Humanity. What defines it? What is it that gives us inherent worth and value as one of God’s creatures? Is it the ability to create and to produce tangible goods for consumption? Are we limited in our value only if we can accomplish certain tasks and one day pay taxes? Recently  RFK Jr. said some things about the autistic community that has understandably left many autistics and their families deeply troubled and upset. 

“Autism destroys families, and more importantly, it destroys our greatest resource, which is our children,”

“They’ll never pay taxes, they’ll never hold a job, they’ll never play baseball, they’ll never write a poem, they’ll never go out on a date. Many of them will never use a toilet unassisted.”

Any person who is a part of the autism community whether they themselves are autistic or their child is autistic knows that for many on the spectrum his words are completely false. Not all autistics have high support needs and many of them will indeed go on to do all of the things he said that they would not. There are however individuals on the spectrum who do have incredibly high support needs who may not ever accomplish any of the things that RFK Jr. talked about. My son is a person with autism and who also has high support needs.

Will my son ever play baseball or write a poem or pay taxes? I believe in miracles and possibilities, so I will never say “never” but I also believe that even if my son never does any of those things his life still has value, he still has inherent worth as a human being. 

It is interesting to me that so many people determine a persons value to society to be based solely on what they can produce in consumable goods or whether or not they can pay taxes. The man that beats his wife every night likely has a job and pays taxes. The pedophile that hides in church and molests children likely has a job and pays taxes. At one point many rapists, murderers and thieves have likely paid taxes. 

Many people will look at someone like my son and similarly disabled children and adults and decide that they are a burden to society. I have been through much as I have learned to navigate my sons needs and advocated for his right to dignity, kindness and access to life, but he has never been a burden. 

Anyone who spends any amount of time with him knows that his smile and deep belly laugh light up a room. When he hears music he spins his entire body and laughs and smiles like he’s experiencing the deepest level of joy, and like God created music just for him. Does my son have profound struggles with daily life? Yes. He requires 24/7 care and supervision to ensure his safety. Do I wish with all my heart that I could remove those difficulties but keep the joy he radiates? I won’t lie. Yes I do. I know that I won’t live forever and the idea of my son being left to a world that sees him as a burden breaks my heart. Have I questioned what, if anything I could have done to prevent the severity of my sons struggles? Yes I have. Do I want to prevent other children from having to live with the kinds of struggles my son lives with? Yes I do. I believe in both the power of scientific research and as I said before; I believe in miracles. I also believe that sometimes the true miracle isn’t the power of Gods supernatural healing. Rather it is instead the ability to find peace and joy and purpose in what the world would call a broken circumstance.

My son is not broken. He is exactly who he was intended to be. I don’t know why my son is profoundly autistic, but I do know that I knew my son was autistic from the moment he was born. I won’t pretend that things have been all warm and fuzzy and beautiful. Things have been hard. I am a human being and I have cried out in sorrow longing for answers. I have spent countless hours researching the possible whys. At this point I can honestly say that I don’t think the why or how matters for my family anymore, but I do understand that It might matter to others. I have been down the long journey of searching for answers in the hopes of helping my son and I can assure you that scientists have been researching many possibilities as to the cause as well as different treatment options and it is disingenuous for RFK Jr. to act as though this is not the case. Scientists and researchers by their nature do not tend to be show boaters, grandstanders, and salesmen. They work quietly and diligently in the background searching for answers, often spending years trying to secure the funding needed to conduct their research in the first place. I won’t pretend to know RFK Jr.’s heart and the true meaning and intent behind his words. I can only say that words have power. When you are a person with the position that RFK Jr has been given your words must be impeccable. I know from experience that there are a lot of people in this world with ugly hearts when it comes to those who are differently abled. I know firsthand the way that people can behave towards individuals with the kinds of struggles that my son has. A man once came up to me in a grocery store to ask what was wrong with my son, and ended his conversation with me by saying “well that’s too bad I just hope my tax dollars aren’t going to support your r*%#rded son” I may not be able to know RFK Jr.’s intent but I can observe that we have become a human race that cares more about posting a video of a tragedy we see happening than we do about actually helping during that tragedy. We are becoming a human race that cares so much about image and perfection that we are forgetting to have compassion and kindness. Each day I wake up prepared to advocate for my son, and to protect him. There have been times when the actions of people or establishments have left me feeling broken. There have been moments in life that the pieces of my soul have felt shattered over the careless words or disregard for my sons humanity. Each time I have had to put those pieces back together always trying to ensure that the soul I put back together is filled with grace, forgiveness and dignity. A complete soul that is beautiful like a stained glass mosaic and not bitter and hateful and angry. Not something scattered like busted glass on a highway.

Still, while there are certainly a lot of ugly hearted humans in this world, I am blessed everyday to know amazing friends, teachers, paraprofessionals, therapists and medical professionals who show my son and me so much kindness and compassion. They have all worked alongside me to help my son reach his full potential.

My son is a beautiful soul. He has inherent worth. His humanity and the value his life has is so much more than what he can do.

While I believe wholeheartedly in the importance of research, I also believe that what autistic individuals and their families need is support and compassion and access to resources that see them as whole and valuable human beings who are deserving of dignity, respect, kindness and access to life regardless of their functional capabilities.