I’d rather have an autistic child than a dead one!
I see that response every few months, and I’m surprised each time I see it. I’ve never made that statement myself, but it will sometimes take my breath away while I’m reading or replying to online conversations about autism and vaccines. Usually written by someone who has declared themselves pro-vaccine, I always find it an odd thing to say. I’ve found that the people who say it tend to be quick to dismiss opinions other than their own. No matter the topic, dismissing another’s opinion limits the opportunity for a productive back-and-forth dialogue. Differences and odd statements aside, online convos about vaccines and autism are already known to be quite lively.
Prior to stating that they’d rather autism versus death, as I recently heard someone say, the person has also just adamantly asserted that vaccines don’t cause autism. They can’t. Not wanting for their child to succumb to the measles, or whatever illness the media is perpetuating, they’ve insisted on the MMR vaccine for their child. Led to believe that their child will die from the measles, they really, really want that vaccine, especially because that one doesn’t cause autism. I won’t argue with their right to choose to vaccinate, but I can’t help but shake my head when their comeback, even though they didn’t need one, is “I’d rather have an autistic child than a dead one!” Wait. What? They just said vaccines can’t cause autism, so why on earth would they say that they’d would rather an autistic child than a dead one unless they actually do think that the MMR vaccine can cause autism? Besides being a tad rude, their comment doesn’t make sense.
I know that when that emotionally charged statement is made in a conversation, the person doesn’t want to hear anything else from me. As the mom of a child with regressive non-verbal autism, whose autism is a result of a vaccine injury, I’ve exhausted them. I want to tell that other person that I’d rather they long for a typically-developing healthy child and hope that they would never have to think about making such a tough choice of a dead kid or one with autism. When they add that to the conversation, it’s almost like they are saying they feel like they have to pick the lesser of two evils. No one should have to do that.
I’ve learned that if I want to keep the convo going, though, I can’t just blurt things out like they end up doing with their “autistic over a dead child!” retort. When I hear that said or see that left in a comment online, it’s an immediate conversation stopper. Once it’s been uttered, I know I’ll soon quietly, but confidently, walk away from the other person. I’ll generally have said all that I needed and wanted to say at that point. I know that even if they wholeheartedly disagree with me, which is their right, I’ve at least had the chance to plant a seed. They can’t believe absolutely in the science of vaccinations as they do and also acknowledge the anecdotal evidence that I’ve provided. Hearing from me, a parent who walked away from the vaccine industry, sometimes is too much for them to handle. For them to admit that vaccines could be anything but safe and effective would go against everything they’ve been told to accept as true. Since we, at one time, were in agreement, I have made sure to tell that other person that I, too, believed only positive notions about vaccines. No way could they have done what they actually did to my kid, right? But they did. My son was a thriving baby, met his milestones, and was very playful. But then, an unexpected vaccine injury happened. Lost, confused, and in denial, I had no idea what to do.
When I begin to share Ronan’s story, I’ve been known to also share my own story. I give information that I never knew I needed to know as a young mom. In our conversation, before it has the chance to sour, I make sure to pepper in facts about the US vaccine program which includes pointing out that all vaccines come with risk and that US vaccine manufactures cannot be held legally responsible for their vaccines. It was disturbing for me to discover that over a decade ago. I know it still is for parents who are only learning that fact now.
As unbelievable as those last few points are, I do my best to end things on a positive note with whomever I’m speaking or writing to, especially if they are of a pro-vaccine persuasion. My intent is not to change their mind but to offer a perspective, albeit personal, that they are overlooking. Occasionally, the person I’m communicating with respects what happened and agrees with why I have made the choices I have had which included walking away from the vaccine program. More often than not, though, and especially lately with the media fueling so much vaccine misinformation to the public, the other person is incapable of wrapping their heads around my choice to leave liability-free vaccines behind. Even though I’ve just shared a good deal of information, to include how vaccines contributed to my child’s autism diagnosis, they don’t know what to say and retaliate instead, Well…well…I’d rather an autistic child than a dead one! I don’t think they’d really wish for their child to fall onto the spectrum. I didn’t wish for that in my early parenting days and don’t now. I would, however, wish that I could’ve avoided the medical problems my child developed post-vaccination. Without those, life would surely be different than it is today.
My child went from typically developing, to sick, then sicker. I would never wish or hope for anyone to lose their speech, to physically regress, or for their cognitive ability to diminish as happened to Ronan. Autistic or dead! I would wish for so many different things instead. I think about adding a response, but when that off-the-cuff remark comes out, I know it’s time to agree to disagree. Maybe they don’t understand it well enough, but autism isn’t some choice. It isn’t just quirky behaviors and a different way of thinking either, which I wonder if that is what they envision autism to be. A simple definition tells us that autism is “a developmental disorder of variable severity that is characterized by difficulty in social interaction and communication and by restricted or repetitive patterns of thought and behavior.” (Dictionary.com) In my experience, it’s anything but simple. My son’s medical and special educational files supports that.
Autism is inflammation. It’s gut dysbiosis. It’s food sensitivity, sensory issues, and obsessive/compulsive disorders. Depending on who you survey, it’s more than that, too. It’s lack of speech, lack of sleep, and lack of appropriate communication. It’s hours of intensive therapy, it’s medication trials and errors, and it’s struggles and frustration. An autism diagnosis, like the one my son has, is complicated and it’s not a gift. It is nothing we’d ever consider celebrating. So, when a person tells me that they would wish they’d have an autistic child in the way that they do, I’m baffled. Do they really know what they are saying, I wonder. Do they really wish for that? Not once can I recall ever hearing a parent of a child who now has autism wished that their child would have autism. Nor have I ever heard them say that they wanted them dead. I have only wished, and hoped and prayed, for a healthy child. I’m going to go out on a limb and say that a lot of parents would hope for that, too.
People who say they’d trade a temporary illness, like the measles, for a lifelong autism diagnosis, have little compassionate towards those of us who do have a child on the spectrum. I can think of other unpleasant replies I’ve heard over the years, but that one in particular really is the worst. It insults parents of children with autism, and dare I add that it insults those diagnosed with the disorder and those who identify as autistic, as well. I understand that those with higher functioning autism than my son has identify themselves very closely with autism. Some have said that they feel that they are the diagnosis itself. They are autism. But my son is not. He is Ronan. If I had to describe his characteristics and behaviors, I’d say that he is non-verbal and delayed, he is dependent, he is vaccine injured, and sometimes, he is sick.
While the descriptions of my child may sound sad for some people to hear, there’s an upside of who he is. Ronan is amazing! He is silly! He is a joy! He is a son, a brother, a cousin, a nephew, a grandchild. He is an inspiration and worthy of every effort my family makes on his behalf. We won’t identify him as a diagnosis, because he is so much more than a label. When you get to know him, and when you take time to hear his story and listen to how much he’s had to overcome, you’ll see that he is more than just someone with autism and vaccine injury. Not too many people like to hear about that vaccine injury, but it needs to be mentioned. I would trade the chance of a temporary illness, like measles, over that vaccine injury any day if I could. I truly would.
Cathy Jameson is a Contributing Editor for Age of Autism.