I reacted strongly when I read about what RFK Jr. had said about autism. If you have any awareness of the autism world, you probably already know, but here's some of what he said...
"Autism destroys families, and more importantly, it destroys our greatest resource, which is our children. These are children who should not be suffering like this," he said. “These are kids who will never pay taxes. They'll never hold a job. They'll never play baseball. They'll never write a poem. They'll never go out on a date. Many of them will never use a toilet unassisted."
I reacted strongly. I was most bothered by him saying that autism destroys families. That hit me hard. I think what bothered me most about that was that felt like he was putting blame on people like Janey---like he was saying that someone like her destroys a family. I don't think he meant that, totally, but it made me angry and upset. I was also upset by his choice of examples of the things people like Janey will never do---holding a job, paying taxes, playing baseball, going on a date. It felt like he was saying that she and others like her aren't holding up their part of society---that she doesn't contribute anything valuable to the world. Again, that might not be what he meant, totally, but it hit me that way.
I've seen a lot of people in the autism world saying that they are glad that people are speaking out about severe autism, profound autism, the kind of autism that isn't glorified on TV shows, the kind that can't be self-diagnosed because those with it aren't able to express concepts like that, the kind that isn't simply a different way to seeing the world, but rather a life-long disability. And those people have a point, a good point. It's a very telling thing that Janey wasn't upset by what was said. That is because she has no idea what was said. She can't read, she doesn't know who RFK Jr. is, she doesn't know what autism is. And so the hurt at his statements wasn't something she felt. And yes, I am glad that voices of those caring for someone with severe autism aren't being silenced, as I think they were for quite a few years.
But the vital part missing from what he said was the humanity, the value, the innate personhood of someone like Janey. If all you knew about severe autism was what he said, you would not picture someone like Janey, or like so, so many of the people I've gotten to know through this blog, either in person or virtually. You would not picture my beautiful, fascinating girl. You would picture a burden, a sad, suffering burden. I don't think what he said was a call to provide more help to the people like Janey. I don't think he's proposing funds for more housing, more respite, more recreational opportunities. I think he's mostly interested in PREVENTING people like Janey from coming into being, not in helping people like Janey who are here.
I feel like there is a balance that can exist in talking about severe autism. Without really intending to, it's what I've been trying to do for the last 17 years in writing this blog. I want to be honest---completely honest---about the challenges that having a child like Janey can pose. I have tried very hard to be honest about the tough things---and there have been plenty of tough things. I have done that for a few reasons. One is because I felt often that the truth of autism parenting was something that wasn't being talked about, that we parents were being told directly or indirectly that being honest about how hard it could be was wrong. I wanted to let others know they weren't the only one---that there were other families like theirs. And I needed to hear from others for my own sanity, so I knew that I wasn't alone. I also wanted to be honest so that hopefully those in the position to help with the kind of things we desperately need help with would understand our needs. We need respite. We need programs for when our loved one with severe autism turn 22 and age out of school. We need kindness. We need medical care that understands severe autism.
However, it was and is extremely important to me to also show the joy Janey brings to us as a family, and the joy that others like her bring their own families. I want to show how cool Janey is, how much fun she can be, what a important and valued part of our lives she is. I love sharing stories about Janey, how she uses her limited speech in amazing ways to get across her point, how her smile can melt hearts, how her love of music transcends her limitations. Every person with autism has value, has importance, has a place in the world.
There is a horrible thing I often think about. It's that one of the first groups of people that Hilter killed was children with severe disabilities, and that he did so saying that they were a burden on their families. I am in no way suggesting that is anything that was or will be done here and now. But I don't want to go even a tiny step in that direction---and portraying those with severe autism as non-taxpaying family destroyers---well, I can think of many, many ways to talk about severe autism that are both honest and loving, ways that illustrate what we need as resources and help while also showing why our children are worthy of all the love and respect that all of us, taxpaying or job holding or poetry writing or baseball playing or not deserve.
I think the general public is capable of understanding that it can be very, very hard at times to be a person with or a parent to someone with severe special needs, but that there is also joy, and love, and humanity there. I don't think we have to settle for a portrait of those like Janey that only shows the burden. I wish RFK Jr. could meet Janey. I wish he could meet all of your girls and women and boys and men like her, and that he would put his passion and influence and power into giving families like ours the help we so need, not because our families are being "destroyed" but because our loved ones with severe autism deserve a life with all the love, dignity and happiness in the world.
