Which one of these people is doing more damage to our image?

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So because the word was used correctly by definition, it's a poor choice of words and shows how she feels about a completely different group of people? I think you may be stretching a bit too much there. I would guess that most people know of leprosy as "leprosy" and not as being called "hansen's" unless they have seen it mentioned on a tv medical drama, and most people rightly assume that the correct terminology for someone who has leprosy is "leper". So because she called lepers "lepers" this tells you that she has some kind of hidden feelings about autistics that we should all be offended by? Isn't that going way too far overboard with this whole idea of looking for offense everywhere business?

Sure, the word has been used to mean being ostracized in most conversation today but it's not used as an insult the same way "ret*d" is used. Are you honestly drawing a parallel between "They are treating him like a leper" and "Hey ret*d, nobody likes you, ya poopyhead"? If you look around on this forum you'll see tons and tons of posts confirming the fact that most of us are, or have been, ostracized more than others and anybody who has been on a grammar school playground knows that it happens to autistics a whole lot, so how exactly is it offensive even if she was trying to use it as a comparison? What was the context of the whole thing anyway?

Are we now at a point where autistics must be offended when anyone even implies that having autism is the least little bit unpleasant or not desirable? Why in God's name does everything ever said, written, thought, implied or hinted at about autism have to become such a personal affront to half the autistics out there? Just because a stranger called a leper a "leper" doesn't mean she wants autistics dead and thinks we are a waste of space. What exactly links her using a correct and nonoffensive word to implied dislike of autistics? If anything, I'd think that actual lepers would be offended by the use of the word to mean outcast, considering that it's treatable and implies that they should be in a colony ringing their bells and watching their own limbs fall off.

Not everything said is a personal attack on autistics, even if you find a way to make it seem so by playing some insult version of six degrees of Kevin Bacon. This obsession with looking for offense everywhere is childish at best and at worst gives us the image of someone who is so oversensitive and unreasonable that people are probably doing the best thing by avoiding us altogether so they don't have to go through the hassle of apologizing for offending when there really is no offense there.

Yes, we should be offended when people promote blatant misconceptions and stereotypes about autistics and when we are insulted we should certainly respond and let others know that we are just as worthy of respect and consideration as NT's, but when people start nitpicking everything to this level I don't see that respect is anything that they will be given and I honestly think that someone with that level of paranoia doesn't deserve to be taken seriously at all.

Maybe they ought to quit striving to have a 'normal' life than and strive for something more realistic that includes their low functioning autistic child/adult being well taken care of if they are unable to do so themselves. Having kids is a gamble you might get a functional workaholic who you can't stop from taking care of themselves even when maybe they do need help but wont admit it or you might get someone who needs support and care their entire life and is unable to hold a job. I think perhaps parents ought to think these things through before having kids and make sure they are ready for any outcome not just the one they want. I won't have kids because while there is the off chance I could have more functional children that would be more successful in life...there is no way I could take care of a baby/todler and if I had a severely autistic child who really did need consistent care throughout life I know i couldn't handle it .

Humans aren't perfect, and sometimes don't know what they can/cannot handle....which means there needs to be a solution for situations when parents are too 'overwhelmed' by a more disabled child....there needs to be an adequate system in place so if parents really cannot care for their children those children still get well cared for rather. In a perfect world a parent would just fix their flaws and make it work and not harm the child....in the real world much of the time children are harmed as they have no where else to go than stay with the parent who cannot care for them so is neglectful or is even abusive.

The quote appeared in another thread:
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How would that have gone over at an event for multiple sclerosis?

MS? An outpouring of sheer outrage and disgust. AS, not so much apparently.

Do you know the story of St Francis and the leper? If you know the story you will see that it's not an insult to either autistics or lepers. If anything it's an indictment of the way society treats autistics and how most people would rather not deal with us on a personal level but would happily write a check or walk to raise money or do almost any type of "good works" for autism as long as they don't have to deal with actual autistics on a one to one basis and spend time rubbing elbows and doing what they might feel is distasteful.

