Many young people with autism are not diagnosed until the age of eleven years or beyond and sometimes it may not be recognised and diagnosed until adulthood. There are also many adults who have not yet been diagnosed, and are unlikely to be, or who have been given a different diagnosis.
Some people see a formal diagnosis as an unhelpful label; however, for many (including the young people on this dvd) receiving a diagnosis:
> started the process of gradually explaining the underlying reasons for their behaviour, difficulties and strengths
> helped their family and friends to understand and support them better
> helped them find the right support if they needed it at school or work
> made them aware that others have similar differences and enabled them to explore support groups
> helped them to identify their strengths and skills
> enabled a discussion of appropriate choices of further education and a career
> changed a negative self-image to a more positive one
What is it?
Autism is a lifelong condition that affects the way a person communicates and relates to people and the world around them. It is a spectrum condition, which means it affects people in many different ways and to varying degrees. The way it affects people can change over time and though many people with autism are able to lead independent lives, others may need a lifetime of support. Asperger syndrome is recognised as a form of autism.
How many people have autism?
There are over half a million people in the UK with an autism spectrum disorder - that’s around 1 in 100 - though many researchers believe this number could be higher. People with autism come from all nationalities, social backgrounds, cultures, and religions and the condition appears to be more common in males than females.
How does autism affect people?
People with autism have individual strengths and difficulties which make them the person they are. Common differences for people with autism usually include the following:
Many people with autism have special interests around which they
• a broad and deep base of knowledge
• a very good memory for related facts
• a highly developed talent
• a creative ability
Special interests may change over time but the ability to focus intensely on an area of interest has been a useful skill for many people with autism. Some develop careers out of their interests and others become famous because of them.
Stephen Wiltshire is a well-known architectural artist. He is able to produce incredibly detailed drawings of buildings from memory. Daniel Tammet is well-known for his interest in maths and languages. He was able to learn Icelandic in one week. Most special interests do not indicate ‘savant’ abilities and in fact only a small percentage of people with autism are savants. However, all special interests can help a person on the autism spectrum understand their diagnosis and offer a haven in times of stress.
Many people with autism can find communicating with other people difficult and they may need to learn how to:
• understand gestures, facial expressions and tone of voice
• start or end a conversation and choose appropriate topics to talk about
• understand jokes, metaphor and sarcasm
• understand the meaning of what is being said to them
Many people with autism can find interacting with other people difficult and they may need to learn how to:
• make and maintain friendships
• understand unwritten ‘social rules’ like not standing too close to another person
• cope in unfamiliar social situations
Many people with autism can find understanding what other people instinctively know difficult and they may need to learn how to:
• understand or interpret other peoples thoughts, feelings or actions
• imagine alternative outcomes to situations and predict what will happen next
Many people with autism can find processing sensory information difficult and this can occur in one or all of the senses (touch, taste, sight, sound or smell). Individuals may be over or under-sensitive to certain sensory stimulation such as loud noises, bright lights or strong smells.
Resources and information
The following resources have all been recommended by the young people who took part in this film project. Some of them are written by people who have autism or whose friends or family are on the autism spectrum. The National Autistic Society (NAS) has a useful list of recommended reading and links to commercial websites where reviews can be seen for the resources.
• All Cats have Asperger Syndrome
Kathy Hoopmann (2006) Jessica Kingsley Publishers ISBN-10:1843104814
• Freaks, Geeks and Asperger Syndrome
Luke Jackson (2002) Jessica Kingsley Publishers ISBN-10:1843100983
• Asperger Syndrome, the Universe and Everything
Kenneth Hall (2000) Jessica Kingsley Publishers ISBN-10:1853029300
• Aspergirls – Empowering females with Asperger Syndrome
Rudy Simone (2010) Jessica Kingsley Publishers ISBN-10:1849058261
The Autism Education Trust (AET) is dedicated to co-ordinating and improving education support for all children on the autism spectrum in England. www.autismeducationtrust.org.uk
The National Autistic Society (NAS) is a UK charity for people with autism and their families. They provide information, support and pioneering services, and campaign for a better world for people with autism. www.autism.org.uk
The DVD and accompanying information booklet were a result of collaboration between the AET, young people on the autism spectrum and professionals and practitioners in autism education. Thank you to all who participated in the filming and to all who have given their time, commitment, expertise and insight to this project. We would also like to thank:
• Oxfordshire County Council
• Autism Oxford
• Autism Family Support
• Alex Popescu – Oxford University