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From their POV, yes, ABA works. It creates the desired results. Intensive ABA is most often used in very early childhood. Many of the principles of ABA are a follow through of the original work of Pavlov and his dogs - a reward and 'punishment' for proper and improper behavior. In all the literature I've read about ABA I could not find a single reference to the opinion, review, personal effectiveness on the patient who has undergone treatment. Success ios measured by 'correct' behavior and sustained retention of those behaviors. Not once has anyone asked the person with autism "How effective did you find this treatment? How has it effected you mentally, emotionally, behaviorally." On autism Speaks website they state that "Parents whose children received intensive ABA reported less stress than parents whose children received other treatments." Well, I'm glad the parents are less stressed. How stressful is this therapy on their children? Is that even a concern as long as the unwanted behaviors change?

Behavioral analysis relys on the core theory that all organisms respond to stimuli in predictable ways. ie: Pavlovs dogs salivate when shown food. The problem with this core belief when dealing with autism - I hope - is clear to those here. Science still does not understand how the autistic mind works. They cannot tell you how the autistic mind will always repond to stimuli. There is a fundamental lack of understanding in how the autistic mind thinks when compared to NT thinking. ABA applies behavioral correction to the undesired behaviors, to make the autistic mind react more like the expected norm. This therapy does not address the core issue, they do not know WHY autistics act the way they do. ABA doesn't create new thinking or understanding of NT ways to the autistic patient under treatment. It simply imparts what one SHOULD be doing to be more like everyone else.

How many parents have come here begging for understanding on why their children have meltdowns? Once you understand all of the 'why's' - then you can formulate a therapy that not only assists the autistic in learning adaptive behaviors but does so with respect and consideration for the autistic patient as an individual with feelings and a personality all their own.

At a very core level I can see ABA being very damaging to self esteem, a belief that is further reinforced with every 'punishment' for acting like an autistic. I know there have been brilliant 'success' stories with ABA - non verbal children being brought up to grade level and needing very little futher intervention, aggressive behaviors eliminated, etc... - but what is the cost? Where are the after studies? Where are these same psychiatric professionals post therapy to evaluate not only their behavioral 'success' but the emotional impact on their patients?

A message board is not a scientific tool - yet - but I have seen nothing but teens and yound adults here with shattered and nearly non-existant self esteem. And one after another, they all seem to have the same core issue - 'it is not ok to be who am.' That belief can come from a wide variety of sources. I'd be very curious to see how many of the younger generation were subjected to ABA in their upbringing.

Last edited by draelynn on 10 May 2011, 12:10 pm, edited 1 time in total.

Good post.

I think you ask some really good questions.

There is a debate in psychiatry about external behaviors v.s. internal states. Basically, diagnosis and treatment has been focused on the observable behaviors and traits without much attention to the mind that generates the behaviors. ABA would be entirely focused on the external behavior. My personal bias is understanding the underlying states of mind that generate that behavior. I would not participate in ABA by choice because of this bias. Since I'm not a mental health professional, this falls under a special interest, I suppose. I wonder if this external behavior emphasis is a reaction to Freud's obsession with the internal mind states. Perhaps his rather bizarre take on things (everything is phallic, right? ) precipitated over-compensation in the other direction. Maybe internal states will become more relevant again.

Last edited by wavefreak58 on 10 May 2011, 11:58 am, edited 1 time in total.

Maybe they deleted it because they didn't want a war of words to break out on their fb wall. I looked through numerous pages in their discussions section and there are several topics that are in opposition to a cure, some of them quite heated in fact. Those topics haven't been deleted, so there may be more to it than just trying to silence the self-advocating from people with autism. Maybe contact the administrator and ask them why it was deleted.

Are you claiming that the only time free expression should happen is "in its proper place"? Is that truly free expression? ANY organization can make itself look good if it DELETES and BANS all criticism of itself. My question is---why does it NEED to?



Criticism worded in a civil manner is certainly appropriate. Unless, of course, you are trying to avoid something (the obvious, here, the fact becoming public and widely known that many in the autistic community itself are critical of Autism Speaks....that might be BAD for public relations, and THAT doesn't depend on how civil we are, does it?)



They mislead people. They try to get as much pity as possible. They don't want to admit that those of us capable of speaking for ourselves even exist, because a lot of us don't like the way they portray us. There are lots of ways to get people to open their pockets, and a lot of them involve manipulation. Ever think that Aspies aren't good with emotions and therefore not good with manipulation of same?



