We’ve been seeing numerous stories these past few weeks about parents killing or attempting to kill their autistic child. For the most part this blog will be focused on telling stories from childhood/teens about life on the spectrum. But after reading todays Diary of a Mom post, I decided to go ahead and share some reactions. She wrote eloquently about these news stories…she always writes eloquently. I left a comment there that I thought I would post here, in modified form.
Click here to see her full post. The comment:
One of the great tragedies facing the autism community: when you love your child, and spend every waking second trying to think from their POV, trying to understand them, putting 100% effort into making their lives comfortable no matter how difficult: you’re not a news story.
“Mom respects autistic child day in, day out”…that story doesn’t go viral.
“Dad learns one sensory trigger of their child, makes their life more comfortable”…no one reports on this.
Parent kills or tries to kill their autistic child? This is the only time parent/child stories hit big. This is all the world outside of the community sees. And I have to wonder what message that sends. I don’t think it’s hard to imagine. I think the general public has no idea how much love, support exists in the autism community. I think when the general public hears the word “autism” they associate it with hopelessness, because that’s the only story they hear. They have no idea that parents are blogging, writing, creating all sorts of vibrant stories about learning to connect with their child, learning to identify their triggers, support them….learning to make their child’s life better.
Sometimes? Things don’t improve…yet parents continue to work on the project of making space in this world for their loved one. A profound and graceful effort…that will never hit the news cycle.
If someone were to read this and think, “But I do feel hopeless…my child’s autism has made life hell, every step of the way”…I would just say, don’t worry: your story is being told.
It’s the only story being told. It’s the only story the public hears.
I would just ask that we make room for the others stories out there…the ones about progress, change…the stories about unconditional love. The stories that may help more people see the full spectrum of autism and not just the one facet (death, despair, hopelessness) that unfortunately gets handed the biggest megaphone.
There is a common perception that social media is replacing the old media. But there’s a problem: by design, social media is fractured, compartmentalized. People interact in closed, sealed off communities. As a result, stories from one community may never reach the public at large.
The old media: flawed, broken…but it has reach. And it reaches a broader range of people. Consequently, when it latches onto one story, from one community…it can create a seriously distorted view of that community. And there’s only story about autism the old media seems to like: parent kills autistic child.
The positive stories about autism are told by parents every day…in blogs, videos, Twitter, Facebook, and so on. Unfortunately, these stories are too often confined to their community. Old media doesn’t care.
It’s not a question of changing old media. I think it’s a lost cause. It’s a question of how social media should be used to change perceptions. How do we spread stories outside of the community? I don’t know the answer. I don’t know how to give positive stories the same reach and impact that the negative ones have.
I just know the voices of despair have the megaphone. And that’s okay, they can have that megaphone. I don’t want to take it from them. I just want to find a second megaphone. One for a different- better- set of stories. And perhaps just a little more volume.