Wednesday, April 6, 2011

An Emo Post on Autism

There is a story that's making headlines on the news here. A woman with a severely autistic child who developed non-hodgkins lymphoma is on trial for not giving him his meds. He died. Its a terrible tragic story & its KILLING me. And its not for the reason that its probably bothering most people. See, I understand. I can put myself in her shoes. I live with a child with Aspergers (a mild form of autism) day in and day out. I remember what he was like at six. I remember what he was like at nine. (This child developed NHL at six and had been thru multiple treatments for it.) People are calling this mother a murderer because she didn't give those meds that might have saved her child's life.

People know nothing.

I wonder how many people understand what its like for these kids just to get thru a day? Do they know what its like as a parent watching your kid struggle day in and day out? The anxiety & depression these kids experience with each failure? I wonder if they know the heartbreak of watching their kids bullied not just by other kids, but by adults? I wonder if they've ever had to deal with complete strangers coming up to them to tell them how to discipline their kid? I wonder if they've had friends and family accuse them of being a bad parent? Had people avoid them like autism is contageous?

I wonder if they understand the sensory problems that go along with autism. Do they know these kids are challenged by eating certain textures and colors of food? Do they know that swallowing a pill can be impossible & send them into a tailspin of hysteria that they can't function for days afterward? Do they understand that some can't stand to be touched unexpectedly? That is causes them physical pain? Or that loud sounds feel like someone jabbing knives into their heads? Do they get that a smell can make them vomit? Or that too much motion or noise can cause their brain to go into a neurological meltdown that sends them into a screaming, crying fit on the floor? What is it like as a mother to have to put a child with autism thru cancer treatments? Especially if that kid is severely autistic and can't even understand what's happening to them? What does that do to a parent?

Do they know that these kids function on a level of fight/flight every minute of every day like they've just been in a car accident and almost died? Do they know how unfriendly and unaccepting the world is to them?

I want to hug this mother. I want to tell her how sorry I am. I want to tell her I understand. I want to see the media stop crucifying her for choices that they can't even imagine the horror of.

The second story was about a third grader who had a meltdown in school, threatened his teachers and was maced by the police. I watched this kid being interviewed by a reporter who seemed to think it was her duty to teach him right from wrong - like his mother wasn't there & hadn't done her job. This kid is special ed. They said he was in a behavioral class. I watched for 2 minutes...and I know KNOW that this kid has aspergers. It doesn't take a genius. All the signs are there. Has anyone suggested that to this mother? Has this kid been tested? Or is he just labeled a behavioral problem and shuffled off as not salvageable? Its obscene. This kid didn't make eye contact, he talked in an odd speech pattern, he intellectually understood his behavior was unacceptable, and he explained that he shorts out. He melts down! It started because the teacher was switching activities and he said he wasn't done with what he was doing. Classic aspergers behavior. Change is bad. Change is confusing. If these teachers understood, they would be using techniques like preparing for change (warning its coming over an interval of time so the change can happen) and they would know how to redirect a kid heading into meltdown & have a safe place for him to meltdown. But no! They escalated the situation until the kid felt he had to physically protect himself, locked themselves in a room & called the police. The police didn't even try to de-escalate. They maced him and put him in handcuffs EVEN THO THEY KNEW the mother was less than ten minutes on the way & rushing there.

I want to talk to this mother and tell her to have her son tested. I would put money down on him having sensory issues. I know in my heart he has aspergers. He needs help but instead they label him behavioral (its totally neurological) and treat him like a criminal. No one is even trying to help this mother. What is wrong with this world?

Autism (and aspergers) is on the rise. The latest numbers say 1 in 101 kids have it. That's astronomical, considering 10 years ago it was 1 in 1500 and 20 years ago it was 1 in 10,000. (My son believes its genetic mutation to deal with technology advances.) But because our kids look normal, they're expected to be normal. Autism is a hidden condition. It doesn't show up in physical features. It's in the brain. I hate the world some days. Damn it.

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