Support for partners of those with Asperger's Syndrome

(4 Posts)
Joanna112 Mon 28-Oct-13 15:52:12

Hi. After many, many years of mutual misunderstandings and miscommunication and near divorce, my husband was diagnosed early this year with Asperger's Syndrome.

In the interim years leading up to diagnosis we (well … I) almost gave up several times. Talking to close friends didn't work. Traditional marriage guidance counselling didn't work. The never-ending circle of endless arguments around the same issues led me to lose my self-confidence, I suffered from depression and severe loneliness. I turned to the internet to try and find others in the same situation, someone to understand and talk to.

Whilst I did manage to find some discussion threads on a few different websites, they were hard to navigate back to and many were very negative. We were put on a waiting list for diagnosis in Exeter. After six months we were told the waiting list was TWO YEARS! I decided that, particularly in the early stages of suspecting your partner has AS and in the lead up to diagnosis as well as afterwards, the greatest support I could have would be connecting with others in the same situation. There seems to be plenty of support for people on the autism spectrum (which is GREAT!) but little to none for their partners.

I believe a website that is JUST for NT partners is what is needed.

I recently received some money which will enable me to set up just such a website. I want it to provide discussion groups, support networks, recommended reading, personal testimonies, a 'what works' and 'what doesn't' page (I have a few!), names of AS specific counsellors.

I'd really appreciate your thoughts on the site, whether you think there is a need for it, what should be on it etc. It's early days in the design but it would be great to have input from people who might use it once it's up and running.

Thanks so much smile

thekitchenfairy Fri 01-Nov-13 10:03:45

Hi .joanna
This sounds like a great idea. I am local ed for Cornwall and happy to post links etc for you when your site is up and running.

Joanna112 Fri 01-Nov-13 13:09:14

Thanks so much kitchen fairy smile That would be great!

babouches Fri 07-Feb-14 22:46:25

Hello Joanna, I am so desperate for an online site for partners of those with Aspergers to be set up. I think it's really needed. Please do set one up! My husband has Aspergers (not formally diagnosed), and 3 months ago left me and our young children after 7 years. He has shown not a glimmer of loss, or of missing me or our home, which I find so upsetting. I suppose his now-blatant disinterest in me just confirms the suspicions I had held for many years, that he didn't actually love me at all. Good to clear it all up, I guess.

He has not even told me if he has left our marriage, or just our house. (He announced he wanted to live in his own space at the same time as we both came to the conclusion he had Aspergers.) He shows no recognition of how upset I am. He seems to think that nothing bad has happened, and that life on his own is great. I am having to guess if he is still my husband or not. I guess not...

The reactions from my family and my in-laws are piling hot coals on top of pre-existing pain for me, eg "If you're an adult, just sit down and talk it through together. Sort yourselves out". I find they minimalise my loss, and are quick to patronise me. Many people just don't understand what it is like to try to communicate with, and be a companion to, a spouse with Aspergers. My self-esteem and sense of balance are at times in a precarious state,though I have some great individual friends who will stand by me through the grim times and the good.

A dedicated, active web site would provide rare support for us women (and men?) who are otherwise dotted about the country in relative isolation. Sharing our similar experiences would take the edge off the fairly freaky things I feel are going on in my life right now. Please let me know when the site might be launched.. Good luck with that. Great idea.

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