"Experts"

January 26, 2013-- "Waisman Center: A day with the Experts".  Here are my notes/thoughts/insights.

1. The brain is like a muscle.  Use it or lose it.  Our brains change with time; hence, the reason some children with autism develop seizures later in life and/or overcome/seem to "rewire" as time passes and with early intervention.
 
2. For 11% of people with autism there is a cause: Fragile X Syndrome, Rett's syndrome, Tuberous sclerosis.  For 90%, there is no known cause--yet.  They know that the brain is different based on MRI scans, and there are variences in DNA seen in autism.
 
3. 1% of children in the US are diagnosed with an ASD, 2% in South Korea.  Currently 1 in 88 children are autistic according to the CDC.
 
4. In 1992 there were 20 DOCUMENTED special ed children in WI schools.  In 2011, there were 8,885.
 
5. ASD's tend to be higher in families with a higher socioeconomic status (though some researchers say this is due to more access to diagnosis and treatment for this population).
 
6. Higher incidence of ASD's are also seen in preterm infants, advanced parental age (mom AND/OR dad over 35), 1st born children, short duration between pregnancies (<12 months = higher risk for an ASD), low birth weight babies, and possibly for those who have used fertility treatments.   These are not CAUSES, just trends.  One could argue that children who would have died under difficult circumstances, now survive with medical advances, giving another possible reason why ASD's have risen.
 
7. Current theories on why ASD's are becoming more prevalent are: 1) increased developmental screening, 2) expanded criteria/change in diagnostic practices for autism via the DSM manual, 3) increased awareness, 4) substituting labels--once "cognitively delayed" now "autistic", 5) dual "labels" i.e downs syndrome children are now tested for ASD's and some also receive this diagnosis. 
 
8. Immunologic basis to autism...?  I wish they would have touched on this more!!!  I couldn't help but think that while we were learning all the research/evidence based practices, what were holistic providers conferencing about autism?  How increasing vaccinations, our "contaminated" food and water supply, and drugs were causing autism, and how they could "cure" it with holistic medicine?  Could Aiden's chronic antibiotic use during his first 2 years of life damaged his immune system in some way?  I still believe that genetics PLUS environmental factors play a role in all this! 
 
9. Coming soon...May 2013 the DSM criteria for ASD's will change again (DSM 5).  These guidelines are supposed to be more stringent.  For instance, the person must have shown signs of an ASD before the age of 3.  Will this change prevalence rates????

 



Random

 

Therapy/School--I find myself overwelmed right now.  There are a lot of choices to make, and things that could change in just a few short months.  I've been praying to make the right choices for Aiden.  In addition to all the diet "stuff" I've been researching, pondering, and praying about, now I have to make a decision regarding Kindergarden for Aiden.  It sounds like WEAP will only take Aiden if he is available during the day.  I was so excited for Aiden to start Kindergarden, and now I don't know if he will be able to start.  Home school?  Are 1/2 day Kindergarden classes available?  Repeat EC?  He has made SO MUCH progress with just EC, that it seems counter-productive to take him out of the school environment completely.  Yet, I may have to if we can't find a solution.  I really want to go with WEAP, but we do have 2 other options--just not sure if they are going to be more flexible with scheduling or not.  I'm trying to take it one day at a time, but honestly, this is a tough spot to be in.

 

Nutrition/Wellness--Aiden had his well-check today.  I had some labs taken.  A basic panel, celiac screening, and vitamin/mineral check.  We weren't able to get enough blood for all of the labs today, but hopefully, we will get some framework of where Aiden is at nutritionally.  When I can afford to, I'd like him to take a daily multivitamin (I just ran out), Omega 3's (If I can find one he will actually take), and maybe a probiotic.  He still doesn't have any gut issues, doesn't seem to feel ill, or indicate that anything is bothering him.  However, he looks tired all the time.  He sleeps 9 + hours a night, so I'm wondering if his iron is low...?  I just don't want to see "the look" in his eyes anymore; it is a blank stare that indicates he isn't completely here...so hard to see that. 

 

 

Speech/Play--The more I pray, the more sentences Aiden says, and more he seems to "come out of it".  He played with playdo appropriately today.  He made a "hot dog" and cooked his "food" in the oven!  Maybe baking with Aiden is making a difference!  Normally, he justs sticks his toys in the playdo--in and out, in and out. 

 

I wrote down all the sentences Aiden said yesterday.  These are my "tender mercies" from the Lord.  I love it when he speaks!

 

"Can I see that?"  "Can I eat the...?"  "What is this?" "I'm so hungry."  "Daddy is mad" (he really was)!  "Austin won't share."  "I'm so scared."  (He was pooping his pants and didn't want to sit on the potty to do it.)  "That was fun Austin!" 

 

 

His words sound robotic and "scripted," but I love his sweet little voice, and I'm grateful for each new sentence!

5

Aiden is turning 5 next week!  Below is a review of our journey the past 5 years...

