Asperger's Experiment

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I am a psychiatrist and I have treated many people in my career with Asperger's syndrome from children to adults. A psychologist and a neurologist that I met some time ago told me of a secret experiment they found out about carried out starting from around the mid 1990's and ending in the early to mid 2000's in many places in the United States and Canada. This experiment was done on several children of many different ages from 2-3 years of age to late teens. The children in the experiment were generalized anxiety disorder sufferers, children with depression, a few normal children and children with Asperger's. The children with generalized anxiety disorder were diagnosed with Asperger's and the Asperger children where secretly diagnosed with Asperger's but they and the parents were told they had generalized anxiety disorder instead. The children suffering from depression were also diagnosed with Asperger's. The few normal children who were falsely diagnosed with Asperger's were the control group and they had interests and hobbies similar to
what Asperger children have that was used to falsely diagnose them.

This was done to get a better understanding of how children with Asperger's become the way they do when they get older such as not going out with friends, intensely studying stuff that interests them, talking and acting like how an adult does, becoming socially outcast and develop anxiety and depression. What is known to happen is parents with a child with a diagnosis of Asperger's and especially teachers and school staff will often be quick to dismiss a reported incident of bullying or harassment or cruel teasing as the student misinterpreting what is happening or they might be more judging of what the children did or did not do. Many times the other students will see the child not being taken seriously by school staff and bully the student because they will get away with it more easily. Sometimes parents and teachers will not have much confidence in the child's abilities and will be more noticing and critical of problems we all have and often discourage certain activities. Many of these parents will often worry that their child will do something
wrong based on something the child did when they where for example 10 years old that is known to happen in normal children at that age that they have long outgrown. A lot of times parents of these children will treat them as if they were a younger child and be reluctant let them go out and do things like what their peers do.

It was thought that being exposed to these things would stunt the confidence, social and emotional development, gaining life skills and gaining independence with age and having difficulties in social situations. It was thought that it would make them use stilted speech and talk with advanced words such as beckon instead of call or in other odd ways in an attempt to gain respect and to be taken seriously. Those carrying out this experiment needed to see if the bullying and teasing was the result of the child's different behavior or the cause of being treated differently by staff at school. This experiment was allowed because better understanding was needed of this fairly new disorder and the anxiety and depression sufferers would get help in school and access to resources to make life easier when they would not otherwise get these services. They needed to know if going through being treated differently in such ways would make Asperger's worse or cause symptoms in other people without Asperger's. It needed to be known if a new and different approach would work better if they had other emotional or psychiatric disorders or to see if it would be better to wait until the child got older and try other things first before diagnosing them with Asperger's.

Very interesting. I believe I've been falsely diagnosed with autism. I think I just have ADHD and anxiety. I was definitely treated differently growing up. I also got accused of being "socially inappropriate" when I didn't do anything wrong. I definitely have autistic traits, but I think most of them are caused by environental factors. The rest of them are caused by ADHD. My worst symptoms have always been ADHD related. Teachers always blamed my issues in school on not being able to deal with change or problems with abstract thinking. I don't actually have issues with those things. I just have horrible executive function and short term memory.

What were the results of this study?

It really sounds like an urban legend to me. What's the point of conducting a scientific study if you keep it a secret and don't publish? And how would you get funding? Also, it sounds like it has serious ethical violations if the parents were not told the true diagnosis of their children--psychological experimentation without the participants' consent (or consent of their legal guardian) is a serious medical ethics violation.

On the other hand, I've read of some psychological treatments of autistics (e.g., ABA) that were so bad that it prompted the UN to open a human rights investigation.
http://www.theguardian.com/society/2012/jun/02/un-investigation-shock-treatments-autism

Ditto for some treatments of homosexuals (http://www.cnn.com/2011/US/06/07/sissy.boy.experiment/) and sterilization of psychiatric hospital patients and antisocial types (http://mic.com/articles/53723/8-shocking-facts-about-sterilization-in-u-s-history#.Y2xTeQujA). Most of this is pre-1970, but still... it's pretty disturbing stuff. LSD was tested on people without their knowledge, resulting in several deaths (https://en.wikipedia.org/wiki/Project_MKUltra). A recent article in the New England Journal of Medicine reported that psychologists helped design torture techniques in Guantanamo Bay and Abu Gharaib Prison. https://www.wsws.org/en/articles/2005/01/tort-j13.html

I gotta say, this is why psychiatrists and psychologists give me a serious case of the creeps. They make up theories like Kanner's and Lovas' "refrigerator mother", based on zero scientific evidence and promoted very harmful programs like the "parentectomy," the idea that the refrigerator mother is so bad that the autistic child was better off in an institutions (presumably being subjected to ABA and forced sterilization). The idea of experimenting on children without informed consent and denying them treatment that might help is just more arrogant and reprehensible doctors playing God. Since we now have strong evidence that autism most likely has neurological causes, this experiment would have needlessly kept families in the dark. Labeling non-Asperger's children with Asperger's would needlessly stigmatize them, and force parents to pay for a lot of very expensive therapies, since many were not covered by insurance until recently, and expose parents to a lot of quack therapies and diets.

