"Autism Speaks" Response to Autistic Input

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Autism Speaks has a new website that has sections designed specifically to help Autistic Adults with life and workplace issues. They are also promoting new programs to help the Adult Autistic Community. They also have a huge database of resources available now to help Autistic people and parents of autistic people find needed support within their communities.

The image of Autistic people on the new website is one of positive enthuisiasm and smiles.

The research they are funding now is leading to the understanding that environment plays a larger role than genetics, making the potential for an accurate prenatal genetic test much more unlikely. And, potentially leading to the identification of environmental factors that may eventually lead to the reduction of the more debilitating symptoms of Autism, as these factors are identified. Imagine the potential for these children without the more debilitating symptoms of Autism.

Looking at their new website and initiatives from an objective point of view, I see some of the criticisms that have been voiced here answered by positive changes.

Please look at the link below, and if you will provide input in the poll or by comment if you actually see progress in this direction.

If you think they are moving in the direction, that has been asked for, and making a serious effort to answer the legitimate criticism of the organization, that has been voiced within the Autistic Community, it could be worthwhile to send them an email commenting on what they are doing better now, and what other improvements they can make to provide a better quality of life for all those that are Autistic.

It's a positive move into the future; it could be possible that the organization could eventually be one that most Autistic people see as a positive contributor as not just a source of information and research, but as an advocate for Autistics also.
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http://www.autismspeaks.org/news

The social punching bag no longer being a punching bag might shock some social-political cliques. Political advocacy life after the Autism Speaks socio-political exorcism might be boring? I'm wondering if these groups can stop whining at each-other and do more together. If not the few that really create change shouldn't even bother with conflict resolution as long as people are being compassionate and reasonable. Autism Speaks has created more progressive change and progress while not being drama orientated then those that whine. It's easy to hate and hard as hell to avoid it. It's time to look to others for progress and change for inclusion and otherwise or not bother with them. To much is at stake over combating silly words and focusing so much on drama.

Bit of tough love and a reality check about the state of autism in society. It's time for progress and not destructiveness. It's time to do things that in the past have never been tried and or to achieve similarly as other social, cultural and equality movements have in the past. The decisions this generation makes to move forward will change the future or not for individuals with autism and alike disabilities.

I wish there were more poll options. Personally, I've thought people were being overly negative to Autism Speaks for as long as I've know who they are. No, I don't see a change (based on the amount and length of time I've been paying attention), but I can't vote the 2nd option because that would be like a vote for "they're as bad as ever", which certainly isn't my viewpoint. I guess I'll have to visit this thread when not logged in to see the poll results, since there's not even a "show me the results" option.

Sorry, I didn't take that in consideration. I've never seen a problem with the website in relationship to the specific mission of the organization.

The two legitimate areas of concern I have seen in the Autistic community, is that the organization wasn't doing enough for people that already have autism, and presented it in only a negative light.

In looking at the website in the 5 months I have seen it, I've never seen a particular negative light however, it hasn't been one of optimism either. I have no idea what it was like 2 to 3 years ago when the NT speaks issue, the T-shirt issue, and negative ads, were a major topics of problems within the organization.

If you are new to the website it does two things differently: it shows enthuisiastic happy groups of autistic children, parents, and others interacting in positive ways, and it has areas on the website clearly dedicated to adults with autism and their needs in the workplace, needed resources, and initiatives for programs to help them.

The prenatal test has been a political issue; while Autism speaks has clearly indicated that their hopes would be that a genetic prenatal test would allow intervention to prevent the more disabling impacts of Autism, others have taken it as a statement they would like to eradicate autistic people through a prenatal test and abortion. That political issue will never die as long as the push for a definitive genetic cause for Autism was thought as a potential reality.

The objective research that Autism Speaks has funded is leading in another direction now towards environmental causes rather than a sole genetic cause, so the political fears on this issue don't warrant the concern they did in the past. Without a specific prenatal test for Autism, there is no longer any realistic fear that all potential Autistic people will be aborted sometime in the future.

While the objective research that autism speaks could have led to the development of a genetic prenatal test for Autism; it did the opposite, the research has come close to proving that a definitive prenatal test for Autism is impossible.

The poll results so far are 5 opinions that they have made the positive change and 0 opinions that there is no change.

The last I saw the website of Autism speaks was before the new design came out in June. I see the majority of the improvement that addresses the legitimate criticisms that have been expressed here in the past, as being addressed with the new website.

