PARTNERS OF THOSE ON THE AUTISM SPECTRUM

It used to be thought that people with Asperger's 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 Aspergers syndrome can be very difficult because of the very subtle nature of this syndrome. There is no physical signs from just looking at someone, and it can be hard to explain to friends and family that peculiar behavior 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 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 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 behavior 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 recognize or understand other people's feelings ... an inability to recognize when behavior 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 behavior 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 counselors 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 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 partners:

i) Contact with others in the same position, for understanding listening, support and advice

ii) Counseling for yourself and your family

iii) Consider whether diagnosis would help.

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, eg 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.

Responsibility

Most partners often feel very responsible for their husband/wife. It is important to acknowledge that there is choice connected to that responsibility. You are not responsible. If you choose to take on responsibility for others, decide on how much and when you feel it is appropriate.

Look after yourself

Often partners spend so much time looking after others, that their own needs are not acknowledged by themselves or others. Decide what you want and how you can get it. For example, where can you go for conversation, support etc. Take time out to pamper yourself - whatever helps to relieve your stress.

Talking to someone who understands

Asperger syndrome is a complex condition, and it is important that support is informed and understanding of these complexities. There are partner groups in some countries and various areas, and these can be very supportive. The benefit in talking to someone who understands should not be under-estimated. Your nearest autism or Asperger Association can tell you whether there is a partner group in your area.

Acceptance

Acknowledging that your partner will "not get better", or be transformed into the person you thought they were, can sometimes help, although this is also difficult. Certain behavior can be modified or changed, which can make daily life less stressful for both you and your partner. For example, routines and agreed timetables can help, as can looking at how you talk and what language is used.

With acceptance of the condition comes a range of other issues, such as grief and the realization of what is not going to be. For some, there will be a feeling of disappointment, loss and unfulfilled potential. Talking to a counselor can really help - they can listen and enable you to explore the issues, emotions and choices.

Isolation

You are not alone, although it may often feel as though this is the case. Professionals are getting better at recognizing the condition and developing appropriate service - although this will often seem too slow for many needing help now. Use what help is available, through a partner support group and/or Counseling

Children

For many people, the realization that their partner has Asperger syndrome, often comes about when a child receives a diagnosis of being on the autism spectrum. For some, this time will be like that of a bereavement, and the grief felt for your child will be compounded with guilt and a lack of support from your partner. Taking time to talk through positive strategies with others can be a positive process. The feelings of not being able to change things can be very frustrating. It is helpful to look objectively and decide what can change and what will remain constant.

Look at your domestic routine

Try and see what structures may help and what may hinder. For example it may be important to agree how meal times will be conducted (eg sitting down together at the table). To be rigid on all times (eg we will eat at 6pm), may be more difficult if you cannot always meet the schedule - dinner at 6.15pm may cause stress to both of you.

Be clear and explicit about what you want

Do not leave ambiguity in your statements, and do not assume your wishes/ emotions are acknowledged and understood. For example it may not be enough to remind your partner that you have family over for a meal. You may need to go through the evening in detail, explaining what you want him to do, and not do, eg greet everyone once, and do not go to bed before the guests leave.

Ending the relationship

This is always an option. It is important to get legal advice so that you understand the financial and practical implications of separation. Many solicitors will offer a free 1/2 hour initial appointment, and free legal advice is available in many countries, although this may depend on your income level. Advice from a legal professional is exactly that - advice. It does not mean you have to leave, it can just help eliminate the unknown. Counseling can be helpful to enable you come to a decision.

[These notes were compiled by trained counselors with expertise in supporting couples where one partner has Asperger syndrome. ]

This information is reproduced with the kind permission of The National Autistic Society who have many useful fact sheets on their site. Copyright is retained by www.autism.org.uk and their permission must be obtained to reproduce their material.

Click here to read personal stories by adults with Asperger's syndrome.

Click here to go to the home page to view the full range of autism fact sheets at www.autism-help.org