Asperger’s Syndrome is an Autism spectrum condition. Autism is a life-long neurological developmental condition that impacts individuals in several key areas

Sandra’s Story

Sandra is 53 years of age, and shares her home with her rescue cat who is called Alice. Sandra has worked in a variety of roles, mainly administrative. She has many hobbies, most of which are solo pursuits. Sandra was diagnosed with Asperger’s Syndrome at the age of 52.

Asperger’s syndrome is an autistic spectrum condition. Autism is a life-long neurological-developmental condition that impacts on social communication, social interaction, and social imagination. People with autism often experience a number of different sensory difficulties/sensitivities.

Sandra always had a sense of being different, and never felt that she fitted in anywhere. At the time she was at school little was known about autism, and even less about how the condition presented in females. Sandra was often described as ‘quiet’, ‘shy’ and ‘very withdrawn’. Over the years she experienced emotional health problems, including depression, self-harm and eating difficulties.

Sandra experiences higher than average levels of anxiety due to the constant sense of social confusion and the amount of sensory stimuli in the environment. Everyday activities can be overwhelming and leave her feeling drained. She has tended to have a very limited social life, often wanting to try new activities but feeling unable to do so due to the social and sensory challenges. She has started to develop a social life that works for her since receiving support from Autism Guernsey.

Sandra is unable to tune out ‘background’ sounds, so is constantly being bombarded by a multitude of noises. She now wears ear defenders in supermarkets and other environments that are uncomfortable for her. She is also sensitive to artificial lighting, and wears specialist blue tinted specs to ease the discomfort caused by lights. Sandra prefers not to shake hands when meeting people as touch can be painful for her.

Sandra finds it hard to read non-verbal cues and body language, so won’t always pick up on the subtleties of situations. This often results in confusion and anxiety, and she worries that others will think she is insensitive or uncaring. Conversation tends to be fast paced and Sandra struggles to keep up, especially in group situations. She has a preference for communicating in writing or via email, as this allows her time to process all the information and consider her response. She finds eye-contact extremely comfortable, and even painful at times. It is easier for her to listen and concentrate if she does not make eye-contact. One-to-one exchanges are generally easier to cope with than groups. She finds ‘small talk’ rather pointless, but does enjoy discussing things that interest her. Sandra has a good sense of humour and enjoys jokes, but she may not always get the subtleties of some forms of humour.

Sandra needs routine, and needs to know what is going to happen and when. Last minute changes to plans result in panic and stress. She struggles to tolerate lateness; if someone says they will pick her up at 2pm, she will worry if they are late even though she understands intellectually that it is generally acceptable for someone to arrive a few minutes after the stated time, and there may be good reasons for someone not arriving precisely on time. She needs things to be tidy and organised in some kind of logical order. Sandra is a ‘black and white’ thinker and tends to have an ‘all or nothing’ approach to things, so she often finds it difficult to see alternatives or compromises in many situations.

Many common venues can be challenging for Sandra due to noise, lighting, and the numbers of people there. She finds it can help to visit new places prior to an activity or appointment in order to familiarise herself with the environment and identify potential sensory issues.

Sandra has strong work-based skills, and is known for her accuracy, efficiency, persistence, and attention to detail. These skills have often served to cover up or divert attention from her social difficulties.

Sandra comes across as intelligent and articulate, so her challenges are not immediately obvious to others. Over the years she has learnt to disguise many of her difficulties, used ‘scripts’ in the workplace, and avoided situations that she knew would prove too challenging. This further compounded the hidden nature of her difficulties.

Sandra struggled without a diagnosis, and therefore without an explanation for her difficulties, until her early fifties. Since receiving her diagnosis in July 2015 she has been able to make sense of many past events in this new context. Sandra has also been able to be more focused and specific with regards developing coping strategies. Until comparatively recently Sandra was largely unaware of just how different her day to day experiences of the world really are. Although her heightened senses bring challenges, she doesn’t feel she would like to experience the world any other way.

Having a greater understanding of why she feels the way she does, why social exchanges don’t make much sense to her, and why simple everyday things result in more stress than they generally do for others, have been some of the most important things about getting a diagnosis. It was never about having a ‘label’ for Sandra, but about understanding herself better in order to cope better with day to day life. Having Asperger’s can be challenging, but some of the traits are very useful, e.g. being highly organised, quick to spot errors or anomalies, identifying unusual solutions, punctuality.

Sandra feels that having Asperger’s is not a bad thing or something to be ashamed of. It is simply a different way of experiencing the world.

Sandra challenges and tips on living with Asperger’s

Sandra was diagnosed with Aspergers last year at the age of 52. Getting a formal diagnosis has brought many benefits. These include:

  • Being more confident when talking to other people about her condition;
  • Having a greater understanding of who she is and why she has found certain aspects of her life difficult;
  • Being more focussed in her search for coping strategies;
  • Gaining support from organisations such as Autism Guernsey;
  • Meeting fellow Asperger’s sufferers as well as others on the Autism spectrum.

Many of the issues which Sandra faces due to her Asperger’s are invisible which can make it hard for people to be aware or make allowances. She can often be overwhelmed due to sensory inputs, for example loud noises or bright lights. This overload will then lead to anxiety, stress and ultimately exhaustion.

Some examples of the day to day challenges Sandra faces due to her Asperger’s include:

  • Finding it hard to read other people’s emotions and then becoming anxious and guilty about being perceived as rude or uncaring;
  • Difficulty dealing with social interactions generally which often results in her withdrawal from activities or events;
  • High sensitivity to artificial lighting in offices or LED lights on cars;
  • A combination of noises in places like supermarkets where there might be music, announcements, till beeps, fridge whirring, squeaky trolleys etc;
  • Seeing someone out of context (for example not in their normal uniform) can often mean Sandra will not recognise them;
  • Making eye contact is very uncomfortable for Sandra;
  • There are a number of coping strategies Sandra has formulated to help manage her Asperger’s:
  • Head phones to mute the sounds;
  • Special blue tinted spectacles to limit impact of light;
  • Cycling instead of driving or getting public transports;
  • Wait outside of the GP surgery to then be called in;
  • Experiencing events by taking lots of photos and then reviewing then later on;
  • Wearing a bracelet for fidgeting or using a tangle toy;
  • Use scripts and practice before social situations;
  • Take lots of notes and write lists;
  • Sandra feels that there are ways people or organisations could be more accommodative:
  • Autism friendly opening times so that it’s quiet;
  • Give clear instructions;
  • Flexibility in job descriptions to strip out tasks that she finds too hard or that cause too much stress;