Autism is Not Cancer.
I don’t often ban people from Ottawa Autism Connection, but when I do, it’s pretty obvious why. This time, maybe not so much, so I want to explain.
Today is Father’s Day.
When I was 2, my mom loaded up her car and packed me up and drove two hours to her parent’s house. It was her wedding anniversary. She left my dad without even a note. I didn’t see my dad again until I was 22.
My dad became a mentor over the last decade we’ve been back in touch, but he has his own life. He also has stage-4 cancer.
So as you can imagine, Father’s Day is … complicated.
To suggest, as someone did on Ottawa Autism Connection’s Facebook page that cancer has anything to do with autism is insulting to everyone.
My experiences with my sister being born a micro-preemie, my neighbor in the delivery room having to deliver her still-born, and my own son having a heart murmur at birth, have all taught me that autism is a very low priority to a sick baby.
There are parents who are dealing with loss. They didn’t deserve it, and some would happily “live with” autism. Does that diminish the real grief and sense of loss that we experience initially? Absolutely not. I spoke with Bereaved Families in passing a few years ago, because I was in the same building as their offices, and their representative said the process is the same, it’s just a different type of loss. It’s an abstract loss. An ultrasound technician implied that my second child was female. He wasn’t. He was born male. What’s odd is my husband and I still have the baby clothes for the non-existent daughter. In fact, we’ve moved twice with the bin of clothes. I mentioned this to Bereaved Families, and told her I felt ridiculous and guilty (because others have real loss, and mine is abstract), but she was warm and empathetic: this is normal.
Your sense of loss is normal. Your anger is normal, but misdirected.
“Should we have a cancer pride day?” Well, we already do. Breast cancer, pancreatic cancer, prostate cancer … all of these have fundraising celebrations. I think we need to clarify what is meant by “Pride”. Pride in overcoming challenges. Pride in accepting ourselves, others, and our situations. Pride in the community for changing its point of view towards us. Pride in societal progress. Pride in scientific progress.
See, a long time ago, cancer was something to be ashamed of, and it still is in some cultures and faiths: http://www.wsj.com/articles/SB122304682088802359.
Autism, like cancer, is stigmatized. But there is a place for celebration and pride. People who have autism, or autistic people (depending on your preferred identification), have made huge strides in changing the dialogue around the “disorder”.
Cancer happens. Autism happens. Gay happens. Life happens.
I have to admit, I’ve often thought of just closing up from the autism community altogether, this episode doesn’t help that feeling. The idea of autism being the same as having a child with cancer is so disgusting — even if it was said out of pain, I think it’s unforgivable. Cancer carries with it a possible death sentence. I actually worry about the children of parents who feel this way. What neurosis are they developing about themselves? I remember when my son became more verbal and I was trying to correct him on his speech, he burst out with “why are you trying to fix me? Why can’t you just love me?” If you read from self-advocates, many of them felt this way. I answered my son like this “I’m not trying to fix you. I’m trying to help you. You need to be able to speak for yourself; I won’t always be able to. So I want to teach you how to do it in a way other’s can understand. Ok?”
We, as autism parents, must move away from the puzzle piece mentality of our kids as though they are missing pieces of themselves, or trapped in their bodies, or other romantic and melancholic ideas of autism. They are human.
When we started 8 years ago, the conversation was very much around “curing” autism. Wakefield’s fraudulent link between vaccines and causation was just being believed by desperate parents. The gut-theory, also since debunked, was the rage. I remember one mother telling me “God doesn’t give us any more than we can handle”, and I almost punched her. I had no idea who was telling me truths or who was selling me snake oil. Cheri’s autism page was a great asset, until she started a therapy that involved Saran-Wrap and banned anyone who asked questions. Eventually, I wanted to know what autistics themselves found helpful. I started with Temple Grandin. Then I moved on to the lady named Amanda, who filmed herself “stimming”. Then I understood stimming: it’s like when I shake my leg or click my pen. Carly came along and I wanted to know everything she had to say, until she became silent. I followed Thinking Person’s Guide to Autism and the Autism Self-Advocacy Network (ASAN). It wasn’t always easy, there were harsh words and judgments for parents like myself who believe in IBI. But since my son was too young to tell me his thoughts, it seemed obvious to know what had worked for people who had been through it.
In reading the experience of autism through an autistic person’s own voice, I found my truth. Autism was not something that was “done” to my son, or to me. It’s just something that happens. We try, as a society, to do the best things we can. We don’t always get it right. Sometimes, we get it quite wrong. Parents try to advocate for their children, but run the risk of being caught in the pits of despair and self-blame. Instead of viewing autism as a deadly illness, we should look at it as diversity.
Neurodiversity, like the Gay Pride Movement, started with advocates with in the community. The need and want to overcome (religious) stigma and gain acceptance. The self-advocate community has helped me accept my child for who he is and what his autism means.
Most of all, my son has shaped how I view autism. His perspective is unique. He has made people think and perceive differently. His life has brought joy to many others in our community. To me, that is the true measure of being a parent – how much your child adds to his or her community.
Autism can feel like a tragedy. The child you thought you are going to raise is not who you thought. Nope, he or she is someone very different. That isn’t something to lament; it’s something to explore.
One more thing: one of the interesting things I’ve noticed is that the neurodiversity movement has challenged how even the most zealous “cure” organizations into coming to accept their sons and daughters who have autism. I think that’s a natural progression in parents learning more about their children as they grow up, but also I credit the self-advocates who have not been silent.
Autism is not cancer. Autism is autism.