My pregnancy was normal, and without complications.  Aiden was born full-term.  The umbilical cord was wrapped around Aiden's neck when he was delivered, so he was taken away quickly.  We were told it was not uncommon for this to happen, and that Aiden just had a "slow start" (the words of his pediatrician).  We had to stay in the hospital a few extra days so Aiden could be monitored.  He received supplemental oxygen for a couple days.  After that, Aiden progressed like any other infant--maybe even a little quicker than some.  He sat up unsupported at 5 months, crawled at 7 months (I remember calling my mom the day it happened), and walked along things at 9 months.  He was walking independently at 1 year.  I remember distinctly that he waved "bye bye" at 1 year, and pointed at objects, people, and things.  Ironically, at his first year appointment, I remember the doctor saying that those things were "a good sign that he isn't autistic".  Strange that she would say such a thing.  Aiden said, "mom", "dad", and "ball" around 9 months.  At 18 months I began to realize that Aiden wasn't talking like children his age.  He no longer said words that he used to.  We were at a play date, and I remember a little girl talking to her mother.  She was younger than Aiden at the time, and that was my red flag.  At 2, the doctor acknowledged that Aiden was behind in speech.  We had his hearing tested right away (he did have a lot of ear infections), and started the Birth-3 program for speech therapy.  His hearing was just fine.  Aiden NEVER sat for any of the group activities during Birth-3, but he did well at snack time, and during one-on-one sessions with the speech therapist.  In the year that Aiden was in Birth-3, NO ONE ever mentioned a thing about Aiden having any other needs but speech.  When he transitioned at 3 to a speech program, things became clear that Aiden needed additional help.  The doctor, and the teacher began to "get it", while I still justified Aiden's actions (in my defense, he was my first child, and I was clueless).  Aiden didn't interact with his peers, and wouldn't sit for circle time.  He would lay on the floor, hit his head, play with blocks alone, but he didn't participate like the other children, and he needed a lot of redirecting and one-on-one help from the teacher's aide.  We waited forever for the Waisman Center, and I'll never forget the day we went.  After playing with him for a couple hours, the therapist confirmed that Aiden was indeed on the autistic spectrum.  Then she said, "I have no doubt that Aiden will live a full, complete life".  I remember looking at Abe and trying not to cry.  WEAP confirmed the diagnosis.  Aiden started Early Childhood shortly after that. 

Aiden has made tremendous gains in the past 2 years!  Aiden is doing much better with peer relationships (thank you Austin), and he is finally speaking in sentences.  They aren't always correct, and they sound "scripted" to me, but they are words.  Precious words.  There are just so many things we take for granted each day.  So, paper work filled out, books read, meetings attended, doors opened and shut, here we are 2 years later, finally off the waiting list for therapy.  Aiden will start therapy soon, and I can't help but wonder what our lives will be like, and what will become of Aiden after this; because really, this is all there is for hope other than my faith.  I sat with Aiden today, and as I hugged him, I said a prayer.  Please Heavenly Father, bless my son to overcome autism.  And if that is not your will, then let his light shine in his own way, that he may bless many lives for good.  He has already blessed mine so much.  Happy 5th Birthday to my sweet, special baby boy!  This is going to be a great year!

 

Facts

Early 1940's--Leo Kanner, a child pschiatrist @ Johns Hopkins University Medical School described 11 children with similar behavior characteristics: 1) social isolation/withdrawal, 2) communication difficulty, and 3) ritualistic behaviors.

Bruno Bettleheim believed that autism was the result of ineffective parenting.  He believed children found their world hostile and scary, so they developed unusual behavior.  At this time, children were taken away from their parents and put in institiutions.  Mother's were termed, "refridgerator mom's".

Early 60's--Bernard Rimland found that autism was due to abnormalities in the brain--NOT due to poor parenting (1964).  His son was autistic.

1960's--Ivar Lovaas from UCLA discovered that with behavioral therapy, children with ASD's could learn given a highly structured enviroment with rewards and punishments in a consistent manner.  His work continues to be used today in what is called ABA--applied behavior analysis--therapy. 

1970's--Children with ASD's were no longer taken from their parents.  Teachers were instructed on "behavioral techniques".  Parent's play an important, active part in therapy.

2000--Austim is thought to be a disorder of the central nervious system.  Some children with ASD's have abnormal levels of neurotransmitters--the chemical messengers that transmit information.  Many studies indicate a genetic component to ASD's, but researchers believe their is likely an environmental "trigger".  Although there is no clear pattern, children with ASD's have a higher likelihood that they will have a history of encephalitis, PKU (inborn error of metabolism), tuberous sclerosis, maternal use of cocaine, or anoxia (loss of oxygen).  Aiden had anoxia at birth, and was put on supplemental oxygen for 2 days.

1999--Thimerosol (the preservative that contains mercury) removed from vaccines for children.  It continues to be used in the adult flu shot.  No studies to date link autism to vaccinations, although many people and healthcare providers continue to feel there is a connection.

CDC 2012-- 1 in 54 boys will be born with autism.  1 out of 88 children will be diagnosed with an ASD.   

IQ tests are not good indicators for children under the age of 5 because they are socially and verbally biased.