Stop Bashing Autism Speaks!
24 Dec 2011, 7:26 pm
I take it that you would campaign for more research into the benefits of corporal punishment in schools - and that you approved of the methods used at the Judge Rotenberg Educational Center, as the parents supported their use.
PS. I am pleased to see that
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Sorry I ever joined
24 Dec 2011, 8:14 pm
The standards for medical use of treatments and drugs are that they be tested to show
1. They are generally effective for the condition treated, and
2. have no harmful side effects, like Thalidomide.
Considering the long history of Psychological Treatments, Burning at the Stake, Chaining to a Wall, Ice Water Baths, with long emersion, Electro Convulsive Shock, massive doses of Thorizine, and other drugs, Lifetime imprisonment without Legal Process, Restraints, more electoshock, beatings, rape, and other forms of Behavorial Coersion,
Maybe it works sometimes on some children, is not much of a Standard.
More effective treatments are known, Waterboarding, keeping people awake for weeks, drugging them, and hanging them in uncomfortable positions. All work according to those who use them.
Sure, some die, but everyone does that, and some who are released seek the blood of their Therapists and anyone related.
From my own life I understand that my Teachers, those Mommie Goddess Union b*****s, were just doing what was best for them, and have an Eturnity of Burning in Hell to reconsider their actions. Perhaps their Rotting Corpses will rise from the grave and communicate that to the current crop of Professionals.
Until then, we have nothing but my rememberance of the carefree days of childhood.
The Overriding Standard is simple, "First, Do No Harm!"
It is obvious that Psychology is not a branch of Medicine, or Science. Science has Ethics about doing Experiments on Humans without Informed Consent.
The ASPCA which runs a series of gas chambers for unwanted animals, also investigate and call for prosocution of animal cruality which if the inmates at The Judge Rotenburg Center were Dogs, Cats, Horses, Cows, would have lead to long prison terms.
Autistics are being treated to a lower standard of Animal Rights than Pets, Domestic Livestock, Zoo and Circus Animals.
Experiments are those things which do not directly benefit the subject, and are only for gathering knowledge and paychecks. The Study of Autism qualifys as one long and unethical experiment.
No one ever did a study of children who became worse after ABA? Really?
This is the basis of the study method of all Medical Treatments, Therapies, Drugs, Adverse results will kill a proceadure that works. Thialomide did work.
That ABA does work in a minority of cases, and we do not want to speak about the other results, is a Smoking Gun.
The same can be said of Chelation, and Driving out Demons.
24 Dec 2011, 8:51 pm
I take it that you would campaign for more research into the benefits of corporal punishment in schools - and that you approved of the methods used at the Judge Rotenberg Educational Center, as the parents supported their use.
PS. I am pleased to see that
Sorry, if I don't communicate as concisely as you do. However, I would rather ensure the full context of the information I provide, reflected, and presented as such.
The research I provided neither studies or suggests that aversives are an effective treatment in autism; there is no suggestion in that study that aversives should be researched at all, and I have made no comment that aversives or corporeal punishment should be studied.
Those facts are evidenced both in that study, and on this website.
At one point in time aversives were used in the ABA therapy, studied by the research I provided, but aversives have been widely abandoned as part of that therapy for over a decade now
I have heard no parental support, here, that suggest, that aversives are an effective means of behavioral modification.
It is a common misconception that aversives are still commonly used in modern ABA methods. Parents have corrected that misconception here, on this site, with reports from their actual experience with ABA, but some not directly involved with ABA as it exists today, continue to assume that aversives are a normal part of this therapy.
The evidence below from Wiki, clarifies this point, as well.
