"The more they say, the more distant I feel": living with Asperger Syndrome
Daniel Crossley talks about his experience of having Asperger Syndrome, and explores what support is available for students and staff with AS at the University
The year I started university, my nan sadly passed away after a short illness. When she was alive we used to visit her several times a year and I became intrigued with the patterns that she had on the lino that covered the bathroom and landing floor. For many years I tried to remember exactly what the pattern was like, even asking relatives what they could remember of it. The only clue I found was a fuzzy, overexposed glimpse of it on a photograph taken one Christmas. I tried various photo-enhancing techniques but to no real avail; I was told that because it was an old pattern I may never be able to find it. However, earlier this year I tried, yet again, looking for it on Google images. To my delight, I found that somebody else had taken a photo of their bathroom lino and posted it on a photo sharing website; it was instantly recognisable to me. Some people think it’s peculiar to focus on such a thing, but it helps me to evoke happy memories.
Most people that I have spoken to around campus say that they have heard of Asperger Syndrome, but very few actually know much about it. Asperger Syndrome (AS) is an autistic spectrum condition, but mentioning this alone can lead some people into assuming a person with AS has profound learning difficulties and is unwilling to engage in social activities. This is generally not the case. People with Asperger Syndrome often have above-average IQs, many reaching the top of their chosen profession. Researchers have often suggested that Albert Einstein may well have had Asperger’s.
I, myself, have Asperger Syndrome but wasn’t diagnosed until several years after I graduated. I was badly bullied at school (both in primary and secondary) for being different and suffered a nervous breakdown when I was 13 years old. My teachers were not very helpful, often blaming me because I found it difficult to join in with other pupils in my class and I was described as being ‘ego-eccentric’ by educational psychologists but, still, nobody mentioned AS.
The key to understanding Asperger Syndrome is to first know what is meant by the ‘autistic spectrum’: at one end you have ‘classical autism’ (as described by Leo Kanner in 1943) and at the other you have ‘high functioning autism’, just above which Asperger Syndrome is generally placed. The main difference between Asperger Syndrome and high functioning autism is that people with AS don’t have a delay in their language development when they are young. Because no two people with AS are affected in exactly the same way, some may exhibit traits associated with classical autism but have more traits associated with the higher functioning end – hence the need to place it on a spectrum. However, with the publication of the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) due out in May 2013, it seems the term Asperger Syndrome is to be replaced with ‘mild autism’, a move which has infuriated many people with the condition as well as several recognised clinicians in the field.
The main difficulties that people with Asperger Syndrome experience are with knowing how to communicate in a social context. They often experience difficulties with non-verbal communication and body language; they might find it hard to tell whether a person is interested in a particular topic of conversation or not, and may unintentionally say inappropriate things to a person without realising that it may cause upset or offence. Making general small talk and knowing how to start and finish conversations is also difficult. People with AS may give too much personal information when they first meet someone and put people off, but again this is not the intention; it may merely be an outpouring of stored-up emotions. People with Asperger’s may have difficulty understanding analogies and often take things too literally. They tend to be excellent at worrying and it is this, together with the social difficulties, that leads many people with Asperger Syndrome to become very anxious, feel isolated and become withdrawn when they desperately want to fit in. This often leads to severe depression.
The main problems that I experience, personally, revolve around feeling very isolated, as if I don’t fit in anywhere. The only being I feel I can really relate to is my cat, Tabitha. Even if I try to join in and talk to other people: often the more they say, the more distant I feel – such as when people talk about their boyfriends or girlfriends and having a great time with their friends, partying and going on holiday together. To me, this is very painful as I keep thinking ‘why hasn’t this happened to me yet?’ Even when watching television, reading a magazine or going for a walk, I am reminded of this. I want to be more social, I want to meet more people and I desperately want to find that special person and this is constantly on my mind, all day and all night; asking myself questions such as ‘how do I approach someone I like? What do I say? Am I saying too much or too little about myself? Am I being too forward?’ I’m painfully aware of my social difficulties and, consequently I get very depressed. When going on holiday by myself and eating out, I feel people are looking at me and wondering ‘why is he on his own?’
Not having an earlier diagnosis has caused much friction within my family as nobody knew what was wrong for such a long time. However, since diagnosis, it’s becoming apparent that other people in the family are showing signs of having AS. Any friends that I had have gone on to pastures new and I feel very alone again.
Obsessive Compulsive Disorder (OCD) is common in people with Asperger Syndrome and is usually a result of the social anxiety. Having a specific, repetitive routine can be comforting and any deviation from this can lead to further stress. People with Asperger Syndrome often have an intense interest in specific things, such as computers, and may go into great depth when asked about them; this often rationalises their choice of academic studies and career. Spending many hours a day immersed in a specific interest can be a way of avoiding problematic social interactions as computers, musical instruments or animals, which tend not to answer back!
Since my diagnosis, I have tried to seek support in the Leeds area and even in Spain but most of what’s available is more suited for people at the other end of the spectrum. I have often felt that there isn’t any proper support anywhere; I’m fed up with being passed from person to person when all I want is for someone to talk to without having to make an appointment or feeling judged. Either I am too old or too young for any useful interventions that might benefit me. Counselling has not worked for me and neither has medication. Despite these difficulties, I have still managed to gain postgraduate qualifications; but it is easy to become frustrated because of my experiences.
Katie Hamilton, president of the ‘Mind Matters’ society, is hoping to raise awareness of the condition, as well as other mental health problems through campaigns and talks, and realises the social pressures that students with AS face. She has said that the society is currently in the process of setting up a survivor-led support group to encourage people to talk openly about their problems in an informal and supportive setting. Katie Siddall, Leeds University Union’s Welfare Officer, admits that she has so far had little contact with people with AS and can only signpost students to services that might be able to offer the appropriate support. However, she recognises that people with AS can be discriminated against because of lack of understanding about the condition, a point echoed by a member of staff with a diagnosis of AS who questions the need for disclosure for fear of being stigmatised. He personally feels that the needs of staff with AS are currently not fully met by the University, saying “I’m not sure why staff with AS are invisible to the University; maybe staff with AS just assume they are supposed to muddle along without support.” He goes on to say that building friendly relationships with his personal tutees can be “challenging” and that there is a need for more understanding and support for staff as well as students from the university community as a whole.
Since 2007, Harriet Cannon, the Disability Coordinator for Autistic Spectrum Conditions at the University, has been providing an excellent support package for students with AS, including help with academic issues, exams, accommodation and getting a diagnosis. She says, “We are very lucky at Leeds… We are one of the only Higher Education institutions to have a disability coordinator with a specific remit for supporting students on the autistic spectrum.” As well as liaising with academic departments and with other services within the University, such as Student Counselling, she works very closely with a not for profit organisation called Spectrum First Ltd to provide specialist strategy support for individuals. The Equality Service also provides dedicated mentors who specialise in supporting students on the autistic spectrum.
Emma, a final year BA Asia Pacific Studies student with an, as yet, unofficial diagnosis of AS feels very happy with the support on offer. She finds it “refreshing to have people like myself in my university environment,” but also feels that there is a need to raise more awareness. She suggests that the university has a ‘neurodiversity’ month. Before starting university, she says that she was “self loathing” over her poor social skills and that she grew “tired of dealing with the facial expressions in each individual”.
I hope that by reading this you are now more aware of the general difficulties faced by people with Asperger Syndrome, and if you have AS know that you are not alone. As Bill Gates once said, “Look after the nerds, they may become your boss.”