Sunday, January 16, 2011

Wherein I write a book about autism

My guess is that unless you live in a completely child-free world you are at least somewhat aware of the neurodevelopmental disorder known as autism. If you are a parent of a child under the age of two, chances are you've probably freaked at some point over something your child does that seems a little atypical, because the words "autism" flashes through your mind. If you work in the field of early childhood education, as I do, you are obviously aware of the disorder. Autism is on the rise. For years now the rate of autism has been 1 in 150. Just last year the CDC revised the prevalence rate for autism to 1 in 110. That means that if your children are in a mid-sized elementary school, there is going to be at least a couple children in that school who have autism, if not more.

Since I started working at Heartland Programs in August of 2006, I have worked with five children who have been formally diagnosed with autism or one of the other four disorders on the autism spectrum (Asperger's or PPD in my case). I have also had three other students who I would be my salary on as being somewhere on the spectrum, based on their behavior and symptoms they demonstrated. 

Autism is still such an unknown disorder. No one has discovered what causes autism. Regardless of what certain celebrities say, there is no cure for autism. There are interventions that can be beneficial to a child with autism, and can help a parent or educator to minimize their symptoms, but there is not a magical cure. Specturm disorders manifest different in every child. Some children never speak. I worked with a child my first year at Heartland that did not speak. Some children are very delayed in speaking. Some children abhor physical touch or eye contact. Some children self-stimulate (stim) by hand flapping, rocking, jumping or twirling. These children are a little easier to pinpoint. And some children have less severe symptoms. They talk, they learn at a typical rate, but they just can't quite figure out social situations or body language. A child with autism can be very challenging to work with, and I can only imagine the struggles that their parents face every day.

As I said earlier, autism is on the rise. There is much debate in the medical and scientific community over what has caused this increase. Some say it's just that we have become more aware of the disorder, and symptoms that were once attributed to a child being MR are now being classified as autism. Some say it's new toxins in the environment. And some say it's from mercury/thimerosal in vaccinations.

The vaccination/autism link has come up again in the news very recently, due to Dr. Andrew Wakefield's study on the link between autism and vaccines having been proved fradulent. This is not necessarily brand new information, because Wakefield's study from 1998 has been under investigation for well over 3 years now. If I remember right he was struck off the medical register sometime last spring. I did several research papers focusing on autism during grad school, and autism is a personal interest of mine, so I've been keeping up on the information. A lot of the reading I have done is professional research. Obviously Wakefield has proven that even professional literature can be untrue, and it's always important to look at the sample size and makeup before you take findings at face value. But I do put a lot of stock in research, especially over my friend Google. You can find some wacky information on the internet if you're not careful. :)

Through my reading I found overwhelming evidence over and over and over that there is not a proven link between autism and vaccinations, even the MMR that everyone focuses on. The whole mess of Wakefield's study being found fraudulent makes me sad. I'm sad for all of the parents of a child with autism who felt like they had an answer. Who felt like they had something to hold on to, something to point the finger at and say, "This is what did this to my beautiful baby. This is what changed our life." It's a tragedy that Dr. Wakefield published a study that was full of holes that most believe now was for financial gain, and it's a tragedy that no one caught the fradulence behind the study before it was published. Where was the board that reviews research papers then?

If Dr. Wakefield truly did engineer facts for his own gain, then it angers me that so much time and energy has been spent since then trying to replicate the study to prove or disprove his theory. Time and energy that could have been invested in finding the true cause, or finding new interventions to minimize the symptoms. As Paul Offit so eloquently put, "We are more compelled by our fears than our reason." I am sickened to think that this man may have struck fear into so many parents hearts just out of desire to make money.

Now. All of this being said, I have done a somewhat delayed vaccination schedule for Raegan. I did a lot of research. I knew the facts. And I still chose a delayed schedule. I would like to think that it wasn't fear that compelled me. I believe in the need for vaccinations. I also believe that some children have reactions to vaccinations. Some hypothesize that there is something in the biological makeup of some children that causes them to be more susceptible to things that would not cause harm to the majority of children. Such as vaccinations. Although the incident is small, some children do have reactions to vaccinations. When Raegan was 6 months old, she had four shots at her 6 month well check. She ran a slight fever. That's a pretty common reaction to vaccines, so that didn't concern me. But she absolutely was not herself for the next day or two. She was irritable, she didn't sleep or eat well, and she wasn't Raegan. That was when I decided to start breaking up her vaccine schedule.

