There can be good days, weeks, and months! But . . .

Six months.  Half a year.  All relatively peaceful.

What’s the secret to achieving such happiness?  Oh, sweetheart, there isn’t one.

There are things that help.  Avoidance. Refusal to engage in circular arguments.  Refusal to share my emotions.  Care not to speak with strong emotion.

Those exact same things I always say and know to be true, but tend to forget.  I realize this afresh, every time I fail to implement such strategies.

Like today.  After another go-round on this endless NT/AS carousel.

I AM SISYPHUS.   And this marriage sometimes feels like the definition of insanity.

There can be good days, weeks, and months!

But . . . .

Description

In Greek mythology, Sisyphus was punished by being forced to roll an immense boulder up a hill only for it to roll down when it nears the top, repeating this action for eternity. Wikipedia

Only When Things are Really Bad

Seems the last few years I’ve only checked in here when things have been really bad.  Yes, this week has been Really bad.

Last night, for the first time, I told one of the children that their father has Asperger’s.  And told that child that “we marry our parents.”  Meaning we tend to marry into what we are used to and have grown up with.  Be aware, kiddo.  Examine potential future mates carefully, through the lens of knowledge.  Don’t have a marriage like ours.  PLEASE, please don’t!

Because in your marriage, I don’t want you hiding away in a locked bedroom or bathroom more hours than you can count.  It’s my alternative to divorce.  And I don’t want this for you.

I want you to be able to communicate with your future spouse.  I want you to feel heard, understood, and loved.  You haven’t grown up seeing a marriage with even the most basic biblical communication, and that is my biggest regret in life.  My regret is not so much that I didn’t have it for myself, but that our marriage didn’t model godly communication for you and your siblings.

I ache for myself tonight.  I ache for my children tonight.  I ache for the negative impact that will affect future generations.

Lord, have mercy.  Please, God, have mercy.

Lack of Empathy for the Children

Wow.  And I thought his lack of empathy for me was horrible.  Nothing makes my blood boil more than when he fails to show any empathy toward my children!  The kids are old enough now to more clearly and verbally express their exasperation and frustration.  They can feel very, very, emotionally hurt by his seeming callousness.

The children should be told that he has Asperger's.  But, how?  He is certainly not going to tell them.  He won't tell anyone. How should I go about explaining this to them?  Do I share how nearly all of our marital strife is rooted in the NT/AS marriage dynamic?  "Marriage doesn't have to look like this, kids."  I don't want their future marriages to be like ours!

Sometimes I am encouraged at the thought of our marriage becoming peaceful, and maybe even fun, once we are empty nesters.  But, then I realize there will be grandchildren one day.  And the issues that upset me so much now, will return when he is with the grandchildren.  And if our adult children have problems and need emotional support and empathy from him?  He has the power to (albeit unwittingly) destroy them.

Which destroys me.

Yes, I know.  It is time to go back to counseling.  Way, way past time.

God, help us all.

Speaking of Consequences . . .

Yesterday, my aspie spouse started yelling at me in the car.  What started the argument was, of course, my fault. 


Because I'm a total idiot.  Mainly, because I have feelings.  And (cardinal sin that it is), I tried to share said feelings.


So stupid of me!


Will I never learn?  Obviously not.


No matter how much brilliant and helpful how-to-speak-to-an-aspie-knowledge I store in this noggin of mine, my natural, God-created heart will vomit out my feelings via this mouthpiece of mine that can't seem to stay shut.  Or to remember the "rules."  Great rules, yes.  But are they always there in an argument?  Nope.


So, don't feel like a failure when the tips, tricks, and rules are forgotten and feelings spew out.


Take a deep breath.  And get out of the argument as fast as you can.  Any way that you can.


Know what I did yesterday?  When he was yelling at me?  And I was stuck in a car?  (Normally, I drive.  Again, I was a complete idiot yesterday and forgot to insist on driving myself.)


I got out.  In the middle of an intersection.  At a red light.  In the middle of traffic.


And I started walking.


I had no plan other than to just get away from him.  Because he will no longer be allowed to treat me that way.  To speak to me that way.  To YELL at me.


I walked several blocks.  Home was about five miles away.  And I was willing to walk all the way, around dangerous, sidewalk-less curves. 


Maybe I would've called a friend.  Or in a momentary bout of insanity, accepted a ride from a stranger (a female stranger, only, though).  I guess I could always call a cab.  And charge the bill to his credit card.  Ha!  Now THAT would get his attention.


