New autism rate - so many questions

On the front page of our newspaper this morning I see an article - CDC says 1 in every 88 children has some form of autistic spectrum disorder.  1 in 88.  This is HUGE!  How did it get to this?  When Gabe was diagnosed the estimate was 1 in 150 kids - and that was alarming many.  This new number is almost twice as many children.

I do know that now we see it and diagnose it earlier.  When Gabe was diagnosed the doctor told us, "You know, if this were 20 years ago he just would have been diagnosed as a genius with quirks."  I have no doubt that this is part of the reason it is diagnosed more - but I personally believe it is more.  Much, much more.

I recently read a study about the Amish community and allergies.  This study showed that this population has few severe allergies.  The study went on to state that they thought that this was due to these kids being exposed to these allergens since birth.  The Amish community doesn't have all these antibacterial soaps, they are less likely to get an antibiotic when ill, they are out there in the elements more and are exposed to more natural allergens and pathogens.  This is what this study thought was the cause of this.

Now - part of this could just be genetics.  The Amish population has way less cancer and heart disease rates.  They also have a lot fewer cases of Autism.  The government puts this rate as 1 in every 300 children in the Amish community as having autism - other studies I have seen puts it as 1 in every 10,000 children.  Any way you look at this the rate for the regular population is at least 3.5 times higher than it is in the Amish population.  They really are God's people or we are doing something wrong.  Every government official and pediatrician that you talk to will bet their career on vaccinations not causing autism - I have spoken to several of them and they always discredit the Wakefield study, and state with a great deal of passion that there is no link between autism and vaccinations.

Well - I graduated from Purdue in '99 in human nutrition/dietetics.  I would like to think that I did well in school (had a high GPA when I graduated) and I actually learned something.  I began working for a health department in '02 after the birth of my second child.  I did my best to specialize in pregnancy and pediatrics in college - so working for a WIC/MIHP program was a perfect job for me.  I did nutrition counseling for pregnant woman and children from birth to 5 years of age.  We lived in a very poor community - so I saw a LOT of kids in my 8 1/2 years at the health department.

In the beginning of my practice I didn't see any cases of children diagnosed with autism for at least a year.  The same was true with severe food allergies.  Now I would she an allergy where the child would get sick on milk - but not those life threatening allergies.  I did see one sad case though - met this family my first month at the health department.  They had a little girl who was developing normally.  A healthy young 18 month old.  Talking, walking, laughing, sweet and normal 18 month old (mom was pregnant when I first met them).  The little girl was charismatic and sweet.  Then something happened.  This sweet little girl suddenly regressed.  Started having seizures.  She lost her ability to talk, walk, even eat (had to be tube fed for the rest of her life).  Watching this little girl disappear really haunted me.  It took a while for them to diagnose this little girl with something - but eventually she was diagnosed with Rhett's syndrome.  The same week this little girl was diagnosed with Rhett's my own son was diagnosed with PDD-NOS - both of which are forms of autism. 

I had heard bits about vaccinations causing autism from people I thought of as "crack pots".  Like the good first time mom I was I took my son in and did everything the doctor said needed to be done.  He had his vaccinations on schedule.  I even had people ask me if the vaccinations caused my son's autism - my answer was always, "No.  Gabe was autistic from birth."  And that is the truth.  He did not regress.  He developed with autism.  What I did notice though was that around 12 months he started having other issues - eczema, non-stop diarrhea, his already small sleep schedule became nonexistent.  When he had his 12 month shots he became sick.  He had never reacted to any other vaccination - he didn't even ever cry with any of them - but this 12 month round really took its toll on him.  That was when his normal stool turned to diarrhea.  That was when the eczema started.  Seven days after that vaccination he developed a fever (nothing really high - just 100-101) and this strange rash all over his body.  I took him back to the doctor - our pediatrician took one look at him and said, "Wow, he has the measles."  That was also when the ear infection began - one ear infection that never went away and had him on one antibiotic or another for the next 14 months of his life.  Something happened to my son at 12 months to trigger some sort of an immune reaction that caused him to have the rash and the diarrhea.  Something. . . .

The longer I worked the more cases of autism I would find.  Most were like Gabe - that way from birth - but there were those regressive forms.  Those regressive forms scared the heck out of me.  I watched my second child like a hawk - always having the little girl with Rhett's syndrome in the back of my head.  When Gabe was diagnosed I was even more paranoid. 

The longer I worked the more cases of severe food allergies I would find.  One young boy I followed almost died when he was 2 because his sister sat next to someone at school who had milk at lunch and then came home and hugged him.  She didn't touch the milk - she didn't eat or drink milk - but her being next to this girl at lunch and then coming home and hugging her brother almost killed him.  Every year I was seeing more and more of these life threatening food allergies - from families where there was no family history of food allergies.

