Holidays with Aspie In-Laws

Family gatherings with the aspie side of the family can be extremely difficult for me. But with this newfound understanding of autism, I was able to approach a recent get-together with better understanding and less expectations.

I prayed hard prior to the event. Trying to figure out the best way to approach it all, I convinced myself to view it as going into another culture. As a missionary has to learn the ways and customs and language of another culture, so I had to realize that the aspies in the family are an entirely different people group even though they look the same as everyone else.

This meant that I remember in this culture the people will likely not volunteer to help with the dishes or other chores. They will probably not show any interest in my thoughts or health or anything about me. I will likely not be considered at all. And so I take the role of the servant, helping and working, all the while attempting to carry conversation by asking questions (otherwise all they do is stare at the television the entire time).

Christians are commanded to consider others above themselves and to serve and love one another. Well, in this case it's all one-sided, but whether they obey the commands or not, I am still called to!

It's always painful to be around the aspie side of the family, but this time was better. Lower expectations and a focus on serving others (without expecting any hint of appreciation or thoughtfulness in return) made it easier to get through. I am so grateful for knowledge of autism and asperger's. It is a huge relief to believe they are not hateful, selfish people who don't care two straws about me--they just don't know how (and it never enters their minds) to communicate otherwise.

When the Aspie Doesn't Respond in Conversation

For many years I have struggled when my aspie spouse totally ignores something I have said to him. I may make a comment or ask a question and get absolutely no response. No nod, no glance, no verbal acknowledgement that I have spoken or that I even exist. My angry response to this is usually "Could you treat me like I'm a human and acknowledge that I'm speaking to you?!" Ummm . . . no, he can't. He doesn't think about it. He doesn't think about it at all. He sometimes doesn't think about me, at all. OUCH.

After searching asperger's forums I found that I was not alone in this. Aspies don't always know how to respond, so they simply don't. Especially if the discussion is heated, if the tone is emotional, or if he is distracted.

I've been pondering the command to repay evil with good, and to bless and not curse enemies when they hurt you. It's important to distinguish the evil from the person. My husband is not evil, and is not an evil person. The 'evil' that hurts me so much here is the autism, which honestly, he cannot help.

Another example is with a female relative of his who does not respond to my efforts in communication. I have written snail mail, shared photos of the children, emailed questions, and shared things about our family. Typically I get zero response. Not even a reply via email to specific questions I have asked. I sometimes say "I'm not sure your email is getting to you as I've sent several with no response." And then I ask the question again. When she does (rarely) respond to my questions, she responds with short bulleted answers. There is no greeting, closing, or personal word (not even a signature of her name at the bottom of the email). This used to be a slap in the face to me. Every effort seems to be in vain to try and build a relationship with her. She must hate me and not want anything to do with me, I would think. But then this understanding of autism surfaced. Now I am determined to keep trying even though I get nothing in return.

This 'evil' is painfully hard to handle. How am to I respond to this sometimes 'evil' aspect of autism with good? I need to be understanding, compassionate, encouraging. I need to keep my tone level and unemotional. I need to be patient and wait much longer than is considered reasonable to an NT for a response, patiently asking again if I really need an answer. All of which is impossible in my own strength. But God's grace is perfected in my weakness.

And these are very, very, difficult lessons to learn.

Biblical Counseling and Asperger's Syndrome

As my Asperger's journey continues, I am finally finding a few truly helpful answers to my nearly overwhelming struggles. Recently, I received an abundance of counsel as I sought help from Biblical Counseling. (If you are unfamiliar with that term, it refers to the branch of Christian counseling that is nouthetic and seeks to direct counselees directly to the Bible for answers to their problems. You can go to http://www.nanc.org/ and then click on the right sidebar to find a counselor in your area. Sometimes the counsel is provided free of charge through a church, though not always.) Biblical counseling can be painful, but I believe it quickly gets to the root of most problems so that the counselee gets the true help they need.

I will start with posting a few of the resources that have recently made the strongest impact on me. Maybe I can elaborate further another time.

*In dealing with the anger, pain, and bitterness I have experienced in relationship to the aspies in my life, the most help has come from reading (and re-reading) Lou Priolo's booklet "Bitterness: the Root that Pollutes" http://www.prpbooks.com/ This is a small pamphlet-type booklet that is packed with gems that will convict, challenge, and give you clear direction when facing the most difficult of situations with the most difficult people/enemies in your life.

