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 :)

[DavyCrockett]

The only thing that I find REALLY upsetting about this thread is the continual use of the word 'aspie'.

It makes me feel sick.

It's like calling someone with downs syndrome a 'downie'.

as you were.

[smee]

Davy, that's a fair point, but lots of people with Aspergers do use that term themselves, so have always thought that was an abbreviation that was okay.

SilveryP (great name btw!), it's offensive as that's a stereotype that is often levelled at people with Aspergers. Amber and Athel were pointing that out and saying it's hurtful as they feel it's so misunderstood, so simply putting another pov. Giraffe did then say it was just about her husband, but it's still an open forum and they had a right to comment. They were clearly upset by it and that seems fair enough to me.

[DavyCrockett]

I know Smee. No offence. I have started a thread in aibu and may well get shredded

[kevinsmum]

There is a very good organisation in the Edinburgh and Lothians area offering assistance and counselling for people living with adults on the AS. It goes by the name PASDA - Parents of Autism Spectrum Defined Adults but caters for everyone who has a relationship with an AS adult, be it spouse, sibling, partner or offspring. There may be similar organisations elsewhere in the country, certainly there should be!

[gussiegrips]

Smee, it's offensive as a stereotype - but, it's true that it can also, sometimes, be the experience of an NT in a relationship with an AS.

I'd validate the expression, because I identify with it, because it is, at times, my experience within my marriage.

It's upsetting to read it about someone who's got a similar wiring to you, and it's upsetting for someone with wiring like mine to live it.

Surely both upsets are equally important? Equally valid? Equally resolvable if they can be discussed and understood? Can't do that without communication.

[willyoulistentome]

"All corners and edges, with no warmth or comfort"..

Bingo - DH and DS1. DS1 diagnosed. DH not.

Everything I have read here resonates absolutely with my experience.

[smee]

Yes of course, all feelings are valid and equally important, gussie. Totally agree but Amber and Athel weren't denying them. They were questioning the language used and trying to express how talking like that about people with Aspergers on an open thread can perpetuate an offensive stereotype. Both were trying to support and help explain how it feels from the Asperger's perspective. So they were trying to help in the spirit of the thread. To be told to go away as this thread isn't for them is odd isn't it? They were clearly both hurt, unintentionally admittedly, but am still baffled by people not thinking they deserve an apology. Doesn't have to be a big deal, but it wouldn't hurt would it?!

Will go seek your thread, Davy.

[TheCrumpetQueen]

Talk about derailing.

[smee]

You're right Crumpet, I'm bailing out. Nothing wrong with this thread's original intent I can see it's useful and what Mumsnet's all about in lots of ways, but no need to offend people either. That's my only point really. Won't post again though, I promise!

[TheCrumpetQueen]

She was being offensive about her H and this was the right thread for it.

[DavyCrockett]

I don't think it was an intentional derailment afaics

if it was they'd have persisted

It does feel crappy to have a thread about 'people with such and such syndrome and how to cope with them and vent if you need to' when you are someone with that syndrome

and if you have a right to say how crap you feel living with that person, then we have a right to say how crap we feel about your thread.

that's all though,
I'm off too

[TheCrumpetQueen]

Maybe next time start another thread about how hard it is to have the condition etc.

[DavyCrockett]

I don't think that would address the issue.

[TheSilveryPussycat]

It doesn't feel crappy to me, but I can understand how others might feel that way, I think.

I'm always putting my foot in it by being too forthright/phrasing things wrong/misunderstanding, and I always try to apologise. Sometimes I explain my AS might be a factor, and that my intentions are good, but I am always upset that I have caused offence or pain.

Sorry didn't mean to add to derailment. DF has AS i'm pretty sure - he is in his 90's now. DM could have done with some understanding support, but as she doesn't believe my theory she wouldn't have accessed it even had it been available. Instead she moved out, after 44 years of marriage. They have remained friends.

[LadyInDisguise]

Well smee I got hurt by people who are on the spectrum because they were telling me that the fact I was finding it impossible to live with DH had nothing to do with the AS but everything to do with the fact he was a bastard and EA.
I never got an apology (not did my DH actually) even though I got extremely hurt by that comment. And DH isn't EA or a bastard. even though from all the comments on here you can see people do have similar experiences

I can see why you would react as if anyone and everyone is just using stereotype all the time when you hear/see/live with prejudice all the time. But maybe, maybe, not everyone does.
On the other side, the stance that some people on the spectrum have on MN where no AS can do any harm at all. There is nothing that is making an AS person difficult to live with. They just have some issues that you need make allowances for (aka noise, rest after work etc...) is annoying the hell out of me.
Because yes some people with ASD do need these allowances but not all.
For some people of the spectrum, the biggest issue IS social communication. And that makes it extremely hard for an NT to live with. Actually it makes it very hurtful sometime too and denying that fact is hurtful too.

