Offer from Autism Speaks, please give your opinion

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Reminds me of:

Welcome to Holland by Emily Perl Kingsley

The message has become universal.

Last edited by Sora on 12 Apr 2008, 4:35 pm, edited 2 times in total.

Sora, I hadn't seen that one before.

LOVED it.

Oh, and my parents immigrated from Holland. The country, not the parable, lol.

I haven't seen that text often in the English autistic community yet either. I knew it from German AS(D) groups though.

Glad you enjoyed it DW_a_mom!

I would like if it were possible to foster a more positive opinion and approach from Autism Speaks. However, I don't see them ever promoting neurodiversity. To me, there's no middle ground. Autism "curebies" disturb me almost as much as people who want to "cure" homosexuals and any other "different" group of people. Just because we're different doesn't mean we need cured. Frankly, I'm glad I'm not a cookie cutter human.

Just a quick aside:

Mikomi's location cracked me up!

Indeed. But back on topic...

Personally, until autism speaks rectifies its attitude towards autistics and starts considering autism as something that can be worked with and not something that needs to be eradicated, like a disease, then i would suggest no affiliation with then wih them whatsoever. Giving them our stories or even the time of day would look as if we agree wtih their views, which i am sure 90% of us don't.

Pay them no mind until they are ready to accept a more positive outlook.

I may be mistaken, but it seems to me that Autism Speaks started as a group of parents of kids with LFA and who were difficult to control or teach. They were looking for the best answers they could find to teach their children to become part of society and succeed as they (the parents) understood success. In short, they were working with the information they had at the time. They were ripe for someone saying a cure was possible.

Now they're finding out the autistic spectrum is much broader and the issues more complicated than they realized. They have to look out for all kinds of people flying at them looking for money for this program or that study. Don't blame Suzanne Wright if she acts suspicious of WrongPlanet. She doesn't know Alex from Adam's off ox. Give it time. There are people with good credentials and bad intentions they have to deal with. Autism Speaks needs the information NicholasGray can provide for them. He already has two good stories to pursue: Smelena's and Tom's.

Let's face it: right now Autism Speaks can project any image of autism they want and there's not one damn thing we can do about it. If Mrs. Wright says she's willing to have positive images posted then let's give her a chance. If it works, great. If not, we can withdraw.

I did, and posted this,

I think that autism is not simply a spectrum. It is at the very least a landscape, to be divided into a person's functionality in two dimensions. One dimension being functioning as related to autistic behaviours, the other related to cognitive ability.

I also think that current knowledge of autism does not allow proper measure of either of these. I think the very definition of autism is questionable as regards our ability to objectively diagnose the condition.

Further, while some persons within autism certainly are severely and negatively enough impacted by autism to warrant the perjorative terms of "diagnosis", and "disorder", that some of us can legitimately see autism as a set of personal characteristics rather than a diaggnosable disorder.

I think that for many of us the main negatives of autism are less intrinsic to the condition than to our treatment by society.

Whereas there are laws to preclude use of the "N word", autism and ret*d carry strong negative connotations and are allowed. Whereas the physically disabled have ramps and curb cuts, the autistic person must play social games like an NT or face consequences.

Furthermore I note that very little said about autism is said by autistic persons! Until we, one of the last persecuted minorities, gain the obvious right to self define our nature misstatements such as these:

1. Autistic people take things literally and so have no sense of humor.

2. For the same reason they cannot employ metaphors or analogies.

4. Nor can they understand saecasm or irony.

5. Autistic people are without real emotions.

6. Autistic people can memorize vast amounts of information. They do so by rote, however, and do not understand.

will continue to be said and believed and used as practical points of diagnosis.

There is indeed some real overarching concept of autism into which - as an applied category within humanity - we fit. But this category is huge. And there is no single autism, no single autistic experience, no single "cure" even possible for autism.

For rather a lot of us, a "cure" would be a society not requiring us to play games, and ready if criticizing one of us for an error made, would be ready to actually teach us how not to do it again rather than curse us and walk off. A society ready to hear an answer when it asks us a question. A society that might accept a few non hatmful autismisms such as flapping or spinning without thinking badly of us or name calling.

Yes. I do understand that there are people more sevely hit by autism than I, but don't think that I have a minor case. I do not. My being and life is determined by autism. I face many negatives. Most could be cured by way of acceptance.

Autism Speaks seems to dwell upon the most negative aspects - a fear of autism based campaign to raise money. Good for raising money, but Autism Speaks' use of stereotypes hurts we who are autistic. It hurts our feelings, which we do have. It reinforces the purely negative public sentiment of autism.

And I fear a cure of selective abortion. Don't kid yourself, thay is a goal of genetic research. And we had better consider the ethical implications while this is a hypothetical prospect! If we wait until this "cure" is real, we have waited too long. Such a fetal test could make people like me extinct within a generation.

