Autism Advocates

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I am interested in seeing a list of important autism advocates. These should be individuals that can be easily researched to see the various views and beliefs they foster---as that should be important not only to those of us with autism, but also to the advocate himself/herself. I realize there are some very famous individuals that speak on our behalf such as Temple Grandin. A search on her is likely to come back with over a million hits. But let's also try to come up with advocates that aren't necessarily as famous as Temple Grandin. Then we can conduct research on these individuals and see who we best think represents us individually---since we all have our own beliefs. But first, let's generate a list.

I don't really know any autism advocates. I think there needs to be many advocates. Professionals can be advocates but I'm thinking advocates with autism is better.

For once, I agree with you.

I am told most of the time I am right even though it's unpopular in "some" social circles. Seeking truth does not often sit well with belief.

ASAN (Autism Self Advocacy Network) http://www.autisticadvocacy.org/

Board members listed here: http://bit.ly/bSPqrZ

The folks that call compassion pity and insult the mothers and fathers of children with autism that ASAN will have to answer to those children when the time comes. I'd never have anything to do with ASAN because all they know about is how to create despondency in desperation instead of inspiration with passion. ASAN is pain in the side of respectful self-advocates that are embarrassed by their arrogant insults. Quit monopolizing independent thinkers in the media with the harmful leadership that makes us all look bad. Respect your own rights to lead by demanding ASAN become a democracy facilitation and allow for a diversity of empowered rights to speak by means of the central platform. Not just one enforced view but a respect for all in the implied name of the organization.

We need alternatives to the corporation ASAN so to empower a diversity of self-advocates. I think a really good media agenda for this would work. When I think about a self-advocacy advocacy network I think of one that has little central say but whose job it is to empower the individual members opinions, individuated pursuits and collectively by means of democratic like voting in model. Kind of like a donut shape whereas the central organizations job is simply facilitation and not dictation.

Nathan Young

Humboldt County, California

So far, as compiled from what has been given to me in the posts on this thread, are the following advocates:

Temple Grandin
advocates with autism
ASAN and its board members

I have to admit that advocacy isn't an area I'm that interested in. But since it is important to us on the autism spectrum, I thought it would be interesting to see a list of the important advocates out there.

The purpose of this list? To see as complete a list as possible for the important (whether good or bad) advocates. So even though you may not like a certain advocate, list them anyway. Then, perhaps we can organize them into a list from one extreme to the other. My hunch is that Autism Speaks would be on or close to one end, and ASAN on the other?

Since I am not into advocacy that much, I am going to stay out of any debate on it. But you all debate them as much as you want. Since we are the voices of autism, it will be interesting to see who likes who/what, and who doesn't.

The Temple Grandin is a great motivator and is balanced, reasonable and I don't think fits the autism pride classification. She is center in autism politics. I have very few disagreements with her and the ones I have disagreements with her on are not really that big of a deal. Like saying something along the lines of everyone has autism. She may be saying that so other people can relate but I am also tired of very high functioning advocates dominating advocacy. Temple Grandin to me is very high functioning which just means she is able to function within normalcy, does not need support and is self-sufficient.

Of the pride folks I see allot of emotional bullying if it can be called that. It's not popular to say the truth like you have a disability and need allot of help. ASAN to me is so very focused on a specific agenda and even if others with autism in that organization are of different opinions you don't see it in the PR. So for that reason as of far I am no where near satisfied with advocacy facilitations that reach the media.

In order to create enabling self-advocacy (or advocacy by individuals with autism) you got to empower without exclusion of ideas. It's likely we don't know of many advocates because they are not enabled by the autism community simply becuase the extremes are very protective. Folks in the middle are avoided, ignored and perhaps feared.

To be center in autism politics and awareness is much like in macro-politics. To enable this you got to be as bull headed as the extremes. You got to be prepared to knock it to them but be friends as well. That's what gains respect and enables true freedom of speech that is empowered not for just yourself but everyone else.

ASAN counts as just one advocate for the time being for me. It's a puppet organization where everyone seems to say the same thing and it's considered a "we" complex as if all of the same view point and ideals. It's a political group and not a true network of diverse idea.

I know I said I wasn't going to debate on this---but I just want to say:

Ci---this makes a lot of sense. And I do agree with this. I believe the middle does get left out---and that is unfortunate. Thank you for your insightful post.

I receive e-mails from a nearby "support group" for *parents of* autistic children, but I have yet to find any actual advocates for autistic adults here in northern Louisiana ... and I sure do need one.

Nathan,

I'm not sure exactly what history you have with ASAN, perhaps a difference in opinion about cures or prenatal testing, or something more personal, but ASAN's primary focus is in promoting the civil rights of autistics. We can argue about hurt feelings or real philosophical perspectives, wherever you're coming from, but our civil rights as a minority are necessary before we can get to any real help for our day to day issues.

My focus right now in Iowa is to help adult autistics live as productive, fulfilling, independent lives as possible. No one from the board has had a single word about how I do that.

Feel free to talk to me about your own experiences anytime. I'd like a chance to clear up misunderstandings.

As Leejosepho mentioned, I believe adults are often the ones left out when it comes to support. And now that you (Gitchel) mention the board not having a single word on how to help autistic adults, this seems to be an important issue that needs to be addressed today.

Where I live, we have plenty of support for autism---but it is support for the children. I don't know of any support groups for adults near me (except 2 hours or so away). I think that is why WrongPlanet is so popular---we tend to support each other---and we have some exciting debates as well. But with a spectrum as vast as autism, we are bound to have varying views of our autism.

Sorry if I added my post here since it was directed at Nathan. But I just wanted to add about the lack of adult autism support where I live.

Ok, that's what I get for trying to write and run out of the house to work at the same time.

I was actually trying to respond to the characterization of ASAN as an organization directed from a central office with a political agenda. While the national board represents our standing principles to the media, and acts on our behalf at the national level, they certainly do not employ or command us or send us talking points.

What I meant to convey above is that the board does not tell me how I must act on behalf of autistics in Iowa. Since the situation here is very different from most other states, it wouldn't make much sense for them to assume they have a universal formula.

On the other hand, I would find it difficult to extend myself past Iowa and into the national media, or into the US Congress. I need the national office to do that.

I have recently been appointed to the Iowa Autism Council, which is a state office created to make recommendations to the state on improving the lives of autistics of all ages. The Council has declared that their focus this year is on adult autistics and how the state can help them work and live as independent, productive citizens. since I agree with you that adult autistics have been largely neglected for many years, the Council seemed an excellent place for me to be right now.

Other than setting the standards for autistic participation in the public forum, and clarifying our perspective on the worth of autistic humans, ASAN had nothing to do with my choice to serve the Council, or with what I will do or say there. They will continue to promote autistics as full citizens and valuable human beings, and I will try to get work and homes and care for autistics in Iowa.

(Having said that, I am also trying to create ASAN support groups for autistics in Iowa. I need more volunteers in Iowa to help with that goal. If any Iowans reading this feel adventurous, please contact me by any means convenient.)

The Gitchel.

http://www.wrongplanet.net/forum33.html

Why won't you as a good advocate send that video on as a report from the Central Intelligent Autistics (C.I.A) agency to the big folks in wigs (Big Wigs) at ASAN. Tell them it is based on conflicts of interest and is analytical possabilics in result and its a imaginery potrayal. It's good to be creative you know such as with rhetoric, daily expression in life and all that sort of piss and vintager.

I will be less prone to being upset with ASAN should you do so and your recommending they watch it.

For the fun of it this campaign to get there attention is code named: Meow Mix.

I grew up in a military family it is just fun expression here.

Nathan,

I wasn't able to follow first link you posted, but I did take a look at the two videos in your sig. If the other is different from those two, can you send another link? Perhaps in a message, since I think our conversation is off-topic by now.

From what I did watch, it's clear you an I have different opinions on several points. Primarily, you seem to believe autism keeps you from being included in society. I believe that mainstream society and its reaction to what it considers a disability are what keeps you from being included. I think my point of view is more hopeful since most people can be educated out of their prejudices.

On the other hand, most 'cures' for genetics tend to end up pretty badly for the 'patient'.

Still, none of this changes what I have to do. Whether you accept that you are an autistic, or wait for a cure, the problem is the same: inclusion. We need to fight discrimination and marginalization. We need a chance to work to our potential and to be included in decisions about us. And we need to be allowed basic human rights and dignity.

To paraphrase the old line, I may not agree with your point of view on autism but I defend your right to express it as a fully-franchised participant in the discussion. And I happen to believe you can't participate properly without food in your belly, warm shelter and the freedom to come and go as you please.

I, for one, am way past discussing the relative worth of autistics or autism, and won't continue it here. I'm on to the part where disempowered autistic citizens become complete citizens, with all the powers and rights that that entails.

Definitely serving a specific agenda that conflicts with quality of life issues. Thanks for the reply. I enjoy this social challenge. I don't often fail these pursuits.