Those of you that have followed my blog from the get-go know a bit about me and my life. My level of share increases with my passion for a subject. I cannot seem to find the words to convey how passionate I am about providing people with accurate information for families in need of knowledge and support. I suppose an interpretive dance would suffice, but again…..what song? Oooh, I got it now! It would be “Imagine,” by John Lennon and I’d be wearing a Stevie Nicks type of floaty dress and I’d be leaping around with rainbow ribbons in a lush meadow surrounded by cute bunny rabbits, fluffy kittens and clumsy puppies. It would be bizarre and possibly uncomfortable, I can’t be sure. One thing I do know is that when it comes to the FACTS, I get VERY emotional.
Over the years I have been lucky enough to have access to a high quality education and guidance from brilliant mentors. That combined with my general lust for knowledge and good goddamn comprehension has provided me with enough evidence to confidently be terrified about the state of the world today when it comes to how we irresponsibly share CRAP information because it supports our FEELINGS.
Personally I respect a strong opinion, especially when it’s laced with reliable FACTS. This brings me to the point of this rant. This is a rant, not a blog post. I am ranting. If you will, imagine a middle aged woman with a crazy look in her eyes, pulling at her heavily highlighted (yet badly in need of a touch up) hair who is making growling noises and intermittently banging her head against the wall as she reads countless sources of invalid, unreliable, and emotionally based pieces on something she knows quite a bit about but of course not everything: AUTISM.
That wild woman is me. My passion started with emotion when my daughter was diagnosed with an autism spectrum disorder. You’re GODDAMN RIGHT I WAS EMOTIONAL! I won’t even attempt to go into detail describing the experience right now because getting emotional about it isn’t the purpose of this rant. The purpose of this rant is to BEG and plead with you to stop the madness! Knowing the truth, the facts about AUTISM isn't just a professional thing for me. It's personal! My feelings about this are strong, but they don't change the facts.
Please stop relying on your feelings to provide you with information that is best obtained through the gathering of FACTS. Now I suppose one could argue that reality is subjective. Getting philosophical only further complicates things. As my friend Karen, a fellow writer would say, “Hey you, being all argumentative and further demonstrating your ignorance and poor interpersonal skills: STOP DOING THAT!”
I beg of you to STOP DOING THAT! I have had many a moment of overwhelming disappointment and frustration when a professional that I trust to educate and guide me says, “I don’t know.” What? If they don’t know, then who does know? The fact (notice that word – fact) is that sometimes there are no answers. I will repeat for those who, like me, learn better when things are repeated – SOMETIMES THERE ARE NO ANSWERS. That’s right, sometimes there are no answers and that’s okay, but sometimes there are answers and we might not like them very much. We might hate them because of the way they make us FEEL.
A certain news network claims to be “Fair and balanced.” As my 11 year old son would say, WHATEVS – with an eye roll. Whatevs is right. It is my opinion that it is more than a lot difficult these days to find any source of information in the general media that is fair and balanced. My evidence of this is based on a personal habit of reading every stinking thing I can get my hands and finding what I consider to be a mind boggling dichotomy. So much of what is offered up to us is meant to provoke us to feel and to take a side based on emotions. How does this help us to find the answers we need to be better and understand things that we are still trying to find the answers about such as AUTISM? Is the mainstream media the place to find these answers? How about listening to celebrities? Actors?
What happened to good old fashioned science and good solid research based evidence and information provided by medical professionals that don’t get emotional about the FACTS? It’s there, but science doesn’t speak to the heart. It speaks to the mind, the place where reality lives. Where facts and logic and evidence thrive!
Feelings are wonderful and important and I can’t stress enough how much I rely on my own gut instinct and emotions to guide me in certain aspects of my life. I am not saying that how we feel isn’t important. I AM saying that how we feel can put us and others in real danger, preventing us from making right and safe choices for ourselves and the people we love.
So I say, STOP DOING THAT! Stop replacing information with emotion. Stop demanding an answer that makes you feel better because the unknowns make you uncomfortable, especially when it comes to AUTISM. STOP making an incredibly complex issue simple! If you want and need to feel, to understand, I have some resources that are chock full of subjective perspectives of people who are living every day with AUTISM. I post that shit all the time on my Facebook page. I share!!
The facts will come, just as they always have as we humans try to make sense out of our world and enhance the awesomeness that is LIFE. In the meantime, if you don’t have your FACTS straight and you are perpetuating myths based on misinformation about AUTISM …..
STOP DOING THAT!
Filed under: Uncategorized
Tags: asperger's syndrome, autism, Autism and vaccines, causes of autism, facts, learning about autism, pdd-nos, treatments for autism
Gurl...my son was diagnosed 3 years ago and I wondered why the F I started drinking because of his behavior 5 years ago! Feel you!
glug glug, sister. seriously. i rarely drank more than a glass before diagnosis. GAH!