*For Christian wives of aspies, please read "The Excellent Wife" by Martha Peace (Focus Publishing). It's not an easy read as it seems more like a biblical commentary than a marriage book, but there are chapters on living with a difficult husband that will help you turn your depressing thoughts toward more godly thinking.
*For husbands of aspies, the complementary book is called "The Exemplary Husband" by Stuart Scott. I haven't read it, so if you do, please let me know what you think. I suspect it will help you to love your difficult wife as the Bible commands you to do.

*For biblically parenting a child with Asperger's, read "Finding Your Child's Way on the Autism Spectrum: Discovering Unique Strengths, Mastering Behavior Challenges" by Dr. Laura Hendrickson. Dr. Hendrickson is a biblical counselor, a former psychiatrist, and the mom to an autistic son. If you are familiar with "Shepherding a Child's Heart" then you will understand what I mean by saying "This is like Shepherding an Autistic Child's Heart." A great little book!


Most of these can be found on Amazon.com.

Does he want a wife or a STEPFORD wife?

Forgive the negativity, it's been a rough day. A day that has me wondering . . . Do Aspie males want a wife, or do they want a STEPFORD wife?

Seems that any (okay, maybe any extreme) show of emotion-- be it happiness, sadness, or whatever, is met with criticism. Would he rather his wife be a robot, agreeing with him in all areas, smiling and head-bobbing at everything life throws her way?

Does he not want a human, emotional, normal woman to be his spouse? One who can sometimes be ecstatic or depressed? One who wants, even needs, him to respond to her with at least an expression of understanding?

I'm throwing up my hands in utter confusion.

It's been a rough day.

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!

Brutally Honest (can be a good thing)

Aspies are often characterized as brutally honest. Yes, there are times that this is downright painful. But it can also be a very good thing.

I love that I can trust my husband to tell me the truth (even about things I may not want to hear). I have never doubted his loyalty, integrity, or honesty. I know these characteristics are qualities of a godly, mature Christian. They are also commonly attributed to people with Asperger's.

Whatever the cause of such positive traits, I am deeply thankful for them!

In Sickness and In Health

Another illness hit me recently, which meant another time of being painfully ignored by my aspie spouse.

My young son asked "Are you okay Mom? I hope you feel better! I love you!" and he gave me a hug.

My spouse acted perturbed that my illness messed up his plans for the day. He didn't once ask how I was feeling or if he could bring me anything.

As I was crying and praying and reading the Bible, I thought of the solemn vows I took before God to love this man for better or worse, in sickness and in health. I have always thought "of course I'll love him when he's sick . . . I'll take care of him!"

I had never before thought how hard it may be to love him when I am sick! But I vowed to do just that.

Man, is it ever hard.

Our church teaches that the Bible allows for divorce in the cases of adultery and abandonment (and of course, physical abuse). But I do not believe being ignored when I am ill is Biblical grounds for divorce.

So if I can't run away . . . I need to face the situation I am in, and face it as a Christian should. I believe God is sovereign, so He is in control and has ordained every situation I face for my good, that I may be sanctified/made more like Christ. (Romans 8:28) He put me in this asperger marriage, and has a plan for my good. I am called to be loving, to persevere in the faith, and yes, even to be thankful during the worst of times as well as the times that are better.

I frequently send up a quick but sincere plea . . . Lord, help me!

The Asperger's Movie, "Adam"

A great movie for any adult who is familiar with Asperger's Syndrome is the newly released independent film, "Adam". The trailer may seem like a funny romance, but if you have Asperger's in the family, this will hit home and may hit hard.

As accurate a portrayal of AS as I have ever seen on film, parts were so disturbing that I cried. This is not a movie for children, but you may want to buy the DVD when it comes out to share with friends and family! Those more likely to watch a movie than read a book will come away with a more clear picture of life with Asperger's Syndrome.

Lack of Empathy/Empathic Response

There are many strengths an aspie can bring to a marriage. And, honestly, more often than not all is well with us! But when illness strikes and say, for example, my spouse comes home to find me coughing, congested, and moving slowly due to aches and pains, I expect an empathic response. My toddler hears me cough and says "You okay, Mommy? You okay?" But my aspie spouse may not even think to ask "How are you feeling?" once throughout my illness.

This can be extremely depressing and upsetting. I try to remember that it just doesn't come naturally for an aspie to have the typical empathic response. But when I am sick or weak and am not offered any help or emotional support I tend to be filled with grief, anger and self-pity at how lonely and uncared for I feel.

