An Open Letter to RFK Jr.

 Dear Mr. Kennedy,

On Friday whispers of the upcoming reasons behind autism spectrum disorder began to infiltrate our nation. First on social media and then with news articles letting us know that your initial proclamation of identifying the root cause of autism was going to be announced. September arrived last week, and I began waiting with anxiety for your knee jerk announcement knowing that appropriate research was not and could not have been completed in just a few months. 

I will tell you first and foremost, I appreciate your interest in finding a cause for autism, especially the type of autism our family lives supporting--profound autism, where at any given moment my daughter can aggress or elope and her cognitive ability remains nearly constant at about age 7 and socially she's about the age of a kindergartener in her nearly five foot frame that is enamored by puppies and babies. I understand what it is like to watch her struggle and watch others shun her when she tries to talk to an infant or toddler. I see the preteens giggle and turn away with discomfort unsure how to let my daughter know they are not interested in being her friend. 

As a family, we know the struggle that comes along with raising a child with autism. We also know the strain on relationships, the pain of socially and emotionally being excluded from circles of friends we once gathered within. I know the pain of wishing, wanting and hoping for a cause so others, especially others like my own daughter don't have to face the extra challenges of living with this disability. 

That said, I am also very aware of science. Being married to a Toxicologist, one that has been board certified for years, I have seen medical experiments done since I was a teenager. First in graduate school, then in his work and I now watch him pour of science and research understanding chemicals that are in the environment and also those that we are exposed to that can and do change our epigenetics. I also know that he would love to help families like our own understand our children, work to minimize the detrimental parts of autism and identify a way to mitigate the impact of autism on individuals and their family but I would be remiss if I didn't tell you about my concern with your work. 

Unfortunately, not all families are like my own, with their own professional living in the home to interpret data and research and explain the findings to lay people like me. Your announcement will not only be fallible, but it will also lead to limitations of research, it will lead to parents making choices that they may not have without the information which could be detrimental to themselves, their current pregnancies and also even the infants and children they are raising and it will create an even greater divide in our nation. 

You will also cause undue pain to mothers who are already questioning themselves, their genetics and their own choices while pregnant. Personally, in five pregnancies, I never took Tylenol. I never took any medication. My daughter is still autistic. I have revisited my entire pregnancy. I never ate lunchmeat; I didn't consume sushi. I was primarily focused on consuming whole foods that were safe. That said, I have revisited my pregnancy a million times since my daughter's diagnosis. From the ONE time I used hairspray before I knew I was expecting, to the exposure to potential childhood illnesses my older children carried home from school while I was expecting. Could it have been not enough prenatal vitamins? Was it my labor which almost killed me that was the reason behind her autism? No matter what it was, while if preventable I'd love others to know, for me autism isn't the worst thing that has happened to our family.

Autism. It is hard. Incredibly hard. There are days I find myself sobbing in the shower unable to collect my thoughts, worried about my other children when I die but then there are days I pause and reflect on the gifts autism has given me.

Autism has given me purpose. Purpose to learn about individuals with this disability and to meet new people who also walk this path alongside me. Autism has caused me to be more empathetic, compassionate, aware of disability rights. It has taught me to be grateful for the "normal"--you know, your child being invited to a party, or playing on a sports team and even more simple, it has taught me to see simple things as gifts, like a child's voice, their words, a song or the ability to learn to read and write and play games. 

Mr. Kennedy, I don't fault you for wanting to make a difference. I don't fault you for trying. I do however fault you for not committing to studies to understand autism and for grasping at straws to identify a reason for a spectrum of disorders that will take more than a lifetime to understand. Instead of causing distrust, riling up a community already trying to do their best without additional pressure, why don't you work to make our lives easier? Work to help our children find appropriate education, therapies, support. Perhaps decrease costs for professionals educating themselves to serve our children so that we as parents can take the time to focus on the good autism has brought to our lives. 

So, Mr. Kennedy, pause. Pause and reflect. Let's work together, the idea to identify is great, but let's identify appropriately.