In The Autism Community, Vaccines Can Be the Elephant in the Room
“Can’t We Just All Get Along?”
By Dena Penner
I have often been reminded of that phrase from back in the late 1990’s as I have begun to navigate a new and somewhat challenging road in our family’s life. My sweet, happy, affectionate, almost-three year old son was recently diagnosed with Pervasive Developmental Disorder-Not Otherwise Specified (known as PDD-NOS). This is a somewhat vague diagnosis, but is described as having some characteristics of being on the autism spectrum, though not enough to warrant a full-blown autism diagnosis. In my son’s case, this means that both his expressive and receptive language are delayed and his social skills are also somewhat behind for his age. And while there is debate as to whether PDD-NOS should be classified as an autism spectrum disorder, the reality is that my son’s symptoms are the same as those experienced by someone “on the spectrum.”
There are many unknowns with this diagnosis, and while the doctors can tell us much, I find that parents of autistic children are a huge comfort and source of information. Even though my son doesn’t have the sensory issues that are common in many autistic children, he has the same challenges with language and with understanding abstract concepts, and it is always helpful to hear of the experiences of other families. I have been amazed at how many people I have met whose children have some sort of autism spectrum disorder, ranging from the very mild to the more severe. I meet them on the playground, in our local coffee house, birthday parties and really just about anywhere that people with children gather.
But in these situations, there is always the “elephant in the room.” Will this parent I am meeting think that vaccination caused their child’s autism? This theory has been disproven many, many times but the idea that vaccines cause autism still persists. Do I respond that I have worked in the field of immunization for more than 12 years, and that I believe in the importance of vaccinating children according to the recommended schedule? Do I say that my son is fully vaccinated, and has never shown any signs of regression following vaccination? This has led to some awkward moments, where someone who had previously offered commiseration has pulled away from me.
I hate that I have to have anxiety when interacting with other parents, who have helped my husband and I to feel less alone, and more optimistic that our son will continue to progress. I have been humbled by the kindness of parents who immediately bend down to speak directly to my son, and who offer words of encouragement, “He makes great eye contact – that’s a really good thing” and “Oh, my child wasn’t doing that at this age. I think you have a lot of reasons to be hopeful.” They know which of our local public schools has the best support for children on the spectrum, and which classroom is likely too restrictive for our son. They tell stories of how their children went from non-verbal to being able to communicate. Most of all, they simply “get it” – they understand how hard it is to see your child unable to function like all of his peers, to fear that he will never be able to live independently.
Thankfully there are many parents of autistic children who know that vaccines do not cause autism. But I also understand the desire to look for a cause, the need to assign blame for something that is a daily challenge, and can be a daily sadness. Particularly troubling are some of the blogs and other online parent resources I have stumbled across, where parents place great energy into blaming vaccines for their child’s autism. I feel a pit in my stomach whenever I read these, and I feel overwhelmingly sad for the parent and their child. I can’t imagine the guilt that would come with thinking that you did something to cause your child’s autism. And I can’t help but think that energy would be better served in looking for a cure for autism, and in helping their child to achieve whatever they are capable of.
I confess that I often just hope that the topic never comes up. Because if it does, I have to state what I know to be true – I am certain that my son’s condition was NOT caused by his vaccines. I often joke that we have actually seen improvements in his language aptitude following his vaccinations. Perhaps his flu shot this fall should be credited for his new ability to say “cookie” and “milk”? I know that the real reason for these gains is the excellent preschool special education program he has been enrolled in since September.
So while there are many reasons why I wish the perception of a link between vaccines and autism would just go away, my biggest reason is a selfish one. Parents of children on the autism spectrum need each other for support, and the idea that vaccines cause autism (or any sort of harm) distracts us all from our most important role – loving and caring and advocating for our children.