No longer on the FB site for Ayn

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I'm sorry the whole thing has been so stressful for you, liloleme. I didn't realize that much was going on with you about this.

For me, the facebook site was never something I would join; facebook is my "real" life, kept entirely separate from my forum life, and I guess separate from AS advocacy as well (kind of an inadvertent result of having been a moderator here). But, as I posted before, I was able to decide early on what I saw as the issue here, and what I thought I could or should do to help advocate, so I did that.

The anti-vaccine crowd is like a cult religion. Some are obsessed to the point of having lost the ability to carry on a reasoned interaction. I just avoid it all; I "get" that they love their kids and needed an answer to what is an elusive question; I "get" how they can think they see improvement and tie it to the questionable therapy; I "get" how easy it is to find "science" that seems to support their conclusions. I wish I knew a way to convince them otherwise, but since I don't walk in their shoes (my son has always had a great prognosis), there simply is no way I ever could. My hope is that if sites like this keep strong parenting boards that allow voices like one hears here to be the those first voices that reach those first confronting all the questions about AS, that maybe less people will fall prey to what I truly believe is a misguided theory. All we can do is make sure OUR voices are heard, that OUR methods and successes get a stage.

You know, this is the only autism board for parents I've found up till now that I really feel comfortable posting on. All the others seem to be full of the anti-vaccine folks.

I'm a little worried about what will happen when I'm back in the US and will have to deal with these people. How do you guys handle it? I don't want to end up punching someone in the face!

I haven't joined any local support groups or such in part because I am worried I just wouldn't be on the same page, but also because I don't feel I really need it; there is enough AS in our social circle for me to get feedback, and it feels like most of those families approach it in a way to similar to what we've chosen.

I mostly don't talk therapy with other parents. School services, IEP meetings, but not therapies. I can usually deflect anything that starts in that direction by saying, "we've been able to get what we felt our son needed through the school and by trying the techniques like the one I was just telling you about," or "since my son is high functioning and able to communicate, you might find it interesting to know that he has told us ABC about that behavior." But I'm in a different layer, largely because my son is: the people I most naturally come into contact with are trying to sort out "fringe" kids, that may or may not be ASD, and for that I can chat up a storm, that I think (hope?) is appreciated . For the ones who aren't in the same situation, I just don't feel like I have the right to tell them what to think or do, or pretend to be an authority. My son doesn't face the same roadblocks; I don't really walk in their shoes. So while sharing an opinion in a place like this where people come looking for information is one thing; sharing that elsewhere doesn't feel right to me.

Some of our members are much better informed on the topic, and I hope they do advocate locally. We all need to figure out what we do best, on what advocacy we carry authority, and then do it. For me, in real life, it has been general AS awareness, helping people understand children or family members who may have flown under the radar, that aren't obvious. For you, it might turn out to be vaccine advocacy. You'll kind of know when you get there, when you've tested the water and felt encouraged to continue on ...

Thanks. Like you said, though, the whole anti-vax thing is like a cult...I hope I never run into anyone who will try to convert me!

It probably helps to have a speech ready, like most of us do for all the religious missionaries that come to our doors. "I appreciate that you are passionate about this, but I've done my research and I am really comfortable that I've found the (religion, belief system, methodology) that will best suit my family. Thank you for caring."

OK, lol, I might be a little different with a vaccine die hard, but the above speech always works with anyone who thinks they are trying to save my soul. Possible vaccine variation: "I understand the theory you advocate, and I can assure you that I have researched it thoroughly, but I have reached a different conclusion. If you wish to hear my side of it, I am happy to share it."

I never feel the need to have anything ready for those people. Or anybody that tries shoving their ideas down my throat. I will shut them down and not engage in a discussion. Those types rarely listen and only speak from their agenda.

Ha ha, that's a lot better and civil than what I had planned, which was, "I've looking into it and it doesn't seem to have much scientific validity..."

I really have no idea why you would come and post all of the things you have said about that group. I have been in that group from the beginning and what you are saying is not true at all. The way you are making people in that group sound is so sad given that they are all there to help a situation that needs help. It is an open group so yes, people can post things about different topics that they believe apply and I believe people are entitled to their opinion, the way you are saying it all gies on about mis-information regarding Autism is way off base.
For whatever reason, it is obvious you have a grudge so you are here bashing a group that has done a lot of work to support that poor little girl. for those of you who want to go and check out the group for your own information i will post the link here and you will see that this person on here is trying to snow all of you about what goes on there. So sad that someone would take their grievances and mis-use another group. Shame!
The group is called "Help bring Little Autistic Girl back to her Daddy".
You can find it by doing a search on FB.