I don't know how to properly react during such times. I sometimes say "It hurts my feelings that you haven't asked how I'm feeling." He then feels guilty and/or criticized. I wonder if I should continue to do this. Will it one day 'stick' that a simple "how are you" could actually make me feel better?

Recently I heard a sermon on loving your enemies. The pastor said that sometimes our enemies are in our own families. (That seems a strong word to apply to a spouse, but sometimes lack of empathy, no matter what the cause, can honestly make you feel as if you are with an enemy rather than a friend!) The pastor said we are not to curse and be angry with our enemies but are rather to love and bless them. Interestingly enough, this was followed up with the pastor saying "The Bible requires empathic response. Be happy with those who are happy. Be sad with those who are sad." I almost fell out of the seat. :o) I can't change my spouse, but there is One who can and I need to pray about this!

But what am I to do during the hard times? As a Christian I know I must turn to the Lord to meet the needs that my spouse can never meet. Christ is the perfect friend, spouse, and comforter. He knows my pain and can heal it.

This "Hymn of a Hurting Heart" helps me to keep the right perspective.

I need Thee, How I need Thee.

Help me love and bless my aspies.

When no empathy is shown me

You will meet my every need.

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.

Asperger's in the Family Tree

Well, I must warn others not to make the mistake I made as a new-to-Asperger's parent. Don't let the in-laws think that you think this comes from their side of the family.

Yikes.

I tried to be careful. I tried to very sensitively ask if some of the symptoms I'm reading about are seen (by anyone else besides me) in members of the extended family. What I got was not "Wow. Yeah! That explains a lot of the struggle I've had over the years with so-and-so." There was no "So that's why no one in the family has ever been close!"

Nope.

The reaction was anger. There was no grasp of the value of understanding family members better. There was no embracing of the goal to communicate with others better through this knowledge. It was "No! They don't have Asperger's Syndrome! They just have a lack of communication with others. That's very hurtful that you would suggest that. You should just accept how they are without analyzing them."

So, once again I feel like like I am going insane. I feel like an alien for wanting to communicate better, for wanting to be close, for wanting understanding in relationships with my in-laws.

I guess it was helpful in one way. It makes me believe that even more members of the family than I had thought have at least a shadow of Asperger's. I will continue my quest to learn how to communicate effectively and well with adults who have AS as I am finding that I know more aspies than I realized!

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!

Social Functioning Impairment

One diagnostic criteria is "clinically significant impairment in social, occupational, or other important areas of functioning." In clinical terms, the doctor told me that someone would have to be unable to keep employment or a family in order to legally classify as having Asperger's Syndrome. (I guess so the system of disability payments would not be abused?)

But Stanford (in "Aspergers and Long-Term Relationships") points out that this criteria may be evidenced in the impaired relationships with extended family. This may be seen in the aspie rarely reaching out to them, or having little desire to be "close" with siblings, parents, or other members of the family.

"Aspie Memory"

In "Asperger Syndrome and Long-Term Relationships" Ashley Stanford says it's possible that a person with AS doesn't remember much from his past. This could be because there were many stressful situations and he has "shut out" those difficult memories. But it may just be that most of his "aspie memories" revolve around objects instead of people. He may forget about parties, holidays, and other occasions most NTs tend to remember.

Aspies and Relationships

So far the best book I've read to help me relate to and understand adult aspies is "Asperger Syndrome and Long-Term Relationships" by Ashley Stanford. I needed to see the practical examples she offers for some of the medical lingo to make sense.

The most difficult thing I have encountered in relationships with aspies is stated by both Attwood and Stanford:
"Aspies are less able to learn from their mistakes."
Liane Willey described it by saying "Trials and tribulations will not become lessons learned, they will simply be memories that stand on their own with little relationship to anything other than the day they occurred."

This characteristic of "Weak Central Coherence" explains why the same argument comes up over and over and over again. The aspie doesn't apply the answer to a particular problem that has been dealt with in the past to a similar but slightly different scenario. It's like a whole new scenario being experienced without being able to apply the solution learned in the past. Stanford acknowledges that this was a serious struggle in her life until she tried to see a bright side to it. She now tries to view each (same old) argument as a fresh opportunity to try to find a way of communicating that works best with her aspie spouse, and to find a solution that makes the most sense to both parties.

How to Communicate With an Aspie

Tony Attwood's book "The Complete Guide To Asperger's Syndrome" has been the most helpful book about Asperger's that I have read. It is current (2007) and comprehensive in scope. In the chapter on Language, he gives tips for conversing well with an aspie.

