A year ago I did a crash landing into the world of bloggers, all of whom were Autistic. I had been looking for them for years, but suddenly, or so it seemed to me, I found not one, not two, but dozens and dozens of blogs written by Autistic men and women in their 20’s, 30’s, 40’s and 50’s. It was surreal because these people were writing about their lives, giving glimpses into what it is like to grow up and live in a world and society that does not “see” you, yet talks about you and perpetuates misinformation about you with little interest in verifying whether their interpretation is in fact correct.
Pretty quickly after my crash landing I found this ‘post‘ from the blog Radical Neurodivergence Speaking about attending an Autism conference where the keynote speaker said, “When one family member has autism, the whole family has autism”. The blogger writes, “My autism is not about my parents or my siblings or my non autistic friends and extended family. It is my neurology. It is not theirs. No matter how much they listen to me, how much they try to understand, it is not about them. It’s a lot easier to protect the martyr mentality when you insist it’s about you, but that’s just not how it is. As long as it’s considered to be our parents’ thing, though, the system will continue to be broken. We keep having to fight for ownership of our own experiences, and that’s not right. It isn’t even wrong. It’s so backwards there is not yet an adjective for it.”
Now remember, I was at the very beginning of finding actual people who were talking about their own neurology as opposed to ‘experts’ talking about their interpretation or ideas about a neurology they did not have. I had to reread that paragraph before I could go on. “As long as it’s considered to be our parents’ thing, though, the system will continue to be broken. We keep having to fight for ownership of our own experiences, and that’s not right. It isn’t even wrong. It’s so backwards there is not yet an adjective for it.”
I had to get up and walk around because this concept, this simple, and now it was dawning on me, pretty obvious idea was not something I’d really considered before. I had to sit down and think about this. “As long as it’s considered to be our parents’ thing, though, the system will continue to be broken.” And then I realized something. I didn’t like what I realized, but I couldn’t tamp it down. It kept springing back up into the forefront of my mind. I realized by making autism and my daughter’s neurology about me, I would continue to feel sad and victimized by “it”. “It” was this terrible thing that had happened to us. “It” being the operative word. “It” wasn’t my daughter. “It” was what we fought against. And by then adding a judgment to my daughter’s neurology (it’s bad) I was limiting it even more and adding a layer of horror to it. Without meaning to I was making things much, much worse for all of us. Without knowing it, I was doing the opposite of accommodating “it” I was co-opting it and making it all about ME.
Now before people start saying things like – wait a second, autism DOES affect the whole family, or, but the siblings DO feel x,y and z – I need to state the obvious – of course an autism diagnosis affects the whole family, but affecting the family is different from saying, “When one family member has autism, the whole family has autism.” That simply is not true. The whole family does not “have” autism. This is not FACT. Insisting that it is fact when it is not, does not serve any of us, but mostly it is a massive disservice to my daughter and all who are Autistic.
When my father had his horseback riding accident I was nine years old. It completely affected my outlook on life. At the age of nine I considered death, hospitals, doctors, what it means to be physically disabled, in a way that my same age peers were probably not contemplating. Yet I was not suddenly “disabled” because of his accident. None would have suggested that. I might have been helped had I seen a therapist to work through some of my fears and later phobias that resulted from his accident, but that is very different from co-opting his experience. When my father was in a wheel chair, the entire family did not suddenly lose the use of their legs. My father needed accommodation, ramps needed to be built inside our house where there were stairs, he needed assistance getting into and out of the swimming pool, but the rest of us continued to walk around, ride our bikes, play with our friends and live our lives. Did my father’s accident affect me, well of course it did, but never would anyone have suggested that because of my father’s disability the entire family was therefore disabled.
“We keep having to fight for ownership of our own experiences, and that’s not right.”
We all need and want to be heard. Parents want their experiences to be heard and acknowledged. Siblings want their experiences heard and acknowledged. But that should not be at the cost of our Autistic children. ALL people deserve to have the accommodations they need. Just as my father required ramps built in our house, my daughter needs support to communicate without the added pressure or guilt that she is causing the rest of us hardship. We need to reframe the conversation.
More terrific posts from Radical Neurodivergence Speaking: