I hope those with partners or spouses in this forum can offer some suggestions. I'm the long time NT spouse of an ASD hubby, mother to a teen daughter on the spectrum as well as a teen daughter with profound, complex developmental & medical needs. I was a special needs teacher specializing in dual diagnosis teens & adults for well over 20 years, supporting the family as hubby has always been under-self-employed, until ill health took me out & isolated me at home. Daughter is higher functioning than hubby. On another thread, I posted something like this, below & I wonder if there are those on the spectrum here &/or their NT partners who could offer suggestions?
"I'm an NT spouse & mother - the only NT in the house & this explanation of preferring no behaviour change or to "fit in" is often given to me by my ASD spouse & young adult daughter. It's become a very old & destructive perspective in the household, requiring me to live entirely in an ASD world with zero accommodation or attempts at perspective change to benefit my needs as an NT person. I understand the unique gifts my spouse & daughter have accrued & developed in light of their autism, but not the 100% refusal to adapt anything for another's (& ultimately their own) benefit. I must constantly adapt & change to accommodate their needs & those of others. If you were asked to change & adapt for the benefit of another, would you attempt to do so? What would convince you to attempt such changes; what words from an NT would convince you to change your perspective &/or behaviours in select situations? In our home, the ASD diagnosis is not used by those diagnosed as a tool to help themselves, rather as a weapon & I'd like to find ways to encourage voluntary change. Suggestions?" Any help out there? Thanks.
Hello TenaceouseT thank you for directing me here after I read your extremely kind words and suggestions to a mother struggling to cope with two young boys,one who has autism.Thank you for helping her.
Being only recently aware (six months)of such a thing as autism I am self diagnosed myself, first I thought ASD then after talking to many in here the penny suddenly dropped and I realised I was Aspergers, I didn’t like that! I had only seen a small amount about Aspergers man,
I got angry ,I was very down,,, I researched it all, I kept seeing horrible things said about this man. It took people in here to show me that not all Aspergers men are all the same, not two people on here are exactly the same, we are all a mixture of many variables, our upbringing can effect us all. Our schooling, our long term relationships etc.
One thing that was apparent to me was that I had huge feelings of empathy.
something aspie man is reported to not have much awareness of.
Finding out his traits made me stop and think about my own relationship,
my wife is NT like you. I realised how much she has to do to accomadate my ways, I felt so angry with myself. I could suddenly see all the times she coped with our two daughters acting as a go between when I was having a tissie or not getting my own way.
I honestly never realised I was like that! I swear I never actually stopped to think just how hard I could be to just keep happy.
I had specific needs or wants, simple things like having my own cutlery, my own oval plate,getting stroppy if my stuff/clutter had been tidied and sorted. My impatience if having to walk endlessly around shops. Moaning about just about everything.
Damned hard work when everything was cobbled together. Our girls weren’t on the spectrum but my oldest was diagnosed with dyslexia when joining college, my wife did most of the hard work helping her achieve more than expected of her abilities, I did help as I have certain dyslexic traits, but my wife has worked so hard.
so i now have an understanding of my ways, I could see my bad points, As such I stop and think more now, I take into consideration what effect it will have on her, I learnt by seeing my bad points.
I take it both your daughter and husband are both formerly Diagnosed with ASD?
Do either of them understand how difficult it is For You? It seems not, your husband needs a wake up call, he isn’t deliberately being uncaring,,,but he must somehow be made aware of your needs. He and your daughter need to understand just how much you do for them,,often without any thanks or praise.
Would they entertain reading up on how people such as you are effected?
we do enjoy researching things! Maybe ask them what they think about researching the subject of NT living with ND?
If you can find a way of shifting their focus towards research which will lead to evidence regarding the social interaction between ND and ND or NT and NT. then follow up with adding ND to NT it would be relevant.
Basically lead them to a place they can discover how they impact so much on your ability to keep going.
So I can only suggest that he needs to understand you can not keep going without some let up. He has to accept that not everything in the world revolves around him.
