Same old, same old . . . .

Well, I'm right back where I was several years ago, when my Aspergers journey first started.  It feels like that, anyway.

While my aspie husband and I were in marriage counseling, the marriage was at least getting his attention, and acceptable ways of communicating were occasionally on his mind.  Counseling for us stopped, and the marriage is back to horrible, and communication is ungodly.

I just found a blog post I wrote in 2011 and am re-posting in case anyone else is going through the same hell I am.  I desperately need to be able to hope again.  Do you?


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!

In an Asperger's Marriage or Relationship? Grieving the Death of the Dream

An asperger's diagnostician informed me that 80% of children diagnosed with Asperger's Syndrome (high functioning autism) have either a parent or a grandparent (likely undiagnosed) on the autism spectrum.

Many parents have a light bulb "aha" moment after the diagnosis of a child.  "AHA!  So THIS explains why my spouse (or parent) has always done such and such.  He (or she) has traits consistent with autism!"

And the relief of finally having a name to go with the confusing characteristics and behaviors is quickly followed by grief.  Please know that this grief is normal, and oh, so common. 

After going through the grief myself over the past five years, my advice to you is to go with it.  Don't fight it.  The dream of ever having a normal, typical relationship with your autistic loved ones is over.  GRIEVE! 

It's okay to have been in denial.  Don't beat yourself up if you had been denying the symptoms in the past.  You did the best you could with what you knew at the time.  And it's fine to be angry.  But try very hard not to take the anger out on those around you.  Journal.  Pray.  Confide in a highly empathic friend, or seek a good counselor during this time, to help you process all the emotions you are feeling.

Familiarize yourself with the stages of grief:  http://grief.com/the-five-stages-of-grief/  But most importantly, call this what it is.  This is the DEATH of a dream.  GRIEF of a true loss.

As you are able to better understand what you are truly going through, post-diagnosis, you will grow, and then be better able to take care of the differently-abled people in your life.

FOUND! A Christian Counselor for an Aspergers Marriage!

Check out this link:

Several good articles for the Christian living with Aspergers Syndrome

The link above has some good articles for the Christian, or Christian spouse of someone with Asperger's Syndrome or high functioning autism (as it is now called).

Best of all, there IS now a Christian counselor and marriage and family therapist who is very familiar with autism and Aspergers!  Go to: CounselorStephanieHolmes(dot)com for contact info.  She has both personal experience in her own life, and professional experience, with autism spectrum disorders.

AND . . . Drum roll . . . This Christian counselor will counsel patients all over the world via Skype, so no worries if her office is too far away.  That may sound iffy, but I vouch for her.  This counselor is legit.  She knows her autism stuff, and seems biblically solid, too.  I recently attended  a large conference where she was speaking.  I am in no way getting compensation or anything for recommending this therapist.  I'm just so thrilled SOMEONE has the skills to counsel women and men in Aspergers marriages.

 C'mon therapists and counselors out there....the future is here!  These Aspergers kiddos diagnosed in the 1990s will be getting married soon, and there will be gazillions of spouses seeking therapists with knowledge of autism.  This is seriously an untapped gold mine in the future of the counseling field. Aspie spouses may be the very best therapists due to their personal experience and wisdom acquired over the years.  So if looking for a field to study or career change . . . consider counseling with an emphasis on autism and families with special needs.

Learning to Trust Again

The single most helpful book I have read to date throughout my asperger's syndrome journey is "Boundaries" by Cloud and Townsend.  The second is like it, but goes deeper, once a person is ready to go deeper.  "Beyond Boundaries:  Learning to Trust Again in Relationships" by Dr. John Townsend is worth adding to your bookshelf or Kindle.

It's rare for a Christian to be biblically counseled that it's okay necessary sometimes to set strict limits on what behaviors one will put up with from a spouse, relative, coworker, or friend.  When hurt becomes harm, it's time to set protective limits around oneself.  Such limits may even mean ending the relationship entirely. 

And that's okay, too.

Expectations and Limitations

ACCEPTANCE is what it all comes down to, isn't it?  That's what they say.  That's what they've always said.  "Just accept me."  But we desire something different.  Desperately longing for emotional connection, we read every book ever written on the differences between men and women.  Trying every trick, applying every formula, nothing ever truly gives us the desired result.

We expect more.  We expect 'typical', 'normal', 'neurotypical'.  No matter how many books on autism we read, we can NOT drop our expectations.

And so we suffer.  Deep, depressing suffering engulfs us.

