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

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I haven't posted here in a long while since I handed the site over to Alex. I regret kind of watching from the sidelines as I've pursued other things and started college. A lot has changed in the past couple years. The site's grown a ton, and Asperger's has gained much more public awareness.

Problems in Public Perception
It seems like more of the NTs I speak to today have heard about AS, which in some ways is a good thing. But at the same time, from speaking to them, I'm not so certain they really understand.

There are the folks who know nothing about it -- you have to give them the whole spiel, rattle off the "symptoms", and somehow try to get in a line about it not really being a disability and all. Then there are those who *have* heard about it, but know little. But there's also a segment of people who aren't uninformed, but completely misinformed. As Will Rogers once said "It's not what we don't know that hurts, it's what we know that ain't so."

A few misconceptions
What do some people think of AS? Here are a few popular misconceptions, slightly exaggerated:

1. Rainman -- Asperger's is a form of autism that's completely debilitating for those who have it. Only through proper treatment and care can they have any chance at normal lives.

2. Geek - People with Asperger's are totally awesome geeks, which is why there are so many of them in Silicon Valley. No worries!

3. BS - Asperger's is in the same category as ADHD and Restless Leg Syndrome. It has no legitimacy and is merely the product of an overmedicated society.

4. Creep - People with Asperger's are creeps, stalkers, and perverts.

How do people find out about AS?

Put yourself in the shoes of someone casually interested, or someone like a journalist who needs to know more for a story. The first thing they'll probably see is the DSM-IV definition which, while accurate, fails to communicate much about our disorder. They'll see some sites like ours, read a few posts. And from that, they'll pretty much base their opinion.

But if only we were so lucky to only have the casually interested to deal with. A lot of folks only hear about it by chance. One news story. One video segment. One forum post.

We want people to have an accurate view of Asperger's, but far, far more importantly, to fully understand the idea of neurodiversity. This is a nuanced and complex concept that's exceedingly difficult to get across. The mental schema that many have is one opposite to that which we to get across. They see society not as a gradiated spectrum, but a series of boxes in which people fit. The at-times dehumanizing language of science and medicine often reinforces this.

What to do?
I've been thinking a lot in the past few years about this problem of perception.

After giving a few talks to groups that invited me, I concluded a while back that I ought to compile a really nice, slick, concise presentation that I could more readily give to audiences, rather than fumbling over index cards. An "Inconvenient Truth" for Asperger's and neurodiversity. Another idea that came up would be to make a purely informational website that talked about these ideas in a series of tightly written articles, try to get it coming up in search results.

But a couple weeks ago, I had a better idea.

One plan

What we need to do is create a legit non-profit organization which would do the following:

1. Raise tolerance and awareness of AS and other spectrum disorders, clearly communicating the *entire* picture. Not some poorly-written paragraph, not a rehash of the DSM-IV, not some random rants from extremists.

2. Articulate a realistic and moderate set of views on the topics of neurodiversity on a societal level.

3. Respond to unfavorable media coverage of AS and spectrum disorders in a timely and thoughtful manner.

4. Organize a network of folks in different locations to raise awareness and, in doing so:
i. make available a great set of materials on the topic in every medium
(powerpoints, brochures, posters, talking points).

ii. provide resources for volunteers to improve communication skills

iii. provide the necessary funds and infrastructure to make any events or
presentations heard of and attended, and of course, promote the organization itself.

As you can tell, I have a bit of an emphasis on marketing and such. A lot of the time that sort of thing can get pretty silly, it often rubs me the wrong way. But in our case, it's necessary! We've got plenty of substance, we just need a bit of style. Good design, strong writing, stories, pictures, movies. Anything and everything to get our views understood.

This is pretty ambitious, and perhaps the idea isn't fully-formed, but after a couple years, this is the best I've come up with.

I'm not completely committed to the idea yet, but I would love to hear from you guys what you think, if you'd be potentially interested in getting involved, and what needs to change to make this work. Just post here, or we can talk about this by email/im/phone, I want to hear what you think.

