Friday, November 30, 2007

What do you tell a newly hatched curebie?

That's not a rhetorical question, suggestions would be very much appreciated.

Here's the thing. I'm in this group for parents of kids with autism. It's a small group and everyone in it is really great in terms of attitudes. Recently there is a new person who has not actually shown up for a meeting but who has been posting links to things she's discovered on the email list. You can see her progression as she has posted links to various trashy books, then more and more biomed stuff and then a link to Generation Rescue. At that point I had to speak up and point out that there are risks, including death, associated with the treatments promoted with that website. At that point another new person chimed in an said that, as far as she knew, only one child had been killed by chelation and that thousands of kids did it safely every year.

I could, of course, go ballistic on these guys and, while I'm at it, bring up the whole issue of the gross disrespect that the curebies they are so impressed by show towards autistic people. The thing thing is though, that I don't want to scare them off. They are new to the whole business and they are optimistically exploring an avenue that gives them hope. If I point out, even if ever so politely, that they path they are wandering down is dangerous and evil, they will probably just leave the group. On the other hand, if I sit quiet, other new members in the group may end up following the "great finds" that this person keeps sharing. They may even get the impression that the group as a whole endorses that kind of thing (silence is consent, don't you know).

I have probably completely alienated this particular individual anyway, by pointing out the risk of death thing, but the situation is going to present itself again, and I want to have policy for dealing with it. I see it as a kind of a, "Do we negotiate with North Korea?" type dilemma but perhaps there are some simple (or complex) answers that I am overlooking.

Does anyone have any ideas?


Marla Fauchier Baltes said...

I have been in that situation too and I always turn red in the face and squirm in my seat wanting to blurt out a whole lot of information. It is so hard for me to be quiet.

My husband and I used to facilitate a support group. You will always have people with varying ideas and some that will push them till you want to scream. I would like to say I have some great wisdom on how to handle it. I don't. I eventually became burnt out and stopped the group and stopped going to groups all together. So, that is not the best way to handle that. However, for me it has done wonders with lowering my stress level and helping me to focus on different aspects of our life. But, I understand the need for the groups too and would encourage people to go, I just can't any more.

I guess, looking back I think listening is the best. It is so true that people who are new to it are investigating everything and that is not at all bad. If they get super pushy and exclude people from talking and sharing and start bringing stuff to sell at the group then someone will have to talk to that person in private. Never easy!

I hope the group keeps going good for you. I also don't do well with the online chats and stuff. I just get too worked up. I stopped those too and just blog now.

Niksmom said...

I think, if I were on the receiving end of the opposing point of view I might take it better if I heard something like: Well, you know, there's an awful lot of controversy around such and such; you know there have been reports of death and significant illness/injury (fill in as appropriate). I can't tell you what you should do but I can tell you that it is something I am vehemently opposed to for my own child and cannot endorse it at all. You really need to make sure you do thorough research and make informed decisions."

Or something along those lines. I guess what I'm driving at here is that an impassioned response can sometimes put the recipient on the defensive and then you come off just as bad as those curebies who trash the whole non-biomed and/or neurodiversity element, too. (I hope that made sense??) It's a tricky balancing act for sure. I guess you just need to decide what the objective is: is it to trash biomed or is it to help families find their own way regardless of whether you condone their choice? (Tha's rhetorical, based on what i have read from you I think you fall into the latter camp, yes?)

Good luck!

Steve D said...

Another approach may be to mention that autism is a "boom market" for alternative medicine since it is so poorly understood.
Recommend they do a lot of safety and efficacy research, warn them about the scientific value (lack thereof) of parent testimonials.

Finally, let them know in a non-judgmental tone that you have rejected such treatments for your own kid based on your research, and you'd be happy to explain more if they are interested.
Beyond that, there's not much you can do.

Judith said...

Stop and really, really, really think about it. No matter how right you are, do you think you'll be able to get through to them?

Probably not.

When people hang their hopes on these sort of things, it is extremely difficult to pull them back to reality...

My approach tends to be just to smile and listen. The life I live and the treatments I pursue for my son are the best way of getting my message across ...

I also just try to focus on the things we have in common instead of the differences we have. Most of the time that works beautifully.

VAB said...

Thanks for your thoughts everyone. I guess the truth is that there is no sense antagonizing people whose minds one is unlikely to change. On the other hand, it's important to let those listening in that curbie views are not the only ones out there.

A very smart woman in the group actually handled it in a very clever way. She said that this she didn't doubt her kids had some toxins in them, and for that matter she almost certainly did too. She said that she wouldn't mind getting a homeopathic detox herself. But in her experience all these treatments, though very nice, didn't do nearly as much as speech therapy, OT and tutoring and, as she didn't have the time and money for both, she'd leave the detoxing.