No one is "conflating singular actions...into a grand plot against the autistic community". It is clear that Autism Speaks repeatedly deletes commentary from autistic individuals who don't agree with their approach, *no matter how politely and eloquently it is done*. That's not a "grand plot", that's an effort to make themselves continue to look good to their donors by not allowing them to see that people on the spectrum, the people they're supposed to be serving and helping, DON'T LIKE WHAT THEY DO. That is brazen dishonesty for financial gain, not some half-cocked conspiracy theory.



Our ideology doesn't make MONEY for a number of reasons, and none of them have a rodent's posterior to do with our being right. (1) I can only speak for myself, but I don't have the time or energy to make this a full time calling. Some rich dickheads who can't stand it that their grandkid was born with autism might be able to do that, but I can't. Most of us are just trying to make a living and get through the day, raise families or even get to the point where those things are possible. (2) As I pointed out before, NTs are better at emotional manipulation than those of us on the spectrum. We wouldn't make videos like those people made to try to elicit pity. (3) How many of us are good fundraisers? Not I, said the Kat. I hate cold calling people. Now do any of these things mean we're WRONG and they're RIGHT??? I don't THINK so.

~Kate

Freedom of Speech is just that - free to SPEAK your mind. Posting an opinion on a privately owned website has no such protection. If it was a publicly owned message board there might be an issue, but it is not. It's their board - they are free to do whatever they like with it, including banning and deleting people that do not agree with them.

WHY they do this is another matter. It is part of their agenda. They cannot raise money as quickly and effectively if the uneducated masses they rely upon for their funds are presented with opposing views. As soon as doubt is raised, their fundraising effectiveness dwindles. It's simply a business strategy. Nothing so shocking or morally questionable - just business. (I won't get into the ethics of big business here...thats a whole other can of worms.)

Simply fact of he matter is, Autism Speaks cannot ban ALL criticism of itself - it can only ban criticism on it's own websites. I'm not a fan of Autism Speaks for many reasons and that organization, quite honestly, could care less. People need to make their voices heard where it will matter. if you don't like Autism Speaks and they are coming to your town - call you local media and let them know that there is an opposing point of view. Encourage media coverage. Start a website. All the discussion in the world against them is useless if you are only preaching to the choir. bitching about Autism Speaks on an autism support board is exactly what Autism Speaks HOPES will continue to occur because it poses no threat to them.

If you want your voice to be heard you need to speak up where people, whose opinions you want to change, will listen. Most people only give passing interest and a tax write off donation to autism if it doesn't personally affect their lives. They really don't give it much thought beyond that. Yes, Autism Speaks is manipulative. Technically, all charities are - people are generally swayed by their emotions. The ASPCA uses sad faced kitties and puppies in their advertsing for a reason - because it literally moves people to tears. It motivates them to give. If Autism Speaks simply said that 'the majority of the austistic community is fairly well adjusted individuals that have some issues with social interaction', how many people would be moved to donate to the cause? Well, if they don't have it so bad...

Right or wrong, it's how the business of charities work. Some good may come out of their research however misguided it may be.

The question isn't who is wrong or right. It is about taking offense to Autism Speaks' management of their corporate sites. Sorry about your luck. That's THEIR little corner of the internet. If every time someone comes to your house they say your cooking tastes like crap, your tastes in decoration sucks and your choice of music is hideous, would you continue to invite them over? And then if that person complains "Geez, every time I go to Kate's house she get's mad and kicks me out"?

Autism Speaks is under absolutely no obligation to ensure unfettered free speech within their sites. Period.

It does nothing for the validity of any substantive criticisms of Autism Speaks. Wah! Wah! They deleted my post.

DUH!

You're in THEIR HOUSE telling them their cooking sucks.

If you have substantial criticisms of Autism Speaks that are material to the advancement of the autistic community, then lay them out. I'm all ears. Whining about their policing of their own property is childish.

The thing that really scares me is the assumptions and potential for abuse of non-verbal kids. This is the population most often subjected to intensive ABA. The assumption is that these kids are severely restricted in their cognative abilities often placing labels on their cognative function based soley on their ability or inabilities to communicate and reciprocate. More and more often, people are finding that their severly affected non-verbal children are very intelligent beneath their disabilities. Can you imagine the horror of growing up, understanding what everyone around you is saying yet they they treat you like an inanimate object because you have no way to communicate with them?

