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If nothing else people can look back on this exchange and not make the same mistake of thinking that this poster might have something useful(information wise) to contribute to a thread that is about Autism Speaks.

An excellent list. I would add that with AS's proven ability to strip mine the lion's share of many communities' private donations for autism, comes the lion's share of responsibility to improve the lives of autistics in those communities. This includes adult, children, vocal, non-vocal, sheltered and independent-living. When I see Autism Speaks speaking for ALL autistics, and with a more autistic voice, I'll be more impressed.

Nihil de nobis sine nobis

You just can't seem to resist - when someone presents a button you just seem to need to push it.

It's a shame, I think she did have something valuable to add to the conversation. Unfortunately, she seemed to be speaking from a very emotional place and I think she may have been overrun by an unrelenting group of uber-rationales.

There seems to be this belief that charities need permission to do the work they do. I do not recall the poor and impoverished in South America and Africa being polled as to their views on how donations to any one of the various charities that do work in those countries spend that money. If as a private citizen I want to spend my money to build a well in an African village then, that's what I'll do. If all the villagers tell me they need guns to protect themselves, and medicine, and a new school - not just a well, I'll take it under advisement but my only goal is the well. One organization can not be everything to everyone.

Yes, Autism Speaks has make some pretty major mistakes. They are actively going out and finding donations - they are not 'strip mining' donations. The donations they raise most likely, would not have been there in the first place without their active advocacy efforts. Yes, much of their vocal outreach has been extremely controversial - I'm pretty sure they fully recognise that now since their own UK chapter cut ties with them. They pulled their video. I'm unsure of they pulled the 'I am Autism' campaign but I know I haven't seen it actively advertised in quite awhile. I think they may finally be learning that they are suffering from a major disconnect.

I don't have a problem with most of the things listed there because I don't think they present a negative impact to autistic people if they were accomplished, but I think I have a reseasonable question on a couple that you might be able to answer since you are involved in an organization that is pro-assistance for autistic people.

On item 4, for children that do not have the communicative ability to consent to social behavior therapy, should they receive no social behavior therapy. Example, when a child is repeating self-injurous behavior; what should a parent do?

On item 7, is it not necessary for some autistic children to learn appropriate behavior to be able to mainstream into the world. Do they need the opportunity to be able to learn to follow rules that will keep them out of harmsway, and learn social skills that will allow them a better opportunity to meet their potential in the world.

Do you see the suggestions in items 4 and 7 as suggestions that should be refined to meet the needs of some children with Autism.

I am also interested in hearing about any new initiatives that ASAN has to assist Autistic people in their day to day lives if you would like to share them. And in the specific ways that the mission of ASAN is unique in helping people with Autism.

I haven't heard much here except that ASAN offers awareness of neurodiversity issues and offers support groups. That is also what I gather from looking at the website but am interested if there is anything new coming in the near future.

And, I agree with you assessment of Autism Speaks and also would like to see positive change there. I believe that the efforts of the owner of this website and John Robison are a start in the right direction. You sound like a very reasonable individual.

Finally, do you see see language like Autism Speaks is a Na** organization, they hate autistic people, they are an evil and corrupt organization, they are an organization that harms autistic people, and are an organization that will lead to the killing of Autistic people as constructive ways to foster positive change within the Autism Speaks Organization?

I took both 4 and 7 as referring to several types of training that either focus primarily on making a child as "normal" as possible (such as the Rotenberg electrode method which employs aversive conditioning, even prophylacticly, or some ABA methods that use negative aversives) or training that tackles painful things like eye contact or the complete repression of stimming while neglecting helping students and their classmates develop mutual coping techniques toward understanding and cooperation.

If there truly is a focus on helping the autistic "meet their potential," and not primarily on teaching him or her to change to normal, or hide, I have no argument with helping an autistic learn as much as possible about themselves and the world they'll live in.



ASAN Iowa is a new chapter. We have done some letter-writing and speaking, so far, but are really just starting to form a group of advocates in Iowa. In the next month or so, we will begin having meetings aimed at gathering advocates together to help educate lawmakers, service providers and others in Iowa. There is a pressing need for this as Iowa moves autistics into community living, and as educators and providers learn that "autism" is not as simple a label as we all once thought it to be.



