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The article referenced a number of scientific studies that replicated the original longitudinal study done in 1987. These are all easily verifiable; just type the dates and names of the researchers and Google provides the results. Some of the research requires a fee to view the entire text of the research. If you would like I will paste excerpts from the studies that do not require a fee to view.

No one is looking into research for psychological and emotional effects down the road; behavioral skills can be objectively and reliably measured longitudinally and linked directly to ABA. There is no evidence that I have seen that psychological impacts in adulthood can even be reliably researched, measured and directly linked to ABA.

I don't expect you to agree with any of my opinions but the research supporting ABA is real and easily verifiable; You haven't provided any references in support of your opinion, if you did I would take the time to read them and re-consider your opinion that Autism Speaks is harming Autistics by endorsing the same intervention that 20 states, Federal, and state agencies endorse, and insurance companies cover as an effective means of intervention in Autism.

All of these other endorsing groups could fund research to determine if there was a significant potential of harm to Autistics if a reliable method of establishing a link between state of mind in adulthoood could be linked to behavioral therapy received in preschool.

It is easy for big organizations to break the law unwittingly; that is why they employ lawyers; to ensure they don't. If you can't provide any evidence that Autism Speaks is intentionally doing harm to autistics that remains your opinion. So far I've provided evidence that they are not intentionally doing harm to Autistics, backed up by facts.

ABA has more research proving its effectiveness on Autism than any other method does. While it largely doesn't pan out as an "end-all-be-all" sort of therapy, it also doesn't pan out as harmful while there are SOME good points and correlative goodness.

I had this discussion with Ari Ne'eman last Friday and he agreed but cited that Occupational Therapy was perhaps better. I did not understand that because OT is hardly a scripted method and there is ZERO evidence research wise on that. I let him have that though. Ari gave me some good insight into the reasons why he is so against Autism Speaks and I, sort of, get it but also not really. It was more about protecting people who are idiots more than about anything that Autism Speaks does that it blatantly wrong. He thinks the funding picture is not clear enough nor does he feel enough funds go towards advocacy or adult services. (no big surprise there)

I actually am grateful as could be that he took this time to talk to me and ask me to stay in ASAN as a leader. I am learning and thinking about this but still am curious as to what Autism Speaks does that is so horrible. I just don't see it and they are very much willing to speak with me too. I obviously have a lot to learn but while I am learning I am very curious from the people who "hate" Autism Speaks what you feel about those autistic who have no voice. Who is their voice if not their NT parents? Do you really presume that you could do it better? I know I could not.

I remember an experience while working with the military, before I was diagnosed, when a young man came into the headquarters for a dependent ID renewal. It was obvious that he was experiencing extreme discomfort from being in this environment and we managed to give him comfort by printing out a picture of a Lion so he could focus on it, one of his special interests.

He was not able to speak, but fortunately his parents could tell us what made him comfortable. If it wasn't for his parents none of us could of done anything for him to reduce the terror he was experiencing from being in the new environment.

The first time I heard "Autism Speaks" I immediately remembered that experience and related that phrase directly to my memory of that young man and his fortune in having his parents with him to speak for his needs.

Every child has different needs, but in a case like this where someone does not have the ability to communicate, who could possibly understand the child's needs other than the parents of the child. I also will let the parents speak for their children. Those of us that can speak for ourselves are fortunate to have that ability.

I can't possibly understand the needs of a child that cannot speak; that is what "Autism Speaks" intends to help provide one day; an opportunity for children like this to speak for themselves, without the necessity of assistance from their parents. I don't know how successful their mission will eventually be, but if that mission does anything to make that young man's life and others who experience life like he does better, it's a mission that is worthwhile.

Autism Speaks also provides an endorsement for Occupational Therapy on their site, among many other interventions. I think it is good that there are so many alternatives out there that may work when other methods don't.

It's not a house. And it's not cooking. It is seriously qualified business people making decisions about millions of pounds of millions of people's money on the basis that they understand and are able to help autistic people. Your analogy doesn't work. They aren't doing something for me out of the goodness of their hearts, they are asking people for money ON MY BEHALF and IN MY NAME as an autistic person, and then using it for stuff I don't agree with, usually to benefit people who aren't autistic, like parents.