This is a really old post and there is no reason to bring it back up but since you felt the need. Im sorry but I was personally attacked on that wall and its great that you didnt see it, perhaps you are blind? or perhaps you have not been there the whole time and came when all of that was finally deleted. Dont accuse me of bashing anyone because I was the person who was attacked for my views as if I was not allowed to have an opinion or express my beliefs. I am autistic and I have three autistic children.
Also I had many personal conversations with Derek after this (If you dont believe me you can ask him personally my name is April Anjard) and my husband ( whos name is Christophe and who is a biologist) and I explained to him how vaccines are made and he was very open to learning and very interested. I find him to be a very dedicated and intelligent man.
He did not deserve to have his child taken from him, he did nothing wrong. I believe the system in BC has become power hungry and think they OWN other peoples children. I am afraid that Ayn is probably permanently damaged because of these people and I hope that he is able to sue them for what they have done.
I still stand by my posts that many of the people on that site at the time this "vaccine war" was going on, are insane and seemed worry less about their children than they do about who supposedly "poisoned" them. They wanted some sort of revenge and as an autistic person I was offended by their views on autism and by the fact that they did not want to listen to any of the autistic people that came on the site to try to explain what it is like to be autistic. They as "typical" people insisted that they knew more than us "damaged" autistic people knew. If things have changed that is wonderful but I am still not going there. I have too many things going on in my life like the recent loss of one of my children and a very serious bone disease to be attacked by other people. This is the only place I feel safe but you have to come in here and attack me anyway because you feel the need to, maybe you were bored today?
Im so angry right now I really want to let loose on you but Ive learned to control myself at least in type....verbally this would be very ugly.
You are the one who is sad bringing this up and if you read ALL the posts I do encourage people to go to the wall and to support Derek. Try going back and READING all the posts. I really cant stand people who read one or two posts or skim read then try to be all high and mighty.
Yes I am such a terrible person, you can ask anyone here how awful I am!

Last edited by liloleme on 06 Dec 2011, 7:22 am, edited 1 time in total.

Did you read this post???? Obviously not! Gotta love people who have never been on this site before who finds something on a google search and then come on here and spew garbage at someone they know nothing about and dont even have the decency to read all that is in the post.

This is a place where people can talk, and sometimes that talk isn't going to be all sunshine all roses. And, to be honest, I don't see where she went that wrong to earn this level of ire. She was rough at first, sure, because she was upset by something that had happened on the page, but a little talk spun things into perspective. All these feelings were settled months ago, with the thread following it's natural course to the back pages. ... Until you brought it back up.

I can sympathize with the idea that wherever an autistic cause comes up, there go the anti-vaccine folks. And I, too, disagree with the anti-vaccine true believers, and have a hard time keeping respectful in conversations with them because, as often happens when someone is a true believer in a conspiracy, if you don't echo their thoughts, you make it quickly onto the enemy or blind robot page, in their eyes, which makes further civil conversation anywhere in the same room nearly impossible. I will not own either, and it makes it difficult to post anywhere but here, because here folks mostly own the genetic thread of ASD in their families. Maybe it has gotten better over time as more and more science points away from vaccines, and the removal of thimerisol kills the original prime theory, it has been years since I've tried, but the idea of wading back into that anywhere isn't very inviting to me. It isn't about the one Facebook page, it is about what happened almost everywhere else when some of us tried to hook up with parents of ASD children.

And all that gets doubly difficult when you are a parent on the spectrum yourself, as the OP is, because following all the unwritten rules of a parenting group on the Internet is understandably difficult for them, not to mention dealing with the people who want to forget that ASD is a spectrum, and want to assume that if you can post, or have had kids, you can't actually have AS, and thus are just making excuses, or are trolling.

Which I point out because to understand why the OP got as upset as she did, you've got to understand the whole of her experience beyond that one page.

So how are things supposed to be done here? First, follow out the thread, and see how the thinking of the OP is evolving. Then, if you still disagree, start to tactfully either point that out, or ask questions to see what movement of thought can or should happen. We make a lot of great progress that way around here.