He has to see and understand as I do, it was a shock when I sat back and thought about it, I don’t like what I found, A grown man acting like a spoilt child.
I am trying to make amends and take a lot more responsibility for my actions.
Take care and sorry I haven’t any magic wand, and please accept an aspie hug() from an Aspergers man who saw the error of his ways,
Lonewarrior - you are a kind man & I appreciate that greatly. You know what tho? You beat yourself up too much. As a NT spouse I've not been angry at my spouse or eldest daughter exactly - not since their diagnosis 7-8 years ago anyway - & am every day ready & willing to forgive & start over. I just hope for some effort on their parts & don't see it. Too - I don't quite understand the reference to Asperger's as opposed to High Functioning or any other differentiation. Here in Canada it's identified as Autism Spectrum Disorder only - no more distinctions - & after years of both teaching & living w/those on the spectrum I believe there's truth in the saying - if you've met one person on the spectrum, you've met one person on the spectrum. Give yourself a break - clearly I'm not the easiest person to live with or my ASD spouse would find it more acceptable to trust my words than he does. Your insight does you credit & I've no doubt that goes a looonnnggg way with your wife. Especially if you write to her as kindly as you have here.
So, let me focus my question & seek your help. My hubby of 25 yrs is 62, diagnosed 8 years ago, then a 2nd time 3 years ago. I am 52. While he says he "accepts" his diagnosis & has skimmed a very few of the resources I've provided, his behaviour says otherwise. I believe him to be a man in a great deal of pain & anxiety most of the time, unable to identify or experience emotion at all. He will not participate in anything that would help him identify, name & allow to leak out any frank emotion - he's highly passive-aggressive rather than violent, I believe as a result of that involuntary repression. I think he experiences a great deal of compassion at some level but it causes him nothing but extreme pain & there's zero expression of it. The knowledge that he himself causes a great deal of pain, is I think, even worse for him, so when I try to effect change - saying for example, "when you do not respond to me verbally, my feelings are hurt & it causes me frustration." - I think this knowledge hurts him, causes him to retreat further & often engage in further hurtful behaviour as a kind of "cover up" - usually implying or saying something along the lines of - you don't feel hurt, no reasonable person would be hurt, you're an idiot if you're hurt. I don't think he's trying to be as mean as that sounds - he IS a good man - but it is a defense mechanism he uses liberally. I have to get around it somehow. I think he's fully cognizant of how his behaviour hurts others & it hurts him so much he just shuts down &/or speaks defensively.
What do you think? Might there be a way to get past his pain & shut down, to persuade him we're actually on the same side? Is there a better way to be specific about what exact behaviour I'm asking him to modify without triggering him?
So the next question is more pragmatic & really more important now. We're in a bad place right now between my deteriorating health & some dreadful decisions hubby made - not intentionally but with catastrophic consequences. Lack of insight paired with being taken advantage of by the unscrupulous & his 100% inability to share any info. After years of doing all the care taking, I need hubby to take on some tasks I can no longer manage in order to save our family. I've tried giving him lists - which he loses, describing the consequences of inaction, giving one task daily & reminding him - but am getting no where. I'm sensitive to wanting to accord him the dignity he deserves but these things are urgent & if not done will damage all of us significantly. Do I have to reduce this to "I'm the boss & you're the stubborn employee" or might there be other ways? How does one move an individual mired so deeply in tunnel vision & inertia? Is it possible do you think? A thought process at work that another person on the spectrum might recognize but I cannot?
I suspect some of what seems like stubbornness has grown out of his family - completely estranged - as well. It's clear the ASD is multi-generational - his grandfather & mother were very obviously on the spectrum, his brother, his wife & their children are. His uncles, aunts, their spouses & their children are too. Hubby's generation & their offspring have chosen formal diagnosis & the culture is grim. There are very few NTs sprinkled in there & hubby is estranged largely because a) he married a NT & b) unlike virtually every other ASD relative, he's a very quiet artist w/out a business or self-preservation bone in his body. Despite deploring his families behaviours, which amount to cruelty even to him, he still has this long-held, knee jerk belief that autism is correct & superior whilst NTs are "off". He doesn't think about it, but growing up in a nearly entirely ASD family - successful if not kind - I suspect it's a deeply held belief.