This analogy wouldn't work with MS because society doesn't classify MS the same way as it does autism. There are major differences between the two. The analogy would work with any disease or disorder that causes others to be uncomfortable and to look away and try to ignore the and person's behavior or appearance, etc. It would probably work with Cerebral Palsy and possibly Down Syndrome to name two right off the top of my head.

As for the use of the word "leper", the point of the story is exactly the same whether or not she had said "as St Francis did with the person suffering from Hansen's Disease", although a lot of people wouldn't know what she meant. It doesn't mean that she feels that autistics are contagious and dangerous to the general, healthy population and need to be in strict isolation to prevent a catastrophe. There is a parallel there between the facts that lepers were outcasts and autistics are many times outcasts, but the reason for both is very different, and the fact that leprosy is now known to be treatable and not dangerous to others basically underscores the point that it is simple personal bigotry that causes most autistics from being included more in day to day life. It's certainly not an instance of the saintly parent looking into the eyes of their autistic kids and realizing that they are human because up until that moment they had been under the impression that they were less than human.

Read the story of St Francis and the leper and also read a few discussions and short pieces on what it actually means. Try and find something written by a priest or other religious if you can. That will explain the spiritual interpretation and the major focuses in the story. To understand the comment you need to first understand the factors in the analogy.

Knee jerk reaction doesn't work here.

You have to keep in mind the policies, ideas and mindset of this Autism Speaks. They're curbies, that think of AS as a disease. When they make comparisons to actual diseases, it's not very likely that they're only just innocently referring to the charity side of the fable.

Hey, when you're tempering chocolate, why does it need to rapidly come up and down in temperature? Will it be any different doing it slowly? Why fast? What temp does it need to hit?

I'm for a cure, if that were possible, or for at least more effective treatment and I see autism as a disease, as does the medical profession. Does that make me the next Hitler in training? I certainly don't think it does. Just because ASpeaks sees it as a disease and wants a cure or better treatment, doesn't mean they are out to get autistics or wipe autism off the face of the earth by the implementation of a final solution or any means necessary. Most medical professionals consider autism a disease, you know. That doesn't make everyone's point of view slanted against autistics. You can dislike the autism without disliking autistics. It's entirely possible and actually it's a pretty common sense point of view. Nobody wants to be autistic if they had a choice, nobody jumps up and down and says "Yay my kids autistic!" nobody is thrilled to struggle with the daily problems that autism causes that have nothing to do with social difficulties.

There's a lot more to it than just the social side of it. If it were nothing more than severe shyness, inability to relate to others in a halfway pleasant way, and a set of odd and socially unacceptable habits and preferences then I'd agree with you that it needs to be left alone, but there's much more to autism than that. Also, focusing on raising money for research and such for severe autism instead of milder AS means that they aren't exactly looking to cure me or you, and while they would probably rather not offend us, our feelings don't matter to them as much as getting the help they can get for profoundly autistic people, and thats as it should be actually.

Being so self absorbed and worrying so much about how we might be perceived by others that we would actually try to undermine the efforts of a group that is working towards help and treatment for people who are severely limited by and yes suffering from a neurological disorder and have extremely limited options for the future because of it, is really a damn selfish stance if you ask me. Maybe by being open about your own autism and allowing others to see the fact that you are functioning and not sitting in the corner in a helmet and diapers unable to communicate at all is probably the best way to go about getting the information to the public that autism is a spectrum and there are just as many people on the milder side of it as on the severe. Why not organize your own autism walk, but have it only open to autistics. Recruit people with high functioning autism. Get the tv news there to cover it. Let them see a group of regular, everyday people doing something for social change to help not only themselves but also others, and let them see that those people are autistic too. Thats the kind of thing that's going to call attention to the fact that all autism isn't the lowest functioning kind that ASpeaks talks about. Sitting back and complaining that ASpeaks isn't making sure people know about high functioning autism just reinforces the stereotype of autistics being unable to do things for themselves. Get out there and show them that we are able to. Hell, an autistic walk by autistics for autism therapy, research or what have you, nationwide in many cities and all covered by the media would be a really big step in the right direction and would actually do more to educate the public about the spectrum part of spectrum disorders than anything ASpeaks could do.

