Finding Agreement

There is a listserv I've joined recently, about girls/women on the autistic spectrum, called Autism_in_Girls. It's got a mix of parents of autistic girls, autistic women and various other people.
Anyway, I started out commenting on what people said that triggered posts from me, just as usual. Some were about various features of autism, such as one person wanting to know about anxiety in autistic girls, but when some people posted about biomedical treatments for autism, I commented on that as well. I wasn't as careful as I sometimes am about phrasing my comments diplomatically, and this list has a number of people who support biomedical treatment of autism, so an argument broke out. When someone asked whether I'd come to this list in order to upset people, I felt terrified. It was like I was in a village hearing someone yell "we'll drive the witch out of town". I felt like I was about to be cast out.
So far in this story, it's just what I've had happen on many lists. I say what I think and feel, and everyone likes my unique contribution, then I say 'the unsayable' and people suddenly turn against me. Usually what happens next is that I fight for awhile, and then leave the group, feeling beaten down emotionally. But that's not what happened on this list.
I argued awhile, trying to clarify that I hadn't said any of them were bad parents and the various other things people had read into what I'd said, trying to explain what I really meant and why it was important, and then something really unusual happened. I connected with one of my fiercest opponents.
To summarize what happened, the other person (a mother of an autistic girl) said she'd learn much more from me telling my story than posting inflammatory comments. I replied with a reference to the definition of self-narrating zoo exhibit, saying I didn't want to be one. She replied to that by saying she didn't want me to be a self-narrating zoo exhibit - she wanted me to say what was meaningful and why, how my story shaped my view of autism, what made me say the things I said. She wanted to understand me, in short.
And in reply to that, I took a risk and gave her exactly what she'd asked for. I told my story (in two segments). For those of you who don't know, I was sexually abused by my cousins, attended a really bad school from K-4, attended a somewhat better school with a bullying problem from 5-6, was homeschooled from 7-9, read about neurodiversity and self-diagnosed as autistic at 14 or so, attended a high school for grade 10, was diagnosed autistic at 15, and have been homeschooled for grades 11-12. My parents never thought there was anything 'wrong' with me and refused to have me diagnosed with anything other than PTSD, not because they didn't realize I was different, but because they saw no problem with how I was. This is a brief summary, I told my story in much more detail on this list.
And the risk was worth it. I felt very exposed, saying so much about myself to people who were hostile to me, but after that they weren't hostile any more. They still don't agree with me on many things, but I think they're coming to understand my viewpoint. We've made peace, though I don't know how to go on from here to regular conversation again. I'm still trying to figure out what happened. I'd love to know how this can happen in other settings, but I don't understand it, or how much of it was under my control.
On thinking about it, though, I have some theories about things that may have made this different from other similar encounters.
Firstly, I wasn't the only one. There are several autistic women on this list, one of whom was quite vocal in supporting me (and one who was confused by much of it and kept asking people to clarify, which we did as much as possible). I've read in social psychology textbooks that one person expressing a minority viewpoint in a group has little impact on other group members, but if even one other person expresses agreement, the minority is much more powerful. So that might be part of it - though I've seen times in which multiple autistic neurodiversity advocates argued with a majority of people looking to cure autism and eventually each of them were successfully driven away, so this can't be all that made a difference.
Secondly, a major person on the other side of the argument, though she attacked me personally early on in the argument, used quite a lot of logical discussion and trying to clarify her understanding of my viewpoint as well. Not only did this make it much easier for her and I to come to an agreement in itself, but it also encouraged me to argue better myself. I admit that I did some personal attacks, though mainly towards people group members supported rather than group members themselves (eg, I said 'reputable DAN doctor' was an oxymoron), but in reaction to her model, I stopped doing that.
Lastly, I think I was different. Some of this took place during the lead-up to the ARM conference, when I was getting a really heavy dose of anti-autism stuff while simultaneously having a lot of personal support, and the bulk of it took place right afterwards, when I'd had a big shift in my viewpoint of parents of autistics as a result of my mother and the numerous activist mothers I met at the conference, as well as a shift in understanding myself and my own story (which I should probably blog about soon). That conference made me much more confident as well, and therefore less prone to defensiveness in reaction to that argument. I was able to confidently say 'no' to a request for proof of my diagnosis, and rather than feeling like my story was too atypical to teach anyone and would just show I had no right to talk about autism, I felt that my story illustrated something useful and significant.

More Listservs

Here is a continuation to my earlier post listing listservs I belong to.

