Published on 12, July, 2020
Hello:
I've been in another forum trying to help my ASD hubby make connections in a last ditch effort to save myself & my family. It's last ditch after 26 years of marriage, struggling w/cancer & two special needs young adult daughters. I am however, tenacious & my hope is that hubby will accept the support & suggestions of those in the ASD forum to enable our family to survive. I've been alone for all of those 26 years & need the voices of others w/experience of long term relationships w/a highly ASD affected other half. There is no forum for NT spouses so I've come here. Will those of you in similar positions please introduce yourselves, perhaps just to share your struggle, perhaps to share how you survive day after day?
TenaciousT said:I've been in another forum trying to help my ASD hubby make connections in a last ditch effort to save myself & my family. It's last ditch after 26 years of marriage
Hello TenaciousT what is it that you are hoping to happen to your husband to save your marriage?
More like survive in less pain & with less damage rather than save a marriage. It's not & never has been a marriage. I'm hoping that in interacting w/others on the spectrum he may finally actually accept his diagnosis 1st. He's been diagnosed twice - 10 & again 6 yrs ago. I hope that may motivate him to follow some actions & keep some standards to make daily life safer & more liveable. For example - our profoundly special needs child needs a routine to follow. Wake up, eat, meds, activity, lunch, meds, activity, etc....Hubby will not follow any routine & I am too ill to continue myself. Food is served - or was - 3x a day w/snacks & liquids between for the children & me. I'm too ill. Hubby will not do this as he eats minimally & infrequently. So should we apparently, even tho my dietary needs have increased as the cancer progresses. Just an example, but a potent one. And Hubby "works" from home so it's no time stretch. That's the kind of thing I hope, in the company of others w/ASD who have chosen to find ways to meet needs of NT partners, hubby will choose. So far, Hubby says he's gotten some such advice in the forum & that he is following it. I haven't noticed any changes, except one night he said, "thank you for staying married to me." I'm afraid it fell rather flat.
There have been slight changes over the years. He used to be very verbally aggressive & routinely made fun of people. This has diminished & he no longer directly targets me this way. See the long article I posted above (sorry - should have copied the link instead). Hubby really hasn't changed - my capacity to be made non-existent has.
Nope. I think there are aspects of his ASD, perhaps PDA, that make it difficult to comply w/requests - even those in his own best interests & that there are coping strategies to help the anxiety around this. He knows quite a few that he has always used as part of one of his interests that I believe he could try applying elsewhere. There's lateral application here that may enable him to succeed.
Absolutely I dismissed it. It was hard not to, battling the very visible nausea & pain from the cancers & his need for me to just stop being so sick so I could attend to him. I thanked him as best i could but frankly, this is how it's always been. He's quite mind blind to super, super visible events - blood, heart attacks, crying, stenches, dangerous situations - but when he needs attention he needs attention, no matter the circumstances. I've jumped up from dreadful & visible (to others) crises many times to give him support, applause, you name it. He does not do the same for me. I'm glad he was able to say it. Sorry he chose to do it while he was 100% blind to the practical help i needed at the time. It's a frustrating dilemma & much of what I'm hoping for are rote things regarding serious health & safety issues.
Song, I'm unsure if you're a NT spouse or not, but it's often gentler to not assume bad intent. Language is so blunt. For the record, I have cared for & protected my spouse for 26 years w/distinct compassion & extensive efforts to understand his anxieties & what binds him, particularly since his family abandoned him. He is not a monster, as I have often said to those who judge him negatively by his actions, but he does have ASD which seriously impacts the safety & well being of his family. I was, b4 the cancers began eating me alive, a special needs teacher w/multiple degrees including a MA, specializing in dual diagnosis adults. I do not fault my husband, my ASD daughter nor my profoundly special needs child for their conditions. What I do expect from any human being is the effort to be better, to find ways forward & to challenge themselves. To me, the difficult part is a) part of ASD can be the inability to accept diagnosis & b) resistance to change - to a point that harms self & others.
I have compassion but I'm also a suffering human being on my last legs hoping to find others in a similar position for encouragent & support.
Has he changed or has he always been like this?
So do you believe that he is just being a pain by not being able to do the routine?
TenaciousT said:one night he said, "thank you for staying married to me." I'm afraid it fell rather flat.
So the one time he managed to do something that you would recognize as making an effort which if he doesn't normally say things like that would have been huge for him, involved a huge amount of internal dialogue and plucking up courage you just dismissed it?