1. Avoid figures of speech.
2. Have a brief pause between your statements if discussing emotional issues or talk slowly about such things.
3. Be very clear without relying on subtlety.
4. Allow the aspie time to think of a response without rushing them to answer.
5. Do not feel uncomfortable if there is lack of eye contact.
6. Make facial expressions clear and consistent with the topic.
7. Avoid sarcasm and teasing.
8. The aspie may need assurance that you understand what they are saying.
9. Understand that the aspie may not know how to respond to praise or compliments.
10. Do not be offended by the aspie's blunt honesty.

In "Asperger Syndrome and Long-Term Relationships" (the best book I've read on aspie relationships) Ashley Stanford lists some ways to effectively use "Aspie-speak":

1. Don't generalize.
2. Be direct, honest, and clear.
3. Go straight to the main point--eliminate meaningless words.
4. Don't go off on a tangent.
5. Don't assume anything!

She says "a few generalizations may send even a simple conversation into that netherworld of incomprehensibility."

Signs of Asperger's (in my daughter)

The following is a list of some of the reasons we believe our daughter has Asperger's. We have a consultation scheduled with a specialist in Autism Spectrum Disorders in a few days and will proceed from there. Taking this one step at a time.

Our daughter:

*Has many collections of small items organized neatly in her room (cards, shells, small toys). As a two year old, she would line up small objects on the edge of her crib. We've always thought that was cute, but are now beginning to wonder if it's a part of AS.
*Talks about her 'best friends' but is avoided by her peers.
*Has odd, rigid ways of carrying herself; stomps when walking; doesn't know what to do with her hands; has no sense of another's personal space.
*Has meltdowns when she gets frustrated; seems unaware what others may think of her behavior.
*Has odd tones of voice; high-pitched, monotonous, or repeating phrases three times in rapid succession.
*Will make blunt, rude comments about how others look and not realize she was being rude.
*Takes things literally.
*Occasionally repeats the last word of someone else's sentence; will sometimes say "you're welcome" instead of "thank you" to a compliment.
*Is highly sensitive to smells, temperature, and textures (will only wear cotton knit clothing).

These are just a few of our concerns. For years we have thought she was badly behaved, immature, and would outgrow these behaviors with time and instruction. But we know that none of her younger siblings do these things. The most difficult observation of late is realizing that her peers are beginning to stare and even laugh at her. These observations along with recent episodes of odd behavior have made us seriously question if there might be a neurological component to what we are seeing in our child.

Signs of Asperger's

There are many sites which list various signs and symptoms of Asperger's Syndrome and it's been helpful to google and study as many as possible. I repeatedly read that because this is a spectrum, a person can have some but not all of the symptoms and it can be in varying degrees per person. I've also found that because AS runs in families, "you probably don't have to look far into the family tree to find AS."

Some symptoms listed By Mayo Clinic staff

Signs and symptoms of Asperger's syndrome include:
*Engaging in one-sided, long-winded conversations, without noticing if the listener is listening or trying to change the subject.
*Displaying unusual nonverbal communication, such as lack of eye contact, few facial expressions, or awkward body postures and gestures.
*Showing an intense obsession with one or two specific, narrow subjects, such as baseball statistics, train schedules, weather or snakes.
*Appearing not to understand, empathize with or be sensitive to others' feelings.
*Having a hard time "reading" other people or understanding humor.
*Speaking in a voice that is monotonous, rigid or unusually fast.
*Moving clumsily, with poor coordination.
*Having an odd posture or a rigid gait.

Praying for Wisdom

There have been many times over the years that I have struggled to understand my spouse. Disagreements that ended in tears (for me) would puzzle me. If only I could understand what was going on. . . I just couldn't put my finger on why things had to be so confused and confusing. Why can't he understand how I'm feeling? Why does he get so frustrated if I ever disagree with him? How can this man who loves me, walk right by me when I'm crying?

I often pray a general plea of "HELP, Lord!" But until recently hearing a sermon on the book of James, I had not faithfully prayed specifically for wisdom. James 1:5 says that if anyone lacks wisdom, let him ask God (who gives to all men liberally) for wisdom, and wisdom will be given to him. But verse 6 says he must ask in faith without any doubting that he will receive wisdom. And verse 7 says the man who doubts will not receive anything.

A few days after praying that prayer for wisdom, I began researching Asperger's for the first time. Some would believe this to be a happy coincidence, but I thank God for answering my prayer. Now I must remember to keep praying for wisdom as this journey continues.

