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I personally know Autistic kids who have become experts at "gaming the ABA".

Kids will be kids, autistic or not...but, of course, the only thing they learn from that is how to manipulate situations and people which, in combination with intensive conditioning to pretend to be someone they are not, totally disconnected from their emotions is yet another, obvious, recipe for disaster in later life.

I seriously do not see the point in wasting the time it would take on attempting to discuss the real needs and benefits of Autistic people with someone who seems determined to emulate a loop tape of "Autism Speaks" standard credo, against all logic, reason and reality.

That is just pointless.

Then go away.

If this is your best argument you aren't worth the time it took you to write it. I'd bet you haven't anything substantive to offer the debate so you fall back on to a self inflated idea of your superior position.

There are some of us here that have yet to fully form an opinion on Autism Speaks. Your dodge shows your intellectual dishonesty and fails to take advantage of an opportunity to persuade those of us still looking at the matter.

Well done!

There are a lot of small local groups that don't contact each other directly very much. Most likely s/he is involved with one of them.

That is exactly what is happening... but those using ABA therapy seem to be under the impression that these surface skills they are 'teaching' are something more comprehensive than a bit a rote memorization. I'm not sure how anyone else feels about someone telling them they need to learn 'to be' different - the implicit message is that who you are isn't good enough. It's the wrong message wrapped in what seems like helpful therapy performed by truly compassionate professionals who just cannot see the potential for harm.

I haven't been arguing that my personal opinion, is ABA is the best intervention. I'm glad I wasn't subjected to it as a child, and didn't particularly care for behavior modification for humans when I studied it in college. My opinion, at the time, was it works for dogs, but wouldn't work for me.

The results from research that ABA helps some children, and it is endorsed by so many agencies across the world are facts that support Autism Speaks decision to provide awareness on this therapy, as they provide awareness for a number of other therapies that are seen as effective intervention methods, as not an unreasonable action, and certainly not one intended to harm someone; any more than the intention that the other agencies that actually fund the therapy have.

If you had a child and didn't like the effects that ABA had on your child, I wouldn't try to convince you that you were mistaken; I already am aware it doesn't work for all children. However, if I had a child that was severely impaired that could not function without the therapy, I doubt you could convince me I was hurting the child, if you tried.

That is the feedback that many parents give regarding the therapy; I certainly don't have a right to impose my personal opinion that behavior modification wouldn't work for me, on them.

Your statement that Autism Speaks is harming Autistics by not doing research you see as important and by providing Awareness of the most common intervention therapy for Autism could be seen as slanderous and is at least not supported by any facts that you can present. In general, it's not a good idea to state that big organizations are harming people when there is no evidence to back it up. If you can support it with facts it can no longer be seen as slanderous.

Can you see why Autism Speaks would be within their rights to delete a statement like that from their website? Without being backed up by facts, if a person were to state that an organization was harming people by their action or inaction, it could be seen as slanderous and subject to a lawsuit. If Autism Speaks, just erases a public statement that is technically slanderous and doesn't threaten legal action, they are doing that individual a favor, not hurting them.

And, I am fully aware they have threatened legal action for copyright infringement, so it is already pretty thin ice.

I personally don't like to hear someone state that anyone is harming someone when they can't prove it, whether it would be Autism Speaks, ASAN or any other organization or individual; particularly when it is on a discussion board, where people form opinions on the actual pros and cons of an organization; I personally don't see that as ethical.

If someone believes an organization or someone is harming someone else by their action and or inaction and can't prove it with facts, the best way to express it is by opinion such as I think, it might, etc., not they are, it is or they do. A simple way to avoid any potential of trouble down the road. Please though, don't take my word for it; research that if you care to, and don't believe it.

Why would you come across me as an ASAN leader? Are you on the board or some such thing?

I am dabbling in ASAN right now and learning about them helping to lead our local meetings. Ari invited me to stay in ASAN and be a leader last month at our talk which means to help the people in my group learn how to function better and advocate for themselves. I did not say board member or anything like that. Are you abstracting my words?

Confused...

