Autism Speaks - is it good or is it bad?

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I am not completely against Autism Speaks, I do think they do some good in helping with Autism, but they also have major issues.

They have a lack of Autistic people in leadership positions, as well as their continued support for Anti-Vaccine research, despite their being no credible evidence of Vaccine causing Autism. Why spend so many millions a year on junk research

FYI I am not one of these rabid Anti-Cure Autistics, many Autistics support finding a cure, not only for them self, but for others who are more profoundly affected.

Last edited by DVCal on 03 Apr 2013, 12:59 pm, edited 3 times in total.

I think they figure that they can change Autism Speaks somehow. Since we've already Godwinned this post, think Schindler and the Nazis. I don't think they're right, but I don't think they're traitors or anything.

It's common for people to work with Autism Speaks just because they are such a huge organization, without having a clue what autistic self-advocates tend to think of them. Some people will work with them just because they are so big, just because it gives them so much exposure. WP itself seems to fall into this category.

Anyway, many autistic people do suffer from self-directed prejudice--the belief that they aren't good enough because they have autism. It's perfectly possible to be prejudiced against a group you belong to. Such people often try to preserve their sense of self-worth by identifying with the "inspirational success story" or "poster child" identity, and you'll see them saying things like, "I have to try to overcome autism."

How would anyone know you were "autistic" unless you made it an issue and told everyone?

Why would I tell anyone I was ever on the spectrum? I want to be judged by my own merits and faults - not by anyone else's.

That's why I don't like labels and I don't use them. That's why I'm not judged in the sense that you feel you are..

I don't call myself an Aspie or a non-Aspie. I see myself as nuerodiverse. And it works.

Oh, I don't know... maybe because you might occasionally need an accommodation of some sort? Or maybe because you can't hide it very long without people knowing you are at least strange or disabled in some way? Even worse, if they interpret your actions NT-style, they may believe that you are trying to hurt them or that you dislike them.

Some autistic people can pretend to be NT forever if they like. Most of us can't. I think that it's a betrayal of the rest of the spectrum to disassociate yourself from people who are visibly disabled.

If you are autistic how can you appear normal? They might not know I'm autistic but they definitely think something is wrong with me and treat me accordingly.

I don't really know to be honest, I tend towards a negative view though as the way the describe and treat autistic people from my impression is as though we are blank slates with nothing going on in our heads who can be molded to more normal behavior depending on what it is the people around them want.

That's interesting, I had no idea I was on the spectrum as a child and early on I wanted to be part of the group just like everyone else and tried, but even at an early age people could tell there was something different about me or that I was 'weird' and the majority were not very tolerant of it. So not so sure you're theory holds true in most cases.

To the comments above.

If you are direly lacking in social skills and you don't make a really strong effort to improve, whether you say you are autistic or not, people won't be comfortable around you.

At this point, I know I was born autistic (to a much greater extent than 90% of the people on this forum I'm willing to bet), but I socialize and communicate with other people just as naturally and with ease as a nuerotypical does because I worked on myself.

I doubt it... If you were diagnosed autistic and as good socially as NTs, I'd be willing to bet that one of these is also true:
1. You were never autistic to begin with; most likely you had misdiagnosed social anxiety disorder and believed yourself "recovered from autism" when your anxiety resolved itself.
2. You have spent all of your effort on learning social skills and have most likely developed no other abilities, leaving you with low-average social skills at the expense of never developing your strengths.
3. You believe you are socially skilled, but actually are not. It is common for unskilled people to believe they are skilled simply because they are unable to evaluate their own performance effectively.
4. Your autism is extremely atypical and affects mostly language and repetitive/restricted behavior, leaving socializing mostly unchanged.
5. You are in the process of burning out and will, if things keep going the same way, either come down with a mental illness (ex., depression) or regress sharply, losing access to your higher-level skills.
6. You are one of the "late-bloomers" who are socially delayed in early childhood but have no autistic traits by age 8.

Personally, I don't try to do things NT-style. I communicate in my own way. If I can get ideas from me to them, that's good enough for me, and I can spend the rest of my time doing something that will actually be useful and contribute to the rest of the world. Staying in the closet is for people who hate themselves or fear others, and either one is no good way to live.

Autism Speaks is incontrovertibly bad alright, more often I get the feeling that their prioritized objective is to both demonize and eradicate autistic culture, which may indeed be conspicuous when you account for their negative, or otherwise, misleading perceptions, stereotypes, depictions, and platitudes of autistics in general. They seem to correspond with the vacuous notions of these so-called "Anti-Vaccine" propaganda groups that it often provokes me to envisage within my exceptional mind that they will officially form an alliance with them - prospectively speaking. I also get over-stimulated with rage with regards to their misinforming and rhetoric statements they advertently gloat about - such as "Autism is a debilitating disease," "Autism is a frightening epidemic," or "Autism is more common than AIDS, cancer, cerebral palsy, cystic fibrosis, muscular dystrophy or Down syndrome – combined" which I find utmost unenviable beyond my own comprehension.

I've heard rumours that the organization has a proclivity to legally threaten, bully and intimidate any of the more able autistics who oppose and express their contemptuousness towards their aims - I can hardly blame them. This is probably the reason why it is such a rarity that they promote any media illustrations of individuals within the high-functioning end of the spectrum at all, they simply persist with their ideological generalizations and propaganda about the implications of autism just to show they mean business - they wants us removed permanently from the gene pool.

