I’ve been an autism advocate and activist for 10 years. By the mainstream media’s account, I’m on the wrong side of history. You see I’m one of “those” parents. One of “those” who brought a perfectly healthy baby girl into this world only to watch her descend into a physical hell of repeated and chronic illness followed by developmental delays that eventually resulted in an autism diagnosis.
I’m one of “those” parents who did the relentless research and put the pieces together and had the medical testing done that proved her autism wasn’t even kind of sort of genetic. It is epigenetic, a fancy word for environmentally caused. And it is iatrogenic, another fancy word for medically caused.
Here’s all you really need to know about the controversy. The medical industrial complex says my husband and I caused her autism. We know they did. And because they have just a teensy bit more power, influence, money and control over the messaging than I do from my keyboard, well, it’s fair to say they are winning. Jerry Seinfeld is proof.
It’s not uncommon to feel punched in the gut when you are a parent like me, pretty much on a daily basis. Actually, sometimes on an hourly basis. No one, as far as I can tell, is bullied nearly as much as a parent of a medically injured child.
According to 99% of what gets reported, we’re dangerous “cranks” (whatever that stupid word means that nobody ever uses except one guy) who must be stopped before the world explodes in infectious disease because of us. We’re reckless, irresponsible, flat-earth-conspiracy-theorists who can’t accept that we have:
A) Bad Genes
B) Bad parenting skills
C) Bad kids
D) Bad thinking and reasoning skills
E) Bad souls
And this is basically what gets reported or blogged about on an average Tuesday.
Going after Jenny McCarthy, who had the guts to be the spokesperson for thousands of parents like me, has become a sport. Slandering her, taking her words out of context, and calling her a liar is simply accepted as good journalism these days. Someone just managed to even make a book out of it. Gross.
There are Facebook sites that exist solely for the purpose of internet trolls who make up fake profiles and friend parents of injured children only to then take screen shots and pictures of their children, then share them on their wall and make fun of them. Facebook allows it.
There are the incessant articles from outlets around the globe that just get it wrong. Every. Single. Day. Like the one last week, where a pediatrician seriously had the gall to say ethyl mercury is “natural mercury” that is totally safe. I could write a thesis about why that statement is so wrong and so dangerous on so many levels, and yet, not a single person responsible for that reporting even checked if that was kind of true.
And lest we forget about the tragedies of autism that saturate my newsfeed on a daily basis. The epidemic of missing and abused children. The parents who lose their minds and toss their kids off bridges. My friends whose children are seizing so often and so badly that they are afraid their children will die. The friend whose child just did die.
In my own life, autism has changed everything about who I am. Everything. The life I knew a little over ten years ago has ceased to exist. Friendships have changed. Priorities have changed. My perspective on the world and the people I thought I could trust have changed. It’s hard to put into words the 180-degree turn it made me take.
And it’s equally hard to put into words the pain, grief, trauma, fear, anxiety, worry, and heartbreak it brought. Watching your child slip away from you, and not be able to express to you where it hurts or why is an experience no parent should ever, ever have to endure.
Watching it happen and having a medical community that is not only completely ignorant about what to do to help, but also responsible for it happening in the first place, and then arrogant enough to not take responsibility but actually put it on you? That’s…well, that’s a special kind of hell. I don’t even know what that is. Other than it is the reality for thousands upon thousands upon thousands of parents right now as I type this.
And that is why I continue to speak out, seek justice, and won’t back down from the truth. To borrow from my friend Eric Gladen, “The public needs to see what’s happened here, because the public will be the ones to drive change.” I spend a good portion of my life trying to make that happen.
So it came kind of as a shock at first the gut wrenching, visceral response I had to Jerry Seinfeld’s speculation that he is on the autism spectrum. I rarely, if ever, swear on my social media sites or in writing. I let an “F” bomb fly in the first sentence.
I was insulted and angry in a way that I haven’t been in a long time. When you are bullied on a daily basis, you build up a tolerance to the non-sense and hatred because you have to. You learn to let it roll off you to the greatest extent possible, and within a few years, most of it does…even though it still leaves you a little breathless every time.
But this? This was different. I was angry.
Jerry Seinfeld? JERRY SEINFELD HAS AUTISM?! Are you kidding me?!
Everything about that idea ripped through me like a knife. It lacerated me. It undermined everything that my child and our family suffered and lost and experienced and made it into a joke, no pun intended.
JERRY SEINFELD HAS AUTISM?!
I thought about the little boy who had just been tossed off the bridge by his mother. I thought about Alex, who had been stabbed to death by his. I thought about the little boy who just died from having a seizure in the bathtub and drowning.
I thought about Avonte, who wandered from school, unable to ask for help or know where he was going, and ended up dead. I thought about the boy whom had feces dumped on him in an ice bucket challenge turned evil.
I thought about sitting in the doctor’s office being told I should “pay more attention” to my child and that “sometimes when we’re disappointed in our children they manifest that disappointment as a delay”.
