The Autism Industrial Complex

The Autism Industrial Complex

Neuroscientist Elizabeth B. Torres, wrote:
"Autism is at an inflection point today. We are poised for a paradigm shift in autism research, education, and therapies; this book inniates that shift, and does so superbly. In The Autism Industrial Complex: How Branding, Marketing, and Capital Investment Turned Autism into Big Business, we learn about the history and evolution of this multi-billion dollar/year operation. Thanks to this history, we will remember Lovaas, ABA, and behaviourism in general not as a science, but as a branding, rhetoric, and marketing plot that transiently misguided many well-intended parents and professionals, and that in so doing profited with greed, by preying on our human hopes, our trust in science, and our fears."
Close quote.

Autism Speaks persistently spreads the false narrative that autistic people are a tragedy, burden to society, destroy our families, epidemic disease etc...
Autism Speaks and the BCBA masterfully crafted a money scam to profiteer on autistic people, ABA is not only out of date, it's proven pseudoscience by 21st century science.

As recently as 2019 the BACB (ABA leadership board) has been caught by the American Psychological Association practicing publication bias.
Abstract
The “replication crisis” describes recent difficulties in replicating studies in various scientific fields, most notably psychology. The available evidence primarily documents replication failures for group research designs. However, we argue that contingencies of publication bias that led to the “replication crisis” also operate on applied behavior analysis (ABA) researchers who use single-case research designs (SCRD). This bias strongly favors publication of SCRD studies that show strong experimental effect, and disfavors publication of studies that show less robust effect. The resulting research literature may unjustifiably inflate confidence about intervention effects, limit researchers’ ability to delineate intervention boundary conditions, and diminish the credibility of our science.
Close quote.
(Tincani, 2019)
Published online 2019 Mar 18

Further supported by anti-ABA workers like Psychological Bulletin.
www.alfiekohn.org/.../

In April 2023 they stakeholders are having their next Autism Investment Summit.
autisminvestorsummit.com/

"The Autism Investor Summit provides a unique opportunity for autism service providers, investors and key stakeholders to meet in a private setting to discuss the autism services landscape, opportunities for investment and to discuss and learn about best practices and innovation in all areas of autism services."

"OPPORTUNITIES FOR INVESTMENT"

Remember, the services are the ones who gain money bankrupting parents and carers.

Why did Eisenhower warn the nation against the military industrial complex?

1) He feared the dangerous potential for abuse of power in association with ideological monopoly and commercial profiteering.

2) He feared that decisions about military spending would not be driven by the interests of the national security, but by the interests of the high potential for private and corporate profit.

3) He also feared that any human cost of military proliferation would be regarded as insignificant in the face of the industry's enormous profitability.

Notice autistic people are under the very same threats, everyone is a potential consumer of The Autism Industrial Complex.

Professor Alicia Broderick
https://youtu.be/-fxzfuvuek4

Journalist John Summers
www.thenation.com/.../

Parents
  • Daniel,

    Unfortunately the way our society is structured means that most things are marketed and marketable.  I like to believe that the majority of people are genuine and wanting to help each other though.  I'm not sure how ABA has been used in different cases or what the individual experience of it is.  All I know it that in order to function in society, there are certain behaviours that are deemed acceptable. 

    My daughter is Autistic and I have many traits but no diagnosis.  I explained to her at an early age that she'd need to find different ways of stimming because other people would not understand her need to do so.  It saddens me but I know how some people can be.  I guess this is a kind of positive reinforcement so she will not be bullied by those who do not understand Autism.  It's my way of protecting her but doesn't mean I am modifying her behaviour in a negative way because she can be free and herself when she's with me but we both have to act a certain way in public.  Sad but true.  What I find upsetting is that folks have to do this in order to "fit" into society and the people that aren't able to control their behaviours are labelled unfavourably by a society that doesn't understand.  :-(

  • I more than strongly disagree with you about fitting in, you immediately fall in the logical fallacy of the bandwagon.

    Women aren’t allowed jobs, slavery, racism, discrimination and more were deemed “socially significant” behaviour, you are suggesting if society chooses to be evil and immoral we should all be evil and immoral people. You are going to have to justify your idea that it’s better to stop your daughter stimming, you’re actually claiming we should approve bullies bullying people but not approve stimming, why not modify the bullies?