I sooo feel your angst! for years I have been trying to explain my son's asperger's syndrome to family members who insist he is fine, i'm just a hovering, overreactive mother. they've never spent real tome with him and think because he interacts with them so well I must be off my fricking nut. his cousins, tho, react as children generally do- he's weird, why is he talking about that, and so on. one member thought they would "help" me and talked him out of attending a specialized summer day camp. they woild keep him while I was at work. that lasted 3 days. then it was, I researched this autism thing, and that's not his problem, you need to discipline him! because obviously, in the three days you put into this, you've become an expert and your diagnosis supercedes everything the 10 professionals we see countless times a year have to say. I now try to surround us with people that accept us as we are. fuck the rest, family is who you make them. sorry, gave my own rant there. keep speaking out, if even one person really hears you, it's worth it.
i think we are experts on those we love because we love them. all snowflakes are look different but they are all made of the same substance. keep your head in the game and your heart on your sleeve, riki. good luck.
"I have had many a moment of overwhelming disappointment and frustration when a professional that I trust to educate and guide me says, “I don’t know.” What? If they don’t know, then who does know? The fact (notice that word – fact) is that sometimes there are no answers. "
One of my biggest disappointments when I went to medical school was that we didn't get the 'big book of answers'; I seriously thought we understood way more than we do, but science churns slowly. But it sounds like you, like many others, understand the fact that there are unknowns and work toward future knowledge rather than accept false certainty (in fake/alt/convenient treatments/fixes). Besides parents (and perhaps the kids themselves), pediatricians and educators, I suspect, are among the folks most interested in finding reasons & aids/solutions/strategies for autism spectrum disorders. Let's keep supporting real research as a way to target our emotions to action. Touting unproven and perhaps dangerous modalities because their providers seem sure that they have *the* answer can be personally gratifying & supporting. But don't say you *know* how to cure a multifactorial disorder with a huge number of manifestations if you only *believe* it worked for your child. And if there's been solid evidence against the techniques your using or the beliefs you're holding, maybe take a step back and re-assess why you think they're working in the first place.
tl/dr: Nice article because it's not that simple :)
thanks doc. i work with a physician every day. he is teaching me so much about the brain and development and research and giving me access to cutting edge screening instruments and diagnostic tools but only so that i can help people find comfort and relief and to provide support. we cannot know all the answers. long, long ago people thought the world was flat and that if they drained some blood from sick people, it would make them well. UGH! further evidence that if we don't keep learning and growing we will live in fear. thanks for commenting.
My son was diagnosed 14 years ago when he was 2. He was all over the map, so of course they used the catch all "Autism Spectrum Disorder". To top that off, he is also blind. So being severely autistic and blind, teachers & doctors are ALWAYS at a loss when we ask for information. Deep down they don't know. I learned that the hard way. I used to cry and beg for answers, and it finally came down to "try this..." and "I don't know". We have treated him like a regular kid since day 1 (he was a preemie too, born at 23 weeks, 1 pound 6 ounces) because I was a barely 20 year old kid and didn't know any better. Which turned out to be the BEST thing for him. Bottom line is I do listen to his doctor, and I take advice from his teachers etc... with a grain of salt, but I am the EXPERT because I have raised him for the past 16 years and I don't freak out anymore when they give me "I don't know". I too read everything I can get my hands on, and ask lots of questions etc... It seems lately what I have seen in articles is instead of anything helpful, just horror stories of another baby with autism being mistreated by a teacher, parent etc... oh boy, now I'm ranting! lol ok i'm done now. lol
rant away, sister. we can only do our best.
*Applause. Well said Nicole. In fact this is one of the rare times I have very little else to say as you've said it perfectly,
thanks love. mean it.
I wondered where you were going at first...which information were you about to torpedo? LOL I love you :) That was so smart. because the flat out truth is there are so many causes of Autism Spectrum disorders. starts with genetics and certain predispositions...after that who can say? A million factors. A million situations. 1 in 110 kids. But each parent needs to have their eyes and ears open. We are the only ones with the access to and knowledge of our kids to know what is working or not working for our kids... and God watch over and someone intervene for all those ones with shitty parents.
THANK YOU. enuf said, know what I'm sayin'?
My comment as short and sweet as I wanted it to be sounds wrong. I meant, thank you for your words and that is all I wanted to say because you have said it all. :)
I totally agree! Through personal, and professional experience, I have learned that there isn't always an answer, that 'X' doesn't always mark the spot. Though my son was tested at age 4, he wasn't diagnosed til age 11. The years between were very frustrating, especially since I really believed he had ASD. I'm not saying things are great now but at least we, for the most part, know what we're dealing with. Keep up the good work! I really enjoy your blog.
Wow. I'm with you. My 10 year old son has moderate/severe autism -- and most of the real help we've gotten has NOT come from doctors. It's come from dieticians, OTs, speech therapists, teachers and other parents. The doctors, for the most part, have known nothing and had nothing to add. In fact, they keep giving up on us when his problems do not lend themselves to easy curing with a pill. But we believe in him, and he is making progress, bit by tiny bit. He is happy, loving and energetic, and even though he doesn't use a lot of them, he loves words. Keep on hanging tough!
All I can say is AMEN!!!!!!!
My son was diagnosed on the spectrum when he was in first grade (he's in third now), after a HELLISH year in kindergarten and behaviour struggles in first grade we sought help. One thing I never did was get emotional, I never got upset, I was happy! I was happy because FINALLY an explanation as to why he was different and why he was doing things certain ways. For me it was a sigh of relief, I knew from infancy that he was different and now I know to what extent. With age, therapy and an very understanding and accommodating charter school he is learning self control, do I expect him to be "cured', fuck no and I don't want him to either. I love my quirky son for who he is and I wouldn't change him for anything.