Well, he pulled up beside me, completely shell-shocked.  Where am I going?  I am going home.  I am not spending the day with you.  I am not joining you on the plans we had for the day.  I am going home.  If you will take me straight there without talking, I will get in the car.  Otherwise, I will find another way home.


And he drove me home.  Where I locked myself in the bedroom for the rest of the day.  (*Another life-saving tip:  get a doorknob with a lock to which you have the only key!)


At the end of the night, my aspie quietly and humbly apologized for not listening to my concerns.  Yes, my aspie has come a very, very long way.  Apologizing for "not listening to my concerns" would never have happened the first umpteen years of our marriage.  These days, however, my aspie can actually be pretty darn awesome.  I thank God for that.  For getting us help.  For couples counseling, and therapy, and a diagnosis, and answered prayers.


Keep praying.  Forgive him, and forgive yourself for all the times you mess up and OOPS! share your feelings.  Use consequences.  It can get better.  It can, it can, it can.  But it will never be easy.  It will never be over.  Aspergers will always be there as a trial for you both to fight your way through, learning, growing, and becoming better and stronger because of it.


God is good.  God is in control.  God gave him this.  God gave you this.  And He will provide a way for you both.

Consequences and Nondefensive Communication

Another great book worth having at your fingertips for frequent reference is "Emotional Blackmail" by Susan Forward.  The author states that "Nondefensive communication always works!" And she is absolutely correct.

Over the past few months, I have worked hard at communicating more effectively with the aspies in my life, especially with the ones who tend to be rather angry.  My getting defensive, yelling, crying, seeking to argue, justify, or give reasonable explanations, only escalated problems.  Two major changes, however, have impacted my life immensely.

1.). Consequences.  Set a boundary line around issues and areas that need help, and start protecting your time, energy, heart, and life.  Be calm and clear.  After asking nicely that your aspie take your feelings into consideration (which they likely won't and/or just won't know how to manage such a feat), state the consequence for failing to take care of your comfort or health.  "I feel scared.  If you do not stop speeding on these dangerous roads, I will find another way home from the event."  "My pain level is bad this week.  If you do not put the in-laws in a hotel when they come to visit, I will go stay in a hotel myself until they leave." "I'm not willing to be yelled at. I'm leaving." Sound too harsh? An NT would not as likely need such directness along with a consequence, after explaining one's emotional turmoil or health problems that are affected in a given scenario, but your aspie might.

2.) In an argument, use Nondefensive answers only and refuse to justify, argue, defend, or explain yourself.   For memory's sake, the book gives the acronym JADE (don't Justify, Argue, Defend, or Explain).  I prefer more grim terms, and use the acronym DEAD (Don't Explain, Argue, or Defend).  Because if there will be no chance of reaching mutual understanding, the sooner the argument is killed the better!
Most importantly, one should commit to memory a list of Nondefensive answers:

"I'm sorry you're upset."
"I understand how you might see it that way."
"Really?"
"You're entitled to your opinion."
"This is the way it has to be."
"I need to think about this more."

and one more time . . . The one phrase that can be used in any conversation that will bring an argument to a close . . . "I'M SORRY YOU ARE UPSET." (aka "I'm sorry you feel that way.")

Respond with that one phrase and always remember your goal for heated arguments.

DEAD.

Don't Explain, Argue, or Defend!  

What?  You disagree?

I'm sorry you feel that way.  ;)

Get ready. Get set. And GO!

Literally.

Sometimes it is necessary to leave the relationship in order to wake the aspie up.

Read "The Emotionally Destructive Marriage" by Leslie Vernick.  This is a different book from "The Emotionally Destructive Relationship" by the same author.  Vernick goes against the common Christian counsel when she encourages a time of separation as a positive step.  How true that "if you don't allow the abuser to suffer the pain of consequences, he will never change."

I am a Christian whose spouse has Asperger's Syndrome.  And I left my angry aspie.  Got my stuff and kids ready.  Got set for the right moment.  And left.

Five years of pleading with him to go to counseling, to be evaluated for Aspergers, and to work on communication in our marriage met adamant refusal.

It took my leaving to wake him up.  It took a dramatic, drastic, serious action.  It took suffering the consequences.  And you know what?

My spouse just received an official diagnosis of Asperger's Syndrome.  A 100% confirmed diagnosis.

And we are now in marriage counseling with a counselor who is very familiar with autism spectrum disorders.

Praise God.


Let's get ready, get set, and go.