The JRC was the last institution to use electrical shock aversives in their behavior modification program for autistic children, I'm also glad to hear that it has finally been completely eliminated from institutional usage in the US.
http://en.wikipedia.org/wiki/Lovaas_technique
While the therapy has always relied principally on positive reinforcement of preferred behavior, Lovaas's original technique also included more extensive use of aversives such as striking, shouting, or using electrical shocks.[16] These procedures have been widely abandoned for over a decade. A review of literature by autistic activist Michelle Dawson asserts that the method has become less effective since these stimuli were abandoned.[17]
Only one institution, the Judge Rotenberg Center, still employs electric shocks as aversives—a practice that continues to cause them considerable legal and political controversy.[18] This has led some to question whether behavioral techniques should be limited to those who are licensed (see licensed behavior analyst)
24 Dec 2011, 9:22 pm
The full article linked below provides much more detail including research that supports and criticizes the effectiveness of the technique.
This is the specific type of therapy referred to as ABA, in the recent research done by the government, I provided a few posts up, that provides an up-to-date critique on the benefit of this therapy.
It is the only therapy for autism, shown by that research to be effective, and only in a subset of the population of children with autism.
Per the information from Wiki below it's rarely used after childhood if it was not initiated in childhood, in Autistic Children.
http://en.wikipedia.org/wiki/Lovaas_technique
The technique consists of an intensive behavioral intervention which is carried out early in the development of autistic children. It involves discrete-trial teaching, breaking skills down into their most basic components and rewarding positive performance. It is also known for its previous use of aversives to punish unwanted behaviors.
Implementation:
The Lovaas approach is a highly structured comprehensive program that relies heavily on discrete trial training (DTT) methods. Within Lovaas therapy, DTT is used to reduce stereotypical autistic behaviours through extinction and the provision of socially acceptable alternatives to self-stimulatory behaviors.
Intervention can start when a child is as young as three and can last from two to six years.
The first year seeks to reduce self-stimulating ("stimming") behavior, teaches imitation, establishes playing with toys in their intended manner, and integration of the family into the treatment protocol.
The second year teaches early expressive and abstract linguistic skills, peer interaction, basic socializing skills, and strives to include the individual's community in the treatment to optimize mainstreaming while eliminating any possible sources of stigmatization.
The third year focuses on emotional expression and variation in addition to observational learning, and pre-academic skills such as reading writing, and arithmetic.
Rarely is the technique implemented for the first time with adults.[1][2]
The Lovaas method is ideally performed five to seven days a week with each session lasting from five to seven hours, totaling an average of 35–40 hours per week.[3] Each session is divided into trials with intermittent breaks. The trials do not have a specified time limit to allow for a natural conclusion when the communicator feels the child is losing focus.
Each trial is composed of a series of prompts (verbal, gestural, physical[disambiguation needed ], etc.) that are issued by the “communicator” who is positioned directly across the table from the individual receiving treatment. These prompts can range from “put in”,” put on”,” show me”,” give to me” and so on, in reference to an object, color, simple imitative gesture, etc.
The concept is centered on shaping the child to correctly respond to the prompts, increasing the attentive ability of the individual, and mainstreaming the child for academic success.
Should the child fail to respond to a prompt, a “prompter,” seated behind the child, uses either a partial-, a simple nudge or touch on the hand or arm or a full-, hand over hand assistance until the prompt has been completed, physical guide to correct the individual’s mistake or non-compliance. Each correct response is reinforced with verbal praise, an edible, time with a preferred toy, or any combination thereof.[1][2][4]
DTT is often used in conjunction with the Picture Exchange Communication System (PECS) as it primes the child for an easy transition between treatment types.
The PECS program serves as another common intervention technique used to mainstream individuals with autism.[5] As much as 25% of the autistic population has no functional speech, the remainder typically display pronounced phonological and grammatical deficits in addition to a limited vocabulary.[6]
The program teaches spontaneous social communication through symbols and/or pictures by relying on ABA techniques.[7]
PECS operates on a similar premise to DTT in that it uses systematic chaining to teach the individual to pair the concept of expressive speech with an object. It is structured in a similar fashion to DTT, in that each session begins with a preferred reinforcer survey to ascertain what would most motivate the child and effectively facilitate learning.[7]
24 Dec 2011, 9:38 pm
Sounds somewhat similar to what I had, but they called it behavioural modification. My diagnosis was upgraded from LFA to HFA because I responded so well to it. Although the thing is, my stims were never really discouraged, but rather discouraged to do them publicly. At worst, I only got locked in my bedroom to cool off after a serious meltdown or even smacked when I did something really bad, otherwise I was mostly reasoned with, encouraged and motivated to alter behaviour to something more disciplined and appropriate. But the key difference in my case was that I wasn't forced to be normal, I was only trained enough so I can function at a reasonable capacity and the rest is purely up to me.
