Trigger Warning: Some dangerous cure attempts are mentioned in passing. So are organizations that support them.
I was invited to join this group on Facebook. Twice, actually. Once as a comment here, and once as a message to my page. (Yes, I have a Facebook page. It's here if you care. Or if you don't care. Whatever.) I mean, you can't actually join a group with a page, and I'm only semi-out on Facebook, and I'm not trying to make the fact that I'm autistic google-able with my real name, so there are logistical difficulties with that, but I lurk. And someone actually shared my stuff on a couple occasions, which is cool. (My overall impression is that these are good, well intentioned parents. That doesn't mean everyone is perfect, since, you know, there is a LOT of misinformation out there, some of it harmful. At the very least, no one is arguing that bleach enemas are a good idea or that vaccines gave me autism. I mostly get the impression that people just don't know how awful Autism Speaks, Jenny McCarthy, Age of Autism, Generation Rescue, etc really are for autistic people, not that they actually think that being autistic is inherently a huge tragedy that means their kids will never do anything ever (they can.))
So, I've read some of the posts and some of the conversations. I'll admit that the story that mentioned Jenny McCarthy talking about her son made me cringe, since, you know, JENNY MCCARTHY. She did found Generation Rescue, after all, and they're the one's who run that Autism One conference where they talked about bleach enemas as a cure for autism. (Yes, I will be talking about the bleach enemas thing in my paper tracing cure problems-that one is a very good example of "quack cures that can cause permanent damage." And no one seems to be quite as strongly anti-cure as I am, but then, it's not their brains that could get forcibly re-wired, at least, not in the cases of the parents. (I think there are a couple actually autistic people in the group? But the only one I know of links to Autism Speaks on her page, which kind of scares me. Because, you know, Autism Speaks is focused on finding a cure that autistic people seem to mostly not want. Plus they compare autism to diseases that actually kill people and threaten suit against autistic minors who made legally protected parodies of their site and use the works of autistic people without permission, then getting the attribution wrong.
Anyways, no one seems as strongly anti-cure as I am, but then, it's not as much that I'm anti-cure as that I'm anti-"finding a cure before getting society to a point where autistic people would actually get the choice of becoming neurotypical or staying autistic," anti-"ignoring what autistic people tell you would actually help," and anti-"parents being able to make the decision to cure or not for their kids." Which in modern Earth, is pretty functionally anti-cure, so I usually just go with that. However, if an autistic person (NOT the person's mother/father/gaurdian) decided that being not autistic was the way to go for that person's own life, I'll not argue. Heck, get society to the point where it would be truly voluntary, and you would have a shot at getting me to participate in any of the relevant studies that didn't carry the risk of an accidental cure. Some of the not being as strongly anti-cure is based in functioning arguments, which is always difficult to see, but then, it's pretty close to just the self-advocates who argue against functioning labels with any consistency. You'll occasionally see parents joining that one, but not that often.
All this said, I'm not seeing any of the "I'm abusing my kid!" red flags or anything that would trigger me. No one's come from there to tell me that I can't possibly understand their position or called me too high functioning to understand. (I understand fine. Functioning labels are fail. Extreme academic giftedness gets all the credit for people not having put me in special classes, and yes, they tried. I stim a lot. And, you know, you can't actually tell functioning levels over the internet. Plus "high functioning" might really mean "can pass for just a smart weird person unless you see the backstory problems" anyways.) The "worst" I've gotten is an anonymous comment from someone who pretty clearly just didn't know about all the REALLY BAD THINGS Autism Speaks does and thought it was just an advocacy group, and I don't even have evidence to suggest that the comment is related to the group. That kind of comment is just a part of being a blog that talks about autism a lot and isn't nice to Autism Speaks. And, you know, all the blogs I've seen have names changed/last names left out/sometimes both, with the exception of an adult talking about her own stuff, not kids, and she can make her own decisions about disclosing and not. That's kind of important, since having a disability disclosed for you can be pretty problematic when looking for jobs comes around, and yes, autistic people do sometimes look for jobs. (My disclosure status: Every in-person employer could figure it out, but none of them have known while I worked for them unless they figured it out themselves. I never did an official disclosure with my online employer, but it came up in passing and one of the administrators therefore knows. This is only possible because I don't need any accommodations, but waiting to disclose until after the job offer is a pretty common thing to do.)
So, I have now said many things. It's actually nice to get some parent perspectives that aren't going "OMG my kid is a tragedy!" and trying to cure their kids using hyperbaric chambers, chelation, or bleach enemas. It's nice to deal with parents who realize that going gluten free won't suddenly make their kid not autistic any more, though it will help with comfort/health issues if the kid has an intolerance or allergy. And it's nice to deal with parents who haven't pulled functioning labels on me. Some of them even seem to be heading in the neurodiversity direction, which is quite awesome. One talked about standing with Henry. And I think I have rambled enough.