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^^THIS^^

You are actually helping me to decide to move away from ASAN as this is the sort of crap answers I hear time and again from people who claim they are associated with the organization. If that is how ASAN operates than I would rather work with NTs.

I don't think so, I'm not the only one reading your input. If you have valuable ideas on what the needs and benefits are that Autistic people need, I'm not going to be able to influence someone else into believing they are not good goals or specific solutions.

I've already stated that I like the mission of ASAN and think it is important and beneficial to people with Autism. If you only state the good things that ASAN does for Autistics, that is certainly worthwhile and beneficial for new people that peruse these boards to be aware of, in providing a greater understanding for them.

Since you state that you are involved with the leadership of the organization; you may be able to provide more detailed information, than most people could relay. I see the potential value of positive input that you might contribute.

I think many people that visit this website are aware of ASAN, but I can't remember hearing many details of the programs and specific ways to get involved in their programs that can be of benefit to people. Every once in a while someone will post an article related to ASAN in opposition to a new initiative on Autism, but I haven't heard many details on their positive initiatives to help Autistic people.

If you can't provide that information, maybe someone else can. I do know they have support groups online, but am not sure how one goes about getting into one of their actual support groups spread around the US or how prevalent they are in each state.

I'm really not sure if they are physical in nature, or are mostly online in nature. If I remember correctly Kfisherx mentioned going to meetings but I'm not sure if that is for leaders or the general public that has Autism, that could use face to face social interaction and support with others that have Autism.

And they may have other activities that people can participate in that many are not aware of.

There is one group for people with Aspergers in a 50 mile radius of where I live but they are not associated with ASAN. Interestingly, It was for adults but more than half of the people that showed up were parents of children with Aspergers, sometimes without their children.

I think there is a need for that live interaction between people, since there are relatively few people with Autism in the general population to be found in the workplace or other common areas to meet people.

Exactly what I was wondering Callista...

Why how kind.

I actually thought this was a discussion about challenging Autism Speaks, not appropriate therapeutic approaches to Autism...I must re-read the header.



Actually I don't think Wavefeak58 IS particularly associated with ASAN...though if I find out he is I might consider going along with you and distancing myself...I don't think I could take too much of that kind of "charm assault".



Frankly, in the real world, I cannot imagine you ever trying to influence anyone in favour of anything that challenges Autism Speaks and friends.

I can see where you are going with this but the argument that unless Autistics dialogue with Autism Speaks they will never know how to improve is just as invalid as all the others, because it is predicated upon the assumption that Autism Speaks actually care more about what happens to Autistics than about profit and influence, which they have demonstrated, over and over again, is not the case and never will be.

The bottom line is that there is not, and never will be a way forward for Autistic people to have access to real, fulfilling and productive lives in alliance with organisations like "Autism Speaks" who, effectively extract a toll from all available funding before redirecting it into areas that will consolidate their power to go on extracting that toll in future. A pattern that is hardly unique in the "not-for-profit" sector.

I do, incidentally share my perspective on what Autistic people need and benefit from frequently elsewhere, but more importantly, I fight to keep the way open for other sincerely intentioned, Autistic people to do so too. Which is the most important part.

PS Sorry, my posting was disrupted there and I lost my train of thought and forgot one more thing.

As long as "Autism Speaks" and affiliates fight to garner and monopolise all the funding and resources available to Autism there will never be any available to user lead organisations who might be able to achieve something instead. It is a common fallacy to feel that when something good and healthy is not being made available something detrimental is the next best option just because there is nothing else at all. That is a big part of the reason why abused children and partners will often defend their abusers and refuse to leave them.

Last edited by Zeraeph on 12 May 2011, 7:37 am, edited 1 time in total.

From my perspective ABA looks like a close cousin of DBT...which is based on the assumption that if you master the behaviour the thoughts and feelings will fall into line with that behaviour eventually which has always seemed overly optimistic to me, perhaps just because I am Autistic and my mind doesn't work that way?

A lot of the people who promote ABA for Autistic Children ALSO promote DBT for Autistic Adults. I have a feeling that if they understood and cared about how Autism really works they would stop doing that.