    When you claim we need to conform what are you actually saying? You’re saying to people “stop being who you are” which illustrates society is so hypocritical, it claims to equally value everyone and directly does the opposite wishing to hurt people.

     I will not conform to your immoral idea that I must devalue and discriminate a minority and praise bullies for bullying someone. Your ideas are the same as Ole Ivar Lovaas’s.

Reply
  • I more than strongly disagree with you about fitting in, you immediately fall in the logical fallacy of the bandwagon.

    Women aren’t allowed jobs, slavery, racism, discrimination and more were deemed “socially significant” behaviour, you are suggesting if society chooses to be evil and immoral we should all be evil and immoral people. You are going to have to justify your idea that it’s better to stop your daughter stimming, you’re actually claiming we should approve bullies bullying people but not approve stimming, why not modify the bullies?

    When you claim we need to conform what are you actually saying? You’re saying to people “stop being who you are” which illustrates society is so hypocritical, it claims to equally value everyone and directly does the opposite wishing to hurt people.

     I will not conform to your immoral idea that I must devalue and discriminate a minority and praise bullies for bullying someone. Your ideas are the same as Ole Ivar Lovaas’s.

Children
  • That's why there is a need for what in the civil service we used to call evaluation. We used to talk about it a lot but rarely did it. It's where you go back and look at old policy and see if it actually achieved it aims. As far as I know no one is going doing research into ABA and other behavioural therapy approaches to autism to see if they are damaging. Or at least if that work is being done its very low profile at the moment.


  • Actually just realised the time, so pls forgive me if this is the last reply I make for a good long while. (As soon as the Other Half gets home we will turn off our devices, shut the door to the world and get comfy for Xmas Eve + Day and  boxing day.)
    Hope you have a good Xmas. Slight smile

  • Only the theories that stand up to repeated attempts to prove them wrong are considered valid. I do think psychology as a study could use more of that approach.

    In that regard we certainly agree. I suspect the reluctance however is (abeit rightly so) an ethical one, as to test those therories in psychoanalysis would require literal human guinea pigs and that risks a lot of potential harm. Therefore I think the progress is slower as they are forced to await data as it occurs naturally and they must wait until they gain a big enough data pool before they can claim any firm conclusions.

  • I mean the entire scientific method is based on proving other people wrong. It's like survival of the fittest applied to theories. Only the theories that stand up to repeated attempts to prove them wrong are considered valid. I do think psychology as a study could use more of that approach.

  • You think it's because most physicists are likely to be autists themselves so give 0 effs about the feels of their peers in the quest  for being correct? (Not a bad thing for a scientist.)  haha XD

    (TBH I am of the opinion we need a lot more autist psychologists and psychiatrists.)

  • I doubt you'd find it. Autism research is a small pool and the people doing it aren't keep to antagonise each other by doing work that invalidates other peoples therapies. You have to look at physicists for that sort of commitment to hypothesis testing. :)

  • ,

    It seems I used the wrong terminology in my previous post because it's not positive reinforcement in your tiktok example that I use with my daughter.  I praise her for who she is, not what society expects her to be.  It's a good video but disturbing if that's been done to people in that regard.  I had to suppress who I was to look after my Dad because he was really ill so I can understand how suppressing yourself feels.... I'm not sure if the tiktok video explains the whole picture though?

  • Sorry but that has hallmarks of a fallacious equivalence for tiktok clout and I don't consider it unreasonable to expect evidence of claims (that could be easily misunderstood and therefore dangerous) like these should really be presented by an actual psychiatrist/psychologist who can explain a studied and documented mechanism of causal effects.
    I respect that you think that way, and you are entitled to your beliefs, but it isn't enough for me to change my own point of view without substantial hard evidence.

  • Sam likes to draw,

    I try to be the best person/Mamma I can be wth who I am and my upbringing.  I will make mistakes and I will fail but my determination to be better and try to move forward with love is what makes a difference I think.  I do think society has vastly improved in acceptance for all compared to when I was a child but there'll always be room for improvement just as there will always be folks who are ruled with hatred.

    I wish I could heal it all but all I can do is accept reality and try to be as kind and caring as I can be.  