I actually spoke with someone from ASpeaks today and am waiting on a call later on this week from someone else in their company. I explained that I have AS, I hear a lot of hype in the autistic community about them and I simply wanted to call and speak to someone myself, rather than reading a website or being given a press kit or a simplified brush off and sent on my way. The fellow I talked with was eager to get me to the right person who would be able to answer some of my questions or find out the info for me if need be. I'll wait and see what they say, and I have a few questions prepared for them and by the time they call, I'm sure I'll have a few more. I'll keep ya'll posted on it if you want, and if not, that's ok too. I'm simply finding out for myself.

Now, on to chocolate!!
I just checked with my daughter and she said that she doesn't do hers rapidly, she lets hers sit until it's down to the temp. She said she thinks the temp is 89 but she doesn't know off the top of her head, she always looks up the temp each time. Also, she can give you the name of her textbook for that class and you could buy it on Amazon I'm pretty sure. Let me know if you want it.

"I do think there is a benefit in trying to help people with autism-spectrum conditions with areas of difficulty such as emotion recognition," says Professor Simon Baron-Cohen, the director of the Autism Research Centre in Cambridge. "Nobody would dispute the place for interventions that alleviate areas of difficulty, while leaving the areas of strength untouched. But to talk about a 'cure for autism' is a sledge-hammer approach and the fear would be that in the process of alleviating the areas of difficulty, the qualities that are special - such as the remarkable attention to detail, and the ability to concentrate for long periods on a small topic in depth - would be lost. Autism is both a disability and a difference. We need to find ways of alleviating the disability while respecting and valuing the difference."

On this rare occasion, I agree with SBC (for once).

Where do I start?
No, it isn't a disease, that's simply counter-factual, there might be medical professionals (which aren't considered experts to begin with) out there that think that, but that doesn't somehow make it factual. Yes, yes that would indeed give people a false view of us if they spread the stigma of disease. For the definition of disease, it's something that's unwelcome, that inflicts injury upon you, and something that's not normally part of the person. The definition is the exact opposite of Autism and Asperger's. No, those two things are one and the same, so it's not a common sense thing. It is the person, you're an Autistic person, you're an Aspergian, there's no separation from the person, because those things ARE the person. It's like saying to a gay guy "I love you, but I hate your gayness." It doesn't make sense because they're a gay person, it's not possible to separate the two. No, that just means they're a homophobe. No one wants to be Autistic? What the? If I had my way with a do-over in life and had the option, there's no way in hell I'm going to pick NT. And that's part of the problem when that's seen as something horrid rather than something to be celebratory about. Except the social difficulties you're talking about is not inherently caused by Autism or Asperger's.





What the. Those are all just stigmas, do you honestly think Aspergians are like that? It's not about being offended or not, their end game is eugenic elimination, where we're considered a disease. Yes, help other people, I'm not suggesting otherwise. Autism Speaks, they're not looking to help, they're looking to change what they don't like. Autism and Asperger's is beneficial and valuable, not something you want to get rid of. When we look at major advances in both science and art, it has always come from someone that thinks very differently, is very focused, and doesn't conform and simply follow the herd. It would be a deathblow to suddenly abort them all, gay people, AS people, left handed people, we NEED these genetic variations in order to thrive as a species.





The vile stigmas and the bigotry is precisely why we have an 80% unemployment rate, despite being arguably better than NTs at most jobs. It's why acceptance of AS people is so low in society. It's why NTs are pampered by comparison and get all this stuff, while AS people are given a mere pittance. It's how people can think we're suffering or diseased, or how parents find it easy to go back to thinking that's straight out of the 1940's.