I really think there needs to be a drastic shift in how 'science' approaches autism therapeutically. There needs to be a shift in assumptions. Assume there is an intelligent human being inside first and treat them as such. If that is proven wrong, then so be it. Treating everyone respectfully and with dignity should be a priority and a right - not dictated by what 'observable science' thinks it does and doesn't see. Science doesn't understand meltdowns and shutdowns. WHEN are they going to ask an autistic why these things occur? Again, there is a core assumption that those on the spectrum somehow lack the cognitive ability to objectively analyze their own thoughts and behaviors when this message board, more than anything else, proves that theory wholly incorrect.

Science need to stop telling us what it thinks it knows and start asking questions of the only people who have the answers they need.

I don't bother to post anything on their page because of their unabashed censorship of those they CLAIM TO HELP AND SERVE. Duh. I happen to *be* one of those folks they *claim* to be *helping and serving* (but yet would censor if I dared to say what I thought...hmmm....)

I do have plenty of *other* criticisms, but those aren't what we were discussing. My major criticism, overall, is that they leave the autistic community OUT of decisions that affect us, but that whole approach isn't limited to our criticisms of them. They claim to want to "help" us, but don't want to hear *from* us. That's one reason I "whine" about them deleting criticisms from their site. It seems like they're all about excluding us, whenever we try to give input.

IMO the vaccine whackos are worse....but that's not sayin' much.

~Kate

I happen to agree with you to a point. Their presumptive position as The Voice of autism can be irritating. My only point is that complaining on their site about them and expecting them to take it on the chin is bizarre. I don't understand that. That they delete posts that they don't like only means that they are actively exercising their rights to manage their image on their property. How can anyone be surprised or offended by that?

I personally think they should have a few Aspies on their board. Maybe most of us are not qualified for such a position, but surely there are a few very high functions spectrumites that could handle the responsibility.

I am looking at this objectively; the preponderance of evidence from the scientific community supports ABA; Can you provide any research that indicates it is not an effective treatment for Autism and it is harmful for Autism Speaks to endorse it?

What should Autism Speaks do? Endorse an intervention other than ABA that has not been thoroughly validated by scientific research? It doesn't cure Autism and doesn't work as well in some as it does in others for people that have autism, but if the research supports it, federal agencies support it, and other non-profit organizations support it, who are they going to listen to in making a decision on interventions to support? Opinion, speculation, or established fact?

Autism Speaks has asked for opinion from Parents that have used ABA and have received positive as well as negative comments on it's effectiveness. They have a web page dedicated to those comments on their site.

They are not asserting that it will work for everyone, instead supporting research to find out why it doesn't work for all Autistic Children; this could lead to improvments in intervention techniques.

If you can provide any reputable scientific source that is questioning the long term psychological harm of ABA for Autistic people, I might be inclined to take your opinion more seriously, but I have searched for a similar concern in the scientific and professional community and can find none.

In the current longitudinal study that will go on to the teens, if there are serious mental issues that are obvious with the ABA subjects as opposed to the control subjects, it might become a concern at that point for the scientific community, and there would be an opportunity to continue to follow the teens into adulthood.

Here is an excerpt from the PEAT website "Parents Education as Autism Therapists". It is a charitable organization not related to Autism Speaks. In the excerpt they reference the Lovaas Longitudinal Study and a number of other studies that replicate the results.

As you can see from the excerpt a long term study into the teens is already underway.



http://www.peatni.org/aba/will_aba_help_my_child/index.asp

Autistic people on all parts of the spectrum are given the opportunity to interact with researchers; there is no evidence I see there of Autistic people being gagged and not being able to provide input for research.

If you can provide any evidence of where Autism Speaks gagged someone for constructive input done in a professional manner I would be interested in seeing that. I see the criticism of Autism Speaks whenever I look at their discussion board on the facebook page; there is no evidence that I see of a concerted effort to silence all criticisms and again I have seen where they become personal at times.

So, whatever it is they are deleting may be highly personally offensive to others on the discussion board, or personal slanderous attacks against Autism Speaks like they are an abortion organization, a Naz*, group; a eugenics group, they hate people with Autism, etc.

But again, as reinforced by others in this topic, it is their turf, the best place for unfettered criticism, especially the angry, name calling stuff, is off their turf. The slanderous comments can create problems for those that make them in public and can be identified, as they do have legal recourse, and have shown they take their mission very seriously, and don't want it impeded by attacks that aren't backed up by facts.

