Asperger syndrome: what it means to us

Asperger syndrome: what it means to us

What is Asperger syndrome?

You may have already read the National Autistic Society leaflet What is Asperger syndrome? We in the Contact social group in London felt that in some ways this didn’t reflect our experiences in the group as adults, and so in this leaflet we have described how Asperger syndrome affects us day to day, and what has helped us.

We have described our experiences, but of course everyone with Asperger syndrome is an individual, and will have different gifts and difficulties to different extents.

Asperger syndrome is a disability that is part of the autistic spectrum. It is a diagnosis given to people who are often considered to be at the ‘higher’ end of the spectrum.

Other diagnoses on the spectrum include autism and high functioning autism. Asperger syndrome and high functioning autism are often used interchangeably. Asperger syndrome is classed as a pervasive developmental disorder (PDD): this means that it affects every part of our life.

John’s story

When people first meet John, they may not realise he has any difficulties. John desperately wanted to fit in at school, and felt frustrated that he couldn’t participate. He was never picked for school teams, and didn’t know how to join in when in the playground. However, he was very good at maths and computing, and found he could entertain his peers by his excellent memory for jokes. At 18 he received a diagnosis of Asperger syndrome. He was later diagnosed with dyspraxia, and also suffers from depression.

As he moved on to adulthood, although he had good grades at GCSE and A level, he found it difficult to work at college, until he was given some specialist support. He found it hard to get a job until he was given specialist support in interview techniques, and in organising his working day, and found that this opened up far more opportunities for him. His employers find him hard working and very efficient, as he has a great eye for detail.

Jane’s story

Jane did not have many friends at school, and found she was puzzled by the fantasy games in the playground. Her classmates sometimes told her she was rude, because she would comment on things that other people thought but didn’t say. As an adult she found it difficult to go out and socialise informally, but enjoyed chess and met her husband at a chess club. Her husband and children understood that she liked to keep to a routine, and that she became upset if things changed suddenly, so they adapted their domestic life to suit her.

She got a job as an accountant and work went well until the organisation restructured, and there were lots of staff changes. Jane became increasingly anxious, and she went to her doctor. She referred Jane on to a psychiatrist, who eventually diagnosed her as having Asperger syndrome.

What problems do people with Asperger syndrome have?

Asperger syndrome is a subtle condition – an ‘invisible’ one and as a result sometimes people misunderstand us. As it is subtle, it is also hard to diagnose. It is often described as a ‘triad of impairments’ – a set of three difficulties:

• difficulty in social relationships
• difficulty in communication
• difficulty in imagination.

Asperger syndrome may often include having special interests, and becoming anxious if a routine is broken.

Below are our experiences of these three difficulties.

Difficulty in social relationships

• “I would love to have a party, but I haven’t got a clue how to organise one.”
• “I find it harder than other people to make friends.”
• “Socialising doesn’t come naturally – we have to learn it.”
• “We sometimes misunderstand situations and signals.”
• “It is like being behind an invisible wall.”
• “It is like being a wasp in a jam jar.”
• “I learnt about relationships by watching movies. I know this view is unrealistic.”
• “I have difficulty picking up social cues, and difficulty in knowing what to do when I get things wrong.”
• “I get frustrated at my inability to participate.”
• “We sometimes find it harder to guess someone’s age or status by just looking at them.”
• “Sometimes we find it hard to keep a conversation going.”
• “We sometimes find it easier to get on with people in other countries.”

Difficulty in communication

• “Sometimes we are slow at understanding what the other person has said.”
• “We might find it hard to understand expressions like ‘he can’t put two and two together’.”
• “We tend to take things literally.”
• “Sometimes we might talk non-stop about something and not notice the other person is not interested.”
• “We find it hard to take turns.”
• “Sometimes we find it hard to make ourselves understood.”
• “If you have Asperger syndrome, understanding conversation is like trying to understand a foreign language.”
• “Sometimes we find it hard or even painful to make eye contact, and people can misunderstand us, thinking we are shifty or dishonest.”

Difficulty in imagination

• “The area of difficulty many of us have is in imagining the feelings of others.”
• “As children we sometimes found it difficult to join in imaginative stories in the playground, or jokes. This is something some of us have learnt as we grew older.”
• “We have trouble working out what other people know. We have more difficulty guessing what other people are thinking.”
• “We find it hard to understand plays and stories.”
• “Sometimes we find it hard to identify with other people’s emotions.”
• “The subtleties of emotion and facial expression are very hard for us to understand – if someone is smiling broadly, it is clear, but less obvious emotions are more difficult.”

“People should remember that it is not only people with Asperger syndrome who struggle with communication and social relationships. Everyone finds these things hard to some extent, and in some situations, but people with Asperger syndrome tend to find them more difficult, just as they do when their life situation is particularly difficult.”

Special interests

• “We are more likely to have special interests which rule our lives.”
• “I have difficulty switching off from my special interest when I need to.”
• “Sometimes special interests can be developed, so we could work at or study our favourite interests.”
• “Others don’t always seem to share my interest in flags.”
• “I really enjoy spending time looking at electricity pylons and their construction.”

Routines

• “We might find it more difficult to cope with a change in routine than the general population. It can make going on holiday more difficult, or getting to a new job on time.”
• “If I have warning, I don’t mind having a change, but it needs to be planned in advance and not sprung on me.”

Causes

There are many theories about what causes Asperger syndrome, such as environmental factors, brain damage, a difficult birth or illness as a baby. No one is completely sure of the cause at the moment. Research is continuing, but it is thought that people’s genetic makeup has a large part to play.