He has limitations.  Serious, brain-wired, emotional limitations.  He cannot be what we want.  He cannot.  Which means it is unkind and unloving of us to expect more of him than he can ever give.  We must accept his limitations.

The Mantra of the Aspie Spouse should be

"Drop the Expectations and Accept his Limitations."

If only it were that easy.

NT/AS Relationships Require Superhuman Strength

Living with and communication with someone who has Asperger's Syndrome requires superhuman strength.

You must give up expectations for
1.  empathy
2.  understanding
3.  your well-being, thoughts, and desires to be be taken into consideration.

You must have the ability to be independent and to
1.  take care of yourself (health, and rest)
2.  seek happiness apart from them

You must find ways to
1.  seek joy and relax
2.  find beauty in life
3.  make yourself look beautiful
4.  cultivate friendships
5.  have emotional support apart from them (counseling may be necessary)

It requires carefully balancing respectfully not caring what they think of you.  Because you will receive little to no appreciation or approval no matter how hard you try.  So STOP trying!

Christians must live for the approval of God alone.  Must learn to forgive as God, through Christ, forgives you.  Replace pride with humility, realizing you are a sinner, too, and no better (in God's eyes) than they are.

You must let go of:
1.  Guilt - when you are unable to think, act, or work as if you are a robot.
2.  Hope - that the person will change.  They are disabled, which is a normal part of a fallen world.
3.  Desire - for things to be different.

The only thing that can change or be different is you and your response to them.  And that requires the Holy Spirit's gifts of self-control and faithfulness.  Super-human strength.  Impossible.  Yet possible through Christ, and through Him alone.

Self-Protective Measures for the NT partner

Self-Protective Measures for the NT Partner

in an NT/AS Relationship:

* Don't require eye contact.  Because you might not like what you see (and don't see).  :(

* Don't make eye contact because you might not like what you see (and don't see).  :(

* Don't share your emotions.  Be stoic in conversations. 

* Don't share too much information. 

* Don't attempt "mutual sharing."

* Don't think they want to understand.  They probably don't.  :(

* Retreat often.

* Retreat quickly.

* Retreat.  To a true place of retreat.

* Don't ask.  Just smile and nod.

* Talk slowly.  In a monotone.

* Don't care when you only ever get disapproval.  Well, try not to care, anyway.

* Remember that your behavior is what matters most to an aspie . . . not your heart.

Love your enemies.  Bless your enemy.  If he is hungry, give him something to eat.  If he is thirsty, give him something to drink. 

Love your neighbor as yourself.

Love your enemies.

Who is Responsible for the Want?

From the book Boundaries:

"Your disappointed desire is what hurts you.  The problem lies in who is responsible for the WANT.  It's your want, not his.  You are responsible for getting it fulfilled, not him.  That is a rule of life.  We do not get everything we want and we must all grieve over our disappointments instead of punish others for them. . . . Problems arise when we make someone else responsible for our needs and wants, and when we blame them for our disappointments."

Oweee.

Okay, yep.  And aspie spouses do a whole lot of grieving. 

We also do a whole lot of blaming.

Deep sigh. 

"I can't think about that right now.  If I do, I'll go crazy. 

I'll think about that tomorrow." 

I'm so with you on that one, Scarlett O'Hara!

;)

Social Skills Songs

Our children love the social skills songs by Jeanne Lyons on her cd called "Gather the Stars."  They are learning about flexibility, changing the subject, and not talking on and on and on.  My personal favorite is the song which encourages patience and faith with people on the autism spectrum.  "Christina", "Flexibility," and my children's favorite, "Perseveration Station," can be heard by clicking the star next to the lyrics here:

http://www.bitlink.com/jeannelyons/samples.html

To hear the funny "Personal Space Invaders" and "Long-Winded Lou" and a few others you'll need to buy the cd.  :) 

I wish Mrs. Lyons would make an updated version with just her beautiful voice and a guitar.  This cd was created over a decade ago, but the lyrics and music are fun and helpful anyway.  My guess is children up to the age of ten would enjoy singing along with these social skills songs.

Aspergers: Live Chats

Another positive aspergers forum (which can serve as great, FREE counseling sessions if you ask enough questions!) over at Dephi Forums is "AS and their Partners":  http://forums.delphiforums.com/asandpartners/start  Be careful not to confuse it with another similar sounding one (which is full of aspie bashing).  "AS and their Partners" is moderated by a very insightful aspie male named Gerry who is married to an NT woman. 