Am I surprised that they deleted a critical comment? No
Do I think they have a moral obligation to listen to and publish dissenting opinions, given their claim to speak on our behalf? Yes
Do I think they should be criticized extensively and lose donations for not doing so? Yes

None of this is relevant to the point that what get's posted on THEIR SITE is under their FULL CONTROL. Period. It is ridiculous to wish it to be otherwise. If the owner of a site cannot monitor the site in alignment with their goals then you have anarchy because this lack of control would have to be extended to ALL sites across the entire internet unless you wish to be hypocritical . My point is really simple if you could only separate your emotions from the situation. It is a faulty expectation to want Autism Speaks to NOT delete such posts. If you go back to my post that started this, I explicitly said that I don't understand this expectation. I said NOTHING about the validity of Autism Speaks' ideology.

In this thread, a post was added to the Autism Speaks site with the expectation that it would be deleted and when it was actually deleted, that was given as evidence that Autism Speaks is a bad actor in the autism community. All that it is evidence for is that Autism Speaks actively controls the content of its own property. This idea that they SHOULD allow whatever anybody wants to post to their site, otherwise they are a big evil entity bent on suppression, is utter folly.

Criticize Autism Speaks. Do it well. Do it eloquently and loudly. But don't expect Autism Speaks to allow that criticism on their site.

As a parent with an Aspie girl, I've seen the effects of ABA and OT first hand. My daughter was fortunate enough to have not encountered ABA until she was 8 but she had been in OT since she was 3 1/2.

OT has helped her build confidence and skills. In her case, those skills are lost as soon as OT ceases (as was proven by a misguided removal of services from one of her previous IEP's). My daughter operates at, about, a 3 year maturity deficit in many areas. She needs physical assistance to learn how to walk confidently down the stairs, to run, to throw a ball and her coordination in general with both gross and fine motor skills. All of these things could be quite damaging to her self esteem yet, through OT, she has learned that she is capable and that her hard work pays off. She is proud of the work she does in OT.

ABA - for older kids our school district uses a rewards system for 'apropriate behavior' and it has been the complete opposite. 'Apropriate behavior' is a self policing system of her autistic behaviors that they wish to change/improve. Some of the behaviors they want her to improve (verbatim): entering homework in her assignment book without prompting, be in her seat with all materials at the ready at the time the lesson starts, accept mistakes without crying or pouting, gain attention from others by waiting for a pause in the conversation rather than tapping a shoulder or pulling a sleeve, when talking to others keep her head raised and face the communication partner. Sounds 'reasonable' to the NT teaching staff and is advocated strongly by her Special Ed teacher. So, they want her to pay attention to and fix her own executive function difficulties, learn emotional control, and learn social skills by SELF REGULATION. Failure to do these things does not result in punishment but it also does not result in the reward promised for success. Will this teach her those skills? No - it will teach her those SPECIFIC skills in that setting. They fully expect her to learn these skills and have them follow through outside the classroom and with people in general. It does not work that way. Her inability to succeed is damaging her self esteem as she needs to constantly make herself aware of exactly how different and 'wrong' her behaviors are compared to everyone else. Like many Aspies, she is extremely self critical and asking her to self regulate is almost as good as asking her to bully herself. Like so many other stories I've read here - her teaching staff, all highly qualified and experienced with autism - fully believe that they are changing her thinking. It doesn't even occur to them that she is just apeing their examples without any real understanding as to why she needs to do these things. This makes her feel bad about herself and who she naturally is. I do feel she needs to learn these skills, and I'm confident, in time, she will. But, I also believe that it can be done without compromising her self esteem. She doesn't need to change who she is and that is what ABA asks her to do.

I'm no scientist but the effects of both therapies have been clear and obvious to me. Of course, I have a unique perspective. None of my daughter's teachers are autistic. They do not see what I see and because it is not written in a book, or had a major study done, I am discounted out of hand. Science tells them THIS works. I think ABA takes too high a toll. The benefits are not worth the price of my daughters self esteem. Skills can be learned in a more supportive way.

Autism Speaks is more concerned with what makes life easier on parents and caregivers. They clearly state those goals on their website in their assessment of ABA. I think ASAN is much more concerned with how these therapies affect those receiving them. And your conversation with Ari just confirmed that for me.

@draelynn

I wonder if the difference between OT and ABA is because of the difference between the goals of those two therapies. The goal of OT is to learn do a certain thing. The goal of ABA (appears to be) to learn to be a certain way. OT is very pragmatic. It's all about teaching a person how to accomplish specific things rather than attempting to change the person as such.

ABA seems so concerned with how things appear on the surface rather than trying to figure out how they actually are. OT seems concerned with mastering a skill, which is a concern with how things are rather than how they appear.