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"Have a nice apocalypse" - Southland Tales
24 Dec 2011, 11:33 pm
Yes, behavior modification has been around since the 60's, introduced by BFSkinner.
ABA is based on that science, and developed later, a specialized form of behavior modification designed and used only for autism.
There is a post by Nostromo recently where he describes how it helps his child, that helped me understand a real world application of it, today, that is worth repeating, I think.
http://www.wrongplanet.net/postxf181033-0-195.html
25 Dec 2011, 9:25 am
Not playing with other children, having limited social interaction, was basically ignored. I did my school work, wore clothes, no one noticed.
Later I would have been put in special education, and still later, mainstreamed back.
The flaw of special education was isolation. I see that happening now, raising children isolated then wondering why they cannot involve themselves with the world. They have no idea what the world is.
I may have been the bystander, but I was there learning by osmosis.
While there has been more push to higher education, what I saw was after school, most never read a book. I continued, and the concept of lifetime learning, doing more than one thing for a living, was still in the future.
I got my first job in computers because I was a good motorcycle mechanic, and could read tech manuals. Both were self learned.
Youth did have it's problems, but developing my natural talents served me well later.
This is what worries me about Autism Speaks, the must cure idea, my own example of that was my handwriting, and spelling. Demands that I become something I was not ended my education at thirteen. While I was very good at all other subjects, I was tortured over handwriting, spelling, till everything fell apart. I lead my class in Math, Science, Reading Comprehension, but all they cared about was hand writing.
I walked away, withdrew, would have nothing to do with them. It was my only defense.
My fear is that ABA would produce the same results, withdrawing forever from some things, and never doing as I did, going my own way and developing my natural talents.
Since we are now talking about pre school age children, all development is at risk. The reaction I would expect, its what is shown as the worst of autistic children.
Constant demands that I do something I could not, lead to making a real mess of my life. School spilled over to home, and at thirteen I went out and got a job. My whole world had turned on me because of Cursive.
The simple answer for parents, teachers, school, was it was all my fault.
I barely escaped, younger children cannot, their only defense a meltdown.
ABA badly done could be responsable for a lot of the damage seen.
Just like my teachers who were going to make me write cursive if it killed me.
I still have a bad hand writing, the most I wrote was checks, but I did get a typewriter, then a computer, and have written several books. Now I use a debit card, scratch my name, and that is good enough for the world.
Like my Teachers, the Therapists are just doing what they are trained for and paid for. It must be the childrens fault.
Per that peer reviewed research sponsored by the government, I provided on ABA, there is only research that suggests ABA is effective in a subgroup of individuals with autism, and that evidence is not of the highest quality.
And, specifically, there is not enough significant research on potential harm, for a scientific opinion to be given on that aspect of the treatment, per that meta analysis of research that has been done, regarding ABA and Autism.
So your correct it could be of harm, but there is no significant evidence at this point in time that suggests it is of harm or not harm, just effective in some cases and not effective in others.
Emphasis in this area of research is needed.
I was lucky no one cared about my handwriting that has stayed at primary school level since primary school. I guess by the 60's the multiple choice test had become the standard over the writing part of reading, writing and arithmetics.
I got through three degrees without developing the ability to write an orginal paragraph, mostly because I couldn't tolerate writing, had no typewriter or computer. Got an electronic typewriter at age 28, and finally figured out how to come up with some kind of paragraph on my own without alot of paraphrasing.
Writing skills became required again in highschool, about the time I finished college. I was lucky, I guess. But, it would have been nice to learn how to right an orginal paragraph before age 28. Doubt I would have been close to the top 10, in the class though.
We live in a quick fix, cure culture, quick fixes for everything, a pill to get up, a pill to get down, a pill to stay awake, a pill to stay alive, and a pill to be happy, whatever that is.
Maybe the multiple choice test had something to do with this also, along with the development of "the pill" in 1960.
My mother never has had a prescription for anything, she is close to 80, but she was raised in the era, before the quick fix became popular.
There aren't any good long term studies for the harm of all of this either.
When one goes to the doctor, one may tell them they are under a bit of stress; a common answer, there is an anti-depressant for that. Interesting, modern ways to cope with stress.
Another sign of instant gratification.
Timing is everything.
The state i live in required all students take a regents test before completing 30 hours of college credit.
The regents test was a standardized three hour exam that consisted of writing and reading comprehension.
Each student was given a random topic by a proctor and approximately one hour to write a standard essay( introductory paragraph with thesis statement, three supporting paragraphs, and a conclusion). After completing the essay, students were than given a two hour reading comprehension test. The reading comprehension test consisted of a multitude of select paragraphs that increased with difficulty as a student moved along the exam. After reading each paragraph, the student was asked a question related to the topic and required to select the correct multiple choice answer to that specific question.
This exam did not test how well a college student could write, read, and comprehend. It tested how well a college student could perform on a standardized timed test.
The regents test killed college careers of quite a few bright students. The ones who had poor penmanship, couldn't produce a decent essay in an hour, unable to read and comprehend fast enough or had test anxiety.
The Regents Test was phased out about 2 years ago. So, college kids attending NOW want have to deal with IT.
TheSunAlsoRises
25 Dec 2011, 11:13 am
Education is a good model of Therapy. Take credit for the ones who just do it, expell the ones who lack the motor function to write Cursive rapidly.
Many schools got by through graduatings half of the class. They are called Dropouts, but they are pushed out. It works for Union Public Employees.
Now that just dumping them has been stopped, No Child Left Behind, they cheat on the test scores. First they teach to the test, then change answers.
In Education we see a decline over time, to where America comes between Albania and Bulgaria in student performance, even with changing answers.
Like Health Care, we also spend a lot more on Education, for very low results.
Peer reviewed Therapists are like peer reviewed Teachers Unions, or Cops.
It is fairly easy to see who the system is set up for and by, and it is not the consumer. Low performance is blamed on the customer.
I think B. F. Skinner would be shocked to see his work being used on humans. Pavlov would be against it. Conditioned Response is not Education, and was not seen as a good thing.
Autistic children are not considered humans, and no one would think of using these methods on convicts.
Being conditioned to be a normal small child is a lifetime condition, It does not put them on a path to develop and grow,
Autistics do have their own path of development, replacing that with being conditioned to obey is has the potential for lifetime problems.
We, The Lab Rats, Object!
25 Dec 2011, 2:11 pm
You survived.
Personally, I think that a single smack implies a complete breakdown of care.
In the UK, being locked in your room is (normally) illegal.
Wording your experience as "I was only trained ..." sounds like the central goal of ABA. However, a human being should not be "trained" - that's what you might do to animals. A human being should be educated. That requires patience to convey understanding, also acceptance of differences (e.g. TEACHH). "Training" just requires brutal repetition of lessons (i.e. ABA and the other derivative recommendations from Autism Speaks which they prefer to TEACHH).
(I don't think TEACHH is necessarily the best thing since sliced bread - but it's a reasonable place to start - given that it has no connection to brain-washing.)
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"Striking up conversations with strangers is an autistic person's version of extreme sports." Kamran Nazeer
25 Dec 2011, 10:49 pm
You survived.
Personally, I think that a single smack implies a complete breakdown of care.
In the UK, being locked in your room is (normally) illegal.
