact that we can communicate so much about the reason why we do things to try and help people understand why those on the spectrum who cannot express themselves in the same way do similar things. On the negative side, there are still lots of people out there who meet someone with Aspergers and, upon finding out they have Aspergers, find it difficult to believe because they are not an exact carbon copy of Sheldon from the Big Bang Theory (I myself find Sheldon hilarious but he is hugely, hugely stereotypical of someone with Aspergers) or because they struggle with Maths or Computing. I believe that the more people meet someone with Aspergers who does not present with the stereotypical manifestation of the condition, the more awareness will continue to spread.

The other main negative is one I have mentioned before in my post about self diagnosis versus official diagnosis. Awareness of Aspergers has increased vastly over the last few years but this has led people to believe that it is purely a social difficulty and there are a significant minority of people out there who do not present with the quaint “Triad of Impairment”. There is a lot of discussion among professionals of making this a “Square of Impairment” to take account of the fact that sensory issues present in almost everyone on the spectrum in varying degrees. However, the term “Triad of Impairment” may be old fashioned and vastly simplistic when considering how complex the autistic spectrum is but it is a diagnostic tool for a reason-if someone doesn’t meet the criteria set out in the “Triad” to varying degrees in all three areas, it is extremely unlikely that their difference is down to an autistic spectrum condition. I know that the “Triad of Impairment” is confusing to many-for years, I believed that I had no impairment in the imagination area because I am highly imaginative and creative when it comes to writing. It took me a while to discover that the phrase “social imagination” refers to being able to predict people’s reactions to your behaviour and being able to deal with flexibility and changes  in routine and this is something that I have always struggled with. However, it has remained as the main diagnostic tool for a reason.

In closing, I would say that the rise in awareness of Aspergers is largely a brilliant thing-I no longer feel like I am the only person living with this condition and, the more I read accounts of other people with Aspergers, the more I realise tiny little quirks I have are more than likely a result of the Aspergers. However, awareness needs to be accompanied by education and that is, in part, why I set this blog up. I would like to remind people that, once you have met one person with Aspergers, you have met one person with Aspergers (and the same applies to people with classic autism as well)-we are all different and the Aspergers manifests itself in different ways between individuals. 

Why routine is so important for people on the spectrum

The idea for this post came from a conversation I had with my father yesterday afternoon. He suggested that it would be a good topic to explore on my blog and reminded me of a particular incident that happened a couple of years ago so I decided it would be as good a topic as any to write about on here.

I personally believe that everybody on this earth has their own little routines that they prefer to stick to. I think that the difference between people on the autistic spectrum and people who aren’t on the spectrum is the importance we place on these routines. I know that people who aren’t on the spectrum often describe routines as “comfortable”-people who are on the autistic spectrum often use routines as survival techniques and hence can become extremely distressed and bewildered when these are unable to be completed for any reason. Routines are the only certainties we can rely on in a world that is so confusing for us.

I like to think that, among the community of people with Aspergers, I am one of the more flexible people. I will change my shifts at work if I am asked beforehand to help colleagues out, for example, and, if plans are changed with notice, I am usually happy to go with the new plan. I don’t have specific places that I need to go to when I go out-I will eat anywhere there’s food and sometimes I will just look for a restaurant that looks like it serves nice food rather than deciding beforehand. However, there are some things that have happened over the years that have made me realise that, actually, in certain ways, I am extremely reliant on routine.

The specific example I am thinking of and was talking about on the phone yesterday happened a couple of years ago. I really wanted a new phone and had opted for the IPhone 4S as lots of my relatives had this model and I already knew how to set it up (I get hugely frustrated when technology doesn’t work properly when setting things up but that’s a topic for another time!) I picked a date to go to London and get an IPhone 4S and put it in the calendar on my phone. When the day came, I went up to London, chose the model, chose the colour and was all ready to take it home. Unfortunately, the credit check had to go through Carphone Warehouse and I had no credit rating as didn’t have a credit card so I failed their credit check. The man on the other end of the phone then said, if I paid an extra £200, I could leave the store with the phone anyway. The sales assistant said that this was a ridiculous price to offer, as did my dad, but I was so determined to leave the store with the phone that day as it was that day that I had scheduled to get the phone. Eventually I ordered the phone from another store but still had to wait a day for the delivery. I was hugely disappointed and frustrated that I had come back from London with no IPhone 4S. Most people would not even consider spending an extra £200 just to have the phone then and there but, if I was shopping alone, I probably would have paid it over.

