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Credibility in Autism?? Who Do We Trust?

By on August 5, 2010 in Autism

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

By on August 4, 2010 in Autism

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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A Challenge to Tony Robbins: Get Involved in The Autism Community

By on July 31, 2010 in Autism

Yes you’re a great motivator and the inspiration guru to the stars, but I’d like to see you step up to a truly great challenge and get involved in the Autism community.

Let’s face it, motivating people that seek you out (so there’s already something there that they’re just waiting to hear) and are readily able to pay for the tickets to your show, or ebooks or premium services on your site or what ever else… that’s all well and good… but it’s not a real challenge for a man like Tony Robbins.

I want to see you walk into a house and prevent something like this from happening: Murder Suicide Involving Mom and Son with Autism

I’d like to see you contend with children that won’t look you in the eye, that won’t answer your questions, that throw a tantrum at the drop of a hat… I want to see you talk to the parents that give up their cable, telephone and other luxury expenses to be able to afford their child’s diet and therapy sessions and try to motivate them.

Mr Tony Robbins, I really do like your work, honestly I do… it has no effect on me and I don’t feel inspired in the slightest however, but that’s not your fault… it’s mine. I know that I’m not the only one though, I know that there are many of us that know that our children will never be able to attend your seminars because they would never be able to handle being in a crowded room of screaming people with lights, sound systems and everything else. I know that many of us would never be able to afford the tickets anyhow.

I also know that it’s not a good business decision for you to get involved in the Autism community because no one makes money helping people that have no money. It’s good for public image but between you and I, I know you don’t need much help with that anyhow.

All the same though, I’d still love to see you get involved. I’d still love to see moms and dads and lonely people with Autism brought back from the brink and helped out by those who have the ability to do so.. you are one such man.

We don’t need a spokesman, we don’t need a celebrity to bring awareness, we need honest to goodness support and compassion… quite simply, we need help.

We’re the Autism community, we support each other and try to pass along words of encouragement knowing no one can see our tears while we sit at our computer keyboard…  but if that news story and the dozens like them are any indication, we’re just not strong enough. There’s too much to live with, too much to deal with and, because this is our children we’re talking about, there’s too much at stake.

You talk about challenges during your seminars, well… I’m putting this one out to you, because I respect you and I think (in the extremely unlikely event that you should ever even read this) that if anyone could say the words necessary to stop news stories like that from becoming more frequent… it’s you.

What do you say?

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School, Camps, Programs, Therapies… Remember to Take a Break!!

By on July 29, 2010 in Autism

Parents can easily become overwhelmed having to deal with all that entails a child’s schedule… there’s school, extra curricular activities after, there’s camps, programs, summer get aways and if your child has Autism, then there’s also therapy sessions, other camps, group sessions and so much more.

Wait, the parents can be overwhelmed? Just imagine how the children must feel!

Naturally, not all children are created equal and so many will be just fine with all that there is to do.. after all, children don’t seem to run out of energy like adults do. They just move from one thing to the next and keep right on going.

This generally isn’t how it is for children with Autism though, at least not in my experience. All of these things are really great and essential to treating the Autism within your child, to helping them over come it and break through. However, when my son gets home from school on a Friday afternoon, you can visibly see the tension that has built up from a solid week of it.

When you start to add up the school days, the friends visiting, the therapy sessions, the camps, groups… without down time, your child might get progressively more and more overwhelmed and possibly even regress. That means that all that you accomplished with the school and therapies and such would be for nothing.

One of the things that bugged my wife and I early on was how other parents kept pushing “me time” on us, telling us how great it’ll be when the kids are in school or day care or off to a baby sitter… it’s not the notion that bugs us but how much people seem to think that it should be done to excess.

It’s as if people are eager to “pawn off” their children at the first available opportunity so that they can have someone else “deal with them.” This does not go over well with me nor my wife because we’ve come to realize that the more family time we can get, the better our Autistic son does.

That’s not to say that one extreme is better than the other… we can’t keep him from every therapy session, never let him go to school and never socialize and hope he’ll be ok… we just have to recognize when it’s been too long and step back and maybe go to the beach or something.

Family time, it’s not something to be feared! It’s also not something to be scheduled for that one 2 week period that you get vacation time. There are evenings and week-ends you know! Don’t be afraid of your kids, do stuff!

The moral of the story is, too much of anything is not a good thing.. unless it’s love, of course. Your children can’t spend all their time away just as they can’t spend all of their time with you.

If your child is in school, camps, summer programs and more and you find there is no break, or if you find that your child is not only benefiting less but even regressing to a point… there’s no harm in taking a break and just being a family. They won’t “lose what they’ve learned” nor will they “miss out” on anything they could have learned.

Your child needs that security, that love and that comfort that only you can provide. Don’t deprive them of that in your search to get them “back to normal.”

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The Two Videos That Will Change The Way You Look At Autism Forever

By on July 27, 2010 in Autism

Today’s been quite the day for revelations for me… it happens rather often when you become a parent of a child with Autism, learning new stuff all along the way. It happened when I saw the Temple Grandin movie and it happened again today when I watched not one, but 2 videos.

These two videos are rather similar yet depict 2 different people… both of them, women with Autism that are unable to speak. They’re not 4 or 5 either, one is an adult and the other is a teen. They both display the normal severe Autistic traits such as arm flapping, screaming, fits of rage, repetitive motions and so forth and both of them are truly brilliant.

Both of these women found their ‘voices’ when they discovered computer programs that would speak for them when they typed and they typed real thoughts, real feelings, real expressions and do so remarkably well… better than most people I know in fact.

What you will see is an example of what you and I perceive, their Autistic traits and then, if you have the patience to continue watching the videos, you will then see them explain exactly what you were actually seeing.. what was happening in their mind, what was happening to make them do what they do.

And hopefully, like myself, you’ll have a revelation… you see, like most everyone else, I thought that severe Autistics were “trapped in their own world” or unable to cope…  mostly, unable to communicate.

But having seen these videos, I don’t think those things anymore. Well, watch the videos and hopefully you’ll see what I mean.

Carly’s Voice

In My Language

I would love to hear from you, how did these affect you? Has this changed your perspective? Does it give you (more) hope that there’s brilliance “trapped” inside someone you love with Autism?

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