The Start of Something Great

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Hello all.

I have decided that it is finally time to start working on a long term goal that I am hoping will make life easier for those with psychological conditions, mainly Asperger's and Autism. Despite being a somewhat common condition, I have found that people only seem to know what Autism Spectrum Disorder is when they know someone who has it. I believe that if people understood how life with Autism Spectrum Disorder is like and how it feels to have ASD, we can reduce misunderstandings and maybe ease some of the awkwardness involved in everyday communication.

I cannot achieve such goals on my own. I am only one aspie. I can only reach so many people, and I only know so much about ASD, despite having Asperger's Syndrome myself. I feel I know how I might be able to reach people. But I need to know more about us, and I need to know that I am not alone in this.

It has also been brought to my attention that possibly the most well known "advocates" for ASD, Autism Speaks, are guilty of actually worsening the stigmas and stereotypes against us. So I am calling out to all of you. If you wish to help spread the truth about us, to reduce the stigmas, now is as good of a time as any to start.

There are a few places I had in mind where I can start, but I am open to suggestions. I also need the support of experts who actively study Autism Spectrum Disorder to provide professional opinions and facts about ASD once things start picking up. I will not lie, this goal is long term, and it is unlikely that any effort I make will have a visible effect for a few years. I have a general plan, but I need to know if I will have the support needed to make this bigger in the future.

autism speaks are pseudo advocates, they think theyre speaking for us but theyre just speaking for themselves.

what about making a wiki-purely on ASD and anything associated?

am willing to help this goal in what ever way possible, am a autism & intelectual disability activist IRL,am a service user of a social services intelectual disability team and also work with them on activism so
shoud be able to get any needed profesional information off them on autism.

Asperger's and autism are not psychological conditions. They're a neurological difference. If you don't get that much straight it's a bad omen for your project.



Problem is that it's not the same for everyone on the spectrum. That makes it so hard for others to understand - and for us to explain.



Care to share?



You're not.



Agree.



Already did.



Professionals tend to follow in the same lines as Autism Speaks. Surely those of us living with autism are the true "experts". There's just little effort to bring our varied experiences together in one place.



Depends on your plan.

That's why I need help. I don't want to mess this up. I have a long way to go, and I have a lot of studying to do. I called it a "psychological condition" only because I knew it is something that effects the brain that is different from what society considers normal. I did not mean for it to be offensive.



Yep. I know. I have Asperger's Syndrome, so I know how hard it is to describe. I know this will not be easy.



Gladly. Though I don't have everything figured out yet, I do have ideas as to how to reach the public. For example, if we/I/anyone started a youtube channel dedicated to helping spread awareness of ASD, It would only have a limited audience. Only people who are looking for the information would find it. However, if the same youtube channel also put up videos of different, more popular subjects, it raises the possibility that, on looking for other things by the same people, they would see and watch the Autism/Asperger's awareness videos. The videos themselves would have to be eye catching and entertaining, otherwise they will not have a lasting impact. The big thing to remember is who the audience is; the average individual. Whatever is done has to appeal to as many people as possible, and it has to actively grab their attention to avoid being lost in the jumble of useless information that people take in every day.



Good! How so?



good point, though what I was thinking was along the lines of people who have ASD who also study it actively. I know of at least one person who might fit the qualifications.



I was thinking of starting small with the resources I have, gaining the support of the Asperger's/Autistic community before gradually moving up, creating a Youtube account, possibly a Q&A website as well. I also like KingdomOfRats' idea of an Autism Spectrum Disorder wiki to spread the truth. eventually, I would like to hold public awareness events and, if things go well and gets big enough, we might be able to take it to the media to reach a huge amount of people. Again, this will take years, and will require dedication. But it is possible to do, and if done right, can get our voices heard.

Wouldn't it be easier to join a group that already does this? All the things you propose seem to exist already. As you say, the problem is that only those people may find them who are actively looking for them. Not sure if cluttering their brains further with videos that are not autism-related will change that. Also, autism isn't easy to explain, as we agreed, so videos about autism are unlikely to be entertaining. If you can come up with entertaining videos that spread the right message about autism that would be great. But what would a viral pro-autism video look like?