Search the archives and then when you have questions that you need to get some insider aspie wisdom on, join the Friday night chats from 9-11p Eastern time and ask away.  Gerry is great at answering questions in real-time.  He ought to get paid for sharing so much "better than gold" advice, but I promise, it is free.  Just remember to be nice.  :)  No aspie-bashing allowed.

 http://forums.delphiforums.com/asandpartners/start

NT/AS Christian Counseling

Members of the leadership of our church recently attempted an intial (and brief) counseling session with my husband and me.  As he does not acknowledge that he may have Asperger's Syndrome, I did not mention it during that meeting.  Autism or any reference to "autistic traits" did not enter the conversation.

And it seemed very unfair to me.  For his sake!

He was gently censured and told that it is his responsibility to emotionally connect with his wife.  As much as the angry, bitter part of me wanted to stick out my tongue and say "NahNahIToldYouSo!"  I didn't do that.  :)  I felt sorry for him.  But what's a gal to do, huh?  He gets angry if the "A" word is used at all in reference to himself.  He would be livid if I "accused" him of being autistic in front of anyone else.

Aspies, please don't take this harshly, I'm fighting for him on this one . . . but those counselors may as well have told a blind man to parallel park between two brick walls without getting a single scratch on the car!  They are demanding something of him he is not capable of doing, aren't they?!  They are making him feel like a failure, and feel guilty for something he cannot help, right?

Obviously,  I can see he's bringing this on himself by his total denial of Asperger's.  That part is his fault and I am at a loss as to how to help him.  Many folks talk about the failure of counseling NT/AS couples when autism  is not brought into the equation.  Now I can see for myself that it truly doesn't work.

It may even make things worse.

My Wonderful, Loving Husband

My husband still does not believe he has Asperger's Syndrome.  But when I shared my newfound knowledge of autism's often comorbid condition, CAPD (an auditory processing disorder which can only be diagnosed by an audiologist), he listened.  And even though he did not seem to believe he had any hint of CAPD, and even though he thought it a waste of time and money, because he loves me and knew it was important to me, he agreed to go for testing.

And yes, the test results indicate that he has an auditory processing disorder.  I'm not at all surprised.  I think he is actually quite shocked.  It may take a while to sink in, so I'd better lay low for a while and let him process.

And I gotta say that I love, love, love that he was willing to be tested for me.  It means the world to me that he would do that for me.  This is another strong proof that he does all that is in his power (when it comes to mind) to show that he loves me. 

It has often seemed that he works harder than most people I know, in many areas.   The auditory processing test results make me believe this about him at a deeper, stronger level.  I think I can be more patient, more compassionate, more kind, and less critical than I have been with his slow processing and communication problems.  I hope so, anyway.  We shall see.

Why Is This So Hard?

There is nothing new under the sun.  I suspect Asperger's has been around for several thousand years.  Women have struggled to understand their husbands, to respect them, and to put up with their idiosyncrasies for many generations.  Our ancestors have been where we are.  But we have much more information and understanding (certainly about Asperger's) than our foremothers had even one generation ago.  So why is this so hard?

I don't know!  I do know that the roles in marriage were very, very different prior to the feminist revolution.  The men made the money and the women took care of the children and the house.  The men came home from work and probably sat in their chair, smoked a pipe, and read a book all evening while the women did everything else.  He wasn't taking care of the children, and so

she wasn't upset by how he was taking care of the children.  He wasn't lifting a finger to help with housework, and she wasn't disappointed by this because it wasn't expected of him.  I'm not advocating we go back to these starkly contrasting gender roles, just trying to think through the differences here.

Generations ago, extended families lived nearby.  I suspect most women had sisters, aunts, grandmothers, mothers, and in-law females all around them, maybe even in their own home.  This provided emotional support and probably much physical help as well.  Neighbors and church members were more involved in one another's lives giving encouragement, advice, and setting an example others could visibly observe.

What do we have?  We have TV.  Television is no help and no real picture of a functional family life either - quite the opposite, in fact.  We also have the internet.  We have information at our fingertips which can wisely be used to aid our understanding.  We have forums and blogs which let us in to others' lives so we know we are not alone.  These things can help.  But technology isn't enough.  So we have counselors who will listen, empathize and give us guidance.

But step back a few generations . . . it is obviously possible to survive without the knowledge of Asperger's we have now.  Surely we, too, can manage a difficult marriage without paying a professional counselor.  But we do need the support and counsel that is found in relationship with others.  We must determine to seek it out and find it!  And yes, pay for it if necessary.