Being an autistic myself, I tend to look for the motivations behind speech before I believe I understand. In most of this thread, I've seen interplay between fear and anger. I will say one thing about Autism Speaks that I'm not sure they'd completely disagree with: they scare people. We can all disagree about which part of it is scariest but, since fear is how they butter their bread, I have to assume they understand how frightening they can appear to autistics.

Most of us would admit that there are aspects of autism we could do without - both from inside us and from those around us who'd prefer we were absent - but we find it hard to imagine what a "cure" (AS's primary reason for existing since its inception until, apparently, recently) would mean. The perspective of many, many people - well-meaning or not - seems to be some magical eraser that simply makes us "normal.” Like fixing a Bad Drawing by just removing it and starting over with a blank paper. I'd like to ask all the "normal" folks: would you willingly have yourself erased? Or even trust someone - who obviously finds you defective - to delicately rub out only the parts you both agree need fixing? And even if that would some day be possible, will the fixers wait until the tools are perfected, or will those who judge us begin with the axe, lacking the patience to wait for the razor to be sharp?

Autism Speaks is a large organization. It's not surprising that those of us who have had to struggle just to become part of the small world around us find AS to be a bit daunting. It's hard for us to believe it feels love for us - especially when it uses us to scare the public over and over again.

Therefore, I tend to give latitude when the undesirable express themselves.

It's not that I'm emotionally detached. The stakes are huge. If anything, my own awareness of my emotional investment in this issue makes me hyper aware of how easy it is to be irrational. Autism messed me up. It is at the root of my greatest difficulties. I do not suffer lightly blanket generalities about what is best for me to think when I've been told what to think for all my life.

I wish she had given me something more to chew on. I really an interested in how the Autism Speaks conundrum evolves. Maybe I shouldn't have gone tit for tat with her for so long. It's a personality flaw, I guess.

Very interesting, and I too don't particularly like aversive aspects of behavioral modification techniques, unless it is the only therapy that works to prevent more serious injury to a child.

At your age, you obviously were not diagnosed as a young person. Are there any unique, effective means to cope with Autism that you have found in your experience of life, that might be useful to others, that you would like to share?

And finally what are the best ways for Autistic people to influence Autism Speaks to make the positive changes that you see that are needed. Should they align themselves with organizations like ASAN to influence change, or try to do it on their own?

I am not involved with ASAN, but I will give you my response too anyway, it may or may not be of interest to you.

As to item 4 - I would not see trying to avoid self-harm and meltdowns a social behaviour therapy. The key thing is the goal of the approach. Therapy should be aimed at preventing self harm because self harm is harmful to the person, not because seeing someone self harm is distressing to others. Meltdowns should be avoided because they are harmful and draining to the autistic person in question, not because they embarrass the parents or mean they can't do stuff. The approach should be focused on trying to understand WHY the autistic person experiences these things and trying to avoid things which cause them. An approach which uses operant conditioning (rewarding not having these things and punishing having them) should not be used, nor should professionals try to increase what an autistic person can tolerate in terms of sensory input/ whatever unless they are capable of communicating consent, and are of an age to give it. Often these sorts of things seem to be used to justify therapy which 1) Wishes to avoid these things to make life easier for the "whole family", which is the wrong way to look at it and 2) Seeks to change a lot of things which only affect people around the autistic person, not the autistic person themself.

I do not oppose the use of operant conditioning therapies to achieve functional language/communication, provided communication via electronic devices is considered equal to spoken communication, and provided forms of communication which are not recognisable as language to most people are understood to be communicative and not pathological.

I oppose any kind of approach that uses restraints or restriction on a person of any age.

On item 7 I do not think it should be necessary for autistic children to learn any kinds of social behaviour unless their behaviour is potentially criminal (such as stalking, grabbing, etc). If they are distressed by being socially isolated and WANT to learn those things, then teaching should be offered. But that should not require operant conditioning as they would be motivated to learn.

