Married to someone with Asperger's? Support group here! (Thread 3)

[ChangerOfNameAspieThread]

This thread is for partners seeking to understand the dynamics of their relationship with someone with ASD. It is a support thread, and a safe space to have a bit of a rant. Avoid sweeping generalisations if possible, try and keep it specific to you and your partner.
(ASD partners welcome to lurk or pop in, but please don't argue with other posters and tell them they are wrong.)

Some resources from the threads so far:
www.theneurotypical.com/effects-on-differing-nd-levels.html
www.maxineaston.co.uk/cassandra/
I've probably missed some, but will try to gather them later and put in a comment for the next thread!

Previous threads:
1st thread: www.mumsnet.com/Talk/relationships/3281058-Is-anyone-married-to-someone-with-Aspergers
2nd thread: www.mumsnet.com/Talk/relationships/3325419-married-to-someone-with-asperger-s-support-group-here

For a safe space for useful and constructive sharing e should define some parameters

What I hope could be done

Redefine the narrative, reject the discriminatory framework of analysis from Faaas
• Recognise that a thread explicitly identifying relationships with people with a protected characteristic, such as ASC is not just a relationship thread, it should weight interests of people with disabilities for dignity and freedom from discrimination vs the needs of partners for ‘venting’, support, but also appropriate advice, vs the impact on ableist prejudices in society. Ultimately it should be free from ableism.
• Reject the principle that personal relationship could be a ‘safe’ place for ableist discrimination and hate speech, including on social media like MN
• Reject the idea of segregation of NT vs ASC, the idea that autistic people should not be heard in discussion about relationships ( ‘we need a NT’ perspective’ ‘partners with ASD please remain silent’)
• The discussion, the support and advice should take place within the framework of non discriminatory, respectful and inclusive analysis and discourse.
• MN could consider inviting reputable speakers (Network autism?) able to discuss and frame the issues about NT/ASC relationships in a non-ableist way, and redress the damage done by the FAAAS hate narrative so far. There should be autistic speakers too.

Engage and agree voluntarily the new parameters of acceptable discourse
• Interested posters on the thread together with MN, the autistic community and NAS should consider issues of discrimination in personal relationships and develop new talk guidelines and framework for analysing personal relationships and describing, talking about personal experiences with disabled autistic people in a non discriminatory, respectful and inclusive way. Laudable resources should be identified. Ableist resources from hate organisations should not be used.
• It would be good if posters on the thread would voluntarily agree to develop in partnership with the autistic community a new OP and a new title for the support thread
• Once this is started the three previous threads should be deleted as they are infused with FAAAS narrative of hate and incitement to discrimination

Review moderation
• Based on the principle that relationship and they way it is talked about is not a safe space for ableism
• Following from above a thread like this should be moderated as a disability related thread rather than as a relationship thread where all sorts of expressions and emotions are ‘valid’ and ‘safe space’ exist for hate speech and incitement to discriminate.
• At least one moderator on relationship board should be on the spectrum and online
• The moderations guidelines should be the ones agreed with the autistic community, it shouldn’t be a matter for moderators who do not sufficiently understand the issues surrounding disability and autism
• The title and the OP of a thread for partners of people with ASD as a group should not be controlled by posters who repeatedly express ASD hate and promote ableist narrative

Send that to MN then. They will have to consider that for the SN boards too.

@Gauda as far I can tell the only person to have mentioned or linked the FAAAS is you.

@Daft

you are incorrect. It has been mentioned by QueenieInFrance, Changer ofNameAspieThread (in her key references post) and by Moffa twice.

So FAAAS is being touted as a good place to go by the OP and others.

QueenieInFrance Mon 21-Jan-19 07:53:12
www.faaas.org/otrscp.html

Article about Ongoing Traumatic Relationship Syndrome.
What I found interesting is that the symptoms associated with it match so well how I have been feeling, including the fact that such a profound stress can have some very physical impact. I know that for me, thatbatress is at the root of my ME for example (something j’y ME consultant also acknowledged btw)

Interesting too is the idea that the partner with AS is likely to deny they are hurting people by their behaviours.

ChangerOfNameAspieThread Fri 25-Jan-19 22:09:10
Hi everyone. I've finally put together the list of resources. Some have been repeated, or different pages from the same sites mentioned a few times. In these cases I've tried to find the most salient page from each site to give a general overview and provide useful, varied info. The rest I hope is self-explanatory!