I appreciate that our pediatrician is well aware of which vaccines are live virus and their schedule is such that Raegan would never receive two live viruses at the same time. I looked at the CDC's schedule, and I looked at our pediatrician's schedule to figure out what I wanted to do. Raegan has still gotten all of her vaccinations within the range that's considered necessary by the CDC. Our pediatrician usually gives the vaccine at the beginning of the range, so I break them up so that she gets one vaccination a month. For example, the CDC's range for the MMR is 12-15 months. Raegan got it when she was 14 months old. Two months after our pediatrician's schedule, but still within the range. The only vaccinations that I will not get her are the flu shot and the varicella (chickenpox). I know from experience with Zane and myself that we are no more or less sick the years we get the flu shot. The flu shot is kind of a crapshoot, really. Developers try to predict what strains of the flu will be most prevalent that year, and that's how they make the vaccine. And with chickenpox, children build a better immunity to the disease if they actually have it. Of course, chickenpox is a lot harder on a child the older they get, so if Raegan is 7 or 8 and hasn't had it yet, she'll get the vaccine then. I am blessed to have a pediatrican that hasn't argued with me. I know there are some out there that will belittle parents for making this choice. Mine never questioned my decision, which I am thankful for.

I do want to wrap this up by saying this. I believe in research. But I also believe in parents and their knowledge of their child. I believe that there are some children out there whose biological makeup does not react well to environmental factors, be it vaccines or something else. And there is much more to vaccination related injuries than just autism. There have been some other really serious adverse reactions to vaccinations.And how do you know if your child is the one with the ticking time bomb inside of them?  So by no means in this post am I belittling or demeaning any parent who choses not to vaccinate their child, or who chooses a delayed or very delayed schedule. At the end of the day, you have to do what YOU feel is the best for your child and your family, just I did what I thought was best for my child. I just hope that people will be able to take their focus off of Dr. Wakefield and focus their passion on finding the cause of autism. And a cure.


Just Passing Through said...

Bravo. .. .well said. . . and well done!! I am so awed by you and proud of you!

Olivia Arlene said...

I agree that each parent needs to make the decision that is right for them and for their child/children.

I did not realize that Dr. Wakefield's research was found to be fraudulent. That really is too bad. However, I do still believe that there might be a link between vaccines and Autism and I do believe that there is a biological link as well.

My question is this, if it's not vaccines that is causing the tragic and rapid rise of Autism, then what is? I do hope there is an answer and possibly a cure soon! To me it makes sense that vaccines would be the cause just because vaccines and the amount that are given have been on the rise right along with Autism.

Anyway, this was a well written post! Thanks for sharing!

Shannon said...

Whew! I'm so glad you didn't take offense, Olivia. I was hoping that I was making myself clear that everyone should decide what's best for their own family. My condemnation is reserved for people who potentially hinder progress being made in autism research. :)

I've read several studies that show that subsequent siblings in a family that already has a child with autism are more likely to have autism also, and that the likelyhood of twins both having it is higher than non-twins. It is so obvious that there is a biological component to autism - if only they could figure out what it is. My completely non-professional theory is that some children have the biological makeup that predisposes them to autism. Something comes along that triggers that little time bomb in them, be it vaccinations or too much bacteria in their gut from the food they eat or something their mother did while pregnant or something in their immediate environment. But like I said, how do you know if your child is the one about to explode? So at the end of the day, you have to do what you know in your heart is the right thing to do.

Ugh. Being a parent can be kind of scary sometimes!

Olivia Arlene said...

No, I am not offended! At first my decision to not vax had a lot to do with the possible Autism link, but it also has a lot to do with the possible link between vaccines and MS (which my mom has) and I wonder if there is a biological link there as well and I wonder if myself and my kids could be more at risk for MS. Obviously there is no way to really know for sure.

It is hard and scary being a parent sometimes. Especially when you feel like you are doing the right thing and then you get "attacked" by others who think that you are doing the wrong thing!

I just think that every parent should do the research and make an informed decision regardless of what that decision is. Too many parents just do everything their doctor tells them without question.