  • I'm so glad you have a good relationship with your daughter. : )
    I live in hope of proper autism acceptance in society one day, even if that does seem quite a ways off, and then stimming will be treated as the non-issue it should but until then I appreciate life is imperfect and sometimes you just have to make it work for you as best you can. And we just have to do what's best for us personally. Life is hard enough after all.

  • Sam likes to draw,

    I'm so sorry you've experienced abuse (me too).  Thank you for your support and understanding.  My daughter and I have a great relationship.  We are so lucky to have each other.  I spoke to her about what she thinks about me as a parent and the comment I received on here.  She said I'm an awesome Mummy (she's nearly 12) and that she prefers that I told her about different ways to stim because the bullying is less as a result which's great.  She's not afraid to stand up for herself which I am so proud of. :-)

  • Triker,

    Thank you so much for your support. 

    I have been on a huge researching/learning journey from when my daughter was diagnosed through to realising my ex husband and myself are most definitely Autistic but not diagnosed.  I've found this forum cathartic but sometimes upsetting because of how text can be misconstrued.  I'm glad you understand what my post means and that you can see the kind of parent/person I am from my length of time posting on here.  I hope that everyone here gains insight, understanding and support from here which I have been lucky to find. 

  • I don't disagree that it should be possible to stop at least most bullies. However, who can stop them? A child who is confused and upset and possibly quite young? (I do not know the age of the child in question.) A parent? I don't know much about how schools work these days, it's a long time since I was in one and only when I was a child myself, but I don't think a parent has any rights to act, all they can do is ask the school authorities to do something, or advise their child on how to deal with the problem, and that might well depend on the child. Do the school authorities deal well with the bullying problem? Some do better than others.

    To criticise an individual parent, and quite harshly too because your tone was not gentle, is not really fair. OK so some parents do have no understanding of autism and can try to make their kid behave not autistic, but the person to whom you said this is not in that category, as is clear not just from other posts on this site, but from the post you replied to. 

    When I was a kid who was bullied, I did not know how to stop the bullies. I tried ignoring them, I tried fighting them. Every kid knows there is no point reporting them. I could not communicate with them, I am autistic! Although I did not know it then, but the thought of trying to reason with them did not seem plausible. I have to say that it might have worked, at least with some of them, if there had been some way for that to happen. But I was not capable of creating such a way and it was not made by anyone else either.

    Maybe a parent could research ways to prevent bullying and ask the school to implement them. But in the meantime, how do they deal with their upset autistic bullied kid? I do not think it wrong to advise the kid that if they find a less visible way to stim then they might be bullied less, but only in front of the bullies. This is not rewarding the bullies. Yes it is not an ideal solution, but really, what is a powerless parent to do? Nor is it removing autonomy from the autistic child, in fact it is giving her an option she may not have thought of, that her innocent stim might be what is attracting the bullying, such that if she hid it then she might not be bullied. I agree that is horrible, but it is not removing her autonomy, it is giving her more options, not fewer. She still has the option to do the stim even knowing she might get bullied for it.

    Since you seem to know how bullies should be dealt with, better to just advise the parent what can be done and how to get it implemented in the school, instead of criticising the parent, who is ND like the rest of us and thus has their own struggles.

    Most of the time it takes getting to and solving the root issue of what's happening beneath the surface in the bully's mind.

    Which is probably beyond the skillset of a bullied autistic kid. If you managed to do this when you were a kid then that is great, but it is probably beyond most kids. You could try teaching bullied kids how to deal with bullies, or write a book about it or have a youtube channel! I'm sure it would be useful info for many kids, ND or otherwise.

  • Daniel.

    Those don't really prove that positive reinforcement is abusive though, in the 2nd video the word abuse- isn't even mentioned and the singular time it is mentioned in the 1st video is "And one last thing that I just really wanted to point out here is the other thing with autistic students or any vulnerable person is that the abuse rates are much higher in vulnerable people."
    Which is not the same as saying "positive reinforcement is abusive", it is a statement separate (mentioning only a correlating fact, not explicitly linking it as a causal one) to the statement about positive reinforcement or rather "strength-based learning" spoken directly before.

