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

There seems to be significant resentment here towards the experiences of some of the regular posters, we’ve seen it in previous threads and no doubt will see it again. The intense irony that the behaviour so many of us live with seems to draw out is only compounded when the irony itself is missed – double irony!

For what it’s worth my experiences seem typical – DW undiagnosed demand avoidant and in denial, DS1 diagnosed and thriving, DS2 NT and thriving. I have read books, been on courses and as someone who has lived with an undiagnosed partner for twenty years and I hope successfully raised an ASC child, I feel I am as well placed to comment on ASC as any other lay NT, and maybe as well or better than many professionals and those with AS as well.

To be honest though whether Hedgehog and co think I or anyone else is qualified doesn’t really matter, what does matter is that for me to realise DW is ASC means I can change my behaviour and expectations to give her the environment she needs. Whether those changes will give me what I need remains to be seen – for some here it is unsustainable, for others like myself I truly hope the understanding I have is enough.

Hang on in there y’all.

Blimey.

Just popping by to see how everyone is.

Flowers to all

typical – DW undiagnosed demand avoidant and in denial

Typical of what? None of these things are typical. Demand avoidance is described by the NAS as relatively uncommon. Most adults embrace their diagnosis, they find this new understanding empowering.

But of course, suggestion of having a disability can be presented and perceived as very disempowering.

I can completely understand why partners could reject the discussion about AS if it is presented within the frame of Faaas narrative.

Many people with disability don't identify being disabled because they consider themselves perfectly able, equal to others, their perspective being valid. There is some discriminatory baggage attached to the perception of disability that could influence how people react to it.

In the social model of disability, disabled people, the symptoms, are not the problem to be fixed, it is for society to remove barriers so people with ASC could participate on equal footing.

The Equality Act definition of disability means doing things differently, not being 'delayed' or 'incapable'.

But this is not how AS is portrayed in the links on the OP

Can we get back to the people who need support within this group?

whether Hedgehog and co think ... doesn’t really matter

This is exactly the message of Faaas

Referring to the group of autistic people like this is really degrading and claims that their perspective is invalid, denying them agency

In the context of the title and OP of this thread, the perspective of autistic people seem to not matter to the people who are supposed to be their romantic partners and co-parents of their children

This is not advice and support for those married to a partner with Aspergers

@daftasabroom yes definitely demand avoidance here too. It helped me understand a lot. DS has it in the extreme, and it has made a lot of sense to DPs behaviour towards me. There is no official diagnosis for demand avoidance so no one has been offficially diagnosed with this in my family, neither is anyone else with it as there is no standardised method of testing. I’m not even su

DP has recognized his own ASD traits - I am of the view that it is up to him whether he gets diagnosed or not. I think it’s a bit of a strange grey area, the autistic traits / aspergers, I think there’s more similarities with people with strong traits but not hitting the threshold, and those with ‘aspergers’ or mild/level 1 ASD or whatever - than there are with people who have more severe ASD. And before anyone jumps on definitions, as we could be here all night! I just mean there’s a huge difference between being able to function and not being able to function. Associated issues of anxiety are real, however being able to dress yourself and talk is a big difference. In term of what support they need etc. But that’s a whole other debate.

What I’m saying is, I do think it would help is DP recognized his traits and we got supported professionally as a couple in this way. I don’t think a diagnosis is needed. Although it might help to just acknowledge. Our couple counseling was useless for example, there was a huge amount of time with the therapist not getting what was in front of her.

It’s the same with DS, until I educated myself about the demand avoidance professionals were getting it badly wrong. The were not even able to work with him. It was serious. He was going towards never leaving the house, or attending school. Now I’ve been able to get advice, to name clearly the problems, to share these groups, i now have good strategies to help.

Which is what this group is intended for. There are not professionals out there helping us on the whole. DP acknowledges he has traits, (very strong ones and by checklists is high risk), but has now buried these under the carpet as he doesn’t want to deal with it. Why? Because he’s demand avoidant. Vicious circle really.

