Normally, I’m a calm person that tries not to let many things get to me. Everything I read is usually with a grain of salt, that is until a parent/advocate for parents on the spectrum decides to write the type of garbage that involves the reinforcement of debunked myths and even goes as far as comparing Autism to public health emergency no less deadly and devastating than Ebola but we’ll get to that one shortly. Last night I read the type of article that makes every single one of my braincells want to take a loaded gun to their heads. Now before I can go any further, y’all have some assigned reading to to? I already know what you’re asking, “Assigned reading? The hell is this high school?” No but in order for you to feel and understand the rage in these next few paragraphs implore all of you to kill some braincells with the smut I’m about to post at the bottom of this paragraph. Don’t worry though, I’ll once again be waiting right here as awkwardly as Dora The Explorer while she awaits your answer.
WARNING!!! BRAINCELL KILLING SMUT AHEAD!!!!!
I bet you’re just as mad as I was yesterday when I had to subject myself to this crap. I bet you just want to channel your inner Steve Wilkos and throw chairs because UGH, I DON’T LIKE YOU!!!!!!! For those who were too lazy to read this educational piece (blatant sarcasm) and want a tl;dr (Too Long; Didn’t Read) summary, this lady (I’d love to call her two words that begin a B and a C but I’m to classy to bring myself to such a thing, even though she’s well deserving of every derogatory thing you could call a woman) goes on a charged rant about Jerry Seinfeld’s recent Autism diagnosis and how celebrities on the spectrum distract people from the other end of the spectrum where all the doom and gloom (out of control children, parents killing their children, sleepless nights) lie. Now before I throw this lady under the bus she does raise two good points and unfortunately the two she has going for her.
1. Autism is a Spectrum where everyone is different and no one person is the same. While Seinfeld is a very likable person and should be applauded for his advocacy, it is important to remember that he isn’t the face of Autism and nor should he ever be. He and others on the spectrum however can be a reminder that anyone on the spectrum can thrive given the right supports, not to say that your child can reach celebrity status but given some serious patience they can become the best possible version of themselves.
2. Caring for anyone on the spectrum at a young age can be extremely expensive and while some parents have access to a plethora of early intervention resources, there are a number of those that don’t due to insurance technicalities.
Now while these are very good points they are unfortunately pushed on to readers via the “Autism Speaks” style fear agenda that hasn’t worked in the past and sure as hell won’t work now. Through out this article, Marie Myung-Ok Lee uses some choice words to remind people that Autism isn’t some glamorous thing that’s hip and while she’s right about that too she decided it would be fun to drive that point home through some extremely offensive scare tactics. From here on out I will choose a few quotes from this rant and do a Flemmings style break down of why a decent amount of the shit she spews is incorrect and down right offensive.
“What I fear is that these public faces of autism will allow society, and more important, policymakers, mentally off the hook. You can have autism and get a Ph.D.! It helps you write jokes! Your charming quirks and aggravating behaviors are now explainable.”
This line is followed by this lovely little line,
“To veer to the other end of the spectrum, the sporadic — but steady — news of overwhelmed parents killing their own children warns of a crisis building in our own homes. Many of these cases have been mothers, but before we explain it away, as it has been, with gendered suggestions of mental illness, attention seeking, etc., let’s also remember this story about a father — and high-ranking former Bush official — who shot his autistic 12-year-old son in a murder-suicide inside their suburban McLean home”.
I’m not gonna sit here and tell you that it’s easy to raise a child on the spectrum because it is not, far from it. You know what isn’t any easier? Growing up on the spectrum. You what else isn’t any easier? Being bullied and hated by a lot of people simply because you don’t fit society’s idea or normal. A huge chunk of the problem with the parents who try to get congress to pass bills that will allow these services to get funded by the government is they spend so much time venting about their struggles that they forget that us autistics struggle too, probably even more than you. You parents make it all about yourselves and when you tell all of these stories of doom and gloom, the only vibe people get is that this sort of funding will make being a parent of a child on the spectrum easier. You hope these therapies will crack some code but truthfully us Autistics already cracked the code, you just need the patience to understand (read “There is No Spoon, Then You’ll See That it is Not The Spoon That Bends, It is Only Yourself”). Yes, the doom an gloom stories of parents that struggle to raise children on the spectrum and those who unfortunately take the lives of their autistic children unfortunately exist but just like Seinfeld, they’re not the face of Autism. Autism is all of those experiences thus the reference to a “spectrum” and until you can learn to tell our stories the right way without making it only about yourselves, no one will ever take you seriously. Stop reminding people that Autism is hard, people already know that, what they want to know is what their tax payer dollars will do to make it better. The lack of funding has nothing to do with the fact that there are famous and successful people on the spectrum, Autism research lacks funding because you can’t make an adequate case as to why you deserve it.
“Autism as a disorder was only discovered in the 1940s, but remained so rare (the rate of 1 in 10,000 staying steady for decades) that most baby boomers and Generation Xers likely never even heard of “autism” during childhood. Well into the 1980s, the appearance of an autistic patient would be considered such a rare event in the hospital, medical students would be excitedly summoned to observe.”
“Most urgent, what’s being ignored is the likelihood of environmental influences (likely multifactorial) fueling this rise in these numbers. A study at Stanford, the largest of its kind, followed twins where one of the pair is affected by autism and found that genes accounted for only 38 percent of the autism risk, with 62 percent from non-genetic factors — suggesting that “the role of environmental factors has been underestimated.”
“Since World War II, we use exponentially more chemicals; environmental regulations, such as the Clean Air and Water Act have been gutted; drugs like SSRIs and antibiotics are not only in heavy use, they are now ubiquitous in our food and our water. A study at Columbia University’s Mailman School of Public Health has found that burning fossil fuels releases toxins like polycyclic aromatic hydrocarbons, which have been shown to be associated with developmental delays.”
If there’s one thing that I shouldn’t have to keep stressing it’s that Autism isn’t on the rise at all. The percentage of people who have Autism has been the same since the dawn of time. People are so desperate to fuel this fear agenda that they will look for anything and twist those facts to purport their own agenda. What people fail to understand is that what we know about Autism now is very different than what we knew about it 70 years ago. The rate of diagnosis-es is what’s been on the rise and that’s because years of research has allowed doctors to understand Autism as a spectrum in the first place. People also fail to understand that because this spectrum exists, doctors are able to give proper diagnosis-es to those who 70 years ago we would have simply considered crazy or “mentally retarded” for lack of better words within that context. Also, can we stop blaming Autism on outside influences? Anything pertaining to vaccines, chemicals, and gluten are always going to be debunked, ALWAYS! I just had some Vietnamese food earlier in the day which I’m pretty sure had a ton of gluten in it. I didn’t feel anymore Autistic than I did a few hours ago. I used some cleaning chemicals to clean my windows some time ago and I don’t feel anymore Autistic than I did prior. Just took a whiff of that Boston air which probably consists of some of those pollutants that you’re raving about, I still don’t feel anymore Autistic than I did prior. I didn’t get to where I am by eliminating any of these from my life, I got here by working around my deficits in order to become the best possible version of myself and your child can too, if you’re patient enough to endure a very lengthy trial an error process.
“Being a parent of a child with severe autism in no way diminishes my respect and admiration for Jerry Seinfeld and others striving for autism acceptance. What I am proposing is separating the high-functioning end of the spectrum — perhaps calling it something else — so that we can focus on the urgent and looming issue at hand.”
Again, Autism isn’t a kid throwing tantrums, screaming, being destructive, and reeking havoc but it also isn’t just Jerry Seinfeld, Temple Grandin, and other high functioning adults. Autism is a spectrum and to separate the higher functioning people into their own category and call us something else isn’t what Autism is about. Everyone no matter what part of the spectrum brings their own special gifts to they table and are all capable of once again becoming the best version of themselves given you allow them and yourselves the space to make mistakes. Just because you view your day to day as doom and gloom in no way means that you can belittle the higher end or any part of the spectrum just to make it about yourself and the rest of the parents that agree with your ignorance. This line is a slap in the face to all of us Autistics who struggle greatly to get to were we are. Again, Autism a spectrum of disorders and stories that paint an even bigger picture, one of acceptance and tolerance. You have no place to pick and choose which stories get represented for they sake of painting what ever scenario you want to push on people.
It’s only a matter of time before another child is killed, and we won’t even remember their names. We need to call autism what it is: a public health emergency, no less deadly and devastating than Ebola.
And beyond the public health issue, at these numbers — I have to repeat: 1 in 68 — where are we as a society if we continue to ignore the cancer-like growth of incidences of a disorder that was virtually unheard of just a generation ago? If it turns out environmental factors are at play — factors that we steadfastly ignored because we glossed it over by saying, “How bad could autism be? Jerry Seinfeld has it”
The first paragraph in this final quote made me livid and if it doesn’t make you as mad as I was then you may want to do some soul searching. Autism is NOT a public health emergency. You have no right to compare Autism to something as devastating as Ebola you ignorant [Insert classless word here]! Autism isn’t an epidemic, bad parenting is. Oh there’s an epidemic alright and that’s the rise of parents who lack patience. I didn’t get to where I am because my mother got fed up and decided to wage war against the higher end of the spectrum and push an agenda of her own. I got here because she devoted her energy and frustrations to getting me the best possible resources within our financial means and let me tell you, those means for a Haitian immigrant are kind of slim. Was growing up with Autism tough? You bet your ass it was, was it tough for my mother to raise me? Of course it was but at no point was it as debilitating as having ebola nor does Autism spread like it. Cancerous like growth?! Really? These words are incredibly disgusting and you should be ashamed of yourself. I get it (even though you’re the type of person who believes I’m not capable of such a thing), you don’t want those who thrive on the spectrum to take away from those who struggle but this isn’t the right way to do it. You should be grateful that someone with as much star power as Jerry Seinfeld is on the spectrum. While he can never tell your child’s story, he and other celebrities have the star power needed to pull the strings that may get you the funding you and several others desperately need. We can’t make a case to congress if we don’t work together. Your story is just as important as mine and all of the others in the community whether you’re on the spectrum or a care taker for someone on the spectrum. Fear isn’t going to direct those tax payer dollars to our aid any faster. Life is tough but this type of writing is offensive, It’s a bunch of baseless and ignorant facts and opinions woven together to discriminate against one part of the spectrum simply because you feel it’s a threat to your child’s end of the spectrum. The other major reason you should be happy that there are powerful people on the spectrum is because while we don’t want the world to believe that anyone with Autism can be famous, we don’t want them to believe that Autism is all doom, gloom, ans struggle either. Autism needs to be celebrated as a spectrum of disorders, stories, and difference that make each of us special in our own unique ways. Well I’ve ranted all I can rant I shall return soon with another masterpiece when I feel like writing something again. Stay classy people.
I’ve been volunteering with kids/young adults with developmental disabilities, and now have a deep and profound respect for their advocates! God bless you.
And I thought you’d appreciate this: http://karenwriteshere.com/2014/11/09/special-needs-kids-can-teach-us-a-thing-or-two-about-humanity/