Wording your experience as "I was only trained ..." sounds like the central goal of ABA. However, a human being should not be "trained" - that's what you might do to animals. A human being should be educated. That requires patience to convey understanding, also acceptance of differences (e.g. TEACHH). "Training" just requires brutal repetition of lessons (i.e. ABA and the other derivative recommendations from Autism Speaks which they prefer to TEACHH).
(I don't think TEACHH is necessarily the best thing since sliced bread - but it's a reasonable place to start - given that it has no connection to brain-washing.)
Problem is, I was an animal in terms of hyperactivity, curiosity and violent tendencies. I was also cunning and exploited those who would bend to my will, so if no-one put their foot down, I would have never improved. If anything I learned a lot from being locked in my room, because in real life, if you do something stupid in society (like beat someone up), you'll end up in a jail cell. So it was quite a realistic lesson of how society treats you if you are violent.
It's not like I was smacked or locked in my room for superficial reasons, it was only if I did something dangerous and/or destructive. Usually I was locked in my room for 5-10 minutes, only long enough to calm down, not for an entire day or anything serious like that. Most of the time I received educating and reasoning actually. I'm guilty of exaggerating things unintentionally sometimes.
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"Have a nice apocalypse" - Southland Tales
26 Dec 2011, 3:48 am
You survived.
Personally, I think that a single smack implies a complete breakdown of care.
In the UK, being locked in your room is (normally) illegal.
Wording your experience as "I was only trained ..." sounds like the central goal of ABA. However, a human being should not be "trained" - that's what you might do to animals. A human being should be educated. That requires patience to convey understanding, also acceptance of differences (e.g. TEACHH). "Training" just requires brutal repetition of lessons (i.e. ABA and the other derivative recommendations from Autism Speaks which they prefer to TEACHH).
(I don't think TEACHH is necessarily the best thing since sliced bread - but it's a reasonable place to start - given that it has no connection to brain-washing.)
Autism Speaks and the National Autistic Society of UK present applied behavioral analysis/lovaas first in both of their listings of therapies for autism with the TEACCH method lower down on the lists.
http://www.autism.org.uk/living-with-autism/approaches-therapies-and-interventions/behavioural-interventions/lovaas.aspx
But, neither organization recommends one over the other. Both organizations refer to studies that show proven benefits of ABA, but it is objective evidence available to any organization that provides information for the general public, not a recommendation of which therapy to use. Both organizations clearly state that these therapies may not work for all individuals.
The TEACCH method is the method most widely used in the school systems in the UK over ABA, whereas ABA is the preferred method in the US, covered now by some insurance companies for usage in the home, in the US.
The NAS calls Autism a difference, focusing more on the social model of disability, Autism Speaks focuses on the medical model of disability.
The way the general population looks at Autism is different, in each country; I think it is more of a general cultural phenomenon than an organizational one.
Culture makes a difference in the approach to care for individuals that need support in life. Egalitarian societies in europe have provided much better support to their citizens than the US for decades now, with Scandanavian countries leading the way.
Your comment that a single smack indicates a lack of care, illustrates the differences between Western cultures as well.
Scandanavian countries have outlawed corporal punishment, they have some of the lowest rates of violence, but they also provide the greatest amount of social support for their citizenry.
The UK has outlawed corporal punishment in the school setting and limited it in the home environment, and provides provides social support to it's citizenry, that as faltered a bit in the last few years.
The US, interestingly, allows corporal punishment in the school settings in most conservative (partriarchal) leaning states, that also lead the way to limit social support to citizenry; while many liberal (egalitarian) leaning states, that support social support to citizenry, have outlawed corporal punishment in the schools.
Ideology on gun control is associated with ideology on corporal punishment and social support as well. A citizenry that provides support for each other willingly, is a more civilized citizenry
Teacch and the general ideology of the largest Autism organization in the UK, reflect overall cultural differences in the way Autism is viewed, as well as how the society takes care of it's citizenry as a whole.
In this case though, what sounds like the kinder, gentler approach that accepts differences in people with autism, may work for some better than others; however the ABA approach may work better for others, because of those actual differences.
