how to advocate for myself

Post Reply New Topic

Hi. I am totally blind, and have Asperger's Syndrome. I was diagnosed as an aspie in 2007, I think. I am staying at a place for the blind in South Carolina, for the purposes of learning independent living skills, and mobility, along with other things. I stay there during the week. Their eventual goal is to help you be as successful in life as you can. Some people I talk to on a day to day basis haven't had much experience with Asperger's Syndrome. I was born blind, so I'm used to dealing with questions about that. I'm discovering that trying to explain a neurological condition is a little different. I am not part of a support group, and am trying my best to advocate for myself. I'm just not fully sure where to begin. Also, I don't know what some mean when they speak of advocates. Are their advocates for those on the spectrum? Haha. I'm sure there are. I'm just not sure of who to contact, and how. I was wondering if anyone had any insight. I don't want Autism Speaks, though I'm sure they'd be more than willing to help me. Get back to me if you have any advice from personal experience, or just in general.

The autistic brain is born with more sensory receptors than normal, causing it to be constantly overloaded with incoming sensory stimuli, making social interactions difficult to mentally process and keep up with. It means the entire nervous system is continually overloaded and stressed out (thus the rocking, swaying, hand flapping 'stim' motions often seen among autistics). A state of low-grade anxiety that the body experiences even when the conscious mind is focused on other things.



If you're a member of Wrong Planet, you are now officially part of a support group. Welcome!

My experiences with trying to find advocates who will go to bat for you and speak for you when you can't speak for yourself has not been at all positive. I have not found any organizations who advocate for, or even recognize the existence of adults with autism. There are several who claim to advocate for children, but once you're old enough that you aren't "cute" anymore, you don't exist to them. Even organizations tasked with assisting the disabled in general have been little to no help, because they have no comprehension of what autism is, or what the needs of autistic individuals are, and bureaucrats aren't inclined to put much effort into learning new skills.

OTOH, at the risk of sounding heartlessly cynical, your blindness might give you a pathetic "Aww" quality that would make up for the fact that you aren't an adorable child. Advocate organizations like Autism Speaks are just money-generating machines and they love sympathy, it's a marketable product to them. Seriously, use the tools you've got, it's all about survival.

Thanks for getting back to me. Your insight is very appreciated. I know there are things like the autism self-advocacy network, but that's only in certain areas.