Some months ago the members of this forum gave me a huge boost in understanding & coping with my ASD hubby of 26 yrs. Our life is complicated w/a profoundly special needs teen, a 20 yr old w/ASD, artist hubby well-known but perennially unable to support us, & my very long fight w/*** & endocrine cancers that I am losing. Frequently hubby embroils us in chaos & trouble due to inability to comprehend circumstances (words, explanations, implications, directions, facial expressions, ....), pure naivete & near complete rigidity. He is regularly taken advantage of & this extends to me & our daughters as he is unable to "see" the pawns he makes of us. This has extended to agreeing to allow a doctor to repeatedly sexually assault me because the doctor thought it was "okay", drugging me at the same doctors suggestion & refusing to engage in anything to do w/my cancer care because it's "unnecessary". Most recently we lost our home of 25 years on 60 days notice because my husband didn't think I needed to know when he was advised of the plans to close the house more than 2 yrs previously. In a new location now, more than 7 hrs from our community, we have no supports & he is continuing to make sure as always, that I in particular, make no new friends - difficult anyway as I am so ill. Hubby is thoroughly unable to comprehend his own behaviour & genuinely shocked - over & over - that anything he has said or done has resulted in such terrible consequences. Genuinely horrified. Yet he refuses to even attempt change or learning or taking advice of any kind. He recognizes no patterns in his behaviour & believes sincerely that nobody "should" be hurt or taken aback by his behaviour, refusal to modify or learn about his behaviour. Bottom line, he is a gentle man with extremely destructive behaviours, keeping his family hostage to his ASD due to my inability to flee w/ the children during over 15 yrs of surgeries (33), chemo & everything else part of living w/cancer. I sincerely wish I had never been lured into any treatments- much of which was "signed off on" by hubby despite him knowing my wishes & my objections.
Recently, recognizing my inability to protect my children's futures, the only reason I ever agreed to any treatment & in despair that the changes due to losing our home had driven hubby into even more entrenched ASD & unending passive aggressive behaviours - I tried to end my own life. I notified him of what I was doing at the time, explaining exactly the reasons why, from literal hunger to emptying bank accounts w/out consultation or notification. He did nothing then or since. My effort did not succeed obviously, largely because I have ever been hopeful & tenacious despite all the evidence of the uselessness of my accommodating & seeking to "help" & understand hubby. My problem has never been w/the fact that hubby has ASD. My despair has always been & remains, that hubby will not make any effort to shift a single behaviour or acknowledge that his behaviours are nuerodiverse rather than neurotypical. In recent years, he's taken to saying things like, "I know I have ASD but I just think I don't fit the diagnosis" & "I will do anything to make you happy" whilst doing nothing I have directly told him must be done. For example, I need to eat small meals regularly, but rarely have the capacity to fix a meal for myself. I say, "make sure I have food regularly throughout the day, here are the resources listing exactly what foods & quantities that will help." Yet I live on the odd yogurt & meat pies because he will fix food only when I literally beg him or he believes it's "time" for dinner. He makes me tea throughout the day & doesn't understand why this is not enough, why I'm often too dizzy to even get to the bathroom & remains oblivious & obdurate about at least trying to hep me have regular food. Yet, he repeatedly says "I'll do anything...." while ignoring black & white lists, sometimes literal lists, of what is necessary to just help me stay alive. As I was recovering, alone, from the after effects of the suicide attempt, nauseous, crying & exhausted, he came to me & offered to take me to a restaurant for dinner. He was surprised & dismayed by my anger & rejection of his offer.
Now he says he will "talk" to someone else with ASD, something I've begged him to do for years, because he really doesn't know what to do to "make you happy" & to "get help for my ASD". There is little therapeutic help available - the last "specialist" we saw spent the session ridiculing me & handling hubby w/kid gloves. I later found that she had no specialty & no license to practice as she told a gullible hubby who didn't check. I did find a social worker who also claims ASD expertise & may put us on her wait list in two weeks time.
Will those of you who have found some success in living with NT's please "speak" with hubby in this forum? There's far more than can be sorted here but perhaps you have some guidance to help him help me - just to survive. It's clear he has PDA (pathological demand avoidance). Perhaps those of you here w/the same "twist" to the ASD also have found ways to enable you to "engage" with an NT partner. I've found the people in this forum to be not only wise, but exceptionally compassionate in the past. Will you urgently try to apply those qualities to this crisis & help hubby & me? I'll ask him to identify himself as The Canadian in this thread.
This is my first experience in any sort of online forum. I'm pretty much a complete communication idiot and talking via modern technology is no exception. I am a 62 year old guy diagnosed with ASD about 6 years ago. I've read a bunch of books ,some things I identified with, some not so much. I've come away from reading them not with the 'aha' moment so many seem to have but rather feeling depressed and still very confused as to what to do to make life tolerable for the folks around me."Seek therapy help" I'm told but real expertise doesn't seem to be there. Especially at $160 an hour. I'm hoping by being a part of this forum I can pick up some ideas and thoughts to help me navigate the urgent every day stuff. (I'm the husband of tnenacioust who wrote the message above) Thanks!
Welcome to the forum - I've found it really useful as a resource over the last few months to see what other people are posting and seeing how it fits in with my experience (some of it doesn't but a lot does - and more than I anticipated).
I'm 59 and just been referred for assessment but there are quite a few on this forum around our age that regularly contribute and I have found it helps that there is that "peer" support. Initially I was reluctant to get involved but I found local meetings where ASD adults could get together to share experiences and discuss challenges that I finally came round to acceptance of the condition (that only happened a couple of weeks ago after 10 years knowing!)