If the NAS did not reflect the actual science behind these therapies in providing information to the general public, through independent peer reviewed analysis that is available, I would wonder about the credibility of the organization; same with autism speaks.
Objectively speaking each organization provides similiar information on TEACCH and ABA/Lovaas, in an almost identical format, so if one were to use that point to criticize autism speaks, the criticism would be of similiar value in a critical analysis of the NAS in the UK.
26 Dec 2011, 8:48 am
The NAS calls Autism a difference, focusing more on the social model of disability, Autism Speaks focuses on the medical model of disability.
...
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"Striking up conversations with strangers is an autistic person's version of extreme sports." Kamran Nazeer
26 Dec 2011, 4:00 pm
The NAS calls Autism a difference, focusing more on the social model of disability, Autism Speaks focuses on the medical model of disability.
...
Your welcome, each organization is proud of their efforts in these two important areas of focus on autism.
From a scientific perspective the disorder is inherently disabling for some, and from personal perspectives, it is not inherently disabling at all for others, just a difference that should be accommodated in society.
Both perspectives have merit, however neither can be discounted, due to the reality for all individuals affected by this specific disorder. Some who require 24/7 support from society to survive, and some who could use minor accommodations from society to survive, something the UK does better than the US, that has little to nothing to do with Autism Speaks, an organization focusing their mission on research and awareness.
Both organizations, however, do focus on awareness of available therapies. It is why it is important, and evidenced on each website, that neither organization recommends one therapy over the other, each organization provides similiar objective evidence about TEACCH and ABA/Lovaas, in an almost identical format, listing ABA/Lovaas first in a series of therapies with TEACCH further down on the list.
26 Dec 2011, 5:19 pm
There is no Medical Model of Autism Disability. There is nothing Medically Wrong, and there are no drugs or treatments called for.
The American Model is a creation of Psychobabble, Not being a Medical Field, or a Science, it is closest to Advertising, "Do you have bad breath?" "Arn't you glad you use Dial, don't you wish everyone did?" "Is your child missing out on life because they are shy?" "Is your Libedo trying to get your ID and Ego together for a threesome?"
We can help! For little girls we have a collection that will open them to being very popular, Bratz Dolls and thong underwear, printed with cute slogans, Ask Me Anything, Born Ready, I roll over, $20, Going Down?
For Boys we have a program approved by The American Kennel Club, where they learn to Heel, Kennel, Sit, Beg, and Lay Down. Electric shoe insoles,inner belt, and a handy pocket size controller, will soon give you a boy who will obey your every command.
Americans can always be sold a product, that promises instant gradification.
If the Odd Ducks of England think someone a bit strange, and in need of some social support, They are experts at Odd, and not everyone can apply for a Grant from The Ministry of Silly Walks.
Mainland Europe was fully investigated by the Secret Police, and know for a fact what their citizens do behind locked doors. The King was shocked, The Queen demanded pictures, lots of pictures,
Americans are perfect, and ever since Jesus said, "Go west young man," or was that Ogalthorp? They have seen themselves as living in Perfection, or Denial.
Everything must have an answer, something quick and simple, to fit their culture. Without in any way upsetting established traditions.
Europe through Genetics should have the same Autism as America, but they do not speak of an Epidemic. America is only seeing what was always there, or they have created.
The NAS and mainland counterparts just see another Social Disability, and deal with it directly. 1% is not much where Disability is a leading industry.
America sees the need for a Charity to collect money to study why they should continue collecting money, and recomends Korean War Brainwashing as the Cure. This of course is privately funded. Direct aid would only encourage more children to become autistic.
The main treatment has been Awareness Ribbons, Making people aware of a Charity collectings donations.
We need something more, perhaps Holiday Themed Awareness Bows!
26 Dec 2011, 6:54 pm
Just to remind people that I don't bash Autism Speaks only because it is in America. They did invade the UK with a (rapidly disguised) tentacle: http://preview.tinyurl.com/autistica
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"Striking up conversations with strangers is an autistic person's version of extreme sports." Kamran Nazeer
