Tuesday, March 28, 2017

Know Before You Glow

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It's coming. April is Autism Awareness Month and the "Light It Up Blue" campaign is about to be in full force.

Having a son with Autism, you are probably thinking I am stoked for the awareness campaign that Autism Speaks puts out each year. I am not excited at all. In fact, I have asked all of my family and friends to NOT light it up blue in honor of my children, as I do every year at this time.

I will spend April spreading awareness. I will share our story, share advice and information, and really help spread the message. But my lights will remain white and I hope yours will, too.

Before you jump the gun, I am also not in the "accept us how we are and do nothing to fix our medical issues" camp either. My son has real medical issues tied to his Autism and I can't sit by and allow his body to be sick. I make sure he has the medical care he needs for each issue that arises.

Autism Speaks doesn't use the funds donated to their organization wisely, in my opinion. They have VERY high paid board members (ridiculous for an organization with it's purpose). They waste their money and this is completely inappropriate for an organization that is supposedly all about people with a specific medical issue. If I donate my time and finances, I want to know it's being used for the purposes stated or intended, not so that someone can drive a Lexus or Bentley.

Last report I read, only 4% of their budget went to help families. Of course 22% went to fundraising, so they are spending more money raising funds than they are helping families, much more.

They support pre-natal testing for Autism. Now, that might seem like a wonderful idea. The problem is, there is a pre-natal test for Down Syndrome which is very often wrong (false positives) and have lead to more abortions than I can count. I would support a test done the same day of birth or later on an infant. More knowledge would help the parents. But Autism is not a life ending disease that we must know about before a breath is taken by the baby in order to make sure we deliver in a hospital that can handle the medical needs. Pre-natal testing means really one thing ... abortions.

It might shock you to learn that not one single person on the Autism Speaks board actually HAS Autism. What a sad state of affairs that is. There are so many men and women well qualified to sit on the board that could give first hand, real world experiences with Autism to this organization. They have none. Oh, they had one. He quit. He said they were demeaning to Autism. That speaks volumes.

If you look at where the money goes they raise, you will see that it appears they are fundraising to line their own pockets, that the board members and such are the people in need and they toss out a few bucks to shut up the IRS on their status. They do very little research and most of that has nothing to do with true cures for the medical side of Autism, to help improve therapies and treatments for our kids, and to better their lives.

There are many organizations out there that do use your money wisely. There are even local organizations that are very small but are doing mighty things in the Autism world. You could even donate to a therapy center or a family living with Autism. But please, do not light it up blue, wear your blue shirts, or buy your blue ribbons and puzzle pieces. Give support to families that need it and donate to organizations that respect your finances.

My porch light will be white like it is every day of the year. Please know before you glow.


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