Get ready.  Get set.  And GO.

Conflict with a Female who has Asperger's Syndrome

Oh, HELP.  Holiday drama time is here again.

Conflict, conflict, conflict.  This time with a woman who has Asperger's.

Her "feelings are hurt."  She is demanding certain actions and behaviors from another person.  She "takes no delight in understanding, but only in airing her own opinions."  (Which the Bible calls a fool, btw.)

There is zero desire to hear the other person's perspective (of course).  There is no compassion or empathy for the struggles the other person is going through.  There is an air of superiority, and there are many demands to have her own way.  Guilt messages are vomited out of her mouth.  And it's all making me sick.

There is no point in trying to share a different perspective, right?  So, what do you do?  Really.  What do you do? 

Reading, and re-reading Boundaries by Cloud and Townsend.  The chapter that deals with Guilt Messages is excellent.  This relationship may completely break down, for a time, anyway.  And that might be a necessary, and eventually, a productive thing.

DEEP,
DEEP,
SIGH.

Water Torture

It's like water torture.

Yep, we hit a bad spell again.  Where I feel like the beat up sick guy in the ditch and he's the guy who walks right past without offering to help.  He was most certainly NOT the good Samaritan this weekend.

What did he do wrong?

It's what he doesn't do that hurts.  That grieves.  That kills.

Head held under water...feeling like you're gonna drown.  Uh huh, the pressure is awful and you think you're gonna die.  Then head up for air.  GULP in that air.  Breathe it in hard and deep cuz you'll be put back under again. 

When?  You never know.  Just be prepared at all times.

Breathing deeply today.  Filling up my lungs, my heart, my soul.

I hate water torture. 

God, help me to suffer well.  Help me to run this race and hear "well done" at the end.

"To live is Christ.  To die is gain."

Amen.

A Good Progress Report to Share!

Okay.  Nice to have a little something positive to share about progress in an NT/AS relationship:

First the bad news, or I should say the 'typical scenario' that occurred recently . . . NT wife was bedridden with an illness.  AS spouse did not once, all day, check in on NT wife.  Did not once ask if she needed medicine, food, or even a sip of water.

Good news . . . instead of being overcome with anger and flooded by tears, NT wife was fairly emotionless (wow) and calmly and rationally went to AS spouse and said something along these lines:

I am really sad and feel very hurt that while I was so sick and in so much pain you went all day without even once checking to see how I was doing or if I needed medicine or even water.  It also hurt me that when I told you I didn't feel well the first thing you did was act frustrated that I was messing up your plans for the day.  You didn't ask questions or try to find out exactly what was wrong or how I was feeling.  That is very unkind and unloving of you.

Now, if it isn't amazing enough that NT wife was not YELLING and crying while she said these things . . . hold on to your hats folks, because a miracle occurred when AS spouse replied with the words, and I quote:

"I'm sorry."

Miracle of miracles!  Wham, Bam, Ala Ka Zam!  And that's all he said!  He didn't get defensive and make excuses and make it all about him and his frustration.  He shut the heck up after saying "I'm sorry."

WHOA!!!!!!!!!!!

Yes, I'm in shock.  No, I never thought I'd see the day.  Please, God, let this not be a one-time event.  Please, please let this be real, sustainable progress in an NT/AS relationship.

Can I hear an "amen?"

AMEN!

It's Not About You. It's About Autism!

This is turning out to be a very Word "Full" Wednesday . . . thanks for all your comments everyone!

So here's the other Big Thing about all this we've been discussing in the comments lately.

If "autism" is allowed to be this separate entity, if you will . . . this abnormality/damage/handicap of the brain . . . . then when we NTs share our frustrations, it is NOT "all about you, the aspie."

It's our struggle with autism.  It's our struggle with the differences and frustrations that come from AUTISM.  It's not about YOU.

We may believe you to be kind, loyal, brilliant, handsome, and the man of our dreams.  But sometimes we get frustrated and upset by the different way you think and act.  We get frustrated by the brain differences that come from autism.  And we try to explain to you our frustrations.  And then you act irritated with us for doing so.

So do you want us to act like everything is okay?  Do you want us to suppress sobs in the closet?  Or are your our soul-mate, our spouse for life, the best friend we should confide everything in?  Can you please make it safe for us to share?  To share what upsets us?  To share our feelings in safety (this means you will listen and love us gently without being defensive)?