Further, all the talk of diagnosis, of disorder, of cures, it all does get noticed by the young and developing autistic person. That person is within a society thay regards us to be some sort of defective cancer on the human condition. That cannot do anything good for that person's development.

Look for a cure, Autism Speaks. But please realize that we don't evaporate at eighteen years. Realize that many of us turn out pretty well anyway. Realize that many of us would reject a cure, that we like ourselves as we are. And realize that just as there are things that simply should not be said about any other identifiable minority, that there are also things not to be said about us.

Don't hate this condition so much that you contribute to hate of us. Don't dismiss us. Don't dismiss our thoughts and feelings. Don't lump us into some single "autism" of thought or emotion. Don't work so hard to eliminate the scourge of autism that you add to the social issues that make our lives difficult.

Autism is huge. There is good and bad within. Mostly there are people within. We deserve some respect as humans. We deserve all the truth, including the fact that we are not all the same and that this "spectrum" is not entirely populated by persons suffering the most severe of conditions. We are not all self loathing.

Raise money and do research. But please consider the effects of your specific methods upon we who actually are autistic.

Seriously Make them laugh about what constitutes "normal". Make them see that perspective makes a big difference. For every image of a stereotypical autistic behaviour which they currently refuse to see as positive show them an NT enjoying themselves doing something equally "bizarre".

Now I'll shut up.

I won't pretend that I am emotionally involved with ASpeaks.

But:

You do not change by ignoring that which you want to change.

If ASpeaks would start wrecking havoc with what NicholasGray gives them about posautive attitudes, then it's all correct to signal a stop and withdraw. But without accepting the risk, nothing will ever change. Attitudes do not change by silently wishing for them to change but not facing the 'enemy': with an open and welcoming attitude to show them better. Not with a mirroring violent attitude.

It's just not working to demand change from others without giving them a hand.

Why would they change their attitude towards autism? A gun set on someone's throat a horrible way towards diplomatics.

I think that's currently pretty much all that is going on. Lashing out in defence and hurt and causing the other to strike right back also in defence and hurt.

Fair point, and that's partially what I meant. If some miracle happens and ASpeaks actually start's changing its motif and publish some of the more positive stories of autism, then i might reconsider. Unfourtunately, I don't see them doing that after the've been telling the public for several years about the quote "poor helpless autistic children" endquote. That would be metaphorically like in Harry Potter and the Order of the Phoenix, where the Ministry suddenly begins acknowledging Voldemort's return after telling everyone that this was a lie for a year straight. It would take some serious, unpredictable event for that to happen.

We can not be compared to anything. I agree with nutbag, autism is a dirty word. There are no two alike here. Some I feel closer to, but none are the same.

Autism Speaks lumps us as one, and picks the traits they want to use for shock value, and it is a fund raising machine.

Aspies and HFA's are rightfully proud of making something of themselves, in an imperfect world.

I agree with krex, I survived a time of no understanding, it could have been better, it can still be better now. I did learn, but now I am left out of the debate.

So taking the group, nutbag, krex, myself, we got by, there were some high points, but it could have been, and could be, better.

Just the word Autism oppresses us. Autism=ret*d.

As long as Autism Speaks is publishing their hate speach, we will suffer from it, and it stands in the way of understanding the true nature of things.

There are few groups we could be compared with. Most greatly outnumber us, the closest I coud think of are the blind. Mostly they are alright, good people, but they just can't see.

An organization of the sighted called "The Blind Speak," that calls for a cure, would be laughed at.

The Medical Profession has been working on blindness since Sumer. It is identified, lack of eye contact, treated, with a white cane, brail was invented, just for this little group. Some of them have comorbids, Helen Keller, some have been treated badly. There are schools, sheltered workshops, Lighthouse for the Blind, and they do get by in life.

It never took "Blindness Speaks." Or perhaps, "Blindness Sees."

Were I blind, I would want to hear from other older blind people about how they got by. I would not want someone preaching that they were going to be in charge of blindness, take all the money, and go sightseeing. I would not want blind childern taken over by sighted adults, who are new to the situation, self treating the first blind child they have ever known.

First we make sure there are white canes and guide dogs for all, education, and that practical knowledge is preserved and taught.

The Visually Impaired are not all alike. Some were born blind, some became blind, and some just have very bad vision.

Before Ben Franklin there were many who just needed glasses, but could not see well at all.

Well I am face blind, I have been told they do not all look alike, but that was late in life. It would have been a useful thing to know earlier. That not everyone read books would have been helpful knowledge, perhaps I would not have spoken of things they had no idea about.

I learned to deal with humans the old fashioned way, I hit them. It does get them to stop doing things.
Perhaps if I had understood why they thought they could behave that way, I would use other means.

