Time for a new story?

Earlier this week, John Robison resigned his roles on the Science and Treatment Boards of Autism Speaks. You can read the full resignation letter here.

John has autism. One particular paragraph in the letter grabbed me, I’ve read it over and over. In stray moments since Wednesday I’ve stopped to think about it, and it’s increasingly hurting my heart.

“I have tried to help Autism Speaks staffers understand how destructive its messages have been to the psyches of autistic people. We do not like hearing that we are defective or diseased. We do not like hearing that we are part of an epidemic. We are not problems for our parents or society, or genes to be eliminated. We are people.”


I am wondering, how many times has Caleb heard Eric or I talking about fragile X and internalized it? We know he is always listening, so how many times has he heard us describe the characteristics and felt…defined…by it? He understands much more than he can express, so how can we ever truly know?

You can look at me and see how much I love him and I know that he knows that I love him…but that doesn’t mean I haven’t hurt him. I am wondering, does he think there is something “wrong” with him? Does he think he’s anything less than perfect in our eyes? Does he think that he is fragile X? Does he know the difference between “being” fragile X and having fragile X?

I know the internal dialogue that I want him to have. That he is unique. That some things are harder for him, but everyone has something that is harder for them. That he is funny and fun and people like him, a lot. That lots of people love him. That he can do amazing things.

But is that the story I’ve been telling him? I’m afraid it might not be. I’m not sure yet how to do it but I need him to help me write a new story for us…one that will give him the inner voice he deserves. One that conveys all that he is because he is so very much more than just a boy with fragile x…

3 thoughts on “Time for a new story?

  • November 15, 2013 at 7:00 pm

    I know that you’re not really looking outside for answers here – that this is a public journey of introspection that you are sharing, but… There are two great books that I am reading that you might want to take a look at. “Bright, not Broken” and “You’re Going To Love This Kid”. Although neither deals specifically with kids who have FX (do any books?) I have found a lot to take away from both of them to inspire my own parenting.

    Thanks for sharing. I read your blog often. Hugs.

    • November 18, 2013 at 9:01 am

      Thank you, Tara! I will definitely take a look at those books.


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