Fear. I have grappled with fear my entire life. I’m 54 years old. You’d think I’d have figured out a magic formula to ward off fear by now… but I have not. However I have figured out some things that used to frighten me, but that no longer do. Things like this:
“Among all autistics, 75 percent are expected to score in the mentally retarded range on standard intelligence tests — that’s an IQ of 70 or less.” ~ Wired Magazine 2008
“Roughly 25 percent of people with autism speak few or no words.” ~ SFARI 2013
These two quotes had not yet been written when my daughter was diagnosed, instead there were countless other “statistics” spoken and/or written as though fact, that terrified me. I had not yet learned to question everything we were told about autism. I had not yet realized that almost everything people said to us about autism and our daughter would turn out to be untrue. I had not yet understood that it was these types of things that caused me fear, not my daughter.
Often someone reaches out to me and they are filled with the same fear I once felt. They remind me of all those predictions, the “statistics,” the warnings, all the things people said to us that caused me to stay up at night. Terrified because the way autism was spoken of was filled with dire predictions, awful statistics, and because I did not yet know what autism would mean for my daughter.
It is one thing to read statistics that make you feel terrified and another to live with a person these statistics claim to represent. A lived life, a human life, a living, breathing, feeling, human being who also has fears and thoughts and desires. So many parents need help figuring all of this out so they can help their children flourish. Parents who hear and read all the terrible things people say about autism and Autistic people and then are faced with their child and find all those things being said distance them from the genetically closest human being they will ever experience in this life. (This was something Emma wrote to her brother not so long ago – “the one closest genetic person to you.”)
Statistics do not help us parent better.
One of the single most important things Richard and I began doing was to talk to Emma as though she understood, even when we were not sure she did, even when she walked away, even when she seemed uninterested, had her back to us, closed her eyes, said words that seemed completely unrelated, wandered off to some other part of the room, even then, we kept talking to her, including her in whatever conversation was going on. And now. Now we are so glad we began doing that, because, as it turns out, we were right, she understood it all.
She understood it all.