In the old website it was hard to even find the section describing Aspergers. It's on the first page now. While this is important to people that have Autism, it is also important for people in the general public going to the website only looking for the more severe issues associated with Autism; now it is easier for them to gain greater awareness of the difference of the symptoms between Aspergers and Autism.

These are the specific areas of improvement I have noticed with the design of the new website; I would be interested to see if anyone has noticed any others. But, you bring up a good point, it's likely many haven't even visited the website and their only understanding of Autism Speaks is what has been presented here. There is usually no distinction here when criticisms of the organization are presented, that the issues were resolved years ago, and some of them were simply misunderstandings.

I think if one were to go to the website now without any preconceived notions about the orgnization, it would be seen in a very positive light by most people. There is too much good they are doing there for Autistic people, I'm not sure how anyone could miss it now.

In the future when the same criticisms come up as they did in the past, the simple answers will be there were problems in the past that have been resolved, check out their website and make your own opinion if they are doing good things for Autistic people in their current state as an organization.

As a critic of Autism Speaks and an advocate of neurodiversity, I do get what you're saying and I acknowledge that there has been some change in the organization's public face. But I also think you're overstating it, and that we cannot evaluate the organization simply by looking at their website. What's most important to me is what the organization does, not what it says, and I still don't think they've seriously considered what autistic advocates have said. Here are the main criticisms we have of Autism Speaks:

1. The organization runs public relations campaigns which dehumanize autistic people.

This hasn't really changed significantly, IMO. While there hasn't been a campaign as egregiously offensive as the "I Am Autism" video that appeared two and a half years ago, Autism Speaks still runs ads which are problematic. Lines such as "more devastating than cancer, diabetes, and pediatric AIDS combined" and "more likely than being in a car accident" are still in their lexicon, and many of us strongly object to this.

2. Autistic people aren't involved in the organization in leadership positions.

This is still mostly true as well. While there is now one autistic person on the scientific advisory board, he is one of 30 or so and there still are not any autistic people on the main Board. So this criticism is still valid.

3. Very little of the money Autism Speaks has is spent on providing services for autistic people, particularly adults.

Again, this is still valid. To the best of my knowledge, Autism Speaks still devotes the vast majority of its funds towards science and "awareness" campaigns, not services. From their own materials, they devote 4% of their non-overhead expenses to services. This is miniscule, relatively speaking. Also, I have doubts about the practical utility of the science they fund in terms of improving autistic people's lives right now. They have recently made available a searchable database of their research grants.:
http://www.autismspeaks.org/science/grant-search

I have looked through this list, and while I won't say that none of these studies are of use, I do see a lot of money going towards studies of questionable (IMO) value. There is a lot of genetics research being funded, a lot of causation research, and a lot of studies involving mice, flies, and moneys. Is this helping autistic people right now? I doubt it.

I additionally think there is a problem with Autism Speaks misleading donors. They advertise themselves as "helping families" when in reality, very little of their funds go towards services which help families and autistic people. Granted, this is also the fault of people who donate to them without doing their research, but I still feel that the organization's approach is not entirely honest. Moreover, I think that the fact that this organization is increasingly monopolizing autism charity dollars is a cause for concern. Autism Speaks is developing--or indeed already has--a monopoly over the representation of autism, autism science, and autism charity money. This is worrisome. There are plenty of autism charities who do good work, but how many of them are struggling while Autism Speaks becomes ever-more richer and more powerful? These questions need to be asked. We should not uncritically support them just because they are the biggest organization.

So, in conclusion, I do not see significant evidence that Autism Speaks has, in fact, addressed the concerns of autistic critics. Their presentation may be somewhat more amenable now than it was...but changing words on a website are cheap. Changing policies and priorities is considerably more difficult, and there isn't much evidence that they've done that. Until that changes, how are we supposed to believe that the organization has truly changed?

And BTW, I believe they've always had some information on Asperger's Syndrome on their website. That's not new.

I think the question you ask is a worthwhile one, but we can't just rely on their website to make these judgments. Of course their own website is going to make them sound wonderful! But we need to look at what they're actually doing (and not doing).