It would probably be easier to join another group, but they don't seem to be effective or active enough to counteract society's views on Asperger's and Autism. The videos would be organized, I don't think they would clutter anything. As for being entertaining, you would be surprised at what the correct tone of voice, editing, and word choice will do to anything. even satirically insulting or criticizing the things that create the stigmas, such as the Autism Speaks commercials, would help, and be easy to watch. I also don't expect these videos to go viral. I hope that enough people see enough videos to make a difference.

I just think you're contradicting yourself here. You want to "be effective or active enough to counteract society's views on Asperger's and Autism", but not go viral with your videos. Just a few people watching them will not change society's views as a whole.

Do you have experience making videos that people want to watch? How many views did your most successful video get?

I like that idea. We would need help setting it up, but that is a good idea.



Thank you. That will be a huge help. as I told Aspendos, this will take a while. I only just proposed this last night, but when things pick up, I expect that will be of significant help.

even news networks don't have many viral videos of their own. Youtube was just an example, not the only thing I have planned. it is unrealistic to believe that a pro-Autism channel will produce many viral videos. It just isn't something people actively talk about. That is just a place to start. The more active, significant things like public awareness events would come later and hopefully have a greater impact.

its not as difficult as might think with the wiki,there are a number of free website hosts that install the wiki script at the push of a button so theres no technical knowledge needed,have done it before just to see what it was like.

will have a root around today and come back with a good free host.

will email the ID team with a request for info on all ASDs;based on both ICD and DSM,and also information on associated/ comorbid disabilities.
theyre very useful for this kind of thing though- they helped to set up a social network for people with ID last year,even got access to a fund to make the site more accessible.

These existing organizations have not done much. A new approach or just another person using similar approaches more effectively is something worthwhile trying.

The problem with a real wiki is that by definition anyone can change it. And since there's no agreement on just about anything to do with autism ... this wiki likely would end up a battle zone and be rather unreliable content-wise.



Dude, you're not a news network. No one knows you. How are people going to find your Youtube channel?

Public awareness events rarely have much impact, unless you can multiply them the way Autism Speaks does. I firmly believe that autistic self-advocates will need to use the Internet to create awareness. Not least because many of us wouldn't be comfortable participating in (let alone organizing) public events.

We need new ideas how we can use the Internet to our advantage.

Here's an idea: Since the problem is that most people don't know anyone who is autistic, how about starting a Youtube channel just for autistic self-advocates to present themselves and talk about their experiences. This could include (from the start) a (semi-)public campaign to bring together 10,000 such videos of self-advocates at all levels of the spectrum. It would also not be necessary that people talk in the videos (unless they want to), since it's possible to have videos that are made up of or include text - or people might think of other creative ways of presenting themselves and educating non-autistics about autism. Maybe instead of a Youtube channel (or in addition) this could be a website. By asking people to make videos of themselves we might motivate new people to become active in autistic self-advocacy. Such a channel or website would certainly showcase the wide variety of people on the spectrum.

I like it. I was already thinking of making a website at some point. Any Idea as to how to attract viewers?

It's likely easier to attract viewers on Youtube than on one's own website. Of course it's also possible to have a website, but embed videos safe (and also available) on Youtube. Storing 10,000 videos on a website is probably quite costly, too. But ultimately, after a certain stock (at least 100 such videos) are available the further growth would have to come from a public campaign via social media and possibly traditional media. The latter may well be interested in reporting on an attempt to bring together "10,000 Voices of Autism" (or whatever it might be called). If not as a political story, than as a human interest story. It's however important to only approach them once there's enough videos available for them to watch and report on (at least 100) so that they get an impression of what it might look like with 10,000. There's also the possibility to include autistic self-advocates (and media) from all over the world, and in various languages.

Ok, we would have to create a channel to post the videos on, and once that is done, we need to bring it to the attention of more people, not just the three on this thread. Youtube only seems to let me log on with my Gmail account. We could create a new Google account for this.