"What the . . . huh?!"

Just when everything has been fine and dandy for a while, a "What the . . . huh?!" moment comes along and knocks you on your rear.

Cuz you did it again.  Your feelings were hurt and you thought he would care that your feelings were hurt.  Ya Big Dummy.  How could you forget like that?  He doesn't give a rat's be-hind about your feelings.  You know that.  C'mon.  You've been told a gazillion times.  When will you ever learn?

But seriously.  It hurts like the dickens, doesn't it?  "What the . . . huh?!" moments are all too frequent in an NT/AS relationship.  And they recur.  No matter how long it's been since the last time it happened, it comes back.  And it hurts.  It's the nature of the beast.  It's self-centered.  "It's all about him/her (the aspie)."  It's never about your feelings.  Your feelings simply do not matter.  All that matters is your smiling, unemotional acceptance of everything life throws your way.

And you forgot again.  You made an attempt to explain why you felt the way you did.  You attempted to share a piece of your heart with him.  But it's just not about you, ya know.  It's only about him!  He doesn't listen or try to understand the feelings-talk.  He gets defensive and feels attacked.  "So it's all my fault?!" is his response to everything you say.  "Damn, you big jerk!" you want to scream back at him.  "Would you just hear that I am in pain and act, even just act, like you care?" 

But I'm not being fair. The rational, logical part of me knows that.  This pain, at its root, is caused by his autism.  He does care about me.  If I have a broken leg, he comprehends that and will even perform acts of kindness that show he cares.  His brain just doesn't comprehend empathy for my feelings.  He doesn't "get it."  And he can't.  And I shouldn't expect him to.

The best analogy I have ever read was on a forum post by cmasp on leprosy.  Leprosy prevents a person from feeling pain.  And so a leper can put their hand into boiling water and not take it out, thus resulting in serious injury.  You can explain PAIN to a leper, but they cannot know what it feels like.  They can be taught to take a hurting person pain medicine, but they don't truly understand.  And the aspie can be taught ways to respond to you, but he isn't going to understand--deeply understand--what you are expecting from him in the realm of empathy.

And so the cycle continues.  I expect the impossible.  I get hurt.  I try to share my hurt and he gets defensive.  Will it never end?  I despair.

But love always hopes.  And God "opens the eyes of the blind."  I believe that.  Maybe, just maybe, I need to quit seeing him as the only one who is blind in this relationship.  Maybe I should hope that God would open my eyes to the wonder of His creating us male and female, autistic and neurotypical.  Maybe I should start hoping that I will rejoice more in these trials that bear the good fruit of making me less selfish, more patient, more tolerant, and more kind.

Maybe if I change what I hope for I'll have less "What the . . . huh?!" moments in this NT/AS relationship.

Maybe?

Let's hope!

Still Here

Thanks for the comments I have been so remiss in posting!  I'm still here.  Physical ailments have hit hard lately.  It's been helpful to see my physical weakness right now as equal to my aspie's neurological weakness.  I simply cannot physically do much of the work I had been doing.  And he simply CANNOT be an emotional/spiritual support to me.  We each have serious limitations!  Recognizing that and accepting it and dropping those darned expectations for him to do and be otherwise is So Very Important.

Neither is better or worse than the other.  Each are flawed and weak in some way.  Each has a job to do and these roles can be a complement to each other.  And when these two weak and flawed humans work hard in their areas of respective strengths, they can make for one very productive team.

Doesn't mean it's easy or fun, but it's funny how being totally weak can help us see such strength in others.

Autism linked to OXPHOS metabolic disorder

More and more research is being done on the genetics and link between autism and metabolic disorders.  A good article on this:

Has your autistic child been screened for metabolic disorders?

NT/AS compared to NT/AL-Z!

Just had a Lightbulb Moment.  Only scratching the surface of this and plan to dig deeper here as I am able:  http://www.thealzheimerspouse.com/ 

But here's the thought:  We aspie wives probably have much in common with wives of men who have Alzheimer's  !

A few similarities:
1.  Many of us know something is not working typically in our spouse's neurology, and yet we are NOT able to drop our expectations for our spouse to act typically.
2.  They don't really know us.  They can be kind and do things that are asked of them.  But they don't really know who we are.
3.  The odd ways and strange little things they do tend to add up and drive us batty.
4.  We are caregivers in need of support and a respite.

Maybe we've been scuba diving for coping strategies in waters that haven't been chartered yet.  Maybe it is the spouses of alzheimers patients who have the most wisdom to share with aspergers syndrome spouses.  Same water.  Different boat.

Frankly, My Dear . . .

So a bit of clarification on "not giving a damn."

It's not okay to not give a damn about another human being as a human being.  It's not okay to wish he would go skydiving without a parachute.  That's not okay.  Jesus says hate is the same as murder and murderers will not enter the kingdom of heaven.  Hate is not consistent with Christianity and one who hates is deserving of hell.  When you have hateful thoughts, quickly grab them, throw them to the ground, kill them, confess to God and thank God that through the blood of Christ you have forgiveness and can enter heaven, even though you are a wretched sinner and daily prove that to be the case.