Prevalence

Asperger syndrome occurs across cultural and language barriers. It affects more men than women. People may find it harder to see the social difficulties that women with Asperger syndrome experience.

“People with Asperger syndrome are more likely than the general population to have accompanying problems such as dyslexia, dyspraxia, digestive problems and mental health problems.”

What are we good at?

Having Asperger syndrome can be worrying and upsetting, but there are things that we are good at that the general population find difficult. Many of us are intelligent and have high IQ levels. Below are some of the things people in our group are good at.

“I have an excellent memory for facts and figures – for example, car number plates and timetables. I never have to write down telephone numbers. I have an excellent memory for jokes, anecdotes and even whole movie scripts.”

“I can remember in great detail conversations I had ten years ago. (This can lead to disagreement when the other person doesn’t remember saying something!)”

“I have a very strong sense of justice.”

“I am good at computer packages.”

“I’m good at foreign languages.”

What helps us?

• “People should take time to understand people with Asperger syndrome.”
• “ We need support to learn – for example at college an outreach worker showed me how to do certain things.”
• “We need practice to learn things.”
• “We need support to learn domestic things, and how to work out emotions and friendships.”
• “People can help us by communicating clearly – by explaining tasks well so they are easy to understand, and giving support to-do some tasks.”
• “People need support to find employment. Support to find a job and support while at work has opened up my life.”
• “We also need support when we are self employed.”
• “People should explain things clearly and avoid sarcasm. People should try to be consistent and remember what they told us.”
• “It would help if people were accepting and tolerant of the condition, and to our sometimes eccentric behaviour.”
• “It would help if people realised that we might not initiate social interaction, but will ‘join in’ on our own terms with assistance.”
• “We need the rules making clear. We need telling what to do and what not to do in social situations.”
• “It is helpful if you are clear and direct in a warm way.”
• “Concentrate on our good qualities and talents.”

Recommended reading

Tony Attwood Asperger’s Syndrome a guide for parents and professionals Jessica Kingsley Publishers 1998*

Gunilla Gerland A Real Person: life on the outside Souvenir Press 2003*

Temple Grandin Thinking in Pictures Vintage Books 1996*

Temple Grandin and Margaret Scariano Emergence Labelled Autistic Warner Books 1986*

Martine Ives What is Asperger Syndrome and how will it affect me? The National Autistic Society 2001*

Luke Jackson Freaks, Geeks and Asperger Syndrome Jessica Kingsley Publishers 2002*

Wendy Lawson Life Behind Glass Jessica Kingsley Publishers 2000*

Clare Sainsbury Martian in the Playground Lucky Duck Publishing Ltd 2000*

Gisela and Christopher Slater-Walker An Asperger Marriage Jessica Kingsley Publishers 2002*

Digby Tantam and Sue Prestwood A Mind of One’s Own The National Autistic Society 1999*

Donna Williams Nobody Nowhere Jessica Kingsley Publishers 1992*

A useful reference work for use on computer – a CD ROM or DVD ROM developed by the University of Cambridge: Mind Reading: the interactive guide to emotions Human Emotions 2002*

* Available from NAS Publications. To find out how to order:

Tel: 020 7903 3595

Email: [email protected]

For a full list of publications and to order on line see the NAS website: www.autism.org.uk

The following contact details may be helpful:

The National Autistic Society’s Helpline provides an information service to those affected by autism or Asperger syndrome in the UK. You can, for example, ask for an information pack, details of the nearest support group if there is one in your area, or a fact sheet on a specific subject. Callers requiring more in-depth assistance will be connected to a Helpline worker.

Autism Helpline 0845 070 4004 Mon – Fri 10.00am-4.00pm

The Helpline can also be contacted by letter or email at:

Autism Helpline

393 City Road

London EC1V 1NG

Fax: 020 7833 9666

Email: [email protected]

A newsletter written by people with Asperger syndrome for people with Asperger syndrome:

Asperger United

c/o The National Autistic Society

393 City Road

London EC1V 1NG

Tel.: 020 7903 3541

Email: [email protected]

Prospects Employment Consultancy – National Autistic Society supported employment service for adults with Asperger syndrome:

Prospects London

Studio 8

The Ivories

6-8 Northampton Street

London N1 2HY

Tel: 020 7704 7450

Fax: 020 7359 9440

Email: [email protected]

Prospects Glasgow

1st Floor

Central Chambers

109 Hope Street

Glasgow G2 6LL

Tel: 0141 248 1725

Fax: 0141 221 8118

Email: [email protected]

Prospects Manchester

Anglo House

Chapel Road

Manchester M22 4JN

Tel: 0161 998 0577

Fax: 0161 945 3038

Email: [email protected]

Prospects Sheffield

Sheffield Hallam University

School of Education

35 Broomgrove Road

Sheffield S10 2NA

Tel: 0114 225 5695

Fax: 0114 225 5696

Email: Prospects-Sheffield.org.uk

For students over the age of 16 with any disability: Skill (National Bureau for Students with Disabilities)

Chapter House

18 Crucifix Lane

London SE1

Tel: 020 7450 0620

Fax: 020 7450 0650

Helpline: 0800 328 5050

Email: [email protected]

Website: www.skill.org.uk

Autism Helpline 0870 600 8585

Mon – Fri 10.00am-4.00pm

The Helpline can also be contacted by

contact details may be helpful:

The National Autistic Society’s Helpline provides an information service to those

Autism Helpline 0870 600 8585