I speak with a researcher who says, “we need to hear the pain and needs of the parents of individuals affected by the disorder.” She goes on to say, “Nobody else can know better what the needs of the affected person are.” “Oh,” I say, “how about speaking with Autistic people?” Surely they know better than any what it’s like to have once been a child. The researcher tells me this is not their focus. I try to understand what I’m missing, what is the focus then? I ask more questions. I listen. As I listen I am aware of my heart. It feels louder, is that possible I find myself wondering. Can one’s heart actually beat harder? I decide this cannot be true. I’m upset. I know I become more aware of my heart when I’m upset. I try to listen to her words, but I’m not able to hear all of them. I know I’m missing some of what she’s saying. I concentrate harder. My throat constricts. My stomach tightens, my face feels warm.
I try to make a few helpful suggestions based on what I hear her saying. But she is not interested in suggestions. I try again. It is as though we are speaking two different languages. I cannot understand hers and she seems unable to understand mine. We are becoming exasperated with one another. I try to provide answers from my perspective, but this is not the focus of her research she tells me. The needs of Autistic people are not the focus. I feel some confusion. How is this research? How can one do research if the questions are already skewed? Isn’t research supposed to be unbiased? Isn’t the point of research to learn more, to understand? But we are trying to understand, she tells me.
We are circling each other with growing wariness. The conversation began one way and somewhere it took a turn. I’m trying to both back track to see where it changed from cordial, curious and open, to distrust, while also still listening and trying to understand what this research is meant for. My daughter is behind me. She drifts past where I’m sitting and stops. She is looking up toward the ceiling, her head slightly cocked to one side. I know she hears this conversation. I know she can feel my growing tension. “I’m just going to take this call into the other room,” I whisper to her. I go into the other room and shut the door. I don’t want my daughter exposed to more of this.
The constant barrage of words – Disorder. Pain. Afflicted. These are the words the researcher uses. These are the words, like a never-ending eddy threatening to pull my daughter down. I once used these words too. I once said things to others in front of her. “You walk forward and not backward,” Emma wrote the other day. Just before that she’d written, “…regrets are not needed.” I owe this to her. I must move forward and not backward. Regret, like those words, pull me down. I have made a commitment to become more aware of my regrets and to not allow them to keep me stuck.
I become aware of the researchers voice again. She really wants to know, she says, about the pain. And I lose my patience. I tell her no one would dream of asking me this question regarding my non autistic child. I tell her that if she is interested in understanding Autistic children, she should ask Autistic adults to describe what it was like. She says, “Well, if you’d like us to speak to your daughter we can certainly do that too.” But that isn’t what I suggested.
My exasperation with her has now crossed over into anger. She compares autism to Parkinsons and I’m furious. “Let’s not do this,” I say. We are practically competing with each other as to who can hang up faster. I am madly hitting the red button on my phone to hang up, but it won’t disconnect. This would be comical if I weren’t so upset. I have a moment when I see the humor, but it’s fleeting. I remind myself to come back to this feeling. Finally I stand there looking at my phone and I feel utterly defeated. This was an opportunity to offer another point of view and I failed. Miserably. I go out into the other room, where Emma is listening to music and dancing. I watch her, marveling at her beauty, her grace, her joy. In contrast, I’m a churning mess of anger, indignation, sadness and upset.
“We are interested in the needs of the parents,” the researcher said. More accurate information, unbiased research, questions that are not skewed to get a particular response, training that would have helped us support my daughter to communicate through typing at an early age, removing the emphasis on spoken language, abandoning functioning labels, showing me that my neurology has deficits too, that we have devised a society skewed to accommodate non autistics who use spoken language to communicate and how that benefits those of us who speak and aren’t Autistic, but hurts those who are, helping me understand that we have set up our schools to segregate a population that should be included and not excluded. My needs? Change the way autism is viewed and spoken of and my needs will dramatically decrease. Help me navigate parenting an Autistic child by giving me access to Autistic people and culture. Show me others who are parenting with love, compassion and complete and utter respect for their child. Most of these are things I’ve found for myself, but what a wonderful difference this would have made earlier.