Archive | August, 2010

Autism Community: What is Politically Correct? How do I Not Offend Someone?

This goes along the same lines as my last post, where I feel people need to stop being so childish… how do I talk about Autism without offending someone?

I’ll give you some examples… when I talk about Autism being a source of strength, something to not just overcome, but to master and use as a way to make yourself even better, I get attacked by those who have a loved one with Autism that is unable to speak, hurts themselves, will never move out on their own and never really have a life of their own.

On the other hand, if I try to speak up for those people and help people see just how ugly Autism can be, how stressful and depressing it can be on those who have it and those who sacrifice so much to care for those people… when I try to show people just how much of a disability it can truly be on a life long scale… I get attacked by those who have Autism and use it as a sword to attack us “neurotypical” people who don’t really know what we’re talking about.

Now obviously, I’m talking about small percentages of the over all population, most rational people wouldn’t attack me for doing either as I’m only trying to raise awareness and trying to do so for the greater good of all parties involved. However, there are still those out there who feel I’m making an effort to undo everything they’ve worked to accomplish.

Those with Autism that live on their own should feel proud and should hold their head up high… if they’re proud of having Autism (or Aspergers), then I will join them in telling the world.

And if those who cry more than they laugh because their children will never have a friend, never learn to talk, never be able to go out for a nice quiet meal and so on and so on…. I think they should be allowed to speak up too, and make sure the world hears them when they say “we need help, we need to stop this!”

But how do you do one without offending the other?

I’m not entirely sure there is a way, to be honest…. unless everyone can agree to stop being offending in the first place.

You can be proud of how you’ve learned to use Autism as a strength instead of a weakness, and still feel compassion and reach out to help those that see Autism as a life destroying disability in their own house.

And you can completely hate and feel defeated at what Autism has done to your family but still congratulate and be proud of those that have overcome and used their Autism to accomplish great things and have a good life.

We have enough fighting going on over which doctor is right and which one is wrong, we really don’t need to be fighting amongst ourselves.

The one thing all sides of the coin can agree on is that Autism is a spectrum. That doesn’t just mean several shades of good nor does it mean several shades of bad. It means going all the way from super human brilliant all the way to non-verbal self-inflicting violence.

Anyone being offended one way or another is either not as aware as they thought they were, or they’ve allowed their emotions to hide what is truly important… supporting each other.

I’m sorry if I offend anyone, but I’m not going to stop raising awareness for those too tired or depressed to do it themselves… and I’m also not going to stop being very proud of those with Autism that are doing well in life.

I will not stop if you’re offended that I think Autism is wonderful when it is doing such terrible things to a loved one and I will not stop if you’re offended that I think Autism is truly disgusting even though it’s making some people truly exceptional.

I will not stop.

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Credibility in Autism?? Who Do We Trust?

The funny thing I’ve come to discover while making my way through the online Autism community is that, depending on who you talk to, everyone has a hidden agenda, everyone has something they’ve done wrong, everyone is a liar, a cheat, a fake, a phony and everyone knows nothing about anything.

Don’t go telling me that I’m not right, that you know someone who’s really great or really smart, because for every person you tell me about, I can find someone else cutting them down.

How the hell did it get like this?? Aren’t we all wanting to make our children exceptional? Aren’t we all wanting the same answers?? How did we become so cynical??

Well, unfortunately, this has a rather long history… we have some who call ALL EXPERTS phonies due to their past. As ignorant as it is, they disregard anything and everything they say because 50 years ago, the experts thought that Autism was caused by “refrigerator moms” that didn’t love their children enough. Because of that, here we are 50 years later with people still holding that over their heads, as if they haven’t learned anything since then… as if these 20 year old doctors were even there 50 years ago at all!!!

Then we have the fine folks at Age of Autism who cut down and verbally chastise anyone and everyone that doesn’t fit their anti-vaccine agenda… they even call themselves journalists but won’t cover any story that isn’t anti-government, anti-pharmaceuticals or anti-vaccine.

On the other end of the spectrum (pun intended), we have Autism Speaks that has no one on the spectrum on their board, they have disregarded the vaccine issue all together and have some rather questionable research into certain genetic areas including prenatal screening (meaning that moms could opt for abortion if Autism is detected).

Who do we trust?!?!? Well, it branches out from there for the most part. We have doctors and scientists and experts and parents that latch on to what ever is most profitable or is simply what it is that we want to hear.

That’s where the whole system breaks down. For every single study you can show me, I can show you another study that says the opposite. And so we fight!!!! We bicker and argue like children because we’re all told the information that we want to hear! And we believe it!!