I was invited to join this group on Facebook. Twice, actually. Once as a comment here, and once as a message to my page. (Yes, I have a Facebook page. It's here if you care. Or if you don't care. Whatever.) I mean, you can't actually join a group with a page, and I'm only semi-out on Facebook, and I'm not trying to make the fact that I'm autistic google-able with my real name, so there are logistical difficulties with that, but I lurk. And someone actually shared my stuff on a couple occasions, which is cool. (My overall impression is that these are good, well intentioned parents. That doesn't mean everyone is perfect, since, you know, there is a LOT of misinformation out there, some of it harmful. At the very least, no one is arguing that bleach enemas are a good idea or that vaccines gave me autism. I mostly get the impression that people just don't know how awful Autism Speaks, Jenny McCarthy, Age of Autism, Generation Rescue, etc really are for autistic people, not that they actually think that being autistic is inherently a huge tragedy that means their kids will never do anything ever (they can.))
So, I've read some of the posts and some of the conversations. I'll admit that the story that mentioned Jenny McCarthy talking about her son made me cringe, since, you know, JENNY MCCARTHY. She did found Generation Rescue, after all, and they're the one's who run that Autism One conference where they talked about bleach enemas as a cure for autism. (Yes, I will be talking about the bleach enemas thing in my paper tracing cure problems-that one is a very good example of "quack cures that can cause permanent damage." And no one seems to be quite as strongly anti-cure as I am, but then, it's not their brains that could get forcibly re-wired, at least, not in the cases of the parents. (I think there are a couple actually autistic people in the group? But the only one I know of links to Autism Speaks on her page, which kind of scares me. Because, you know, Autism Speaks is focused on finding a cure that autistic people seem to mostly not want. Plus they compare autism to diseases that actually kill people and threaten suit against autistic minors who made legally protected parodies of their site and use the works of autistic people without permission, then getting the attribution wrong.
Anyways, no one seems as strongly anti-cure as I am, but then, it's not as much that I'm anti-cure as that I'm anti-"finding a cure before getting society to a point where autistic people would actually get the choice of becoming neurotypical or staying autistic," anti-"ignoring what autistic people tell you would actually help," and anti-"parents being able to make the decision to cure or not for their kids." Which in modern Earth, is pretty functionally anti-cure, so I usually just go with that. However, if an autistic person (NOT the person's mother/father/gaurdian) decided that being not autistic was the way to go for that person's own life, I'll not argue. Heck, get society to the point where it would be truly voluntary, and you would have a shot at getting me to participate in any of the relevant studies that didn't carry the risk of an accidental cure. Some of the not being as strongly anti-cure is based in functioning arguments, which is always difficult to see, but then, it's pretty close to just the self-advocates who argue against functioning labels with any consistency. You'll occasionally see parents joining that one, but not that often.
All this said, I'm not seeing any of the "I'm abusing my kid!" red flags or anything that would trigger me. No one's come from there to tell me that I can't possibly understand their position or called me too high functioning to understand. (I understand fine. Functioning labels are fail. Extreme academic giftedness gets all the credit for people not having put me in special classes, and yes, they tried. I stim a lot. And, you know, you can't actually tell functioning levels over the internet. Plus "high functioning" might really mean "can pass for just a smart weird person unless you see the backstory problems" anyways.) The "worst" I've gotten is an anonymous comment from someone who pretty clearly just didn't know about all the REALLY BAD THINGS Autism Speaks does and thought it was just an advocacy group, and I don't even have evidence to suggest that the comment is related to the group. That kind of comment is just a part of being a blog that talks about autism a lot and isn't nice to Autism Speaks. And, you know, all the blogs I've seen have names changed/last names left out/sometimes both, with the exception of an adult talking about her own stuff, not kids, and she can make her own decisions about disclosing and not. That's kind of important, since having a disability disclosed for you can be pretty problematic when looking for jobs comes around, and yes, autistic people do sometimes look for jobs. (My disclosure status: Every in-person employer could figure it out, but none of them have known while I worked for them unless they figured it out themselves. I never did an official disclosure with my online employer, but it came up in passing and one of the administrators therefore knows. This is only possible because I don't need any accommodations, but waiting to disclose until after the job offer is a pretty common thing to do.)
So, I have now said many things. It's actually nice to get some parent perspectives that aren't going "OMG my kid is a tragedy!" and trying to cure their kids using hyperbaric chambers, chelation, or bleach enemas. It's nice to deal with parents who realize that going gluten free won't suddenly make their kid not autistic any more, though it will help with comfort/health issues if the kid has an intolerance or allergy. And it's nice to deal with parents who haven't pulled functioning labels on me. Some of them even seem to be heading in the neurodiversity direction, which is quite awesome. One talked about standing with Henry. And I think I have rambled enough.
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