Monday, August 31, 2009

Did You Watch Nightline Last Evening?

I wanted to throw bricks at the TV.

Perhaps if I explain my own personal views/opinions on autism, you, fair reader, will understand why I wanted to throw bricks at the TV.

Ok, this is complicated, but since I'm the parent of at least one, if not three (still waiting on official diagnosis, but I know what I know) kids on the autistic spectrum, I've been around the block, read a thing or two and have lived with the realities for the past fifteen years or so. And I thank God that my kid's symptoms are on the very mild side of autism (Schizphrenia excepted which isn't autism, but which mental illness is found at a higher rate in the autistic population than the "normal" population).

The question someone posed to me on facebook yesterday was whether or not I thought autism is caused by vaccines. Hmmmm. How do I answer this?

Since I'm not a doctor, or a scientist, all I can do is share my own experience in this teeny tiny laboratory that is my own family.

At our house, only ONE of our children got their vaccinations on schedule, and that was our oldest and worst affected. The other three all received delayed vaccines, starting when they were two. The only one of our children to have very strong autism spectrum symptoms is our oldest. Score one for a vaccine connection. The others' symptoms are milder and more subtle, but there nonetheless. And I do wonder whether, if they had been vaccinated on schedule, they would be more severe. I'll never know.

Now, my husband is an un(officially)-diagnosed self-identified Aspie as well. So, score one for genetics, eh?

And here's the kicker: We never had a moment, after a vaccine when we felt like our child "went away" or was lost to us. Score one against vaccines being the cause.

Rather, the signs and symptoms sort of grew slowly over the years or were always subtly with us, and have gotten slowly worse over the years.

B was the kind of baby that never took a nap on her own. She was very difficult to settle. I nursed her until she was three. Even at that age she was already talking in a very high pitched voice with a funny accent. At the time, her tantrums seemed age appropriate, but they lasted for years beyond what would have been normal. I thought I was a bad mom. I was being told I was a bad mom. That I needed to discipline her better.

B was very precocious and was reading by age 3. Hyperlexia is a symptom. So is bedwetting, and that runs in families doesn't it? There are so many things that I just dealt with, and didn't run to the doctor about, that many moms would have. In so many ways I was isolated and on my own, without support. And by the time B was a pre-schooler, I KNEW she was different enough from other kids that I was afraid to send her to school. I felt like she would get diagnosed as ADHD (very popular at the time) which I instinctively felt was the wrong diagnosis. I remember saying that I did not want her to get "pidgeonholed". So we started home schooling but then I was too sick and exhausted to make that last, so she was put in public school. Because she was so smart academically, she never even got an IEP even though it was discussed, whether or not she should. To make a long story short: When B was in 3rd grade we had her evaluated by a psychologist, who said: "She's on the spectrum but I wouldn't call it Aspergers". For some reason, my brain was so focused on "whether or not she has Asperger's" that I did not even HEAR the "she's definitely on the spectrum" part of the evaluation. Duh, me! Fast forward three years when the pyschosis started and I kept pushing for an Aspie diagnosis from the psychiatriast, who finally gave me one, but I think his real assessment would have been what the psychologist had said: On the spectrum but not apsie. Now that I am aware that two of my other kids DO fit the aspie bill better, I tend to agree. Spectrums are strange things and no two kids are alike.

But the thing that makes me think that Dr. Wakefield is on to something is that I don't think I knew what a normal diaper ever was. And I did not realize that my kids' poops were not "normal" but now that I read up on the subject, I realize that they never were...things were too squishy, too loose. Couple that with constant butt rashes, and well, I think the gut has a lot to do with autism. But I never ever made the connection at the time.

The actual work of Dr. Wakefield is the work of a gastroenterologist. He found that when he started examining the guts of kids with autism that they had gut disbiosis. Dr. Wakefield gives it a name: Autistic Enterocolitis. And the AAP, or whomever was cited by Nightline, says Autistic Enterocolitis does not exist because it's not "in their book" of official diagnoses. Well, that's a circular argument. Sort of like, before the mid-nineties Fibromyalgia "did not exist".

When Dr. Wakefield examined the intestinal lymph nodes of these autistic children, what he found was the measles germ. Loads of it. And the presence of this in the gastro-intestinal lymph nodes DOES have the ability to create even worse gut disbiosis than was present before. Nightline barely touched on the gut-brain connection. The focus, to them was on vaccines which automatically translates into the mercury poisoning theory. And we all know that thimerasol has been removed from vaccines for years, and yet the autism rate still climbs.

