Update March 13, 2016: Bill has responded to the letter and clarified his statement. Read in the comment section for his point of view! Thanks Bill!
I recently saw your video on upworthy. In your video, you talk about the challenges of growing up with a severely autistic child, how you and your wife essentially founded a learning center, and never, never, never, never, ever gave up on your child Chris. I am sympathetic to your struggles, and I highly respect what you have done for your son and other members of the autistic community. That being said, I do not know a whole lot about the spectrum of autism, but I am happy to learn, on any given day. Unfortunately, you seem to not show the same courtesy to other conditions. Imagine my surprise when in your video you declare:
“Chris has had one of the worst diagnoses ever. Self- injurious, swollen intestines, poisons in his systems, neurological damage, mental retardation, severe autism, almost a Crohn’s Disease”. (0:22-0:32)
I have watched this video over and over, to double-check, to try to see if I am parsing your words the wrong way or whether I am misunderstanding. I even read the transcript.
Now, I am sitting here, and wonder what exactly do you think Crohn’s Disease is? Seriously, I want to know.
I can tell you what it is not.
Crohn’s is not self-injurious, unless you are trying to say “auto-immune” here. If that is what you are trying to say, never mind. “self-injury” however refers to the specific, conscious act of harming yourself. And I can assure you nobody with Crohn’s (or Colitis Ulcerosa for that matter) is harming him or herself as part of the disease.
Swollen intestines, sure, it CAN be part of the Crohn’s Disease symptoms, but you see, it’s a rather complex disease, and symptoms can be anything from mouth ulcers to eye infections, to joint pain.
Poisons in the system. I honestly have no idea what you are talking about here. Do you mean that content of the intestines has leaked into the rest of the belly? Perhaps? An overproduction of bile? Seriously, I don’t know. But in all the books I’ve read about IBD, in all the blogs I have read, in all the conversations that I have had with countless doctors, the phrase “poisons in the system”, did not occur. Not even once.
Let’s put the next three together: Neurological damage, mental retardation, severe autism”. What on earth makes you link this to Crohn’s Disease? I want to know. Can people with Crohn’s have autism? Yes, but they are not the same disease. Autism is not a symptom of Crohn’s. The same goes for mental retardation. Of course there are people out there suffering from both, but they are not the same disease. But the way you have phrased it, it’s all part of the same package. Worse, it’s not even that. It’s ALMOST Crohn’s. So, your son had all of these symptoms, but at least he didn’t have Crohn’s, is what you’re saying here, because Crohn’s is all that and more.
So, pray tell, what, in your opinion, is Crohn’s disease? Actually, I don’t need your opinion, because having had the disease for 32 years, and having informed myself as much as humanely possible, I don’t need your opinion, I know the facts.
You know who never, never, never, never, ever gave up on me? My mother. My mother who was faced with exactly the same misconceptions like the ones you are spouting in your video. People asked her with pity in their voices, whether she thought I would make it through school. Who spoke slowly with me, because you would never know how much I understood. Or who thought I had eaten rotten food to get attention. Or who thought that it’s all a bacterial gut, and boom, with a little bit of yogurt and yeast, things are gonna be fine.
There are countless other moms out there, with kids that have crohn’s and colitis. There are millions of other IBD sufferers out there, who are fighting the stigma on a daily basis.
My husband says, I may have misunderstood. That there was a comma in the sentence- i.e. you are listing your son’s symptoms and then add “almost Crohn’s” to the list. I thought about that, but even that doesn’t make sense. You don’t have the disease “almost” either you have it or not.
Chances are your video will go viral. It’s on upworthy, the general feelgood website. It’s on Andrew Solomon’s website. I know, this tiny section is not the main point of the video, but your family’s triumph is. And it is amazing, laudable, fantastic what you have done for your son and others. But even if your sentence was just sloppily expressed, and bore no evil intention, it is still upsetting, to say the least. Imagine I made a video, in which I talked about a medical condition, and randomly threw in autism, or “almost autism”. Sounds familiar? Yes, because the autism community has experienced this countless of times. You should know better.
I am wishing you and your family all the best in your endeavors. I support your community. I wish I could say the same about you.