As to whether rhetoric is helpful. I think it is both helpful and necessary. Autism Speaks is an organisation that contributes to the harming of autistic people and, if they are successful, will lead to the killing of autistic people through mass abortions. The fact that they also fund some things that are good does not even begin to cancel that out. They are currently worse than nothing. It would be better to not know that autism exists than it is to have organisations like Autism Speaks. Unless the changes I have suggested are made in terms of dropping genetic research, dropping unethical therapies, and dropping the negative advertising campaigns and apologising for them, then what they are doing is the equivalent to coca-cola taking the water supply out of a dehydrated third world country and justifying it with the fact that they sell the coke back to them for a lower price. The fact that this is unintentional doesn't seem to me to be much of a defence: if you are running the biggest Autism charity in the world, you should understand the ethics behind the treatments and research you are funding well enough to not harm the people you are setting out to help. Something doesn't have to be intentional to be unforgivable. In my view, it should result in criminal penalties and jail sentences for a lot of the current staff, including the founders, and I don't think "Autism Speaks" could continue as the same organisation either in terms of brand or in terms of people and get to a point where it helps Autistic people.

Last edited by Louise18 on 17 May 2011, 8:09 am, edited 1 time in total.

Actually, I don't have a lot of interest in changing Autism Speaks. A lot of energy and resources are wasted every day trying to change the minds of people who feel they have the only valid perspective. It's even more difficult when there are large amounts of money involved. As long as we do our best to mitigate any truly dangerous actions, like nationally distributed scare campaigns or pushes for legislation that elevates bad science at the expense of good services, I feel our focus needs to be on state, local, and individual issues. For now, I have my hands full with Iowa affairs. Still, it's also very important for people to know that alternative views exist, and that the conversation is important. ASAN, national and state, provides a crucial balance to the medical-model view of autism which, if left unchallenged, logically creates a system focused soley on mitigating symptoms.

There is much, much more to autism than symptoms. And, whether or not you believe autism is curable or should be, we can't afford to leave everything else to chance while we spend all our time and money on trying to make autistic people look like non-autistic people. It makes more sense, right now, to teach autistics how to maximize their possibilities and the public to accept difference as normal.

Now this is more like it. This puts the conversation into a place I can wrap my brain around.

I'm not sure that efforts to modify Autism Speaks' policies and philosophies should be of little interest to ASAN and others if only for the very practical reason that they pull a disproportionate amount of donations out of the system. If a donor gives to Autism Speaks, wouldn't they be less likely to give to other organizations? Changing that dynamic would be more difficult than getting Autism Speaks to make adjustments in their organization's ideologies. It is analogous to the old Beta v.s. VHS video tapes. Beta was argued to be technically superior to VHS, but VHS grabbed the market before Beta and once that was in place there was no turning back. Autism Speaks "owns" the public space, so to speak. It would be very difficult to supplant them.

Actually, let me be clear. First, I was speaking about my own perspective, primarily. I have smaller fish to fry here in Iowa. Fish I might actually get into the pan. Trying to change Autism Speaks into a patient centered agency is way out of my pay grade. Second, you are absolutely right about AS's impact on donations. And one of ASAN's functions is to try to educate the public that there are other more immediately helpful areas in which to invest. But ASAN is not defined by Autism Speaks. ASAN is not simply the Opposition. When I meet on the Iowa Autism Council, there are staunch AS proponents there. When we work together to evaluate community services, or school programs, or adult programs that lead to employment, we all work together like professionals focused on the task. On the day that someone proposes something that clashes with the dignity, civil rights, or safety of autistics, I will certainly have a louder voice, but I'm interested in success, not victory.

Of course, this all assumes the same level of respect from my co-workers, which, so far, has been happily forthcoming.

Frankly, I think some of this will resolve a bit as the children of many of the parents involved with AS grow up to be autistic adults and start to demand autonomy, dignity, employment services and civil rights. But, in the meantime, we must continue to speak truth to those who will listen.