Moffa, Daftasabroom
Would you talk about your autistic DS on this thread in the same way you talk about your DW?
Does your DS fit any of those descriptions in that lovely table in the OP?
www.theneurotypical.com/effects-asd-neuro.html
I’ll quote a few descriptions from it, given as ‘advice and support’:

“Autism Spectrum Disorder … results from neurological factors that delay or prevent the developmental maturity of many or sometimes nearly all functional brain systems.
Failure to reach certain significant mature milestones can have an aberrant effect on a person’s ability to function successfully in life and relationships.
WHERE LEVELS OF DEVELOPMENT MAY ARREST IN ADULTS WITH ASD
EFFECTS ON ADULTS WITH ASD AS A RESULT OF NOT REACHING MATURE MILESTONES:

-"Interest only in one's own needs; OCD; narcissism"

-"POSSIBLE psychopathic, sociopathic or criminal behaviour, black and white attitude to life; extreme zeal for perceived righteous pursuits or power; “god-like”; authoritarian, opportunistic"

-"Awkwardness, lack of caring in family and social situations; poor parenting"

-"Lack of attachment to people"
-"Attitude that other people are dispensable"

-"Desire for isolation or over socialisation"
-"Interactions limited to intellectual responses unless prompted"
-"Cold and unloving behaviour, lack of compassion"

-"Lack of sense of self in relation to others"

-"Inability to reflect on own life"

None of the above 'effects' are actually recognised as inherent traits of ASC

And of course apparently only autistic people have:
-"ADHD, ADD, OCD, tantrums; manipulates and controls others by fear, anger, anxiety, verbal/physical violence; possible depressive symptoms"

In contrast, “MATURE DEVELOPMENTAL MILESTONES REACHED BY NEUROTYPICAL ADULTS” are:
“Social conscience, sense of “fair play” and natural justice”
“Ability to gain wisdom from experiences”
-"Mature ability to control thoughts, emotions, words, actions according to circumstances. "
this specific point is in contrast to the point above about ADHD and depression, which apparently only happens with autism !

The point on 'Lack of sense of self' ‘Inability to reflect on own life’ is in fact a point that people on the spectrum don’t have / should not have agency, isn’t it?

What do you draw from this advice?

Treading on eggshells here. Reminds me of home.

PinaColada,

Is your DS getting SEN support at school? Does he have an EHCP?
He should have one if he is at the point of school refusal.
Of course it is tough to get all the right SEN support and get the right professionals involved. NAS, SOSSEN, IPSEA provide good support for that.

You are not getting Faaas SALVE groups and advice for your DS, are you?

And as far as who changes. Then there’s also quite a big difference between say getting a ramp for a wheelchair, or another human being being expected to alter their behaviour for another’s. No one should be regularly shouted at for example, because their partner is not coping, because of whatever cause.

I do change how I am around DS. He needs a parent to do this and DP does not. However the goal with DS is that he changes. That he becomes less demand avoidant. I change in order to facilitate his growth. I am happy to do this as I am his carer. If he doesn’t change much he will always need a carer. Which is fair enough and what he deserves. As an example, he will only work a certain route. He needs to be utterly in control. If I say the sky is blue on the way he screams as he perceives this as me putting my own demands on his view of the world. I do not start by just expecting him to be able to walk a different route. I realize his is hugely difficult for him. So I work on ways to reduce his anxiety, his fears, I prepare him, I gently, very gradually, stretch his ability to cope with a tiny route change. I don’t talk at all. In order to give him space without making statements which distress him. So that perhaps one day he will be able to walk to a shop that he wants to go to, and converse with another, instead of being trapped by himself.