But what if it's not the ingredients in the vaccine that is causing autism, but the vaccination itself: the introduction of the germs (using this term because I can't remember if it's virus or bacteria) into a kid's system that throws their intestinal flora further off balance? What if investigating the connection between thimerasol and autism is asking the wrong questions?

Another Doctor in England, Dr. Natasha Campbell-McBride cites Dr. Wakefield's work in her book: Gut and Psychology Syndrome: Natural Treatment for Autism, Dispraxia, ADD, Dyslexia, ADHD, Depression, Schizophrenia.

Based on her own research and medical practice, going along with the same theory on the illness that Dr. Wakefield has, Dr. Campbell-McBride has helped thousands of patients. And any time I see the terms Autism and Schizophrenia in the same place, I sit up and pay attention. The only other place I've seen it mentioned together was in a book called Breaking the Vicious Cycle by Elaine Gottshall. This book was saying the EXACT same thing about what the cause of mental symptoms are.

So, at our house, the gut disbiosis theory is one that is very much worth paying attention to.

And here's the kicker: As soon as we took Bethany off grains and put her on the GAPS diet, she stopped hearing voices. She's more conversational, more chatty, less stimming. She hits herself less often. She can focus on her school work. She's more cheerful and less depressed. In our family experience, there is something to this.

As a parent, it's my job to find what is working for us. GAPS is working for us and because of that, I would say that my take on Autism and Schizophrenia is that it is complex, that it has something to do with genetics, something to do with gut flora (which are shared in the family and passed along primarily from mother to infant), and that vaccinations play a role in the sense that they add more stress to an already stressed out system and can be the proverbial straw that breaks the camel's back.

I would LOVE to see someone do a study on the kids whose parents say they were damaged by the MMR vaccine to see whether there's any heightened incidence of occasions in these childrens' lives pre-MMR that might have contributed to gut disbiosis...such as antibiotics for childhood ear infections, or a mother with symptoms of systemic yeast infection.

But in my mind, it's all about: Who is getting the results and actually helping people to recover?

Nightline sounded to me like it was in the pocket of big usual. Check out the links and see what you think. And if you are a parent with a kid on the spectrum, I really really really urge you to look into the GAPS diet.

Now I'm going to go read more about Dr. Wakefield's work at the Thoughtful House in Austin, TX.


Hezra said...

I did not watch the nightline segment, I do have a child who HAS to be on the spectrum. We did see a drastic change after his MMR. But also he was odd and different even at birth. It was crazy to figure out because he is the first to come to us by adoption so genectics are unknown on his b dads side. I think you are right in that the pieces are so intricate and so interwoven. And it seems the media likes to focus on one thing then people just lump it all to vaccines and don't look for further answers. the gut seems to be an amazing connection I hadn't thought about. I homeschool too. I know if this kid were in school he would get a diagnosis and yes, be labeled forever. . . anyway, I would like to follow your blog and get to know you? my email,

elizabeth said...

sounds like you are learning a lot. not easy, but I am glad you are learning it. Lord have mercy.

Coffee Catholic said...

My father-in-law was autistic. But he was never diagnosed ~ back in the day they just doped you up or stuffed you in a mental hospital. So when I came into the family I was like, "This guy is such a jerk!!" He drove me NUTS! But as the time went by I started to get to know him and I said to my husband, "Your dad isn't a jerk. He's autistic."

All we could think was how much this old man had suffered since childhood and at the hands of the medical establishment. My FIL would prattle on, telling stories of how his mother didn't like him and this or that... it was sad to hear. (You didn't have conversations with him. He just talked.)

I'll admit, I'm worried about if any of our kids will have autism. I think your ideas make sense ~ the various factors working together, including vaccinations messing with gut flora.

I know that our baby Elspeth being vaccinated did her no favours! She ended up with a chest infection at 11 weeks right after getting her shots! 11 weeks! And the poor thing, already suffering horribly from colic, was on antibiotics. We were not impressed.

Laura said...

I think, that just like autism is a "spectrum" of disorders (symptoms, really) that the causes are probably much more complex than vaccines or intestinal differences. Perhaps someone who has a particular genotype might be more likely to develop autistic like symptoms if they are prescribed certain medications or have their vaccines according to the traditional schedule which could somehow trigger a response which leads to autism. Maybe their symptoms would be less severe without the vaccines...who knows really. It's also possible to run into kids who haven't had any traditional vaccines and who still carry the diagnosis of autism.