So, even if nobody has answers, have I described the difficulties clearly? Does any of it sound familiar to anybody else?
And yes, my 19 yr old is also on the spectrum, but higher functioning than her dad & with some coping skills for her anxiety & expression. She's in university - home for the holidays just now. Our youngest, 17 yr old daughter is not ASD, but was born w/a rare brain disorder that amongst other things means she's developmentally about 4 yrs old.
Thanks so much Lonewarrior. You really have made me feel some better with your encouragement & openness about your journey. Hugs right back & greetings to your wife who surely recognizes your efforts to honour her. :-)
Hi TenaciousT (great handle!)
I'm a 58-year-old male who was only diagnosed in 2015. All of my life, though, I knew there was something 'different' with me as I always struggled with things that others seemed to take for granted: friendships, relationships, routine changes... and cohabitation arrangements of any kind. Apart from when I was living at home, and during six months earlier this year when I was giving full-time nursing care to my mother in her home, I've only cohabited twice in my adult life. The first occasion was when I was married. I loved my ex-wife very much. But I couldn't make it work - or it wouldn't work, whichever. A large part of the reason, I now realise looking back, is that it threw me out of my natural psychological space. I was used to having a certain order to things. And that order all broke down, and I couldn't cope with it. Silly things, maybe... but I would do all of the cleaning, and it had to be done all at once on a Friday evening to leave the weekend free (a routine I still keep to now). I could only settle once it was done. Because I did it all, I was conscious more of keeping the place clean and neat. I would always, for instance, wipe my feet when I came in and take my shoes off before stepping over the carpet. My ex-wife never would - even if her shoes were muddy and wet. She almost did it deliberately, I think, in the end. She'd just say 'Let it dry and clean it up then', which I couldn't do. I couldn't leave it. I tried reasoning by saying 'It wouldn't need doing at all if you just took your shoes off like I do.' But no. There were lots of other little niggles like this. I did try very hard to compromise, I truly did. But in the end, the sum total of lots of little things drove me to distraction. I also am a person who needs his own space a lot, away from anyone. My ex-wife respected this, to a degree - but then would often barge into the room I used on the pretext of getting something. At the end of a couple of years together, I began to drink to cope with the anxieties all of this threw up. By 4 years, it was all coming to pieces. We finally divorced after 5 years. My own perceived and admitted failure to work at it was a source of great grief for me for a long time afterwards. Again, I say - I really did work at compromising. The same in my second cohabitation relationship - except here, things were different in that my ex-partner insisted that I adapt to her needs much more. She refused to do any chores at all - including shopping or laundry - because she found them "too exhausting". She had BPD, but I actually believe CFS may have been at the root of things. She refused to go out. I could only talk to her when she wanted to talk. Physical relations could only be when she wanted them, and in her preferred way - and they had to be over very quickly. You could say, perhaps, that this was giving me a taste of my own medicine! But again, with her, I compromised... until all I was doing was compromising. Once again, I hit the bottle to cope. Once again, it all blew up.
I now live alone out of choice. In some ways, I think I just don't want to give anyone else the burden of having to put up with me - so at least I have that insight. I know how hard it can be. Like living with someone with a serious illness or physical disability, adaptations need to be made - and they can be taxing in even the most loving relationship.
Sorry... I'm not able to really offer any solutions. Just my own perspective on it, from the ND side. It's difficult, and I don't envy anyone who has to deal with it. I hope there isn't genuine unkindness or stubbornness behind things in your situation, though you know it better than I do. I think I know what you mean about how it seems to be being used as a weapon. But that then means that you're an enemy in the camp. Is that how you feel about it?
I hope others can offer some broader insights to help you.