I don't think that Autism Speaks expects you to endorse them if you don't agree with their mission or the research they support. I don't know of any organization that pleases everyone or expects that they can please everyone.

Autism Speaks is a very large organization that has the ability to consult lawyers on every move they make to insure they are within their rights. Not likely they would do anything intentionally to harm someone or break any laws; their legal consults insure they stay within legal boundries.

I've never seen anyone prove that they do anything illegal. Harming someone intentionally, would be illegal. No one has come close to proving that. And to state that they are harming someone intentionally rather than to offer an opinion that something that is not directly related to them might harm someone is the difference between an acceptable opinion and a potential slanderous statement.

I think those of us who disagree *should* organize, if we can, too. That they think they can dominate "the Voice of Autism" is downright scary to me. I don't consider them Nazis or eugenics freaks or anything like that, but how they can claim to speak for us when they shun us is beyond me! (and it's a bigger problem than just deleting things we write...like I said, I wouldn't bother writing on their fb page because it would just get deleted). I think they should have a few Aspies on their board as well, and that it is reasonable that *any* large organization would have its critics as well as its fans, and they would do well to recognize that instead of running from any politely-delivered criticism (and addressing it would be a true breath of fresh air and a sign that maybe they CARE about those with autism!)

I have seen organizations and businesses handle (constructive) criticism effectively without just squelching it and without just letting people bash them. It is possible to do. If someone's just trolling their page, then yeah, deleting it is about all they can do, but I simply disagree when it comes to civil discussion.

~Kate

ahogsday...

I think I already mentioned that "because they say so" is hardly objective evidence of anything?

A quote from a site promoting ABA is not any kind of independent research. Even if it were it makes no mention of the long term psychological and emotional effects in adulthood at all which is where the damage becomes apparent.

Maybe we have different standards, but to my mind, managing to avoid being caught actually doing anything illegal hardly establishes any genuine concern for Autistics, now does it?

Incidentally, I do not think there was ever the slightest risk of me taking anything you say seriously.

Last edited by Zeraeph on 10 May 2011, 6:22 pm, edited 1 time in total.

Kate, I think you just cut through all the red tape back to the self evident basics with that.

So are over 20 states funding an intervention that may be harmful to children?. How are they getting away with it? Tax payers are footing the bill for an intervention that may be harmful? The surgeon general recommends an intervention that may be harmful?

How can Autism Speaks be accused of engaging in an unethical action for providing awareness of the ABA intervention that has been used world-wide for fifty years and for providing funding for additional research to possibly improve ABA interventional techniques. They don't fund the actual ABA intervention for children. Tax payers, individuals, and insurance companies do.

Is a insurance company going to cover an intervention that is actually considered unethical? I don't think so.

If it is unethical to fund ABA Intervention, thousands of other people are playing a much bigger role in this than "Autism Speaks".

If all these other organizations, states, agencies, researchers, don't see ABA as potentially harmful and unethical, what is it about Autism Speaks that should make them see it differently, as unethical or potentially harmful. What should they listen to, to make informed decisions; facts supported by thousands of people or opinion supported by a relatively small number of people? They support the fact that it doesn't work for all Autistic people. I think that should be all that is required, considering all the other factors.

I don't see a problem with one that holds an opinion that the therapy itself is unethical; but there is no actual evidence that Autism Speaks is engaging in an unethical action by providing awareness for a widely supported and scientifically method of intervention and providing research funding to improve it.

In my opinion, I think it would be good, if a study could be effectively designed to track the psychological effects of ABA longitudinally over a lifetime, but I have researched it in every place I can think to look, and can't find one opinion from a reputable source on how a study like this could successfully be done, on an empirical basis, on what the specific effect ABA has on mental condition through life in Autistic people.

At this point, researchers can't even come up with solid empirical data on why depression is a co-morbid condition seen at a higher rate among those with Autism. Is it environmental, structural, chemical? All they can do is provide correlation and tell us it is a co-morbid condition seen with Autism. Same with Alexithymia.

Put ABA in the mix and you get another environmental factor and possible correlation, but how can one isolate a psychological problem to ABA. Is it because the kids that were provided the ABA intervention were going to be more prone to psychological problems or did the ABA cause psychological problems?

To even come close to providing a study like this one would have to provide a control group of Autistic people that received ABA and a group of Autistic people with that didn't receive ABA, and exclude all other environmental factors that are not directly related to ABA, that may be a contributing factor to psychological health as an indirect result of ABA.