What I wish people would focus on is the people behind the diagnosis. They are often very special wonderful individuals who go unnoticed because they are seen as a diagnosis. Yes they are different. Yes they have a hard time fitting in in the neuro-typical world, but we are doing ourselves no favors by disregarding what these individuals add to the world and our experience of it. Those of us who do not exhibit the spectrum of symptoms that comprise an autism diagnosis need to stop pigeonholing these individuals. We need to let go of our all too American ideal of sameness and acceptable behavior. There is more to life than being hard as it is, and we don't always do these folks a favor by forcing them to fit into "our" world. Just my opinion, of course. I am not a parent...but do care for many children with autism.

My prayer, and I speak as one who works with preschoolers diagnosed with autism, is that we can begin to appreciate and love these individuals and stop seeing them as "autistic."

God bless!

Alana said...

I think a diagnosis can be very helpful in helping parents know what they are dealing with, and how to parent their special kids.

A diagnosis can be helpful in getting a child the medical attention or services he/she might need.

Beyond that, it's just a word, and I'm certainly not an advocate of "fixing" or "curing" the lighter side of autism.

However, if I had a child who did not communicate at all, or who smeared poop all over the wall, or something like that, I would be all about doing everything I could to "make things better". God have mercy and grant the parents of the severely autistic strength and grace.

Laura said...

well...of course it allows you to get services when needed. And kids can't smear poop on the wall. But, in my experience that kind of behavior isn't necessarily related directly to autism. There is usually something else going on.

Saponaria said...

Great post. I didn't watch the show though. I am the mother of a son on the spectrum and possibly on it myself. None of my children have received any vaccinations. I shudder to think what my son might be like if we had vaccinated him and on schedule.

He was different from the beginning. But I didn't know what I was looking at. He had digestive issues from very early on. Runny mooshy stools, constant rashes that would cause his little skin to bleed. But it always seemed so random. I couldn't pin it on any one thing. We discussed possible celiacs with his ped but I didn't want to do any invasive testing.

I tried GF/CF and it did nothing. I can't even remember how I ended up with the Breaking The Vicious Cycle book now. This was in 2004. We find it right after his diagnosis at 2.5. A diagnosis that shocked me because while I knew he was different autism was not on my radar.

But within 5 days of being on the SCD I had a new child. For the longest time I was afraid this little boy would slip away. I never knew how distant he was from us before then. After the SCD the bowel issues disappeared. We got to talk to him for the first time in his real voice. Before that it was only the high pitched squeaky one and the growly one. But he interacted. He pointed. He asked for things and he quickly potty trained!

This was all when he was 2..just shy of 3. He's a great guy. 8 now. We are back on the SCD now after only being GF for 3 years. I just took him to a naturopathic Dr who did not know of his dietary past. The major thing that showed up was his body reacted horribly to all grains and starches. I guess this is a for life thing. I am so glad I knew what to do. I know for me there is a strong relation to my own gut health and diet and my mental well being.

I wish more people would be willing to change their diet rather than just search for drugs. I think there is a very strong gut connection for my many people and their mental health. But so many are not willing to even try.

The White House said...

I absolutely agree with you, Alana, in that there HAS to be a gut-brain barrier. Increase in toxins (i.e., huge increase in quantity of vaccines, greater reliance on plastics, more preservatives, etc.) is clearly causing greater damage, as evidenced by the dramatic increase in the number of spectrum cases DIAGNOSED. And you and I both know that for every case that is diagnosed, there are easily probably AT LEAST two to three cases that are undiagnosed.

I do know that the difference between baby J and ds Z, the next youngest, and the one autism diagnosis in our family, is great. He had all of his vaccines up until (and not including) his 18-months, which would have included his MMR. J has gotten no vaccines. She is SO much healthier, generally speaking, than any of the olders. Never more than a sniffly nose, and here she is ten months. We did notice a casein intolerance when she was bitty and had her put on Neocate, and she has thrived on the GFCF formula, organic and whole foods, and the craziness that is our house. LOL K, dd11, our dxed Aspie, and E, dd5 (tested via ADOS this year, normal range, but we are having some strange issues with her that may indicate CAPD), both received full vaccines. With E, however, I was unable to have many gluten and dairy products because of 24/7 morning sickness and intolerance. Those were the first things the doctor told me to avoid...and it helped. All of that to say, yes, I absolutely do believe there is a huge gut and immune system involvement in all of this.

Thanks for your post. Very thought-provoking.