I’m 21, a rising junior Motion Design major at Ringling College of Art and Design, and the younger sister to a brother with low-verbal autism.
I’m facing the future with uncertainty. Wherever I look, stories regarding SB277, which severely limits vaccine exemptions in California, are being reported. People are screaming, and now a referendum to overturn it is being sought. Things are out of control, and many families like mine feel helpless. Now it seems that despite any family history of medicine or vaccine sensitivity, doctors are being compelled to dismiss reports as a coincidence, even if parental concerns are valid. Adding to the drama are the suspicious deaths of three doctors involved in alternative medicine, including autism researcher, Dr. Jeff Bradstreet.
As a sibling, I watch the discourse with disbelief and dread. The attacks against parents with concerns are vile. They aim to be so cruel that parents will retreat in silence. I’ve read comments where they will accuse parents of preferring their children be dead to having autism. These same people will say that we must be “genetically inferior” and yet reject a delayed or lighter schedule for medically fragile individuals. How can you claim one and deny the other?
I hear people my age repeating the same vile discourse towards parents without once researching what lies beneath their apprehension. Many began vaccinating only to have a child suffer regression or other debilitating conditions, and are fearful for their additional children. Some have a genuine concern about a vaccine schedule that has sometimes more than tripled since they were children. It does not help to have people shout at them that “vaccines don’t cause autism” when they can’t say what does. You can’t legislate belief. If a parent witnessed a startling change following a medical procedure including high fevers, screaming, hives, swollen joints, and loss of skills, you can’t convince them that they didn’t see it.
Growing up, there were few people to help my brother because nobody knew how to define autism. Now, nobody wants to help because he’s in his 20’s and is “too severe”. From my observations, focus is always on the milder forms of autism. The children are verbal, highly skilled, and can be “saved” so the doctors have a “success story”. My parents walked out of a neurologist’s office when my brother and I were young because he said, “Just focus on your daughter, she you can save.” They were so upset at his failure to acknowledge they had two children in need they never went back. Now the push seems to be for this mandated protocol, and risk factors are an acceptable loss. How can anyone expect parents to accept this mentality about their own children? It hurts me as a sibling to hear that mentality about my only brother.
My concern is for my future children. I was lucky to have a doctor who was a former NIH researcher that treated my parents with respect. The current environment does not allow doctors to freely advise their patients. Some of the most vile rhetoric suggests going after any doctor willing to delay or minimize the schedule to the most communicable childhood diseases. If a doctor must fear for their livelihood, how can any honest conversation happen? Neither party feels safe. It’s exhausting to endure vile insults as a counter to genuine concern. My parents live in constant fear of what will happen to Anthony when they are gone. I make the most of every opportunity so my parents will know that Anthony will be safe in my care. These decisions will affect my life. How can I trust in those that could trivialize my brother’s suffering and my parents’ struggle?
Natalie Palumbo is a Contributing Editor to Age of Autism.