How do we isolate the acceptance factor in a psychological problem that may occur 20 years down the road? Does a child with more acceptable behavior skills resulting from ABA receive more positive social attention than one that doesn't?

If the children with ABA were more likely to be mainstreamed into regular schools because of their acceptable behavior, would they be more likely to be bullied and become depressed than those children without ABA that weren't mainstreamed? Are the children without ABA more likely to go to group homes? If so, are they more likely to develop psychological problems at a group home?

Do we get to control the places they go to to in life to insure no other factors indirectly related to intervention with ABA don't influence the results of the study?

The potential contributing factors on the psychology of a child that may be an indirect result of receiving or not receiving ABA could not all be possibly identified, measured, or excluded in determining whether or not ABA was the actual cause of a psychological issue.

The few potential problems I mentioned are just the tip of the iceberg on potential problems with a study like this.

Science has a hard time isolating specific reasons why normal people develop psychological problems over a lifetime. I think some of us may be holding "Autism Speaks" responsible for funding research that may not be seen as feasible by researchers to pursue.

If you can find any reputable source that states that such a study could be done, and worthwhile to attempt to gain an objective result that could provide significant evidence of whether or not ABA was the precipatating factor in psychological problems in a lifetime study, I would be interested in what that reputable source is.

That control group exists as those adults that were not diagnosed with autism until late in life. I am 53 and have had ZERO autism related interventions. I am an unwitting control, perhaps, but definitely one unsullied by autism treatments. This does not do much for disentangling the co-morbid depression, alexthymia and executive dysfunction, but it does offer some potential for clarity. I don't know much about ABA. Is it mostly utilized in lower functioning populations or has it been used in autistics closer to being able to 'self adapt' as it were?

My understanding is it is mostly used for Autistic children identified as Autistic in childhood that have difficulty with what is considered normal behavior. My understanding is there is no early screening test for Aspergers that would allow that type of intervention for people with Aspergers at an early age. But, the proponents of ABA see it as a useful tool for Aspergers or Autistic people of any age.

I am 50 and also have had zero related interventions, even with a speech delay until age 4, but pediatricians at that time, evidently were not as aware of all the related issues of Autism. Regarding intervention or behavioral modification, the general public served that purpose for me, letting me know if my behavior was not acceptable, and letting me figure out on my own how to modify it to be accepted. I'm guessing you experienced your own type of informal ABA also.

With or without ABA, having to modify ones behavior to meet expectations that are known or not known is taxing through the course of a lifetime. There really, as far as I know, is no way to escape what is required in life to be accepted and survive, whether or not someone spoon feeds it to us, or we figure it out by trial and error, and reward or punishment by peers.

The cold icy fingers of Alexithymia and depression have hit me in periods of my life, when there was no objective reason for it as far as I could see. For one that has experienced complex mental states that were not understood by self, I find the idea that someone else can provide a reliable way to provide an objective origin of cause for internal states or personality traits that happen years later as impossible.

That's why when people go to a GP these days and complain about stress, anxiety, or aches and pains the doctor kicks the computer by offering whatever brew of anti-depressants that are popular at the time of diagnosis. What else can they do? Tell you to take a vacation away from stress? Most of us don't have an opportunity for that type of vacation, especially if we live in the mainstream world with Autism.

And as another example I was extremely happy for a course of over 20 years after being extremely depressed for over a year. If I had ABA as a child and was tested by a researcher at different ages my state of mind might be good at one age and bad at another.

That is the way it works for people with no Autism as far as I know, so a longitudinal study for psychological problems and what causes what and the idea that someone could pin it on a behavioral intervention program received at a preschool age, if that person has psychological problems at 10, 20, 30 or 40 years of age becomes quite complex. I don't think psychology or psychiatry will ever come close to anything approaching an empirical understanding of the elements of state of mind.

100 years from now people will probably still be going to GP's or Psychiatrists and they will be responding back to people with problems with okay that drug didn't work, let's kick the computer with this drug. Sorry, you can't take a vacation from stress.

Back though to your original point about us being a control group at age 50, in a scientific longitudinal study the control group of Autistic people without ABA would need to be of the same age and studied also on a longitudinal basis.

Can you imagine someone putting the time, effort, and funding into a 20 or 30 year project knowing the whole time that it is possible complex external factors that you cannot control could ruin the validity of the entire study?

We can do it based on behavioral skills; they are clearly visible, objective, and can be measured the same way, repeatedly, over the course of a lifetime.