Archive | July, 2010

Something That Upsets Me: When One Autism Parent Tells Another Autism Parent “How It Is”

Now don’t get me wrong here, I’m not talking about people offering support or advice, I mean the ones who outright tell you that you have to put your child on a diet, they tell you that vaccines are what caused your child’s Autism, they tell you that you have to do what they’re doing and they tell you that they are right….  which obviously implies that… you are wrong.

Now, I have my opinions on some things such as the vaccine debate, but I never force that on anyone. I have my opinions on the diet, as the gluten free portion really helps my son but none of the rest of the diets do. We all have opinions! There’s nothing wrong with that.

But please stop trying to tell me or anyone else what you ‘know’ (when what you mean is ‘think’) is true.

First of all, there is no definitive answer to the vaccine debate, no matter how certain you are, the diet does help some, but not all and every single therapy and drug out there that helps one child also does not help another.

Autism is a trial of hit or miss, a life time of “try everything” where you quickly become a researcher, doctor and psychologist all in one despite the fact that all of your degrees are found through hear-say from other parents, the doctors at your family clinic and Google.

Most recently, which is what set this post off, a woman replied to another parent’s question on what to do, with one word: “DIET” and went on about it and included how [she believed] her children were harmed by antibiotics or vaccines, including a little disclaimer: “Pretty sure everyone else’s avenue there is similar (vaccines OR antibiotics).”

This really quite upset me, and I was so tempted to lash out in response but instead, I did reply but simply stated that no.. not everyone is similar.

The fact is, not every parent believes that their child was harmed due to antibiotics nor vaccines. So please, do not speak on my behalf.

While I sat there, tempted to hit the submit button with all my anger and frustrations typed out in a rather emotionally charged response, I thought about why it angered me.

I think that I just come to expect more from people dealing with Autism. It’s true! Think about it, Autism is a spectrum disorder, that means that no two cases are identical. It also means that symptoms, causes and treatments can be and mostly likely are different for most Autistics.

It’s the one thing that all scientists, doctors and hopefully even parents can agree on… my child with Autism is simply not the same as your child with Autism.

So I just sort of expect that other parents would simply speak to each accordingly… that they’d share THEIR experiences and what works with them but never presume to tell anyone it’s what they have to do… that they’d share what THEY think caused it but never presume to tell someone else that it’s their problem too.

It angers me, it really does. I write this blog to share my experiences with my son so that hopefully you see something that inspires you or makes you think “hey, maybe we could try that!” Maybe it’ll help you and your child, maybe not. But I’d never write something saying that you must do what I did or think what I think.

I’m sorry that this isn’t your typical, feel good, type of post from me but I feel I had to let it out, otherwise there would be twitter and/or facebook replies that would start a whole mess of arguments that really didn’t pertain to the situation or help in any way.

So feel free to reply to me here, if you disagree or wish to share. That way we can keep valid questions/support free of needless digression.

Comments { 2 }

Sometimes I Think That Autistics Have It Right

When you boil down “Autism” to it’s core, by most definitions, it’s a lack of ability to communicate and socialize, usually derived by an inability to understand or “get” people. People with Autism have a hard time figuring out what it is that people mean by the things they say, they have a hard time knowing when a person wants to speak up or just listen or what their tone means.

For the most part, we as a society think they’re the ones with the problem, they can’t figure out what we do… but when I think about society and all the greed, two faced, double talking, innuendo, plays on words and so on and so forth, maybe they’re confused for a very good reason.

When I stop and think about it, when I really sit down and think about what people around me are saying, very little of it makes any real sense. If my brain wasn’t working over time to understand the context, the slang, the double meanings and the hidden messages… it would all seem very bizarre to me.

We, as a people, have messed up our languages in so many ways, over using sarcasm and irony to a fault, throwing in double meanings into everything to sound witty or smart….  actually, when I think about it, perhaps all men have a touch of Autism because let’s face it, not one of us understands the ‘hints’ and ‘signs’ from women.

It gets worse… I have approximately 20 teenagers in my facebook friends list including family, babysitters and so forth and not one of them can spell very well, not one of them understands grammar at all and not one of them cares. Those teenagers will grow up to be adults that will speak very differently from how I speak. Do you think what they speak will be easier or more difficult for an Autistic person to understand?

What I’m trying to say is, maybe it’s not those with Autism that have the problem. Maybe it’s us. We’ve perverted our language so much that half of the time, we don’t even understand what it is we’re trying to say anymore. If the internet is any indication, we’re losing our basic skills and replacing them with faster, more convenient, lack of skills! How many times have you seen someone use ‘loose’ instead of ‘lose’? Or ‘there’ instead of ‘their’? There’s a million examples and it’s only getting worse.

If you know someone with Autism and they have a hard time understanding you, maybe it’s not them… maybe it’s you. Slow down, think clearly about the message you’re conveying. Chances are, if you think about it, it’s not the message you actually are telling.

Comments { 0 }