Asperger syndrome and other terms
'Asperger syndrome' was introduced to the world by British psychiatrist Lorna Wing in the 1980s.
The term derives from a 1944 study by Austrian paediatrician Hans Asperger (new evidence about his problematic history has recently been revealed and provoked a big debate).
Many people who fit the profile for Asperger syndrome are now being diagnosed with Autistic Spectrum Disorder instead. Each person is different, and it is up to each individual how they choose to identify. Some people with a diagnosis of Asperger syndrome may choose to keeping using the term, while others may prefer to refer to themselves as autistic or on the autistic spectrum.
Autism is a spectrum condition. All autistic people share certain difficulties, but being autistic will affect them in different ways. Some people with Asperger syndrome also have mental health issues or other conditions, meaning people need different levels and types of support. People with Asperger syndrome see, hear and feel the world differently to other people. If you have Asperger syndrome, you have it for life – it is not an illness or disease and cannot be ‘cured’. Often people feel that Asperger syndrome is a fundamental aspect of their identity.
People with Asperger syndrome don't have the learning disabilities that many autistic people have, but they may have specific learning difficulties. They may have fewer problems with speech but may still have difficulties with understanding and processing language.
With the right sort of support, all autistic people can be helped to live a more fulfilling life of their own choosing.
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Autism, including Asperger syndrome, is much more common than most people think. There are around 700,000 autistic people in the UK – that's more than 1 in 100. People with Asperger syndrome come from all nationalities and cultural, religious and social backgrounds. Historically, more men have been diagnosed as autistic than women, although this is beginning to change.
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Some people with Asperger syndrome say the world feels overwhelming and this can cause them considerable anxiety. In particular, understanding and relating to other people, and taking part in everyday family, school, work and social life, can be harder. Other people appear to know, intuitively, how to communicate and interact with each other, yet can also struggle to build rapport with people with Asperger syndrome. People with Asperger syndrome may wonder why they are 'different' and feel their social differences mean people don’t understand them.
Autistic people often do not 'look' disabled. Some parents of autistic children say that other people simply think their child is naughty, while adults may find that they are misunderstood.
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Some people see a formal diagnosis as an unhelpful label, but for many, getting a thorough assessment and diagnosis may be helpful because:
- it helps people with Asperger syndrome (and their families, partners, employers, colleagues, teachers and friends) to understand why they may experience certain difficulties and what they can do about them
- it allows people to access services and support.
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The characteristics of Asperger syndrome vary from one person to another, although there are some key traits that autistic people share. These are:
- persistent difficulties with or differences in social communication and social interaction
- restricted and repetitive patterns of behaviours, activities or interests since early childhood, to the extent that these impact negatively on day to day life.
The diagnosis process usually involves a multi-disciplinary diagnostic team - often including a speech and language therapist, paediatrician, psychiatrist and/or psychologist.
Because Asperger syndrome varies widely from person to person, making a diagnosis can be difficult. It is often diagnosed later in children than autism and sometimes symptoms may not be recognised and diagnosed until adulthood.
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Autistic people, including those with Asperger syndrome, often communicate differently. They may have difficulties with interpreting both verbal and non-verbal language like gestures or tone of voice, or it may take them a little longer to understand. Some autistic people have a very literal understanding of language, and think people always mean exactly what they say. They may find it difficult to use or understand:
- facial expressions
- tone of voice
- jokes and sarcasm
- vague or abstract concepts
These traits can express themselves in different ways. For instance, someone with Asperger syndrome may be very funny or sarcastic themselves, but they may not always pick up on sarcasm.
People with Asperger syndrome usually have good language skills, but they may still find it hard to understand the expectations of others within conversations, perhaps repeating what the other person has just said (this is called echolalia) or talking at length about their own interests.
People with Asperger syndrome may need more time to process information, and often find it easier to understand clear, consistent language, rather than abstract turns of phrase.
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People with Asperger syndrome often have difficulty 'reading' other people - recognising or understanding others’ feelings and intentions - and expressing their own emotions. This can make it very hard for them to navigate the social world. They may:
- appear to be insensitive, even if they don't intend to be
- seek out time alone when overloaded by other people
- not seek comfort from other people
- appear to behave ‘strangely’ or in a way thought to be socially inappropriate.
This does not mean that autistic people (including those with Asperger syndrome) lack empathy or the ability to feel emotions. In many cases, they can be more empathetic or emotionally aware than non-autistic people. They may have trouble expressing their feelings in a conventional or socially appropriate way.
For these reasons, some autistic people may find it hard to form friendships. Some may want to interact with other people and make friends, but may be unsure how to go about it. Some people with Asperger syndrome may appear to be much more socially confident or adept than they really are. Many autistic adults develop more traditional skills by mimicking others around them, or by preparing what they are going to say before an event, as though learning a script. This can be effective, yet exhausting.
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The world can seem a very unpredictable and confusing place to people with Asperger syndrome, who often prefer to have a daily routine so that they know what is going to happen every day. They may want to always travel the same way to and from school or work, or eat exactly the same food for breakfast.
The use of rules can also be important. It may be difficult for someone to take a different approach to something once they have been taught the 'right' way to do it. They may not be comfortable with the idea of change, but may be able to cope better if they can prepare for changes in advance.
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Many people with Asperger syndrome have intense and highly focused interests, often from a fairly young age. These can change over time or be lifelong, and can be anything from art or music, to trains or computers. An interest may sometimes be unusual. One person loved collecting rubbish, for example. With encouragement, this particular person developed an interest in recycling and the environment.
Many channel their interest into studying, paid work, volunteering, or other meaningful careers or jobs. People with Asperger syndrome often say that the pursuit of such interests is fundamental to their wellbeing and happiness.
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Over the years, different diagnostic labels have been used, such as: autism, Autism Spectrum Disorder (ASD), Autism Spectrum Condition (ASC), classic autism, Kanner autism, pervasive developmental disorder (PDD), high-functioning autism (HFA), Asperger syndrome and Pathological Demand Avoidance (PDA). This reflects the different diagnostic manuals and tools used, and the different autism profiles presented by individuals.
Because of recent and upcoming changes to the main diagnostic manuals, 'Autism Spectrum Disorder' (ASD) is now likely to become the most commonly given diagnostic term. Asperger syndrome remains a useful profile for many diagnosticians and professionals.
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Asperger syndrome shares its name with Hans Asperger, a prominent figure in the early research into autism who worked as a paediatrician in Austria in the 20th century, including during the time of the Nazis. An eight-year study into his relationship with the Nazi regime was published in 2018, concluding that he assisted in their euthanasia programme. This provoked a big debate among autistic people and their family members, particularly those who identify with the term ‘Asperger’. We are listening closely to the response to this news so we can continue to make sure the language we use to describe autism reflects the preferences of autistic people and their families.
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