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By two different friends of mine, at two different times in my life, I have been unofficially diagnosed. One is a child psyc and the other an adolescent psyc, thus they couldn't officially diagnose me being an adult friend of theirs but they both know their stuff.

Can anyone tell me why the people on the rest of the AS, seem to need aspies to consider themselves the same as them?
Why do people seem to want to prevent aspies from having our own communities, logos, etc?

Cancer is also an umbrella term.
Does this mean we should get rid of pink ribbon day because people who have a different type of cancer may feel left out?
Should we tell women with breast cancer that they can't have breast cancer only support groups and have to have guys with prostate cancer in the groups as well?

High functioning aspies do have some experiences similar to AS. Indeed, similar to anyone not NT.
But they also have very specific issues that others don't have, and would struggle talking about.

I've been think I'm just being paranoid but this phenomenon keeps cropping up all over the net.

A lot of people seem to believe be that many people that identify as Aspie do so because of ableism ie, not wanting to be associated with lower functioning Autistics. It is not scientific but from what I have observed it is the parents of low functioning autistic's not the autistics themselves that believe that Aspergers is not real autism thus the expression "If you have the ability advocate for yourself you have no right to speak for our kids" . A lot of non general psychologists and specialists in children s autism believe that Aspergers is just an excuse for laziness, and that there there has been massive overdiagnosis. As far as people on the part of the spectrum known as Aspergers many if not most believe the label has gotten such negative associations it is best to do without it. Also there is the belief that anything but identification with Autism hurts unity in the fight for Autistic acceptance.

As as a person who strongly believes this is all wrong I am conflicted between continuing to dispute what I see as a wrong, a caving in to bullies or accepting what seemingly the majority of our community has decided. While I have the right to identify as I please what is the point of identifying with a label the people you are identifying with have rejected?

Last edited by ASPartOfMe on 14 Sep 2014, 5:01 am, edited 1 time in total.

I'm a parent of 2 low-functioning autistic children. I feel like there is an "elitism" to Asperger's sometimes (well, actually a lot of the time- although this website has been surprisingly kind to me, haha). I feel like because LF people are not usually able to communicate much if at all, they're undesirable. But I will acknowledge that you raise a good point about the comparison with cancer support groups.

Something interesting happened to me last year:
We went to the Autism Speaks Walk, and we had a fabulous time. The walk events were set with the expectation that LF autistic kids and teenagers AND ADULTS would be there, and it was accommodating for them. There was actually stuff that my kids enjoyed that they were allowed to do. That never happens anymore because they're too old for everything. So that was super awesome, great, fantastic, wooohoo...and then we arrived at the car and found the tires slashed and a rude message about how we are terrible people for supporting Autism Speaks.

Well. I am sympathetic to why Autism Speaks is disliked. I'm not a big fan myself- it's not a particularly good charity from the money side of things or their agenda even. But the walk is fun. It just is. Anyway, I looked around for something else to do instead of the walk, and I did find the Asperger's group in our city. They put on an event that we went to. It's the only other thing to do. I assume they are anti-Autism-Speaks. But you know what? We weren't welcome there at all. There was nothing for my kids to do. It was less appropriate than the freaking Chinese New Year Parade (which is inappropriate because it's really loud and crowded).

I felt really sad. My friends made fun of me for even going because it's well known fact that Asperger's groups don't want LF people there. I did know that too, but I guess I was hopeful. I don't know what really. It seems kind of ironic to me actually that Autism Speaks is ALL we've got, but the Asperger's crowd don't want us going there. We're supposed to just be shut-ins I guess.

Take from it what you will. I don't know. I don't have all the answers.

This is exactly why we need a social group in every city, to be an alternative to **** ***** like Autism Speaks, run by AS people, for AS people. Are you on the Gold Coast by chance? You could join our crew if that were the case, it's only for adults though. We've both Au's and Aspergians, including some NTs, as our group supports neurodiversity, but mainly AS people.

