7/19/2009

Questions and Ponderings Over Mercury, Autism, AoA, and Hubris

Give Age of Autism some credit: they offer a lot of choices for parents to blame their child's autism on and a lot of opportunity to vent their vitriol, both about their children's situation and anyone who strays into AoA, looks around, goes Holy crap, these people are off, and then attempts to post on there. AoA must have a quota on the amount of dissent they'll allow on, just enough to give the rabid loyalists someone to feed on. This time up it was Angela's turn. She's handled herself well on her blog, since of course AoA is too cowardly to let her rebuttals on.

I've said plenty about Obradovic's latests pieces over the last month, and I almost feel like I'm ganging up on her, since I'm focusing on her again, but I keep coming back to this latest piece and how it conflicts with her previous postings.

And I keep thinking that AoA doesn't care what you think caused the autism so long as it's something that's been done to your child, whatever component you think in vaccines, whatever vaccine, lyme diseases, SV-40, no questions asked. It makes no sense. For some it's the DTaP or the previous DPT, for others it's the MMR, for still others it's mercury poisoning from the thimerosal in vaccines. Obradovic herself insists that mercury poisoning is autism; that the symptoms are identical, and parents who personally believe it was a vaccine with no thimerosal in it at all that caused their child's autism nod their heads in agreement and high five each other, yup, that's it. You go, Julie.


Obradovic writes elsewhere on AoA: "Julie Obradovic is the mom of a recovered child." (http://www.ageofautism.com/2008/09/an-autism-moms) So, I'm trying really hard to understand where she's coming from on the newest piece. Why such fierce rage at everyone who isn't her and doesn't have her lousy lot in life, to include parents whose children have cancer? (And yes, I am well aware of my tendency to perseverate on some topics). What the hell kind of medicine are you giving a "recovered" child if her autism is gone and she is well: "I think about the 86 weekends I have gotten up in the middle of the night on Friday, Saturday and Sunday just to give her medicine, and the 14 more I have to go." (http://www.ageofautism.com/2009/07/autism-perception-a-bump-in-the-road.html)

I don't get it. I don't get how on September 15, 2008, Eve was a "recovered child" but come this week, Julie's just a contributing editor. Is that because her rant would have looked beyond ridiculous if the tag line at the end was: "Julie Obradovic is the mom of a recovered child."

I also don't get several things in her letter to Offit from September. (http://www.ageofautism.com/2008/09/an-autism-moms)

1. Where are you getting your "With 1 in 20 families now being affected by Autism, and thousands of those families recovering their children as we did" information? How exactly, even with your 1 in 67 boys number, is that 1 in 20 families? And thousands recovered? Where is your evidence of that, other than testimonials and availability heuristic clouding your judgment?

2. "These people know that I am a rational, logical, courageous, highly educated, intelligent mother who pulled her own child out of the depths of Autism." See, not getting this contrasted with your latest post, nor the tooting of your own horn. I'm pretty sure if you're saying you're courageous, well, you might want to add a few other descriptors, as well. Like narcissistic. You know? Because your latest rant is a whole lot more about what YOU've suffered, what YOU feel, how autism has affected YOU and not about Eve, and about how YOU haven't been given the attention, resources, empathy, sympathy YOU deserved. Except in the September post, I guess you were putting on your game face, right?

3. "Despite the terrible odds against us, we got her. My daughter no longer qualifies as having Autism. " From September. "[E]ven though Eve is technically recovered from Autism, she is like what Jenny describes when she says, “You can recover from getting hit by a bus, but you may never be the same.” Only Eve wasn’t hit by a bus; she was hit by a Mac truck." From July. And boy are you bitter about the money and the extra work you're having to do to send her to special therapy. I don't get it. I don't get the bitter. I don't get the resentment. And I don't get the change from the glowing she's recovered to the well, not really.

4. I do see that the martyr complex goes back awhile, though. "Instead of critics thanking me for preventing one more person from being dependent on the state for the rest of her life, thus saving them thousands of tax dollars in lifetime care, I am portrayed as an irresponsible parent who just couldn’t accept that she is genetically flawed." (September post) Maybe you aren't being thanked because there is no good evidence that thimerosal causes autism and you're trying to convince parents that vaccinations are bad things that steal your child away: "She is dead. That Eve is dead, and I don’t care if people hate me for saying that because that’s how I feel and that’s how I will always feel and there is no closure and there is no comfort just because she can talk now." (July post). I don't get if this is an inherent element of your personality, or if this threw you for such an emotional rollercoaster that you are still reeling and really need some intervention on your own behalf.