This is an important point. I've had a great deal of trouble with some of the heat regarding ASAN, Autism Speaks, etc, etc. I feel pressure to "pick a team" and join the fight. I suspect, and as I learn more am having that suspicion confirmed, that the issues are more complex than the outward facing rhetorical displays.

Thanks for posting. Your cooler head helps shed light on some of my questions.

I still maintain a parent wants what is best for the child in most cases, and that is a priority over what makes it better for the parents. Obviously, it is best to try to figure out what the underlying cause of a meltdown or self injurous behavior is, but in the case of self injurous behavior, a parent is not always able to manage that without somekind of outside help and therapy. It doesn't necessarily have to be an aversive form of ABA. And it doesn't necessarily have to be ABA at all.

And, again in regard to therapies, Autism Speaks provides awareness of many; they don't require or fund the ability of parents to use any of those therapies, it is just an educational resource. There is nothing unethical about educating parents of different widely used therapies available.

It would be nice if the whole world would accept individual difference, but it never will; humans are hardwired to reject what is not seen as within the norm. Some overcome this tendency with conscious understanding, but some will never make this effort. Understanding and better awareness and acceptance can be achieved, but we will never be able to change what is hardwired in human and animal nature.

Some type of adaptations are required for Autistic people to survive in the real world. And, reasonable social skills can be learned; it's not easy and it takes it's toll, but so do many other adaptations that other people with disabilities have to perform to survive in life. I'm not saying that ABA is a requirement here, I personally made all those adaptations without out it, but If I had not found a personal way to make the adaptations there is no way I would have survived or been accepted in the world on my own.

I did not have Aspergers, I had a developmental delay from childhood; my challenges are not the same as others as many other peoples challenges with Autism are more difficult than mine were. Some, Autistic people, cannot adapt, and will not be able to mainstream into the world, that is just a cruel reality of life, as with many other disabilities both mental and physical.

It is likely that Autism might drop the search for a cure, if the country, at least in the US, focuses it's attention away from a cure, but that is not just an issue on Autism Speaks plate, the government and other organizations strongly support a cure; there is no logical reason that they are going to change that direction as long as the majority of the public wants the research.

There is evidence that they are changing their advertising campaign. There is never a harm in apology when someones feeling were hurt by an action. However the same campaign received positive comments from others that could relate to the emotion of sadness that goes along with the difficulties of raising any child with severe difficulties. Parents are not robots, they are humans, subject to frailities of their own.

All of these things they do are not accepted by the minority that see a change as necessary, but while these actions may seem criminal to a few, they are accepted by the majority of people including, at least the government in the US; those people certainly don't see what they are doing as criminal in nature.

1. Just because parents want what is best for their child doesn't mean that they know what is best for their child, which may not be aspiring to have them become more NT. Also, sometimes parents have more than one child and might not understand that it is much worse for child A to be forced to go to the playground than it is for child B to miss out on going to the playground. Also, parents often do things when under considerable stress that are harmful to their children to make their own lives easier-that is why we have an obesity epidemic.

2. There is something unethical about endorsing unethical therapies, even if they are widely used.

3. The world does eventually come to accept specific types of weird if the people who fall into that category lobby hard enough. The LGBT movements is an example of how rights and acceptance can improve in this area.

4. I have never, and will never go out of my way to adapt socially. There is ALWAYS something more useful I could be doing with that time. I have had wonderful educational opportunities and study at the most prestigious university in the country. I wouldn't have been able to achieve that if someone had been wasting hours of my time and emotional resources teaching me to please others (which would likely only have made me deliberately do the opposite anyway).

5. I am not interested in opposing a "cure" properly so called, because I don't believe that one will ever exist. What will exist is abortion, and as soon as that arrives, funding will dry up for research, and the majority of babies conceived with autism will be killed. I am also opposing the "treatments" that are unethical for the reasons I outlined above. My problem with a cure would be the possibility that it would be forced on people unable to consent. But, that is something of a moot point since what AS mean by "cure" is really abortion.

6. You are responding at cross-purposes. I am saying "This is wrong", you are saying "It has public and political support and that won't change". I know that. I don't understand why you keep repeating at me something I am not disagreeing with. I know how the world works. It's still wrong.