Hey, have you ever cared for an elderly patient suffering from senile dementia? When you're dealing with a low functioning, non-verbal autist who is prone to fits of violence, autism isn't just something "different" about a person that one could conceivably adapt to. It's an illness.

I don't think that the Autism Speaks people would have any interest in finding a "cure" for some guy who has Asperger's Syndrome with mild Tourettes, a touch of ADHD symptoms and some clinically inconsequential cyclothymic tendencies or mild SSRI-treatable depression.

Their set of issues is a little different from the branch of the ASD community that is primarily angling for changing the system to make it more habitable for people who have issues that would be non-problematical in a world in which they were understood and their feelings and needs were being treated equally to the feelings and needs of others.

It's one of those apples and oranges things.

It seems to me that Autism Speaks is definitely geared towards the low functioning end of the spectrum. Where this creates tension is that Autism Speaks dominates the dialog and effectively sucks up the lions share of the resources. It is great at fund raising and if someone gives to Autism Speaks, they are perhaps less likely to give to another organization. Simply by virtue of its size, Autism Speaks dictates a great deal about the course of autism treatments, research and awareness. This does not necessarily serve the interests of the high functioning community. But this does not make Autism Speaks a bad organization.

Kfisherx...

You say you are a leader in ASAN? How curious that I have never come across you, because I have a very great deal to do with them.

EXACTLY!! ! I am an AS parent of three children with ADHD, one of whom also likely has AS (she is in the process of being tested right now). I don't want my AS daughter to dislike who she is, and I believe there is some of ABA that teaches that. I don't think it's "all bad", but I do think more endpoints need to be looked at when studying this than just "frequency of behavior X" and "frequency of behavior Y". That may be all that's important to PARENTS and TEACHERS, but as a person with AS, that's not all that's important to me. It's merely one thing out of many.

~Kate

aghogday (my apologies for earlier typos, I am mildly dyslexic and sometimes a word gets into my head as a picture and sticks there. I was horrified when I realised my error)

It is frankly horrifying that a system of intensive conditioning should be applied to exceptionally vulnerable children without any research into potential long term effects...even though it is already established that any early, intensive conditioning of a child to be something they are not (which is exactly what ABA is), and never can be inside, only ever leads to one seriously messed up adult with a totally disintegrated identity, and the more skillful and targeted the conditioning, the worse the damage.

Also, it is hardly rocket science to see that to condition a child to a totally alien and artificial level of dependence on the validation of third parties, when he will never have the internal social skills to develop healthy appropriate relationships to provide that validation after he has outgrown parents and tutors is a recipe for disaster bordering on madness.

Autism Speaks have striven for and achieved a monopoly influence over "Autism Awareness" and the direction of research internationally. Using their considerable, highly paid PR resources they have persistently distorted the direction of both away from Autistic people's real needs and benefit, towards the personal gain, in terms of money and influence for themselves and their affiliates. They are not fools, they know it is far harder for autistics than for other people to combine into a united voice to challenge them whatever they do.

Never mind all the devastated lives they leave in their wake.

I am not a cash crop, I am a free human being, and the same goes for every other autistic on the planet.

...and persistently, blindly, regurgitating the Autism Speaks party line has no effect on that, however much you want it to.

Validation by third parties isn't a very good way to learn things. Although nobody ever says ABA in relation to teaching techniques for NT kids, ABA-style teaching has worked it's way into the curriculum and it's backfiring. Since the ABA aimed at NT kids isn't meant to change their neurology, it doesn't seem to result in bad self image or the other fallout of long-term ABA in autistic kids. What is happening instead is that kids are simply adopting the behaviours just long enough to get the reward and then abandoning them once away from the adults.

The most infamous example is reading pizza parties. Kids are given a reward of a pizza party when they read X number of books. The hope is that by rewarding the kids every time they display reading behaviour, they will internalize this reading behaviour and read on their own without rewards. But the kids don't internalize reading behaviour. They read just enough to get a pizza party and no more. The educators think they have succeeded because they have paperwork proving the kids have read X number of books. It's a failure of ABA (although nobody calls it that) but the educators call it a sucess because the kids are displaying reading behaviour, just like they are supposed to. But they aren't actually becoming readers. It's all in Alfie Kohn's book Punished By Rewards. The fallout is nowhere near as bad because it isn't their neurology being called into question. But I think that it shows how an ABA approach fails even while it gives the measurable appearance of success.