AutAdvo
AutAdvo is an autism advocacy group. This is the group I generally go to when I need to reassure myself that I'm not alone in fighting for acceptance of diversity. Like many lists, people who disagree with the primary viewpoint are sometimes flamed, but one special thing about this list is that, unlike many other lists I'm on, someone usually steps in and says that though they don't agree with that person's viewpoint, flaming them is not a good thing to do. There is a general norm that encourages rational discussion instead of personal attacks.
AS-and-Proud-of-it
This list is similar to AutAdvo, although it appears to be younger. I haven't been that active in this list however.
AutismSpectrumTreehouse
This group differs from AutAdvo and AS-and-Proud-of-it mainly because it's specifically for those on the autistic spectrum, while the other two welcome parents and others as well.
AC-GLBT
AC stands for 'autistic and cousin' and GLBT stands for 'gay, lesbian, bisexual or transgender'. As the name suggests, this group is for autistics who are also different in sexual orientation or gender identity (or both). I joined it because I'm autistic and asexual.
ADD
ADD stands for attention deficit disorder (I don't like the word disorder). This is a fairly small group for ADD and learning differences. I was active in it awhile ago but kind of got sick of seeing constant uncritical acceptance of medication and not knowing how to respond.
Coffin-Lowry
Coffin Lowry Syndrome is an X-linked condition causing developmental delay and various physical difficulties, the most distinctive of which are drop attacks. This list is very inactive. I asked to join a more active list, from the Coffin Lowry Syndrome Foundation, but was rejected by a woman who seemed to think I was 'naive' for thinking kids like her son actually were valuable people.
Cri-Du-Chat Syndrome
Cri du chat is french for 'cat's cry'. This condition is caused by a 5p deletion and is characterized by developmental delay, a distinctive cry that resembles a kitten's cry, distinctive appearance and various other traits. This group isn't one of the more progressive groups, but they haven't been nasty to me either. I was thanked for giving advice to a woman whose daughter was upset about being different.
Iwill continue later.

Listservs

On the Angelman Syndrome listserv there was a request to post the list on people's blogs, so I decided to write a post about some of the listservs I belong to.
The Angelman Listserv
Angelman Syndrome is a condition caused by having no active copy of the UBE3A gene, usually due to 15q11q13 deletion. It is characterized by severe developmental delay, no speech, ataxia, seizures, hyperactivity, decreased sleep and frequent laughter and smiling. This list mostly consists of parents of Angelman Syndrome children, with a few exceptions (myself included). I stopped being really active in this list quite awhile ago when I was flamed for daring to say that maybe Angelman Syndrome kids wouldn't want a heaven where they're cured. A lot of the people acted like somehow they had personal knowledge of what heaven would be like eg "in heaven, my child will be able to speak." However, before then I also got some nice comments, especially when I answered questions about the genetics of Angelman Syndrome.
The Spina Bifida Listserv
Spina bifida is a condition in which part of the neural tube is underdeveloped so that some of the spine is poking out. I joined this list awhile ago but haven't been very active. In fact, I don't think I've posted yet, and I've only read a couple posts.
9TIPS
Trisomy 9, broadly defined, means there are three copies of part or all of chromosome 9. Most commonly it's either trisomy 9p or mosaic trisomy 9. This listserv is not really big, but it's fairly active. I occasionally post stuff, such as asking if apraxia of speech is common in trisomy 9p (it apparently is).
The Williams Syndrome listserv
Williams Syndrome is a condition caused by a 7q11 deletion in which individuals are mildly-moderately developmentally delayed, hypersocial and music-loving, with 'elfin' facial appearance and poor spatial and math skills. In general this list seems more aware that different isn't always bad than many others, possibly because Williams Syndrome has been recognized as being associated with musical talents such as perfect pitch.
The CDG listserv
CDG stands for 'congenital disorders of glycosylation'. These are a group of related metabolic conditions causing various features such as cerebellar hypoplasia, developmental delay, stroke-like episodes and a variety of health issues including liver problems and poor blood clotting. I don't think I've posted much to this list - mostly I just read other people's posts.
ACC-List
ACC stands for agenesis of the corpus callosum, meaning that the individual doesn't have the brain section that forms the primary connection between the hemispheres. Some people with ACC are severely delayed, others are apparently normal, but many are in between, with learning disabilities involving integrating different skills. I've noticed a lot of commonalities between autism and ACC, and like participating in this list partly because of that and partly because of the quirky sense of humor some of the members have.
Trisomy Listserv
Trisomy refers to having three copies of a chromosome or part of a chromosome. The trisomy listserv includes parents of children with a wide variety of conditions, with trisomy 13 and trisomy 18 the most common. I posted a blog entry awhile ago about one archived post from this list and when I posted the link to that entry on the list, I got some positive responses. A lot of these parents have been told their children have no chance of surviving and seen their children survive, partly because they did not decide that the kids would be better off dead. So in general this list is strongly anti-eugenics.
I will probablky finish this list later.