For the aspies reading this . . . let's say your NT spouse is taking a medication that alters her mental functioning.  It makes her forgetful and disoriented like an alzheimer's patient, at times.  Sometimes it makes her aggressive and hostile.  NOW.  She CANNOT HELP these things.  She can struggle against them, but her brain is affected by the meds.  And it is very, very difficult for you to live with.  It is frustrating and painful to you sometimes.

Say that you want to try to explain to her what is frustrating you.  Should she get defensive?  Like you are attacking who she is?  It's the medicine.  It's not "her."  It's okay for you to discuss with her what is difficult for you.  And she can say "I'm sorry."

This is where it helps you to separate who you are from the autism that affects your brain.  This is where you should say "I'm sorry" without getting defensive.

IT HURTS us.  "It" hurts us.

And we NTs want to talk it out, explain our feelings and emotional grief.  And we want a hug, a listening ear, and to hear "I'm sorry."

That's what we're missing.  And that's what we need to be happy.

It's Not About You. It's About ME!

One of the most frustrating things in trying to communicate with aspies is the inability to share your feelings and perspective without the aspie getting defensive.

If I attempt to share my internal struggles, instead of listening and acting like my pain matters to him, he focuses on what my pain says about him.  But there are times when emotional sharing is not about him.  It's about me.

So, aspie friends, if I share how difficult something is . . . accept that it has nothing to do with you for a moment.  It has to do with me.  It has to do with a personal, internal, emotional pain.  That I am trying to work out and deal with, both for my own happiness and yours, too.  That's what we NTs do, ya know.  We talk it out, we write it out, we work it out, out loud (sometimes).  Just listen.  And nod.  And hug.  And don't respond as if you've been attacked. 

Because for a little while, it's just about us, okay?

It's not about you. 

If you think it is about you and you think we're telling you how horrible you are . . . KILL YOUR PRIDE for a moment and just say "I'm SORRY." You don't have to mean that you're sorry for being at fault when you don't think you are at fault.  Just say the words "I'm sorry" and think to yourself that you are sorry that the person is unhappy.  That's all you have to mean when you say it.  Can you do that?  Forget about it being about you to any degree.  Think about the other person's obvious unhappiness at that moment and be sorry for them.

That's ALL you have to do.  That's all you should ever say in that scenario.  You have the power to make the NT feel better, be happier, and love you more, just by saying the words "I'm sorry" when they are unhappy or upset.  Try it!  They are the ultimate magic words.

And I think that is the absolute hardest thing in the world for an aspie.  To do.  Or to say.

FLIP SIDE: In Sickness and For Worse

This is a follow-up post to "In Sickness and For Worse":

Keep in mind that one of your aspie's best traits is his/her loyalty to you.

If you are injured in a car wreck or one day have brain cancer, become brain damaged, and are then just not yourself for the rest of your life . . . your aspie would stick by you.  She/he would keep her vow to stay with you when many NTs wouldn't.  Many NTs would run and leave you all alone.

Your aspie is likely very faithful and loyal. We should learn this great trait from them. 

It is worthy of honor.

Just Accept It, Even If It Doesn't Make Sense, Okay?

Okay, aspie friends, we come to an impasse over and over again.  We explain something you can do to help our relationship.  Something you can do that will make us feel better, that will make us happier.

But it doesn't make sense to you.  So you don't do it.

And then we get mad.  And that anger takes root and turns into bitterness.  And then we start to really, really hate you.  Sad, but true.  And yes, that anger/bitterness/hatred part is something we have to work out ourselves, apart from you.  It's an internal struggle.

But there are things you can do to make that root disappear more easily and more quickly.  There are things you could have done to prevent it from growing so quickly and strongly in the first place.  You watered it.  You helped it flourish.  We are responsible, ultimately, for it.  But you played a part, however unknowingly.

When we tell you what is important to us, please (for the sake of our happiness as well as your own):

JUST ACCEPT IT, EVEN IF IT DOESN'T MAKE SENSE, OKAY?!

Accept that we NTs aren't going to make sense.  Accept that when we say something is important to us, IT IS IMPORTANT, even if it is "senseless" to you.

Small talk.  Hugs.  Flowers.  Diamonds.  A pet. 

Our dreams.  Our fears.  Our happiness.  Our tears.

They matter.  Take note.  Remember.  And act on it.