The hate Autism Speaks and their supporters gets is a justified hate, they're horrid people, and should be hated. I don't think you should be likened to a supporter, just for attending some sort of walk of theirs, not fair having that done to your car. For the people that do support Autism Speaks, but don't understand what their policies are, or even fed lies about their policies, and don't know what happens to the money they donate, those people are victims of Autism Speaks.

Not on the Gold Coast. I think our Aspie group is basically what you described. Except as OP is expressing also, they don't want LF people to come near with a 10-foot pole.

The National Autistic Society of Britain seems pretty good, but we don't live there (and if you disagree with me, I haven't really looked into it thoroughly). Where I live, there are only 2 choices. (1) The Aspies who don't want my kids, and (2) Autism Speaks which do want them but are a sketchy charity. That's it. My theory is that the majority of parents of profoundly autistic individuals are just too damn busy, tired, and broke to start their own not-for-profit group (and the individuals themselves can't because they're profoundly autistic). I definitely don't have time to "be the change I want to see". I need someone else to do it, but all the people who care are in the same boat as me, LOL.

Oh, they're kids? Yeah, we uh, we wouldn't accept them either, not because they're Au or non-verbal, but because, well, they're kids, it wouldn't really fit or be appropriate you see.

It was quite a while ago, but wouldn't high school fit the bill or something?

Or did you mean kids as in they're your children, but not the age of kids? Time constraints and work etc, maybe just something small and easy? Like a facebook group, and see if you can gather all the people in your area that are in the same situation, then see where it goes from there. Perhaps, with a significant number of people, you can ask for some sort of support from the local council, maybe? Not sure why LF would be unwelcome in the first place.

Yeah they're 15 and 12. But this thing we went to was for kids (with Asperger's). It wasn't inappropriate due to their age.

My eldest is in high school. There are no clubs for him though. He plays minecraft (! !) and I tried to get his aide to take him to the minecraft club and the school said they didn't have the support. I guess they decided he always needs 2:1 so even though he only has one specific aide there has to be another sp.ed. teacher with him. So anyway they said they couldn't accommodate that. He also films everything (he carries a camera) and I tried to get them to play a film he made in the film contest they ran, and they also said no to that because all the contestants had to make a speech. So I think this leads us back to the idea of being unwanted...

I have a few like-minded friends who I do stuff with. But sometimes it's nice to do something in the community that's not just your tiny little circle of friends. That's more what events such as the Autism Speaks walk provide that's different, and which I wish their were more options of. I wouldn't know how to start something like that anyway but maybe some day...

Terroristic attacks against Autistic Speaks or there supporters are wrong on many levels. Morally because innocent people will get hurt. The organization itself and many supporters are fanatics. This will make those people more fanatical and make non fanatical supporters fanatical. After Adam Lanza, Elliot Rodgers more association between Aspies and what will seem to most people like unhinged violence is not needed. Sympathy money will pour in. Autism Speaks does not need more money

Exactly. I maintain that if the people who slashed my tires had spent that time organising an event that welcomed people of all abilities in support of neurodiversity, and invited me to it instead of writing a rude message, I totally would have gone to that instead of the Autism Speaks walk. That would be way more effective in getting people away from Autism Speaks. (But then they'd have to have people like my kids at their group...which they don't want- and as the OP said: why should they?)

That was an act of vandalism and it was despicable for sure, but I don't think the word "terroristic" should be used so casually. Terrorism involves violence.