Martian Tom - I really appreciate your candid description of how it has been to be in a relationship from your perspective. Particularly that you loved your partner, it simply didn't work anyway & you have regrets. It definitely helps to think that my hubby may experience regrets he's unable to express. Clearly you understand how i feel about being the one having to make the compromises but unlike me, you got out. Regrets or no, it sounds like you made the best decision. Everyone deserves their own soul & it sounds like you saved yours. Thanks for sharing that.
I smiled reading about some of the niggling issues you mention. Unlike the majority of folks i know on the spectrum, it's my spouse & daughter whose difficulties w/executive function mean chaos reigns in our environment! I'm the one setting up the shoe rack for muddy shoes whilst they're tramping thru the house never noticing or caring. I find these aspects unusual & really irritating. Frankly, after 25 years of marriage I'm tired of removing dirty socks from the stove top & explaining personal hygiene over & over. I thoroughly understand how that kind of irritation can really add up. I'm fortunate in that I've been able to kind of pare down some expectations - although reading your post & pondering makes me understand that I haven't really pared down enough. You're right that the environmental/cleanliness things are a big part of daily frustrations that leave me unable to better cope with bigger issues. So you've given me a step to take I didn't have before; perhaps there's an individual in these forums whose executive function issues lead to a chaotic environment. Perhaps hearing about that perspective will help me find ways to help hubby, daughter & me all meet an agreed upon standard for clean & tidy & stick to it. I've tried b4 with what I know as a teacher - lists, signs, assigned chores, visual cues, etc...but none have ever worked. Your words encourage me to find out why they didn't work & to recognize how much of an impact these environmental things are having on everything else. Thank you Tom!
As for stubbornness or cruelty - Hubby's personality is very gentle, but I think the autism affects him to such a degree that he operates instinctively on all levels. He's unable to evaluate behaviour or words either b4 or after so there's never a bad intention. I suspect that regardless of ASD, he's just a stubborn fellow like many people are, but there's an inability to find or judge any flexibility because of the ASD. Again, not intentional, just extremely unaware. Daughter on the other hand, is higher functioning & despite regrets later, is often a right bully within the family. I love her profoundly, but am grateful that she's away at uni, home only for holidays, living on her own & liking it.
Thank you VERY MUCH Tom.
I'm glad if my words have offered you some insights.
I also regret that, although my mother was the centre of my world - the only person who truly understood me, and the only one I could go to for support and love when the rest of the world was rejecting me - I could be an insufferable bully with her when I was growing up. Even in adult life. She was the only person I used to really argue with - often reducing her to tears. I poured all of this out to a therapist I saw a few years ago (the one who first identified evidence of ASC in me), and she said it was probably because our relationship was based on unconditional love. I argued and fought with her because I knew I could, and it wouldn't affect the love she had for me - and vice-versa. Even when I was nursing her 24/7 during her final illness, we would have words - and it always left me feeling horrible afterwards. Why do I continue to hurt her in this way? But it was a difficult dynamic. I was sharing a confined space with her, sleeping on a camp bed, and had to be vigilant with her throughout the day - monitoring her medication, her diet, her moods. I was constantly on edge. And I was watching her progressively deteriorate. I've written a book about that time, which is as much a confessional as it is a testament to such a unique loving relationship - and such a remarkable person, which is what she was. I have huge regrets about the way I treated her sometimes - only moderately assuaged by the fact that I gave her all I could to make her final days as comfortable as possible.
These relationships are a minefield. All human relationships are, really. My last partner - the one with BPD - understood my condition. But only up to a point. The eighteen months we were together were a very fraught time. We had some ferocious rows, and I was verbally abusive. I hugely regret this, too - but I was at my wit's end. When it all fell apart, she refused to accept any explanation of my behaviour that was based around its being in response to her behaviour. But, in large part, it was. I simply could not cope with this person taking control of my life, which she did. In hindsight, and with things I've found out since, I realise she was narcissistic. She was used to having her own way, and would go to any lengths to maintain that way.
But then... I'm like that, too. Just for a different reason.