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 Social Interaction Versus Mental Wellbeing Dilemma

As I have mentioned before in this blog, those of us with Aspergers have to learn social skills the same way that the average person learns intellectual skills. As a 27 year old, I have had many years of learning social skills and I am fortunate in that I can get by pretty well with the social skills I have learned. I can make and attend my own doctors appointments and I can cope very well with every predictable scenario that I get involved in. If there is a conversational rule that has to be stuck to in a certain scenario, I am fine and most people who don’t know me would probably be unlikely to realise that I have a social and communication disorder  because I have memorised the route that the conversation will take and I play my memory back and recite the same words as I did last time. This is how we come across as functioning adults.

However, as these are intellectually learned social skills, they disappear when I have the misfortune to be tired, ill, anxious or stressed. Currently I am suffering with hayfever which mean that my eyes and nose are constantly streaming, I have a constant headache as a result of my congested sinuses and my ears are blocked, again due to sinus congestion. Antihistamines have little effect. I feel extremely lethargic and this affects my social interaction as well as other skills (you’ll probably notice that this blog post isn’t written as well as some of my others because my brain doesn’t work as well when I am ill). When I feel as ill as I do, I am unable to maintain social interaction to the standard I normally can do. I know that a lot of people lose the motivation to socialise when they are not feeling at their best but, with me, it’s not a case of not wanting to socialise-I physically can’t because I lose the ability to recall the social skills that I have learned. As a comparison, I could ask someone who’s not on the autistic spectrum to think about how difficult it would be to hold a conversation in a foreign language that they have a good knowledge of usually but that is not their home language when they are extremely tired. Most people would probably agree that they would find it very difficult to string their sentences together in this other language because of the way that tiredness has affected their ability to recall this language and speak it coherently. For me, this is what happens with my social skills. Social skills are a foreign language to me, one I have worked hard to remember and use in everyday life but one which does not come naturally. When I am forced to interact socially when I am not in the best state, I find it extremely difficult and any bystander would probably see me as rude because I tend to speak as little as possible and avert my eyes because I don’t have the energy to maintain eye contact.I would go so far as to say that it damages my mental wellbeing when circumstances force me to interact when I am not in the right mood-it often puts me in a stressed mood for the rest of the day. 

This is one of the areas where I feel those of us with Aspergers are misunderstood the most. People don’t understand the intellectual approach that we have to make towards learning enough social skills to survive in society because it is alien to them. To most people, being able to socially interact with other people is as natural as breathing. Even when my friends without Aspergers are going through a tough time emotionally, they still manage to interact socially on a basic level with other people. I guess the other factor here is that most people can hide their true feelings and still interact with others. When I am stressed, it is not uncommon for me to remain silent for an extended period of time even when there are other people around. I know that they probably consider me to be rude or stand offish but I just cannot force myself to interact. In my opinion, this is one of the most disabling aspects of Aspergers. We do know that we need to interact to live in society but our neurological makeup only permits us to interact with people in a “normal” way when we are in a certain state of mind.

I am sure that there are people with Aspergers who can interact better than I can just as there are other people with Aspergers who have more issues with social interaction than I do. I have come across people with Aspergers who live completely solitary lifestyles with extremely limited interpersonal interaction. For me personally, I am too much of a people watcher to opt for such a lifestyle but I can understand why certain people opt for it. Above everything else, I urge my readers who aren’t on the spectrum to try and think how hard it is for us and please don’t assume that we are just being rude or difficult when we can’t speak with you-sometimes our brains are just too overloaded with other issues that are going on in our lives and we just don’t have the energy for interaction. It is not a personal rejection-it’s just one of the more disabling aspects of this condition.