Issues for partners of people with Asperger syndrome

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. Some Relate Centres - those in Derby and Coventry - now have counsellors trained in understanding Asperger syndrome. If you live elsewhere in the UK, you may want to check whether this expertise is available locally before making an appointment with Relate.

There are a small number of support groups for partners and our Autism Helpline can search for you, to see if there any locally. If the Helpline is not aware of local support groups in your area, then there are a number of websites that are useful for partners. The benefit in talking to someone who understands should not be under-estimated.

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 behaviour 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 realisation of what is not going to be. For some, there will be a feeling of disappointment, loss and unfulfilled potential. Talking to a counsellor 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 recognising 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 counselling.

Children

For many people, the realisation 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 your local Citizens Advice Bureau can often give help. Advice from a legal professional is exactly that - it does not mean you have to leave, it can just help eliminate the unknown. Counselling can be helpful to enable you come to a decision; your local Relate Centre will be listed in Yellow Pages.

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

Information for partners Find out what autism spectrum disorders are and discover what you can do for yourself and your partner. Partners of people with Asperger syndrome: a guide An overview of Asperger syndrome for partners, along with lists of useful contacts. Partners - some frequently asked questions Our Autism Helpline is often contacted by partners of people with autism spectrum disorders. Sometimes their partner is diagnosed and sometimes they are not. They are seeking information and support, and we hope this section will be of some help. Asperger syndrome: broaching the subject You may believe that someone you know has undiagnosed Asperger syndrome. How do you broach the subject with them? Benefits and community care Information about benefits you may be entitled to claim and details of our Welfare Rights Service, and Community Care Service, which can tell you more about benefits or help from social servcies. Real life stories from partners Real-life stories from partners of people with an autistic spectrum disorder Useful websites for partners of people with an ASD Links to websites of relevance to people with a partner with an autism spectrum disorder. Helpline email service [Reply given] Our online advice and information service for people with autism and Asperger syndrome, parents, professionals, researchers, etc. We aim to give a response within 14 working days.