So much current thinking and therapy is based on the assumption that Autism only matters in terms of appearances. As if, as long as an Autistic behaves in a way people can accept everything should be fine, which totally disregards the fact that the greater majority of Autism goes on inside and effects how we see the world and other people.

The ultimate dehumanisation, to be subject to strategies and therapies that only acknowledge and address a 2 dimensional appearance instead of a whole person.

Intensively, from childhood, this is the exact equivalent of intensively conditioning a small boy to act like a girl, or vice versa.

The Autistic conditioned to act as a two dimensional extension of every NT he deals with, rather than a person in his own right with the capacity to assert himself. The potential is absolutely nightmarish.

As I explained above, I don't EXPECT autism speaks to allow criticism on their site. I think that they SHOULD allow dissenting opinions to stay up there, and it is an ADDITIONAL thing wrong with them that they don't do so. They should be approaching autism from every angle, not just one. I KNOW that isn't going to happen. and I DON'T EXPECT IT TO. BUT, it DISGUSTS me. I don't think I could make it any clearer.

"Autism Speaks" refusal to not just accept, but welcome criticism is some of the most damning evidence of their total lack of any genuine interest, let alone concern for the reality of Autism and Autistic lives. There is no viable alternative explanation and certainly not excuse for it.

If a lawyer claimed to work for you and yet refused to take your instructions he would be guilty of serious malpractice.

THIS aligns with what Ari said to me and is the thing I am stumbling upon here. I think it is because I am 20 plus years in corporate America and the concept/rules of non-prof are different but I am not sure.

My initial reaction to this is, "Why is this so bad?" Autism Speaks has a convincing product, great business talent on their board and they are moving this industry in a lot of positive ways bringing awareness about autism to the masses and serving the parents of autistic children as well as serving the severely affected. If ASAN thinks it has a better product to give this same demographic, then they should organize themselves to go out and sell that product and get the money too. It is hardly rocket science and that is the way business works in America. It isn't inherently wrong for business to spend money on marketing and to grow their business. McDonalds is such a business and they even do some good but one can argue all day long that the food they sell is killing Americans and be right in the same way that ASAN is right. (which isn't really right) In my eyes. Bad or misleading products is a simple case of "buyer beware" and "basic capitalism". The facts are that ABA works in some cases for some demographics. For others OT works. Ultimately the parents are the ones that have to speak for these kids.

As I type this, I am highly distracted and even conflicted. In 3 hours I will be in an IEP meeting representing a 13 year old Autistic boy. I am advocating a complete rewrite/move away of his current IEP which includes things like "...will face people and look them in the eyes" as part of his behaviour plan. I am completely infuriated at how incompetent these professionals are that are handling this child. At an earlier meeting his Mother gave me the following recount.... "As you paced behind us in the room, I watched the faces of the attendees go from confused, to sparks of understanding, to new awareness, acceptance and finally to complete respect. YOU GO GIRL" "After the meeting his Father and I had a talk about freeing our son to be himself even if it means he acts more autistic..."

It was fascinating hearing her side of the story from that meeting as I was completely unaware that I was acting so "autistic" to this quorum's viewpoint or that they found it so weird. It was also fascinating to hear her say that they encourage their son to be anything but himself. And these are great parents. They are simply misled as are all the professionals dealing with this child. This is the story right now that is tugging at my heart and soul despite my inability to properly articulate what is wrong with the current picture, I know something desperately is wrong...

The question is... Is Autism Speaks knowingly guilty of perpetrating this wrong? Meeting with Regional Director of that company tomorrow AM.

If you think using smilies makes you any less pretentious then you are sadly mistaken.

Basically, you said we weren't worth your time. I'm disinclined to submit to such arrogance. Sorry if I breath the same air as you.

I have no connections to either ASAN or Autism Speaks. I am in fact disturbed by the politics of it all. Your declaration of "pointless" is just more of the same political, and quite unhelpful, rhetoric. Engage in a conversation or suffer the indignity of having your hypocrisy pointed out.