What Do All These Abbreviations Mean?

I currently only know a few of the abbreviations, but will try to add more as I learn them.

AS = Asperger's Syndrome
ASD = Autism Spectrum Disorders
"Aspie" = affectionate name for someone with Asperger's
HFA = high functioning autism
ND = neurological disorders
NT = person who is neuro typical or "normal"
PDD = pervasive developmental disorders

And I Believe My Husband is an Aspie, too

While I only felt relief that we had likely discovered the root of our daughter's problems, the more I read about Asperger's, the more convinced I became that my husband is an aspie, too. Several (though not all) of the symptoms describe him perfectly. So much of what I read explained the cause of each of the major difficulties I have faced in our marriage over the past decade. There have actually only been a few difficult areas, but they run deep and come up over and over again. I've heard that many couples have the same One Big Fight manifested in different forms. Now I believe ours may all be classified under "AS"! I have a wonderful, loving, kind, and hardworking husband. AS or no AS, I would marry him again a thousand times over and would never want to be married to anyone else. I love him with all that I am and thank God for bringing us together.

But relief over the diagnosis for my child turned to grief over the diagnosis for my spouse. The emotions are almost too complex to process. The more I read, the more things "click" and the harder it is to realize that the things that are hardest for me to handle may not ever, ever change because at it's root, maybe it is not a sinful behavior issue after all . . . it's a neurological disorder. Maybe he really, truly, honestly doesn't get it when he hurts my feelings by his lack of empathy, and he actually cannot understand my point of view. WOW! Talk about a lightbulb moment for me.

In the midst of processing the grief, there is comfort in knowing that when we come to understand what causes a certain behavior, we can then deal with it. I can study and approach the disorder knowledgeably and then dwell in a more understanding way with the hardships that come from it. I wouldn't trade the strengths of his characteristics of AS for anything. I love and admire his focus, determination, deep interest in topics such as religion and politics, organization skills, and how hardworking and successful he is in his career. There is much to be thankful for.

But in these first weeks of discovery of Asperger's in my family, the hardest part has been how alone I feel. My husband jokingly admitted at first that he had some of the symptoms, but the more I read and pointed out, the more he withdrew. He is not admitting that he has AS, he is not researching it yet, and is obviously uncomfortable at this point discussing it with me. So who can I talk to?

I have searched forums and found it common for NT (neuro-typical or "normal") spouses of Aspies to bash their AS husbands. It is unhelpful and discouraging for me to read such discussions. Yes, if your husband has AS, you will suffer to some degree from the hardships it causes in a marriage. And physical abuse certainly warrants immediate separation. But where are the Christian wives who love their non-abusive AS husbands and want to help them? Where are the ladies who can empathize with my emotions while also urging me on to deeper understanding and respect for my husband?

That's why I'm starting this blog. I certainly don't have the answers. I don't even know all the questions to ask at this point. But it will be a journey of faith, of love, of trial, of growth. I'm blogging to share that journey with other Christian women who find themselves going down this path. I'm there right now, and I want to remember the struggle so I might be able to help someone else down the road. If you can encourage me in your comments, please do. Please share sites, articles, or anything that will help me, and help me . . . to help them.

She's Not Outgrowing This After All

For years we've struggled with our daughter's odd social behavior, odd tones, odd mannerisms. She says and does things that come across as immature, rude, and obnoxious. My husband had often commented to me over the years that something must be wrong with her but I always dismissed it. I was frightfully shy as a child but I "got over it". I kept telling him she would outgrow this and we didn't need to worry.

But I was shy. I was not oblivious to what others thought of me. I would cower and not speak. She is the first to volunteer to be on stage at children's shows, completely unaware how she comes across. She makes odd noises, doesn't know what to do with her hands or how to carry herself, has repetitive speech, has no sense of another's personal space, and desires friends but is avoided by her peers.

A friend had once told me a little about Asperger's. My daughter's latest meltdown led me to google the term. This started the whirlwind I've been in the past few weeks. Once I began researching Asperger's, we saw that almost all of the symptoms perfectly described our daughter. Our response was sheer RELIEF! We were just so relieved to finally understand there may be something neurological causing her to act the way she does. We have tried so hard for so long to get her to change her odd behaviors and nothing has ever seemed to work. We can learn how to help her now! We don't know what's ahead on this journey of life for our child with Asperger's, but we are looking forward to finding out all that we can.