However I am not DPs carer. I do not have to accomodate him more, than he does me. It’s a compromise, a relationship of equals. It should take in individual differences sure, however there can’t be one person worn down to enable anothers poor coping of whatever it is, ASD or whatever else. Example, DP only likes food a certain way, and from certain places. I am happy to oblige him as it’s not that important to me. DP however has to control all aspects of food. From where it is placed in the fridge, to how it’s cooked, to what is bought. He needs to control even my food and will comment. I, inevitably, have my own views and there has to be some element of me being able to choose my own. I now do the shopping, however DP took months to accept this, even though I buy everything that he needs, cook it the way he likes. I still put it in tn fridge the same way. I find I can’t even suggest going out for a meal as DP sees that as a huge demand, even if it’s to somewhere he likes to go, and gets very stressed to the point of getting very cross with me.

I need it recognised that the above behaviour impacts hugely on our relationship. And it’s not me making demands about food! So sorry I can’t just be going, we have a mutual problem, takes two. DP has got stressed and angry with me on numerous occasions! I have felt crap. Recognizing that this behaviour is very like the pattern in DS of demand avoidance / control is useful. Otherwise, as many of posters have described, we get bogged down in it, never moving. DP will hone down on the detail of why he doesn’t want to go out to dinner with me for example and blame me for being too needy. He once said why did I expect to ever go out with him, as he sees me all the time at home. he would get me to justify over and again why I felt the need to buy a certain food item or to ask him out for dinner. A bit like justifying ourselves here...

I find it useful to talk about this. In this forum. Apologies for how long it is though!

@gauda DS is in a special unit and doing well, but only because I shouted from the rooftops how he needs to be accommodated, and worked with, and did most of this myself. He also comes on trips with me to new places and loves it. He’s come a long way.

I guess it’s helpful to remind ourselves of the ground rules as it were, me also!
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.)

Do we all still agree with these? Do they need adding to? Or do you we think they are fine but that the long posts of people telling posters we are wrong are not respecting these?

Pina, I can see your fingers are trembling typing. This is very upsetting subject, it touches to the most sensitive nerve. Please don't get me wrong, I understand. It is extremely draining and tough and eventually you wear thin. I had my moments.

Of course ASC in the family does affect your family life and the relationship and absolutely, spouses like us, families have additional needs due to ASC that need to be recognised and supported. Absolutely!

It is the flip side of the strain that autistic people leave all their lives. My DD is in continuous anxiety and distress. Communication is two-sided, both sides suffer from misunderstanding and stress. The double empathy model and the therapy managing arousal and staying connected helped me to conceptualise and trouble shoot communication hick ups in my family to resolve them lovingly.

But it does not mean Faaas is the answer. And the way they talk about ASC is going to be detrimental to attitudes to our children, if it goes unopposed.

As 'ridiculous' as it may sound, NHS and NAS are the answers imo.

I don't know much about PDA, it is a particularly difficult one, I know.
There is carer need assessment that potentially could help you coping with DS and DP, respite breaks, residential special schools, social care for disabled adults. MH services and social services could help your DP to deal with his PDA. I am sure you know. NHS is the way to go with your DP really imo. I am trying to say that at the point of desperation there are structures that could help, so you could cope and take care of yourself as well. They are not perfect, as always.

And of course you don't have to stay in a relationship with a person you don't want to be intimate with/ in relationship with anymore. And of course this is not simple, like all relationship breakdowns, disability or not .

But of course relationship is mutual trust, mutual respect. Faaas does not stand for that.

Pina, excellent suggestion to agree ground principles.

As I was trying to say, there are real problems with this thread and ould be good to discuss and agree some patrameters BEAR WITH ME

@gauda I mean this respectfully, however I do think you tend to hog the thread and are telling every poster they are wrong to even post. You don’t agree with the thread full stop. So I don’t think a huge list of disability discrimination points which all add up to wanting this thread shut down are useful. This just is going to kill the thread.

I do think this thread is useful, needed, respectful to those with ASD (and fair enough if a thread is reported for not) and a place for partners to be heard. I do agree we need to be mindful, but I really do need a safe place to discuss the dynamics of my relationship and to be clear that most of my issues are because DP has ASD traits.