RESOURCES FOR NT PARTNERS OF ASPERGERS SPOUSES GATHERED FROM THE THREADS SO FAR
General sites and specific pages (no particular order)

• Tony Attwod ; www.tonyattwood.com.au
• Maxine Easton www.maxineaston.co.uk
• Different Together: website and forum for partners of people with -Aspergers different-together.co.uk
• Families of Adults affected by Aspergers Syndrome www.faaas.org
• Kathy J. Marshack www.kmarshack.com/Asperger-and-Marriage.html
• Survey of Relationship Experiences of Neurotypicals in, or who have been in, an intimate adult relationship with someone who has, or is suspected of having, Asperger’s/High functioning autism. www.faaas.org/assets/survey-4-for-neurotypicals-results.pdf
• Effects of Differing Neuro/Developmental Levels on Neurotypical/Autism Spectrum Adult Relationships theneurotypical.com/effects-on-differing-nd-levels.html
• List of articles in English from Asperger Partner (includes child-rearing when a parent has ASD) www.aspergerpartner.com/articles-in-english

Moffa Wed 06-Feb-19 07:16:43
Hi everyone,

Hope you’re all okay.

I couldn’t sleep last night but I have made a decision.

I am going to divorce him on the grounds of domestic abuse. I read an article (linked to faaas website) about domestic abuse and suddenly realised I have endured years of it.

Moffa Sat 09-Feb-19 07:11:28
Hi Yenzen,

Could you direct them to the faaas website? (Families of Adults Affected By Aspergers Syndrome) Or print off any relevant pages?

I don’t know what faas is. (Don’t want to know tbh)

@daft what I can say is I do identify with demand avoidance. And understanding it is massively helpful. If there are specific things you feel are like this about your DP it can be approached differently. Worth a try! If I place few or no demands, but then present a demand as something that would massively help me, but that DP is under no obligation to do, he responds much better.

For context:

ChangerOfNameAspieThread:

This thread is for partners seeking to understand the dynamics of their relationship with someone with ASD. It is a support thread, and a safe space to have a bit of a rant

@Hedgehog, I stand corrected, but you only needed the first paragraph. You don't need to quote every instance and choke the thread!

FAAAS looked pretty awful to me, I've never seen it before.

It's a shame so much here is being decontextualised, conflated and misrepresented to suit a personal narrative.

Briefly sticking my head in to say that I have diagnosed autism, and am fully supportive of the existence of this thread so women in relationships with an ASD partner can support each other.

It’s not a place for me, and I suggest it’s not a place for some of the posters above who seem very, very keen to be offended. I get it, hyperfocus happens - but can we please leave these women alone? They’re asking for one thread. There’s the whole rest of MN out there to be a disability advocate on.

Daft I agree.

@tirisfalpumpkin
Thank you!

tirisfalpumpkin thank you so much

@tirisfalpumpkin
Briefly sticking my head in to say that I have diagnosed autism, and am fully supportive of the existence of this thread so women in relationships with an ASD partner can support each other.

It’s not a place for me, and I suggest it’s not a place for some of the posters above who seem very, very keen to be offended. I get it, hyperfocus happens - but can we please leave these women alone? They’re asking for one thread. There’s the whole rest of MN out there to be a disability advocate on.

But what if the "support" they're getting isn't helpful, accurate or fair? What if someone gets advice and subsequently acts in a way that actively damages an ASD person who doesn't have the same level of support? God knows NHS provisions for ASD support are pitiful - do we just shut up and let the NT's convince each other we're damaged, emotionally crippled, unfeeling monsters? How does that help?

To paraphrase your comment - they're NT's - they've got the whole rest of society to function in. We're just asking not to be shut down in this one thread that specifically talks about the difficulty of living with us - yet according to the first post, we don't get a say to challenge any of this?

So start your own support thread! No one is stopping you.

Just as a reminder - this was MN's post on the issue:

@ClaraMumsnet
Hello all. While it's okay to share personal experiences, and to seek support here, can we please just ask that you're mindful about making what could be interpreted as generalisations? There are many parents on Mumsnet who are autistic, and, as you have pointed out, may be reading these threads. Please do bear our Talk Guidelines in mind when posting.

^These guidelines don't appear to have been followed.

@Moffa
Gauda this thread is not the place for you.

@tirisfalpumpkin
Briefly sticking my head in to say that I have diagnosed autism, and am fully supportive of the existence of this thread...
It’s not a place for me, and I suggest it’s not a place for some of the posters above who seem very, very keen to be offended.

I think it's been made painfully clear by posters here that this thread is "not a place for people with ASD". There's a vast amount of generalisation happening and when someone who actually has ASD posts to challenge misconceptions, they're told to butt out.

Yet somehow that's not discrimination?