I tend to find that it’s the little routines that I rely on more and these help me to be more adaptable when it comes to big changes. On occasions, I have taken the bus into the nearest town to get my specific daily paper even when the shop across the road has been full of different types of newspaper with probably exactly the same articles. People will often say to me, “Why don’t you just read it online?” but another Aspergers trait of mine is that I have to physically feel the pages in my hands. The only time I will ever read the newspaper online is on a Sunday and that’s because I don’t like all the supplements that come with it on a Sunday. Another time, I had planned to go for lunch with a friend to a local restaurant that serves fantastic spaghetti bolognaise. When I got to her house, she realised she had chosen the wrong day as she had to stay in to look after her younger brother. A minor change in schedule but crushingly disappointing for me as I had planned to have this spaghetti bolognaise meal for days beforehand. I have lots of little routines in place-on Mondays and Tuesdays, for example, I always go to the local village shop with a work friend of mine during my 2 hour break from work to buy my newspaper. Some of my routines are not helpful to me-I have had to fight to get out of the routine of ordering takeaway pizza every Wednesday night, for example (still an ongoing fight). Like most people on all levels of the spectrum, once I have done something a couple of times, it quickly becomes stuck in my routine and it can take years to change the little routines. However, like I have mentioned before, big changes don’t phase me as much and I believe that this is because the little things never change.

I know that our love of routine can often be misunderstood and even mocked by other people who lack the understanding of conditions on the autistic spectrum. For those of you who aren’t on the spectrum, please stop next time you see someone who is reliant on routine and becoming upset that this is being changed without their notice or consent and remember that these small routines are sometimes literally the only thing keeping that person functioning in a confusing and mixed up world. Try and give them some space and understand that they are not just being difficult-it is genuinely hard for them to accept  changes.

The ever present diagnosis debate

One of the things that I have noticed through using online forums and support groups for people with Aspergers is that one debate that pops up incredibly regularly is what I term the “diagnosis debate”-in other words, are you self diagnosed or professionally diagnosed?

Let me start off by clarifying here that, unlike some people I have come across, I have nothing against self diagnosis of Aspergers Syndrome. I know how expensive it is to get a dignosis of Aspergers in the United States so lots of adults living with Aspergers Syndrome in the US simply cannot afford a professional diagnosis, and I also know that ease of getting a diagnosis varies hugely in the United Kingdom depending on how much local professionals know about Aspergers. There is also the fact that a lot of people with Aspergers who weren’t diagnosed as children fail to obtain a diagnosis as an adult because it is naively and wrongly assumed that it clearly can’t have affected them that much or they would have been diagnosed before. There are lots of other reasons why obtaining a professional diagnosis can be hard-some people have grown up in cultures that have no understanding of a condition such as Aspergers, some have existing diagnoses that mean professionals are reluctant to consider Aspergers, feeling that any symptoms of Aspergers can be explained away as a result of their other diagnoses, and some people feel that getting a professional diagnosis would alienate them from people.

For lots of people out there who are self diagnosed, they do undoubtedly fit the diagnostic criteria for the condition. Indeed, I have come across a lot of people online who describe reading a website about Aspergers and feeling overwhelmed by how similar it is to their own experiences and how much it explains their life to date. I must admit that, as someone who was professionally diagnosed at the age of eight, I have never had to experience going through life, not understanding why I do certain things a certain way and not understanding why I see the world so differently from others. I can only imagine the sheer relief at reading up on something and thinking, “That’s me!” Living with Aspergers can be hugely isolating-living with Aspergers without knowing that you have Aspergers must be even more so. Accepting that there is a reason for your eccentricities and quirks means that you find a sense of belonging among the Aspergers/autism community online and this means that, for some people, it is the first time they have been accepted as themselves anywhere.

