What's it like to have Autism or Asperger Syndrome?

Autism: a spectrum of conditions

Before finding out what it's like to have an autism spectrum disorder (ASD), it's important to understand that all these terms carry a very wide variety of meanings, so it's hard to generalise about the experience of living with it day to day.  This page is intended as a rough guide for 'neurotypicals' (people who don't have autism or Asperger syndrome).

Autism is called a 'spectrum' disorder.  This means an individual may present a wide range of difficulties from mild to acute.  Furthermore, these difficulties can very widely from one individual to another.  Difficulties may also vary for an individual person on a daily basis so that they may be more or less sensitive to particular things on different days.

Asperger syndrome (AS) is a form of autism used to describe people at the higher functioning end of the spectrum.  People with AS do not usually have the accompanying learning disabilities associated with autism and their language skills are highly developed.  However, they still have difficulty understanding language and communication.  At the lower functioning end of the spectrum is Kanner syndrome, sometimes referred to as 'classic autism'.

So what's it like to have an ASD?
Autism is a lifelong developmental disability that affects social and communication skills. People with an ASD may find it difficult to understand how the world and people around them operate and also find it hard to interact. In particular, people with an ASD may have trouble learning, understanding and interpreting the unwritten rules of social interaction and relationships that most people without an ASD can take for granted.

Reality to an autistic person is a confusing mass of events, people,
places, sounds and sights. There seem to be no clear boundaries, order or meaning to anything. A large part of my life is spent just trying to work out the pattern behind everything. (Quote from a person with Autism)

Social interaction and communication are key aspects of our daily lives and they determine our ability to fit in and function in society.

Try to imagine if you suddenly woke up in a foreign country where you did not speak the language and had no way of effectively communicating with the people around you. On top of this, imagine how it would be if the people around you had a different set of social rules (such as the way they greet one another when meeting), which you could not work out.

How would you feel? How would you react? How would you cope?

To varying degrees, this is how people with an ASD experience their surroundings every day and their initial responses are often to find unique ways of understanding and coping with the situations in which they find
themselves. This is why they may behave and act in ways that may appear odd or even mischievous, and these reactions may effectively isolate the individual from the world even more.

Autism is not a physical disability, so the condition can be invisible to the rest of the world. It is easy to tell that a person in a wheelchair has a physical disability that may require support and understanding, whereas people with an autism spectrum disorder look just like anybody without a disability. This means it can be extremely difficult to raise awareness and foster an understanding of the condition.

In particular, children with an ASD are often mistakenly described as being naughty and other people assume that the parents are simply not controlling their child properly.

Approximately 70% of all people with autism (excluding other autism spectrum disorders such as Asperger syndrome) may also have accompanying learning difficulties (Fombonne, 2005). People with Asperger syndrome commonly have average or above average intelligence (Wing, 1996). Whatever their level of ability, people with an ASD share a common difficulty in making sense of the world.

 

If you require further information please contact the NAS Autism Helpline
Tel: 0845 070 4004
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© The National Autistic Society 2003