Families of Adults Affected
by Asperger's Syndrome
Asperger’s Syndrome Fact Sheet*
What is Asperger Syndrome?
Asperger syndrome is a fairly recently recognised disorder yet the first definition of Asperger syndrome was published over 50 years ago by Hans Asperger, a Viennese paediatrician.
Asperger syndrome shares many of the same characteristics as autism although people with Asperger syndrome do not ususally have accompanying learning disabilities. The following diagnostic criteria apply:
Difficulty with social relationships
Many people with Asperger syndrome have difficulty in understanding how others think and feel which may lead to naive, or socially inappropriate behaviour. They often try hard to be sociable and do not dislike human contact. However they still find it hard to understand nonverbal signals, including facial expressions.
Difficulty with communication
People with Asperger syndrome may speak very fluently but they may not take any notice of the reaction of people listening to them, continuing to talk about one topic regardless of the listener’s interest or lack of it. Their voice and facial expression may be flat or unusual and they may have odd gestures or eye contact. In many cases they may take jokes or expressions literally and have difficulty in understanding Sarcasm.
Lack of imagination
While they often excel at learning facts and figures people with Asperger syndrome often find it difficult to think in abstract ways. They may have restricted interests, narrow unsociable and unusual hobbies, and sometimes have an obsessive insistence on routines.
Many people with Asperger syndrome have difficulty planning and coping with change and, despite average or above average intelligence, there may be a notable lack of ‘common sense’. Everybody is different, and every person with Asperger Syndrome has’ his/her own particular difficulties and strengths, but social problems, unusual verbal and non-verbal expression and narrow interests are the common features of Asperger syndrome.
Some people with Asperger syndrome may only receive a diagnosis in adulthood, and others may remain undiagnosed. Some individuals will manage very well, while others need a lot of support.
People with Asperger syndrome seem to have difficulty understanding what those around them think and feel. Because of this, they often behave inappropriately in social situations, or do things that may appear to be unkind or callous. The wife of one man with Asperger syndrome described his condition as causing “extreme emotional indifference” which was neither voluntary nor deliberate.
What Asperger Syndrome is NOT
Many ordinary people have little eccentricities, certain obsessions, or a tendency to be shy in large social gatherings. Asperger syndrome is not simply normal eccentricity. People with Asperger syndrome usually do not want to be different, but do not know how to fit in better with those around them. The pattern of difficulties appears to start early in life, and people with Asperger syndrome have persistent social and communication problems from early childhood onwards. It is not just -a bad phase. This means that an individual with previously close good friendships and normal everyday communication is unlikely to have Asperger syndrome. Knowing about childhood adjustment is important in diagnosing Asperger syndrome, because other disorders may resemble the condition.
How Common is Asperger Syndrome?
As Asperger syndrome has only fairly recently been recognised there are not yet good figures to estimate the prevalence rate. One study suggests that as many as 3 to 7 in 1,000 people are affected. The National Autistic Society estimates that in Britain there may be 208,000 people with a diagnosis of Asperger syndrome. No doubt there are many cases which have never reached clinical attention.
What Causes Asperger Syndrome?
Asperger syndrome, like autism, appears to be caused by some biological difference in how the brain develops. In many cases this may have a genetic cause; autism and Asperger syndrome often run in the same families. Indeed, it is not unusual for parents of children with autism to feel that they recognise certain features of the disorder (e.g. social difficulties) in other relatives. If you are concerned about possible genetic risks, you should ask your GP for information on genetic counselling. At present there is no ‘cure’ for Asperger syndrome, although the help and support of family and friends can make a big difference.
Asperger Syndrome in the Family
It used to be thought that people with Asperger syndrome did not marry, because of their social difficulties. This is not true; there may be many undiagnosed individuals with Asperger syndrome who have partners and children. Some may manage marriage and family life very well, others may have great difficulties. Living with a person with Asperger syndrome can be very difficult because of the very subtle nature of the disability. There is no physical sign of the disorder, and it can be hard to explain to friends and family that the peculiar behaviour is not deliberate.
What Partners Say
The following are direct quotes taken from case histories written by partners of people with Asperger syndrome.
“All the unwritten rules of behaviour were puzzling to him… Something which you think is obvious, is not to him… lack of perception about other people’s intentions.. he does not recognise the needs of others… He did not seem able to project his mind into a hypothetical situation, or put himself in somebody else’s shoes to see what it would feel like… He cannot see that his children should be distressed because he does not visit them for weeks. He signed their birthday cards with his name until told they would prefer him to put ‘Dad’.”
“Anything he cannot face he throws away, and the consequences are -horrific… He keeps copious lists of ‘things to do, but I have to tell him what they are. If I am not there, he loses the lists… His social behaviour is appalling; falls asleep in company, makes rude noises.”
“… the paradox of an apparently kind and gentle man behaving with cold cruelty, and then being distressed and surprised by the result.”
“… he fails to recognise or understand other people’s feelings… an inability to recognise when behaviour is not appropriate.”
What Can You Do For Yourself?
The first step in coping with any disorder is understanding. This can be especially difficult if your partner has Asperger syndrome; one very successful and independent woman with Asperger syndrome describes herself like an ‘anthropologist on Mars’! It can be difficult to understand that apparently hurtful behaviour by your partner may not have been meant that way, but may be due to an inability to read your thoughts and feelings. You may need to be more frank and explicit than you would like, in telling your partner what you are thinking and feeling and what you need him/her to do in response.
Because Asperger syndrome can be seen as a disorder of insight into thoughts and feelings, it may be very difficult to engage your partner in the sorts of discussions that marriage counsellors or family therapists use. Indeed, such therapists may not have heard of Asperger syndrome and may need information from you in order to avoid misunderstandings. You may like to think about other approaches instead – perhaps it will be more useful to talk to a counsellor on your own, to have a chance to think through your feelings and decide possible coping strategies.
In brief, the following three steps have been useful for some partners:
What Can You Do For Your Partner?
As well as your partner having difficulty understanding your needs for emotional closeness and communication, it may also be hard for you to understand your partner’s needs. He or she may be interested in things that seem very boring to you, or may find apparently normal social situations very stressful. Try and remember that he/she may not be able to read all the social cues which you understand without even trying. So getting very emotional (even when you have every right!) may not be the best way to get through – while a calmer, reasoned discussion (even writing things down) may work better. Avoiding personal criticism can help; one partner suggests a more impersonal approach, e.g. instead of saying “You shouldn’t do that,” saying “People don’t do that in social settings.”
It may be hard for your partner to change from routine, and he/she may need plenty of notice when such disruptions will occur.
If your partner acknowledges his/her social difficulties, it may be useful for him/her to see someone who knows about Asperger syndrome and could offer practical advice, or social skills pointers, rather than more insight-centered ‘talking’ therapy.
*This Fact Sheet was reprinted with permission of the National Autistic Society in London England.