Aspergers in the Family

It used to be thought that individuals with Aspergers did not marry because of their social difficulties. This is not true! There may be many undiagnosed people with Aspergers who have spouses and kids. Some may manage marriage and family life very well, others may have great difficulties. Living with an individual with Aspergers 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 behavior is not deliberate.

What Spouses Say—

The following are direct quotes taken from case histories written by spouses of individuals with Aspergers:

• "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 behavior is appalling; falls asleep in company, makes rude noises."

• "All the unwritten rules of behavior 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 recognize 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 kids 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'."

• "... 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 recognize or understand other people's feelings... an inability to recognise when behavior is not appropriate."

What Can You Do For Yourself?

The first step in coping with any disorder is educating yourself about it. This can be especially difficult if your spouse has Aspergers. One very successful man with Aspergers describes himself like an 'anthropologist on Mars'! It can be difficult to understand that apparently hurtful behavior by your husband 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 spouse what you are thinking and feeling and what you need him/her to do in response.

Because Aspergers can be seen as a disorder of insight into thoughts and feelings, it may be very difficult to engage your spouse in the sorts of discussions that marriage counselors or family therapists use. Indeed, such therapists may not have heard of Aspergers 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 counselor 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 spouses:

• Consider whether diagnosis would help
• Contact with others in the same position, for understanding listening, support and advice
• Counseling for yourself and your family

What Can You Do For Your Spouse?

As well as your spouse having difficulty understanding your needs for emotional closeness and communication, it may also be hard for you to understand your spouse'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 spouse 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 spouse to change from routine, and he/she may need plenty of notice when such disruptions will occur.

If your spouse acknowledges his/her social difficulties, it may be useful for him/her to see someone who knows about Aspergers and could offer practical advice, or social skills pointers, rather than more insight-centered 'talking' therapy.

Aspergers and Genetics—

Some research shows that there are strikingly similar features in first or second degree relatives on either side of the family, or the family history includes "eccentric" individuals who have a mild expression of Aspergers. There are also some families with a history of children with Aspergers and classic Autism.

Should a relative have had similar characteristics when younger, they have a unique advantage in helping the child in that they know what he/she is going through. There is no formal identification of the precise means of transmission if the cause is genetic, but we do have some ideas as to which chromosomes may be involved. As our knowledge of genetics improves, we may soon be able to predict the recurrence rate for individual families.

But it may be a mistake to dwell exclusively on the genetics of Aspergers. There must be other factors involved. Experts suspect such variables as prenatal positioning in the womb, trauma experienced at birth, or random variation in the process of brain development may also play a role.

Even if you could identify the genes involved in Aspergers, it's not clear what you would do about them. It's not as if they are lethal genetic defects, like the ones that cause Huntington's disease or cystic fibrosis.

Living With Aspergers: Help for Couples