April is Autism Awareness Month. Autism Speaks has a huge campaign called “Light it Up Blue” in which they encourage everyone to wear blue and cast blue lights on front porches, buildings, and monuments. They say it’s to raise awareness. In reality, it’s to raise money. But more on that later.
Every month with autism is difficult but April, and this campaign in particular, makes it that much more difficult. You see, when I think of the color blue in relation to autism, here’s where my mind and heart go.
BLUE: The color my baby was when he was born. It was the first time in his life, conventional medicine failed him. It wouldn’t be the last. The umbilical cord was in a true knot. But because we had to wait on the doctor to arrive so I could push (and he could get paid), Sam was deprived of oxygen for far too long. And because the internal monitor that was supposed to be attached to the baby was actually attached to me, the monitors didn’t alert that there was an issue. After he was born, he did not receive any intervention, and at my insistence, they tried to gloss the crisis over with “He’ll pink up, mama.”. On day one, my compromised little boy received his first injection of Hepatitis B to protect him from sharing needles or having unprotected sex in the hospital nursery. His APGAR scores were falsified and his medical records were mysteriously missing when we requested them. So when I think about blue and autism, I see my beautiful baby boy who was the victim of medical malpractice I will never be able to prove.
BLUE: The campaigns in April that profit off of our kids in the name of awareness. Do you know how many kids could be recovered or at least their quality of life greatly improved with the millions that Autism Speaks pays their CEO, alone? Yet, families just like mine are encouraged to wear blue, put a blue light bulb on their front porch, and raise funds to….what….make more people aware that autism is an epidemic and Speaks is profiting off it? How about putting some of your greed toward treatments that actually work? Educating people about cleaning up our food supply, our homes, our environment for prevention? How about kicking Monsanto to the curb for poisoning our food supply and in turn, poisoning us? And don’t even get me started on those cookies Panera Bread is promoting that have the cute little blue Autism Speaks puzzle piece on them. FoodFacts.com gives them an “F”. Not only are they full of gluten and casein which act as morphine in our kid’s brains, but contain genetically-modified wheat, corn, artificial colors and flavors, and are high in sugar and saturated fat. They are poison. But if you buy your cute little cookies and put your blue light bulb on your porch, somehow you’re supposedly helping. Beware of false prophets taking home big profits.
BLUE: The feeling that 500,000 parents have when they realize that not only do services stop when the bus stops coming, but there is no plan for their children as they age out of the school system. 80% of adults with autism now live with their parents with no meaningful work or socialization in their lives. Another half a million kids are aging out of the school system within the next 10 years and the government is hard at work to limit the range of choices for community living even further. Ignoring this population isn’t making the problem go away. In fact, it’s growing. An MIT researcher recently stated that by 2025 (10 years) 1 in 2 will have an autism diagnosis. 50% of our population will have an autism spectrum disorder. Stop and think about that for a minute. While some will go on to live independently and be able to hold down a job and navigate the world, the majority will not. Where will they live, work, socialize? Mahatma Gandhi is credited with saying, “A nation’s greatness is measured by how it treats its weakest members.”. So far, we are failing miserably.
So no. I will not be “Lighting it Up Blue”. Every day is Autism Awareness Day in our home thanks to greed and indifference. And I’d rather spend my time and money trying to improve the health of my child, the children we treat at our autism center, and create a place where my child can thrive as an adult. Wouldn’t it be lovely if Autism Speaks, Panera Bread, Monsanto, and other corporations would join me? Well, I can tell you, they won’t. But you can. You can vote with your dollars. You can invest in organizations that are actually helping families living with autism. You can purchase non-GMO products. You can create awareness campaigns that don’t line the pockets of multi-millionaires. Something has to change and we have the power to make that change. Know where your money is going. Look at who’s backing the politicians you support. How did they vote in the past? Stand against Monsanto and companies who are destroying our food supply, our planet, our children, and our future. Feel like you’re too small to make a difference? You’re not. Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has. – Margaret Mead.
Nancy Bernotaitis, Author, 4.22.15