You have a doctor with a laundry list of broken ethics, he’s been disbanded entirely and people still believe him!! And why?? Because he says what they want to hear.. what they believe to be the truth.

Well, why is every other doctor not credible but suddenly this one doctor is??  Simple, he says what they want to hear, it doesn’t matter how many laws he broke, children he hurt, hidden agendas he has or shady payments he got.  They want to hear it, he says it, it’s the truth… and they will fight for it. Did he do all those things? Those who believe him will tell you no, those who don’t will say yes. Who is right!?!? And if I could provide you with absolutely concrete proof one way or another, would you believe me or still dismiss it because it’s not what you want to hear??

Things fall apart so quickly… we quickly go from trusting these experts that are there with our best intentions at heart to not trusting a single one of them because they contradict each other and ultimately let us down by giving us no real answers.

Amongst all those contradictory answers are the ones that we want to hear. No one knows which ones are the truth… NO ONE KNOWS… but we hold up the ones we want to hear like a gospel that is unbreakable and must be told to everyone. We close our minds to opinions or even facts to the contrary and verbally cut down anyone that questions it.

We need to wake up, we need to stop acting like children. Seriously, I’m really getting more and more disgusted the more I read into it. We need people to focus the arguing/fighting time into reading and research time and soak in more information… not to be able to decide who is right, but just to learn! Don’t go looking for ammo for your next fight. Go looking for knowledge for the sake of knowing it!!

Change your mind set people. Don’t close your mind once you hear what you want to hear. Find a study to the contrary, study it and see what the differences are. Find someone that discredits a doctor and consider it and seek out more info. Don’t just dismiss it cause it’s not what you want to hear about your favourite doctor.

Here’s my rule: If no doctors are credible, then no one doctor is. You are not free to just choose one. The moment you contradict yourself to me, I’m done listening and will seek out the information for myself.

Do I think IVF causes Autism? No. Do I think vaccines cause Autism? No. Do I think C-Sections cause Autism? No. Do I think environmental toxins cause Autism? No idea.

Can I be proven wrong, absolutely. I’d love to be proven wrong! Do more studies!!! Prove me wrong!! Please!! Because I am ok with being wrong, especially if it means we finally have answers. Please don’t be afraid to be wrong. Our children are much more important than our pride.

And that is what’s important. Not who is right. Not who is wrong. And your little name calling, fighting and bickering is definitely not what is important. Only, our children, only the answers… and the more you fight, the longer it’ll take to get those answers.

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When It’s Best to Not Speak Up

I tend to have regular periods of down time, that is… feeling really defeated, really overwhelmed… like a total and complete failure. Actually, I feel like that all the time but sometimes it really drags me down more so than others. The struggle I have at these times is whether or not to reach out for support or words of encouragement or just keep it to myself.

Most of the time, like 99% of the time, there are no words of encouragement that will get me out of it… pretty much, I just have to ride it out until one day I wake up and the feeling isn’t so bad.  Still, I tend to keep hitting facebook or twitter or anywhere and everywhere with some rather negative and depressing messages because there is simply nothing else that I can write.

The end result is that a few times a day, I end up typing out something that I really want to hit enter on but never actually do. People are going to ignore it anyway, or not know what to say or in those rare times, actually say something nice to me and I’ll dismiss it anyhow.

The point I’m getting at is, in the Autism community online, we are all there to support and motivate and share stories… we’re also there to help pick each other up when we’re feeling down but sometimes, when you are just going through a rough patch, it’s best to just keep those sites closed, or keep the keyboard away from yourself.

I could go into a bunch of ‘techniques’ to perk yourself back up, such as getting out of the house, indulging yourself in something you enjoy, what ever… but it’s so much more simple than that. If you know that you may wake up feeling better tomorrow or one day soon, then just don’t speak up until then.

People won’t forget about you, people won’t have lost interest in you… there’s no harm in taking a breather even at the best of times, so don’t feel bad taking a breather at the worst of times too.

Now, that’s not to say that when times are truly difficult that you can’t feel terrible and reach out for support and help… that’s different. I’m just talking about the low patches we all get at random times when we just feel defeated and your only intention is to share negativity with others.

There’s an old expression: “Don’t drag everyone else down with you”. It’s a very difficult urge to resist but sometimes just knowing you resisted that urge is enough to help you feel a little bit better about yourself and thus, break out of that funk.

I have a lot of experience with this, I get into those ‘moods’ a lot. If you don’t see any updates from me for a few days, chances are, that’s why. I’m just taking a breather, I’ll always be back.

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