Last night my aspie husband brought home a large plastic tarantula.  And I am hurt.  Deeply, deeply hurt.  It just makes me ill.  I am severely arachniphobic and for all of their lives my children (at least they remember!) know I have "banned" any toy spiders from entering this house, and all of sudden he just 'forgets' that?  I take this as him forgetting who I am.  Forgetting what matters to me.  Forgetting to think about me.  Forgetting to love me.

You can explain away the aspie brain all you want.  It still HURTS MY FEELINGS and was a careless, insensitive, and thoughtless thing to do.   He wasn't thinking about me at all.

Whether purposeful or not, it was an UNLOVING thing to do.

And things like this are par for the course in an NT/AS marriage.

And so I struggle and work on forgiving him and getting over my hurt.  And he?  Well, he brushes it off as ridiculous because "that doesn't make sense."  It's a senseless thing to get upset over, he thinks.

Who's doing all the work now?  Where's the one-sidedness now? 

Just accept it when we tell you something is important.  Please.

Please.

Tips for the Aspie Female

What I Wish My Aspie Girlfriends Knew About Friendship

1.  I wish all aspies would read Dale Carnegie's How To Win Friends and Influence People.  And take notes.  And work on applying what they read.

Applying the principles in Carnegie's book will draw people to you. It teaches you how to show interest in another person. It focuses on making the other person feel appreciated. It teaches you to shut up and listen. And to ask questions about what someone else is interested in. People are by nature very interested in themselves. So if you act sincerely interested in them, you will be showered with attention.  People will like to be around you!  But a meaningful female friendship takes even more to sustain than Carnegie's book delves into (it was written by a man, you know). 

2.  I wish my aspie girl friends would accept that a close friendship involves mutual sharing.  This is give and take.  This includes asking about the feelings of others.  It also includes sharing your own feelings.  But maybe feelings talk is beyond you.  Okay.  Mutual sharing of some sort is still required.  At least habitually ask something about others.  And habitually share at least a little something about yourself.

Some of my aspie girl friends never ask anything about me.  They talk about topics of interest (that is, topics of interest to them), but never ask about my life, my thoughts, my health, anything.  These are very superficial companions--and it is very hard to feel close to these aspies.

And then I have a few aspie girl friends who ask a lot of questions about my family, my health (no, not about my feelings--are you kidding?), but do not share anything about themselves.  This gets old.  Because friendship should be give and take.  Give of yourself by asking about others, yes.  But the give also involves letting the other person "in" to your life/thoughts/feelings as well. Because too much "giving" of yourself in the realm of mere asking about others . . . can seem like "taking" too much from the other person.

The asker-only aspie can come across as an intense counselor or may even make the NT feel as if she is standing before the Inquisition.  It can be downright frightening at times to be the "special interest" and focus of a female aspie!  These are often the aspie females who will never respond to your questions via email, either.  "How are you?  What did the doctor say?  Are you okay?"  C'mon, aspie girls.  If someone asks you a question it means they care about you.  Please make the time to answer it.  Answering questions about yourself and voluntarily sharing at least a little something about yourself (on a regular basis) is necessary fodder for a solid female friendship.

Sound tricky and confusing and way too difficult?  Not to an NT.  It comes naturally.  Your turn, my turn.  You share, now I share.  I give, now you give.  It's a dance and NTs assimilate this naturally on the playground as wee bairns [children].

If you truly care (and you keep saying that you do) about sustaining friendships with other females, it will take very hard work.  Stop throwing your hands in the air and whining about how you always try and it never works.  Keep trying and keep working.  Read books on friendship. Get interested in the study of friendship.  Make it a scientific research project and determine to master this subject area with the dedication of a PhD student completing a thesis.   Ask questions about others.  Respond to questions via email (quickly).  And share a little something about yourself.  And keep doing all of these things.  Over and over again. 

You can do it.  And we can be friends.

When Your Girlfriend Has Asperger's Syndrome

(By "girlfriend" I am simply referring to any aspie female friend.) 

I am the wife of a man with asperger's, but I am friends with many females who have strong aspie traits.  And the same lessons learned in an asperger marriage apply in relationships with aspie females.  You gotta be prepared for some things.  You must drop those expectations that they will act like your typical girlfriend!

1.  If you need a shoulder to cry on, the aspie female is not the one you should call.  She might get V E R Y uncomfortable seeing your tears.  And then you might get very hurt that she is just sitting there staring at you as you pour heart out.  If you need emotional support, be sure to call someone else who will be higher on the empathy scale.

