This is not the post I wanted to make.

I wanted to share some nice zen photos of the Louisville Waterfront, but then my plans changed. They changed when someone told me today that bathing my son in distilled water with clay would help cure him of his autism. I know the person means well, I know that for an absolute fact, and I know it’s possible that this little rant will be taken wrong. But I am so very upset about the overwhelming amount of truly shitty science out there, particularly when it comes to autism (and all mental illness/disability).

So let me tell you what autism is not. Autism is not heavy metal poisoning. Autism is not a disease that a detoxification can cure. There is NO trusted major medical organization that believes autism and vaccines are linked. In fact the original report that linked the two (which appeared in The Lancet in 1998) has been proven to be complete and utter bunk. Andrew Wakefield, the author, accused of manipulating evidence, conflicts of interest (for the layman this mean of being paid to say what he said) and breaking ethical codes was FOUND GUILTY in 2010 of serious professional misconduct and was disallowed from ever practicing medicine in the UK again–because of the report that ALL the “Vaccines cause autism” fervor are based on.

Did you get that? The man who wrote the report that first linked vaccines and autism LOST HIS MEDICAL LICENSE FOR LYING IN THE REPORT.

In fact people in the UK and Ireland became so terrified of vaccines that cases of MMR (the main vaccine under fire) skyrocketed and PEOPLE DIED.

For those interested in more detail (and hey, look you don’t have to do the research) there is strong evidence that Wakefield was paid to write and publish his report by a group of people trying to sue vaccine makers. They wanted evidence and Wakefield MADE IT UP FOR MONEY so they had a case to begin with. Wakefield’s paper was quickly discredited and tons of money have been spent by medical organizations trying to counteract the very dangerous anti-vaccine movement that Wakefield started solely to line his pockets.

There is ONE case of a family successfully suing a vaccine makers for “autism” in their child, but medical science has proven that the child has a gastrointestinal disease that is aggravated by the vaccine and caused brain inflammation, a condition called acute disseminated encephalomyelitis. The family won their case because the vaccine was judged to have legally caused the ADEM NOT the PDD (and autism spectrum disorder).

However, in 2008 for the first time in 14 years measles was declared endemic in the UK. We almost had it killed off and now kids are dying of it again, and more medical organizations each year are being forced to declare measles epidemics.

You know what autism is? Literally the autistic brain is shaped differently. Studies show that the autistic brain is often larger, and connected to itself differently than the “typical” name. Autism is a very real condition that one in 160 people live with. It is a spectrum disorder, so they aren’t all Rain man, or savants. Mostly they’re people with flaws, sometimes serious flaws. Some don’t speak. Some have overwhelming sensory disorders that make being outside their their home a nightmare.

ASD is a family issue. The divorce rates in couples caring for autistic children is an estimated 80%. And worse because most autistic children don’t “look” disabled there is often a complete lack of understanding when it comes to social perceptions of autism.

You know what doesn’t help? Jenny McCarthy doesn’t help. Preaching the dangers of modern preservatives and “chemicals in the water” doesn’t help. Telling parents their child can be cured by certain foods, certain medicines and prayer doesn’t help. Telling kids who already have a very real awareness that they’re different that there broken and need to be “fixed” doesn’t help.

When I’m standing there worrying about my son’s ability to handle me (his emotional keystone) being gone at work all day (and being gone to WFC for four days in only a few weeks), and to be able to handle moving to middle school at the end of this school year. Yeah, things are a little raw right now. I don’t expect anyone to know this. One of the assistants in my son’s class left this week because two of her family members were in a bad accident and hospitalized. My son is caught somewhere between knowing that this is a real bad situation and his brain freaking out because his life has changed in a way he doesn’t understand yet. He’s been caught up in emotions he can’t just sit down and explain to us, or work through with us. We only know because we saw that something had him upset and we asked.

This is not a problem a bath tub full of distilled water and clay can fix. (Which by the way is bunk too. If all my aquarium research has taught me anything it’s that chemical make up of water is essential to the health of all living things. Yeah, chlorine is bad, but any aquarium owner will tell you distilled or purified water can be just as bad because it completely lacks minerals, chemicals and nutrients that creatures NEED to survive.) It’s not a problem dragging my son to doctors that profit of plugging diet foods and chelation therapy can solve.

The core treatment for autism is steeped in understanding, compassion and most of all starting from where their mind is and trying to improve things rather than force them to be something they aren’t.

My son is not broken. He does not need to be cured. My family doesn’t need us wasting our finances on every bit of snake oil and dream shard when instead we could be spending it on the things that make my son smile.

I understand wanting to help. Start by asking “How can I help?” instead of telling people what they should do to “fix” their kids. Try listening instead of telling. You would be amazed at how much a sympathetic ear helps. And amazed at how much half-assed pseudo-science can hurt.

 

4 Comments

  1. Amen!
    And I applaud you for your efforts not only in your family life, but in your writing career, PLUS taking the time to spell it out for people.
    Not sure if I have previously mentioned, but my cover artist is on the spectrum and I realize why she is so amazingly talented- she can literally see and imagine things the way other people can’t and that makes for amazing artwork that no one else can create. I love creative collaborations with her, her approach is always fresh and interesting and I trust her 100% and more with my words.
    She has made a life out of working WITH her brain instead of against it and really turned a “bug” into a “feature”!
    Keep preaching it, someday the message will get through!

    • Michele Lee says:

      Exactly. I mean, my kiddo is great at some things (he is great at drawing) and bad at other things (oral communication). But we present it like that and he’s proven to be a determined and most of all HAPPY. You don’t get happy kids if you teach them there’s something wrong with them. You don’t get strong, confidence kids if you teach them that they need to be fixed. Especially when the whole “science” of it is based on some jerk getting paid off by people trying to profit off nothing.

      Funny that you mention your cover artist, my illustrator is OCD. My DH is OCD and borderline ASD. My boss is borderline ASD and is one of best bosses I’ve ever had. Her attention to detail is fantastic, so is her support/management style. I know so many people with mental issues that its just automatic to handle things a certain way. There are so many ways to turn disabilities into strengths instead of mourning that they aren’t “normal” in the first place.

  2. Pamela L says:

    Thank you for posting this. As the mother of a teenage daughter with autism, I am so tired of the stares we get when she has an emotional break down. It’s as if people are judging us because, like you said, they can’t tell if a child has autism or not. Instead, we’re made to feel like we’re bad parents.

    And I’m glad to see someone speaking out against the pseudo-science. Medical hype doesn’t help.

    My daughter enjoys drawing. We buy her pens, markers, sketch pads, pencils, notebooks, anything to encourage her creativity. My husband’s youngest daughter (by his first wife), a talented artist, passed away a week after her 30th birthday. Maybe our daughter is meant to continue in her step-sister’s footsteps.

    (Thanks for letting me ramble!)

    Pam