Growing up with Asperger’s
Since my diagnosis with Asperger’s syndrome (AS) at the age of 15, I have been leading talks and workshops for parents, teachers, and professionals on autistic spectrum disorders (ASD). One of the most common questions I get asked is “what is it like to grow up with Asperger’s?” As I am about to graduate from the University of St Andrews with a first class honours degree in psychology, it seems like a good time to take a step back and try to explain what it has been like going through life with Asperger’s. While my particular experience will clearly be different to that of others with AS, I hope it provides an idea of the type of differences and issues people with the condition can face.
I regard myself as rather fortunate in terms of my position on the spectrum. My apparent level of functioning is quite high; indeed, this is why I was undiagnosed until I was 15. While my true position on the spectrum is likely to be mild Asperger’s, I have the cognitive skills to be able to compensate. My mind serves as a buffer between my AS and the real world, trying to translate between two very different languages. The result is that I tend to be very aware of things that I can’t do, and where I feel different, while appearing to many as neurotypical.
A world of difference
I did not always understand the differences between myself and those around me as I do now, but there were always some things that I was very aware of. When I was at primary school, I remember watching kids play and thinking that they had some kind of telepathy that I lacked. They seemed to be able to communicate so much with just a sly grin and a shift of their eyes, which I simply didn’t get. However, I was not aware, as I am now looking back, that I seemed to have a lower level of social maturity than my peers.
I remember talking at secondary school about the idea of owning and operating a zoo. I was interested in the logistics of it, how to map out the grounds, how to arrange transportation and the most efficient design. I suggested senior roles my classmates could have in this hypothetical zoo and I tried to involve them that way. This was in stark comparison to my friends, though, who were more interested in discussing real life rather than fantasy.
This social immaturity was evident even later at secondary school when I was still a hanger-on to the social group. I was unable to fully engage with my peers, like a younger sibling wanting to hang out with big brother and his friends. I had only minimal understanding of the fact that I was, in comparison, socially immature. My level of interaction was always three or more years behind my peers.
In addition to the social immaturity, I also felt I had problems with expressing myself. I would often struggle to find the right words to describe how I felt. I had a vocabulary of someone six years my senior, yet my ability to use that language was compromised. Putting words together in a way that explained my current mental state to another person was very challenging. It was made harder by my problems with reading and using appropriate body language and facial expressions. I felt like I was never fully understood and I found it hugely frustrating that my feelings, thoughts and ideas could not be communicated to others.
As a result of these difficulties, it was hard for me to form friendships. When I did, they tended to be either superficial, mostly for passing the time and for protection from bullying, though there were some people with whom I developed a better and stronger friendship. Often, these more developed friendships were created outside the classroom. I met my closest childhood friend at the stables where I rode and worked and we remained close friends until university took us to opposite sides of the country. The reason this worked, I feel, was partly because she did not mind my social immaturity, but saw it as a quirk. Indeed, in my experience, women tend to be more forgiving of such quirks in men, while men often see them more as weaknesses. My ability in romantic relationships was also delayed as a consequence of my delay in social functioning, which restricted my ability to meet people and function well in increasingly complex social situations.
Reading unwritten rules
As I got older, my social and communication abilities continued to improve, but they still lagged behind what would be considered the norm by others. My cognitive development also enabled me to better translate between my AS brain and the neurotypical world around me, resulting in the appearance that, socially, I was like everyone else. Despite this, even now, I do have some difficulties, although the nature of the difficulties has changed somewhat.
Although I have the cognitive abilities to hide many of these problems, and adapt to them, doing so is hard. I have to learn things that most people find instinctual. While I can do more things these days in social situations, they often take practice. I can get comfortable in a new environment or situation, but it takes me longer and can be stressful.
While at University, I found that the social situations could, at times, be almost as much of a challenge as the work towards my degree. For example, many of my friends at university went to a bi-weekly event known as Rocksoc. While I desperately wanted to go with them, because it was such a new situation with a new social dynamic I felt very inhibited and was unable to attend for long. Until I had a full understanding of what was required, what would happen and what to do, I was unable to really enjoy it. I could only focus on the differences, try and decipher what was required and feel desperately out of place. It was two years before I went for long enough to get used to it. Once I got over that hurdle, and learned the new social dynamic, I was able to go with ease and enjoy it.
One area of social interaction that I still have not been able to master is meeting new people. This has not changed as I have grown up, despite the other improvements my cognitive abilities have helped me to bring about. When interacting with established friends, there is a pre-existing definition of the friendship, of common areas of interests and topics to talk about which provide reference points for interaction. When meeting new people, there are none. For me, it feels like trying to navigate a ship. With friends, I know how fast I am going, what direction I am travelling in and my starting point. Therefore, I am able to know exactly where I am at any given moment. With new people, I feel that I have none of this information and could be about to crash into a reef at any moment. When I have made friends, it has been through what I call secondary socialisation. This is where the primary object of the activity is something other than socialisation. During my childhood, for example, it was working at a riding stable. At university, it was through my work with the entertainments crew on the technical production behind events. The primary aim of these actives is to care for horses, or put on events, but a by-product is socialisation. Moreover, these activities provide a reference point for social interaction.
Primary socialisation – situations such as parties, where the primary object is to socialise and meet people – offer no reference points and are therefore much more challenging. A good example of this at my University is the Bop – the weekly club night at the students union, where students go for a good time, to meet people and to pull. For most of my undergraduate career, I was the lighting designer, and later the DJ, for the Bop. While I was always happy to be on stage or behind the scenes, I could never go to such an event as a customer. The idea of being silly and letting go, meeting people, chatting and then moving on – the very nature of this social environment – is one I find hugely intimidating. In addition, I feel far too socially inhibited to dance. Dancing is spontaneous, random yet coordinated and expressive; it is a language of its own. I was a DJ for several years; I know the structure of music and can predict what will come next in a piece of music I have never heard before. I know how to lift a mood and how to get people jumping, yet I cannot begin to comprehend dancing. It is a form of communication that is totally alien to me, yet one that is integral to social communication for many people of my age.
Thinking it through
Despite my ability to mask my AS with cognitive strategies, I am still very aware that I am markedly different from my peers – an Aspie in disguise. While my social and communication skills will continue to grow and mature, there are some deficits that cannot be masked. Those that can be hidden still serve to highlight to me the differences between the Asperger’s and the neurotypical world. This is sometimes very difficult to come to terms with. My AS gives me a lot. In particular, it has given me a fascination with psychology and autism, and allowed me to see things from a unique perspective. However, there is a cost. There are some things that I know I will never be able to do, at least not without a huge amount of work, fear, and pain. I have undoubtedly missed out on many aspects of the student experience. My Asperger’s meant that I chickened out of some key St Andrews student traditions, which I deeply regret.
I have just accepted an offer to study for a Masters in Clinical Psychology at the University of Birmingham. My biggest hopes for this course (beyond achieving the qualification) are that I will be able to use the time to grow more as a person and to try to further improve my confidence and social skills.
During my four years at St Andrews, I know I have grown a lot as a person, but equally, after a while, I have fallen into a pattern – a stereotype of what people think “Josh” is. I hope to change that profile a little at Birmingham, to grow further and maybe overcome some more of the difficulties I face having AS. I can fool most neurotypical people into thinking I am one of them, yet I know I will never be able to be truly neurotypical. Maybe from time to time, though, I will be able to fool myself too.
Joshua Muggleton was diagnosed with Asperger’s syndrome at the age of 15. He is a regular speaker on ASD issues. His first book, Raising Martians, is a guide for parents and teachers of children and teenagers with Asperger’s syndrome: