STILL Not Lighting It Up Blue

close up image of electric bulb explosion

As the mother of a beautiful child with autism, I’m supposed to “do” all this stuff this month to make you all aware of autism.

But I’m pretty sure you’re already aware, aren’t you?

We are those parents on the sidelines with kids on a “spectrum” that ranges from “can’t you shut them up” to “shouldn’t she be in a special school” and “why is he is so weird?”

We are those parents that watch Hollywood stereotype our kids as amazing geniuses who save the world, while in reality we’d give up that uber-intelligence of theirs if they could just express themselves or stop biting their arms or have a true friend and maybe date one day.

We are those parents who are being hit from all sides, telling us that we’re doing this wrong or that wrong (don’t avoid spanking, don’t medicate, don’t change their diet, don’t use alternative treatments, don’t take your child’s crap) that makes us want to scream because we know no two children are alike and what affects mine may not affect yours.

We are those parents who have given up on doctors because, unless they had a child with autism, they rolled their eyes at every single question we asked and offered a script before even studying my kid’s gut or brain or anything outside their APA approved autism checklist.

We are those parents who have tried and given up on ABA and conventional therapies and several homeopaths and biomed for this or that reason, be it income or difficulty or it just PLAIN wasn’t working or a provider didn’t give a hoot.

We are those parents who don’t have an ounce of strength or energy or money left to plan the happy future we want for our children, so we keep working on helping them do better now.

We are those parents who understand that the word “regression” is not just a simple scientific term, it’s a heartbreaking result that happens over and over again and makes us feel powerless and useless.

We are those parents who will never give up on our kids, no matter what it takes, no matter what you say.

But we are also those parents that are so tired, so lost, so defeated on some days, and sometimes, on most days, that we just don’t know what to do next other than curl up in bed and hope tomorrow is better.

Hope is coming, though. For those of us who believe that autism is at least partly medical (good science shows it!) and who believe that environmental toxins contribute to it, there are hopeful things happening.

  • Because of Vermont’s legislation to require mandatory GMO labeling effective this summer, companies are willingly labeling their products across the whole country. Separate labels in one country don’t make sense! Why does this matter? Because in 2014, Stephanie Seneff, a researcher from MIT, discovered a link between GMOs, glyphosate and autism. Removing toxins works.
  • The TriBeCa Film Festival’s rejection of its scheduled film, “VAXXED,” which explores accusations of corruption within the CDC particular to autism research, has caused a landslide of interest. The film is now showing at the Angelika Film Center in New York. Shows are selling out.
  • Bob Wright, who founded Autism Speaks because his grandson had autism, and who at one point broke with his own daughter, who believed that autism is medical, gave an interesting interview to Matt Lauer on NBC News, where he states,
    “There is no definitive answer, but we have not been able to determine that autism is caused by vaccines. However, there are lots of issues having to do with the vaccine safety program that I got into very deeply with no agenda early on in autism. We proposed, along with a series of doctors, some changes that could be made. If vaccine safety, it’s a passive program, and if you made it an active program, I think that would make it better for everybody….There is no direct tie to autism, but there’s a $100 million a year that the Vaccine Court pays out to people for damages with vaccines, not specifically autism but a lot of them. There’s always going to be an issue with vaccines because all vaccines are the same, and all people receiving them are different.”

    Watch for yourself at the 3:13 mark:

Note that saying, “We have not been able to determine that autism is caused by vaccines” or “no direct tie to autism” is not the same as saying that there is no link. AS has not funded a lot of projects even looking at environmental causes, much less vaccines. I did find this one grant for a 2 year study awarded way back in 2009 but see no results.

And, AS under Wright’s leadership was supposed to do more research on environmental causes but yet again, that fizzled out. In fact, looking at their research, I only found 5 studies researching GI issues (which as we autism parents know, is almost always a problem), and only 3 with any reference to epigenetics or methylation. Mostly they are looking at genetics and behavioral issues, or treatments. Only a handful refer to toxicology, and mostly for things like pregnancy exposures or pollution. Anything else with a medical or environmental focus (just a few) tended to be from years ago, before 2010. Go search for yourself.

The news is not all great, though. Yesterday the CDC just released the newly update autism rates, which are exactly the same as last time: 1 in 68. I write that, and yet in my heart, I know it’s wrong or fudged. (The CDC fudging data – the whole point of the movie “Vaxxed” and the testimony of the CDC whistleblower, Dr. Thompson.)

I find the results of “no increase” hard to believe. Dr. Seneff also said that if rates continue to rise as they are now, out of every 2 children will be on the spectrum by 2025. Perhaps the CDC doesn’t want to start a panic? Talk to some people with kids in school, elementary or early middle. Odds are you’ll find kids on the spectrum or with the now defunct Asperger syndrome diagnosis. Or just go anywhere that caters to kids and look at all the kids around you with problems, then keep in mind that those are the kids capable of getting out of their house. There are many more who are too disabled by autism for parents to feel safe or comfortable taking out.

I don’t understand the point of lighting it up blue, unless it’s just like pinkwashing: a way to make a buck off of you, rather than help kids who are truly in need. Whatever is causing autism, I can’t help but believe it’s a toxic mix of crap going into our kids’ bodies – by mouth, by nose, by skin, by blood. When you see food light up a RADICAL change in your child’s behavior, you know it’s true.

Bottom line: You don’t need to be made aware of autism. Just look around you. And while you do, ask yourself, what could we possibly be doing to ourselves that it’s increasing to this extent.

You don’t have to go far at all to find logical answers.

For more older articles on my feelings about Autism Speaks, read

 

  1. Hi Gina! Well, my nephew has autism, and my SIL is on FB putting up the “light it up” logo. My daughter is a special ed teacher, and she also put up a photo of her in a tee shirt with the same phrase.

    Autism has touched my family on both sides, and I understand your sadness and frustration. (My nephew is going to graduate from high school this year, and the real crunch is on to find a program to keep helping stay engaged and make progress.) No one likes to see their struggles reduced to a catchphrase.

    I’m glad that you see some good things happening. What is causing the great increase in this? I hope some day we find out, and that it’s curable. In the meantime, I continue to pray for all who are affected and their families…including you.
    Ceil recently posted…Piecing It TogetherMy Profile

    • I did it in the beginning too. It’s really big in my area. But once I got wiser, I started researching any charity I gave to. What I read on them was upsetting. Barely any resources for parents, and in a few short years, they became a wealthy company. There are MUCH better places to give to!

      This is true. Zoe is going into 5th and her school just took a big downward slide, esp for kids with special needs/IEPs, so I’m not certain what to do about keeping her there. I wish your nephew the best of luck! There are more programs (because they’re needed, sadly) so I truly hope he finds one that fits.

      Well, I’m happier when I’m optimistic than when I’m a pessimist so I try to see the best. I know some people who have kids that are fully recovered, but right now, it seems elusive for my kids. Another day, another try at something else! Never give up, never surrender is my motto 🙂 Thanks for sharing and your prayers are GREATLY appreciated!! Blessings to you, I’ll pray for your sister & nephew too.