I don't financially support Autism Speaks; when I see a potential fallacy in an argument I like to pursue it with facts.

The problem I have with you statement is this:

"even though it is already established that any early, intensive conditioning of a child to be something they are not (which is exactly what ABA is), and never can be inside, only ever leads to one seriously messed up adult with a totally disintegrated identity, and the more skillful and targeted the conditioning, the worse the damage."

You are asserting this statement as established fact and at the same time are requesting research to find out if it is true. I've tried myself to find any evidence of it but can't. You keep repeating it but can't provide a single bit of research to back up that ABA only ever leads to one serious messed up adult with a totally disintegrated identity.

It's one thing to say I think this might cause this, but it's another thing to say it does cause this at all times, when you have no evidence to back the statement up. There are a multitude of peer reviewed articles not associated with any ABA group that state that the therapy is effective for some children with Autism, listing no potential harmful effects into adulthood.

I have no evidence that it does not cause problems in adulthood, but I also have no evidence that it does, above and beyond having the condition of Autism, in itself

I think in general having Autism and living in a world that expects what a person is not easily able to give and adjust to makes life harder. The mental problems co-morbid with Autism and Aspergers are caused by something, with or without ABA. Some people with Autism find a way to adapt and some don't.

But some people with Autism require a great deal of assistance from others to live. I'm glad you function well but everyone with Autism is unique and have their own set of issues to deal with. I don't need Autism Speaks, or anyone else to tell me about it because I have witnessed it up close and personal.

All Autism Speaks is doing is rehashing what other organizations, agencies, states, and researchers, state about ABA; that's not rocket science it has already been established for years. They provide awareness of treatments, but not just ABA, many others as evidenced on their website; They state that ABA has been researched and proven effective, a gold standard, and reduces parental stress, but so do many other agencies and organizations that do not benefit directly from ABA.

You are attempting to state that providing information on ABA, and not doing research to prove an opinion that some hold, is harmful to Autistics. If that is so there are many others guilty of the same thing. If it is your dream that one day Autism Speaks does not exist, another website will pop up with the same awareness information.

According to Kfisherx, Ari' Neeman sees the value in ABA, but prefers OT. Any person that visits the awareness page that Autism Speaks could make the same decision on OT based on Autism Speak's positive endorsement of that therapy. In that regard for the ability for personal preference, what makes the issue with ABA different for ASAN, than it is for Autism Speaks, if both sources see a value in both methods of treatment?

And by the way, I would be more likely to financially support ASAN than Autism Speaks, because they receive much less funding, and I think self esteem among the higher functioning people with Autism is vital to mental health.

I've lived with Autism; not Aspegers, most of my life, without any kind of third party moral support. Any kind of connection provided for those that understand the difficulties present in coping with the mainstream world is good for self esteem, and this seems to be the area that ASAN excels in.

If you like, you can look at my previous posts and see that I have spent just as much time trying to convince others that ASAN is not harming Autistics, and their services are vital to people with Autism.

The opposing view there is: I don't like ASAN because they are against a cure, don't think Autism is a problem, and they may take funding away for treatment from people that are lower functioning. It is just as hard to influence those people that ASAN is not somekind of evil organization as it is to influence others that Autism Speaks does not exist to harm people that have Autism.

It's easy to see what underlies the differences of opinions that people have over the I'm Okay vs I need help point of view. Both views are related to survival and have equal merit.

The bottom line though is the same kind of help doesn't work for everyone. The more options that are available, the greater the chances that those individuals that need a unique kind of help will eventually find it. If there was only one organization; ASAN or Autism Speaks, there would be far fewer options. But, that will never happen because need is a far greater power than opinion.

Last edited by aghogday on 11 May 2011, 10:08 pm, edited 1 time in total.

Can give you provide a list of what you consider Autistic people's real needs and benefits?

I've already listed the need to attain better self esteem for higher functioning Autisitic people attempting to function in the mainstream world where they are at times not accepted, by providing third party support like ASAN, as an advocate to provide moral support and awareness of the value that Autistic people have, to contribute to society.

Many Autistic people need help and benefits; what are some of their other real needs?

It never once crossed my mind that you financially supported "Autism Speaks", but I admit to wondering if the river ran in quite the opposite direction.

You do know that there is a distinct difference between "facts" and the one-sided "Autism Speaks" party line you never deviate from?

Last edited by Zeraeph on 11 May 2011, 8:17 pm, edited 1 time in total.