I'll stop the sermonette now.  :)

But it is okay and in fact, probably necessary for an aspie's spouse to not give a damn what her aspie spouse thinks of her.  Because if she is needing his appreciation, admiration, adoration, consideration, she ain't gonna get it.

She must learn to absolutely totally not care at all what he is thinking, or as is more often the case, what he is NOT thinking, about her.

Love God, and live for His glory.  Seek His pleasure and work unto His glory and honor.  Your aspie spouse will benefit from your living for God.  And so will you.

Need people less, love people more.  Fight against the "fear of man."  Stop "people-pleasing."  Stop thinking or caring what anyone (even your spouse) is thinking or not thinking about you.  Just stop.

When you are tempted to dwell on others' good opinion or thoughts of you, say to yourself "I just don't give a damn."

And then look upward in serving and loving God.  And look outward so that you can see the needs around you and strive to love others more.

Those are the only things in life Christians should really give a damn about anyway.

The Aspie Caregiver and Chronic Illness

I keep reading comments on blogs and forums posted by aspie spouses who suffer from chronic illnesses.  If there are studies that have researched this I'd like to know more.

Caregivers who don't take care of themselves can suffer physically as well as mentally and emotionally.  Not resting enough, not eating well enough, not exercising...all these play a part in deterioration of health.

And then there is the lack of empathy issue when one is suffering.

"I'm tired." I say.  Aspie spouse responds "But you just got up."  I'm tired mentally, physically, emotionally, and spiritually!  Just because I am standing and walking around and YOU CANNOT PHYSICALLY SEE MY TIREDNESS doesn't mean I am not tired!

My child says "my head and throat hurt so bad!"  Aspie father says "I think you're fine."  Just because he is walking around and not vomiting doesn't mean he is not sick!

And so we learn, sad as this is, pathetic as this is, we learn that in order for him to recognize that we are not well enough to do work around the house/go to school/whatever he is requiring of us, we must not get out of bed.  We must be sure to LOOK physically sick or else we "most certainly are not sick."

And so we learn to stay in bed, exaggerating the look of our illness in order to get the most miniscule hint of understanding that we are not feeling well.  We do this so too much won't be demanded of our weakened systems.  And then we aren't getting the exercise we need and we are not eating well enough and are not taking care of ourselves in any other way.  It's self-preservation that barely preserves.

And chronic illness may be common for those who live with aspies. 

You don't say.

 

Putting Your Own Oxygen Mask On (first)

And a unique component to being caregiver to this particular 'disability' (let's call it that for the purpose of this post, at least), is that few, if any, others even know you are in this role.  Most caregivers are given encouragement and help from others.  Meals are brought.  Doors are opened.  Help is offered.

But not when dealing with this 'invisible' handicap/disability.  You are alone.  And the person you are caring for doesn't have a clue how much you are struggling and how hard you are working.  He doesn't comprehend that you need a break.  He doesn't understand the effort required just to get through the day.

We have multiple, serious problems going on in our lives right now.  So serious that friends are bringing meals and offering to help.  They see the external issues, and yes, they are very difficult.  But those issues are a drop in the bucket to this silent, invisible burden that I carry all alone.  While friends are offering sympathy and support during these trials we are facing, my aspie spouse is as he always is.  Completely detached and unaware of any emotional needs his wife may have.  But right now she needs emotional help and encouragement more than ever before in her life!  (Big Scream, Uncontrollable Sobs.)

As all of the pressures have been building and building and the lack of sleep (for me, that is, he sleeps through anything) adding up to where I can barely walk straight from exhaustion, he sees me lying down and says "What's wrong?"  I've learned the only 'safe' answer to that is 'I'm tired.'  This time that tiny part of me that tries to never completely give up hope that he could one day empathize took over and I actually said 'I'm exhausted'.  His response "Well, I've got to go to work."  Just a 30 minute nap while he watched the children could've rejuvenated me enough to function better the rest of the day. (I know, I should've said as much.  But in this state, I am unable to think logically and clearly.  I just needed some expression of understanding and help!)

OK, I think.  So maybe I can rest when he gets home.  He feels he has to go to work (though he has many weeks of unused vacation hours built up!), but when he gets home he will remember I am suffering right now and could use a break. Once home, he never once asks how I'm doing.  Around 9p I ask him to do the dishes and get the kids in bed because I desperately need to get some sleep (hoping for the first solid night's sleep in well over a week).  He argued, acted disgusted, glared, and grumbled.  There was not one inkling of empathy in his response.

Normally I am overcome with guilt and would work despite my weakness and exhaustion, but this time I went to bed.  If he can't take care of his wife when she is nearing nervous and physical breakdown then I'm going to have to take care of myself and not give a damn what he thinks about it.

Sorry for the negativity.  I'm at a very low point right now overall.  :(