However, there are people out there who I think self diagnose themselves a little too quickly and probably would not fit the diagnostic criteria if they were to see a professional. I am attempting to be as diplomatic as I can here as everyone has their own reasons for self diagnosing, as mentioned earlier. One thing I have come across a lot online is people who have self diagnosed themselves with Aspergers based purely on the social aspect of the condition. This is not unusual as it is the social aspect that is most well known about and most well written about. Ask the average person who does not know anyone with Aspergers personally to describe the condition and they will probably say something like, “A bit of a loner” or “prefers to keep themselves to themselves” or variants of those two observations. As awareness is rising, the other aspects of the condition, such as the sensory issues, the difficulties with language and the need for routine in a lot of cases are receiving more recognition but, in most people’s minds, it is still the social aspect that is forefront. I know that Aspergers differs hugely from person to person-some people don’t have any need for routine and can be spontaneous, some appear to have no sensory issues and some socialise easier than others but, from my experience only, most people with Aspergers, including myself, have a combination of symptoms from different areas of neurology, not simply the social symptoms. There is a reason why diagnoses of conditions on the autistic spectrum have to meet the criteria of a triad of impairment (which lots of people on the spectrum as well as professionals think should be made a square of impairment to incorporate the sensory issues that have such an impact on the lives of people on the autistic spectrum). I think that it is more of a problem in society that leads people to want to explain their social difficulties with a diagnosis. Why can society not accept that there are all sorts of people and that some people are more introverted than others or struggle to make small talk? Some people are not naturally social and will never be so, whether they have Aspergers or not. Being introverted and retreating away from social situations does not automatically make you Aspergers, yet I have met people online who think exactly that. I genuinely believe that if society was more accepting of people who are simply not wired to be social, people would not feel the need to search for diagnoses to explain why they are not social. I also feel that a lot of the social difficulties experienced by people on the autistic spectrum arise from difficulties in the other areas, such as difficulties with language and sensory processing and the obsessive nature of people on the spectrum.

As mentioned before, I  have nothing against self diagnosis and understand why there is a need for it in a lot of cases but (and I know this will probably come across as patronising so apologies if it does but it was not my intention) I feel that more research should be done before self diagnosing yourself with something as complex as Aspergers. Look beyond what you first read and get to know people with the condition, either on or off line, so that you can see the other ways in which it affects people. I know that the majority of people who are self diagnosed have done this already but I also know that there are people who have seen websites about Aspergers and felt that it instantly explained why they have such a hard time socially without looking further in depth into the other facets of the condition.

I hope that the above content has not offended anybody-I know that it is a sensitive topic and, if this has upset anyone, I apologise. I was merely attempting to point out that self diagnosis has its pitfalls. Of course, there is no guarantee that professionals get it right all the time either but please remember that Aspergers is a hugely complex condition and goes so much deeper than simply the social side of it.

Social Networking and the autistic spectrum

This is a post that I have been meaning to write for a while. As those of you who know me personally can verify, I am an avid user of Facebook and it is through Facebook that a lot of people find my blog (I post a link to my weekly blog post on my page) according to the WordPress site statistics. In general, I think that social networking is a positive thing for a lot of people throughout the autistic spectrum but, like everything in life, there is the negative side too.

First of all, I will start with the positives. The key positive aspect of social networking for me is the freedom that it gives a lot of people with Aspergers and other forms of autism. A key factor in Aspergers is feeling socially isolated. I believe that the typical online social network is an antidote to this-you can communicate and socialise with other people from the comfort of your own home. You don’t have the pressure of maintaining eye contact or trying to understand the other person’s body language. You are free to communicate openly about whatever you desire without the dreaded awkward silences or being looked at with an expression indicating complete boredom because you have obviously talked about your topic of interest for too long (a look I was so used to getting as a child that I can now interpret perfectly). There are so many special interest groups on Facebook that I would bet that almost every hobby/interest in existence is represented on Facebook. We no longer have to feel out of place because we are interested in topics that people in our off line lives have no interest in. It also removes the language barriers. A high number of people on the spectrum communicate better through typing than through speech, particularly when discussing topics that may be emotive. I have come across people online who cannot communicate verbally at all but type in a highly eloquent and articulate manner. Technology has given them freedom of expression and social networking sites have given them the opportunity to express themselves to more people.

The second positive aspect of social networking is the opportunities that it gives you, in terms of meeting other people on the autistic spectrum. Through Facebook and other Internet forums such as Wrong Planet, I have met people on all levels of the autistic spectrum who come from all over the world. This is particularly fascinating for me as I love learning about different cultures and also about how autism is treated in different countries. It is invaluable to a lot of people on the spectrum who have never met other people on the spectrum in their off line lives. I am lucky in that I know several people with Aspergers who I met as a child and at university and we meet up regularly. I know that, for a lot of people with Aspergers, they only get to socialise with other people with Aspergers online and this is why social networking sites can be invaluable to us-we realise that we are not the only people who are struggling with a certain aspect of life with our condition and we share experiences and offer support and advice. 

