10/13/2009

Oh you, with the missing the point and pretense to innocence and martyrdom

Twitter / From Age of Autism: If you don't want a cure o ...: "If you don't want a cure or treatment for your/your child's autism, why does it bother you that I do? How is it your business?"

Every busy gal needs a break from studying and grading essays. It dawned on me that I hadn't looked at Age of Autism in a while. Above is one of their latest tweets.

So many problems with this, and it had me thinking on the thread that will not die over at LBRB by Guest Blogger.

First problem: the misconception that people standing up to AoA/GenRes/Safeminds/et al. are against treatment for behaviors that are interfering with successful functioning for the autistic individual. I don't know of any one who isn't for intervention. It's less than honest to suggest that the differences between anti-vaccinists/pro-chelation etc. and those who are for evidence-based practices regarding vaccines and autism can be reduced to anti-vaxxers being pro-treatment and everyone else being anti-treatment.

Second problem: the way this is worded has (I'm guessing it's) Kim Stagliano saying she wants a cure or treatment for me/my child. That would make it my business. I know, nitpicky. She (or whomever) had 140 characters to get it done. Probably not what she meant exactly.

It's my business and society's business in general if your desire to cure your child's autism involves abuse. To pick back up on the post by Guest Blogger at LBRB, nicotine patches slapped furtively on a child in a place where teachers or other caregiver are unlikely to see it, well, that lets me know you know it's wrong. That list of "treatments" that Guest Blogger details at LBRB is abusive. It matters. Your child is not your possession and you do not have the right to indiscriminately experiment on the child with every quack "medicine" that comes along because you have decided your child is defective or "sick." You don't. And any doctor who colludes in the mistreatment and abuse of children by imposing medications and treatments that involve the potential for significant harm to the child with no demonstrated medical necessity is guilty, at the very least, of betraying his Hippocratic Oath.

This really shouldn't be so hard to understand. It should be a no-brainer. You don't get to experiment on your child because you've decided your child's condition is a significant auto-immune disorder or mercury poisoning despite evidence to the contrary. Oh, I know, you can find a quack lab and a quack doc to feed your needs and to "treat" your child. And you can find online communities to support your habits and feed them, as well. It still doesn't make it right.

All children deserve respect, compassion and a safe, caring environment. You fail as parents to do that when you engage in the kind of behavior that it appears many are engaging in, based on the posts in these online support groups for people who believe their children have vaccine-induced autism.

Not all parents who have autistic children and believe them to be autistic due to adverse reactions from vaccines go down these extreme "treatment" trails. Some, perhaps even many, appear to cope adaptively and positively. They aren't stuck; they aren't desperate; they don't think their child is defective. They love their children positively and celebrate their children. What's going on here with this subset who engage in the serious woo and quackery and downright abusive behaviors?

Why are some of us insistent that these parents (who do as this mother that Guest Blogger describes appears to have done) really love their children? What does that mean? Their behaviors are excused because they are doing it out of love? You know, I think it's perfectly acceptable to say this is not the behavior of a loving parent. I think society gets to define what being a good parent is, and we can collectively say that if you do x,y, and z you don't get to claim moral superiority and that you are a loving parent. If your actions traumatize or injure your child, either physically or psychologically, then you're not a good parent. I don't care if you think you have the best of intentions if the result is traumatic. I don't.

Loving your children means looking forward to the adults they will become and being able to look them in the eye as you are held accountable for your actions towards them and for them. Did you treat your child, his personhood, with respect? Did you accord him the dignity he deserves? Did you make your decisions based on what was best for him and not what was convenient for you? Were you logical, reasonable and rational in your decision making regarding your child or did you let fear and other emotions control your decisions? How much of your behavior towards your child is about you? How much of your reaction to your child's autism is about you? Really? Is about making things easier for you?

We've become a lazy nation. We wear our children as our accessories. They are not. My child's social status does not reflect on my social status. If you think yours does, then you're not being a good parent.

6 comments:

NightStorm The Aspiewolf said...

What's going on here with this subset who engage in the serious woo and quackery and downright abusive behaviors?

It the juxtaposition of "Mommy's knows best" and "Human ethics" Parents hate being wrong. Finding out that they are doing more harm than good, scares them.

They simply don't want to be wrong they want to be assured that they are doing whats best for their child, they don't understand at all that because you love your daughters and son and as do the other moms with auties and aspie kids doesn't mean you don't treat the pejorative behaviors. They can't bridge that believe that some treatments are ok like ABA but some are just stupid (LOL lupron?) and they face that they constantly post about treatments say things like "that's the power of bio-med" (I heard that at work) just shows me and everyone else that it's just for the attention. I think deep down mummy is mad that her little boy gets all the attention because of his disability and mummy is jealous.

Parents always make it about them. It's really pathetic.

Liz Ditz said...

Somewhat tangential: Having used nicotine patches (ok, so smoking is bad, NEXT!) I'd make a couple of observations:

1. I'd take slapping a nicotine patch on a kid over chelation, lupron, and a host of other potentially-dangerous "treatments".

Less tangential

2. Bona fide researchers have been investigating nicotine patches for ADHD (I can't get links to work. Go to PubMed and put in ADHD nicotine patch for some citations). Nothing on autism, but there's some executive function/attentional issues overlap between ADHD and autism.

3. But what the patch-slapping moms may not know is that there are ... side effects to the patches. For me, loss of appetite, and most notably, really disturbing and intense dreams. Now I'm an adult & can self-soothe, etc.

I too am wondering about the "thread that will not die". I am wondering if Jennifer L., Stacey, Cristel, Jenny, MJ, sr, et al have noticed that most of their comments are posted at said blog (not a "board" as some of them think) -- unlike what happens at AoA.

davidbrown said...

A couple comments from my own site:
"Frankenpharma": The practice of "off-label" usage by compounding pharmacists and other "alt health" groups actually benefits "Big Pharma" and may be actively encouraged by them.
"Vaccine madness": Munchausen syndrome need not manifest only in the absence of actual illness.

Roger Kulp said...

Second problem: the way this is worded has (I'm guessing it's) Kim Stagliano saying she wants a cure or treatment for me/my child. That would make it my business.

Oh come on,that is just a 180 of what lbrb,ASAN,and the rest all say.They want to deny biomedical treatment to everybody.Sauce or the goose and all that.

Corina Becker said...

Liz Ditz, nicotine patches for ADHD? .... seriously? Okay, I'm totally checking that out.

and Kim, "My child's social status does not reflect on my social status. If you think yours does, then you're not being a good parent. "

woot, throwing down the gauntlet, eh? :D

Lyn said...

Isn't nicotine a toxic poison?
But, it's true. Parents should respect their kids and be compassionate towards them.
A bad attitude about autism can lead to things like aversives.
Man, I do not like that Israel fellow.