I want to start an advocacy group for autism awareness and rights

[Captain Jigglypuff]

The recent death of health care advocate Ady Barkan has made me want to start an advocacy group/organization to raise awareness for autism and Asperger’s and rights and to show that we are not some burden on society or the weird annoying outcasts that the media often portrays us to be. Thing is I don’t know how or where to start and I also need more like minded people to help me get started. Any ideas of how I can begin the process? I have always wanted to do good for people and maybe change the world in a small but positive way. I feel like this might be my calling and I don’t want to ignore it.

 

[tree]

https://en.wikipedia.org/wiki/Ady_Barkan

 

[VictorR]

Here's some things to consider:

1. Define your purpose
What are you trying to accomplish? Are there similar / related groups (in the same or different field) that may serve as a model?

2. Scope
Are you focused on a city/county, a broader geographical scope, perhaps a country, or even a continent or internationally?
Note that this can change over time, or that an organization nay have a broader scope though focused on a smaller area.

3. Methods
How will your work / advocacy be done?
Traditional media, social media / website, political campaigns (letter writing, visiting/lobbying politicans), advertising, etc.

4. Organization
How will your group be organized / led?
How will decisions be made, especially when the group grows?
Do you intend to eventually incorporate or register as a non-profit (there are certain benefits but also drawbacks), or do you intend to stay unincorporated?

5. Potential members and allies
Who are the potential members and allies for your proposed group?
Do you have any restrictions or requirements for membership, or potentially have different types of membership?

6. Funding
What sources of funds dies your group intend to draw from to support its activities?

 

[Captain Jigglypuff]

Here's some things to consider:

1. Define your purpose
What are you trying to accomplish? Are there similar / related groups (in the same or different field) that may serve as a model?

2. Scope
Are you focused on a city/county, a broader geographical scope, perhaps a country, or even a continent or internationally?
Note that this can change over time, or that an organization nay have a broader scope though focused on a smaller area.

3. Methods
How will your work / advocacy be done?
Traditional media, social media / website, political campaigns (letter writing, visiting/lobbying politicans), advertising, etc.

4. Organization
How will your group be organized / led?
How will decisions be made, especially when the group grows?
Do you intend to eventually incorporate or register as a non-profit (there are certain benefits but also drawbacks), or do you intend to stay unincorporated?

5. Potential members and allies
Who are the potential members and allies for your proposed group?
Do you have any restrictions or requirements for membership, or potentially have different types of membership?

6. Funding
What sources of funds dies your group intend to draw from to support its activities?

I’m not sure about any of that. I am a member of my local PFLAG and they do stuff with other organizations. Do you think they could help me? I’m thinking of maybe getting this to start off as an online movement of sorts and see what happens from there. I mainly want to counter Autism Speaks and show that many of those on the spectrum don’t agree with or support them and why we don’t want a “cure.” I also want to show the world that it is possible for us to have relatively normal lives and hold down jobs and even have our own families.

 

[tazz]

You are already starting to write your goals right here:

show... why we don’t want a “cure.

show the world that it is possible for us to have relatively normal lives and hold down jobs and even have our own families

It might be useful to write a list like this before you speak to anyone. If it's a short list, elaborate on each point a little.

It will help you to articulate what you want to achieve.

I'm a firm believer in talking to other groups and people who can offer advice and mentorship. I'd suggest you talk to as many people as possible. It'll help you fine-tune your goals and figure out how to get started. You don't have to take everyone's advice. But talk to and listen to as many people as possible.

 

[tazz]

I wouldn't pitch it as specifically trying to counter another org (autism speaks in this case). Sure, think about what they are doing wrong if it helps you to figure out what you want to do. But when you're talking to people, focus on what you want to achieve.

By the way - I'm on the Board of a small children's non-profit org and was a financial director for an educational non-profit for a while. I've also started non-profit enterprises and projects. I am by no means the best or most accomplished in the non-profit/campaigning arena, but I have some experience and I'm happy to help.

 

[Captain Jigglypuff]

You are already starting to write your goals right here:



It might be useful to write a list like this before you speak to anyone. If it's a short list, elaborate on each point a little.

It will help you to articulate what you want to achieve.

I'm a firm believer in talking to other groups and people who can offer advice and mentorship. I'd suggest you talk to as many people as possible. It'll help you fine-tune your goals and figure out how to get started. You don't have to take everyone's advice. But talk to and listen to as many people as possible.

Well I know that two of my local PFLAG leaders did work in a mental hospital in the past so I do know they would have some knowledge to help me and even support me given they’ve seen some things working at the hospital. They do have a lot of connections. And what I meant by counter wasn’t that I want to publicly expose their shady actions but rather be a counterpoint argument to what they promote. Maybe say that we don’t necessarily agree with them but we tolerate their existence and attempt to make autism a more recognized disorder.

 

[VictorR]

I wouldn't pitch it as specifically trying to counter another org (autism speaks in this case). Sure, think about what they are doing wrong if it helps you to figure out what you want to do. But when you're talking to people, focus on what you want to achieve.

By the way - I'm on the Board of a small children's non-profit org and was a financial director for an educational non-profit for a while. I've also started non-profit enterprises and projects. I am by no means the best or most accomplished in the non-profit/campaigning arena, but I have some experience and I'm happy to help.

Agreed - it's always best to frame things positively and on how your group can make society a better place.

My personal take is that whole we can't be friends with everyone, that we should try not to alienate or antagonize anyone and unnecessarily create animosity.

As with Tazz, I also have experience in small group leadership and am open to sharing general ideas and thoughts.

 

[tazz]

what I meant by counter wasn’t that I want to publicly expose their shady actions but rather be a counterpoint argument to what they promote. Maybe say that we don’t necessarily agree with them but we tolerate their existence and attempt to make autism a more recognized disorder.

ok understood. But still, my feeling is don't even mention them to anyone else. For example, even saying publicly that you don't agree with them sorta validates their existence. If I say "Apple's computers suck, mine are much better", what's the first thing that someone is going to do after they've taken a look at my stuff... flip over to Apple of course to see what's going on there! I wouldn't give them any publicity on my dime.

 

[tazz]

Anyhow - I agree there's a need for some sort of advocacy group like you're describing. Even in the short time that I've been diagnosed, I've been surprised by people's reactions. I wouldn't be so surprised or concerned if their response was "I don't know what autism is, tell me more." but autism has penetrated the media to a point where lots of people have picked up something about it, and often what they've picked up is out of context or completely inaccurate - either way it's misleading.

 

[Captain Jigglypuff]

Anyhow - I agree there's a need for some sort of advocacy group like you're describing. Even in the short time that I've been diagnosed, I've been surprised by people's reactions. I wouldn't be so surprised or concerned if their response was "I don't know what autism is, tell me more." but autism has penetrated the media to a point where lots of people have picked up something about it, and often what they've picked up is out of context or completely inaccurate - either way it's misleading.

I want to educate the public about the misleading info they have been given and how vaccines don’t cause autism and also how ableism is a major issue those on the spectrum face on a daily basis and how some seemingly harmless comment such as “You don’t look autistic” can be actually harmful. I also want to educate people about how autistic people are more likely to become victims of all kinds of abuse and how sometimes the abuse is well hidden underneath layers of passive aggressive behavior of the abuser and the abuser making up stories about the victim.

 

[Tom]

Just a thought. When you say you want to educate the public, you have to ask yourself how educated you are on autism and the issues. I would think to gain any traction you are going to have to be very well informed.

 

[Captain Jigglypuff]

Just a thought. When you say you want to educate the public, you have to ask yourself how educated you are on autism and the issues. I would think to gain any traction you are going to have to be very well informed.

Well I’ll be mostly talking from experience of how I was treated by others and as if I was either a total idiot that didn’t know the difference between someone being angry with me from someone who said something that meant nothing and as a victim of abuse who observed very carefully how my abuser chose her words to make it seem like she was some self martyr caregiver and that I was so much trouble to take care of and that she couldn’t ever take a break from me which was a complete lie. I also want others on the spectrum to share the ways others have treated them just because of their diagnosis. We do need to stop the ableism the media has put out there against autism and the way we keep being portrayed as some loud obnoxious kids that causes problems for everyone else and no one wants to be around. I want to start a movement to end this typecasting and tell everyone how this is very harmful to us and our lives.

 

[mysterionz]

https://en.wikipedia.org/wiki/Ady_Barkan

He passed due to ALS very sad day

 

[VictorR]

Well I’ll be mostly talking from experience of how I was treated by others and as if I was either a total idiot that didn’t know the difference between someone being angry with me from someone who said something that meant nothing and as a victim of abuse who observed very carefully how my abuser chose her words to make it seem like she was some self martyr caregiver and that I was so much trouble to take care of and that she couldn’t ever take a break from me which was a complete lie. I also want others on the spectrum to share the ways others have treated them just because of their diagnosis. We do need to stop the ableism the media has put out there against autism and the way we keep being portrayed as some loud obnoxious kids that causes problems for everyone else and no one wants to be around. I want to start a movement to end this typecasting and tell everyone how this is very harmful to us and our lives.

So how would what you're doing differ from those like

https://a4aontario.com/
(Their resources and papers sections have some excellent content, by the way)

My question is basically to prompt you to consider how your organization may be different, or perhaps if you may better able to accomplish your goals by joining and assisting an existing organization.

 

[Captain Jigglypuff]

So how would what you're doing differ from those like

https://a4aontario.com/
(Their resources and papers sections have some excellent content, by the way)

My question is basically to prompt you to consider how your organization may be different, or perhaps if you may better able to accomplish your goals by joining and assisting an existing organization.

I didn’t know that something similar to what I wanted to do had existed due to me being in the US. I would like to form maybe a branch or something similar to it in my area. I just sent the organization that they are a branch of an email stating an interest in setting up my own local branch.

 

[TBRS1]

If you get something going, or want to discuss ideas, feel free to contact me. I have similar thoughts.

So far, the best I've come up with is a blog, where I describe "life from my point of view." I've read many of these, and have found them to be uber-helpful - not feeling like I'm alone is very much super good.

Maybe a blog, with invited guest writers to share their experiences?

 

[Misty Avich]

I want a cure.