It's been the source of unnecessary controversy and drama in the Autism community dividing people who should have been able to support each other in the struggle to help their children find a new normal and live in a world filled with neuro-typical people. That's the worst of it. The division of a community, the controversy, the bitterness, and the diversion of support. It breaks my heart.
What am I talking about? If you're hazy on the details or if this is the first time you're hearing about the vaccine link to causing Autism being severed, here it is.
On February 2nd 2010 CNN reported:
Medical journal retracts study linking autism to vaccine
By Madison Park, CNN
February 2, 2010 1:29 p.m. EST
The medical journal The Lancet on Tuesday retracted a controversial 1998 paper that linked the measles, mumps and rubella (MMR) vaccine to autism.
The study subsequently had been discredited, and last week, the lead author, Dr. Andrew Wakefield, was found to have acted unethically in conducting the research.
The General Medical Council, which oversees doctors in Britain, said that "there was a biased selection of patients in The Lancet paper" and that his "conduct in this regard was dishonest and irresponsible."
The panel found that Wakefield subjected some children in the study to various invasive medical procedures such as colonoscopies and MRI scans. He also paid children at his son's birthday party to have blood drawn for research purposes, an act that "showed a callous disregard" for the "distress and pain" of the children, the panel said.
After the council's findings last week, The Lancet retracted the study and released this statement.
"It has become clear that several elements of the 1998 paper by Wakefield et al. are incorrect, contrary to the findings of an earlier investigation. In particular, the claims in the original paper that children were 'consecutively referred' and that investigations were 'approved' by the local ethics committee have been proven to be false. Therefore we fully retract this paper from the published record."
Now, the so-called "research" had been discredited and debunked for quite some time. It was already widely known that Dr. Andrew Wakefield was unethical in how he carried out his research and presented it. It was known that he fudged the so-called facts and essentially made up the results of the research. The entire article was his imagination. It just took a couple of years after it was proven for The Lancet to retract that article. That little detail is missing from the CNN article.
The pain and anguish that this man put parents through is unforgivable. How many parents just in the U.S. alone have been killing themselves over thinking they caused their child's Autism because they allowed their pediatrician or family practitioner to give their child the MMR vaccine? Or even any vaccine at all? Are you one of those parents?
The fact is that if your child has Autism IT IS NOT YOUR FAULT AND THERE IS NOTHING YOU COULD HAVE DONE TO PREVENT IT. We don't know the cause, but it's very likely that it's genetically based. There's a lot of evidence showing that it's inherited. There's also some likelihood that there are multiple causes that can trigger it... perhaps it's in the genes plus environmental factors play a role.
In our case, when I look back on it, my daughter showed signs even before she was born. She showed signs as soon as she was born before she ever received her first vaccination or had her first meal. I didn't know why, that it was Autism, but I recognized right away that she had sensory integration disorder. I didn't know what it was called then, but I knew she had it. She would shy away from sound and outside movements when I was still pregnant with her, and her little fetal self spent a lot of time near my back. She's had sensory processing disorder since birth, although we didn't know that's what it was called. We only knew she was very sensitive to textures, touch, smells, and sound. All of her motor skills were late.
When she was around 4 years old we discovered that she falls on the autism spectrum with Asperger's Disorder. It took us a while to figure it out, but when we did it seemed so obvious in hindsight. She is currently seven years old and she's made great progress with therapies, excellent teachers, excellent schooling, and patience. Lots and lots of patience. She has an amazing team of specialists and teachers in her school and we work very closely together to help her learn coping skills and methods of learning.
It's not easy, and luckily she's very high functioning. She's an amazing child and we're very lucky. I see the traits in her that are autistic traits in other family members and myself, that separately are just personality traits or other types of disorders (such as anxiety, sensory, and others) but they all "come together" in her as autism. There's no doubt in my mind that genetics plays a role. That's not to say that I don't put any stock in environmental factors. She appeared more shy until several major life changes took place in a short space of time when she was 18-24 months old. She went from being an easy-going toddler to a stranger with high anxiety and so many things going on that we had no idea what to do or where to go.
On top of it she had other medical issues that we had to look at thinking those things were at least contributors. We minimized her HFCS intake, her food dye intake, and discovered that she was lactose intolerant. This was after researching that some food intolerances can mimic symptoms of autism. We hoped that the signs of autism could be blamed on food intolerances and allergies. It helped dramatically, but what we were left with was still a child with virtually all of the signs of Asperger's Disorder. Her speech was early and then regressed. She cried a lot. She had severe separation anxiety. So many things. I posted about them right here in this blog. Extensively. I posted about all of it.
That long road led us to having her diagnosed by a child psychiatrist at just about 4 years old. It's been three years and while some things are easier, many things are not probably due to the fact that she's a growing person with growing needs and she doesn't understand all of them herself. Things are changing naturally, and many of those things are typical cake with autistic icing. Many things are easier to tolerate, but that's out of knowledge or understanding that it might be due to the disorder. It's still a learning curve for me as a parent.
What's tough is being the main care-giving parent. My husband is the one working out of the home right now, so when he's home and issues crop up that he needs to cope with I have to teach him in a short amount of time how to deal with things. He can get frustrated because she doesn't respond to discipline and social interactions the same way as her sisters. She gets upset or happy or sad or frustrated for different reasons than they do... and I've stopped getting frustrated about those things and started going with the flow. I've stopped trying to fix her, but work with her and give her tools to work with so that we can achieve Normalcy.
One thing I've learned as a parent has been that it's been beneficial to let my daughter in on the fact that there's a name for her difference. She knows she's different than her siblings and her classmates, and having a name for it reassures her. She's learning the language for it and teaching me how to relate to some things that she needs me to know. It's not easy, because explanations and details aren't easy for her. Social contact and interaction isn't easy for her. She's very sensitive, but it's not easy to have a long conversation with full sentences let alone eye contact.
She does best on days that my confidence is high, or at least when it looks like my confidence is high. But when she has a bad day, everyone has a bad day. When she smiles the sun is shining. When she's sad, everyone around her wants nothing more than to see her smile again. She's a very special girl, and she's a happy girl. You can even forget that she has Autism for a while. You shouldn't forget, because reality can come crashing down and smack you in the face (literally). Maybe I'm the naive one for not looking for The Cause, but I think I know what it is already... for her. I know what triggered the symptoms to worsen to the point that it was undeniable to ignore. It wasn't anything she ate or had put into her so much as a series of emotional disruptions the year we moved and had her baby sister. We spent two long years trying to figure things out. During that time I worried that I broke her with vaccines but then I also have two completely typical children. If vaccines were so horrible, why didn't they have Autism too?
And now we're working towards maintaining.
I will say one thing. I would rather know and accept the Autism than ignore it and be embittered. That's not to say I wouldn't kill to obtain a cure, but I don't believe that there is one. I believe that Autism is for life. I believe one is truly born with it. And I would rather spend my time with her as I do all of my children... teaching her to grow up to be a productive member of society. I just have to do it with a different set of skills and frame of mind. How am I going to do that if I'm angry and trying to find "blame" in the first place? There's nothing wrong with my child. It's just that Autism isn't the way you think.