Support for partners of those with Asperger's Syndrome - suspected or diagnosed :)

[Joanna112]

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 :)

[Shootingatpigeons]

Two people who have a disability were hurt and now you are telling someone who points that out that they have to go away. This is Mumsnet not the playground.

[FeelingGrateful]

Very good description skull. My DH face looks more like a 'rabbit caught in the headlights of a car'.

Also agree with withdrawing from emotional moments. And I am finding that any and every moment that is even slightly emotional is taken as being anger directed towards him.
Which makes any discussion on any subject (politics or changing school for the dcs) completely impossible because as soon as you start the discussion and argue that X might not actually be white but has a shade of green to it he either gets angry and upset or he withdraws and doesn't answer.
I am not even talking about discussion where we might actually have different pov.....

The one thing that seem to work is to keep things very very light hearted, smiling (even if I am grumpy and trying to make a point for something very important).
The other thing that works is to leave experience things for himself. A bit shitty sometimes because he is going through hard times that he could have avoided but most of the time I can't get through him anyway :(

[FeelingGrateful]

Btw skull you have very well explained what I wanted to say too. Much better than me actually.
So thank you :)

[notagiraffe]

Skully, is it possible that you are not As but that members of yoru family are? I used to have lots of AS type reactions to social situations. Looking back, I think that's because I was mimicking my dad who is quite far along the spectrum, and was a very dominant/domineering force in our childhood, so I tended to copy him.

Feeling you have just really helped me. All my life, my dad has described people as being 'furious' with him. Sometimes I have been there and what he describes as 'furious' has been a polite disagreement or suggestion that runs counter to his belief. I never understood why he over reacted so much, but if he can't read the range of emotions, maybe he just sees anger if the person's face isn't showing pleasure. Maybe he really does think they were furious because he can't gauge subtler emotions in between. I'd never realised that.

This is making me realise how little I know about AS. I sort of worked out my dad has it, undiagnosed, and my lovely DH diagnosed himself when DS2 was diagnosed. It's been a shock to him and to me. He's been so lovely about it, really trying to meet me half way on things that for twenty years he's never budged on.

Today he came to look at a house with me. He knows we have to move. I've learned to start early on anything we really have to do, as it takes him 5-10 years to come round to any significant changes. He'd always just point blank refused before. Today he said, 'I won't move but I will look at the house.' That was a massive, massive step forward. I do love him!

[Weeditandreap]

Notagiraffe has absolutely nothing to apologise for.

She is asking for empathy and support on this thread and if anyone is unable or unwilling to offer that then they should leave her alone instead of accusing her of insensitivity. Take a look at yourselves.

[notagiraffe]

Mirror syndrome? Wow. It has a name? There is so much I need to find out. Not at lot is known publicly about AS really is it? Knowledge is very broad and scant. Sort of Curious Incident stereotypes but not the subtler day to day stuff. So much about my dad makes sense since I've started reading up on it.

Thank you Weed. That's so kind.

[LadyInDisguise]

We are isolated, no one validates us, we lose friends and family, and we feel like ‘hostages’ in our own homes. (FAAAS website)

From your link skull. YY to that.

[JohFlow]

There is absolutely a need for one of these sites Op. I have a aspie partner and would love a space that I could come to where I can express my frustrations and observations - at the moment we are having a bad time. I do need to vent about living with aspergers with those who also support similar partners at home. I do think there is a massive responsibility placed on partners to maintain communication, a stable homelife, pick up the pieces.... Partners do have a different perspective on their relationship to their loved aspies. Creating a safe space for discussions is a must. I am demystified that this has not been done officially earlier.

[Shamoy]

Wow a site like that would be amazing. I would definitely use it and would find it so so helpful!

[TheCrumpetQueen]

Giraffe is spot on here and has no reason to apologise for anything. This thread is clearly for people to vent out, discuss and relate to other partners of people with asd or similar.

amber no one called you dead behind the eyes, stopped being so offended. Maybe her dh is it doesn't mean all aspies are fgs.

I hope no one is put off from talking on this thread as its a great idea for support

[Shamoy]

Also wanted to add that I too think giraffe is in the right here.
I totally understand what you meant and agree that this is the ideal place to vent and hopefully receive support

[smee]

Seriously have you lot heard yourselves?? No need to apologise. Really?

Someone further up the thread said this thread is for partners, not Aspies. If that's what you want, go start a closed Facebook group. Starting a thread on Mumsnet is open to all, so we all have a right to comment. Including Amber who like others has been hurt and upset by some of the comments. Aren't you ashamed by that? If not you should be.

