A correct diagnosis can transform life for people living with this ‘hidden’ disability, says Dr Melanie Wynne-Jones
Asperger syndrome affects up to one person in 200, and is a high-functioning form of autism spectrum disorder (ASD), a lifelong condition that affects the way people interact with the world.
The cause isn’t known, but it’s thought to be a brain developmental disorder caused by genetic and environmental factors; it affects more boys than girls.
Unlike autism itself, which is usually diagnosed in early childhood, many people with Asperger syndrome (AS) outwardly cope well, and may have above-average intelligence, and/or reach adulthood before it’s recognised.
AS causes difficulties or learning disabilities that affect social interaction, communication and imagination, often leading to misunderstandings.
For example, people with AS may not be able to ‘read’ other people’s signals, including gestures, expressions, body language, tone of voice, or choice of words (hidden meanings, jokes, or what is not said), although they often have a good vocabulary and good grammar skills.
They may also find it hard to start conversations or make small talk, work out what people are thinking, or understand ‘rules’ about personal space or taking turns; they may interrupt a lot or appear stand-offish.
They often love routines or become engrossed in their own, often limited, range of interests. They may feel over- or under-sensitive to noise, sight and touch, or become upset, angry or resistant if their usual way of doing things is disrupted.
This can lead to distressing anxiety or resemble obsessive-compulsive disorder. Not surprisingly, these emotions and reactions often cause problems for relationships, education and work and other situations.
Adults who suspect they, or their loved ones, have AS, may fear being labelled or stigmatised, especially if they’re mainly coping.
Some high-functioning adults with AS decide not to do anything about it, but a self-diagnosis may be wrong, as AS can overlap with, or resemble, other psychological disorders.
An accurate diagnosis can help everyone concerned to understand what’s going on, what needs the person may have, and the best way to meet them. It may also help the person to feel more comfortable about themselves, provide support for their right to an occupational health assessment and/or reasonable adjustments in their work or education, or open the door to support groups and meeting others with AS.
Your GP can refer you for a full and skilled assessment, such as the Adult Asperger Assessment, which should involve a specialist team and someone you’re close to. It should also include pre-assessment counselling, so you can decide whether to go ahead.
There’s no specific treatment, but lots of ways to make life easier, and the specialist team can advise what’s suitable.
This might include learning how to read people and situations, etiquette, and so on, counselling or cognitive behavioural therapy to help you cope, or advice on education, employment rights and other benefits.
Medication for anxiety or depression can sometimes help too.
5 ways to help people with AS
1 Find out about the condition but remember that people with AS are individuals, not their diagnosis.
2 Explain and help them to understand when interactions go wrong, without appearing to criticise.
3 Ask what you can do to reinforce any support, such as social skills training.
4 Look at the huge range of books for people with AS and their relatives and friends.
5 Contact, or suggest they contact, the Autism Society on 0808 800 4104 (autism.org.uk) for advice and support.