I didn't state the information was not available before on Aspergers, but that it was much harder to find on the website before

1. I've heard these analogies from other sources for years, so they are repeating opinions that others hold; a reflection that those other conditions can be treated but some with Autism never have the opportunity to live a functioning life. It's a marketing technique to emotionally motivate contributions that is common among charities. I saw the I Am Autism Video as dehumanizing, but they took corrective action to remove it. The're not going to be able to completely sugar coat the condition and expect to motivate people to donate. However, since you see it as dehumanizing, it would be a worthwhile effort to give them that opinion as I suggested in the opening post.

Their website is a major source of information for the general public, it's where many people will gain their first impression of Autism. The impression there is a very positive one for Autism and a real change for the good, although I respect your opinion that you don't see it as a significant one.

2. John Elder Robinson is a significant addition, it's a move in the right direction, I agree that more input from autistic people will be a positive improvement; a good reason to let Autism Speaks know that you would like to see further improvement in this area.

3. Their main focus and mission has been on a cure; the majority of the money is being spent there. The website presents useful information for adults with Autism, and the organization is powerful in influence in legislation that my bring greater funding from government sources for the Adult community along with the research they are funding related to this. There is additional room for improvement, and if you think they should fund adult community services rather than the government, this would be another good comment to suggest to them.

The people that do financially support Autism are in agreement that they are working to create the results that those that support them want to see. If those that supported them did not feel like they were meeting the mission that they see as necessary the support would evaporate. There is no misleading here, the facts are not hidden; they provide them on their website in their annual reports, for all to see.

There is always room for additional positive improvement. If it was up to me I wouldn't run the Cancer, Diabetes, and Aids, add, but I see the car statistics as harmless obvious statistics, that anyone could figure out for themselves, if they took time to think about the numbers.

I don't see a problem with any of your criticisms, they are presented in a respectful business like manner; this is the kind of thing that Autism Speaks needs to hear presented to their organization so they will continue to understand that more improvement is needed.

Interesting that you support the neurodiversity movement; just out of curiosity if you don't mind, what conditions in the population do you feel are neurodiverse? I've heard so many opinions on this, that I question if anyone even knows what neurotypical means anymore.

Also, do you feel better about the environmental direction that research is taking us now. The genetic prenatal test for Autism has been a huge factor here for people in their criticism of Autism Speaks; I always felt like that was the most unfair criticism on the organization that they would be responsible for autistic deaths because of their research. It appears that instead the research is heading in the opposite direction. Has this been an issue for you?

Autism Speaks isn't going anywhere, they continue to evolve and improve their organization. They aren't standing still, if nothing else the website provides a report on what they do and what their accomplishments are so people can make their own judgements on whether or not to support them or to offer constructive criticism to the organization.

I think it's to everyones benefit to continue to offer them constructive opinions on how to improve. The more they hear it, the more likely they are to make continued improvements. The poll results though small, are encouraging considering the environment they are taken in. I'm actually surprised that no one voted the no change option, it at least shows that everyone so far is looking at the situation from an objective viewpoint, that cared to vote.

If as a community the autistic community can see them as an organiztion that they want to see improvement in rather than one they want to see fail, it's to everyone's benefit if they continue to make the changes seen as significant, to try to meet the needs of everyone on the spectrum.

1. Many of us would only denote those of and within a certain social clique. When in fact most with autism have yet to voice an opinion and those that agree are called Nazi's, curebees and are out right bullied socially. So they can tend to hide away from being involved in some factions of self-advocacy movements.

2. Properly perceived in context autism as a disorder label is about the negatives one experiences such as in the DSM. Impairments typically one with a disability would want to correct or should be allowed the choice to correct.

3. The right to treatment supersedes the right to the dignity of an opinion. Each side has their opinions and those that would like to be cured experience indignity by those that do not choose cure at times. It is common societal and cultural practice not at all limited to Autism Speaks to creatively and emotionally express the hardship side when in context to "treatment" advancements. Where it does go wrong is outside of the modality and intended projection of treatment rights and advancements. Individuals with autism have the right to have expressed the hardships of autism in the most creative ways imaginable to assist them in the fight against hardship for said purpose of treatment advancements.

4. Imagine you wanted treatment to advance and what could help advance it others are trying to take away by making unlawful or unethical certain modes of expression. You got to see the other side of it. I understand the frustration with depictions in context to treatment advancements but they are little different then that of other treatment pursuits for other disabilities.



1. Some are. However as with a variety of individuals with autism including myself there is an extreme hyper-focus on interest. My focus is on employment development and that's what I am constantly focusing on. Autism Speaks does not have to submit to a single form of advocacy just because overall some individuals with autism do not believe in treatment advancements said as a cure which are not to their agreement.