Sora is a caring person, but Von Clozwitz? SP said, "War is diplomacy by other means."

Diplomacy is as good as your ability to back it with force.

Wrong Planet has at least become the worm in the Autism Speaks apple, and is growing.

Nicholas Gray, you seem a good hearted and caring person, but the only good side of Autism is we are still partly human.

Yes, there are scientific reserchers, professors, I think a lot of Doctors, but we are autistic. We do have impaired function. Not disabled in one sense, but lacking something none the less.

With twelve step programs for everything, we still cannot gather basic information. As krex mentioned, where is the hard Science?

I hear of treatment programs work, but they seem to be kept a secret. I have an interest and need for anything that works. I am smart enought to adapt it to my needs and age.

Autism, what it is, what is being done to improve lives, would be a good film.

There are other venues, Public Television, according to EvilKimEvil, Autism is found in other species, and not just hominids. This is Science Channel material.

That it can be found in our rodent ancestors, says cure is out of the question.

It is not a good-bad fight, it is a thing in Nature to be understood.

To be honest, you should include an unbiased report on the Autism Speaks point of view. I do not think they could be seen as other than uneducated wishful thinkers, with other issues. They are not evil, just people, which often seems the same.

The same goes for Wrong Planet, we want to see ourselves as better than we are.

75% of people think they are in the top 25% of people. 90% are grouped around the 50th percentile. IQ 100.

This is one deranged species of apes you are dealing with.

Autism is only a differance, insanity is common to the species.

And insanity is the correct response to an insane world.

Good to see you again Inventor, as always, a voice of reason and thought.

And those were some very good thoughts reasonably put across.


I think half the problem is AS's continued use of the word cure, and little understanding of what that means in relation to autism. They don't seem to understand that you are born with autism, and will die with it, all that can be done in between those events is to assist people with one kind of mind interact with those of another.

I think a lot of people going to AS are a little ignorant of the limitations of neuro-science, and what it means to truly cure autism. They see all the things science can do, and aren't aware of it's limitations, so think a cure is just a matter of time and money.

You can cure a viral infection, or a disease, but you can't cure blindness (of the kind you're born with), or autism, you can only treat them, working around them but never eradicating them.

Autism is a difference of the brain, as science has proven by looking at autistic brains and comparing them to NT brains.

Neuro-science cannot simply rewire a brain to work in a different way, and the primary way a brain processes information is through the way it's wired electrically with neurons.

It's a fixed structure as far as the surgeons are considered, they can cut bits out to stop things working, but they can't add new ones, as they're far too complex to make.

Chemicals can be taken that affect the brain as a whole, that affect mood, or increase/decrease activity, but they can't be targeted at areas of the brain, or somehow cause it to grow into a different form than the one it took several years of growth and experience to develop into.

Science has 'cured' Down Syndrome, not by treating people who have it, but by looking at embryos before they develop, and aborting the ones with Down Syndrome. Because of this no-one has a reason to look for a cure for people already living with Down Syndrome, if by some miracle it could be developed.

Any money that goes towards a cure is money taken away from treatment that could actually make people's lives better.

The hope of a cure may delay some people from seeking out early treatment for their children, that could make a huge difference to their lives.

I don't see why low functioning autistics can't become higher functioning, except that while their brains are doing most of their development during childhood, their sensory problems stop them from taking in anything meaningful to learn from, so they end up not developing as much as they could.

If their sensory issues were better understood, and treated so they could interact more with the world, they may stand a better chance of gaining basic skills, and building upon them.

That's not going to happen while trying to make someone live in a world they can't learn in.

Other than very, very few specialists in the field, that vast majority or knowledge and experience about autism comes from the people who have it (seeing as it can become an obsession for a while for some of us, beyond what the average doctor is able to study).

Autism Speaks is encouraging parents of autistic children to put more trust in what their family doctor says - who probably has less understanding of autism than the average diagnosed 5 year old with A.S. - than the autistic community of people who have autism, and successful parents of autistic people.

Too much faith is put in medicine, when all that is needed is the right support from a community of peers.


We don't need to be taught how to be NT, and cured from being autistic, we need to be allowed to be autistic, because it's not something that can be changed, and taught how to be autistic in an NT world.

At the same time NTs need to learn how to live in our world.

Inventor, you analogy of blindness is excellent.

Also just because neither NTs or people with A.S. can talk to people with LFA, doesn't mean to say people with A.S. can't understand people with LFA more than NTs.

I think they may actually be envious that we are in some way closer to their children than they could hope to be, which is a shame, because it's a barrier.

They're not going to learn much about autism from other NT parents and doctors, no matter how organised they get.

They will have to step into the rather scary world of thinking like an autistic person.


If we can show them that some autistic people aren't so scary/weird, they may be more willing to converse with us.