There are many 'ranting' and ex-bashing threads on MN which are fine, precisely because the ex- and cheating husbands are not identified as individuals and are not a protected characteristic.

This thread is not harmless ex-bashing. It identifies explicitly a disability, a protected characteristic and therefore should comply with the parameters of equality laws, in relation to speech as well.

It should weight interests of people with disabilities for dignity and freedom from discrimination vs the needs of partners for chat and support, but also appropriate non misleading advice, vs the impact on ableist prejudices in society. Ultimately it should be free from ableism.

One cannot 'safely' own the territory of partners with ASC, there are human rights parameters attached.

Safe from what?

There could not be safe space for discrimination and disability hate speech

Gauda this thread is not the place for you.

What is the problem?

1. Ableist analysis of relationship and victimisation of autistic partners in relationship is taking hold unopposed under the banner of support and advice for partners of autistic people as a group
2. Dangerous pseudoscience and myth are channelled creating prejudice for autistic people
3. The advice and support resources are those from an ASD hate groups. Faaas and other links promote incitement to discriminate, spread malicious stereotypes and normalise hate speech.
4. There is a confusion about legitimacy of ableist analysis and discourse when expressed in a personal context
5. The tone and content on occasion are potentially examples of disability hate speech which is being normalised. Although a small number of posts are deleted on request, plenty remain unchallenged and the expressions are validated by the group and reiterated repeatedly.
6. There is an apparent validation of the idea of a ‘safe space’ for ableist discrimination and hate in relationships
7. There is an apparent validation of no-platforming, segregation of expression for autistic people
8. Moderations guidelines and practices are ineffective due to grey area of discrimination in relationship and disability hate speech when it's presented as personal experience
9. Views of posters with nicknames explicitly identifying them as autistic appear to be treated less favourably (even compared to other pro-autistic posters)
10. MN does not seem to respond to the substance of reasoned concerns raised in reports of the thread about incitement to discriminate, maliceous stereotypes, effect on autistic people and seem to favour concerns of ‘support’ for NT partners instead, perhaps being taken by the Faaas hate narrative of 'abuse'. The ideology did its damage

I feel I'm being "talked at" even in here, now :(

Gauda why can't you just leave those who find this thread supportive, to get on with it and gain some support and comfort in sharing their experiences, rather than have you continually posting to tell us we are all wrong?

You obviously find the threads very existance upsetting.

This thread isn’t about the labels & terminology. It’s about the real life experiences of NT spouses looking for help and support from each other.

I find it very helpful. It was such a relief to know I wasn’t going mad and why I was so, so sad. It has been a relief to know that much of H’s behaviour stems from HFA which helps me understand better what has happened within MY relationship.

I really don’t need lecturing. I can research things relevant to MY experiences by myself.

Degrading and demeaning autistic people, the narrative of autistic 'guilt' for everything that went wrong for spouses is not an experience, it is an attitude, a behaviour.

It is not real life, it is the narrative.

Racism initially was based on self evident experience of seeing black people being black

Misogyny is based on self evident experience that women are women

Perhaps you should go on the SN support threads @gauda, and say to parents or families who are sometimes at the end of their tether with ASD kids, that they are wrong to say anything negative and to shut those threads down?

Have you been on SEN board Pina?

Can't you see the striking contrast?

Threads there are very cherishing and respectful, there is love in every line of every post, as it should be. There is real knowledge and advice, based on equality there.

Thread like this would not be tolerated there and links to Faaas table are revolting. I don't understand how anyone could read through faaas stuff without throwing up, having children on the spectrum

Yes I have. And no I don’t see the difference. In fact in order to support my DS with ASD I need to be able to function, which means sorting out my relationship with as much support as I can.

But then I could get caught with you arguing all day... and really if you are that incensed you need to argue it out with MN. If they think it’s discminatory they will pull it. I would like to carry on getting some support in a space where I feel there is useful and constructive sharing.