Amber rightly in my view pointed out that stereotyping people with Aspergers is offensive and seriously unhelpful on a thread which can be read by anyone anywhere, as it perpetuates stereotypes. She wasn't saying you shouldn't have the thread, in fact she was offering insight on the exact things the OP was posting about. Bottom line is she and others are understandably upset. Can't see why you can't see that. How sad.

[NorthernShores]

Wow nota -its my dad that I'm pretty sure is on the spectrum. I'd never heard of the mirror syndrome but it would make a lot of sense. It is genetic though isn't it too - I've wondered whether my kids will have aspects.

I'm prosopagnosic, like many on the spectrum, and can tick most of the ADD criteria. I'm super bright at processing skills, so masked a lot of the organisational issue but I really really struggle with some of the attention/focussing/routine tasks these days. However I am incredibly good at understanding others' perspectives, more of a people pleaser. I've wondered about psychology/counselling as a career in the past.

I'm an extrovert but do struggle with social situations and have a lot of anxiety/ low self esteem. A lot of that though will have come from growing up with two parents who weren't able to really understand me or my emotional needs.

Anyway - I'm finding the thread really helpful, thankyou.

[NorthernShores]

Smee, I would respectfully suggest it isn't the right thread for someone who is an Aspie themselves. It might not be the "safest" place for them as it will be a place where people are talking about the feelings and difficulties they have living with people on the spectrum.

Another thread would be lovely where people could ask for an Aspie perspective, and I know I have found Amber's insights interesting before. However a thread where people are discussing their difficult feelings isn't the place.

It's not about stereotyping of intentionally hurting people on the spectrum, but sharing feelings. NT people sometimes need to do this.

I know its different, but I have depression. I know it can be hard living with someone with depression. It wouldn't be good for me to intentionally seek out threads about how hard it is for people to live with people like me and make it my mission to correct them. Honestly. Sometimes its about keeping yourself safe, and that's a personally responsibility, not the responsibility of everyone else to stop talking about it. Its not right to shut down all discussion NT have about living with people on the spectrum. It is incredibly helpful for them.

[combi]

But Smee notagiraffe was not stereotyping Aspies, she was specifically talking about her DH. I agree with others that notagiraffe is completely in the right place to talk about all of this.

[Shamoy]

Smee, I have a child on the spectrum and also my dh is. I spend a lot of my time trying to make things easier for them and helping others see the reality rather than the stereotypes BUT it's hard work. Sometimes I get stressed, frustrated and need to let off steam. Much as I love them, it's hard work living with them and I could very much do with a place to let out those frustrations without (for once) censoring my words to avoid offence

[gussiegrips]

I'm sorry that some of you AS people who are upset by some of the language being used here. However, and, I say this really carefully and with the best of intentions - it's not about you.

It's about people like me - who need help fitting into our adopted AS world. It's hard, for someone who's brain is wired to pick up on non-verbal language, who responds to touch and intonations, to manage without that stuff. I say "hard", I mean "can feel like he's intentionally hurting me".

Living with someone who appears to be dead behind the eyes when life's shit happens is hard. And, look at this thread - there are loads of NTs nodding quietly at that image! It's a common thing in these, most intimate relationships. And, it's just, sometimes, fecking hard!

Yes, it's not my DH's fault, yes, he feels it too, yes, he's overwhelmed, yes he doesn't mean it, yes, yes, yes.

But, what about me, and my NT needs? I matter. We matter. That's what this thread is for.

[TheSilveryPussycat]

How is it stereotyping to report that, to you, your DH looked 'dead behind the eyes'? Anyone could describe their experience of anyone that way.

I believe I have AS (awaiting outcome of assessment). I hate routine and love change!

[smee]

Yes Northern, combo, Shamoy you're right, but this is an open forum and if you see a thread about Aspergers and partners and you happen to be on the spectrum yourself, you're bound to be curious and have a read.

Nobody would deny being in a relationship with someone with Aspergers isn't tricky at times. Yes of course you all deserves support and a place to to discuss that and share ways of coping. That's why Mumsnet's a great place and so supportive. Amber and Athel weren't denying that, just quietly pointing out how hard it is to hear those stereotypes and how it really feels from the partner's perspective. They have as much right to post as any of you on the OP's thread. Honestly it's so obvious that Giraffe and others are lovely caring partners and clearly what they said wasn't intended to hurt, but my point is they did. Surely that deserves an apology rather than a get lost this thread isn't for you!