2. Self-advocacy organizations like ASAN are closed policy groups as well. They advocate only a certain ways and do not allow open voting or debate on it's macro-platform either by a diversity of self-advocates. There is a difference fundamentally between treatment awareness and that of inclusion even though they can effect one another.



Autism Speaks is not a organization with primary focus on social service funding. Research can enable better treatments when chosen that are intended to positively effect a person. There are many ways to help families and the outcomes of programs other then giving them money directly. I do believe there are avenues by which to cross-platform work together more for societal change and while doing so raise base monies for necessary supports and while doing so combining already received government social services funding. It would be quite the attempt but with so many political sensitivities and agendas it could very well be a larger problem in the making.

I must be thick skinned, nothing Autism Speaks said ever bothered me.

Raising funds for scientific study takes marketing.

What they did with those funds does concern me, and unlike other charities, they have spent on scientific research, and advanced knowledge.

Both Genetics and Enviroment are gray areas of knowledge.

While they are limited to funding research, about something they do not understand, no one does, research is not grant funding specific, it is chosen to broadly advance knowledge.

It is not the Genetics of Autism, it is Human Genetics, with all of it's odd edges. What they are funding is likely to produce a cure, for some non related conditions.

The EPA was formed because some legal chemicals were shown to be killing us. DDT, Lead, Dioxen, many others, were considered good for the economy. The strict standards imposed were based on provable deaths, and allowable exposure. This was the Toxins view, and that is how it has been done for forty years.

There were no Genetic studies, for there were no Genetics.

Environmental agents that can cause genetic mutation have been studied, Fruit Flies, but unless extra legs were produced, the agents were deemed safe.

There has been EPA creep, where exposure limits were raised, and the standard was, exposure cannot be proven in Court to have damaged those exposed. A Legal Standard is not useful, for known harmful agents were once Legal.

What would not harm a person, the Legal Standard, may harm new life forming. It's supply of elements comes directly from it's mother. Legal Toxins are judged by parts per million, and is very different for a few cells growing into another person. The mother is a million times as large as the Embryo.

This is going to be a hard one to prove. The Fresh Lemony Scent in dishwashing liquid, is a chemical aromatic, that goes directly into the blood, causes no harm to the mother, but does mutate the Embryo.

How do we prove it? Expose Embryos? Raise them, and see what happens? Autism does seem to show in rats, but nothing yet on Aspergers rats. As the DSM is based on talking and written tests, rats are useless.

Our genetic knowledge is shallow. Studies on eating done in Scandinavia showed that famine years affects the population five generations later. It was not a direct curve, but it was proven that famine did produce genetic changes.

It could well be the grandparents were exposed, to something, them, their children, were not affected, but the next generation was. 1950 to 1975 was exposed to Tetra Ethel Lead from gas. It is known to ret*d mental development in children under five. It is also known to stay in their system.

Lead was removed, the study ended. Now the Leaded children have grown up, had children, and I have been in schools. Children are different than my school years in the fifties. We lived on sugar, but the current crop are hyperactive in body, mouth, mind. Something changed.

Autism is the tip of the iceburg.

What has happened to the enviorment cannot be undone, chemicals that the human body has no way to excreat are building up, children are different, compared to a baseline going back hundreds of years, when records were kept with quills.

In Scandinavia, they dug up five generations and did genetic tests. That was compared to climate records, historic records, medical records, and a pattern showed.

Autism Speaks research is heading in that direction, a multi generation study of changes in the Human Genome.

By the Scandinavian study, this still has three generations to come. The famine generation recovered, their children were a bit stunted, the result happened in the next three generations, who ate well, but were affected.

It cannot be undone, but we can prepare for change. First we have a lot to learn.

"We have met the enemy, and they is us." Pogo

All the individual elements FDA/EPA tested and approved. But I think we have little to no understanding and little potential of understanding the effects of the synergy of all these individual elements.

It reminds me of all the different genetic markers and environmental links found for autism; thousands of potential avenues for an answer, but apparently a synergy of effect. We've got a lot to learn, but I think given the human contribution to the environment as a whole, the synergy is almost impossible for us to grasp as to the long term impact to the human condition as a whole.

We are all unwitting guinea pigs of our own making. We always have been, but now more than ever.

