A huge part of why I wanted to start writing about our adventures with autism and what I am learning about it is to fight misconceptions and the negative image autism has held for me. I am so bothered by what I read when I first started researching and trying to learn.
I didn’t start out with misconceptions. The autistic kids I know are wonderful. They are intelligent, well-rounded individuals whose personalities are as diverse as their symptoms. But after Jake received his diagnosis, I went looking for more information. I wanted to learn more than kids with autism are great and different from each other.
What I first found, however, ended up increasing my stress rather than helping me at all. The statistics on autism are alarming and seem to float above everything else. The most recent data suggests that 1 in 68 children are receiving this diagnosis. Other stats describe how autism is more common in males, is genetically linked, and siblings of children with autism are more likely to receive a diagnosis also. Alarming! As well, there is a suggestion that in families with an autistic child there is more stress on the marriage and I read somewhere that 80% of marriages with autistic children end in divorce. Super.
Okay, so as I looked deeper, everything just looked darker. The internet is full of stories that are sad, stressful, tragic and troubling. Autistic kids wander. They drown. They can’t tell their parents anything, let alone that they love them. Yikes. That is not my kid. Well, he might wander a little. And we are struggling to teach him to swim.
The point, however, is that I was reading the wrong information. I needed to read about families who were more like mine. Families where it is hard but so good. Families where they are making it all work and it’s all alright, even when it’s not. So I went searching. And I found this blog:
It’s a letter that this mom wrote to the head of Autism Speaks explaining how she feels about what she calls the “rhetoric that demonizes and dehumanizes our loved ones, telling them they are a tragedy, a burden.” It spoke and continues to speak volumes to me. This mom is amazing. She took all of my panic and doubt and fear and spun it around. I threw it away because she wrote truth and I understood it.
She recounts her phone conversation with then-President of Autism Speaks Mark Roithmayr,
Because demonizing autism dehumanizes my child. Period. Because while shock and awe might raise money, they compromise my child’s safety, they tear away at her dignity, they separate her from the rest of us. “And what of older children and adults?” I asked Mark at the time. At six, I knew that my daughter wouldn’t see that video, but what about those who were old enough to watch it? What about Autistic teens who were so damned vulnerable — to bullying, to depression, to suicide. What about them? Did anyone think of what it would feel like to hear that if you haven’t already, you will destroy your parents’ marriage, bankrupt your family, make it impossible for your parents and siblings to do anything at all without pain and embarrassment? How would it feel to an already-struggling kid to hear that THEY are the cause of desperation, loneliness and fear?
Wow. This is so amazing and so true.
I never want Jake to feel like he is a negative. I never want him to feel like what makes him unique makes him less. I never want him to feel like what he struggles with is something that causes us pain or embarrassment. I guess that means I will refuse to be embarrassed. From this moment I am choosing to think of autism as a blessing, because it is a part of Jake, and Jake is a blessing. End of story. I will do my best to figure out how to help him, how to understand him, and help him cope with his challenges. But I will not think of it any other way. I believe that my words and attitudes really have power, and really will shape my kids. They will be valued, loved, appreciated, and that is that.