Friday, October 05, 2012

Autism Sucks And Then We (or They) Die

Earlier this week I ran a post on HuffPo called Autism Sucks and Then We Die. It was a general audience version of a post I'd run here at AofA - trying to call attention to the ever advancing manmade autism epidemic and the real fears families face as we, the parents, grow older.   And ultimately die.  I try to engage commenters at HuffPo by responding to their comments, both those that are favorable about the post and me and those that take me to task. I can learn from everyone, and in particular, I have appreciated learning from people who themselves are on the spectrum. That might come as a surprise to some - it shouldn't. My writing style is pretty much my personality - open to conversation, sociable and ready to have a heart to heart or a head to head talk.

In particular, some commenters who said they were on the spectrum took my headline "Autism Sucks and Then We Die" to mean that I thought they themselves sucked. One went so far as to define himself not as autistic, but as autism itself. "I AM AUTISM." I promptly and politely disagreed. Autism is a medical diagnosis, not a option on the US Census.   I was quick to say that I did not say that people with autism suck. And I told them of the old song by a Boston Band called "The Fools" from which I took the headline, having grown up in Beantown and heard the song many times:

Today in my Google alert there was a story that gave me a familiar pit in my stomach. Autistic Boy, 11, Dies After Hit By SUV. Another child whose life was cut short by his autism. Sure, some folks will say, "kids are struck and killed by cars every day, Kim." Yes. And kids drown every day too. But take a look at the headlines and tally up how many have the word autism in them. It's gotten to a point where when I hear "drowned" my very first thought is "Did the poor child have autism?" From the Houston article:
The boy has special needs and was in the care of his father when he wandered away as the father was doing laundry, said Estella Olguin, spokeswoman for state Child Protective Services.

Houston police officers said that Desmond Thomas, 11, who had autism, was with his parents at a nearby home, and he left the house by himself as his dad folded laundry about 7:30 p.m.
Another story quotes his Mom, "He was very impulsive and would jet as soon as he got a thought in his head," said Tina Thomas, Desmond's mother. "We never knew what he was thinking."
"He was being watched," Olguin said, "but he just wandered away. It's tragic."  I'd write a bit more, but I think that last sentence sums up what I was trying to say on HuffPo. It's tragic. And I have to go update a blog called Lives Lost to Autism - something I do all too often.
RIP Desmond, and our hearts go out to his family.

1 comment:

Roger Kulp said...

Hi Kim,
It's been quite a while,but I'm still out here.I know all too well what it's like to come close to dying while being out wandering or eloping.In my case,being hit by cars,and just getting injured.I have heard a lot from parents who say their kids are just wandering away because they are curious,and want to go see something.That's BS.If other kids are anything like me,there is a medical reason behind it.

I have two or three different types of seizures.One of these leads to episodes of "dementia",that can last anywhere from ten minutes to an hour.You are barely aware of your surroundings,and unable to talk.That's when you wander.Then you snap out of it,with no idea how you got where you are.

For me what stopped it dead,was leucovorin,in any dose.I started three years ago,and have been gradually upping the dose.That's what I wanted to tell you about.

I have just been diagnosed with one of these new types of Cerebral Folate Deficiencies that are unique to autism.They no longer have to do a spinal tap.There is a new experimental blood test.

These are very complicated diseases,part autoimmune,part metabolic.There is a wide range of severity.There is usually a second metabolic disease that goes along with CFD.It is usually mito,but not always,as Dr.Rossinol said in his 2011 presentation at Autism One.I have something called methylmalonic acidemia,an error of B12 metabolism.

There is also a lot of immune disease that goes with CFD.I just found an August 2012 article from Spain,that links CFD with hypogammaglobulinemia.This could explain vaccine regression in some of these very sick kids.I have a life of serious immune disease,we are now starting to figure out.

For me leucovorin has been a miracle.It kept me out of a group home when my mother died in April.So it kind of ties in too.

I still see the DAN! you hooked me up with after my 2009 post at AoA.He is the one who ordered all the tests that got me here,as well as my leucovorin,and high dose B12.

Please go to Dr.Frye's article at Nature,and especially the chart in figure 1,that gives detailed family histories of these kids.Pass that chart along to as many families as possible.For many families it could be as much of a godsend as it was for me.