__________________
Diagnosed with "Classical" Asperger's syndrome in 1998. (Clinical psychologist).
AQ: 48/50

Sweetleaf I was Dxed at like 10-11 and I had the same thing happen in preschool age 3, even preschoolers and kindergardeners shunned me.

To minervx,
I tryed to immitate others and blend in with the NT world both pre and post Dx, Tryed really hard at it. There was a turning point when I bluntly realised it was not working

One person who I knew of decided to talk with the person I was working with one night(I was helping him with his race car), I just happended to overhear what they were saying as I was just around the corner working unkown to them, the talk went like this, "How do you like working with rapidroy? Hes good, knows what hes doing, works hard ect.", then came the shocker "He has some mental issues doesn't he?". It was becoming clear the charade had failed as this guy only knew me from this setting, he did not know me or my family personally and was not that sharp of a thinker. Now its quite clear to me just how bad I can't act NT, so if I can't act NT feeling good in my element how in the world am I suppost act NT in daily life? Simple anwser I can't, its not worth wasting my reasources doing it when I be using them to do real good in the world.

Also we have pride in being Canadian, American etc., pride in being born into different ethnic backgrounds etc. and thats mostly considered good even though being born into any of this was out of your control(I understand some people do immigrate into nationallity). So why is pride in your neurotype such a bad thing. In preticular one that presents meny extra challanges for the owner, why can't I take pride in beating the expectations placed on me and my neurotype?

I also did much better in earlier times. You are now 21. At this age I could do the effort very long, and needed some time for me to from now and then. Now I am 33 and I am not totally in the ass after two days without a pause, I am totally in the ass around 14:00. And around that time I still have 4 hours of work to do. So I need to separate myself then. Its not about "wanting". I would want to be full of energy and laughing, when I come home to my partner, I´d love to talk and joke with him, and spend my time with my SIs. But you cant choose and you have to accept realities. And if you dont accept and push yourself for years "to make a really strong effort to improve" when your body is telling you since 4 hours, that you are burnt out, you simply go my way, get a major depression and Burn out, get to therapy and then you get diagnosed with Asperger/HFA with 31.

You also cant tell, that someone with more issues has it harder or not. So I am very deep into the spectrum, still I havnt been diagnosed until 31 because of me having a very high IQ. So lots of stuff I simply learned as schemes, found myself other ways of doing, ...

Maybe you have luck and will have less issues. My best wishes for it. But ignoring the fact that every body has its own physical limits and telling that if someone cant do that socialising stuff any longer, he is just not willing "to make a really strong effort to improve", is nonsense. Going to your limits from time to time is ok, but these limits are different for everyone.

Noone is against people that want to help you to improve yourself, to comfort YOU. Thats whats important to tell if someone is bad or not. Many people, that tell you that they want to help you, are not interested on increasing your comfort in your life. For them its simply about comforting everyone around you, to ignore your own deeds so everyone around you is happy, anyway if you are already thinking about suicide. These are no helpers. Instead of training you, what they should train you: That everyones respect for being comforted should be accepted in the same way, they teach you that your wishes to be comforted are not to be accepted because they are not normal and only the normal deeds to be comforted needs to be respected. People like those are simply egoistic bastards that dont care for you any second.

There are plenty of groups, that will try to help you to socialize better, because they want to help you to feel more comforted. But "Autism speaks" I never heard speaking in that way. Everythings simply about getting your kid as normal as possible, without any thought if the child itself still feels comfortable.

Well, I met all of diagnostic criteria, including loss of speech for an entire year as a toddler. I'm far from perfect socially, but I'm on a level with most other people my age. I have a good number of friends, I make friends easily, I've been told I recognize body language very well and people enjoy my company because they do ask for it.

You are in the same boat as the people who accuse bodybuilders of using steroids, suggest that professional piano players were always gifted, and people who have nice jobs got lucky. It would be convenient for you to believe that I'm exaggerating my history of autism, or as you suggest, if I am socially successful there must be some catch that made the whole journey not worth it. If making a 180 degree change from a supposedly uncurable disorder is shut down as impossible, it does give comfort for the people who are too lazy or closed-minded to change.

Can you just accept the fact that a lot of people in life were in the same exact position as you and pushed through because they worked hard and efficiently?

minervx, if you hold a valid AS Dx and still have social issues and I suppose other AS traits then why have you chosen NT for your profile?

Because I had to select an option (and I hate labels). I'm overall great at socializing and I really currently have none of the observable diagnostic traits, and I've had numerous psychologists and psychiatrists tell me that they would have never guessed, but I think I lean more toward the nuerotypical side (at the very least, what people on here consider to be "NT") in terms of how I behave and my though process, but I'm not a fan of either label. If I had to pick a label for me, I'd call myself nuerodiverse.

But it's just semantics, what can you do.

Not when many of us, including me, have a history of working very hard, and burning out because of it to the point of mental or physical illness. If you can become essentially NT just by "working hard and efficiently", then you are in a very small minority. Most of us, when we work as hard as we can, either run out of energy or discover that our best efforts simply aren't enough.