2.  But the aspie female is likely VERY loyal and ready and willing to offer practical help to you, even when no one else will  . . . . if you clearly ask and spell out exactly what would be helpful.  She wants to help, but seriously doesn't have (forgive me, but it's true) the common sense to know what to jump in and do to help.

3.  She might not respond to your attempts to stay in touch.  She may have "always been there for you" when she lived down the street, but if one of you moves away, you may rarely hear from her.  It doesn't mean she doesn't deeply care about you.  But the idea of a friend or family member "being close" may be taken literally. (Example:  "you're close to people you see often because they live close to you.")  The idea of emotional closeness is not easily understood by the aspie.  And knowing what it takes to sustain a long distance relationship long term?  That may be a one-way, very determined effort on your part.

4.  Disagreements or conflict of any kind could rapidly destroy the relationship.  If you ever try to address something the aspie female does that is upsetting you, she will likely feel attacked and may get overly emotional.  "You don't like me/love me!  You hate me!  You don't appreciate or admire me anymore!"  She won't be able to see that she is not considering your feelings.  Trying to get her to see your perspective is really rather pointless.  You have to drop that attempt at resolution 'by talking it out' as you do with other NT women.  The bottom line is, the aspie female just wants you to be cheerful and kind and patiently forbear with anything and everything she does, even when you are annoyed as hell by her behavior/habit/etc.  How what she does/says affects you is entirely beside the point!  And this being so, few female aspies are able to sustain friendships with NT women.  It will take unrelenting effort on the part of the NT to make a relationship with an aspie female survive.

5.  But when it comes to shared hobbies, similar areas of interest, and like minded ideas . . . you can have the best, most interesting and fascinating companion to hang out with.  The devotion and focus toward the shared interest will make discussions and outings fun, fun, fun.  Do you both love running?  Bridge? Sewing? Movies? With any activity that centers around a shared special interest, you may find you always have an eager girlfriend to join you!  And that can be a really wonderful thing.

Maintaining a relationship with a female aspie will be a lot of work.  There are expectations that must be dropped.  Do not expect empathy and remember she is NOT the best shoulder to cry on.  But know you may have the strongest loyalty you have ever known.  And you will have a knowledgeable and focused companion during outings that revolve around a shared special interest. 

I love my aspie girl friends and enjoy their company very much!  Easy?  No.  Worth the effort?  Definitely, yes.

"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!

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.  :(

Breathe Deeply

One of the workshops I attended this year at a large autism conference was "Caring for the Caregiver."  It was an accepted fact that parents of autistic children are drained, much as any caregiver of any disabled or handicapped person is.  Such folks are in a role with high demands placed on them and are in need of encouragement and a respite.  But hear an NT spouse use the word 'disabled' in reference to her aspie husband and more often than not she gets attacked--not encouraged.

An aspie spouse is an aspie child who has grown up.  And just as an aspie's mother is his caregiver when he is young, an aspie's spouse is oftentimes in the role of caregiver in their marriage.  And she  (or he) gets drained.

But currently there are very few (if any) workshops given specific to her filling that particular role.  So it's important to allow yourself to call it what it is and seek the kind of support any other caregiver of a disabled person would need.

The most important thing I learned from the workshop was that I must BREATHE DEEPLY.  Literally.  The medical doctor giving the lecture taught the following:  "Fill your abdomen with a deep breath as you count to three.   Then let it out slowly as you count to six."  This really helps body and mind and soul to relax.

Remember the instructions given on an airplane in case of an emergency:


"Put on your own oxygen mask first." Only then can you properly care for those who need so much from you.

Sometimes life feels like One Big Emergency in an NT/AS relationship, doesn't it.

Unbalanced Criticism

And my previous post leads me to ponder the criticism issue.  It's not that I hear an abundance of criticism.  Overall the problem is, of course, the communication deficit.  Because of the extreme deficit in the area of my aspie spouse giving compliments or praise, it seems as if any verbal remarks made to or about me are usually a criticism.

In "How to Win Friends and Influence People", one learns to balance criticism by first offering compliments or sincere words of praise.  In an NT/AS relationship, this probably isn't the way it's done.

The NT rarely hears praise or compliments from her aspergers relatives.  She is probably not acknowledged with positive verbal remarks or personal knowledge or appreciation of her character, personality, or any aspects of her humanity, for that matter.  So when she is then verbally criticized for something she thinks, did, or is . . . well, you can imagine the feelings this would invoke.

It's just a ranting day, I'm afraid.  I might delete these rants in a minute, but sometimes it's helpful to simply share raw, honest emotions.