What is Asperger syndrome?
If you’ve reached our web site you probably have a child who behaves slightly differently to others; you may have been given a diagnosis of Asperger syndrome (AS) or perhaps a friend, family member or someone involved in your child’s education has mentioned it to you. The syndrome covers a whole range (or spectrum) of behaviours some of which you may recognise in your child and some you may not. For this reason, Asperger syndrome is often referred to as a ‘spectrum disorder’. Asperger syndrome is a form of autism and as that too is a spectrum disorder, AS may sometimes be referred to as ‘autistic spectrum disorder’ (ASD).
Asperger syndrome is a life-long disability, so it not only affects children but adults too. Perhaps you are an adult who has just been diagnosed with Asperger syndrome. You may recognise some of these behaviours in yourself.
Typical AS behaviour generally results from difficulties in three main areas:
- • Making sense of the world
- • Dealing with information
- • Relating to other people
People with AS have their own uniqueness, they are usually of average or above average intelligence, are often mild mannered and caring and they try to comply and to do their upmost to follow rules. Because of this, the condition is often described as a ‘hidden disability’ as it is not immediately apparent to anyone else who comes into contact with someone with AS.
The different types of behaviour that characterise Asperger syndrome are described below, with some case studies and examples.
Making sense of the world
Routine and anxiety
people with AS usually like routine and familiarity. They may become anxious and upset if things change and their routines are disrupted or if they are suddenly faced with an unfamiliar situation. Many people may find this unsettling but those with AS could find it much more difficult to deal with because they struggle to make sense of the world around them. Hence their anxiety is much greater. For example, a child in a class room finds that their usual teacher is replaced by a temporary supply teacher they are not familiar with. All the children in the class will feel a little unsettled by this, but an AS child is likely to become very anxious and upset.
If I were to say to Alex, “come on we’re going out”, he would immediately become agitated. He is much happier if I tell him where we are going and when. If it’s someone or somewhere he knows, he’ll probably be OK, but if it’s somewhere new, he would rather stay at home. It takes me ages to persuade him to come with me, using lots of reassurance. So I always have to make sure I give him plenty of notice.
these can affect any or all of the senses; sight, sound, smell, touch and taste. In particular, people with AS tend to be sensitive to loud noises, bright lights, overpowering smells, the textures of food or materials. People with sensory sensitivity may also have lower body awareness, and find it difficult to navigate around rooms without bumping into things, not be able to judge the correct distance to stand away from someone or find it difficult to carry out fine motor tasks such as tying shoe laces. Here are some examples of sensory difficulties:
A person with AS can be over or under-sensitive to touch. They may be upset by the feeling of a jumper against their skin, or sand under their feet. Some may hardly feel pain at all; others may be hypersensitive to it.
With regards to food, it may be both the taste and the texture that cause a problem for someone with AS. They may like very bland food and very spicy food with nothing in-between, or just one or the other. They may like their food separate, or only of a particular colour. They like their food to be predictable and familiar and one bad experience, such as some gristle in a sausage would be enough to put them off for ever.
This can be very often oversensitive and, especially young children, will cover their ears with their hands to block the unwanted noise out. It can lead to a great deal of anxiety for acute sufferers, where simple noises such as a dog barking, a crisp packet rustling or a car horn make even a simple outing painful and distressing.
Bright lights can affect some people with AS who may have to cover their eyes and shy away.
Some people with AS find they have increased sensitivity to smell, where they can pick-up the aromas of things that average people would not. This can encroach on their lives and increase anxiety levels.
Oscar (now 20) will only eat a very limited range of food. Between the ages of 2 and 5 he eliminated more and more food and is very reluctant to try anything new – I can see the fear in him when I try to push it. He will only eat one brand of sausages and if we are out at friends or a restaurant it can be embarrassing when he refuses to eat the sausages he is presented with because he doesn’t know if they are “OK”. Oscar still likes to have all his food separated on the plate and is unhappy if his sausages touch his mash potato
Dealing with information
people with AS often find it difficult to make sense of the world because they are over-loaded with information; they find it difficult to ‘process’ or deal with information as it comes to them. Although not immediately obvious, this is the reason most people suffering with AS don’t make eye-contact during a conversation, as Beth describes below.
When I asked my daughter Beth, why she doesn’t make eye contact when we’re talking, she replied that she doesn’t like to look at people’s eyes as it’s too much to concentrate on. “Trying to make conversation is difficult enough without looking at a face that is moving all over the place – it’s just too much to think about” she said’.