I thought about the IEP meeting I have coming up, the one where we will transition to high school, and all of the pain that will entail, as we have to discuss alternatives to the college experience that we dreamed she would have.
I thought about my friends and their children, many of who have NEVER EVEN HEARD THEIR CHILD’S VOICE…and their child is 20.
I thought about the students I had in the last 10 years of my 20 year career who had high functioning autism, and that even though they were amazing, and wonderful, and kind, and smart, struggled so much just to even be able to sit in class some days. A pencil tapping, a buzzing fluorescent light bulb, the sensation of their sleeve while they tried to write…all of it making them anxious and overwhelmed…and the serious help these VERY independent young people still needed.
JERRY SEINFELD HAS AUTISM?!
I grew outraged. I was offended on a level I hadn’t experienced. It made a mockery out of these children and their lives. And worse, it caused so much harm. It played right into the mainstream non-sense that autism has always been around, it’s always been at the current levels, that it’s a gift, that it’s nothing to worry about, and it’s a fun quirky disorder that makes you a genius.
Now, apparently, it makes you a comic genius too. The disorder that’s rooted in the inability to read social cues, nuance, and relate to others on an emotional level apparently has exceptions. For arguably the most brilliant man ever to do just that somehow had autism at the exact same time. Remarkable.
My heart continued to beat out of my chest as the day went on. Not only was he saying that he was very broadly on the spectrum, in his own retrospective self-diagnostic way, but the media wasn’t challenging him! They loved it!
Not one person said, “Hey, um, Jerry…I get what you’re saying about feeling socially awkward, but autism has very specific criteria that has to be met. Do you think it’s irresponsible to self-diagnose like this?”
Nope. They didn’t care. Another feel-good-autism story for the books. Nothing to see here, folks. Move along. Autism is great. See!
JERRY SEINFELD HAS AUTISM!
And it got worse. Within a day stories were saying we autism advocates were thrilled. Autism Speaks posted it on their Facebook page. Other self-advocates were virtually high-fiving.
Thrilled? I thought astounded. Are you kidding me? What planet are we on?!
Does nobody get what just happened? Seinfeld just did for autism what Einstein did. He quite possibly just set it back decades. DECADES! I couldn’t count the amount of people, myself included, who were told the stupid, ridiculous story about Einstein not talking until he was 4. Do people have any idea how harmful that story is? Delaying a child getting help until they are 4 because of a story that one man supposedly didn’t talk until then? ARRGGHHH!!
And now it will be Seinfeld parents hear about.
“Oh, I heard Jerry Seinfeld has that! Oh, lucky you! Maybe he’ll be hilarious!”
“Why would that mother toss her kid off that bridge? Isn’t autism what Seinfeld has? He’s so funny that guy!”
“Well, of course they get lost, these kids. Remember when Seinfeld lost his car in the parking garage?”
“Oh, isn’t that the thing Seinfeld had? Look at how successful he was! You should consider yourself blessed!”
Ah, yes, it’s such a blessing. Such a blessing that parents are having psychotic breaks and killing their kids. Such a blessing to watch a child in diapers bang his head against the wall. Such a blessing to not have any resources for your child after they age out of the school system because those resources don’t exist.
Yes, such a blessing this autism. One big, hilarious, genius blessing.
I beg of anyone reading this right now to hear me loud and clear.
JERRY SEINFELD DOES NOT HAVE AUTISM.
Being socially awkward, taking things literally, and having a hard time with nuance makes you no more autistic than grabbing an automatic weapon and opening fire on a school. In every possible way that society could screw up what the real experience of autism is like, it manages to do so. It takes a character like Sheldon on the Big Bang Theory and makes him the poster child for the disorder, even though that kind of autism is the kind that at best 20% of kids actually have, even less of whom has that kind of intelligence.
It refuses to take to task the very industrial complex accused of causing the problem and instead, eats up their propaganda without an ounce of suspicion. It uses a man who has never treated a single child with autism as the world’s expert on it, the same man who made millions off of the very product parents claim caused their child’s condition, and it doesn’t think twice about how stupid that is.
On every level that our media could abandon our children, it has managed to do so. It has done such a good job at distorting the disorder and the epidemic, that it has now convinced celebrities and others that it is perfectly acceptable to self-diagnose and speculate publicly that they have a condition they don’t even kind of have. And it applauds them for it.
I like Jerry Seinfeld. Who doesn’t? I have watched the re-runs of his sitcom for years and still do. I loved that he was one of the few comedians who didn’t resort to swearing and off-color humor as a way to tell jokes. He just found the hilarity in life itself.
And that my friends, it what is making this such a very hard pill to swallow. Finding the hilarity in life is exactly what autism takes away from an affected person, and for a long time, from the affected families.
Please Jerry, I beg you. Clarify your statement. Hold the media accountable. Tell the world you were taken way out of context. For if you don’t, I’m afraid there will be absolutely nothing funny, or good, about what you just did. In fact, for my child and our family, it’s down right hurtful.
Julie Obradovic is Contributing Editor for Age of Autism.