Public Perception of Asperger's, and a call for activism

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I have been very offended by the recent "press" that such groups as Autism Speaks and CAN have been getting recently.I think there needs to balance in information and options offered to the media and the public.One of the first points I would like to see clarified is......the new "statistics" of people with Autism.

Do you know what the actual breakdown in percentages are of that number?How many are LFA,HFA,Aspergers?How many are children and how many adults?We will never know how many adults have AS because many have learned to function well enough to survive(if not all thrive,meaning myself).Many will never have access to resources to get a DX or have a fear of being labeled when doing so does not offer benefits but possible punitive consequences,(when seeking emploment,healthcare insurence,etc).There are many adults who were given incorrect DX(because there was no knowledge of AS before 93)and have co-morbids created by living with AS without adequate support or understanding.Many have been punished for their AS traits by being incorrectly medicated,"theripized" and having their sanity questioned through lack of professional knowledge of ...Executive function problems,CAPD,Sensory sensitivities.


I work a full time job and sleep a lot because I work overnights and am constantly jet-lagged.....but I am very interested in being involved in educating people about AS.I have high function days and low functioning days but I care about this issue and
would be willing to volunter time and energy to this issue.Please feel free to contact me.I would love to see something organized by the next April(Autism awareness)month.

I have recently contacted Rosie O'donnell,who says she is going to be doing awareness of autism soon and asked if she would allow some "alternative perspectives" to Autism Speaks and CAN agenda...but havent(and probably wont)get a response from her.I think she would be "On our side" on this issue,if she was given information about it,but....she is so busy and already has many "causes"..........Maybe ELLEN,doesnt she still have a talk show?(I dont watch daytime TV)

Anyway.I think it is a good idea and would be willing to help out in anyway I can.

I think that a quasi organised group allowing ASD people to express their own views about their experiences is something which would be welcomed by many who have ASD.

It seems wise to counteract the emotional arguements against ASD (which often come from more parent-oriented groups) with those of the ASD community itsself. While the general mass media seems increasingly engrossed in "human stories" we have to be able to form groups/adapt to ways of plugging into these types of media (which are naturally difficult for us).

There also seems a rise in lazy journalism, and a "one-stop shop" for a journalist to access the AS community, would aid us all, in that it would paint a balanced picture. Rather than someone taking a random or difficult thread on WP, and using the contents to skew a story, "because it makes a story"

I'm not sure that we need "activism" I don't think an "Aut-rage" version of the gay community's "Outrage" (-using shock tactics and outings) would do the ASD community any service. Rather we need a group who are able to act as advocates for the ASD community in our relationship with the media, and in turn, the general public.

I already do this. I did a presentation on Aspergers last week. Some others on here also do the same as I know them.

I dislike the bad press we get that every Aspie is an idiot that cannot be self supporting and does not have friends. Some of us are badly autisticm but we still managed to make it enough to work and even have a bit of social life.

The bad press Aspergers got because of Cho is not helpful. Few of us are dangerous or really want to kill people. Yet this is what people are taking away from the story.

We do need to speak up and speak louder than Autism Speaks because they are creating hatred towards autistics. Even some of their members have spoken up that they want to kill their child.

I want to help but I feel tiny among all of these big ideas. Working with the public is not a strong point for me. I am terrible at getting my ideas and opinions out, I never seem to be able to word anything right or convince anyone. I can think of many other reasons that I wouldn't be of any use to an organization like this, but I see the necessity of it. I had such a hard time finding out good information on asperger's when I was trying to find out if I had it or not. I've had a very difficult time finding professionals who understand who can tell me for sure if I have it or not, and finding those who can actually offer some help for the difficulties I face in life. After a year, I have still made little progress. It would be great if an organization like this would also act as a guiding point for those who think they have asperger's to find the information and services they need, and to get a better understanding of the condition themselves. If I can get past my own fear of my own limitations, I would like to help make this organization a reality.

Hi Dan,

there's certainly a lot of merit in your idea, but to make this work requires precisely those skills that we Aspies are lacking. "Organized Aspies communicating to the public" feels a bit like "round cubes rolling"... On the other hand, we also wouldn't want non-Aspies to be our "mouthpieces". What manner of organization do you think would be agreeable with us, and how would we go about the communication issue? I'm doing my own little thing in this respect by doing very well in school and telling anybody who wants to know (and probably some people who don't give a hoot) that I can do that because I'm autistic and not "in spite of" it, so as to create a positive image in their minds. But I never even talk with two people at the same time, let alone to a "public"... it seems really hard to imagine that Aspies would do that.

Given that one of the bases of AS is social anxiety...it would be a challenge....but there are people here who have a gift with written words,good at art or music or creating computer information....so,all is not lost.There is a small minority of people who have spoken in public and Alex and Squire have both taken the plunge into mass media .I wouldnt have any problem with the idea of hiring an NT PR person....they are paid to represent the groups message,not their own beliefs.There are also some NT parents here who are very supportive to the own kids and the community.....we should use the resources we have and "hire" those we do not,even NT's do this all the time.I do think the most helpful thing would be finding a spokesperson that is "popular" with the masses and not ashamed of their AS.We have certainly made enough threads about...."Is this(fill in famous person)AS?"


I hope this will become someones "obsession"....we totally 'ROCK' at those.....

First of all, great idea.

What modes do you suggest for this communication? Who's your target audience? And how do we reach them and get them to take us seriously without benefit of celebrity/politician endorsement?

Think about the "Rain Man" phenomenon: it took a mainstream fictionalized account of an autie's life to bring autism to public awareness, and it succeeded only because the general public is fascinated (in a short-attention span way) with anyone who looks so "normal", but behaves so "abnormally", and yet they can relate to him. It's a pity that "Mozart and the Whale" didn't get that kind of widespread interest.

Actually sounds fun to me oddly, lol, despite the social part of it, and kind of sparks a certain interest. I don't work, so I couldn't do a ton, but I used to LOVE making magazine type things in those cheap little 3 prong folder things and asking if I could just lay them on the tables in hairdressing rooms and such. They were usually just general crap, whatever I was into at the moment, and views on all of it, and I was pretty surprised by the response. I didn't have much input from others (being I only had like, one friend to help with ideas at the moment, rofl), but just loved getting some stuff out there. Views on normal social things, plusses and minuses to it, doing small interviews (via e-mail) with bands and such, plugging in friends' poetry and drawings into it, etc. It was a LOT of fun while it lasted-I finally burnt out when I was at a complete loss with the idea and my friend had lost interest in actually creating it. But it was kind of nice, I laid it out there with the other magazines, people could read it if they wanted to, etc... you'd be surprised how many people will pick something up like that and actually bother to respond-just regular computer paper, poorly formatted with the info, black and white images for everything because I didn't have colored ink, and I got probably over 100 responses by the end of the short-lived magazine (it only lasted like, 4 months of scraping together an "issue" of it, which was only 4 issues of random stuff, not focusing on anything at all). Lol, I dunno where I'm going with this, I guess I'm just saying if this is an idea of how anyone would want to go about it, I would sure love to help or get something small started for that matter if anyone wanted to work on a fun little side project.