Obsession with favourite topics
obsessions, or an extensive interest in a subject can dominate the thinking of a person with AS. Many persist for a long time, possibly for life, but sometimes they can suddenly change. A person with AS will probably become very knowledgeable about their chosen subject and can go to great extremes to pursue their interests.
Jack has always had a favourite topic, when he was little it was Thomas the Tank Engine and each time we bought a new engine he would keep on until he got the next one, he would watch all the DVDs and read all the books. Now he’s into game shows and watches all the re-runs on satellite TV. He also wants to find out all about the presenters and what other programmes they’ve been on and will bring lines from the programmes into conversation continuously.
Relating to other people
the voices of those with AS can sometimes be monotone/monotanous and children with AS are often described as talking in a very adult way. People with AS often find it difficult to express themselves, which can make it hard for them to get others to understand their feelings, what they want or need and what they want to do. This can be very frustrating for them.
people with AS often find it difficult to follow language in the same way that other people would. As with young children they take everything literally, and do not take on board ‘sayings’ or ‘figurative speech’. They try to understand the words rather than what the person is trying to say to them. So if an AS person is asked, “Can you tell me the names of the last four Prime Ministers?” they are likely to answer with a ‘yes’ or ‘no’. Someone with AS may be unlikely to be able to extend the answers to a question in order to form conversation. Specialist training in social skills can help with this. The use of language can also confuse a person with AS such as if you said, “I have a frog in my throat”, meaning you have a hoarse voice, a person with AS would be left wondering how the frog got there. Since AS is a developmental disorder, those affected do not pick-up such phrases easily, although they will often learn them eventually. However, this is likely to take longer than for other people who would learn these ‘figures of speech’ at a younger age. People with AS find it particularly difficult to understand jokes because they are more likely to take things literally.
At the weekend, my teenage son Sam was desperate to watch the Grand Prix on the television at 12.30 am. I said he could, but joked, “don’t wake the dog when you get up”. Sam set his alarm clock and got up at the required time, but never watched the Grand Prix as he was too worried to switch the television on, in case it woke the dog. Instead he sat on the stairs, distressed at missing the race.
some adults with AS may be described as ‘withdrawn’ while others may sometimes be described unkindly as ‘more outgoing, if a little odd’. Often they want to communicate with their peers but lack the ability to do so. There are several reasons why this might be difficult. Firstly, as mentioned, they may not be able to fully understand the language a person is using when speaking to them. Secondly, people with AS find it difficult to recognize body language, read facial expressions or understand what are called social cues, such as when someone yawns they may be bored, or tired and want to go home. Thirdly, those with AS may have little ‘social imagination’ in other words, they can’t imagine what others might be thinking, or feeling and they can’t predict what might be about to happen. This lack of ‘social imagination’ also makes it difficult to develop friendships as people with AS lack understanding, not being able to imagine themselves in a particular situation. It may also make them vulnerable, as they could be persuaded to do things they shouldn’t because they can’t imagine the consequences. It’s worth noting that even though those with AS often lack ‘social imagination’ they may have a very good imagination in other areas such as art, music or design.
These issues with social interaction also impact schooling and employment. For example, in a classroom or in the work-place, people with AS may find it difficult to work in pairs or as part of a team, or to participate in discussions and meetings. They need teaching and training to be very direct, with clear instructions as to what is expected.
Maisy is far more comfortable in the company of adults, where she will talk endlessly about her chosen topic, and doesn’t even notice if the audience is not interested. She doesn’t mix with people her own age, she doesn’t understand their play. She prefers to be on her own reading books and gathering information’
Impact of Asperger syndrome
Imagine how tough it is to go through life having to cope with some or all of these difficulties along with every day demands. An AS child in school has to try to de-code what is being said to them, deal with loud noises, bright lights and white boards, unusual teachers and routines, smells, social interactions with class mates and helpers then be expected to learn a new activity. Similarly, in the work-place different demands, changes in people and routine, handling the unexpected and coping with sensory stimuli make doing the actual job even more demanding. Consequently, children and adults can get very tired and stressed just managing the basic requirements of life.
Some may have added difficulties as those affected by AS are more likely to have learning difficulties including dyslexia, dyspraxia, or other conditions such as attention deficit hyperactivity disorder (ADHD) or epilepsy.
However, with the right support and encouragement, people with Asperger syndrome can overcome some of these difficulties and lead full and independent lives.