Younger women desperately need older women to walk alongside them and show them how it's done, teach them what they've learned, and listen and encourage them along the way.  These ladies are out there, and can often be found in the churches.  But it's been so long since anyone has asked them for advice, they may be shocked at first if we do.  We should do it anyway.  Ask them over for tea, or take them out to lunch.  Quiz and question and pull out the wisdom they've acquired over the years.

And maybe we should realize it's a fairly new thing for any husband, Asperger's or not, to be expected to fill so very much of his wife's emotional tank.  Maybe in large part because we don't have the support of a community of women around us, the poor guy is expected to fill that giant emotional void all by himself.

What do we need?  What do aspie's wives, in particular, need?  We are emotionally and often physically exhausted.  We need housecleaning help, we need babysitting help, we need cooking help (fast food/frozen food works).  If it's too much for him to take on, maybe he can work more hours (or deliver pizzas) to pay for this help.  Maybe we can barter with other moms for an exchange of time/babysitting/goods/talents.  Mostly we need emotional support.  And so we MUST regularly meet with other (preferably older) women for emotional support, making sure we are reaching out to them and picking their brains for advice on managing life. 

Trying to figure this all out.   It shouldn't have to be this hard.

Don't Lose Hope

The most discouraging (okay, devastating) thing when an NT woman first begins to understand Asperger's is that she begins to lose all hope.  Any hope she had for change in her partner disappears and so she loses all hope for positive change in the relationship. 

Biblical counsel says "Love always hopes.  You can't lose hope!"  But what the suffering spouse must understand and the counselor must point out in order to truly help their counselee, is that with autism in the mix, the spouse must change what she hopes for.  She cannot hope he will be a Neuro-typical ("normal") person.  She cannot hope her relationship will ever look like she always believed it would/should/could.  But there is most certainly hope, and this includes hope for better communication between them.

She absolutely can, with a lot of dedication and work, learn the language of Asperger's.  It won't ever be instinctual to her, because she is wired with a different first language.  But as she begins to learn and conversationally use this new language (which uses English words but applies totally different meanings to many of those words), she will be able to communicate with her aspie spouse in a way she never has before.  Finally speaking his native language, she can then (and likely only then) be able to help him learn hers (and thus he will come to learn more about her). 

There really, truly is hope for an NT/AS relationship.  And this hope includes being able to better communicate with one another.

"Love always hopes."  1 Corinthians 13

Cracking Up

After telling a story about something so funny it made the person "crack up," my daughter asked if the person really got cracks in them. "No, it's just an expression that means you laugh really hard." Still looking puzzled, she said . . . "yeah, I thought so."

Recently during her speech therapy they worked on the meanings of several different expressions. And I am very thankful that our insurance is covering the sessions now (her doctor filled out a 'medical necessity' form).

Expressive Language Disorder

Our daughter was diagnosed by the speech therapist with Expressive Language Disorder. From what I understand, Social Pragmatic Disorder is included in this, but ELD is more comprehensive in scope.

Her recent "homework" is to name three things/attributes about any given object. For example, I am to say "tell me three things about a cookie." This is harder for her than I would have imagined.

She also was given a short paragraph to read and then is told to choose between three options of what might have happened next, what is the likely reason the person did something, or what would the person like best . . . She was NOT able to get these correct!

Another page of homework has sentences describing a situation and she is to answer how she thinks each person would feel in the situation.

I would not have thought to work on any of these things without the direction of the speech therapist, so I am very glad we are pursuing this!

Speech Therapy at Home

Our speech therapist gives us "homework" or things to work on with our daughter at home in between sessions.

1. One thing she recommended is to play games and make sure to win a few. This will let us see how our daughter reacts. We are to teach her to say "congratulations! good game! or good job!" instead of her common reaction of pouting and wanting to quit. Learning to take turns is also important for kids with AS.

2. have the child practice role play of coming into a room and saying "Hi. My name is ________. What is your name?" And when someone says "Hi. How are you?" Instead of just answering "fine" we need to teach our child to respond with "and how are you?" and then to wait and listen to the response.

3. Encourage them to maintain eye contact with all conversations.

4. Practice carrying on a conversation and encouraging the child to stay focused on the topic we want to talk about without looking away or trying to change the subject.

Speech Therapy Evaluation

We had one round of evaluations for speech therapy and they want us to go back for a second, more in-depth evaluation next week. Our insurance will not pay a penny toward speech therapy so we are not yet sure what this will cost us financially.

We still have not told our daughter about Asperger's and surprisingly she is not asking questions about all the doctor visits. Her younger brother is full of questions about why she is going places and what she is doing there, but she just goes along, seeming to enjoy it all!