TenaciousTwrote about you that "I know I have ASD but I just think I don't fit the diagnosis" which indicates that you don't truly accept it in yourself. But I have found (after some months of despair) that there won't be a big 'aha' moment but lot's of little ones as you gradually come round to seeing how a particular ASD trait affects you but only when you take that important change in thinking.
I hope you find this valuable and now that you've taken the first step you will continue to use the forum for feedback and help going forward.
Thanks for that Andy!
I really appreciate your input. I do accept my diagnosis. It's really hard to see yourself as others do.
That's a telling response - "see yourself as others" - it may help to explain why you didn't get the 'aha' moments from reading a book. I've read books too and while they were interesting on an intellectual level they didn't explain things in a way that I could "see" in my imagination. I now know that this is the ASD trait of having a visual mind - seeing is believing - and it's only through talking with others and their different responses that I am able to put flesh on the bones (turning the theory into something I can relate to).
But this also helps in understanding others - empathy. If you can see how your mind thinks and (re)acts, you can then start to find out how and where it is different to the NT. And then you can start to learn the rules.
How about setting aside 5-10 minutes a day to sit and talk with your wife. First make a list of little areas where you think differently (leave the big, heavy stuff for now). Then each subsequent day you can take one from the list and discuss for 5-10 minutes - making notes on what each of you thought and the expected responses/reactions. Then go away and ponder, investigate and use this forum for any advice or support you think you need or think would help.
In this way, you don't tire out your wife and you can take it in small steps do, hopefully, generate an appreciation of empathy even if you don't have it. It also means that you can use the forum to focus on specific areas - which would be much easier for us to respond to in detail.
Just a suggestion but hope one that you could use or develop?
Wow, you are a very bright guy.That was very helpful..The 'visual mind' is very true for me.
Planning, organizing , taking in verbal info can be very difficult. Any suggestions appreciated
My flat response to Andy with respect to our situation is unfortunately very typical for me. My wife is in a very very bad place emotionally and physically . I need some urgent advice as to how to respond in ways that can help her. I DO want to help , encourage and comfort her .. She says she tells me directly but I can't seem to grasp . She needs me to apologize in a meaningful way for the abuse I've directed at her. I don't know how.
OK - your wife described you as "artist hubby" in her introduction and you like the idea of the "visual mind" - so is that something to work on?
Can you draw, paint or create a personal card? Perhaps a favourite flower or place on the front? With one simple word inside ("Sorry"). And just signed with your initial.
It's a simple first step and very personal - and, hopefully, meaningful for your wife.
We're just looking for that first small step to start you along the path.
At this point she's so angry and discouraged I don't feel that would be much help.She needs to know that my daughter (who is also ASD) and I DO love and care about her. It seems like the two of us are behind thick opaque glass doors and cannot connect with her on her level.. She told me that she has lived for 26 years without anyone caring about her. This is not true from my perspective but that's useless to her if she cannot feel she's loved and appreciated.
So the "20 yr old w/ASD" that your wife referred to is your daughter. And you've provided a literal version of your visual feelings (the thick opaque glass doors) that you can use as a device to illustrate how you feel - both you and your daughter (does she feel the same as you? - can you get together with your daughter and connect at the ASD level?)
What I'm trying to do is suggest a way for you to connect with your wife on YOUR level as that first step. Like you, I cannot imagine connecting on her level - the suggestions are based on what I would try and do if I was in your circumstances and with your talents as an artist.
You've come a long way in a short space of time. And the reluctance to change is another ASD trait - but so is having a special talent like art and you always have to draw that first line with pencil or the first stroke of the brush with paint.
How do you take that first step in a work of art?
First thanks for taking the time to talk to me.I don't believe I've come a long way in any amount of time.I'm really worried and sad for my wife. She is so miserable. Can we as asd folks even know how to rectify damage we've caused?
This reluctance or inability to change behaviors frankly scares the heck out of me. I've been described as stubborn and inflexible. That's the last thing I want to be.How to change?
Art for me has always been instinctual. It's a no brainer This important stuff is not .
It occurs to me that in order to change, one requires feedback of some kind.
We're bad at picking up cues, so how about soliciting a "mark out of ten" from your wife for the morning, afternoon and evening?
For example, at lunchtime, you ask her to give you a score based on the events of the morning, where 0="her worst enemy" and 10="the love of her life".
When you get your score for the last few hours, ask her what was the single biggest influence in the rating. E.g. Say she gives you a rating of 5. You ask why, so she adds you were no help at all but at least you didn't lose your temper.
Continuing this example, you'd then know that losing your temper was a big drain on her feelings for you. When you do manage to get something right (or perhaps just "less wrong") you can use this feedback game to hold onto the positive action, so you can keep doing it, then use future scores to improve further.
Good - you recognise the need for change and the fear - these are big steps along with asking how to change.
Do you have a strict routine? For example, after I get up and have breakfast I wash, then clean my teeth and, finally, have a shave - always in that order - and if I get it wrong I imagine all sorts of ways my day is going to go from bad to worse - and, guess what, it doesn't.
So - make a small change to that routine - and work at it. Then build on it.
Thanks for the kind responses . Real change . That's a tough one for me.Had a strong realization though. I'm extremely lucky to have a woman who has been willing to put up with my nonsense all these years! I am very grateful and need to 'find' that feeling on a regular basis.
Off to see a professional specializing in adult asd in a few days , so I'm hoping to get suggestions there...
Wondering a bit about routines. Is no-routine a routine? I've read some that suggests aspies are very routine centered, but I think my lack of routine is an issue with respect to organization, planning etc. Poor executive function I guess.