If anybody wants to know more about the history of the treatment of autism by psychiatrists (especially psychoanalysts, brrrr), read Steve Silberman's NeuroTribes.

Perhaps someone will do a study on the stunted empathy and ethical boundaries of psychiatrists. They've got a lot of explaining to do.

For a psychiatrist, Simon32 writes surprisingly poorly. I can't help but doubt the whole thing.

that struck me too

Also, what's his point in asking us about it? If the subjects were unaware of the study, we wouldn't know anything about it, would we? The OP's motives are unclear. Is he just wanting to mess with us and make us doubt our diagnosis?

He might be a troll. People have been using autism as an insult a lot lately.

Interesting, but I want to hear what the alleged results indicated.

LOL

The children in the study had anxiety disorders that many times can look just like autism or Asperger's and forms of autism that can look like anxiety. I was told that some of the children that had anxiety disorders that were diagnosed with Asperger's did not do too well growing up compared with the children that did not receive a diagnoses of Asperger's. The study was done to determine if being stigmatized would cause autistic behavior to manifest in people who did not have any form of autism. When I was first told of this I found it hard to believe myself. In my career I have seen many people who were diagnosed early in life and people diagnosed in their late teens many of the patients diagnosed early who had generalized anxiety disorder did not do as well in life compared with the people diagnosed later in life who had no anxiety disorders.

"The children with generalized anxiety disorder were diagnosed with Asperger's and the Asperger children where secretly diagnosed with Asperger's but they and the parents were told they had generalized anxiety disorder instead. The children suffering from depression were also diagnosed with Asperger's. The few normal children who were falsely diagnosed with Asperger's"

Simon, I'm exceedingly doubtful that would've made it past any ethics committee and if it was indeed done, it would be mentioned in the same light as the dexamethasone experiments of Dr. Maria New. Surely as a professional you recognize the inherent dangers in intentionally misdiagnosing people?

Can you shed any further light on this, such as maybe an actual citation, please?

I don't understand this sentence--do you mean people who were diagnosed with Asperger's early in life had anxiety disorders and generally had more problems coping, and people who were diagnosed with Asperger's late in life did not?

Or do you mean people who were diagnosed early in life with general anxiety disorders (no Asperger's) did less well than people diagnosed with general anxiety (no Asperger's) late in life?

I presume you mean the first meaning (otherwise it REALLY makes no sense). Somehow it seems very hard to believe that a person having undiagnosed ASD late into life will not have anxiety, depression, or both. Most accounts I've read on these boards indicate that people diagnosed late in life had anxiety and/or depression, and many had patterns of poor performance in school, suffered bullying, failed relationships, and long periods of unemployment and frequent work disciplinary actions. A lifetime of being told that you are not trying hard enough, are a behavior problem, a freak, lazy, ret*d, bad, a sick psychopath, not performing up to ability, and uncaring, is going to put a serious dent in a person's self esteem. (Yep, someone once called me a psychopath. My MOM.)

At least people diagnosed in childhood KNOW what the problem is--it isn't their fault, and they are given help to learn how to interact with others and cope. Asperger's is a heavy label to carry, but it's a lot better than the ones I listed above.

^ This

Though, this brings up an interesting thought. I suspect that the formal diagnosis of a child (particularly an HFA diagnosis) impacts the parent (or more so, how the parent approaches parenting that child) more so than the child. I doubt a child would alter behavior because he/she was assigned a label. More so, I cannot imagine why a parent would want to tell his/her child that he/she has such a label. Eventually, yes. But not when they are still a child.

Rocket123:
^ This

Though, this brings up an interesting thought. I suspect that the formal diagnosis of a child (particularly an HFA diagnosis) impacts the parent (or more so, how the parent approaches parenting that child) more so than the child. I doubt a child would alter behavior because he/she was assigned a label. More so, I cannot imagine why a parent would want to tell his/her child that he/she has such a label. Eventually, yes. But not when they are still a child.

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I had a longer message before, but cloudflare stopped me. I think labels affect the way other people treat people and the way people get treated affects the way they behave.

The experiment was partially about how parents raise a child with autism or Aspergers. Second is symptoms of anxiety and depression often overlap with autism spectrum disorders often and many times it is hard to separate them. The third thing is unethical experiments can still happen in America and Canada today not just in some country with really bad human rights violations. The false diagnosis was like how a placebo is used during a drug trial in one group of people where the other group gets the experimental drug.