Thanks!

Last edited by Nuttdan on 30 Apr 2007, 4:13 am, edited 6 times in total.

Thats a lot of typing....

Well welcome back to the site.

And yes, I hate those facts that people make up, it annoys me so much!

Welcome back to WP!

And I am in agreement with the two of you.

Tim

Personally, I dislike and distrust activism. It can't become political.

The movie "Inconvenient truth" is, ostensibly, a film about a change that needs to be made, a right that needs to be wronged, that sort of thing. I would think something about Asperger's wouldn't be taking that stance.

Last edited by Butcher on 30 Apr 2007, 3:40 am, edited 1 time in total.

I agree. This is why I haven't taken much of a shine to groups like Aspies for Freedom. They can come off as really extreme and political, even when they don't mean to.



Right. The mention to Inconvenient Truth I made wasn't comparing the issue of global warming to ours, but how Gore took an issue that was already being discussed and managed to clarify his side's stances on the issues, package it up, and get it out to people on a large scale.

We wouldn't want to come off as politically-charged, as victims, or extremists, if that's what you're thinking. But we do certainly want to be active in getting a message out.

Hi Nuttdan,

I think that's a really good idea. I am based in the UK and am on the executive committee of an organisation that helps people in the local area who have AS and HFA, and also the parents and carers of those with ASDs. We also do some campaigning, more in the local area health authority to make them provide better (or at least some!) provision for people with ASDs.

I have also recently become involved with campaigning on my own, as an individual. I was in parliament last week attending a discussion about the proposed mental health bill and I also met up with some people from the campaigns department of the National Autistic Society and talked about being part of a consultation group containing adults with ASDs who will report their findings to MPs or research bodies etc. - althogh this group is just a proposed idea at the moment, so nothing is yet concrete.

Anyway, I just wanted to let you know that I think this is a really good idea and whilst I agree that it shouldn't get too political, I think that some degree of political involvement will eventually be necessary if we want to get out point across and if we want to make some real changes to provision for and social attitiudes towards those with ASDs.

As mentioned above, I live in the UK, and I don't know where you are based, so I may well not be of any use or relevance to you. I just wanted to show my support for your idea.

hear hear

Rid the lie.

Nuttdan,

Yeah, it IS odd! Well all know 3 and 4 are false. 1? Well, his brain is not like ANYBODY'S here! Is there even another that has like one big brain?

I'm kind of in the #2 camp(I've been called a geek and am good with computers/science), but many here aren't.

You have a great idea, but WHO should run it, and how?

BTW You're still around boston, right? I am also! I wanted to meet others with AS anyway, and alex mentioned you. This would be another thing we could talk about. HEY, maybe others can come and we can have a little meeting!

Steve

One of the things that scared me going here after Dx was some misconceptions I heard about AS:

1. Fairly incoherent

2. Doesn't understand comedy/jokes

3. Very narrow interests

4. Insanely bright

They are all wrong. Most people here have a large vocabulary and can form sentences. These are some of the funniest people I've met. They are actually quite good at making jokes and can be quite abstract too. Narrow interest is just wrong. Obsessions can be quite broad. Also many people like me, although we have obsessions are basically fascinated by everything. I actually go a far to say that I don't understand NT narrow 'career' choices. I like the renaissance approach. There are some people who are a bit slow like me

I would really like to see some advocacy, in the way of explaining to people why Aspies..or people in general, may not want to sit next to children. It seems parents these days, insist that everyone must want to be around their darling little angel, and if they don't they are mean! It's like parents think that it's ok for them to think on the same level of intelligence, as their own child.

It'd be nice if people realized, some people have auditory problems, like I do. That sudden loud noises, like a child shreiking can be very disconcerting to us, and that we feel our only option is to glare at the child or the parents, because they refuse to listen to anyone who would dare not be completely accepting of their lovie-kins. I'm tired of the assumption that because I don't have kids, I know nothing about raising them. I do know that there was a time when it was considered reasonable, for kids to behave in resturants. Apperantly now it's blasphemy to suggest so.