its not the same thing. pretty much everywhere but the us, most mass media, and a lot of psychologists in the us doesn't think its the same thing so i doubt it is. if anything political correctness and the lobbying of drug companies are probably the reason the current dsm-v is what it is. i also think that different cultures probably handle it differently and its handled differently depending on where you live and what happens in doubt. wesley Willis for instance became a icon in alternative music and the underground as well as with punk rockers due to the fact that he controlled his agressive and paranoid tendencies by making very simplistic and angry rock music. similarly im going to go out on a limb here and say that the whole weird Japanese subculture that people who watch anime have may be a different society where a diagnosis would be more damaging's way of dealing with very similar behaviors. creating a small group of people who make art, are somewhat counter culture and cool but are also nerdy, and are aloud to not spend as much time outside as other people or not have a normal or healthy social life and have it be okay arguably serves a very specific purpose. i also suspect that some of why european art movements were so focused on the art of the mentally ill is probably because it was a specialized product and market that allowed people who either wise would have had a very hard time supporting themselves to make a product only they could make, Adolf wölfli's art was actually originally brought to an art exhibit by one of his psychologists who thought that he might deserve some recognition for his creations.

More for Verax, I'm not resentful with being in the same boat with Au's, we've Au's or LF or whatever you want to call it in our crew. That's not what happened though, the APA essentially committed fraud when they wrote the new DSM-5. The part I would be resentful about, would be being grossly misrepresented because of their BS. Instead of being thought of as different, I'm thought of as a disorder, and an unwanted one at that, when in reality, I would NOT want to be an NT (no offence to NTs). There's (in technical terms) no more "Asperger's" anymore, instead it's "mild Autism", I'm heavily disenfranchised, there's nothing mild about that.

i agree, and honestly thats why we need to protest. we need to create a large orginization that actually represents us. i dont see anyone doing that or really getting out there and doing that and thats what concerns me. i want to do that. im willing to start that right now even. i dont think it would be that big at first, but we could grow, and its something i want to do. were not ill and we dont just have mild aspergers and we dont want to be cured. i want to create an orginization that stands by that.

ASAN does that without leaving out those with classic autism or other autism spectrum disorders.

Even wrongplanet defines Asperger's as mild autism. That's just what it is. That's what it has been since Hans Asperger first described it (as Autistic Psychopathy). It has always been a type of autism and always will be.

http://www.wrongplanet.net/article112.html

The thing is, you seem really pissed off/passionate/invested in this issue. That's fine, and understandable.

My point- Asperger's IS a PDD. Your point, though, seems to be that it has been subsumed under the Autism umbrella and you find it not only inappropriate but as invalidating of a good part of your identity... or how you choose to identify. [I apologize if any of that was not perfectly spot on, or even mostly incorrect. But when someone is giving you s**t it's difficult to see what they are on about. Get it?]

If I got your point even half-right- I actually find it understandable. However, it doesn't mean that Asperger's is not a PDD- even when it was a separate diagnosis, it was a PDD and it stood alone and apart as distinct from Autism- as you feel it should.

So, if you are pissed and passionate- right on- but can... we move away from pulling the claws out if someone wants to debate/discuss/perhaps even call you on a legitimate technicality?

My education is pretty solid, though not traditional [I've studied at various formal schools for several years, though changed my specific program, always revolving around psych and having some practical experience as well].
I'm not dx'd as Asperger's. I'm dx'd as HFA. I can understand, though, for different reasons and from a different point of view, that it can be really important to distinguish the two.

I actually tend to do academic research into PDDs as well and while they are all considered PDDs, I consider HFA, PDDNOS and Asperger's different enough to be distinct diagnoses. [Not that it matters. I'm just a little 'ol nobody. Who cares?]

I did a pretty large lit review and found that, even given that the articles straddled DSM III, IV, and IV-TR, if you account for that? There are distinct things that segregate the disorders enough to justify each one- this was before they announced they were going to swallow everything up into autism. But this isn't a massive secret- there are a lot of studies and research that support this view.

There is so much more evidence, for example, for having those distinct diagnostic labels than there pretty much EVER has been for bipolar I, II NOS- but that is still going ridiculous and strong for some reason.

Also, if anyone in NE US is looking for something [depending on what one is looking for] ---> http://www.aane.org/

it implies that its a disease to be cured or that its the same as having classic autism, its not. its made things both harder and easier at diffrent points and its not really good or bad so much as diffrent.