    So this is quite a jump and very emotive language you are throwng around and as an abuse survivor myself I find it upsetting to think you would do so so lightly. Honestly this so upsetting for me to witness this thread unravel, I can only imagine how you've made the accused feel.

  • There's a source in my post itself by Alfie Kohn, a psychologist who works with educators, parents, and therapists globally. 

    I'll connect a couple more links with one being how rewards are proven to make things worse off than they were in the beginning. 

    https://youtu.be/Iw0Qxz2dKNo

    Self-Determination Theory 

    https://youtu.be/m1d_AR-r0Iw

  • Yes, bullying can be stopped without the use of violence. Why do bullies choose people they perceive as vulnerable? That should tell you a bit about what they think about themselves.

    Sometimes people don't understand what they're doing and how their actions effect others. In some circumstances all it took was telling them it is upsetting and they feel guilty showing their apology is legitimate. Most of the time it takes getting to and solving the root issue of what's happening beneath the surface in the bully's mind. Something's motivating them to bully people, remove the motivator and they are no longer motivated to bully. 

    Solving problems takes more than looking at the outside appearance of something. Can you solve a problem in a house if the only information you have is the outside appearance of the house? 

  • positive reinforcement in and of itself is abusive. 

    I think it would be more helpful if you could quote a source on that since positive reinforcement is a widely popular method in many parenting books and behavioural therapies often written by actual family therapists and child psychologists. I'm sorry but that's simply too big a claim to not back up.

    Actually whether you mean it or not your words and especially this claim are particularly accusatory so it is cruel and unusual to dismiss Relaxed️Tired faceWearyPensiveSobCrySleepySleepingRelievedPersevereNo mouthNeutral faceJoyRoflSmileyRelaxed️ 's reaction so out of hand.

  • There is no aggressive tone coming from me, it's sad you find facts aggressive, only the guilty do so. In neither of your two responses did you justify your suggestion of doing the wrong thing just because it's easier, that was Lovaas's idea he based gay conversion therapy and autism conversion therapy on, that it's easier to change a "sub-human" than destigmatize a behaviour in society. Even though that's a fact, it's still the wrong thing to do. 

    Everything I've said is in your response, you said we should fit in even though we know that harms us, that's you suggesting we should conform to social norms whether they're immoral or not. I didn't say you have immoral ideas, I supported my claim by pointing out to you social norms are not inherently good providing examples. 

    Choosing to strip a person of human autonomy for the sake of preventing bullying is synonymous that we should allow bullies all their rights and abuse the minority by disallowing them the psychological human need of human autonomy and emotional regulation. Disallowing your daughter autonomy for the sake of bullies is psychological abuse. So it's certainly not "positive reinforcement" especially as positive reinforcement in and of itself is abusive. 

    Bullies can be modified or taught to stop bullying without the use of violence. It takes going below their surface and see what's going on in their mind and behind the scenes. Something motivates them to bully people, the fact they always choose people they assume to be vulnerable should tell you something about what they think about themselves. I were bullied myself, all I had to do was figure out their underlying problem, it's not always misunderstanding, there's lots of people they don't understand so why don't bullies bully them if it's all about misunderstanding?

    Psychologically abusing your daughter as a method to prevent bullying is still abuse whether it's intended or not. Doing the wrong thing for the right reason is still the wrong thing to do. 

  • Daniel, a lot of assumptions seem to have been made there. And a lot of words put into people's mouths (perhaps both ways now).
    I think it's a little harsh to blame fellow autistic people for trying to make their interactions with allist and NT society easier, it's not always safe to "just be yourself" and that's not only true for just autists.
    If we all agree it's NT/allist pressure that's primarily at fault here can we just take a moment (everyone) to pause and have a little compassion for eachother as we are all dealing with the same societal crap basket to varying degrees.
    Maybe re-read what eachother are saying in case something got misunderstood and at least be open to the idea of giving eachother the benefit of the doubt.
    I think I know what line spiralled all this misunderstanding but it's not me that needs to realise it. I'm just here letting you know what I see because it's very saddening to see this fallout*.

    *(As an aside fallout seems to be happening a lot in general among other forum members too in the last few days, which is a shame because you'd think we would all be inclined naturally to ally with eachother for some greater community benefit. This forum has been breaking my heart recently.)