I'd like an intermediate option - they might be changing a bit in the right direction, but I'm not sure whether it's real or just a trick to get us to stop complaining about them.

I agree with the salaries arguments. A local autism specialist told me Autism Speaks including most non-profits can pay to much money for their salaries. In my opinion just causes attract qualified and passionate people and not always at great expense. As far as the cure and research into causation debate that's a human rights issue. Individuals with autism have the right to be creatively represented toward the public to garnish the attention needed to research for potential quality of life improvements. The modality of treatment advancements differs from that of individuated inclusion and I think the autism spectrum terminology will further clear up misconceptions in the public sphere. No one has the right to remove the expressions of the hardship of autism for the said purpose of the human right to advance progress for treatments with potential individual cures for symptoms.

The I am insulted politics with their agenda's cannot evade fundamental human liberties. Instead a macro-cultural approach with regards to (developmental) disabilities with emphasis on inclusion should assist in the needed dignities arguments. How can treatment advancements which are protected liberties best be served if within culture and society one must be creative enough to get their attention to support those rights thus the depictions for instance in the "I Am Autism" video which has been censored and I cannot explain with the example underlining societal anxieties to outline the projected strategy. Instill an urgency to resolve hardship while it can be improved by means of treatment can also be done with progressive inclusions. Ultimately the video went to far but the highlights of the rationale should not be censored.

^This^

When Autism Speaks finnaly stops looking for a cure to begin with, then I'll think about withdrawing my statements about them being neo Nazis. If they truely want to help us, they'd be giving me a scholarship to Cornell College of Veterinary Medicine. Not that I probably want to go to that particualr school but aparently it's the crème de la crème of vet schools and if Autism Speaks truely wants the best for me, they'd be offering the best.

That has got to be the most self-centered declaration and vindictive attitude I've seen in a long time. Unless they and others who support treatment advancements hand over money to you personally to go to the best college you will call them Nazi's. If you are able to attend college and function reasonably on your own then I don't see why you need a treatment or absolute remedy to individual symptoms. Yet to politically attempt to threaten to receive money in replacement of funding for figuring autism out for those who want treatment is clearly an attempt to evade human rights. It's folks such as yourself that should look into a mirror and realize the selfishness in their demands. I do not take people like you seriously that are so very prideful they cannot accept others need and want help in context to treatment advancements that can be found by understanding the origins of autism.

It seems greed is not entirely about salaries of non-profits but that of politically hostile individuals who make reckless demands. I can only hope for the sake of self-advocacy you do not represent the vast majority of self-advocates in any way shape or form. Sometimes the mature, moral and ethical thing to do is to be stronger then ones own ego and pride for the sake of others potentials that treatments to come may bring.

You fail Goodwin's law.

FLUSH.



Such sick, disgusting narcissism on display from the "pride" faction.

I suppose since you are smarter than Einstein, you have a right to act so superior and self-important.

To hell with the non-verbal low functioning kids out there, they don't need any help.

No whats really important is that MagicMeerkat gets a free ride at an Ivy league so you can become a member of the Illuminati.

Okay, maybe I exgerated a little bit (okay a BIG bit) but at the very least they should provide some finacial asistance for me (and other autistic people) to go to college. You know, kinda like how some organations provide grants for kids of minorties to go to school just because they are a certian minority. How is finding a cure going to help non verbal low functining kids anyway? I don't think a post birth cure would be possible without killing the person. If Autism Speaks wanted to help, you think they'd offer to teach them sign language and other alternative forums of communication and help place service animals with autistic people who need them. If Autism Speaks truely wanted to help me, they would provide me with a squeeze machine or at least help me get one. I think a squeeze machine would bennefit me more than a scolarship to some fancy pants school I don't really want to go too in the first place. I would not go to Cornell if they were the only vet school on earth. I'd go be a cryptozoologist or something.

But I will not stop demonising Autism Speaks when they stop demonising autistic people and making us look like monsters. They could use their PSAs to point out the bennefits of having an autistic employee and mostly, stop making people fear us.

Which one of the below two would you pick?

1. Having autism is a great thing and treatment research is a bigotry that prevents our success in the world.

2. Having autism has benefits to it and while negatives can be researched to be corrected employees with autism are valued assets.

Which one of the below two would you pick?

1. Treatment awareness should be separated from inclusion (employment) awareness's.

2. Treatment awareness's should not be separated from inclusion (employment) awareness's.