Family resturant doesn't equate to a Chuck E Cheese, the resturant owners could care less as long as they are being paid. When I say I don't want to sit by children, it means I don't want to sit by children because I care about them. If I didn't care, I'd sit there and keep yelling at the kid to shut up. It's bad enough the child has to deal with incompetant parents, who don't see how they are putting their child's safety in peril by letting them act like a brat.

So in general what I'm saying is that parents should be taught, that if someone doesn't want to sit next to their kid, it might be about other things than them being a meany-poo. That people actually have different tolerance levels for small children, and that maybe if they stepped outside the baby bubble once in awhile, they would realize it BENIFITS THEM that people are asking them to put their kids in child only areas of resturants perhaps. Or if someone is telling them to sit somewhere else, then sit somewhere else instead of pitching a fit about it.

I feel powerless because it seems when I talk to these parents, all they see is a kid because Aspies tend to look younger than their age. So they talk down to me. It's like, how am I supposed to convey my issues to them if they'll either assume I'm beneath them, because I didn't mate and give birth. Or if I explain my problems, they'll act like I'm some poor helpless ret*d, and then I'll have to explain to them that I'm not..just because they have an infant, doesn't give them the right to infantilize others that don't make way for baby.

Yup, me too. But sometimes folks with the #2 misconception will just toss AS around lightly, forgetting that it is a medical condition and many of us do have genuine difficulties related to it, especially in school. I'd certainly prefer being perceived as a #2 to the others, though .



I was thinking I'd go ahead and found this thing if it made sense, but I'm not sure how it would be run. I read a little about the relevant law. It might be good to have a small board of directors. It might also make sense to somehow have registered supporters/constituents/representees, even though we'd be staying as far from political as possible.

I've realized activism isn't quite the word I'm going for here. Advocacy is a better word -- advocacy with spunk.



Yup! I'm working and living in Somerville this summer, then going back to Northeastern in the fall. I've tried to go to two aspie meetups that have failed -- check out the event listings on aane.org. One was at the museum of science and I either missed the group or it snowed and nobody came, and the other was at a billiards place that ended up being 21+. There's a get-together at the No Name Restaurant later this month I might try to make.

There are aparently a few other folks with AS at my school. I was thinking we ought to organize an Ice Cream Antisocial. (just kidding)

Last edited by Nuttdan on 30 Apr 2007, 8:23 am, edited 3 times in total.

Dan, I read your post and thought it was well-thought out. Yes something like this needs to be done but the tricky part is how to keep it from getting political, who to help get it off the ground so to speak and all. It can't fully be done the way AFF does it because we don't want to get too extremist and all but we also don't want to be too passive either.

I'll admit I've came across many people within the "NT" world which sometimes have a fairly good grasping of What Aspergers is as well, the same can be said there has been persons that tend to look at AS as being something so horrible to have.Anyways, I try my best when dealing with people whom still live in the dark ages.


ProfessorX

I think something like this is necessary since autism awareness is gaining - but not necessarily accurately. Asperger's is often being defined by people who have no concept of it's complexities and nuances. Therefore it is simply summed up as you mentioned - geeks, freaks or the occasional scary person. While it might not be possible to avoid politics entirely there still needs to be some effort to counter (or at least keep in check) some of the misinformation. And also to not paint such a rosy picture that no one thinks those with AS (or HFA) need any assistance.

I have actually been ponderig some of the same ideas as well to get better awareness out about AS and living with it...I was aslo looking to start some kind of local chapter in the San Diego area once i am done with my bachalor's degree in Psychology...I definitely feel more stories about those of us living with AS and the everyday struggle of thinking on the outside of the box are needed to bring more awareness of the situation. I think leaving out most of the scientific lingo
and speaking in "own words"`in an entertaining manner would give something that most Asperger related sites dont do. Maybe gaining support from a diagnoised famous person "Dan Ackroyd"or public figure to speak about the forum or site to draw more viewers as well could prove to help as well.