Autism linked to OXPHOS metabolic disorder

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

Has your autistic child been screened for metabolic disorders?

NT/AS compared to NT/AL-Z!

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

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

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

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

Central Auditory Processing Disorder (CAPD)

Lately I've been reading about Central Auditory Processing Disorder.  CAPD is often a co morbid condition of autism, ADD, OCD, and more, but it can stand alone.  CAPD is diagnosed by an audiologist who utilizes a variety of testing methods.  First a hearing test must be conducted.  Then the auditory processing testing takes place in a sound-proof booth and includes listening to different words in each ear at the same time, distinguishing between those words as well as between words with slightly different sounds, trying to understand statements while also hearing loud background noise (ex., the sounds of a crowd of people babbling), and more. 

Some of the symptoms in children (as listed at  http://www.capdtest.com/ ):

Frequently misunderstands oral instructions or questions
Delays in responding to oral instructions or questions
Says "Huh" or "What" frequently
Frequently needs repetition of directions or information
Frequently needs requests repetition
Has problems understanding in background noise
Is easily distracted by background noise
May have problems with phonics or discriminating speech sounds
May have poor expressive or receptive language
May have spelling, reading, and other academic problems
May have behavioral problems 

It's possible that an adult who refuses to acknowledge autism or asperger's (and refuses to undergo psychological testing) might be open to being tested by an audiologist for an auditory processing disorder.   A diagnosis of CAPD could be very helpful in an NT/AS relationship.  Mutual understanding and acknowledgement of an underlying medical condition (especially one which could be contributing to communication problems) would be a step forward in a suffering marriage!

Attraction to Aspergers

Looking around with my new understanding of Aspergers, I find I am surrounded by aspies.  I have had relationships with aspies in the past.  And currently I can detect Aspergers in the family tree (both sides, I now suspect), amongst some of my friends, and scattered throughout members of my church.  This "being surrounded" is not by accident, either.  I believe I am attracted to people with Asperger's Syndrome.

I admire people who have high intellect and value hard work and loyalty.  Discussions of theology are something I can enjoy for hours on end, even when I don't get many words in myself.  Humor that involves puns and plays-on-words makes me laugh out loud.

So there.  I'm admitting it to you, and most importantly, to myself.  I like aspies.  I really, really do.

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.

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!

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.

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!

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.

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.