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. 

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2 Responses to How awareness of Aspergers has changed during my lifetime.

  1. MaryQueenofSpots says:

    Thank you for your explanation about the meaning of social imagination, it makes a lot more sense than many of the other things I have read.

    I don’t know if you answer questions, but, if you do, I have one.

    Were you curious about other peoples reactions? Did you ever do something you had been told not to e.g. “If you say fart again while we are sitting in the cafe I will take your Lego away”, just to see what would happen?

    • sjmarsh2013 says:

      Hello. I’m glad you enjoyed my post. Yes I am always happy to answer questions. I am often curious about people’s reactions but would never test them in the way you describe. I am not sure why-I am extremely passive and can’t ever bring myself to go against something I’ve been asked to do, even if I want to rebel. I hope that makes some sort of sense 🙂

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