So yeah, combating the vile stigmas is kind of a big deal.
No, it's not selfish to fight against that, in order to be accepted and viewed as human being, for a chance at having equality and parity.





I suspect that putting a 3rd of the chocolate in at the end, is just a way to save time and do it quickly. It might end up being a better chocolate by doing it the slow and gentle way? I don't know.
I don't have the money for books, perhaps it's in the library.

The problem is that Bob Wright as the former head of GM/NBC is one influential guy. He is one of the boys, and because of that, his views that Autism is some sort of Poltergeist will influence decision makers. There was talk of pro choice but what if because the only autism politicians know is the Autism Speaks version, a mandated cure is legislated. What if legislation or just the free market just knowing one version of autism force a lot of people to take it via financial inducements and penalties such as you can't be employed by us unless you take the cure. We complain about the stigma now, what will come down on the people who refuse a cure against the "dreaded disease"? A refusal will taken as evidence of severe mental illness for sure. Forgetting abortion, any autistic under 18 is not going to have a choice if that is what the parents want.

With deafness while some research money goes towered cures, a lot of it goes to to helping hearing people and deaf people to communicate with each other. What I see most often written by Autistic parents is I just wish there was some way I knew what he or she is thinking. Yet for Autism all the money is for an outright cure or therapy meant to make the Autistic as Neurotypical as possible.

As for the “over the top” advertising with maybe with the exception of the cancer especially the anti smoking ads no disease and disability fund raising has come close to being this negative. No, my son is psychotic I thought about driving off the bridge with him ads. No Heart disease is a national emergency we need to call out the marines, the army now ads.

My predictions are on the severe pessimistic side for sure. Autism Speaks not only does not have Autistics represented in decision making position, they lobbied against provisions that mandates a disability organization have a certain amount of people with said disability, rescinded a job offer to a mother who asked for workplace accommodations for her autistic son, sued a teen who put up a video that mocked them, despite claiming they are anti aversive let the Judge Rotenberg Torture center have a booth at their resource fair. They have given me no reason to give them any benefit of doubt and plenty of reasons to assume the worst. In the larger scheme since 2001 there is evidence that America does not react well to fear, such as giving up many rights that were considered sacred. There is some real reasons to fear Autism Speaks combined with societal factors may represent a extensional threat to the Autism Community.

Cool. I wold be interested in their response. Particularly if they offer you assistance.

The thing about Autism Speaks that bothers me somewhat is their notion that Autism is "all bad"--that there is no positive aspects of having an autistic mindset.

Good luck on the Q/A, Olive Oil!

This commentary expresses it for me, and the italics are added by me:

5 New Year’s Resolutions for Autism Speaks
December 22, 2014 by M Kelter

I was already of the opinion that Autism Speaks is a pretty awful group. Their message is so dire, bleak, that it seemed pretty clear to me: they do more harm than good.


But when the co-founder of AS recently addressed the Vatican and equated autism with leprosy…and used dehumanizing words that infantilize autistics…the group really took their rhetoric to new lows. (Don’t take my word for it…read this transcript of the Vatican statement, courtesy of Unstrange Mind. Wright’s nasty performance here is a perfect example of everything that is wrong with AS.)

But, hey…a new year is upon us. Great time to reflect, identify problems, change course.

With that in mind, I’ve put together this list of helpful resolutions for AS to consider. Think of it as a corrective…as my little gift to you.

Autism Speaks: take a deep breath. Hold it…visualize 2015. Breath out.

Then repeat after me. These are your New Year’s resolutions…

1. We will stop using language that stigmatizes autistics

I mean, you do realize…the stuff you’re saying about autistics? That we’re lepers? Burdens? You’re saying that stuff out loud. We can totally hear you.

Case in point: I’ve been told by way too many parents that they took their autistic child to an event sponsored by AS (a walk, for example) thinking it would be a fun outing for their family…only have to someone from Autism Speaks address the crowd and refer to autistics as a burden, a scourge, all while their child was standing right there, taking it in.