When Gabe was 3 I decided to try something experimental with him.  To be honest - he was diagnosed right before he turned 3 - but because of when his birthday was and when the school year ended we were told that the 0-3 team wouldn't help us - we had to wait until fall and be re-tested by the 3-5 team and see what services they offered us.  Personally I refused to wait 4 months to try to help my son - so I started reading - and reading - and reading (and getting more depressed because some of that stuff your read seems really hopeless).  In my reading I had read about a gluten free/casein free died - I blew that off as being crack pots.  All these crazy homeopathic people - in my mind modern medicine was the key - but the more I read and the more I actually spoke to our doctor the sadder I was - there was no form of treatment to help him.  That GFCF diet looked more and more viable - but how could I take a child who hadn't gained a pound in a year and a half, stopped growing in height, and was already an extreme self-re-stricter of food and put him on this kind of a diet.  Heck - the only think he consumed was cheerios, cottage cheese, milk, mac n cheese, blueberries, and chicken nuggets covered in gravy.  Everything on that list except for the blueberries would have to be eliminated.  He would starve to death!  My husband and I discussed it and discussed it - we decided to just remove the casein.  That seemed like something we could do easy enough.  We honestly didn't think it would help any way - but it wouldn't hurt - not in the short term.

We pulled everything that contained casein out of his diet.  That night was the first night he ever slept 8 hours in a row.  He had no night terrors either.  OK - maybe it was a coincidence.   The second night he slept 10 hours - no night terrors!  He stopped screaming about the "bugs" that he always felt crawling on his legs.  One month on the casein free portion of the diet and he was sleeping normally and his agitation was gone!  We added the gluten free portion.  By the time he was re-tested in September most of his autistic traits where gone.  The eczema and diarrhea were gone as well.  His appetite was back and he had actually gained 5 pounds.  The doctor was convinced that he had celiac disease - so he sent us to a specialist.  In order to test for Celiac the doctor stated that Gabe had to go off the gluten free portion of the diet - which we did for 30 days.  Diarrhea came back.  Eczema came back.  His ability to hold a conversation regressed to where it was before we started the diet.  His ability to tell the difference between hot and cold, hungry and tired - all went away.  The tests came back that he didn't have celiac disease - and it took us six months of having him back on the diet to get him back to where he was before we went off the diet.

Where am I going with this book?  Something happened to Gabe - something immunological happened to him to cause him to no longer tolerate these foods.  This happened right around 12 months - for that is when it started.  That was the same time he had his 12 month vaccinations - which 7 days afterwards he came down with the measels.  I do not believe the vaccination caused Gabe's autism - but I do believe those 12 month shots and over use of antibiotics did something to my son.

Fast forward four years - I am pregnant again.  We were on the fence about having them vaccinated.  In Michigan - if you have one vaccination you have to have all of them.  You can't claim religious exemption if you start them.   I had heard more and more info about vaccinations and autism - most of which I honestly didn't believe.  What worried me more was the kids I saw at the health department.  Another little girl who was developmentally normal suddenly around 12 months of age started having seizures - and she two regressed to the point of being tube fed.  The first little girl I followed, the one with Rhett's, passed away.  Food allergies were everywhere - something was going on.

A public health nurse hunted me down when she heard I might not vaccinate the twins.  She gave me this big long speech about vaccinations and why I should get them.  In that speech she said something that I will never forget.  Something I researched it and she was correct.  She stated that that after an immunization the body's immune system jumps into hyperdrive and you become super immune for the next 30 or so days.  Children are less likely to catch any illness during that time because their immune system "wonderful" during that time.  That really got me thinking.  I immediately thought of the children with type 1 Diabetes - how it is caused (in most cases) by an immune response to something.  Something triggers it - a illness most of the time - and it becomes life long.  The illness doesn't cause type 1 diabetes - but it triggered it.  What if the vaccination is the trigger for some of these kids.  Some of these "normal" kids - who would develop typically if there wasn't some sort of trigger.  Like in your house - say it isn't wired properly.  Something just isn't connected the way it should be connected - but under normal use you never know - there is never an issue.  Then one day you get an electric surge for one reason or another - lightening storm - surge from the power company - something - and that portion that isn't wired properly gets over loaded and you blow a fuse - or worse - your house burns down. 

What if this increase in food allergies that we are seeing, these increases in autism cases - what if they are caused by vaccinations?  It isn't a component of the vaccination that causes it - it is the way your body reacts to it - that hyper immune response triggers it to "burn down". 

Go back to the Amish population - they have a lot less cases of autism than the general population - severe food allergies are almost non-existant - and most Amish families don't vaccinate.  There was a decent Amish population in the area I lived in.  Vaccinations aren't against their beliefs, they just generally don't do it.  A couple of months ago when I heard that study about the allergies and the Amish population my first thought was this, "Of course they don't have the allergies we do - they don't have that vaccination trigger to cause their immune system to go crazy."  And yes - allergies are a histamine response - which is an immune response.  The new research in autism is that there is a major auto-immune component.  Why then does every person in the medical community so believe that these things could NOT be caused by vaccinations. 