@moffa
Sadly this thread too reminds me of "home" and sadly I wont be posting, or looking here again as the tone of specific posters is quite triggering for me, especially in the unrelentingness of them.

The posters here have helped me immensely through one of the hardest times of my life (they were in all different situations to my own but always offered calm, balanced understanding and views) and I'd like to say thank you to them for that.

I wish you all the very best.

I've just had a relapse. I've coped well with an AS H for many a month but a couple of minor things over the weekend have knocked me back into the place I've been many times before. The feeling of being sick to the stomach, of feeling alone and unloved and ignored.
The thing he did was say that he wouldn't need feeding yesterday as he was going walking and would be having lunch with people he was going on a walking holiday with. I said I didn't know you were going away, he said well it's in the diary. It's not that he is going on holiday, it's that he thinks putting a note in the diary is the way to communicate with his wife of 30 years. Then our DD emailed him and asked him about internships at the company he works for. He said he didn't know what he could do she can look on the website. True but wouldn't it be nice to have a dad who could walk along to 'Bob' in HR and have a word with him about possible vacancies.
I know this must seem trivial but I just hate the way it makes me feel.

@daft

All you needed to do was CTRL-F and find the quotes yourself before accusing Gauda.

amocrazy I know, completely in agreement. I’ve felt stressed just reading this thread today. I don’t understand why we can’t have one space to open up without fear of judgement. to you.

onlytheyoungones so sorry to read your post. I can totally relate to what happened, particularly with your daughter.

And Ditchy Gauda is NT

@Amicrazyornot
Sadly this thread too reminds me of "home" and sadly I wont be posting, or looking here again as the tone of specific posters is quite triggering for me, especially in the unrelentingness of them.

That's a coincidence - it reminds me of my childhood home too. You know, with constant comments like:
"can't you just pretend to be similar and get along with the normal people?"

"don't make a fuss"

"why can't you just fit in?"

"everyone loves hugs, what's wrong with you?"

"I just don't understand you. Why are you so cold?"

"Stop being stupid and calm down, you're embarrassing me"

"Having ASD doesn't stop you expressing your emotions in a normal healthy way"

Yep, just like home.

Ditch, Gauda said she was NT further back in the thread. With children (and DH?) with ASC.

I’m at loss with the faaas website.
If it has been linked and is actually a website that is disability, why not just explaining and say8ng so rathervthan being agressive, having a rant and suing that as a sing that clearly everyone on this thread is disability??
The one article linked to that didn’t read as disability to me (it was all about the partner, not the person with AS).
How is anyone who Knows little on AS (as we keep being reminded of) also expected to know all the different position and wether a website is disability or not? From one article???

@DitchyMcAbandonpants
What you are describing is EXACTELY what has been a huge connondrum for me.

In the face of H behaviour, i can only do two things

• Assume there is nothing wrong with him and therefore expect him to react like any other NT person. And ask all the questions you are asking. Why is HUGEKY unfair and very hard in him, as you have experienced.
• Assume he is in the spectrum and NOT ask any of those questions. To try and understand, get how the AS is affecting him (as it is affecting people in different ways). But I would diagnosing him WHICH I SHOUODNT DO AS I AM NOT AN EXPERT ON AUTISM

Which takes me to the following comments.
You can’t have a go at people on this thread for assuming a diagnosis (NOT making the diagnosis as it has been implied) and at the same time say that people shouod know and remember those differences.
You also need to remember that whatever is said in here will be different to what we do and react with your DH. People might be ranting in here, telling other posters about how hurt they are that DH did xxx. It doesn’t mean they wouod tell them that.
Eg I couod be saying how hard I am finding that H never gives me a cuddle and never does small talk. But in RL, I wouod never dare telling him that, nor wouod I expect it.
It wouodnt stop me from needing it (just like H needs his silence at the end of the day) nor would it stop the fact it is a hurtful situation for me (even if it is nit for him)
Please note the hurtful situation rather than him being hurtful btw.

The one thing you can NOT do is to tell peole to not talk about their hurt because it makes you uncomfortable/you find it hurtful.
That’s also why the OP was saying that maybe people on the spectrum shouldn’t be in this thread. Because yes it will be hurtful to hear that doing xxx is hurting someone else, even though you can’t change that. But just as much as you can’t chnage who you are, you can’t change the hurt posters in this thread are felling either.

@ditchy, I'm sorry you had to put up with that, it was very unfair. The great thing about DS diagnosis is that we were able to access a huge amount of support. (pre austerity). We had five very very difficult years, but because we worked hard to change our attitudes and expectations things pretty cool at the minute.

Maybe if your parents had had a similar level of support and approach they would have behaved differently.