There's more I don't get about Julie, but frankly, she's taken up too much room in my brain this weekend. Too much energy.

And there's another person to take a look at on AoA, responding to Julie:

"I’ve often heard that it must be one of the hardest things imaginable, to outlive your child. But I’ve often felt that it must be a thousand times worse to have to watch your child disappear into autism. At least when your child dies, although I suppose it is something that you never really forget or recover from, at least I think it must get somewhat easier over time."

Yet another parent saying parents of dead kids have it easier than parents of children with autism. You suppose? Frak me if this doesn't top Julie for offensive.

10 comments:

Mom26children said...

I have a dear friend who recently lost her amazing 8 year old daughter to cancer. It was horrible and devastating. This child was in the most excrutiating pain...they turned to God to help her...it worked. She died a peaceful death after asking God to end her agony.
This wonderful little girl left behind 2 brothers..one with Aspergers.
This family would give the world to have their Boey back...
Aspergers is nothing compared to what she endured.
Shame on this poster for comparing apples to oranges...way beyond pathetic.

KWombles said...

I completely agree. I'm beyond disgusted with this, and the fact that this is fostering an acceptance at AoA of expressing this kind of unbelievable bunk makes it even worse. Now, the commenters are trying to outdo each other with who can say the most offensive thing all while being righteously put upon.

Julie opened up a can of worms with this and the folks just keep lining up to say the most awful things:

"I think that I would rather my child have cancer. I know this is very controversial, but no one, no one was there with me as my son layed in the fetal position night after night with curled toes and fingers, in so much pain he couldn't even be touched. There was no hope and no help at that time. And I prayed time and again for God to just take him home. I would have rather given him back to his creator than to have him continue in such insurmountable pain."

http://www.ageofautism.com/2009/07/autism-perception-a-bump-in-the-road.html

Not okay. I repeat, not okay. People, if you see someone who has a child with autism expressing this kind of mentality, get them help. If you feel this way, you need help. Your child needs you to get help. I cannot stress this enough. I have no idea what's going on here, other than she's discussing wanting her child with autism to die at that time. That kind of physical pain she's describing? That's not autism. That's something else.

Nostrum said...

I've got a word for a recovered eight year old with a reading delay, abstract thinking problems, and under developed social skills: autistic.

Mom26children said...

I completely agree that these parent's are in such an abyss they are screaming for help emotionally.
I truly hope someone near and dear to them see these cries for help and intervene.
I do not know what is going on either, but it is not good!!!1

kathleen said...

I am just sick over this..this "entitlement" and one upmanship going on at AoA...Julie changed the tone of her posts over time-because, well then she wouldn't be seen as "tragic"..tragedy sells..tragedy gets you attention and accolades..you hit the nail on the head "narccisism" The way they rally around each other-pat each other on the backs bitching about all the "wrongs" done to them...well, I liken it to what a clan meeting might be like.

Connie said...

You know what we should do? We should flood our local newspapers with columns about this topic. Most editorial pages print "guest columnists" from time to time. Heck, we should even name-check AoA, and make our case that parents of special-needs kids don't need to feel the way Julie O feels.

I can see my lead sentence now: "A recent article on the Age of Autism website has generated a firestorm in the autism community, and has implications for all parents of special-needs kids. . . . "

What do you guys think?

KWombles said...

Connie, it's a wonderful idea and an excellent lead sentence. :-)

Connie said...

Another option might be to contact the health/medicine reporter at your local paper (most big-city papers would have someone covering that beat), send him/her the link to Julie's article, and suggest that this might make a good story.

Maybe the reporter could interview some local autism parents or special-needs parents and ask them what they think of Julie's article. I can't imagine too many would agree.

Sirenity said...

My almost sarcastic response to the AoA ppl who feel their children are 'dead'.

Attention to all you self pitying woe is me my child is dead although alive parents:

I will happily legally adopt all your 'dead' children. Feel free to email me for my lawyer information.
then you can have your funeral service and pretend your child 'does not exist' while I give them a home where they will be valued for who they are not judged for who they are not, loved for all their unique ways rather than tormented to 'cure them' and cherished for being a child.

And hell, if I run out of room, I know several families that would welcome with open arms a new addition to their family.

confutata said...

I have an acquaintance who has one child with autism, and another who died at the age of 14 from brain cancer.

Maybe I'll ask her which one is harder.