Sunday, December 17, 2006

More Listservs

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

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.
This list is similar to AutAdvo, although it appears to be younger. I haven't been that active in this list however.
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 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 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 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.

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Anonymous Anonymous said...

This comment has been removed by a blog administrator.

2:34 PM  
Blogger Unknown said...

The Coffin-Lowry Online Support group is limited to parents, caregivers, educators and health care professionals who have direct contact with individuals who have Coffin-Lowry syndrome. This restriction is necessary to protect the privacy of the members, and tt is because I value these people as individuals that I respect their wishes and the wishes of their families.

11:24 AM  
Blogger shashank said...

Here is a link to more information about the genetics of Coffin Lowry Syndrome that was prepared by our genetic counselor and which has links to some useful resources for those dealing with this condition: There is also a phone number listed if you need to speak to a genetic counselor by phone. I hope it helps. Thanks, AccessDNA

10:36 PM  

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