The third positive aspect of social networking is the way that it can be used to educate more people and raise awareness amongst a higher number of people than is possible off line. Certain videos or posts made on the Internet “go viral” almost instantly, reaching people across the world in less than 24 hours. Online petitions and campaigns can be passed around sites such as Facebook extremely quickly. A lot of people on the spectrum take on the role of online advocates, educating people about what life on the autistic spectrum is like. Autistic spectrum conditions are extremely complex and rarely fit precisely into what is written in the textbooks or medical journals. Through the Internet, awareness of what it actually feels like to live with an autistic spectrum condition has, in my opinion, risen. In my experience, most people now have some idea of what Aspergers Syndrome is. They may not be able to tell that someone has Aspergers unless that person chooses to tell them but the awareness is getting there. I am not going to pretend that there’s not still a long way to go but every little bit of awareness helps. Through blogs, YouTube videos and posts on Facebook and other social networking sites, people on the autistic spectrum are having our voices heard and listened to-this is one of the best things that social networking has brought us as a community.

There are other positives of course such as being reunited with people from your past but those are the main three. I will now move on to the negatives.

Somewhat obviously, the main negative aspect of social networking or indeed any website that has a Comments feature, is cyberbullying/”trolling”. The Internet is full of people who appear to have nothing better to do with their spare time than make hateful and vicious comments. These individuals do not just target autism sites-they consider anything as “fair game”. Indeed, some of them sink so low into the depths of humanity as to target sites set up in memory of individuals who have died, something that the majority of people would, rightly, never dream of doing. Unfortunately for the rest of us, basic human compassion is not a prerequisite for an Internet connection. It is hard to ban these individuals from sites where they have caused offence as they can just as quickly set up another account and do the same thing. A lot of people fail to realise how damaging cyberbullying is, particularly when the victim already struggles with low self esteem and feelings of isolation, as many people, both with and without autistic spectrum conditions, do. Everyone has their own issues to deal with and, for me, the fact that some small minded individuals choose to deliberately make someone feel worse than they already do is sickening.

Related to the above point is the fact that a fair number of people on the autistic spectrum have difficulties with controlling emotions. I know that, for me personally, when someone or something makes me feel bad, my mind has a tendency to fixate on it for a long period of time, hence my New Years Resolution. When people are being bombarded with malicious comments, it can be extremely hard to “switch off” from that when the way that your brain works is to continually focus on what has been said so that it goes round in a never ending loop, rather like a stuck record. This is why people should consider what they are saying before they say it as a trivial comment can often cause someone who has problems regulating their emotions untold distress and anguish. I know that there are countless people on the spectrum who were so bombarded with hurtful comments that they took their own lives. People need to stop and think and remember that every action has a consequence.

On balance, I believe that social networking is overwhelmingly positive but the negatives of it are very serious and cannot be dismissed or ignored. If everyone remembered that everyone has feelings and that hurtful comments often ruin what self esteem someone has and thus refrained from making them, the world would be a better place. Constructive criticism is fine-mindless and malicious bullying is not.

My New Years Resolution

Firstly, I would like to wish my readers and followers a Happy New Year. I hope that 2014 is a fantastic and blessed year for every single one of you.

I usually never make New Years Resolutions because I don’t have the willpower to stick to them and, when I fail at them, it frustrates me. This year, however, I have decided to make a New Years Resolution that I really want to keep. Those of you who have me on Facebook may be aware of this resolution already so apologies for the repetition but I figured making it public would make it less easy for me to break.

My New Years Resolution for 2014 (and hopefully beyond) is to be kinder to myself. As I have mentioned on this blog before, I am my own harshest critic and often give myself a hard time for minor mistakes that I would tell anyone else not to worry about. My mind has a tendency to come up with the most vicious put downs ever, much more vicious than any put down said to me by someone else. Once I am stuck in a cycle of negative thinking, it is extremely hard to break out of it and see the world as a positive place. When I am in one of these moods, everything in the world appears tainted and nothing anyone says or does to try and support me works. The only person who can break the cycle is me and, this year, I intend to do so permanently.

This, of course, is not to say that I will never fall into feeling low or frustrated again-that would be foolish to assert as these emotions are part of life. However, when I do notice that I feel this way, I will try and engage in an activity that distracts me from how I am feeling and attempt to fill my mind with positive thoughts rather than focusing on the negative ones. There is so much good in this world-I just need to concentrate harder on finding it and that will not happen when I am constantly focusing on what is wrong in the world.

I hope that, in time, the process of positive thinking will come naturally to me and I won’t have to concentrate quite so much on it but, for now, I just need to be thankful for what I have. I have a fantastic family, fantastic friends, a good job, a nice, self contained flat in the staff accommodation where I work and this blog has been read by a lot more people than I expected when I wrote that first post back in August last year. I thought a couple of people might read it on a couple of occasions-the support it has received has been amazing. Thank you so much to each and every one of you for taking the time to read it.

May health and happiness be with you this year (and if you see me breaking my New Years Resolution, feel free to firmly remind me of it!)