The first thing I need to mention, and stress again and again, is something that never seems to get mentioned whenever this debate comes up. And that bothers me, which is why I'm writing this post. I've seen people screaming passionately at each other, that they know the answer about what autism "is," but I haven't seen anybody ever mention this: There are at least 2 different kinds of autism. There is Infantile Autism, where they are born different and there is Regressive Autism, where they develop normally until about 18 months and they suddenly lose all the progress they've made. The second kind is often combined with some kind of gastrointestinal issues, although they both can be. Why doesn't anybody ever mention this? Well, I don't really know, maybe a lot of people do and I've just never seen it; I don't read about this topic very often because of all the emotional strife it creates for all involved. I think we tend to assume that "our" autism is "the" autism, and anybody whose experience has been different surely isn't talking about anything we can relate to.
So! Having said that, here is some more:
Do I think Child 1's autism was caused by vaccines? No, I do not. Child 1 has infantile autism; he was born that way. He missed pretty much every single milestone there was to miss, except for sleeping through the night, which he did at 3 weeks, and he never had any adverse reactions to any of his shots. He also does not have any of the gastrointestinal issues that are so common with autistic children. And for the record, both of my kids are fully vaccinated and up to date on everything.
Do I think there's a connection between vaccines and autism? Yes I do, although it would be more clear for me to say I think there's a connection between one type of autism and vaccinations. Because even though my experience has not given me any personal evidence, I've heard way too many stories from parents that sound the same: "He was fine until the day he got his MMR, then he developed a fever that lasted for a week, he lost all of his language and he's never been the same since." There's a connection there. No, I don't know what it is; maybe it's some combination of a genetic pre-disposition and the stuff in the shot, I can't tell you more than that, I just very strongly believe that there is a connection.
I was talking about this post on Facebook and struck up a conversation with a mom who does believe that her child was harmed by vaccines. I asked her to write up her experience so that I could post it here:
From birth we had this beautiful alert child who was content to be cuddled and was very easy to live with daily. He was a engaged child that wanted to be cuddled and played with constantly and he preferred even when sleeping to be with us. We all thought it was funny that everyday he and his Daddy would nap together (son sleeping on Daddy's chest) on the couch. At an early age he started to talk and we would go down the road and he would point out and say " mmm, I cream or Izza Izza". He would get so excited by going to Kindergym and singing the songs with the other child and was easily the entertainer when we went to family parties.How many of you reading this, right now, can say your story is similar to what I've quoted above? Tell me in the comments, because I have a number in my mind and I'd like to see how accurate my guess is.
Our journey into the solitary world of Autism began around 15 months. After our child had his vaccinations at 15 months of age he developed a high fever, malaise and cried a lot. The site where they gave the MMR and DTAP were swollen, red and hot. After a while he recovered but we started to have issues with him having repeated illnesses such as ear infections, yeast infections and upper respiratory infections. Overall he seemed less responsive and would sit for hour playing by himself and stopped making eye contact. At 18 months like a good mom I took him back for his check up and he got all in one visit Hepatitis B, DTaP, IPV and Varicella injections. Again, by the afternoon, he was cranky, cried inconsolably and ran high fevers with the same skin responses. It was at this point in his life that he started to lose speech ability, started becoming obsessed with playing with things that where not toys instead of his toys, such as the tubing on the vacuum, and he would put objects in and then let them roll out, over and over again. We took him to our local ENT and he recommended having his tonsils removed and did an emergent referral to our Early ON for his loss of language. I can still remember this 6 month time of his life as clear as it was yesterday because it is like we lost him to another world where we could see him but he was only really with us physically. I can say that 6 years later things are better but everyday still breaks our souls when we see how affected he is socially by his differences.
My autism story isn't nearly as dramatic: As a baby he hated being around too many people who were talking at once and would cry until I removed him from the situation. He made great eye contact, though, and liked to be held. He babbled on time but crawled and walked late, and when he wasn't actually talking by 18 months I started to worry (actually I started to worry from day 1, but you know what I mean....) The rest, as they say, is history.
Am I suggesting that parents not get their kids vaccinated? OH MY GOD NO. Absolutely not. Like everything in life, you have to play the numbers; weigh the consequences against the risks, and the odds of your unvaccinated child getting measles is higher than the odds of your child regressing because of a shot. And in the end? Measles can kill; autism cannot. I'd rather have an autistic child than a dead one; and so would you.
Then what's my point? My point is, as follows: In my opinion there is enough anecdotal evidence out there to make a hugely convincing case that more research is necessary. Nobody can ever make a truly rational argument that "not trying to learn more about something" is ever the best way to go, despite what you predict "might" happen as a result. Hell, maybe Regressive Autism isn't actually autism after all, it's another condition entirely that mimics the symptoms of Infantile Autism, in which case OKAY! That's what that is! So let's find out.
Say what you want about Andrew Wakefield, and we all know there's a lot you can say about him, but when he inspected the stomach cells of the children in his study, did he find the measles virus in there? Probably somebody is going to tell me that he didn't, but honestly I'm not interested in all the extenuating circumstances involved, or however else anybody wants to talk about how horrible a person he is. I'm not his biggest fan or anything, I just want to know if the measles virus was actually found in the stomach linings of those children: some have said yes, some have said no. Wakefield raised questions and in my opinion there have yet to be any conclusive answers. Frankly I'm tired of hearing about the studies that once again "prove" there is no connection between the shots and autism, because how do you explain that to the mom I talked to? How do you explain to her exactly what happened to her child, if it wasn't the shots? You can't. But you also can't just dismiss her personal experiences simply because yours were different. There is very little science knows about what causes a child to regress for seemingly no reason, and this mom (and many others) want answers.
And in the end, while our stories stories are different, what's most important is that regardless of "type," the end result is usually the same: people living with a complex developmental disorder significantly affecting verbal and nonverbal communication and social interaction, emotional regulation and sensory processing abilities. It is this similar "end result" that makes us fight about this so much, after all, if you didn't follow the same path that I did, how can you possibly be in the same place I am? (I don't really believe that, I'm just saying it as an example). But we are in the same place (more or less), and that's why this issue is so volatile. I'm not saying I have any answers, I'm saying there are too many questions that need explanations, and until we can all be satisfied with concrete scientific results, that can give people like my friend up there an answer to her questions, this debate will go on and on and on and on.
As autism parents and autistic people, we need to get past this divide. We need to move past the Wakefield debate and just accept that our experiences have been different. We need to stop fighting with each other and start working together, because despite everything, we have a common goal: the happiness and well being of every autistic person, regardless of the journey they've taken to get where they are.