So yes - autism is up to 1:88 children.  This is only going to get worse.  Everything out there to help these kids is to deal with the symptoms - speech therapy, occupational therapy, play therapy - but what is really going to help is to find a cause and a way to prevent it.  Is it the vaccinations - maybe.  Is it the food that we eat - maybe.  Is it the fact that babies are spending time propped up infront of the TV instead of being interacted with - maybe.  Is it poor genetics - maybe.  But instead of yelling, "There is no way it could be vaccinations," and "It is only like this because of better diagnosis" why not find out why this is happening and do our best to prevent it.  If we don't and things keep going the way they are than in 10 years it will be 1:44 kids - 20 years it will be 1:22 kids - and 30 years it will be 1:11 kids who has some form of spectrum disorder. 

Raising "normal" - the begining.

I have had several people tell me over the last few years that I should blog about my kids - the things they do - the things that come out of their mouth.  I have always wondered who would want to read about my boring life - I admit that my kids crack me up at times - but besides my kids I am the most boring person on the planet. . .

Well - for lent I gave up Facebook (for the most part - I admit I have gone on when it wasn't a Sunday here and there - but I always feel guilty about it).  Facebook is my addiction - I know it - so I thought it would be a great thing to give up.  Two weeks into lent I realized Facebook was more than just my addiction - it was my social life.

To make a really long story (that I had typed but just erased because I don't want to bore you all in the first post!) as short as possible - in my personal non computer life my best friend was my Grandma.  I could, and for most of my life did, tell her anything and everything.  She was never judgmental.  She was always loving and kind.  I always felt better after just talking to her.  The last few years Grandma's hearing wasn't what it used to be but I still gathered so much strength from just holding her hand.  I never had a lot of friends - never needed a lot friends - I always had Grandma.  Well - April 11, 2011 my beautiful Grandma passed away.

Then we moved from northern Michigan to Tampa, Florida.  All I have to say is that northern Michigan is nothing like Tampa (specifically FishHawk - the suburb we live in).  I really don't feel like I fit in here - I am who I am - it took me a long time to accept that I am not "normal" by Michigan standards - then we moved down here and as abnormal as I was in Michigan you could multiply it by 10 as to abnormal I feel down here.

So - I gave up Facebook - I only have one neighbor and a couple of parents at the twins VPK that I talk to - and my Grandma is gone.  Well, I don't want to sound pathetic but I am lonely and I need someone to talk to (and my husband works crazy long hours so I rarely have time to talk to him and really don't want to unload on him since his job keeps him busy.)  I need to unload my rants.  Thus the world wide web gets my written diarrhea. . .

Raising "normal" - where does that come from?  "Normal" - what the heck does that mean?  The web defines normal as "Conforming to a standard; usual, typical, or expected."  I have never been normal - and I have hit a point in my life where I don't care if I an normal or not.  Then we go to my kids. . . so I am not normal - my husband would never be confused with being normal - and then we had four kids.  You can guess how normal our kids are. 

My oldest - Gabe - is in middle school this year and his drive to fit in is amazing.  I can't tell you how many times I have told him that normal is boring.  Everyone is messed up in the head in one way, shape, or form - some people just hide their messed up ness more than others.  Embrace your difference - you don't want to be normal. . . I don't want to be normal. . . .for the most part I don't want "normal" kids - I like who they are.

Add to this the fact that we life in FishHawk - and here 90% of the people you meet are "perfect" and "normal".  The public school has a uniform policy.  All the kids here are "yes sir" and "no sir" kids.  The kids go to school with perfect hair.  I think I am the only one in this area that has ever had acne.  The teeth are white and perfect.  All these pretty people with their pretty smiles.  All their "perfect" kids.  All the perfect yards.  They open their car doors to drop their kids off at school and their cars are perfectly clean - I am betting their houses are just as clean.  Then their is us.  My kids say what they think (I have told them, "If you don't have anything nice to say please don't say anything at all" but they say what they think.)  My youngest has been known to be profane at times.  I open my van door to drop the kids off and garbage falls out of the van.  Knock on my door and there is a good chance that at least one of my twins will be naked.  We have been known to blow things up in the back yard for fun.  My kids have seen poverty - the know that bad things happen everyday to great people - they know sadness - they know the world can be a cruel place.  My kids are creative and free thinking.  My house is NOT spotless and I live by the motto, "My house is clean enough to be healthy and dirty enough to be happy."  We are what we are.

So here we are - in the middle of "Stepford" - living our lives the way we do - living around all this normal.  With that all I can say is what the hell is normal anyway and why would anyone strive to be "normal."  Most of these "normal" people I meet don't look all that happy.  Their kids don't look all that happy.  So here I will be raising my kids in this "normal" world - and doing my best to make them not feel abnormal.  I would prefer our crazy, profane, naked world any day to the "normal" world of perfection!