Some people say that parents like me are dismissive of how difficult it is to parent an Autistic child. They say that we are choosing not to dwell on the negative and that it’s important that the other side be shown. They suggest that by NOT discussing how very challenging it is, we are doing harm, that it is in the stories of horror and devastation that services are gotten. They say that pathologizing autism is necessary because without talking about it as a pathology, funding would be diminished or cut off. Many people assume that those of us who write about the positive aspects, the joys, the triumphs that we experience as parents of Autistic children, we must have “high functioning” children and that we cannot possibly know what it is like to have a child who is “severe”. We are accused of diminishing or dismissing the suffering other parents experience.
When I was fairly new to all of this, not so long ago, I thought nothing of writing about my child’s latest upset in graphic detail. Not so long ago, I wrote about my child, believing she did not and could not understand what was being written, that she would never read my words, that she could not and did not understand what I said to others, what I wrote. I posted photos of her, never once considering whether she wanted such a photo posted on the internet for all to see. It did not occur to me to ask her. Literally, it did not occur to me. These are things I now am aware of. Posts have been deleted, photos have been removed, but had I continued to listen to what I was being told, had I not seen and met non-speaking Autistic children, teenagers and adults who wrote how it felt to be spoken of, written about, and treated as though they weren’t there, I don’t know that I would have thought to stop.
It isn’t that parenting is never challenging, hell, life is challenging, it’s that in talking about parenting it too often sounds like we are blaming our child for our suffering. It’s like when my husband and I fight and I think to myself, if he didn’t do x, y and z, I wouldn’t get so angry and while there may be some truth to that, it also isn’t owning up to my part in the fight. So many people write about parenting but they don’t seem to connect it to how they respond to this situation with their child, is how they respond to stress, not getting what we want, impatience, dealing with upheaval, etc. It seems to me, the less common conversation is the one that talks about personal responsibility and honoring another person, instead of blaming them for what ails us.
In all of this, the Autistic person, whether they are a child, teenager or an adult, are being “treated as though they weren’t there.” This was the thing that changed everything for me. Realizing that there is a person there. Right there. Right here. Right in front of me. And this person has feelings and thoughts and her opinions about herself are affected by what I’m doing and saying about her. She is just like any other child, who would feel tremendously sad and even traumatized knowing that her parent blames her for their pain and upset.
This post is being interrupted by more pressing matters, so I will have to come back to this when I have more time…