Maybe maybe it would be nice to actually listen to people on the other side of the fence. The ones who live day in and day out, in an intimate relationship, with someone on the spectrum. If so many of us say 'Yes I can see how this is an accurate description of my partner's facial expression', then perhaps it's because it is??
Or is it that saying that living with someone with a disability (esp when you haven't sign up for it, ie you didn't know to start with) IS hard work? I am sure no one on the spectrum wants to hear that either. It doesn't make for comfortable reading and can be hurtful. Does it means we should also stop saying that?

[kaylasmum]

Hi, i've been wondering about my dp for a few years now. Don't know if its aspergers or adhd or something else, but he is definately "different".

Our relationship is at crisis point and i'm seriously thinking about leaving him. He does'nt fit with all the aspergers symptoms. He is very impulsive, has sudden and erratic mood. changes, can get very angry very quickly, prone to violent outbursts during disagreements, ie, throwing things, swearing, kicking things, and pn occasion has speeded up the car if we have am arguement whilst in the car

He hoards things, just incase they become useful one day, is very disorganised, continually loses things, which os usually blamed on me. He quite often blurts out inappropriate things, he thinks he's being amusing. He takes ages to tell a story about something thats happened that day. His speech is slow as are a lot of his movements, but if he gets angry he moves very quickly and suddenly

He has far fetched ideas about his abilities to do things, finds it hard to finish tasks quickly, like taking around half an hour to wash some dishes

He tends to start tasks and does'nt finish them, then starts another there's more but i've been rambling enough. Just hoping for some views and advice.

[gussiegrips]

I'm a bit exasperated by this.

I don't want to upset anyone with AS. I spend my whole life trying not to upset one particular person with AS.

If I understand correctly, I (as an NT partner) need to be mindful of the language that I use in order to express my emotions and perceptions with regards to living with an AS DH.

Well, that's what I do EVERY SINGLE FECKING DAY! And, sometimes, I need to let off steam! I am NT, and I'm wired that way.

My wiring is just as wonky as my DH's (he's a 36 on the Simon BC test, I'm a 4) - so, do I "have NT"?

If we assume that I do, then, I need to vent just like he needs to withdraw, I need to talk, it recharges me just like he is recharged by silence, I respond to being touched, a hug is a powerful tool for me wen I'm distressed whereas he is bemused and slightly revolted by non-sexual touch.

I'm truly sorry if this upsets anyone with AS, but, I'm deliberately putting my NT needs before anyone's AS needs on this thread. It's a way of looking after myself, so I can continue to be patient and anticipate DH's needs.

Which is more than he'll ever be able to do for me.

And, that's why threads like these can be so helpful for folk quietly losing themselves in an AS/NT relationship.

[KateSMumsnet]

Hello everyone,

Thank you to everyone who reported this thread to us, and we're sorry that people have been upset, that really isn't what Mumsnet is about. Mumsnet is a place designed to allow users to share their personal stories with the aim of pooling knowledge, support and advice.

We do think it's important that people are able to talk honestly about their emotions - and this seem to be broadly what is going on here. People are talking about their individual relationships and feelings with their individual partners, not generalising about Autism, which we would delete, for breaking our talk guidelines.

We hope you can see where we're coming from on this.

[TheCrumpetQueen]

Totally agree Kate

[TheSilveryPussycat]

And me.

[NorthernShores]

Thanks :)

[smee]

I know I said I wouldn't post again, but just wanted to thank Kate for posting. Can see it's tricky to moderate, but may I applaud your careful use of words, so 'broadly what is going on here'. Also the acknowledgment that 'people have been upset, that really isn't what Mumsnet is about'. Couldn't agree more.

[frankie4]

Kaylasmum - I don't know if that sounds like aspergers - you might want to post on another thread to get some advice.

I suspect my brother has aspergers, and it was difficult at times growing up with him as I got so little back from him. I remember my DM saying to me when he was little that she though he had aspergers. I was quite upset with her for saying that as I was so used to the way he was, that I though it was completely normal to act in that way (no emotions, not seeming to care about me, no social skills at all and ignoring my friends etc). This was 30 years ago and he has never been diagnosed. Unfortunately I am not that close to him now, but he is married with dcs and copes quite well with life, although he does tell me that he sees life as a series of tasks to get through and waits to do what he is told!

[TheCrumpetQueen]

I agree with this bit:

People are talking about their individual relationships and feelings with their individual partners, not generalising about Autism, which we would delete

And seeing as giraffes post hasn't been deleted, I guess it wasnt an attack on those with ASD :)

[notagiraffe]

Thank you Kate and Crumpet.