By Kim Stagliano
2017 hasn't been an easy year. We lost Dan O in January and my Dad passed away 12 days ago at the age of 94. Dan and my Dad were the two men who called me a unique nickname - "Kimbo." Dan didn't know my Dad called me that - he came up with it himself. Not Kimba. Not Kimmy. Not OhMyGoshJustKeepTheSiteRunning. Kimbo. Even when my Dad could no longer hear well enough to speak to me on the phone, my Mom would say, "Richard, it's Kim on the phone," and he'd yell from across the room, "Hello, Kimbo! How are you!" I miss Dan every single day. And now, I'll miss my Dad too. But these are the turns that life takes, and I accept them.
Speaking of acceptance. I posted an important WhiteHouse.gov petition on our Facebook page last week, and here as well. Take Action to End the Autism Epidemic and Implement Comprehensive Reforms of Vaccine Safety Policies It calls for an overhaul of vaccine safety and to end the autism epidemic. Well, this brought out two strident commenters on our page. Sometimes we ignore these Facebook comments, Adriana, Cathy and I. We don't moderate FB too much - we haven't had to, most comments are from people like you and me who are just trying to get through the day taking care of their loved ones with autism. Two autistic commenters came in guns and assumptions blazing. I chose to respond.
We're less than a month away from the silly season of celebrating autism. April Fools Day lasts all month long for us. Autism is no joke.
Melvin wrote: "Yep better call a national emergency to stop people like me being born, thanks for that."
I responded: "Oh Melvin not at all. We are autism advocates. We're so sorry vaccines caused your autism. We're trying to make sure every baby is born to parents who can make healthcare choices for their babies and that every choice has safety."
Mary Kay wrote: "Adults with Autism don't want to be "ended." And here's where we break with you - we think you should be attacking Trump's K-12 schools disability protection waivers aimed at stopping IEPs and accommodations. Or, we adults with autism could simply marry each other, have lots of autistic kids, and demand the Country, though it stay united, be spilt [sic] in half with half where the autistic people live and half where the neurotypicals must go, just like tribal resevations. [sic]"
Melvin assumed we want to "stop people like him from being born." No. We want to stop vaccine injury. Mary Kay stridently told us we should be petitioning for education (not an unwise choice) and she suggested that people with autism should segregate into their own tribe.
My daughters ARE segregated by their autism. Special school programming. Special day programs. Just for autism. There are autism days at parks. Movies. Malls. Why? Because autism behavior can be so severe and so unlike any other diagnosis that it's just plain different. People with autism often can not live in traditional group homes - their behaviors prevent that. There is already segregation, Mary. Born out of the severity of the diagnosis. It's not pretty.
But Mary also got me thinking. This is why it's important to read differing points of view.
I answered her as follows: "Thanks Mary Kay. I would strongly suggest that autistic adults like you devote your careers lives etc to caring for the 1 in 68 as we their parents age. We'll need your help. And who better as you point out, to understand their self injurious behaviors, inability to sleep, stomach issues, lack of speech, etc? Yes, take care of your tribe. Open group homes for and by autistics. Create jobs. Become job coaches. We NT parents would welcome your expertise."
I'll sit tight for my answer.
Kim Stagliano is Managing Editor for Age of Autism.