Friday, April 17, 2009

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.

Thursday, April 16, 2009

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.