My day started early Thursday morning. Up and out the door and on the go from before 7am to almost 2pm, I finally had time to sit down mid-afternoon. After reheating some leftovers for a late lunch, I opened the usual websites - my email, AofA, and Facebook. Within minutes of sitting down, I started getting emails. Have you seen the new numbers?? New numbers? The autism numbers! Oh, that's right. Usually published in early April, I, like many other parents, had been waiting for them to be shared. Go look, but be prepared. It’s not good. Scared to find out, I jumped over to a few news sites. There they were. Considered breaking news, the new autism rate had been announced that morning: 1 in 59.
Image: Talk About Curing Autism
Those numbers – they really don’t add up. I know that. Other parents like me know that. But the general public doesn’t. Unless they go looking for the information themselves, they won’t know how tragic it was for me to hear that newly published rate. Too tired and sad to do anything fruitful, I looked for other stories to read. Closing the news websites down, I kept the internet open for a few more minutes. Having less than an hour before I had to leave the house again, I made sure to read stories that were completely unrelated to autism.
When I picked up my younger kids from school later that afternoon, they asked how Ronan’s day was. They were happy to hear that he had a really good day. Next, they asked me how my day was. I told them it was going pretty well until I read the news. Curious about what story changed my attitude, I said, “Well, the new numbers came out today.” Knowing which numbers I was referring too, Ronan’s younger brother said, “And??”
“1 in 59.”
His eyes widened, “Wow. That’s a lot.”
“It sure is,” I said, “But it’s even higher.”
Confused, Willem asked, “What do you mean?”
“Remember that the CDC uses data from years ago. For some reason, they can’t, or won’t, count all the kids who have autism today. Younger kids are not included in the stats, so it’s got to be more than what was just reported,” I explained.
Curious, he asked, “Why won’t they count everyone?”
I told him, “Good question. I have some theories – they’re afraid to, they’re told not to, they’re too lazy to…”
He interrupted, “Can you imagine if people really knew how many kids really had autism??”
Smiling at how quickly he understood, I said, “Bingo. I cannot even wrap my head around it. People at the CDC are called the experts and should know everything about diseases and disorders that affect kids in the US. They claim they are in charge of prevention, too. (The full name is Center for Disease Control and Prevention.) But even they are left scratching their heads wondering why the incredible increase in autism cases over the years.”
Willem matter-of-factly added, “Well, we know what causes autism.”
Glancing back at his brother, I said, “Yep. We do,” and then added, “And you know what, Willem?”
“What, mom?” he asked.
“You know a heck of a lot more than some adults do,” I said proudly.
He said, “That’s good…but that’s kinda sad too, you know.”
“I know,” I told him. “It’s actually a little pathetic. Not about you knowing more – that’s going to help as you and brother get older. But the other people? It’s ridiculous how they’ve mislead the public about the rise in autism and what we know to be a cause of it.”
Looking back at his sisters, he said, “Yeah, they’d rather we celebrate it than make it stop.”
“Yep. That’s called turning a blind eye,” I said, “and I have a feeling that’ll continue to happen.”
Image: USA Today
Willem’s an insider looking out at what the world refuses to see—that vaccines can result in autism and that autism is here to stay. Since he knows that and since he sees the real-live struggle his brother lives through daily because of autism, he has every right to feel as frustrated as I do.
My 13 year-old has more of a clue than our paid government ‘experts’ do. If they ever fully understood just how much of a crisis autism is, I’d hope that the public would begin to pitch in a little bit more than know to do now. I really can’t expect them to do too much yet. That’s because those who could and should be guiding us about the autism epidemic are spoon-feeding the public only bits and pieces of what they feel is important. I know that some people in the autism field prefer not to use that word crisis as a description of the disorder, but when you think of how many children are diagnosed with it, and when you realize how costly autism is, and also factor in how paralyzing it can be to families, it is a crisis. It’s abysmal and has been allowed to be normalized.
Had groups, like the CDC, used their influence to curb its prevalence instead of ignore it, maybe we wouldn’t be here with 1 in 59 with autism. But, here we are in 2018 with 1 in 59 and rising.
In keeping vocal about some of the negatives that autism can bring – seizures, loss of speech, loss of typical development, and loss of the chance to be independent – I don't fight just for my child. I fight for other children and for their families, too. It isn’t easy to fight for someone else, but with grace and more hope than I think our government agencies will ever offer autism families, I will continue to do that. It can be emotionally draining, but I do it so that no other child has to experience a childhood like my son has had to. I do it so that the siblings can be relieved of the trauma that’s been brought to their lives, too.
With the help of an army of parents, many of them members of autism support groups, I’ve been able to keep going forward. Run by parents, and often funded by friends and families, you won’t see the kind of dedication these groups offer from our government or its agencies. Why would you when what’s happened to our children means nothing to those agencies? If in the future you find yourself needing support for a disorder that hasn’t been given the attention it should, do check out the groups* who do recognize that people need real help right now. They get it. They got the connection a long time ago. Over the years as the rate keep climbed higher and higher, they never backed down from helping families. They want to help. So, find them. Lean on them. Use their resources. They’ll help. Autism is heartbreaking, but with the right people by your side, you don’t have to go it alone.
Cathy Jameson is a Contributing Editor for Age of Autism.