I was at a physical therapy clinic with one of the kids last week. While my daughter was getting settled in with her exercises, I scanned the room and saw a handful of staff and patients. Everyone was engaged in whatever activity or job they were assigned to do. Even as busy as they were, there were several conversations going on. With how open the room was, I couldn’t help but hear bits and pieces of the chatter going on. No one seemed to mind which is why one of the PTs had us all laughing when she wisely and loudly told the young twentysomething male PT assistant, “Just you wait! When you hit 40, it’s all downhill from there. Mark my words… enjoy yourself – and your body - now while you can.” A few of us fortysomethings nodded our heads in agreement. Then the entire room erupted in laughter, including the other PT assistants who enjoyed the ribbing their co-worker had gotten.
Life after 40. You’ve probably heard the jokes:
Forty is when your body…
Gives your brain a list of things it’s not going to do anymore!
It’s a cruel irony that when you get to be two times the age of a 20-year-old…
You only have half the metabolism!
40 is when you finally get your head together…
And your body has other ideas.
After you turn 40…
Every time you suck in your gut, your ankles swell!
It’s all fun and games turning 40, unless you’re talking the autism numbers…
1 in 40.
It’s just an estimate we’re being told, but what a stat! What a stark difference in reactions about it from those who won’t sound the alarm compared to those who’ve lived through life with autism, too. Here are two examples, the first one from a major media news outlet and the second from an autism sibling.
“How many American children have autism? The U.S. government answers that question at least three different ways and says the latest estimate — 1 in 40 kids — doesn't necessarily mean the numbers are rising.”
I couldn’t get through the first paragraph. Numbers aren’t rising? Really??
The day that that was announced, my oldest daughter came home from school asking me if I’d heard the news. Before I gave her my thoughts, I asked her what she thought.
“Mom, we talked about in one of my classes. The teacher mentioned it. I didn’t say anything, but immediately, my friend turned around and said, ‘Fin, what do you think is causing this?’ I didn’t really say much this time, because I have a good idea of why the rate keeps rising, but…some of the kids in my class…they won’t hear it. They’re not affected by autism or by vaccines like we were, so I didn’t say much except that something’s got to give. So many kids are affected already, and it could get worse before it gets better.”
I completely respected that she knew that her thoughts would likely fall on deaf ears and was incredibly proud of my teenager for understanding what the new numbers mean. Both of us shook our heads as we continued to talk about the rate and potential reasons for the increase while looking at news sites. We shouldn’t have jumped online. The lack of concern overwhelmed both of us, so we took a break. Later, I decided to reread some of the articles that had surfaced this week about that survey. I was happy to see that parents had something else to add.
One thing I appreciated the more I read is that the study itself included not just the parents’ responses – that autism is obviously on the rise, but that other issues associated with the diagnosis are being reported by parents:
What’s Known On This Subject:
Previous studies over the last 20 years have shown an increasing prevalence of autism spectrum disorder (ASD) among US children. Moreover, families of children with ASD have reported greater health care needs and challenges compared with children with other emotional or behavioral conditions.
That’s what my daughter sees, and that’s what a lot of us parents have seen and have been sharing for years. The parents know. The siblings know. The teachers in the overcrowded classrooms know. The therapists with waitlists also know. The neighbors watching the kid stimming at the park know. They all know that autism isn’t just autism any more. The diagnosis can be much more than just a communication disorder in which kids think differently. It can bring seizures, other neurological problems, gastrointestinal issues, and sleep complications. So many people know that autism is medical and that it’s become a multi-complex diagnosis except the mainstream medical and research communities. Even with as much parental input as they’ve been given over the last 2 decades, somehow they continue to be baffled by it.
The autism rate has skyrocketed. No one can deny that. In the United States, it went from 1 in 10,000 during the 1980s to 1 in 59 as announced in April 2018 by the CDC. Based on parents’ responses in the most recent survey published this week, the officials were a smidge off. According to parents, that rate isn’t quite right. We’ve now hit 40. If the impact of autism gets worse after 1 in 40 like our bodies tend to after hitting 40, I am officially afraid for the future.
Bulging at the seams, not enough support, unbalanced, and worn thin – that could describe an aging body. It could also describe schools and therapy centers that are seeing an increase in their special needs student populations. It absolutely describes some families and their bank accounts as they try to navigate and afford the constant care their child with autism requires. When paid attention to or caught early, body aches and pains can be identified and treated though. Autism can be also. But you won’t hear that from the news. Just like how the rate is too hard to believe for some, so is that fact that it can be reversed and even prevented.
Autism is no joke. It never has been. To ignore its rise and the incredible impact it has had on families and the community serves no one. Parents have felt the aches and pains of the rising autism rate for decades. Will the officials in charge of counting it finally feel it? I suggest they do, but I won’t hold my breath waiting for that to happen.
Cathy Jameson is a Contributing Editor for Age of Autism.