Demonizing autism might work as a fund-raising tool…but it’s the opposite of advocacy. It hurts and damages the community. And autistics hear all of it. Kids, teens, adults…they hear every single derogatory word you say.

Stigmatizing autism: a big “don’t” for 2015.

2. We will stop spreading false stereotypes.

There’s nothing wrong with discussing the challenges presented by autism. The hard stuff, the difficult situations, the tough days…all of that should be on the table. But so should every other aspect of life on the spectrum. The personalities, the competence…the fact that autistics are human beings who deserve to be treated with dignity and respect- in other words, all of the stuff you leave out…that should be included as well.

By representing only a small, misleading facet of the autism spectrum- by emphasizing only the bleak and (thanks to your phrasing) the hopeless – you reinforce toxic, outdated stereotypes.

3. We will update our rhetoric.

Seriously…when everything you say sounds like an autism pamphlet straight out of the 1950s, you have a problem.

Our understanding of autism has changed drastically in recent years…yet your perspective is virtually unchanged from the way we viewed autism many decades ago. According to you, autistics are “shut down”, “lost in their own world”…they’re missing, barely recognizable as people (again, if it sounds like I’m exaggerating, do check out Wright’s statement to the Vatican).

That doesn’t mean there are no tough days and challenges to talk about. But it does mean that the mindset of your organization is beyond archaic. The rhetoric of AS represents a view of autism that is unbelievably out of date and serves only to inundate the public with destructive misinformation.

Autism is a spectrum. Stop hiding that fact. Start educating the public about about what “spectrum” means using descriptions that are current, accurate.

2015: pretty great year to stop sounding like it’s 1950.

4. We will stop using stats that include ALL autistics if we’re going to exclude most autistic voices.

You like using prevalence rates to scare up donations- “1 in 68 children are on the autism spectrum”, “70 million people have autism”, and so on.

As many have pointed out, the problem is that this statistic represents the full autism spectrum. It includes a huge range of experiences…from highly verbal autistics, to non-verbal autistics (who often find alternate methods of communication); from folks who can live independently to those who need supports and assistance with many daily living activities

The spectrum is a wide range of traits…yet the message of Autism Speaks only accounts for a small percentage of autistic experiences.

In a context where AS can so regularly misrepresent what autism is, the 1 in 68 statistic is manipulative. It’s dishonest. It’s selective amnesia for the sake of lucrative fear-mongering.

If you’re going to exclude so many autistic perspectives, fair enough…but stop using statistics that include all autistics.

5. We will start advocating for the people we actually claim to advocate for.

Your organization isn’t called “Parents Speak…about how much they hate autism”. It’s called Autism Speaks. Try actually doing some advocacy for autistics…not just the very small percentage of hateful people who agree with you that autism is akin to leprosy.

Absorb autistic perspectives…listen to the community. Stop working against the very people you claim to speak for.

These are simple suggestions. Resolutions. Ways to end the harm you bring with every event, every statement, to the autism community.


But no matter who is doing the speaking, we have to do better than this. We have to elevate these discussions, lift them far above the bottom-feeding rhetoric of Suzanne Wright and her organization.

Lets say that Speaks does do all these things, and they make a miraculous turn around and become to an actual charity that helps people.

Does this wipe clean all they've done? Are people able to excuse all that?

No, it wouldn't let them off the hook, not at all. They would have to frankly acknowledge the error of their ways and philosophies, and if they did that, the only honorable action would be to self-destruct, donate the money to WP members to set up programmes that promoted neurodiversity and then shut up.

It's an example of offensive behaviour, not a rebuttal to it.

Personal attacks aren't arguments. Try dismissing my ideas rather than me.



People with Hansen‘s disease might also be offended by the implications of being called lepers. Her use of it was not to decry the view of autistics as "separate," but to reinforce it. She was saying we are like lepers. She sees autistic people as separate from society.

Did you hear back from Autism Speaks yet?